Born to be strong

Back from NYC

2012-01-31T16:33:00.000-08:00

Hi Everyone,

We are back from NY and Julia has completed cycle 2 of treatment. She was well in NY and handled her cell infusions with no complications.....thank god. BUT it wouldn't be our story if we didn't have some drama.......The Tuesday before we left for NY Julia was at Sick Kids for clinic and ran into her good friend from the hospital. They were so excited to see each other as they have been on this journey together pretty much since the beginning. On Thursday I get an email in NY from this little girls mom informing me that her daugther has the mumps and symptoms started the Wednesday night. Immediately I contact Julia's oncologist and she confirms that this child has the mumps and Julia has been exposed. We have not seen this little girl in awhile and what are the chances we see her the day before leaving for NY and that she gets the mumps the day later. Because of Julia's heart transplant she can not receive any live vaccines therefore has never been immunized against the mumps. So the doctors from NY talk to Toronto and they decide Julia will need something to protect her in case she gets the mumps. Imagine me.......in NY freaking out at this point and it was only day 2 of 8. Apparently the period in which Julia would be most likely to contract the mumps (if she does) is between day 12-25. Therefore after many discussions it was decided we would wait until we got home to give her the immunoglobbulin as it is a very expensive drug to be getting in NY. So we landed in Toronto on Thursday and went straight to Sick Kids once again. We spent 5 hours there and Julia got an infusion to boost her immunity. What a long day. Therefore Julia is now in her 12-25 day isolation period where she would be most likely to get the mumps if she was going to get them. Just because she was exposed doesn't mean she will actually get them. Someone up there just doesn't think we have enough drama in our life so they decided we needed more....lol.

On a good note, Julia is feeling great. She has lots of energy and is eating really well. She has her scan coming up and I am extremely anxious about it. This scan will tell us a lot about what's going on and if the treatment in NY has had any effect on the disease. We are scheduled back in NY on Feb 19th to begin cycle 3.

For now we are just taking things day by day and enjoying the fact that Julia is feeling strong and well. We are at the hospital tomorrow for clinic and we'll see what her bloodwork shows.

Once again I want to thank everyone for your unbelievable support. We couldn't do this without your prayers, encouragement and support. I will keep you posted on how Julia is doing and her scan results.

Nadia

1st Infusion of Cycle 2 Done

2012-01-14T06:43:00.000-08:00

Hi Everyone,

For those of you who didn't know we left for NY on Wednesday for the beginning of cycle 2. Julia received her 1st cell infusion of cycle 2 on Thursday and we returned home yesterday. We will return to NY on Wednesday for the 2nd and 3rd infusion of the cycle. Since I had a very hard time in NY last time we decided to split the time up in NY. Therefore we went in this week for 3 days, got cells, and came home. We will leave Wednesday and stay for 9 days and receive infusions 2 and 3. Of course the trip was anything but uneventful of course. On Wednesday we boarded our flight and were about to take off when the pilot came on and said there was a major mechanical problem with the plane and it would not be taking off.......everybody off the plane. At this point I was panicking as Sloan was expecting us first thing in the morning for cell infusion. We begged Air Canada to get us on another flight so they did. We board that plane and pulled away from the gate and the pilot comes on and says "as we were pulling away the ground crew noticed something hanging on the side of the plane. Sit tight and I will keep you all posted." At this point I could not beleive our luck....shot me now! Finally we took off and got to NY safe and sound although extremely late. We arrived at Sloan the next morning and Julia got her cell infusion. All went well and they wanted her to return Friday morning before leaving. We brought her to clinic on Friday morning and doctors find that she has an ear infection. They start her on antibiotics and told us to give her a dose of tylenol for the flight. About 20 mins before the car is picking us up to go to the airport Julia spikes a fever and is hanging over the toliet bowl wanting to vomit. As you can imagine I'm freaking out. I call Sloan and bascially they tell me if I think shes stable get on the plane. We decided that we still have a couple hours till the plane takes off so I will watch how things go. So off to the airport we go. I spoke with Julia's oncolgist who gave me the same advice but said to come straight to SIck Kids once we land. We get to the airport and our flight has been cancelled. I start crying to the Air Canada rep telling her I need to get home and go to the hospital. They stop the 12:00 flight which had just shut there doors and get us on that flight. A very nice couple who heard our story gave up their 2 first class tickets and let Julia and I sit there. I was nervous the whole flight but Julia was fine. We land in Toronto and go straight to Sick Kids (fron one hospital to another). The docs were waiting for us with a ...welcome home. They did blood cultures and gave Julia a dose of IV antibiotics to protect her. I get a voice mail as I'm sitting at Sick Kids and its SLoan panicking saying they think we shouldn't fly and this may not be coincidence and to come back to the hospital. They thought our flight was 1:30, not knowing we had got on a earlier flight. I call NY back and tell them we are home safe and at SIck Kids anbd they were so relieved. After all that drama we are home and Julia is feeling better. I just hope she's all better to go back to NY on Wednesday.

Julia will finish this cycle and than have a PET/CT the week of Feb 13th. Doctors at Sloan Kettering believe that the findings in the lungs are disease related and not infection. If they do not see any improvment on PET they would like to go in and biopsy it to see if my T cells are in the tissue. On a good note Julia is now EBV negative in her blood which is great news and looks like the cells are doing what there suppose to. This scan is huge for us.

I can't even begin to describe how crazy our lives are right now. It really does feel like a bad bad nightmare. Somedays I say to myself no one can have this much bad luck....its crazy.

I thank you all for your continued support and please know that I appreciate every bit of it even though I don't always respond to messages......I'm sorry, like I said earlier I am having a very hard time right now.

I will keep you updated on how it goes in NY next week.

Nadia

Update on Julia

2012-01-03T06:46:00.000-08:00

Hi Everyone,

Hope you all had a wonderful holidays and we wish you all the best for 2012.

Julia had a good holidays and remained well......thank god. It was confirmed over the holidays that Julia will need a minimum of 4 cycles of CTL therapy in NY. We are leaving for cycle 2 on January 11. And will need to go back in Feb, Mar, and April. NY doctors will not know if the therapy is working until just before the 3rd cycle. They have started growing Julia's own cells and hope they will be ready by cycle 4. I am having a very hard time knowing we have to keep going back to NY since I did not do well there. Anthony is devastated that we will be leaving again and life just seems really all over the place right now. Impossible to have routine, stability, or any type of normalcy right now for all of us. Including for my parents who are at our beck and call trying to help both me and the kids right now. They were suppose to be in Florida enjoying their time and because of the situation are unable to go.....I feel horrible. In the past 5.5 years I have been under an enormous amount of stress and always managed to hold it together just fine. Something about being in NY triggered something for me and to be honest I am having a very hard time coping right now. I'm trying to figure out what it is but just don't know what it is. It may just be the whole situation and the extreme exhaustion catching up to me. I only hope that I start feeling better and coping better some time very soon.

To all my dear friends, I apologize for not being in touch and I know your all very worried about me but right now I need to work through this and get strong for Julia's sake. And most times I just can't talk about things anymore. Please know that I love you all and appreciate your concern but I will be fine once I take some time for me.

I will keep you all posted on how Julia does with cycle 2 in NY. Please pray for an uneventful trip to NY and a quick return home.

Thanks
Nadia

Happy Holidays

2011-12-25T18:36:00.001-08:00

Wishing you all a very Happy Holidays from our family to yours.

The Morreale Family

Home Sweet Home

2011-12-18T17:00:00.000-08:00

Hi Everyone,

We are finally home and with no surprise our last 5 days were not uneventful. As I mentioned in my last post Anthony was sick on Monday.....well Tuesday Julia was sick. Unfortunately due to her medical frailness she was admitted to Sloan as an in patient. She remained in patient until Thursday night so needless to say her cell infusion which was suppose to happen on Wednesday was bumped to Friday. And for those of you doing the math....yes we missed our flight home!! We had to change our flight to Saturday in order to get the last cell transfusion Friday. We are expected back in NY the second week of January for cycle 2. Really don't know how I'm going to get through it.....

It was quite the experience and really not what I expected. It was longer and much harder than I ever imagined. We met some great families with of course sad stories and unfortunately they were not as luck as us to make it home for Christmas. I hope all of them can find some way to have a wonderful Christmas despite being separated from their families......and the Ronald McDonald House will make sure of that. I can not take anymore of the sad stories. I get far to emotional and want to help all but being at the house I realized I can not possibly help everyone despite wanting too.

Julia has recovered from her gastric infection and is due at Sick Kids on Tuesday for follow up. She is booked to have a PET/CT on Dec 29th to see if disease is; gone, stable, or has progressed. NY doctors don't expect to see much change after only one cycle. Unfortunately we will not know until the beginning of cycle 3 if and how well this treatment is working, or even how long my cells are lasting. The idea is the longer my cells last the longer she can go in between cycles. This whole process is much more than we all bargained for. It is intense, long, with really no immediate answers. NY is talking about just keep going and going. Even talked about Julia's own cells potentially being ready for cycle 4. After seeing my bill for only 1 day I don't think we can keep going and going. I will speak with Julia's doctor here and together we will decide what to do long term.

On a positive note Julia's primary doctor in NY is amazing. Very similar to her doctor here and that definitely made things easier for both of us. She even called us today at home to make sure we made it home ok and that Julia was feeling ok. The whole team we dealt with really were unbelievable. I'm still very happy to be Canadian and have health care, but it really will blow your mind at the advancement in the US. From big things like test availability, quick results (things that take us 3 days to get back here are back in 3 hours there), resources, blood tests (we've had a lot of blood tests and there were ones I had never even seen before), to simple things like parent lounges and kitchens with free coffee, cappuccino, and juice machines. To the incredible clinic and in patient food system.....pick up a menu, fill it out for everyone with you, and drop it in the box with the time you'd like to eat and your meal is delivered right to you.....and good food......no "meal train"(u sick kids families know what I'm talking about!!!)

For now I really need to re group and relax, and figure out why NY was so hard on me.

I'm grateful and excited to spend a quiet holidays with my family and will think about the trip back to NY in the New Year.

I will keep you posted as I know more.

Thanks for your continued support it is very much appreciated.

Nadia

Quick Update from New York City

2011-12-12T10:06:00.000-08:00

Hi Everyone,

I apologize for not updating the blog more often(that really was my intent), but this process has been much harder than anticipated and has really taken its toll on me both mentally and physically. Most of my energy each day is holding myself up and making sure I have no more ER visits (2 was enough for me). Not quite sure what has put me over the edge but whatever it is it has me weak, tired, sad, anxious, and I spend most days crying uncontrollably when I'm alone. The thought of coming back here in 3 weeks gives me heart palpitations. I think I'll need to get on some good drugs before going through another cycle.

Elio, my dad, and the kids arrived Friday and we spent Anthony's birthday here in NY together. It was so good to see the kids but quite honestly I did not have the energy for them. We did central park, Rockefeller center, and Times Square - and that's about it - they were done after all that. Anthony went to the NHL and all the toy stores and picked out his birthday gifts. The Ronald McDonald house even got him a whole bunch of gifts and we got him a big ice cream cake to share with the house. The house even gave him and Elio tickets to last nights NY Rangers game. Now he thought that was the coolest way to spend his 8th birthday. Unfortunately he spent all night and all morning throwing up and is crawled up in bed and has to board a plane in a couple of hours. Poor baby I hope he feels better soon, and that Julia doesn't get whatever he's picked up. The countdown is on.....% more days till we come home.......I need an uneventful 5 days. Julia will have her last cell transfusion of the first cycle on Wednesday. She will go back in on Thursday for her final lab work in NY and than off we go Friday back to Sick Kids and they will do the remaining tests over the next 3 weeks. After that Sloan would like to see her back her the 2nd week of January for cycle 2. Can't talk about this right now.........

I will try and update you all after Julia's last cell infusion. Otherwise we will talk to you all when we return. Your thoughts and prayers and words of encouragement are always appreciated.

Nadia

Update from New York.....never a dull moment!

2011-12-05T15:44:00.000-08:00

Hi Everyone,

I will start by letting you all know that Julia is doing well. She has handled her 1st cell transfusion like the trooper she is and all her monitoring last week was good. She will have her 2nd transfusion on Wednesday and we are hoping and praying everything goes just as well.

Well for those of you who follow my blog you know that a week in NY could not go by without some sort of drama................On Saturday we were scheduled to visit some family in New Jersey. They had ordered food for our arrival and were even coming to NY city to pick us up, but we never made it there. I woke up on Saturday morning and went down to the kitchen to make myself a pot of coffee (like I do every morning). I met a mother in the lobby who was also from Toronto and who was going home that day. As I was talking to her I felt a little funny, didn't really know what just not feeling that well. We exchanged numbers and walked to the elevators together. As we were waiting at the elevator I told her I wasn't feeling well and apparently turned around to get to the chairs and down I went like a sac of potatoes. Fainted in the lobby of the Ronald McDonald House. The staff immediately called 911 and the paramedics rushed me to New York Hospital. The lady at the front desk called our room and told my mom she needed to come down to the lobby as they had someone who fainted. She left Julia in the room (alone) and ran down the stairs from the 6th floor. She said as she got to the lobby there I was on the floor. The paramedics insisted on taking me to the hospital as my blood pressure was really low. Julia was still connected to over night hydration and my mom does not know how to disconnect her. So as the paramedics are shoving oxygen prongs up my nose I'm worried about Julia and her hydration. Thankfully one of the mom's at the house went to disconnect Julia as I went off to the hospital. When I got to the hospital they were waiting. I could not believe how unbelievably fast things were. They did an ECG, put in an IV, started a bolus of fluid to get my blood pressure up and the doctor had already come in to see me in the first 10 minutes....talk about good service! My blood work was good and there were no major concerns. They believe I was dehydrated, exhausted, and that the stress caught up to me. Once they gave me fluid my blood pressure returned to normal and I felt better. They got me out of there as quick as they could. I felt very weak the rest of the day so I just crawled into bed and rested. I sure did scare the crap out of myself and my mom...who after I was feeling better gave me so much shit!! She says between me and Julia we are going to kill her!! I am feeling better but am so home sick and feel like I've been here forever.

The house is really good to the families and they always have something going on to keep the kids busy. Tonight is a pizza party in the playroom with Santa gifts and pictures. They also offer free Museum tours to the guests so I am hoping to take Julia one day this week or next. We will be at Sloan all day Wednesday and Thursday for sure and quite possibly Friday depending on counts.

I will keep you all posted on how the 2nd cell transfusion goes this week. I apologize for not contacting any of you but this has been much more difficult than I expected.

Thanks for all your support and prayers. Please keep Julia in your thoughts and prayers as she goes through the 2nd cell transfusion.

Nadia

Update from New York

2011-12-01T17:53:00.000-08:00

Hi Everyone,

We arrived in NYC on Tuesday night after a very, very bumpy ride. I was terrified and puking in a barf bag the whole way here (longest hour of my life). Julia on the other hand was laughing her head off saying "faster, faster this is so fun". My little 6 year old rubbing my back telling me it was going to be ok. What a trooper!
After an interesting encounter with our first taxi driver in NYC who brought us to the wrong place and started taking our bags out of the car, as I was telling him he couldn't leave us there it wasn't the right place, we finally arrived at the Ronald McDonald House.
Early Wednesday morning we arrived at Sloan Kettering to start the next part of our journey. Everyone was ready for us and welcomed us with open arms. It was so overwhelming and things are quite different here than at home. Julia had about 30 tubes of blood drawn, her exam with her new doctors, and then at 2:45 Julia's first cell transfusion took place. The doctor hand delivered the cells and transfused them herself. As she was infusing them she told Julia "here are mommy's cells, she worked hard for them Julia". It was unbelievable to watch. The infusion was very fast but there was a 4 hour monitoring period after infusion. My heart was racing and I don't think I've ever been so scared. The pre meds knocked her out and I sat by her bed watching every breathe she took wondering if my cells would hurt her. She did very well and doctors were pleased. We were back there today for blood work and everything looked very good. We need to go back tomorrow for clinic and hopefully everything will still be ok. Julia is feeling good right now. Interestingly, on Wednesday morning before arriving at Sloan Julia's oncologist emailed me to inform me that Julia's EBV test from last week is positive for EBV in her blood. This is what we were waiting for all this time to qualify for trial. So looks like now was the right time to come to NY......strange how things just seem to fall into place.

The house................I am having a very hard time adjusting to the Ronald McDonald house. It is very nice and the people here (both families and staff) are very nice but it is so very sad. The house is at capacity (84 families) and a lot of these families have been here for months and months. There are even quite a few that have already been here for a year and still have a year to go ( I can not imagine this). I can not handle all the sad stories and most of the families who have been here so long can't even afford to buy food.....break my heart. Tonight the house celebrated the start of the holidays with the lighting of the Christmas tree in the lobby. The kids sang songs and Santa came to visit. There were speeches by all the suits about how this is the "house of hope" and how in here the house tries to let them be kids first not kids with cancer. I was crying the whole time and couldn't believe I was even here. Never in a million years would I ever have thought we would be in a position like this. You can't even imagine the world that exists in here.....its the stories you may read about but never really know about, and I feel like I am living in a very bad dream.......and that if I pinch myself hard enough it will all go away.

Julia's second cell infusion will be on Wednesday and than the last one on Dec 14th. If all goes well we hope to be home on the 16th, but the doctor has already told us she believes Julia will benefit from another cycle. This would mean we would only be home for 3 weeks and than need to return. .....can't even think about that right now.

Its only been 2 days and I am unbelievably home sick. I miss my kids tremendously and can't stop thinking about them. I miss my house, my family, my friends and just my life back home. Simple things that most people really take for granted (including myself before all of this). We feel so lost here. We haven't had any time to do anything in NY since we've been at the hospital most of the time but we hope to be able to do something fun over the weekend.

For now I am so grateful that Julia is well and seems to be handling everything very well. I pray almost every hour of every day that she can get through this with no complications and we can return home soon.

Thank you for the unbelievable support I have received from all of you. I will continue to keep you posted on how things are going here in New York City.

Nadia

Heartbreaking News........Off to New York for Trial

2011-11-23T18:13:00.000-08:00

Dear Family and Friends,

It is with great sadness that I tell you that Julia has relapsed....again. On Monday doctors confirmed that the biopsy of her throat confirms that the PTLD is back. It is at a very early stage which is good. What is strange is that Julia remains EBV negative in her blood so it was a big shock to learn about the relapse. We have spent the last couple days trying to gain more information. She went into the OR for a gut and colon biopsy yesterday and today she had another PET/CT. The results for the biopsies will take a couple weeks. Today's PET/CT was very similar to the last - it uploaded in the throat although the findings in the lungs were worse than seen 4 weeks ago. We are not certain as to what this process is in the lungs - is it disease or is it infection? At this point it doesn't make much difference since we already have a positive biopsy. There have been numerous discussions taking place between us and the doctors and between the doctors here and the doctors in NY. The big question was do we go to NY? Since it is not under the circumstances that we expected to go to NY there was a go/don't go feeling. There was one strange thing from the biopsy which had doctors wondering if this was the right time. Along with the b cells (which have always been seen in the past), the pathologists also saw a number of T cells which is making everyone nervous. Unfortunately the medical world is not always sure what T cells mean when looking at cancer. Tonight Julia's oncologist confirmed that NOW is the time to go to New York. Although I think everyone is a little nervous they've decided to send us. Therefore we are leaving on Tuesday for New York and the trial (the first cell transfusion will be Wednesday). Doctors are trying to get us home tomorrow so we can spend some time as a family before going. So the plan is to try and get out of the hospital tomorrow, come back Saturday for bloodwork, and than be back Monday for the final tests prior to leaving.

I can not begin to explain how I am feeling right now. Completely overwhelmed and terrified. I only have a few days to get things organized and more importantly spend with Anthony and Emily so I can not be in touch with anyone. I will be gone for Anthony's birthday on the 11th and he will be devastated. Depending on how Julia is feeling we will try and bring the kids down to NY so we can spend Anthony's birthday together. Our lives have been a nightmare the last few years and seems we just cant catch a break. This disease is like a ticking time bomb that just keeps gaining power. I am feeling like the walls are closing in on us.

I wish I could say more but really I dont have the strength to discuss this any further...my head is going to explode. I will update the blog from NY and hope to have nothing but good experiences to report. Thank you all for your continued support and please keep Julia in your prayers. May God give her the strength to continue fighting.

Sincerely,

Nadia

Update On Julia

2011-11-17T10:08:00.000-08:00

Julia was discharged on Sunday afternoon after receiving her blood transfusion and being monitored for a few days. On Monday night she spiked a fever. I organized drawing blood cultures and counts from home and sending it to the lab. It showed that despite being on the GCSF injections she still remains neutropenic (no counts). Her oncologist was so kind to bend the rules and allow us to remain home and follow from there. But by yesterday fevers persisted and it was time to come in......there was no more rule bending. So last night she was re admitted to Sick Kids and is under going further investigations. We had consults with both GI and ID today and everyone is sitting tight for last weeks biopsy results. There seems to be a very big concern or hunch that we could be looking at disease. Julia remains very weak and tired and it has been decided that its time for a feeding tube. So we will put it in and hope that she doesn't pull it out. We need this (and trust me this was a last resort), to get the calories in and help her gain some weight and feel stronger.

Saturday is Emily's birthday and I am so sad that it looks like Julia will be here. This will be 2 of 3 years Julia has been in hospital on Emily's birthday. As most of you know this has been an unbelieveablly tough ride the last 2 months and there seems to be no end in sight. I am worried, stressed, frustrated, sad, angry, and feel so displaced. The back and forth to and from the hospital, the luggage I keep packed at the side of my bed, the constant goodbyes to Anthony and Emily its becoming all too much to bare. I pray everyday that we are able to find out what is causing Julia to be so unwell and we can fix it soon.

I will keep you all updated on the situation as I can.

Thanks for all your support.

Nadia

Back At Sick Kids

2011-11-13T05:40:00.000-08:00

Hi Everyone,

Julia is once again back at Sick Kids. In my last post I told you that she wasn't feeling well on Thursday and had spiked a fever Wednesday night after her biopsy. After speaking with her doctor it was decided that she should have cultures drawn and a CBC. So we arranged for the bloodwork to be done here at Markham Stouffville through her pediatrician. The office called with results and Julia's hemoglobin had dropped from 87 on Wednesday to only 71 (70 is transfusion). I immediately contacted her oncologist and as always she responded immediately. She agreed that this was a huge drop and gave me the option of going in to emerge or waiting till Friday morning and seeing her in clinic. I told her I was a little worried about the drop and the possibility that it could drop even further overnight. Her response "if your worried that's my cue to bring you in now, I'll call the fellow and let them know your on your way". So we packed a bag and off we went......thank god. When we got to emerge and rechecked her bloodwork her hemoglobin had dropped to 62 (down by almost 10 in 7 hrs). The panic began.......was she bleeding internally? Where was she losing this blood?). The doctor ordered blood and they transfused her immediately. The transfusion took 4 hours and I saw every minute of every hour all night. They re checked her blood as soon as the transfusion was done and her hemoglobin increased to 96. They rechecked it 2 more times that day and it was holding steady. ENT came to see her and confirmed that there was no way the procedure she had would drop her hemoglobin by that much that fast. They ordered an ultrasound of her belly and thankfully saw no blood or bleeding in her belly. What they did see was that her spleen is 2cm bigger than it was 2 weeks ago...........this could be big trouble.

Some good news...............Julia had a great day Friday and yesterday. After getting the blood transfusion she perked up and had tons of energy even ate a little. I haven't seen her feel this good in a long time. The hope was that they would let her go home yesterday but doctors did not agree with my plan. We will try and get a discharge today.

Its been a very very tough couple months as I watch Julia deteriorate with absolutely no answers. In the past she gets sick, we know why, we start treatment, and she gets better. This time its been watching her get sicker and weaker and have more issues each week with not being able to find out why. I am beyond frustrated and extremely worried about where things are headed. We can't get more than a week at home, and the worst part is that she develops new and different issues each time. I really feel like things are spinning out of control.

NY has confirmed that my cells are ready and have been frozen. They are waiting to hear from doctors here about Julia's EBV status. This week's EBV remains negative so we've bought ourselves at least another week. I told Julia's oncologist that I need her to stay negative until we figure out what is going on or at least she's feeling better and stronger. Can't imagine running into all these problems in NY. Wonder what a blood transfusion would cost there.....scary. We haven't even gotten there yet and you would not believe the stack of bills I've received for my cell donation....its absolutely crazy and makes me very thankful to live in Canada and have health care.

I am an emotional, nervous wreck right now and apologize for not responding to all your messages or being very brief in my responses. I need a little time to sort things out and most importantly need to have Julia home and feeling well.

I will keep you all posted on how she's doing and please keep her in your prayers.

Nadia

Biopsy Done.....Now We Wait for Results......

2011-11-10T06:37:00.000-08:00

Hi Everyone,

Julia had her biopsy yesterday and all went well. She is in a lot of pain but recovering comfortably at home. It was a very emotional day yesterday as we waited and watched Julia cry about having to go into the OR. Her surgery was delayed by an hour which made things even worse for all of us. She cried and begged us not to send her into the OR. She kept asking for the "white, sleepy medicine". As she was doing her pre op assessment her temp registered 37.6 (border line fever for her). The nurse looked at us and said the anaesthetist may not bring her into the OR with a temp. She was not feeling well and I could see something wasn't right. The anaesthetist came to talk to us and I explained that this was the reason we were doing the biopsy (too find out why my kid was always sick and has fevers). The interesting thing is that Julia finished her oral antibiotics on Monday and as always 48 hrs later here came the fever. Everyone agreed that the benefits of going forward out weighed the risks. So Elio geared up in OR wear and walked her into the OR. We both walked her to the big OR doors and than I could not go any further. I watched as Elio carried her into the OR as she reached her arm out to me calling for me in tears. My heart broke as I totally lost it in front of the OR doors. I have been through this so many times but yesterday realized that this never ever gets easier and I can't take one more visit to the OR. The OR staff reassures you that they will take good care of her but really to hand your child over to strangers and not know what will happen in there is absolute torture and in my eyes we've done it enough.....NO MORE. As we were sitting in the surgical waiting room a family right beside us was pulled aside and told that something went really wrong in the OR with there daughter and doctors were working frantically to stabilize their child. The mother just about passed out and was shaking in disbelief. This is the first time ever in all my times waiting in the surgical room that I have seen this happen. I started to panic and realized that even in the simplest procedures with the best doctors anything could go wrong. Needless to say that it was the longest wait ever after seeing what this other family was going through. Finally after an hour and a half the doctor came out. He had actually taken pictures of the surgery (and boy were they hard to see), and showed us what he saw. The good news is that once he went in he did not see a mass (which he was expecting to see based on the CT), he did see an area on the side of the throat that looked abnormal so he took some samples and sent it to pathology. He also took some samples of other areas just to be sure. All in all he felt like it was good news that there was no obvious mass. Now we sit and wait for pathology results, which will take approx. 2 weeks.....torture. In the meantime Julia remains unwell and no one knows why. As I mentioned she wasn't feeling that well before the procedure so after was even worse. She was tired and complaining of stomach pain. Her oncologist decided to draw cultures and give her a dose of IV antibiotics to protect her for 24 hours in case she spiked a fever. And boy does she know Julia.....last night she spiked a fever...again. She remains unwell this morning and still has a fever so I will contact her docs and see what to do next. It was decided that she will go back on oral antibiotics until we have the pathology results. So once again she has to take more antibiotics (which she hates). We are also meeting with Infectious Disease next week to hopefully get some guidance from them. All these antibiotics can't be good for her. The other piece of news we got yesterday is that Julia finally has some of her B cells back (about 20%), therefore her oncologist will contact Texas about growing her own cells and shipping them to us for the future. Now that she has B cells the possibility of the EBV returning is higher therefore we tested it yesterday and await the results of that. If she's positive she will be ready to go to NY. I hope she remains negative long enough to figure out what's going on and hopefully get her better.

I realize that going to NY is where we need to go but you have no idea how lucky we are to have an oncologist like we do. This lady is the most incredible person I have ever met. She's not only brilliant but caring, compassionate, and kind, and she goes well beyond her call of duty and is always there for us. I don't know if I could do this and remain sane without her. She is the closet thing to God I have right now in my life. I trust her completely and value her expertise. She really is a saint. I will miss her while we're gone and wish we could bring her to NY with us. She has a calming about her and always makes me feel comfortable. I don't know what we will get in NY. The good thing about her is I know she will remain in contact and be checking up on Julia while we are there cause that's just who she is and what she does for her patients....incredible person.

As we wait for the EBV and pathology results I will be a little insane these next 2 weeks so bare with me. I know I have fallen off the radar with most of you but please know I think of you all and appreciate all your support.

I will keep you all posted on Julia's progress and the results once they are in.

Nadia

Quick Update

2011-11-03T18:40:00.001-07:00

Hi Everyone,

Julia was at the hospital yesterday and it was a long intense day. It started with what I thought was just going to be a an ENT(ears, nose, throat) consult but to my surprise it was much more. Two doctors entered the room and proceeded to tell me that the CT shows something in the throat and its the same spot that uploaded on PET. I said you must be mistaken it was the PET that lite but CT showed nothing. The doctor left and re looked at that scan (at my request) and came back and confirmed that the scan shows that the right side of the throat is bigger and there's a ball like shape. He wasn't sure why the radiologist did not comment on this in the report. The next thing I knew I was being told Julia needed to have a biopsy to rule out disease. Her ENT doc was leaving that night and did not feel the surgery could wait so had already made arrangement for another surgeon to do it. In he came to introduce himself and have me sign all the consent forms. Therefore Julia is scheduled to go to the OR (AGAIN) on Wednesday morning. They will go in and look at the spot and take a sample to send to pathology. The pathology reports normally take up to 2 weeks to come back..........so needless to say the next 2 weeks will be agonizing. Then we headed to Oncology clinic and Julia has lost another 2 lbs. She is dropping weight so fast and has become so frail and weak. We are all concerned about the weight lose and may have no choice but to put in a feeding tube (Julia will absolutely hate this). The speculation of what this could be is driving me crazy.............is it a relapse of her PTLD? is it a new full blown Lymphoma? is it ebv negative PTLD? or is it nothing?

Julia's potassium was really high yesterday so we had to repeat it today and instead of driving all the way downtown we decided we would check it locally. To my surprise Markham Stouffville does not draw blood from a PICC line. So I had to go to Markham Stouffville and draw the blood myself from her line (I've never done this before) as the lab techs stood and watched me.

Things are very crazy right now as my days are consumed with taking care of Julia, trying to get food in her and my new job title....nurse!!! Absolutely crazy that 6 years ago if Anthony fell and scrapped his knee I would freak out and today I spend my days flushing Julia's PICC line, hooking up hydration, holding her down as her nurse gives her the injection (brutal), and now drawing blood and putting it in tubes......crazy life.

I will keep you all posted on how she does next week.

Nadia

New look

2011-11-02T10:40:00.000-07:00

Hi Everyone,

I administer the blogsite for Nadia, and I just wanted to welcome you to a new look!

I have removed the messages gadget because it was being spammed so frequently, it wasn't even useful anymore. Please leave all messages in the COMMENTS section of each post. Comments are always appreciated. They let the family know that you are thinking about them, and Nadia can pass on your love and well wishes to Julia.

There are a few new additions to the site. You can join the Let's Help Julia Group on Facebook, the link is on the left side and now you can sign up for Nadia's updates through email. You can also use your Google account to follow this blog.

As always, thanks so much for your support in Julia's fight.

Take care,

Ida

Home Sweet Home.....

2011-11-01T07:55:00.000-07:00

Hi Everyone,

I am happy to report that Julia was discharged Sunday afternoon from Sick Kids and more importantly has remained home! She is still not quite herself but we are still trying to work that out. She is on overnight hydration and receiving daily injections (which her home care nurse is giving), to try and boost her counts. She will be back at the hospital tomorrow for an ENT consult, bloodwork, and clinic. We will see tomorrow's results if the injections are working. She may also require a blood transfusion tomorrow as her hemoglobin remains very low.

Julia's heart biopsy came back showing minor rejection (this is expected in every transplant patient). The good news is that its nothing serious that requires intervention. Her PET/CT showed some small lymphnodes in her lungs that also lite in the PET scan but doctors believe this may be from the pneumonia she had a few weeks ago. We have moved her to oral antibiotics for a 2 week course and will re scan her after this to see if there is any improvement. The puzzling piece is that her PET scan lite in her throat although CT did not pick anything up in that area. So once again doctors don't know what to do with this piece of information. Therefore we are seeing ENT tomorrow to see if then can shed any light on the situation. Especially because Julia is still not eating and is losing weight quite quickly. Hopefully they will have some ideas for the team. She will also have some special Rheumatology bloodwork drawn tomorrow to help guide doctors. Everyone is working hard to try and figure out what is making Julia feel so unwell. At this point they are thinking out side the box and running whatever tests they can to help them. Her bone marrow biopsy also showed that she is iron deficient and this is why her red blood cells are so low. Her last EBV remains negative which means she is not ready to go to NY. Sloan Kettering is ready for her and now we wait until her EBV becomes positive and off we go. At this point we test it weekly and wait for a positive. It may have been a blessing in disguise because I can't imagine being in NY while shes been so unwell. I just hope they figure out what's going on before we need to go to trial.

Although we are home things are far from normal. I feel like we went from being a prisoner in the hospital to a prisoner in our home. Julia is not well enough or strong enough to go out (nor can she be around anyone due to germs), home care is coming in daily, I have to hook her up to hydration every night, and it takes me 2 hours to convince her to eat. Even after the 2 hours I can only manage a bit or two of toast. At this point my days are consumed taking care of Julia and trying my hardest to help her feel stronger.

I apologize for once again being very distant from all of you but this latest hurdle has really taken its toll both physically and emotionally. I appreciate all the positive thoughts and encouragement but I'm finding it very hard to remain positive and optimistic at this point. I can not even begin to explain the fear I am feeling as I watch Julia deteriorate in front of my eyes. And cant help but worry that if we don't figure this out soon or Julia does not start to improve we could be headed for trouble. Part of me is also angry............angry at the constant battles that are thrown her way.....its just not fair. She has missed so much in her short life and instead of moving ahead and getting back some sort of normal life for her we continue to take steps back each year. It is already November and Julia has had 3 days of grade 1......another year passing her by.

I will continue to keep you all updated and hope and pray that in my next post I will be able to tell you all things are back to "normal" and Julia is back to herself. Thank you for your continued support.

Nadia

What a Night...............

2011-10-24T05:04:00.001-07:00

Dear Family and Friends,

I would like to start by thanking everyone involved in organizing Julia's event Thursday and of course everyone who came out to support us. It was a fabulous evening filled with wonderful entertainment from Brian. It was very overwhelming and emotional to see how many people came to show their support and how we live in such a great community that really cares. To the many people involved in planning the event (who didn't even know our family), we are truly touched at all your hard work and generosity.

Now to Julia..........most of you weren't aware that Julia was discharged late Thursday afternoon and after only a few hours home and as I was scrambling to get ready for the event she spiked a fever. So as the show was going on I was on my blackberry communicating with her oncologist and my sister who was watching her. We managed to get through the night and I brought her to clinic Friday morning. No surprise..............she was readmitted to Sick Kids. We got less than 24 hours at home. She was scheduled to have a heart biopsy on Friday but earlier in the week cardiology postponed it a week to this Friday to give her some extra time to get better. Well now doctors are sharing our frustration with the constant admissions. It has been 5 weeks that we have been in and out (mostly in) of hospital. Therefore after many discussions and back and forth emails we have a plan. I got an email last night at 6pm telling me that Julia will go to the OR this afternoon for her biopsy. Although it is unlikely that all of this is related to rejection you just never know with Julia and no one is taking any more chances. She will also have a PET/CT (hopefully tomorrow or Wednesday) to look for disease or infection. The Infectious Disease team believes we may be missing an infection that is deep and that's why when she is on IV antibiotics her fever goes away and she feels better, but the minute we take her off she is unwell again. They are hoping the PET will light up in any areas of over activity and this will guide them on where to go.

WAIT....it gets better.....on Friday while in clinic waiting for a room I started feeling really sick. I tried to hide it but the nurses and docs could see something was wrong. I was alone and started to panic so I finally spoke up and told them that I had an excruciating pain in my back/side. Julia's doc advised me to go across the street and check it out cause it may be my kidney. Of course I did not go and just popped some Advil and Robaxecet and was hoping it will all go away. Quite the opposite within hours I could not walk and it hurt to even breath. My mom took me to Women's College and we waited 5 hours in emerge just to be seen. As I continuously called Elio too check on Julia. After waiting 5 hours the doctor comes in and says it could be stones or a pinched nerve and could I come back Monday for an ultrasound and CT. I looked at him and just about bit his head off. I said listen I can't come back Monday as my daughter may be having her scans on Monday so give me some drugs to help with the pain and let me get back to my daughter. He prescribed me a muscle relaxer and pain killer which basically knocked me out all weekend. The good news is that I am feeling a little better, the bad news is I can't take the drugs because I need to be able to function in here so lets hope the pain doesn't come back. Julia's situation is really taking its toll both mentally and physically on all of us. I really want to go home with a healthy child and live some what of a "normal" life.

It will be a busy week in here as we make another attempt to figure out what is going on. I will keep you all updated as I know more. For now please keep Julia in your prayers.

Thanks for you support.

Nadia

Luck Just Not On Our Side..........

2011-10-16T11:55:00.000-07:00

Hi Everyone,

I'll start by telling you that Julia had been feeling really well the last couple of days so the plan was made on Friday to get a day pass for Saturday and see how she did at home for the day and than discharge this morning. She came home yesterday and started off fine but as the day went on she changed. She became more tired and started getting warm. Headed straight back to the hospital and when she arrived her temp was 37.6 - not bad but not great. Well this morning at 4am Julia spiked a fever.....6 hours before her scheduled discharge. So of course no discharge for us and back on IV antibiotics - the Sick Kids cocktail. I am so unbelievably frustrated and don't know what more to do.

The bone marrow results that are reported (some still not back)show that she is producing cells but they are being destroyed somewhere (same as last time). There are some elevated T cell clones seen in the marrow but unfortunately doctors don't know how to interpret these results. So we know that this isn't normal but don't know the link between this and everything going on. As an institution (and actually in the whole medical field) they do not have a good understanding of T cell clones in Julia's situation. The MRI showed that there is no hemorrhage or mass in the brain (thank god), all good news. It did however show an abnormality that is seen in kids that have been very unwell or received chemotherapy. Given that this was Julia's first head MRI there is nothing to compare it to. So basically another piece of information we will keep in our back pocket and follow. So incredibly frustrating to go through a number of tests (which all show something) and still be no further ahead. It is not any ones fault and doctors are always working hard to put the pieces of the puzzle together it's just not that easy. For now we are stuck in here longer on antibiotics. I will know more tomorrow when the team is back and hopefully I'll have more answers or a new plan. As you all know there is never a dull moment in our lives.................

Thanks for your continued support and I will keep you all updated.

Nadia

Tough Day

2011-10-13T07:53:00.000-07:00

Hi Everyone,

Yesterday was a crazy day. Julia had her bone marrow and LP yesterday and of course things weren't as smooth as we would have liked. Julia was NPO (no food or drink) in preparation for the OR yesterday. Once she found out she could not drink she started panicking. She said "mommy I'm not going to that room am I? Tell me the truth mommy. Don't send me to that room." She is so smart that she knows when she is NPO that normally means the OR. As she cried and trembled with fear, begging me to tell her the truth and asking me to promise her she didn't have to go to sleep I looked her straight in the eye and lied. As my 6 year old looked at me to reassure her everything was going to be ok I had to tell her she wasn't going to "the room". Talk about the worst feeling in the world to have to lie to her. She was so anxious that the anesthetist had to drug her before going to the OR. She was so stoned but still managed to cry and beg me not to leave her. I carried her in and they pushed the "sleepy medicine" as I held her in my arms I felt her little body become completely lifeless. I laid her down on the bed and could barely compose myself as I watched them mask her as I left the room. While she was in there the doctors told me that the pressures in her brain were really high. When they do an LP they check for pressure in the brain before taking the spinal fluid. The norm is below 20 and Julia's pressures were 43. Once she came out and went into recovery we were rushed to Optamology to check if they could see the pressure behind her eyes. Thankfully there was no pressure seen in her eyes. In the late afternoon doctors came with the LP results. Looks like she has Aseptic Meningitis (viral meningitis - not bacterial which is the really bad one). Now its figuring out how and why she developed this. There are multiple reasons starting from the simplest (a viral infection or drug induced) to very serious causes like an infection in the brain or PTLD. She is scheduled to have an MRI of the brain today to try and help doctors figure out what's going on. Thankfully she is feeling ok considering. The bone marrow results are not in yet and doctors are anxious to see them and see if it can give them any further answers. She will also have a CT of her chest to look for evidence of disease. This new finding doesn't really give us any answers with what is going on with her counts, kidneys, etc. it just gives us something else to deal with and worry about.....unbelievable.

I can not begin to describe how I am feeling. It feels like being repeatedly kicked in the head when your already down. Instead of moving forward and towards discharge it seems like things are getting more complicated everyday and this admission may be a long one. I am meeting with Julia's oncologist this afternoon to discuss our plan and she will have bone marrow results by then which we will discuss as well. If we're lucky the MRI results may also be back.

I will keep you all posted as I find out more but for now please pray that the MRI is good.

Nadia

Deja Vu

2011-10-11T18:12:00.000-07:00

Hi Everyone,

Well home didn't last long. I feel like it was yesterday that I was writing the very same post. Julia is back in hospital and things are crazy as usual. Julia went home on Wednesday night and continued to be unwell. By Sunday we had to bring her back to emerge and she was once again admitted. Her counts continue to be non existent and she remains very tired and weak. One new thing (like we need anything else), is that her kidneys are not functioning as they should be. Her kidney counts are 4x what they should be and she seems to be having some metabolic issues with her electrolytes. Looks like her body is producing too much acid. I had a long talk with her oncologist today and the doctors are completely baffled and admit they are missing something but what is it. It is not from lack of trying. They are working around the clock, consulting other doctors, dotting all their i's and crossing all their t's but are still scratching their heads. So the time has come to start searching. Julia will go into the OR under general anesthetic tomorrow for a bone marrow biopsy and a lumbar puncture (to check spinal fluid). They will look for disease, viral infections that could be suppressing the bone marrow, and a few other complicated things. This will be a brutal day as Julia does not always do well with anesthetic. These days are extremely heart breaking and emotional for me as I bring her into the OR and hand her over to the doctors as I watch them drug her to sleep as she screams and cries begging me not to let them hurt her. I give her a kiss good bye not knowing what will happen when I'm gone. Then I wait in the halls pacing and praying until they come out.........torture. After that she needs to have her CT that doctors were trying to avoid due to the excess exposure to radiation. The problem is she can't have the CT until her kidney counts come back to normal because they use contrast for the scan that is hard on the kidneys. We have involved Neuphrology (another team) to help guide us with the kidney problems. They have ordered a whole bunch of tests one which will include a special function test with nuclear medicine. And after all that she is booked to have a heart biopsy on October 21st. This poor kid has endured more visits to the OR in 6 years than we will in a lifetime. Julia also refuses to eat so we have started her on TPN (nutrition in a bag through her PICC line.....yum), as she has lost almost 2kg.

We spent yet another holiday in the hospital (Thanksgiving) but even though things are a mess right now I found myself thankful for a lot of things......Julia's strength, my other healthy kids, my friends and family, the wonderful team of doctors we have, the incredible support and kindness from all of you, and of course Julia and much more. So even in the worst of situations there are always things to be thankful for.

As you can imagine things are very busy, stressful and frustrating right now. Many of you have watched me go through this so many times before so you know I am completely emotional and physically exhausted right now and can't say much more than I have. I will update you all as I know more.

One thing I do want to mention is the benefit concert that is being held for Julia at Markham Theater on October 20th @ 7:30pm. There are so many wonderful people working so hard for this event and unfortunately with being in here I haven't been able to help much or talk to all of you about it. So I am letting you all know that the tickets are now on sale through The Markham Theater and we would love to see you all their to support Julia. Many, many thanks to all the people involved in this event. Your hard work, dedication, kindness, and generosity are very much appreciated and we are forever grateful for what you are doing for our family.

Sincerely,
Nadia

Update on Julia

2011-10-05T05:41:00.000-07:00

Hi Everyone,

Today we have a plan......home. Julia has improved clinically and is responding well to the IV antibiotics. Her counts continue to be bottomed out but she has been afebrile for 3 days now. I negotiated with doctors to let us go home and continue the antibiotics at home. Julia's nurse will come in twice daily to administer the IV antibiotics at home and we will come back for clinic on Friday for follow up. She will get an antibody infusion this morning called IVIG in an attempt to boost her immune system. Crossing my fingers she does not have a reaction and we get home as planned.

This has been an extremely hard couple of days as I have watched a 4 year old little girl lose her battle with this deadly disease. Last night a beautiful 4 year old girl died (2 doors down from us), as her poor little body just couldn't fight anymore. Julia and this little girl have been in hospital together over the last year and were neighbours a lot of times. Her mother hugged me so tightly the other day in disbelief. I just broke down, there was nothing I could say to this poor mother as she watched her baby girl slipping away. She sat on her bed crying and screaming making sure her little girl knew how much she loved her. The life in here is beyond explainable. And if you've never been touched by cancer you can not even imagine what these poor kids endure and than to lose the battle after fighting for so long and so hard is heart breaking. I can not bare to see one more innocent child lose their battle. I have seen more children die in 3 years than most of you will in a lifetime. As I sit here crying for that poor mother I am overwhelmed with fear. Fear that this deadly disease can strike at any time and despite the fight these kids give its not always enough. How could life be so cruel. The mother said to me yesterday "how do I leave here without her". That comment hit me hard as I could not imagine coming in with your child and leaving without them. I realized that as much as some days I am tired of this place and just don't want to be here, without this place would mean I would be without Julia. The thought is too much to bare. So no matter how many days we spend here or how many times we keep coming back I realized that as long as I'm here so is Julia. I have spent a lot of days in the past 5 years asking God WHY? Last night I spent it in Julia's bed holding her as tight as I could thanking God for giving her the strength and asking him to always give her strength to overcome what is thrown her way. I am a complete emotional mess today.

I ask that you all say a prayer for that little girl's family as they deal with the most devastating event life can bring. I pray that God gives them the strength to go on. My thoughts and prayers are with them all.

I will keep you all posted on Julia and how her time at home is.

Sincerely,
Nadia

Julia Back In Hospital

2011-10-01T14:43:00.000-07:00

Hi Everyone,

I wish I had better news but I don't. Once again Julia is back in Sick Kids. Julia had not been herself the last week or so and on Thursday afternoon her home care nurse noticed that something wasn't right. She found her heart rate low and blood pressure a little high. I called her oncologist and she asked me to bring her in to be assessed. As I was in the car I was thinking great another day wasted in emerge. Boy was I wrong. Within an hour of being in emerge Julia deteriorated and became very unwell. Doctors were scrambling to figure out what was wrong and everything was pointing to her heart. An emergency echo was done, high dose antibiotics were started and we were moved to the 8th floor. Julia continued to deteriorate overnight and into yesterday. She reacted badly to one of the antibiotics and vomited with every dose infused. Our transplant team came to see me and told me that there may be some subtle changes on her echo pointing to possible rejection. They ordered a special echo be done and if they saw the same changes they would rush her into the OR for biopsy. I stood over her bed panicking and pacing all day watching her heart monitor knowing there was nothing I could do, but prayed that my baby girl would fight. It is the worst feeling in the world watching your child deteriorate fast in front of your eyes and feeling so helpless. Last night cardiology confirmed that the echo was fine and her heart is stable. It was a huge relief.

Her chest xray is also still showing 2 spots in her lungs. The thought was that it was pneumonia but after a 10 day course of antibiotics the spots are still there and her symptoms continue. Now the team is focused on the lung issues. She is feeling a little better today and docs now believe everything may be related to what their seeing in the lungs. The fact that she improves once on high dose IV antibiotics after 24 hours tells them its bacterial and responding while on IV but once she comes off she gets sick again. There is some talk about a possible biopsy of her lung to try and figure out what exactly their dealing with. Although I am hoping this will be a last resort as a biopsy of the lung is extremely dangerous. As of this afternoon the thought is that Julia may require a full 2 weeks of IV antibiotics to totally clear the infection. It is the weekend so not much really gets done in here and talks probably won't pick up again until Monday.

I feel like I am living in a never ending nightmare. Every time I turn around there is some medical crisis to deal with. One of the nurses said to be yesterday that she doesn't think they've had a family here so much and for so long (3 years). We walk onto the ward and everyone knows us like family. We really have spent way too much time in this place. Even the cleaning crew, security guards, and Starbucks staff know me by my first name.....how depressing. My life is so chaotic. I am always cancelling appointments, plans, and shuffling Anthony and Emily everywhere. Poor Anthony had no idea until being picked up at school Thursday by another mother and told he had to go stay with Nonna again. I know the saying "God only gives you what you can handle", but honestly I'm not sure how much more of this life I can handle. Not sure how many more times Julia can battle back.

For now please pray that Julia continues to improve and we can get out of here soon. The lack of privacy, the constant pumps beeping, the every 4 hour vitals, the pathetic shower, everything about being in here is driving me crazy.

I will continue to keep you all posted on Julia's progress and hope that my next post will be a better one.

Nadia

Quick Update

2011-09-27T19:28:00.000-07:00

Hi Everyone,

Just wanted to let you all know that Julia's hospital appointment last week went well. Her counts showed a small improvement and I was thrilled with that news. The hope is that they will continue to go up. Her latest EBV results remain negative.....another good thing. At this point the talks of relapse have stopped and we're all sticking to the theory that its something viral. She went back to school on Monday and is very excited about that. We did make the decision to pull her off steroids in preparation for NY and she will need a heart biopsy in 4 weeks to make sure there is no rejection going on. We are all crossing our fingers that we have 4 weeks here in order to get the biopsy done. At this point she will continue to go to the hospital weekly for clinic, blood work and her cytogam infusions. I can handle this.......I just hope it can stay at once a week????

I will you keep you all posted on how Julia is doing.

Thanks
nadia

Update on Julia

2011-09-21T15:52:00.000-07:00

Hi Everyone,

Julia is home now and the fevers have stopped. However, her chest x-ray shows an infectious process going on in her lungs that doctors believe is pneumonia. She is on strong antibiotics and hopefully the repeat x-ray will show improvement. Despite having pneumonia she is feeling fine. Her counts have bottomed out pretty much across the board and doctors are extremely worried we could be looking at disease. She will be at the hospital tomorrow for follow up and if she is still neutropenic they are thinking of doing a PET/CT to look for evidence of disease. We may need to get to NY sooner rather than later but now with the pneumonia we will need to wait until the infection is gone. Sending Julia to NY neutropenic is not ideal this could open up a can of worms both medically and financially.

This has been a tough 10 days and I am feeling completely overwhelmed with everything going on. Starting to feel like no matter what we do it's just never enough. It's unbelievable how many bullets we continuously have to dodge.

Anthony is having a very hard time lately and is an emotional mess. I am trying to spend every extra minute I have with him. He is coming with us tomorrow to Sick Kids to talk with the Oncology social worker and hopefully this will help. I feel so bad for him and don't know what I can or could have done to make things better for him. My heart breaks for him.......

Will you keep you all posted as I know more. For now please pray that this is just an infection and nothing more.

Nadia

Julia admitted to HSC

2011-09-17T05:05:00.000-07:00

Hi Everyone,

I update you all from Sick Kids. Julia had a rough week with fevers starting Tuesday. We had to bring her into hospital everyday this week for bloodwork and cultures. Yesterday doctors decided to admit her since it had been 4 days of fever with no obvious source. She feels absolutely fine, its just the fever. The one thing that is very concerning are her counts. When she was here Monday for clinic her counts had taken a drastic fall and we were unsure why. Well, now she is once again neutropenic (no counts). This makes no sense considering how well she was while we were away. Its unbelievable how things can change so quickly. As you can imagine doctors are very concerned given her history and already talking about the possibility of the cancer being back. I apologize for being very distant this week. A lot of you have been contacting me to find out about our trip but this has been a really tough week. Its been really hard to come back from such an amazing trip where Julia was so well to being at Sick Kids everyday. And now this admission is a real kick in the face. I tried to negotiate with docs yesterday to let her go home and ride this out at home since besides the fever she's fine.....but obviously I lost the negotiation. They rushed her to u/s and bone scan yesterday to see if she had an infection in her bones since she was complaining of leg pain. The u/s and bone scan were both normal. The big mystery now are her counts. WHY the hell is she neutropenic???

The first week of school and poor baby only went for one day and poor Anthony has already spent the first week back at school being shuffled around. I called home late last night and poor Anthony was still up waiting for me to come home. Broke my heart to have to tell him I wasn't coming home. It is so hard to be back in here. I will try again today to get discharged....not sure I will win. I will keep you all updated.

Congratulations to all the winners of the raffle.

Nadia

Raffle Winners

2011-09-16T05:30:00.000-07:00

Here are the winners of the raffle:

47" Plasma TV - Cindy Tsang

IPad - Jeff Baxter

Camera - Michelle Williams

2 night package at The Hilton - Micheal Basio

1yr gym membership at GoodLife - Sonia Ricco

1 pair Blue Jay tickets (thursday's game) - Andrea Wexford

1 pair Leaf tickets (season opener) - Angela Cox

$100 Gift care to Markville Spa - Cinzia Colangelo

Manicure and Pedicure at Markville Spa - Lorrisa Bevosly

$100 gift card at Black Smith Bistro - S. Mizzi

$150 gift card to Ticketmaster - Tino Solarino

$150 gift card to Ticketmaster - Vince Abbatangelo

$50 gift card to Kelsey's - Gina Bianchi

$50 gift card to Kelsey's - Lisa

$50 gift card to Boston Pizza - Connie Colangelo

$50 gift card to Boston Pizza - Daniela Bonomo

$50 gift card to Moxie - Mark Kanhai

$50 gift card to Moxie - Pam Campagne

$50 gift card to Home Depot - Sal nuimage

$50 gift card to Home Depot - Sara Wright

$50 gift card to Cadillac Fairview - Mike Colangelo

$50 gift card to Cadillac Fairview - Erica Campagne

$30 gift card to Silver City - Sliva Livia

$30 gift card to Silver City - Peter & Laura Serravalle

$25 gift card to Starbucks - Peter Petralito

$25 gift card to Starbucks - Nina Andreozzi

$20 gift card to Tim Hortons - Andrew Rutherford

$20 gift card to Tim Hortons - Martin Menezes

Congratulations to all the winners!! I will be contacting the winners within a day or so to make delivery arrangements of your prizes.

We would like to thank everyone who supported Julia in buying raffle tickets and a very special thank you to all of you who sold tickets for us.

Thanks
Mary

Trip Of A Lifetime.........

2011-09-14T19:21:00.000-07:00

Hi Everyone,

We're back from Disney and the trip could not have gone better. All the kids had a blast and most importantly Julia remained well. From the minute we landed we were treated like royalty. The wish foundation really does make these trips unforgettable. We had front of the line passes at the Disney parks and never had to wait in line for character greetings. All the characters knew Julia was a wish child and made it extra special for her. She got to have a private meeting with Cinderella, Princess Aurora, and Ariel. It was so emotional.....I had the first melt down of the trip! To see her so happy and excited after all she's been through and quite honestly wondering many times if we'd ever even get her there was overwhelming. We have spent many years holding Julia back and this trip was quite the opposite. We let her experience it all and looking back I can't believe we did. For those of you who know her well she is fearless and she showed us that even in Disney. She rode all the roller coasters including space mountain even though the signs clearly stated if you have any medical conditions you should not ride. She went on space mountain with Elio and Anthony and the two of them came off the ride white as ghosts and ready to vomit and then there was Julia laughing her head off and saying again, again. I took her on this wicked roller coaster at Animal Kingdom that was in a mountain, in the dark, went backwards, and had a 80 ft drop. I was so scared my heart was pounding and I looked over at Julia and she was so excited. I kept trying to hold her as once the roller coaster took off I realized it may not have been a very good idea and she kept pulling away from me telling me "mom, stop holding me". It took my stomach hours to get over the ride. She insisted on going again and there was no way I could do it again, and Elio.....well forget it he's terrified. So we convinced Anthony to go......poor kid came off crying and sick to his stomach. Again Julia wanted to go but now we were left with no one to go with her. Of course Julia said she would go alone. She begged me to let her go. So I walked her to the front of the line put her on the coaster and off she went. It was the longest 45 seconds of my life......I can't believe I let her go alone. If we let her she would have kept going and going. The bigger the coaster the more she wanted to go. I took her on the Star Wars ride.....I had to shut my eyes and thought I was going to vomit right on the ride....not my daughter (the youngest on the ride) she was front row and loving it. This kid really is fearless.

Than we boarded the lovely Disney Dream and set sail for Bahamas. The ship was beautiful and full of characters. They have this huge water slide called the Aqua Duck and of course Julia went right for it. She wasn't old enough to ride alone but she tried very hard to convince the guy she could do it alone. Anthony wouldn't go without one of us and than there was Julia who desperately wanted to ride alone. She made Elio wait in line for over an hour and they were 30 minutes late for dinner the first night because she had to get on the water slide. Julia celebrated her 6th birthday our first night on the cruise. They gave her a special cake and all sang happy birthday to her. She felt like a princess. Happy Birthday to my beautiful, strong baby girl! The cruise also made this trip very special for Julia and our family. We arrived in our rooms and there was a huge fruit and cheese and cracker tray welcoming us aboard. That night there were a selection of cookies for a bedtime snack. Than we received a royal invitation to a private party. We got there and it was our very own private party with Mickey. The kids were beside themselves. They got to spend 45 minutes with Mickey dancing and singing. There was also a professional photographer there taking pictures. Than the day in Castaway Cay (Disney's private island), we got tickets in our room for complimentary rentals and snorkeling. On the last night there was a giant signed Mickey with a card and all the pictures the photographer took at the private party. There was also 3 Disney nap snacks for the kids. Hats off to the Disney cruise line for making this a very unforgettable and special trip for our family.

We are so grateful to Children's Wish for giving us this experience. It gave us memories we will hold in our hearts forever. It made us stop and realize what we've been through and really thank god for how far we've come. There will never be another trip like this one. This trip was exactly what we all needed. One week away from the medical world. It was so nice that for 1 week we did not have to think about infusions, chemo, bloodwork, clinic appts, nothing. We were just a "normal" family on vacation. I wish it could be like that all the time. Of course you all now Julia and it would be too good to be true if it ended like this.....last night we had to rush Julia to Sick Kids for high fevers. We spent all night there and they have no idea where the fevers are coming from. We had gone to clinic Monday (remind me never to go to the hospital the day after coming home from vacation, it was a real slap in the face....welcome to reality), and her bloodwork was a little off. Her counts had dropped quite a bit from 8 days prior. I spoke with her oncologist and she wasn't sure what to make of it. Could it be something brewing or was her EBV back?? They ran the EBV test Monday and we will have results by the end of the week. She started school Tuesday (the first day since April), and when she got home became very unwell (fever, lethargic, and complaining of leg pain). Her counts had dropped even lower last night in emerge and she is now border line neutropenic...again. She will have to go back tomorrow if the fever persists for more cultures and to re check counts. Although the fever is still there she is feeling better today and more herself. As shitty as this was to happen only 2 days home I thank her for waiting till we were home to get sick. I can't imagine what we would have done if this happened while we were away.

I will post pictures of our trip once I sort through the 700 pictures we took. I haven't had much time for anything (except taking care of Julia), since being home. I will keep you all posted on Julia.

I want to thank everyone who bought raffle tickets for tomorrows draw and wish you all the best of luck. Mary will update the blog with the winners once Julia draws the tickets.

Thanks
Nadia

Back from New York City

2011-09-01T06:41:00.001-07:00

Dear Friends and Family,

I am back from NYC and the cell donation is done....thank God. Our flight got out of Pearson and surprisingly was on time. We landed in NYC and the chaos began. We arrived at Sloan Kettering (a huge facility), and met with Dr Prockop who gave us a tour of the center and explained where and what Julia would be doing when she arrives. The center is beautiful and very kid friendly. It was intimidating, overwhelming and depressing. Going through any medical challenges is scary but to do it in a foreign place so far from home away from the doctors and nurses we are comfortable with is overwhelming. After the tour she walked us to the donation room to start the cell donation. The nurses were excellent and could see that I was extremely nervous. It took 3 nurses to calm my nerves and one of them talked to me the whole process to get my mind off things. Before I knew it the donation was complete. I did however feel very light headed and tired so they made me stay in recovery a little longer and pumped me with orange juice. They wrapped my arm up so tight it was cutting off circulation. My arm did hurt for a couple days. Once I was feeling a little stronger they let me go. It was unbelievable how not even 1 minute after collecting the cells the research lab was there to pick them up.....boy things move fast! Once I was done in the donor room we went back upstairs to have a meeting with Dr Prockop. She was wonderful....patient, polite, and very compassionate. She talked about the trial in detail and the possible side effects we could see, although reassured us that she will be primarily responsible for Julia's care and will make sure everything is ok. We discussed doing as much as possible in Toronto in order to keep our expenses down......it is crazy the costs in the US....they bill for everything, even a band aid. Julia will require a PET/CT and MRI of the brain before beginning trial so we will organize that at Sick Kids prior to leaving. My cells will now take 4 weeks to grow and an extra week to run some fancy test on them once they are ready. The tricky part with Julia is that we are not just trying to match her cells but also her donor heart.....very complicated way over my head. It is the worst feeling in the world to have to hand over Julia's care to a place I don't know much about and things that are way above my understanding and pray to God that everyone knows what they are doing. We will not have our transplant team with us and it makes me extremely nervous that the doctors we are dealing with are Oncologists and BMT doctors not cardiologists. I just hope they know and remember she's a transplant kid. Sloan Kettering has never had a heart transplant kid, Julia will be there first, which makes me even more nervous.

We met with our social worker at Sloan Kettering and she was also very helpful. She managed to get us in to Ronald McDonald house for the Monday night. The house is very nice and has tons of stuff going on for the kids. They have a huge playroom for the kids, and once a week they have field trips for the house, and 3-4 nights a week different organizations sponsor a dinner for the whole house. Monday night was Hawaiian night....a big bbq and smoothies for all on the huge beautiful terrace they have. Although the house is very nice and spacious for NYC, it was so depressing. To see all the sick kids and families that are all going through a medical crisis was a little overwhelming. Although the medical issues don't ever go away sometimes I don't want to think about them all the time but at the house its right there in front of your face 24/7. I was only in NY for 2 days and I was extremely home sick.....not sure I will cope well once Julia needs to go to trial.......I so don't want to go. The city is huge, confusing and chaotic. My mom and I will be lost. And there is no Loblaws in NYC!! The grocery stores are gross compared to what we have here. At this point I am trying to keep a clear mind and keep my head above water. I will focus on Julia's wish and worry about NY when I get back.

As most of you know we are leaving on Sunday for Julia's wish to Disney. The kids are so excited I can't wait for them to have this experience. After going to NY and seeing what we're in for I am so glad we were able to get Julia to Disney before going to trial....she needs it and definitely deserves it before going through another medical journey.

Julia is at Sick Kids tomorrow for a complete check up including all her tests before leaving on her wish. I will take lots of pictures and let you all know how her wish went.

Thanks
Nadia

Julia's Fundraiser

2011-08-31T17:50:00.000-07:00

Hi Everyone,

Julia finally is getting her wish trip to Walt Disney World and we are thrilled for her!

We wanted to take a moment and thank everyone who purchased and sold raffle tickets as a part of Julia's fundraiser. Unfortunately we will be postponing the draw to September 15 to allow for Julia to be there for it and for all the last minute ticket sales that have been coming in.

Your patience is truly appreciated.

Again thank you everyone for your support!

Mary

Off To New York City.....

2011-08-25T17:38:00.000-07:00

Hi Everyone,

After many many back and forth emails and conversations it has been decided that I will fly to Sloan Kettering in New York city and do my cell donation there. Donating the cells here and shipping them to NY proved to be extremely diff cult due to scheduling and regulations with Canadian Blood Services. So Julia's oncologist has made arrangements for Sloan Kettering to do the collection of my cells. Therefore I will fly out Monday morning for 2 days. I am scheduled to be at Sloan first thing Monday morning for the donation and also meet with doctors and case managers managing Julia's case. Getting flights with the hurricane expected to hit NY Sunday/Monday has proven to be chaotic.............much like the rest of my life. There are 365 days in a year and the day I need to be in NY there is expected to be a hurricane.......now if that isn't bad luck I don't know what is!! We tried to move around the dates for collection but it wasn't possible as the cell collection is a very complicated process to organize as many people are needed on board (from technicians to doctors to research lab techs). For those of you who know me well, you know I am terrified to fly so think of me as a board the plane and fly through the wicked weather we are expecting. My dad keeps joking with me that it will be a very bumpy ride on a small plane......yikes!! As you can imagine the last couple weeks have been so insane trying to organize all this and I only learned this afternoon that I needed to be in NY in 3 days. The emails, phone calls, paper work have been overwhelming. Julia's poor oncologist has been working around the clock to get this organized. She is absolutely wonderful and I thank god everyday we have a doctor as caring and compassionate as her, we could not ask for any better.

Julia has been feeling good these days. She is playing and fighting with Anthony and Emily like she should be. She will be at the hospital tomorrow for clinic, blood work, chest x-ray, and her weekly infusion.

I will update you all when I return from New York.

Thanks
Nadia

Disney Here We Come........

2011-08-22T17:10:00.000-07:00

Hi Everyone,

After discussions with both our doctors and Children's Wish, we have gone ahead and booked Julia's wish to Disney. We are going from September 4-11, which means Julia will celebrate her 6th birthday in Disney. How perfect is that? Our original wish of September 29th didn't look like it was going to work based on us needing to be in NY. So it was pass it up again or go now. Everyone was a little hesitant when I requested to go, but thought that as long as I was comfortable with the PICC line and Julia's condition it would be ok. She will be closely watched between now and than and will have every test possible on September 2nd prior to departure. After years of missing out on so many things there was no way I was going to let my kids miss out on this opportunity. So for those of you who know me well, I am scared silly about going, but hopefully nothing Ativan can't take care of! The kids are so excited which makes all the anxiety worth it, I guess.

I am going into Sick Kids tomorrow (yes me), for my last set of blood tests and will be donating my cells on Monday. Another thing Ativan will come in handy for!!

Julia has been feeling good and all her bloodwork last week was almost perfect. Doctors are very happy with her progress but gearing up for what may be coming. Based on Julia's history (after stopping chemo), she usually starts to show signs of her immune system coming back at the 8 week mark, which means the return of the EBV. Her last chemo was July 8th, so we will wait and watch and hopefully Julia will once again prove everyone wrong. She had an ultrasound Friday and I will review the results with doctors on Friday. Julia's transplant doctor has decided to try and pull her off the steroids in preparation for NY. We have tried this twice and she has had rejection in the past, but NY feels like being off while receiving my cells will better the chance of success. So at this point we need to out way the risks vs. the benefits. We will stop the steroids once we return from our trip and biopsy her just before leaving for NY to make sure she is not rejecting.......makes me nervous but really nothing I can do but trust the doctors.....story of my life.

For now we continue to go back and forth with Sloan Kettering in NY to work out all the details of trial. You would not believe how different and difficult things are in the USA. I am also trying to learn dressing changes on Julia's PICC line, as I will need to do this while in NY.......not going so well. I am nervous and Julia is extremely anxious having me do it. Don't know how this is going to work. Should be interesting.

As always I thank you all for your support and generosity in helping our family get to NY for treatment. I will continue to keep you posted and will definitely post some pictures of Julia in Disney.

Nadia

NYC Ready For Us.............

2011-08-11T11:01:00.000-07:00

Hi Everyone,

A lot of you have been asking on the status of the bloodwork Elio and I did last month with Sloan Kettering. I just got an email from Julia's oncologist today to tell me that they are ready for us. They would like both of us to donate our cells but of course want mine first. Therefore I will do some bloodwork tomorrow at Sick Kids and go into Toronto General next week to do the donation of cells. The collection process involves leukaphoresis - which takes all my blood out through one IV and passes it through a machine to collect only the T cells and then puts it back through another IV. Considering I just about passed out when giving blood last time I am extremely nervous and hope I can do this. Hopefully I will be allowed to pop a few Ativan before the process!! I just keep telling myself its needed to potentially save Julia's life, and keep thinking about all she's had to endure. Sloan Kettering will be ready for Elio once they have received my cells. This means assuming Julia remains well our departure date will be approx. 4 weeks from collection of cells. We will be travelling to NY in the next few weeks to meet with doctors before starting the trial.

Julia was at the hospital Monday for her weekly infusion and bloodwork and will return tomorrow for another infusion and more bloodowork. They tested her EBV counts (which up to know have remained negative due to chemo), and will hopefully get the results tomorrow. As soon as Julia's EBV returns she will need to go to NY, and I have a very bad feeling this weeks results will be positive - I don't know why just a feeling I can't shake. She has been feeling a little under the weather the last few days...........

Again, I thank all of you for your support and will keep everyone posted in the coming weeks.

Nadia

Quick Update

2011-08-02T10:17:00.000-07:00

Hi Everyone,

Julia was at the hospital last week and everything continues to be well. Her immune system is still down and she continues to get weekly infusions to boost it. She remains EBV negative (which means the effects of chemo are still in her system). Doctors expected that it will take approx. 8 weeks to clear the chemo. She is feeling well and enojoying her time at home.

I continue to battle with Sloane Kettering over my invoices. The lastest bill I receieved was for $130,000. Our doctor here is trying to sort it out but its amazing how things run in the US. We are so lucky to have health care in Canada. It's a real eye opener. The focus is on the money not the patient. I hope to have it all resolved in the next week or so.

Elio and I will probably find out next week if either of us were a good match for Julia. If so, we will proceed with donating our cells and ship them to NY. Since Julia has remained well our scheduled departure for NY is September (depending on our cell donation, and Julia's own cell count). It has been recommended that we go to NY and meet with doctors prior to bringing Julia there, so we are trying to sort out when would be best for us to go.

I want to thank everyone who has donated to Julia and/or bought raffle tickets for the raffle Mary is holding. It is very much apprecited and will help greatly with the medical expenses.

For now we continue to live each day not knowing what tomorrow will bring. Every week at the hospital I feel more anxious and more worried about what the future holds. I will continue to keep you all updated on Julia's progress/plans.

Thanks
Nadia

Scan Results

2011-07-16T06:17:00.001-07:00

Hi Everyone,

I am happy to report that Julia's PET/CT on Tuesday was good. There were still a few lymphnodes but they were all within normal size. Our oncologist was pleased and this is what she expected. Based on these results we are stopping chemo and watching and waiting until we are ready for New York. We do not want to over use chemo and reserve it for when we need it. This makes me incredibly nervous but I trust in Julia's doctor, she is terrific. All the staff at Sick Kids have been tremendous. Those poor nurses who have to put up with Julia deserve metals. She sure gives them a hard time but most of them have the patience of a saint. I tell you they probably finish their shift exhausted after having Julia. I don't know why but Julia is not handling the hospital days very well. She fights everything and we spend our days controlling temper tantrums or negotiating vitals. We are so lucky the staff is good to her. I hope New York will be as good....

Elio and I gave our blood on Tuesday and it has been shipped to New York. For now we wait for word from New York on the results. Everything has come together and the staff at Sick Kids have done an excellent job getting everything in order for us. We are basically ready to go when they call for us. We expect that if Julia remains well we won't leave for New York until September.

Julia is home and feeling well. She is playing and almost doing what every 5 year old would be doing. She is however limited with her line, but she doesn't let that bother her. I look at her every day and cry for all shes had to endure. I'm grateful for how strong she has been but I fear the day when she can no longer be strong. It's funny I thought that when we got out of the hospital things would be more normal but I'm realizing that our lives will never be normal. I spend everyday living in fear and wondering what tomorrow will bring.

Yesterday Julia visited with a mother from Sick Kids who lost her daughter and when she came home she asked me some tough questions about where her daughter was. She asked about angels, and how you become an angel, and why did this little girl become an angel so small. Interestingly she said "mom, I don't know what they did to her?". When I asked who? she said the nurses and doctors. You could see she was thinking about it and trying to figure out what happened. Imagine.....talking to your 5 year old about death and angels. I cried so much during our conversation I was lost for words. How could I possibly explain such a cruel, unfair world we live in.

Thanks to everyone for your continued support without it I don't think I could get through this. I know I'm still really bad at returning calls but please bare with me. Things have been really busy and there are good days and bad. I will continue to keep you all posted on Julia's progress.

Nadia

Quick Update

2011-07-09T05:58:00.000-07:00

Hi Everyone,

Julia is home and feeling good. She was at the hospital twice this week for clinic, blood work, and treatment. Home care comes everyday to administer her anti-fungal meds so its quite busy but being home is priceless. Julia received her last scheduled dose of chemo yesterday and will have her PET/CT on Tuesday. The hope is that she is already in complete remission. Based on how well she's turned around clinically her oncologist believes we should see a complete response.

We had our big video conference with Sloane Kettering in NY on Thursday and it went really well. They explained how the trial works and that so far they have seen a 75-80% success rate. The kids they have seen so far have been very sick with progressive disease and did not respond to chemo. Therefore Dr. Prockup (from NY) thought that since Julia is clinically well her chance of success is even greater. Sloane Kettering currently has 3 donors in their bank they could use for Julia. It was discussed that since Julia is stable and presumably in remission we should explore parental donation. Short term it makes no difference but long term it is preferred if Julia had me or Elio as the donor. Therefore we have registered Julia for trial and Elio and I have signed consent for ourselves to participate. We have an appointment Tuesday at the hospital and they will draw the first set of blood required. They will ship it to NY where they will do the first set of testing (this takes 4 weeks), to see if we are a good match. If one of us is then we will undergo plasmapherisis (similar to dialysis) to retrieve our T cells. They will then be shipped to NY and grown in the lab (this takes another 4 weeks), then infused into Julia. Therefore we are scheduled to go to trial in 8 weeks if everything goes as planned. If Elio or I are not a good match after the 1st set of tests we will go for donor cells in 4 weeks. Should Julia's scan only show a partial response than we will go immediately and use donor cells.

It has been recommended that we take our wish now while Julia is well pending the results of the scan. We do not have medical clearance to do the Disney cruise and must stay on land. We will wait for Tuesday's scan and than make some decisions after that.

I will update all of you on the scan results as soon as possible.

Thanks again for everything.

Nadia

Update

2011-06-26T18:58:00.000-07:00

Hi Everyone,

I want to start by telling you all that Julia has improved clinically since starting treatment and she is feeling better. Her tummy is getting smaller, her fevers are finally gone, she's no longer in pain, and her counts are finally recovering. It's amazing that with only 2 weeks of treatment there's been such an improvement.

It's been a long, overwhelming and emotional 10 days. I will try my best to summarize what has happened and where we're going from here but my head is exploding so bare with me.

We had a big meeting with our Oncologist and social worker on Thursday. She told us that the pathology report from her neck lymph node biopsy has confirmed that the PTLD is back and that it is the same type and stage as the 2 previous times (this is good news, its not at a more aggressive stage). Given these pathology findings doctors assume that all the nodes that lite on PET (lungs, axila, groin and her spleen) have disease. Surprisingly the biopsy of her gut and colon did not find any evidence of PTLD. We are all confused and puzzled at this news, but we'll take it.

We have gone world wide in an effort to find options and have had an overwhelming response. Doctors from all over the world have responded with suggestions and ideas. Julia is the first kid at Sick Kids to suffer a 2nd relapse so there is no protocol for treatment, doctors are making one up. Doctors at Sloan Kettering Cancer Center in New York city have accepted Julia into their clinical trial. This is a trial in which they will give Julia donor T cell infusions in hopes that those T cells can fight the EBV and prevent the PTLD from coming back. The good thing is they will take her once she is in remission and use this experimental treatment as a preventative measure as oppose to using this as a treatment measure. The trial is 9-12 weeks with 3 weeks on treatment and 3 weeks off. The approx. cost we were told is $80,000 (assuming she is not sick and needing hospital admissions). At this point our doctors are recommending we go. They have no idea if this treatment will work but our doctors exact words to me were "if we don't try this, I think we will all look back and regret it". They are however recommending we go for 3 weeks of treatment and come back on the 3 weeks off. This will keep costs down and allow us to keep our Sick Kids team as our primary team and arrange tests and scans to be done here and shipped to New York. If we go for the full time we will lose our doctors here and have to find new doctors in New York. We have told our doctors to go ahead. We will go wherever they think is best for Julia. The next step is a video conference with New York this week or next. Then we will fly there for a consultation with the doctors running the trial. After that if everyone is happy we will be ready to go. They estimate that Julia will be ready to go to New York in 3-4 weeks. Because we have chosen to go to New York for trial we can not give intense chemotherapy so our doctor has decided to keep her on only this one drug we started and hopes she will be in remission after 4 weeks of treatment (that's 2 weeks away). If she is only in partial remission she will continue with another 4 weeks of treatments and than go to trial. If she doesn't respond by then doctors will be forced to give harder chemo. When going to trial the patient needs to go as healthy and strong as possible hence most trials will not take kids that have had too much toxicity from chemo so close to entering a trial. Our oncologist really believes that Julia will respond and achieve full remission with the 4 weeks of treatments. The problem is that this will most likely not be enough to keep her in remission for very long, so time is of the essence. This trial treatment is like flipping a coin. It's worked on some patients but not on others. Should the treatment in New York not work our doctors here do have back up plans. One being the 2 year chemo maintenance protocol that Leukemia patients follow after initial treatment. Another being continuing the drug she is currently getting maybe once every 3 months. These are all ideas that are being discussed and the scary part is no one knows which one to try or if they will work. We do not have the statistics in our favor right now. The only thing we have is hope, faith, prayers, and positivity. We need to remain optimistic and positive and take this one day at a time. Julia is an incredibly strong little girl and if anyone can do this its her.

There are a lot of things that need to be done and taken care of in the next few weeks and doctors are trying really hard to get Julia out of hospital this week so she can spend some time at home with her whole family before leaving. Our goal is to get her eating and drinking so we can have her home by mid week. She will return as an outpatient for the next 2 weeks of treatment. Our meeting talked a lot about quality of life and the teams here work hard to give that to all these children. It's important to all of us to have her be home and enjoy everyday life out of the hospital setting before leaving. Julia has no idea whats going on she just keeps saying shes going to New York City!

I would love to talk to each and every one of you but that just isn't possible. There's a lot to do and tons of stuff to sort out and most importantly I need to spend this time with my kids...all my kids together. I am emotional, frustrated, sad, angry, but most of all terrified. I am having a hard time keeping it together right now, and I really need to get it together and be strong for Julia.

Once again I thank all of you for your ongoing support and ask that you keep Julia in your prayers always.

Sincerely,
Nadia

Here We Go Again.................

2011-06-17T10:43:00.001-07:00

Dear Family and Friends,

As most of you have already heard it is with great sadness that I inform you that Julia has relapsed again. This past week has been very intense and Julia has deteriorated very quickly. She continues to have high grade fevers, diarrhea, and her spleen is so big that her tummy is as big as Elio's! We have had to start giving her morphine for the pain.

On Tuesday she went to the OR to get her PICC line put in and all hell broke lose. When they extubated her (took the breathing tube out), she became very unstable. Her oxygen levels were extremely low and her respiration rates were 80 (20 - 30 are normal). It was complete chaos as doctors tried to stabilize her. There were 3 doctors, 5 nurses, the anesthesiologist, and the ICU team all in our 10x10 room. I have never felt so helpless and scared. She has improved but is still requiring a little bit of oxygen to help her. On Wednesday she had her PET/CT scan and by 5:00 our doctor was at our door with the terrible news. She sat down beside me and told me that the scan was very concerning and it looked like we were dealing with a relapse. The PET lite up in the neck, lungs, gut, and axillary. It also showed that there may be an infection going on in her lungs and this could be the reason for Tuesday's episode. We have increased the strength of her antibiotics in hope of getting rid of the infection. This morning Julia went into the OR for a gut biopsy, a colonoscopy, and to remove the lymphnodes in her neck. The procedure was about 3 hours and no matter how many times I wait in the waiting room it never gets easier. The procedures went well and she has remained stable. The doctors came to talk to us and informed us that the PTLD was seen in the colon. The gut and neck will have to wait for pathology reports. Since pathology can take up to 2 weeks and we don't have time to wait (because the disease has come on so quickly and aggressively), our doctor has decided to start some treatment as we wait for pathology results.

As this cancer is rare (only effecting transplant kids) the treatment options are limited and we don't have a defined protocol. At this point doctors are not sure what they will use to treat her. We are starting 1 chemo drug today (as I write this post),to stop progression of the cancer until pathology is back and they know exactly the degree of disease they are dealing with. This also allows doctors to consult other oncologists for suggestions. They have already contacted the UK and the US for advice and we are awaiting responses from both.

Our Oncologist just came to see us today to talk about what she's thinking right now. Her immediate goal is to get Julia in remission (which she doesn't see a problem with), the problem we face is the disease coming back. She has found a clinical trial in New York that Julia may qualify for so she is submitting a request today. She is still waiting to hear back from the UK and has contacted the European Oncology Board for suggestions. Whatever we decide it will require a maintenance or prophylaxis part once treatment is done. We may use the maintenance protocol that Leukemia patients use which is a 2 year protocol. Right now everything is still being worked out.

As I already knew the "talk" was coming I informed our doctor upfront that we need to go for cure and will not agree to palliative care. The complexity of what's going on is impossible for you all to understand and I do my best to keep you all informed without bombarding you with the medical terminology. I will say that we are in a very bad position and are fighting for life. The prognosis is poor and we need to do anything and everything we can to find options. Therefore I ask all of you to get the word out in hopes that somebody may know someone that can help. We are exploring all options and the more information and resources we have the better off we will be.

I want to express my gratitude to all of you for the overwhelming support, prayers, words of encouragement, food, etc. we have received. As you can imagine things are very busy here and we are in a touch and go position right now and until Julia is more stable I can not talk right now. I am an emotional mess and extremely distressed. Please know that it doesn't mean I don't appreciate all the messages but I can't possible reply (it would take me all day). When things are more stable I will be in contact.

For now, please please pray for my baby girl who is fighting for her life.

Sincerely,
Nadia

Quick Update

2011-06-09T13:35:00.000-07:00

Hi Everyone,

It's been a really crazy week and I'm not really up for talking much about it. I know many of you are wondering what's going on so I will try and give you a brief update.

It is now day 12 of fevers and doctors still have no idea what the source of the fever is. We are on iv antibiotics and started anti-fungal meds, and still fevers. Infectious Disease is now involved trying to find the source. Some of the bone marrow results came in yesterday. It's showing that Julia's marrow is producing the cells but they are being destroyed in the peripheral blood. The million dollar questions is WHY? The next step is a PET/CT early next week to look for evidence of relapse, and than a gut biopsy after that. Julia's counts continue to be bottomed out and despite getting a blood transfusion last week we will likely need another transfusion tomorrow.

As the days go on its obvious everyone is thinking more and more about possible relapse. It's a sad and quite tone all around from everyone in here. This situation is all too familiar and I'm experiencing major deja vu. I refuse to give up and continue to be optimistic that this is all related to infection. And I will continue to believe that until told differently. Obviously I am an emotional wreck right now so I will be in contact when I pull myself together. I really do appreciate all the support and concern.

Sorry for the brief update and thanks for understanding. Please say a prayer for Julia as once again she is faced with challenges.

Sincerely,
Nadia

In Hospital Again.............

2011-06-02T09:32:00.000-07:00

Hi Everyone,

I apologize for not updating you all sooner. I will start by letting you all know that Julia did get home the day of Anthony's communion. Although after only 2 days home she developed fevers again and was diagnosed with a really bad ear infection. She started high dose antibiotics for 10 days. During those 10 days she felt great. She finished her antibiotics on Friday and by Sunday the fevers returned. She was once again admitted to Sick Kids on Monday for fever neutropenia. She has 0 counts, and the medical staff is stomped. She has been really sick and out of it this admission and she is getting a blood transfusion as I write this post. We hope she perks up a little after her blood transfusion. Unlike other admissions all of Julia's blood counts are down, not only her neutrophils, but hemoglobin and platelets as well. This has me extremely worried. She is booked for a Bone Marrow Biopsy on Monday morning. Since this is now 5 days of fever they will begin a fungal workup which consists of CT scans. Julia's oncologist has been away so things are a little up in the air. The team on the ward isn't saying much (that's never a good sign). She is back tomorrow so I hope to have some clearer answers and a more concrete plan as to where we go from here.

I will keep you all posted when i can. Please like always keep Julia in your prayers.

Thanks
Nadia

Another Admission

2011-05-12T07:47:00.000-07:00

Hi Everyone,

I regret to inform you that Julia was admitted to hospital Monday with fever neutropenia(low counts), enlarged spleen and lymph nodes and lethargy. In rounds yesterday I was basically told that they suspect the disease could be back and we are proceeding with a work up. Later that day our oncologist came to see us and put the breaks on. She has taken us off the experimental drug and moved the Bone Marrow aspirate and PET scan to end of next week. She is not convinced it's disease. Since the experimental drug suppresses the bone marrow she wants her off of it for at least 1 week before doing the bone marrow aspirate. We will be going ahead with an ultrasound today. Julia's x-ray and echo showed some suspicious findings that there is a pulmonary inflammation going on. Last night it was confirmed that Julia has tested positive for Para Flu. This would explain the fevers, and findings on x-ray and echo, but not the other findings. This can be extremely dangerous in immunocompromised kids and can lead to a serious pneumonia. For now she is being well supported and in the right place. Unfortunately this means she will not get out of here for Anthony's communion on Saturday. We have discussed with doctors that IF she's clinically well they will get her out on a pass for a few hours so she can attend the communion. This could not have happened at a worse time but not surprised given our luck.

Yesterday was an extremely emotional day and not in the mood to go into much more detail right now. I will keep you all posted when I know more (which probably won't be till end of next week). Please keep Julia in your prayers.

thanks
nadia

Happy Transplant Anniversary

2011-05-05T05:59:00.000-07:00

Hi Everyone,

It's hard to believe that 5 years ago today Julia underwent heart transplant. May 5th, 2006 @ 6:00am - this was the day our lives changed forever. It's been a long and challenging 5 years but when I look at Julia today I can't believe that 5 years ago doctors didn't think she would survive. And now after all the challenges she is a beautiful strong 5 year old girl, feistier than ever.

Julia had her CT last week and the results were unchanged from the previous scan. Good news, could have been better. Julia continues to have some unexplained enlarged lymph nodes in her chest but they are not growing. Given all the bumps recently this was a good scan given the alternative. We will continue to monitor with another CT in 3 months unless clinically needed sooner.

She was at the hospital on Friday and her counts continue to be very low. Doctors think it's because of the experimental drug she is on. It came down to controlling the EBV or saving her counts and avoiding neutropenia and blood transfusions. Her doctor decided to reduce the drug to once a day instead of twice hoping to see improvements in her counts. She did not have the results of her EBV numbers when making her decision but assumed her EBV would be down. On Monday we repeated her counts and they are slowly improving. Yesterday I received an email from Julia's oncologist that her EBV numbers from last week are up. The decision was made to stay on the experimental drug once daily and repeat the EBV next week. As you can imagine it is a fine line between controlling the EBV and keeping her counts up to avoid serious infection. Always a battle nothing ever comes easy with this kid!

Overall she is feeling better and is back at school which she is so happy about. Anthony's communion is next week and fingers crossed that Julia will remain healthy for it. We have confirmed Julia's wish for September 29th. We will be doing a 4 night Disney cruise and 3 nights on land. The kids are so excited they can hardly wait. It's going to be a long 5 months waiting.

Thanks again for all your support and I will keep you posted on Julia and also post some pictures from Anthony's communion. This will be the first family function that we all attend in a very long time.

Sending everyone a very Happy Mother's Day. We are so glad to be home for this day considering 3 of the last 5 Mother's Day's were spent at Sick Kids.

Nadia

Home Sweet Home

2011-04-12T15:02:00.000-07:00

Hi Everyone,

Just wanted to let everyone know that Julia is now home. She tested positive for Influenza A and it really wiped her out. Many people were surprised that I was thrilled when the swab was positive for Influenza but in the Oncology world every positive culture you get or every source you find for illness stops all the thoughts of disease relapse. Although she has not recovered totally she is feeling much better. She is still more tired than usual and has lost over 2kg in the last couple weeks. She was at the hospital today for clinic and bloodwork and the results were better. She is slowly having count recovery and all her electrolytes are back in normal range.
While Julia was admitted she was taken off the experimental drug and unfortunately her EBV numbers sky rocketed. She is now back on the drug and hopefully we will see the numbers come down. She is scheduled for her CT scan on April 27th and we are all crossing our fingers for good results. For now we continue to monitor the EBV very closely.

I want to thank everyone for your support while we were in hospital and calming me down as I was in pure panic mode. I will keep you all posted on the results of her scan.

Thanks
Nadia

Spoke to soon..............

2011-03-29T18:17:00.000-07:00

Hours after updating you all on Sunday Julia was admitted to Sick Kids for high fevers and letheragy. Her bloodwork showed that she is once again neutropenic. Her counts have taken a dive. She was cultured for infection and put on antibiotics until we know what is going on. She is feeling really sick and can't break the fevers. I was really freaking out yesterday............deja vu. Looking at her laying in her hospital bed unresponsive, it was to much to bare.

Please keep her in your prayers and I will keep you all posted.

Thanks
Nadia

Update

2011-03-27T06:16:00.000-07:00

Hi Everyone,

Just wanted to let everyone know how Julia's month has been. She started the month feeling unwell and doctors weren't quite sure what was going on. Like always we went through all the standard tests and found out that Julia had strep throat. Great news!!! A lot of people found it strange that I was happy about this but you have to understand that when Julia is unwell with fevers and we can not find a source it has doctors pointing to the cancer. So the fact that we had a source (strep throat), was a relief for us. She was treated with antibiotics and was feeling much better. Unfortunately she's passed it to Emily and in the last few days Julia is again not feeling that well. Which could mean she has caught it back again from Emily. We will have to ride it out and see what happens over the next few days.

Julia was at Oncology clinic on Friday and the doctor was happy with everything. Her counts are starting to drop probably related to the new drug but she is not neutropenic which is great. We will have to watch counts closely while she is on this new drug. Her last EBV counts had dropped slightly since being on the new drug and we repeated them on Friday. Hopefully we will see another decline. She is scheduled for a CT scan on April 27th which has me a little nervous. For now we are continuing to monitor things closely with bloodwork and clinic appointments.

I will keep you all posted on how she does the next month.

Thanks again for all your support.

Nadia

Quick Update

2011-02-28T06:29:00.000-08:00

Hi Everyone,

Julia had her kidney tests done and they were significantly reduced from last year. Which means her kidneys are really taking a hit from the meds. Given these results we decided to hold off on the experimental drug and wait to see if her EBV numbers continue to increase. Julia was scheduled for her heart biopsy last Tuesday and on Monday she developed fevers and was feeling unwell. We did not think they would go ahead with her biopsy but proceeded to the hospital Tuesday morning. After many discussion back and forth with doctors it was determined that the importance of the biopsy outweighed the risks. Given that we had reduced the steroid 5 weeks ago this biopsy was a must. Therefore they took her into the OR with the fevers. We were extremely nervous but like always Julia did very well. Because it was unclear why she was having fevers doctors started her on a high dose of Penicillin to cover her just in case something was growing. On Wednesday I got the call that biopsy results were good, there was very minimal rejection (which is expected). Boy were we all relieved. We were at the hospital Thursday for clinic and since Julia has been a little off and experiencing diarrhea, stool samples were collected. On Friday afternoon I got a call that her samples tested positive for Torovirus (a stomach bug). If that wasn't enough Friday night I got an email from Oncology that Julia's EBV numbers have tripled in the last 2 weeks (not good). We will repeat the numbers this week and are starting the experimental drug immediately.

It's been a stressful month but I have to remain optimistic that Julia will continue to fight and be strong and that all will work out fine or I will really lose my mind.....which is already happening....haha.

Thanks again for all your support and concern and I will keep you all posted on how she's doing.

Nadia

Update

2011-01-29T09:47:00.000-08:00

Hi Everyone,

I apologize for the delay in updating you all but it's been a crazy few weeks. Julia's surgery went very well according to doctors. It's amazing that after all I've seen and all the procedures Julia's been through this one hit me hard. I brought Julia into the OR (I don't normally - that's Elio's job) because she insisted I bring her. I had a major meltdown in the OR. I have never in 5 years cried so much that the whole OR was worried about me. They kept asking me "mom are you ok? get her some water?". I felt like saying who cares about me just take good care of my daughter. I held Julia tight as we walked in the OR and she begged me over and over "no mommy don't let them do this to me, please mommy, please mommy". Broke my heart, I could not compose myself. She gave them quite the fight, it took three of them and me to hold her down as they tried to mask her and get her to sleep, and even after getting the mask on she fought with everything she had. She held my shirt so tight and they couldn't believe she wasn't knocked out yet from the meds......that's my fighter. The wait..it was the longest 3 hours ever as I sat in the waiting room unable to control my emotions. Everyone around me must of thought this was my first time there. Finally after about 3.5 hours the doctor came out and pulled us into a private room. The surgeon said that Julia did very well and he was extremely happy with the way the procedure went. Unfortunately due to the size of the chin bone he had to remove he had to put her in a full leg cast (from butt to toes). Needless to say when Julia woke up and saw the cast she freaked. She was in a lot of pain and they did a good job keeping her druged up on morphine. The pain lasted about a week and then like the fighter she is, she totally recovered. She started moving around, determined to walk even with this huge cast. She was at the hospital on Tuesday and they switched her full leg cast to a half cast (for another 4weeks),and she was able to go back to school which made her so happy.

On a sad note Julia's EBV numbers (potential markers that the cancer is or could come back), are on the rise. We met with doctors Tuesday and given that Julia relapsed already once when her EBV titres started going up we have decided to start an experimental drug to try and control these numbers from climbing. The drug is considered "cytotoxic" - like chemo), and of course has potential harmful side effects. We were suppose to start immediately but Julia's blood work on Tuesday was really bad. We repeated the blood work on Thursday and although a little better still not good. Given these results she has been booked for a GFR (a kidney test), on Tuesday to see what's going on and because this new med is extremely hard on the kidneys we have postponed starting until doctors see the results of the GFR. Given that her EBV is on the rise we have started weaning the steroid to hopefully help with the rising titres. We have cut the dose in half and Julia will have a heart biopsy on Feb 22 to make sure there is no rejection.

I'm not really sure why but the last few weeks have been extremely hard. I'm physically and emotionally tired, worried, frustrated, and most of all so sick of being at the hospital. It feels like after 5 years of fighting I am quickly losing strength. I am emotional and can't stop thinking about what we've gone through and even more scary what will happen next? Will we ever be free of the hospital or constant worry? We continue to be at the hospital 1-2 times a week and quite honestly it's really getting to me. Julia's doctors asked me on Thursday if I was ok, my response "did I tell you how much I hate it here". After I said it I couldn't believe it. There are many families fighting tougher battles right now and losing so I try to remain grateful for where were at.

This upcoming week is one of many tests and results on Julia's latest EBV numbers. I am a nervous wreck waiting for the numbers. I will let you know how this week's tests go.

I want to thank you all for your continued support and let you all know that without your support, encouraging words, and prayers we really couldn't have gotten through this. I do want to apologize for my distance. I realize that I have not been very good at responded to messages and I apologize but these days I don't have much to say and feeling a little down. Just need some time to re group. I'll be in touch soon.

Thanks
Nadia

Update

2011-01-08T09:28:00.000-08:00

Dear Family and Friends,

I hope you all had a wonderful Christmas and New Year.

We all had a relaxing and uneventful holiday. Julia has remained well and she enjoyed her 3 week break from the hospital. She was at the hospital yesterday for clinic and bloodwork, and everything was great. After more than 3 weeks without clinic or bloodwork I was a little nervous to get the results, but all her bloodwork was perfect. Looks like 2011 has started on a good note. The only stressful news is that Julia will be having her knee surgery on Tuesday.....YES this Tuesday. I just found out yesterday and was completely shocked it is so soon. We met with doctors yesterday to discuss the surgery and more importantly pain management. Apparently the surgery and recovery is extremely painful. She will require major pain relief including morphine and a IV line in her leg to deliver constant narcotics to the surgery sight. She will be admitted Tuesday morning and the surgery will be at 8:00am. She will be in the OR for a minimum of 3 hours, than go to recovery and then be transferred to the ward. She is required to stay in hospital for awhile. The total recovery period is 6 weeks. I am extremely scared, nervous and worried. After the million procedures she's had I don't know why this one has me so scared. I think the length of time in the OR combined with the pain she will experience is putting me over the edge. I feel so bad for her, that she has to go through this. Like she hasn't had to deal with enough. Now that she feels well we are faced with another set back. She has no idea what is going to happen on Tuesday and Elio and I are struggling trying to decide how to deal with this. Do we prepare her or not? For those of you who know Julia telling her may make things worse, but not telling her makes me feel horrible. How do you explain to a 5 year old that she is about to experience one of the most painful surgeries and will not be mobile after it? Just writing about this is making me sick.

Once again I ask you all to say a prayer for Julia. We hope and pray for a smooth surgery and a speedy recovery. I will keep you all updated on how she is doing.

Thanks for your continued support.
Nadia

Home Sweet Home

2010-12-07T05:57:00.001-08:00

Hi Everyone,

Wanted to let you all know that Julia is home from hospital and has finished her course of antibiotics. She got through the infection with no complications (thank God). She is feeling better and pretty much back to herself. She is glad to be home and back to somewhat normal life. As the year comes to an end I pray and hope that we can put everything that happen this year behind us and have a healthy 2011.

Julia is scheduled to have her repeat CT scan on January 17th. I will keep you all updated on Julia's progress.

Wishing you all a very Merry Christmas and Happy New Year.

Nadia

Back In Hospital

2010-11-26T19:32:00.000-08:00

Hi Everyone,

Just wanted to let everyone know that Julia was admitted to hospital on Wednesday morning. She had been feeling unwell for 4-5 days with low grade fevers at night. After multiple e-mails back and forth with doctors they asked me to bring her in on Tuesday to clinic for some blood work. They examined her and could not find a source for the fever and all the standard blood work was ok. They decided to draw cultures because it had been 4 days of fever. On Wednesday morning I got a call from Julia's oncologist that Julia's cultures were positive for a bacterial infection in her blood and I needed to get her to hospital ASAP for IV antibiotics. I immediately dropped Emily off at my mom's and headed to the hospital. When I arrived they started an IV and began broad spectrum antibiotics. At this point they did not yet know what type of infection it was. Yesterday it was confirmed that the infection in her blood is strep pneumonia (one of the worst and most dangerous ones to have). The weird thing is that besides the low grade fevers she was showing no other symptoms and doctors would expect that anyone with this infection would have been really really sick??? She was sent for chest x-ray and echo to make sure the infection was not in her lungs or heart.
The treatment for an infection of this magnitude is 10-14 days in patient IV treatment. When I heard that I almost died. I have no idea how I spent 6 months in here because 14 days feels like a lifetime. Further tests showed that the bacteria is sensitive to Penicillin and since this is available orally I have negotiated with the doctors (or more like begged them)to let us do some of the treatment at home orally. As it stands they are considering the possibility of letting her go home Monday or Tuesday and finishing treatment orally IF Julia remains well and all her blood work is ok. I will not hold my breath and believe it when I'm on my way out of here.

At the same time both Anthony and Emily are really sick and once again I am not able to be there for them. Being back here is horrible. The small stuffy rooms, the lack of privacy, the stupid machines beeping all night, the constant nurses in and out of the room all night long, it all sucks. I am climbing the walls in here and it really brings back way to many bad memories. I need to get out of here.

I will keep you all posted on how Julia is doing and when we get out of here.

Thanks
Nadia

So Sorry

2010-11-03T09:26:00.000-07:00

Hi Everyone,

I want to start by apologizing for the long delay in updating Julia's site. It has been a very busy few months. Things have been very up and down and we have been very busy trying to get Julia back on track. We have had numerous follow ups and are trying to get her stable on her immunosuppression drugs. Quite frankly I now believe in post traumatic stress. I think I am feeling more now then when we were in the hospital. There are days I can't believe what happened. There are days I realize how close we came to losing her. There are days I realize how much time I missed with Anthony and Emily. There are days I just want to forget everything and not think or talk about it.

We are really feeling the impact with Anthony. He is so emotional, angry, confused, and insecure. It has been very challenging trying to take care of Julia and also trying to sort things out with Anthony. Unfortunately Anthony is still having to take a back seat while Julia continues to be front and center. Anthony has been effected more than we ever realized.

Overall, Julia is doing very well. She feels good and is now back at school. She is loving school and enjoying being able to do normal things. She has had weekly visits to the hospital but doesn't seem to mind since she knows she gets to come home. Her scan which she had in early October was unchanged from the one in July. At this point doctors were ok with that and decided to remove her line and keep a close watch. She will have a follow up scan in January to make sure things are ok. She continues to get monthly antibody infusions to help prevent relapse. For now we wait, watch, and pray.

Our real battle has been from a heart transplant side of things. We are having challenges getting Julia at the right level with her medications. She continues to be on steroids until we can be sure it is safe to take her off. At this point we do not have a good plan and are working with doctors to determine what is the safest thing for Julia. We need to protect her heart but at the same time we are trying to avoid causing a relapse by keeping her over immunosuppressed. The steroids are not the ideal thing to be on with regards to the PTLD. We have had multiple plans but they keep changing weekly. Our latest plan is to keep her on the steroids until January and then start weaning her and biopsy her in February.

Julia started having severe leg pain about a month ago and was unable to walk. The immediate fear was a tumor but after testing that seems to be unlikely. Her x-ray did show some damage in her left knee and a growth discrepancy between legs. She had an MRI last night and we are awaiting results. It was a 90 minute MRI and she was so brave until they had to poke her for an IV and then she freaked out. It is so hard to see her so scared and fed up with all the poking and prodding. As a parent it is so hard to see your child suffer and not be able to help. I can't make them stop because she needs to have these tests done in order to make sure she's ok. Last night I really just wanted to pick her up and tell everyone to leave her alone. Once we got home she was fine and had already forgotten about the pain. Thank god she is so tough and can easily brush things off.

Like I said earlier I really apologize for not updating sooner but emotionally I am feeling so overwhelmed right now. I am consumed with Julia's care and so scared of missing something that all I do every night is go through all her test results. I feel like I am second guessing myself some days and I don't know if I am coming or going. At this point maybe I need to go on meds!!!!

I promise to keep you all updated sooner.

I want to thank all of you for your on going support it really means a lot.

Nadia

Quick Update

2010-07-13T20:29:00.000-07:00

Hi Everyone,

I must tell you that this has been an extremely hard few days and I am having a hard time right now. I did however want to let everyone know about the test results as many of you have been asking. Julia's scan on Friday was ok (only ok). There was no immediate concern but there were things that will require follow up. Mainly the scan showed some enlarged lymph nodes in her chest (bigger than previous scans). At this point we will do another PET/CT in approx. 8 weeks. After receiving that news on Friday, today at 12:30 I got a call from the heart transplant nurse informing me that Julia has rejection on her biopsy. This was a total surprise and no one (not even doctors) expected this. I had to get to the hospital by 2:00 so Julia could receive IV steroids for the rejection. She will receive them for 3 days. She is being admitted tomorrow for a scope on Thursday due to the persistent tummy issues she is having. I really have no idea what the plan is right now and will get more answers this week and next. I can hardly believe this is happening. We just can't catch a break. I apologize for the brief update but I am in no mood to go into details as I haven't even absorbed the results myself. I will however let you all know when I receive more information.

Thank you and keep Julia in your prayers.

Nadia

Quick Update

2010-06-28T18:28:00.000-07:00

Hi Everyone,

Julia has been home now for 3 weeks and is doing very well. She is still on overnight hydration but we will attempt to take her off very soon. She is going to clinic on Friday and will have her biopsy and scans next Friday. Depending on the scans and how comfortable doctors are I will try and negotiate taking out her PICC line so she can enjoy the summer. We would also like to plan her wish trip ASAP.

Julia went to school today, her first day in 6 months. She was so happy and excited that she got up at 5:00am and asked me if it was time to go to school. Today at St. Julia's was an award assembly and the school presented Julia with an award for courage and bravery. She was so cute as she walked to the front of the gym to accept her award. She gave her teacher a big hug and then came over to me and gave me a big huge. When we asked her tonight what she got the award for she said "because I am brave mommy". She also said "did you hear all those people cheering for me mom, it was so loud". Adorable. On a sad note she asked me if she would be able to go to school next year for the whole year or if she was going to get sick again. I was lost for words. How do you explain to a 4 year old what all this means. I hope and pray that she will be able to attend the whole school year next year.

Thank you for your on going support and I will keep you all posted on next weeks results.

Thanks
Nadia

Quick Update

2010-06-16T18:32:00.000-07:00

Hi Everyone,

Julia has been home for a week now and she is doing well. She goes to clinic twice a week for now which means we spent more time last week at the hospital than home. Her counts were bottomed out and she needed to get a platelet transfusion last week. Because her blood work was a little off a condition of staying home was to go on overnight hydration for 12 hours. Her home care nurse comes every night to hook her up to the hydration and every morning to disconnect her. The good thing is she was able to get her a portable pump so she is able to be mobile while receiving the hydration. I feel really bad for her as she is a little confused as to why she has to be hooked up at home. Hopefully she will begin to eat better, gain some weight, and be able to hold her own levels so the hydration won't have to stay on too long.

She will be back at the hospital on Friday for Oncology clinic and we will meet with the heart transplant team next Thursday. Now that her chemo is finished she must have some cardiac testing done (yes more invasive testing). Her heart biopsy and CT scan have been confirmed for July 9th. This will be the day that will tell all. If she is in complete remission and whether or not she has any rejection going on. It feels like we just get over one thing only to wait anxiously for the next.

Normally the PICC line would come out 3 months after treatment ended but because Julia relapsed 4 months after treatment and 1 month after pulling the old line doctors have already told us that they will be in no rush this time to remove the line. This puts a damper on my plans to get her on her wish ASAP. As I've learned (the hard way) this year you never know what tomorrow will bring. I was hoping to get her on her wish while she is feeling her best. We will wait and see what the tests show on July 9th, and then I may have to negotiate with the docs.

The last week has been really busy trying to catch up on the last 4.5 months and adjusting to being home again. The kids are also adjusting to being all together again. Especially Julia who is use to having my undivided attention the last 4.5 months. Anthony and Emily want all my attention (and rightfully so), but Julia will not have it. It's a real juggling act, and a fine line between playing favorites. I guess it will just take some getting use to for all of us.

I thank you all for your messages and e-mails welcoming us home. I look forward to being able to spend time with all of you very soon. I will keep you all posted on how Julia is feeling.

Thanks
Nadia

Home Sweet Home

2010-06-07T18:46:00.000-07:00

Hi Everyone,

I am happy to report that after a very long 4.5 months at Sick Kids Julia was finally discharged today and I am writing to you all from home. This did not happen without a little drama first. The plan was to be discharged today if all was well with her blood work. We discussed the plan this morning in rounds and it seemed everyone agreed with the discharge, although we did not have Julia's blood work back at this time. I left the floor to get a coffee and as I was returning to the unit all the docs and nurses were starring at me with this very sad look on their faces. I knew.....the blood work wasn't good. The doctor told me that Julia's blood work was a little off and she needed to get some hydration for a few hours and then repeat it. By this time it was already 2:00 in the afternoon. The repeat blood work came back and although it had improved slightly it wasn't great. Thank god we have had the same fellow (Dr. Kevin as Julia calls him), for the last 4.5 months and he so wanted to see us go. We all starred at each other wondering what we should do...stay or go. The suggestion was to stay and watch how she does but Dr. Kevin could see the disappointment in my face and looked at me and said "I want you guys to go home". We both smiled as he rushed to print and sign our discharge papers. It was a very emotional goodbye. All the nurses said bye and gave us hugs and were really happy to see us go but at the same time really sad. Since we have spent so much time there we really had developed quite a bond with many people and truthfully I saw more of these nurses and doctors then the rest of my family. The one condition of our discharge is that we return to clinic on Wednesday to check Julia's blood work.

Julia completed her last and final round of chemo last week. She was vomiting the first few days and then developed high fevers on day 3. The fevers lasted the full 5 days of chemo and then she turned around. Considering how sick she felt she really turned the corner quite quickly (thank god). Her counts have totally bottomed out and normally you would wait for count recovery before coming home but because we've been there so long and Julia has been clinically well the decision (with a little begging) was made to let her go home and count recover. We will need to return 2x a week to clinic until count recovery (probably the end of June). The only problem is that since her counts are bottomed out if she develops a fever or feels unwell she will have to be re admitted.

Now we sit, wait, and watch. Julia will have a PET/CT scan along with a heart biopsy on July 9th. The scan will confirm if she is in complete remission and the biopsy is to check that her heart is fine after chemo. Going forward our next challenge will be balancing the immunosuppression to make sure her heart is fine and at the same time we are not over suppressing her allowing the cancer to come back. This will be a very challenging balance since Julia has proven to be a child who suffers from rejection. Since this was a relapse for Julia doctors will be watching her very closely.

This has been an incredibly hard year. I have missed so much of Anthony and Emily's life that I will never be able to get back. In the hospital I lived each day battling new challenges Julia faced and really fighting for her life. Now that I am home I live in fear that the disease will return. I hope that in time I will be able to relax and resume somewhat of a normal life. For now I spend my time worrying and wondering what will happen next. For those of you who know Julia she is an incredibly strong little girl with such determination and will to survive. I pray everyday that this is the end of hard times for her and our family, and hope that life from here on will become easier (we really need to catch a break).

I know I have thanked you all before but I really can't express how much all your support has meant to us this last year. Without all your thoughts, prayers, and support we would not have been able to do this alone. It's because of good family and friends like you that we were able to survive. Thank you, Thank you, Thank you.

I will keep you all posted on how Julia is doing, and I promise that once things settle down I will return calls and e-mails. Please continue to pray for Julia that she remains strong, brave, and cancer free.

Sincerely,

Nadia

FUNDRAISER with Passion Imports

2010-06-03T07:23:00.001-07:00

Please click on the image and participate in an amazing opportunity to raise funds for Julia and her family.

Your support goes a long way and we thank you in advance.

Update on Julia

2010-05-26T15:30:00.000-07:00

Dear friends and family,

I apologize for not updating you all sooner but it has been a crazy couple weeks. As some of you know on May 13th (my dad's birthday and the day Julia was diagnosed last year), Julia got to go home. The plan was to stay home until Monday and attend her healing mass, but of course that didn't happen. After only 18 hours at home Julia developed a fever and had to return to the hospital and was started on antibiotics. The strange thing was that her counts (which were almost recovered), had bottomed out again. We have spent the last 10 days waiting and waiting for count recovery. She will begin chemo tonight despite not being fully recovered and she will undergo a bone marrow biopsy tomorrow to see if we can figure out why her counts bottomed out after recovering.

On Friday was PTLD rounds, this is where all the teams; oncology, bone marrow transplant, heart transplant, and infectious disease meet to discuss each case. Julia's oncologist came to see me late Friday afternoon to advise me that in rounds the teams decided they would like our family (me, Elio, Anthony, and Emily) to get tested to see if we are a bone marrow match for Julia. Therefore on Monday the four of us will meet with the BMT team and get tested. As you can imagine this came as a complete shock since we have never discussed this in the past. The idea is that if we get into trouble in the future (another relapse) the bone marrow team will already have our information and know if any one of us is a match for Julia. Although bone marrow transplant is not the plan for us right know (and hopefully ever), it's scary just thinking about it.

Julia has just begun chemo as I write this post, I hope and pray she will stay well and we can get out of here soon. If all goes well we could be home in a few weeks.

Although I was not able to attend the healing mass I heard from multiple people that is was wonderful. People could not say enough about how beautiful it was. I want to thank St Julia's school, in particular Mrs. Lowrie, Mr. Beaudry, and Mr. Grant for all their hard work. I would also like to thank St. Patrick's church for performing a terrific service. I would also like to thank all of you who attended, it means so much to see all the support from friends, family, and even strangers. Wish we were there.

I will keep you all posted on Julia's progress this week.

Thanks again for all the support.

Nadia

Update on Julia

2010-05-12T05:58:00.000-07:00

Hi Everyone,

Julia's fevers are gone and she is feeling much better this week. Her counts have bottomed out and are not yet recovering. She has required frequent platelet and blood transfusions the last week. Once she has count recovery she will begin her
5th and final cycle of chemo. The expected start day will be May 27th or whenever counts have fully recovered. Hopefully she will count recover a little early so she can begin chemo. The 5th cycle is identical to the 4th, so we expect that she will have fevers and feel unwell for the first week. If all goes well after the 5th cycle we will finally be ready to go home. She will have a heart biopsy and PET/CT scan 4-6weeks after finishing chemo.

Now that we are nearing the end of treatment I am getting very nervous about what will happen after treatment. Doctor's have looked into a trial in Texas which will hopefully help prevent Julia's EBV levels from rising which will help prevent the PTLD from returning. The EBV virus is found in our B cells and our T cells are what help control the B cells from proliferating and causing the cancer. Because Julia is on immunosuppression for her heart her T cells are very weak and unable to control the B cells properly. The trial in Texas (which is not available in Canada), would infuse donor T cells into Julia giving her healthy strong T cells to keep the B cells under control. The goal is to keep her EBV under control and hopefully prevent another relapse. The trial is not yet open but hopefully will be available later this year. Our oncologist has been in contact with doctors in Texas and they have agreed that Julia would qualify for this study. Since the trial is not yet recruiting our options after treatment are very limited, leaving us only able to watch and see what happens. We have decided that if Julia's EBV levels rise we will reintroduce an antibody/chemo drug (Rituximab) weekly to suppress the B cells. I know this all sounds very complicated but as you can see the real test now is what will happen once Julia is off treatment???? We remain optimistic that Julia will do well and remain in remission therefore not needing any medical intervention.

Thanks again for all your support, and I hope(if Julia is well), to see you all at the healing mass on Saturday.

Nadia

Update on Julia

2010-05-02T09:24:00.000-07:00

Hi Everyone,

Julia started her 4th cycle of chemo on Wednesday and it is hitting her really hard. On this cycle she receives chemo for 6 days straight 24 hours a day, and she is introduced to a new chemo drug which she has not had in the past. On Friday she spiked a 40.3 degree fever and Tylenol isn't working. She has had high fevers now for 3 days and is vomiting despite being on 2 anti nausea medications. Her counts are dropping and she may require a blood and platelet transfusion early this week. All she has done for 3 days is sleep and "grow up" as she calls it. Since her fevers are so high and we can not bring them down doctors have stared 2 antibiotics to cover her. If these fevers are chemo related they expect that she will feel like this until at least Wednesday when the chemo is done. It is so hard to see her like this and not be able to do anything to make her feel better.

Please keep her in your prayers during this tough week of chemo, and pray that she feels better soon.

Thanks
Nadia

Healing Mass for Julia

2010-04-28T20:04:00.000-07:00

We would like to extend an invitation to all family and friends to attend a special healing mass for Julia at St Patrick's Church in Markham. The mass will be held on Saturday May 15th @ 11:00am. All are welcome.

We would like to thank St Patrick's Church and St Julia Billiart Catholic school for organizing this mass on Julia's behalf.

Address: 5633 Hwy 7 between Markham Rd. and McCowan.

Thank you,

Mary

Good News

2010-04-25T19:48:00.000-07:00

Hi Everyone,

Julia had her scan on Friday and doctor's were very happy with the results. The scan was essentially normal. We could not have asked for better. Julia had a really good week. She was full of energy and felt great. We got a weekend pass and were able to take her home Saturday and not return until Sunday night. She was so funny last night when I put her to bed, she said "mommy it's been so long since I slept in my bed". She had a great time at home, and Anthony and Emily were also thrilled. I have to admit it was a little bitter sweet. It was great to be home and do normal things, but it was awful to have to come back after getting a taste of freedom and normal life. I actually enjoyed cooking and cleaning....you know I'm really home sick!!

Julia is actually scheduled to start her next cycle of chemo Tuesday but it doesn't look like she'll be ready. Her counts are still bottomed out, she has not had count recovery yet. She needs to have a neutrophil count of at least 1.00 before starting chemo, and Saturday morning's count was only 0.1, so it looks like we will be delayed.

I will keep you all posted on Julia's progress this week.

Thanks for everything.

Nadia

Update On Julia

2010-04-20T20:30:00.001-07:00

Hi Everyone,

Julia had a great day today. She was in a great mood and felt the best she's felt in a long time. We were given a day pass on Sunday to go home and it was wonderful. It felt so good to be home as a family and the kids just loved it. Anthony and Emily were so excited to have Julia home. They played games, built forts, and even went for a bike ride. Of course the day was not long enough, and Anthony had quite the meltdown when it was time for us to go back to the hospital. Julia was like a 30 year old, she turned to Anthony and said "it's okay Anthony, I have to go back to the hospital now, don't cry". It was heart breaking, Anthony cried and begged me not to leave him. He understands that this is where I need to be but he is missing me more than I realized. I can't wait to get out of here and spend some much needed quality time with the kids. Most of the time I am so wrapped up with Julia that I don't often have the time or energy to think about the impact this is or will have on Anthony and Emily. I thank god everyday that my parents are willing and able to take care of them and that they provide a safe and loving environment for them.

Julia is scheduled for her PET/CT on Friday and this will be a big day. The scan must be disease free for her to move on to cycle 4. Having no doubt that the scan will be good, Julia will start cycle 4 next Tuesday, and then only 1 more to go. I can't wait.....I am starting to see the light at the end of the long and dark tunnel. I am going absolutely crazy in here, and getting to go home on Sunday made me realize how much I am missing and how not normal life in here really is.

That is all for now and I will let you all know the results from Julia's scan. Please say a prayer on Friday for her.

Thanks
Nadia

Biopsy Results

2010-04-13T21:11:00.001-07:00

Hi Everyone,

I wanted to let everyone know that Julia's biopsy showed improvement. The doctor called it a "healing" biopsy. Rejection is rated 0-3 and Julia's previous biopsy (2 weeks ago), was a high end level 2 rejection which was considered multi focal. This most recent biopsy was a level 1 - which is what we wanted and needed. A 0 rated biopsy meaning no rejection would have been nice but not expected. Since it seems like the rejection is under control we will continue with the Oncology side of things and hopefully we will catch a break and have smooth sailing until the next cycle (which will start around the end of April). The heart transplant team discussed doing a follow up biopsy in 4-6 weeks but nothing has been confirmed yet. For now we will continue with weekly echo's and will be monitoring her closely. These results have provided a sense of relief for now and maybe after 3 weeks of worrying and sleepless nights I can finally get some much needed sleep.

Julia will get a break from chemo for a few days and get one last chemo on Friday to finish cycle 3. Then we will wait a couple of weeks for count recovery which will conclude the "Induction" stage. She will then have all her testing and scanning at the end of next week to determine how well the chemo worked. She is expected, actually she must be, disease free in order to move on to the "Consolidation" stage (cycles 4&5). So as you can see we will only get just over a week to relax a little before undergoing all the scans and of course waiting for results. If you remember after the 1st cycle "Reduction" Julia showed a 20% reduction in disease, but the cancer was still there. She has not been scanned since then and with the unexpected episode of rejection and the need for strong immunosuppression to save the heart I am very nervous to see what these scans will show. Please pray that Julia's scans will show NO DISEASE, and we will progress to the next and final stage of treatment. If all goes well and we stay on schedule we should be home by end of June beginning of July.

I will keep you posted on Julia's progress as I can.

Thanks
Nadia

Quick Update

2010-04-11T18:46:00.000-07:00

Hi Everyone,

Just wanted to let everyone know that this week Julia started cycle 3 of her chemo protocol. She received chemo all week and did pretty good. She had a few headaches and an upset stomach but overall she handled it quite well, with the exception of one of her chemo drugs. One of the drugs Julia gets is so powerful that 24 hrs after receiving it they give her a "rescue" drug to get the chemo out of her system. Unfortunately, Julia still hasn't cleared this drug from her system. Normally the drug should have been cleared by hour 48 - 72, we are at hour 120....of course Julia doesn't follow the rules once again. This upcoming week is where her counts will bottom out and she will be at an increased risk for infection. Due to her severe neutropenia we ask that no one visits until counts recovery. Julia had a heart biopsy on Friday to check if the rejection is gone and the results will be back tomorrow. We are quite anxious for results to make sure everything has settled with her heart.

On a good note, Julia is finally starting to like her nurses and even starting to trust them. We are so lucky that we have the best nurses ever. They are so kind, patient, and understanding, and even though Julia did not make it easy for them they didn't give up. They continued to try and gain her trust and friendship. I am very grateful the nurses have been so good to us, especially Julia.

I have to go but will update all of you with biopsy results as soon as possible.

Take care,
Nadia

Easter at Sick Kids

2010-04-04T19:07:00.000-07:00

Hi Everyone,

Although we had to spend this Easter at the hospital it was great to be all together. Here are some pictures from our day. Nadia and Elio wish all of you a Happy Easter.

Thanks,

Mary

What a Nightmare

2010-03-30T08:25:00.000-07:00

Hi Everyone,

This last week has been the worst week ever, I don't even know where to start.

As I mentioned in my last update Julia had been having fevers for more than 5 days. So on Wednesday they sent her for a CT scan to look for fungus (once again). They didn't see any fungus but what they did see was fluid around her heart and lungs. They ordered an echo to confirm the fluid around her heart. About 10 minutes after the echo was done our transplant doctor came to see us. As soon as I saw her I knew something was wrong. She told me that she was not happy with the echo and that she suspected that there may be some rejection going on. She started her on high dose steroids, put her back on her immunosuppression, and told us Julia would go for biopsy the next morning. Thursday morning Julia went into the OR for her heart biopsy, half way through the procedure the doctor came out to tell us that there was so much fluid that she felt they needed to put in a chest tube. They paged all our doctors and one by one they entered the OR. The surgeon came out and had us sign consent to put in a chest tube in order to drain all the fluid. So Julia came out of the OR after biopsy with this huge tube sticking out of her chest, and she still has it. Friday was a very long day as we anxiously awaited the biopsy results. Finally that night at 7:30pm the doctor called to tell us that the biopsy confirmed that Julia had rejection. She felt that she was already on the right treatment and we would wait and see what the echo showed. On Saturday Julia started having arrhythmia's so an emergency ECG and echo were done. The ECG confirmed that their were some arrhythmia's happening and the echo was unchanged. Because of this Julia was moved to the ICU for closer monitoring and started on a more powerful drug to stop the rejection. Julia remained in the ICU until last night. She has had no more arrhythmia's and yesterday's echo showed huge improvement. Doctors feel that the rejection is under control and she is out of danger at this point.

Yesterday afternoon I had a meeting with our Heart Transplant doctor and our Oncologist. Basically most of the questions I had could not be answered. Doctors do not know why Julia has experienced rejection while on chemo, they have never had a patient have rejection while receiving chemo. It makes no sense, and there are no good answers, all it proves is that Julia will need to stay on her immunosuppression drugs while receiving chemo. The plan from Heart Transplant is to do weekly echos and re biopsy in 2 weeks to make sure the rejection is gone. From the Oncology side of things we have taken a few steps back because of the episode of rejection. We have had to go back and repeat Cycle 1. We have started this today, and will have a lumbar puncture with chemo tomorrow. We will repeat cycle 1 (the reduction stage), and then jump back to cycle 3. Unfortunately we have had to make the protocol up as we go along for Julia. We have had to take out one of the chemo drugs because it is hard on the heart, and oncology is not comfortable giving it to her.

As you can see things are very confusing. Right now we are really stuck between the heart and the PTLD, and unfortunately in order to help one we could comprise the other. We are all in agreement that the heart is priority right now. This episode of rejection could have cost us the heart and although we were able to catch the rejection in time (thank God), we have potentially caused harm to the PTLD. Julia's oncologist is amazing, and I am fully confident that she will come up with the right plan for Julia. We will all work together in order to do what's safest for Julia.

Once again Julia has proven to be the exception, but this time she really has everyone puzzled. She doesn't follow the rules, she makes them up as she goes. I thank God everyday that she is so strong because this is what has and what will get her through all the obstacles that come her way. The last week has been incredibly hard, and being back in the ICU was devastating. You can imagine that with a total of maybe 5 hours sleep in the last week, no eating, way too much coffee, I am absolutely physically and emotionally exhausted.

I am sorry to be ignoring everyone right now but I need time to re energize as I feel completely defeated right now. I do ask that you all continue to pray for Julia as she continues on this long and hard road to recovery. And if possible please ask that she get a break some time soon....no more complications!!!!!!

Sincerely,
Nadia

Update on Julia

2010-03-21T17:44:00.000-07:00

Hi Everyone,

After reporting on my last update that Julia was well and had not developed any fevers.........on Tuesday Julia developed high fevers which made her feel really crappy this week. She was once again started on antibiotics and put into isolation. She also tested positive (again), for C-diff (a stomach infection) and began different antibiotics for the infection. Her counts totally bottomed out this week and she required a blood and platelet transfusion. On a good note her counts have quickly started to recover and she should have total count recover this week. This will be just in time for her next cycle. She will start her next cycle of chemo next Tuesday.

I don't have much energy to write tonight as the days are turning into weeks, turning into months, and things are really getting to me. It feels like we've been in this hospital forever and when I think about it we still have a long way to go. Elio and I really want to thank everyone for all your help. Your cards, e-mails, food, and visits have been very comforting. I will keep you posted on Julia's progress this week.

Thanks
Nadia

Quick Update

2010-03-14T21:41:00.000-07:00

Hi Everyone,

Julia will finish her first week of high dose chemo tomorrow. She did exceptionally well on Monday and Tuesday, but starting feeling a little sick on Wednesday. She had some vomiting and is suffering from stomach aches and headaches. She is getting a little weaker and more tired each day as her counts drop. She will probably be bottomed out by tomorrow and most likely need a blood transfusion tomorrow. She is feeling exactly the way doctors expected and thankfully she has experienced no major side effects or complications. She has had no fevers or mouth sores yet, although her hair has started falling out. Overall, she is doing well given the circumstances, and hopefully she will continue.

Julia is a fighter and believe me she has had to fight since 6 months old. It is amazing to see how strong this little girl really is. As I watched her last week with at least 8 lines going at once with pre chemo drugs, then chemo after chemo, and then post chemo drugs my head was spinning. I was sick just watching everything that had to go through this little girls body. But not Julia.......she continued to be feisty, bossy, and she made sure to tell the nurses exactly what she thought of them (good and bad)!!! This incredible little girl has had to endure more in 4 years of life then most of us will in a lifetime. It is her strength and stubbornness that is my inspiration.

It's been 7 weeks and things are starting to get to me. The lack of sleep, the lack of privacy, and most importantly the lack of time I've gotten to spend with Anthony and Emily. Although I know that this is where I need to be and that right now Julia needs me more than anyone, I can not help but feel guilty for leaving Anthony and Emily. I keep thinking about all the time I am missing with them, and that I can never get it back. I don't know why our family has been tested over and over again but I hope and pray everyday that at the end of all this we will get the much needed and deserved quality time all together.

Thanks again for all your support and I will try and update you all weekly. In the meantime, please keep Julia in your prayers.

Nadia

Update on Julia

2010-03-05T13:49:00.001-08:00

Hi Everyone,

Just a quick update to let you all know that Julia finished her 1st cycle of chemo yesterday. She did very well just like doctor's expected. The high dose steroids made her crazy, and she was extremely angry and violent towards everyone including nurses. Her CT scan showed improvement and doctors are very pleased that she's showed quick response to treatment.

Tomorrow will be the start of our rough ride, as Julia begins cycle 2 of her chemo. This is the "induction stage", where she will start high dose chemo and begin feeling unwell. She will receive one 6 hour chemo tomorrow, have a break Sunday, then get 3 high dose chemos Monday, 2 more on Tuesday along with a spinal tap (chemo in her spine), and one more on Wednesday, Thursday, and Friday. This will be a tough week. Doctors are expecting that her counts will bottom out by week's end, and total hair loss by mid March

On a funny note, when I told Julia that she would be losing her hair, she asked me why. I told her that it was because of the medicine she will be getting. She said "like Zoe?" (a hospital friend). I said yes, and she said "ok mom". I asked her if she wanted to cut her own hair. At first she said no, but as the day went on she changed her mind. It was so cute I gave her a pair of scissors and she stood there asking me "mom, are you sure it's ok?". She had so much fun giving herself a haircut.....it's a little uneven but it's cute.......and most importantly she had a great time doing it.

We want to thank everyone for all your support, wonderful words of encouragement, and keeping Julia in your prayers. I will let you all know how she does next week. Once again please keep her in your prayers especially on Monday and Tuesday as she goes through 2 intense days of chemo.

Thanks
Nadia

Heartbreaking News

2010-02-25T20:17:00.000-08:00

Dear Family and Friends,

Elio and I received final pathology results today from Julia's neck and stomach biopsies and they both showed relapse of PTLD. Therefore doctors are raising the stakes with chemotherapy. She will have to do a 5 month in patient intense chemo protocol starting tomorrow. Which means the hospital will be our home for the next 5-6 months. There are 5 cycles combining multiple chemo's including injecting chemo directly into her spine. Doctors have prepared us that this protocol will be very intense and Julia will probably feel sick, and that the potential for major infections is high. She will have to be monitored very closely and could encounter some major complications. They will begin tomorrow with the first phase which they call the"reduction cycle". This is where they will introduce 4 different chemo's at low dose (including one in her spine), for one week to prepare her body for high dose chemo. After the first week she will have a PET scan and she must show 20% reduction of disease to continue to the next phase. The second phase is called the "induction stage". This includes 2 cycles of high dose chemo (multiple different chemo's). Each cycle is 21 days long, and this is the stage where she will be at the most risk since this is the stage they completely wipe out her immune system. After these 2 cycles she will be rescanned and should be disease free. If she shows no disease she will move onto the last stage which is the "consolidation phase". This consists of 2 cycles each lasting 10 days long. At this stage they will introduce the last high dose chemo drug which is a 24 hour chemo infusion for 5 days. At the end of all this we hope to be in complete remission. Since she will be so suppressed she will be taken off her anti rejection medicine while on chemo. There is a fine line between fighting this disease and making sure there is no rejection of the heart.

I know this is a lot to absorb and very confusing. I have gotten a lot of calls wanting to know what is going on so I've done my best to try and keep it as simple as possible. Obviously this is a lot to explain and I can't possibly explain it over and over to everyone.

We are all still trying to absorb the news and thinking of how we are going to mange for the next 5 months. We have a lot of planning to do in order to manage not only Julia but Anthony and Emily as well. Not to mention work, school, and everyday life. Although we have always tried to remain optimistic this last news has really hit us hard. As you can imagine there are so many emotions happening at the same time. We are sad, angry, anxious, confused, worried and most of all scared about how this will effect Julia. She will experience the full effects of chemo this time with mouth sores, infections, and total hair loss.

This has been a very difficult day and will be an even more difficult week as we begin chemo and embark on once again another battle. I am not very good at calling people and I know a lot of you just want to talk to us, so please give us a couple days to re group and think about arrangements we need to make for the next 5 months, and then feel free to call me......we need all the support we can get right now. You guys have been so loving and supportive and I want you to know that without all your support we could not get through this. I will try and keep the blog updated weekly so you can follow Julia's progress. I know I have asked a million times but please say a prayer as Julia begins a long and tough road to recovery.

P.S. There will be some princesses coming to see Julia at the hospital tomorrow so I will post some of the pictures on her blog tomorrow.

Sincerely,
Nadia

Cindrella and Belle Visit Julia and friends at Sick Kids

2010-02-24T18:44:00.000-08:00

Hi Everyone,

On behalf of Julia and the family and friends on 8A, we would like to say a big Thank You to Marina for arranging Cinderella and Belle to come visit us at Sick Kids Hospital today. Julia and her friends had a great time with Cinderella and Belle with some dancing, story telling and colouring. Julia was very excited to see Cinderella and Belle that she waited for them in the hallway to come up the elevator, Julia was asking all morning even after she woke up from her chemo session, so when they arrived she was shy and excited to see them. We wanted to share this day with everyone with some pictures we took Enjoy!!

Mary

Quick Update

2010-02-23T15:00:00.000-08:00

Hello Everyone,

I don't have much time or energy for a long update but I know a lot of you are waiting for news. I will begin by letting you know that clinically Julia is feeling better this week.

As some of you know Julia went into the OR last Tuesday for a lymph node biopsy (they took 3 lymph nodes in her neck out), a stomach and bowel biopsy, and a spinal tap. Unfortunately we don't have final results, but we did get preliminary results today from the lymph node they removed in her neck, and it looks like it is showing PTLD. This is however preliminary and further staining needs to be done. The gut biopsy is not reported yet. Doctors will have final results in a couple of days and come up with a plan. It looks like we will be moving to high dose chemotherapy. I don't know what chemo, how long treatment will be, or if we will need to stay in patient. It has already been 1 month we are in the hospital and the plan is to start some sort of treatment on Thursday so I suspect we will be here for awhile.

Elio and I are still trying to take in the news we got today and anxiously awaiting final pathology reports to get a clearer picture of what's going on. For now it looks like we are looking at a relapse. I will update the blog by the end of the week with final results and plan. In the meantime please pray for Julia.

Sincerely,
Nadia

Update on Julia

2010-02-13T18:54:00.000-08:00

I wish I could report better news but unfortunately Julia is still running fevers and feeling unwell. Since this is day 5 of fevers they have started a fungal workup and put Julia on an anti-fungal medication. Julia's blood work continues to be up and down, and on Thursday she required a blood transfusion.

On a better note her heart biopsy was good and her bone marrow showed that she is producing good cells (not cancer cells), but that those cells are being destroyed somewhere and by something. The tricky part is trying to figure out where and why? Unfortunately because these tests could not rule out relapse and since she continues to have stomach issues she will under go a biopsy of her stomach and bowels. She will also have one of the lymph nodes in her neck biopsied. The surgeons spoke to us on Friday and they will try and get her to the OR on Tuesday. The combined procedures will probably be approx. 3-4 hours. Doctors are hoping that with the tissue from the lymph node and gut they will be able to declare or rule out relapse.

On another sad note we were suppose to leave on Julia's "wish trip" to Disney tomorrow morning. Obviously given what's going on we had to cancel the trip. We are very disappointed but are confident that we will be able to reschedule when Julia is better.

This has been a very difficult few weeks. With Julia feeling unwell I am extremely nervous and anxious and that makes each day feel so long. I have only gotten to see the other kids once and I am missing them like crazy. I wish I could talk to all of you but unfortunately I can barely find the energy and words to talk to doctors. I will continue to update the blog as I can and will contact all of you soon. Please continue to keep Julia in your prayers, as this is all we can ask for right now.

Sincerely,
Nadia

Quick Update

2010-02-10T09:22:00.000-08:00

Dear family and friends,

Just wanted to let everyone know that Julia had her heart and bone marrow biopsies yesterday. She also had her PICC line put back in. Doctors felt that she really needed to have a line in for access. She was in the OR for almost 4 hours for all these procedures, and she felt really sick after the anesthetic. She spiked a 39.6 degree fever last night and was put back on antibiotics. She had a rough night last night with high heart rates and low oxygen levels......it was pretty scary. She continues to have fevers today and is quite tired. Her heart rate remains high but doctors think it's because of the fevers. Her scan on Friday did not really give us any good answers. The exact words from the docs were "it's not good but it's not bad". There were some concerning things that showed up on the scan but doctors are still not sure how to interpret the results. They are waiting for final report on the scan and the results from yesterday's tests before they re group. We do not have any results from yesterday's test but hopefully we have some answers tomorrow.

We ask that you please say a prayer for Julia during this rough ride.

Thanks
Nadia

Quick Update

2010-02-02T18:23:00.000-08:00

Hello Everyone,

Unfortunately I write to you all from Julia's hospital room. As many of you have heard Julia was admitted on Friday from Oncology clinic. Her Oncologist came in letting us know that Julia's blood work was very worrisome. There were many markers that indicated that the PTLD may be back. Julia has been very very sick the last few days. She has tested positive for RSV, C-Diff, and a Urinary Tract Infection. She is receiving heavy duty antibiotics, and has had to start IV nutrition because she is unable to eat and barely drinking. These are 3 big infections so hopefully this is the reason she is so unwell. Doctors are trying to remain optimistic but given her history they must investigate to see if the cancer is back. She will have a PET/CT on Friday, and a heart biopsy with a bone marrow biopsy on Tuesday. They may also do a scope of her stomach and she may need to go to IGT and get her PICC line put back in. We will wait patiently for all our tests and have a departmental meeting with Oncology and Transplant next Wednesday afternoon to review results and come up with a plan.

As you can all imagine this is a complete nightmare. Especially because we are suppose to leave on Julia's "wish trip" to Disney in less than 2 weeks.

I have been getting numerous calls and I apologize for not answering or returning calls but I can not possibly talk about this with everyone, and quiet frankly I have nothing to say. I thought it would be easier to keep you all informed through the blog. I know you all have a lot of questions and your very concerned but honestly we have no answers, and we will not know anything until next week. I will try and keep everyone posted via the blog.

Thank you so much for all your support.

Nadia

Update

2010-01-24T16:27:00.000-08:00

Hello Everyone,

I apologize for not updating everyone sooner but it has been a crazy month. Julia has had several admissions in the last month due to fever/neutropenia. Her latest admission last week had doctors a little worried about her. She is losing weight, has no appetite, very pale, and very tired. She seems to be getting fevers (with no cause), every 2-3 weeks. Julia is scheduled for a CT scan on February 26th, but her Oncologist feels like we need to move it up. She will try and get the scan done sooner. Of course Julia's blood work continues to be awful, with no explanation. Doctors are at a loss and can't explain the dropping counts. They are planning to do another Bone Marrow biopsy with her CT scan. We have increased her injections to see if this will help improve her counts. The problem is trying to figure out if her symptoms are viral or if there is something more serious wrong. I am trying to remain optimistic that this is just a virus which is taking Julia a little longer to get through.

As you can imagine I am in no mood to talk to anyone and can barely find the energy to write on the blog. I am very worried right now as I watch Julia deteriorate and wonder what is going on. I will try and keep everyone in the loop the best I can, but truthfully right now I am a mess. I thank everyone for your on going support and ask that you say a prayer for Julia.

Sincerely,
Nadia

Quick Update

2009-12-15T20:01:00.001-08:00

Hi Everyone,

Just wanted to let everyone know that Julia's PICC line came out Friday. After lots of screaming and crying, she was so happy to have the line out. She was dancing around shaking her bum and singing "no more PICC line, no more PICC line". She also asked me if we could have a PICC party. It was so cute!!! When she went to school on Monday she took her top off for her teacher and classmates to show them that she had no more PICC line......that's Julia.

She is due back at the hospital next week for blood work (she'll have to be poked.....she won't like that), and echo. Then we get a break for the holidays and return the 2nd week of January.

We would like to wish everyone a very Merry Christmas and Happy New Year.

Nadia

Julia Update

2009-12-09T20:23:00.000-08:00

Hello Everyone,

I apologize for the length of time since the last update, but things got a little crazy. Julia was admitted to hospital on November 19th (Emily's 1st birthday), for fever/neutropenia. She was feeling unwell and complaining of ear pain so I took her to the pediatrician thinking she had an ear infection. When we got to the pediatrician's office she was running a fever of 39.3, and did in fact have a bad ear infection. He immediately called down to Sick Kids and we were instructed to bring her down immediately. For those of you who don't know Julia continues to be neutropenic (no white blood counts), and because of this the protocol when she gets a fever is automatic admission with IV antibiotics until they can prove that there is no bacterial infection in her blood. The reason for this is because people who have no white counts can't fight off bacterial infections, and could go into septic shock. Perfect example, Julia's ear infection wiped her on her butt because her body couldn't' even fight off a simple ear infection. While in hospital she also developed some stomach issues, and low magnesium levels. What was suppose to be a 1-2 day admission turned out to be 6 days. We had to give her injections daily to boost her counts, and give her IV magnesium because she could not hold her own magnesium levels.

After being discharged on the November 24th, we had to be back that Friday the 27th for Oncology clinic. We arrived at clinic Friday and Julia spiked a fever and was looking very unwell. Her Oncologist also detected a heart murmur that has never been there before. It was complete chaos. We were immediately sent to the day unit and Julia was hooked up to antibiotics as her Oncologist paged the transplant team about the murmur. I was alone and started to completely panic. I began pacing back and forth and then just broke down in tears to the doctors. Cardiology did an Echo and reassured me that the echo looked good and the murmur could be from the fever. I had to cancel Emily's 1st birthday party when Julia was admitted and I had rescheduled it for that Friday night. The thought of being admitted and missing Emily's party was to much to bare. Because of this the doctor allowed Julia to go home that night with the condition that we would return Saturday for another dose of antibiotics. So we came home (just in time for the party), had Emily's party (a bundle of nerves), and went back to the hospital the next day. What a nightmare!!!!! One thing I will be sure to tell Julia when she gets older is that she has impeccable timing!!!

Julia was scheduled to remove her PICC line this Friday, but after dropping counts, rising EBV titers (this is the kind of PTLD she had - EBV driven), and generally looking unwell, the doctors were unsure if this was a good idea. After numerous e-mails back and forth we have finally decided that the risk of infection keeping the line in is to high. Generally a PICC line is used for 6 months and Julia has had hers in already 7 months. The plan is to see the doctor Friday morning, do all the blood tests, have a complete physical exam, and then if all looks good be sent to IGT for removal of the PICC.....I hope.

Julia has been feeling a lot better the last week, and I think it just took her a little extra time to bounce back from the ear infection. As I've stated before the neutropenia is a big problem and can really set her back from the simplest of infections/viruses. The problem is once an Oncology patient the minute these kids get sick (with anything), everyone worries. Julia's repeat CT has already been scheduled for February 26th.

On a happy note we have confirmed Julia's "wish" trip with Children's Wish. We will be leaving on February 14th for a week. We will be going to Orlando and staying at a special resort called Give Kids the World (which is a Disney resort only for wish kids). We will have 7 day front of the line passes at the parks, and Julia will have a princess makeover, lunch with Cinderella in her castle, and get to meet all her favorite Disney characters. She is so excited and asks us everyday how many more sleeps until we go. We just hope and pray that she will stay well enough until then.

I would like to take this opportunity to thank Styles of Creation hair salon and Farmer Jack's for the donations they collected for Julia. A special thanks to Avante Property Services for your generous gift to Julia. We are very grateful and touched by these extreme acts of kindness.

I will keep you all posted on what happens Friday. Please cross you fingers and say a prayer that all goes well and as planned.

Sincerely,
Nadia

GREAT NEWS FOR JULIA

2009-11-10T10:10:00.000-08:00

Hello Everyone,

I am so happy to report that we received news last night that Julia's CT scan was normal. She is officially in complete remission. Dr. Punnett will process the paper work to remove the PICC line, and we will go down to monthly clinics. We will continue to check counts weekly for now because of the neutropenia. Julia will have a follow up CT scan in February to make sure things are still good. Otherwise we will continue to be monitored by Oncology monthly to make sure things are staying well.

Julia is looking and feeling good these days. I have spoken to some people from Julia's medical team and they have all expressed how happy they are considering how sick she really was. I don't even think we realized how sick she was, but now that we see her we can really tell the difference. Many medical people have admitted that they weren't even sure she would make it. After hearing this from her own medical team I went and looked at pictures of her and let me tell you I cried for days. It really hit me, looking at those pictures and learning that doctors didn't have much hope really made me realize how horrible she looked and how unstable she really was. Right now we have dodged another bullet and Julia has overcome so much. We are optimistic that she will continue to fight and get through everything that is thrown her way. She is an incredibly strong and determined little girl, who will survive no matter what obstacles are in her way. Now that we have been cleared and her PICC line will be removed soon, we are working with Children's Wish to grant Julia her dream of meeting Cinderella. She is so excited!!!!

I want to take this opportunity to thank so many people for all your love, support, cards, e-mails, phone calls, and donations. Without the help from our family, friends, and strangers like you we would not have been able to get through these difficult times. I would like to let everyone know that we will be making a donation in the amount of $3000 to the Oncology Unit at the Hospital for Sick Children in Julia's name from the donations we received. I really believe it is so important to give back, and the hospital needs as much help as they can get. It is a great hospital with amazing doctors who dedicate their lives to our children, and they have saved Julia's life more than once. I want to encourage people who can to join Sick Kid's Miracle Club. For less then a coffee a day you can be helping so many children like Julia. This hospital and these doctors and nurses work endlessly to save our children's lives everyday, but unfortunately they don't have all the answers to save all the children, but maybe with our help one day this will be possible.

I will continue to post and keep you all updated on Julia's condition, and I promise once I have had time to take it all in, and absorb that this is the end I will return all the phone calls.....just bare with me. Thank You, Thank You, Thank You.

Sincerely,
Nadia

The Suburbanaires Nolan Fund

2009-11-03T16:59:00.000-08:00

Julia has been blessed with so many people in her corner as she fights this terrible fight.

One such group, the Suburbanaires, have generously contributed to Julia's foundation through The Nolan Fund. Please read their story below.

THANKS SUBURBANAIRES. MAY YOU CONTINUE ON YOUR JOURNEY OF MUSIC AND ENTERTAINING OTHERS!!

The Nolan Fund

The fund was established in memory of Nolan, grandson of Milt Rainey, Chorus Director of The Suburbanaires, a retired senior "Barbershop Chorus" who meet every Wednesday from September to June from noon until 3 p.m. in Markham.

The purpose of the fund is to assist parents of a child in need over and above what normal agencies cover. Nolan, who was diagnosed with Neuroblastoma cancer at sixteen months of age, spent a good portion of his short life in Sick Kids Hospital. The Suburbanaires were able to help cover the parking fees for his parents on their visits to Sick Kids.

Every Wednesday at chapter, the Suburbanaires are collecting pennies, nickles, dimes, quarters, loonies, toonies and even paper money in a specially built "Pennies for Nolan" box, to help build the fund. The Suburbanaires are constantly looking for ways to be of financial assistance to parents in need.

We have learned the plight of your child, Julia Morreale, and feel this is exactly the situation for which the Nolan fund was intended. To help you out, the Suburbanaires would like to make a donation of six hundred dollars ($600.00) to assist your family in caring for your child, to be used as you see fit.

We are hoping for the best for Julia. On behalf of the Suburbanaires, I am

Milt Rainey
(Music Director)
902 Lilac Terrace
Whitby, Ontario
L1N 2A5

Julia Update

2009-10-27T08:13:00.000-07:00

Hello Everyone,

Julia was at the hospital last Thursday for Heart Transplant clinic, Oncology clinic, and a GFR (kidney test). The good news is that Julia's heart biopsy was good. It showed mild rejection, which is expected. The team does feel that this biopsy was a little soon after chemo so although they were very happy with the results they will re biopsy her in 6 months. Her kidney test showed mild improvement from last year, and they will continue to monitor her kidneys. From a heart transplant perspective everything looks good. The chemo seems to have had no drastic effects on her heart. They were very happy with the weight she has gained. She is finally at an age appropriate weight. The nurse even joked and said "wow! It's amazing what a little chemo will do". We are scheduled to have clinic again in December along with an echo (test to check heart function).

We then went to see Dr. Punnett from Oncology. She is the most amazing, caring doctor I have ever met. We talked about the fact that Julia is still neutropenic (no immunity). She agrees that at some point we will have to take her off her injections (as she has been on it for 1 year), and see if she can hold her own, but she will not trial her off until at least 6 months post chemo. So it looks like we have to put her through these injections for another 4.5 months. One of her blood tests which were showing an abnormality in her T cells (very concerning), has returned to normal. I know most of you have no idea what I am talking about but this is fantastic news. Dr. Punnett believes these cells were reacting to the PTLD. She stressed how important November 6th's CT scan is. She told us that this is "the big day". This will give doctors an idea of how well the chemo worked? If she is in complete remission? or will we have to continue with more chemo? All we can do right now is wait patiently and hope and pray for a good scan. We will meet with Dr. Punnett after recovery for the results of the scan. If the scan is good we will make plans for taking out her PICC line, and go from weekly blood work and clinic to hopefully monthly blood work and clinic. The protocol for PTLD is a 1 year follow up with Oncology until we will be considered free and clear.

Julia is feeling good, and having an amazing time at school. She is so excited to be able to do everything Anthony gets to do. She has become better and better with the hospital visits and her home care nurse who comes in everyday. She even has started giving people lessons on her PICC line, how it works and what it's for. It's actually quite funny and also so sad at the same time. She has made so many friends at the hospital, and all the nurses make her feel so special.

Once again Elio and I thank you all for your thoughts and prayers, and ask that you all say a prayer for her scan on November 6th. We have been so stressed out and worried about this scan. It all comes down to this scan. The last 6 months of hell all comes down to this one day. It could finally be the end of a horrible journey or the beginning of complete hell. I will let you all know once we receive the results from the scan.

thanks
Nadia

Update on Julia

2009-10-17T07:57:00.001-07:00

Dear Friends and Family,

I apologize for not updating everyone sooner, but things have been crazy.

Julia had her heart biopsy and Oncology clinic yesterday and she has recovered fairly well. She has lost her voice a bit from having the breathing tube down her throat, and she is a little dizzy and unbalanced today but overall she is feeling quite well. It's amazing that no matter how many biopsies Julia has had I never get used to it. My heart races, my head fills with awful thoughts, and I am in complete panic. Carrying her into the OR crying and begging me to make them stop is torture. Julia has come to understand exactly what is going on. She knows when I gear up in the white gowns, and surgical slippers and hat we are going to the OR. As I carried her into the OR yesterday, a cold room which is filled with machines, doctors and nurses I thought about how many times we've had to put her through this, and that she should be at school playing with all her friends, not here. She wrapped her hands around my neck for dear life, and screamed "no mama, no mama, make them stop". As they injected the "sleepy medicine", into her PICC line the screaming got less and less, until she passed out and became complete dead weight in my arms. Having to lie her on the operating table and leave her there with machines beeping away is something I will never get used to. We waited patiently for an hour and half, (which felt more like 10 hours), and then we were finally called into the recovery room to see her. She was still completely knocked out, and I found myself staring at her monitors and jumping off my seat every time they rang off. After a few hours in recovery we were discharged.

After biopsy we met with Julia's oncologist, Dr. Punnett. Julia's blood work continues to be up and down, but thankfully she has manged to stay well. I think that this will be the case for Julia. Her blood work will continue to make no sense some weeks and fine others, so we will have to go by how Julia is feeling. Dr. Punnett seems to be a little concerned with some subtle changes we have seen in Julia, so she has changed us back to weekly visits. She does not want to speculate on anything until we have her CT scan on November 6th. I tried to discuss taking out the PICC line, but Dr. Punnett felt like we should wait for the CT results and then make a plan. She has decided that she will scan Julia every 3 months as appose to every 6 months. I think she feels that Julia is very unpredictable and complicated so she would prefer to keep a closer than normal eye on her. I really thought that once chemo was over we would be out of the Oncology scene, (and I desperately need this because I don't know how many more kids I can see pass away), but that doesn't seem to be the case. Some days it feels like we will never get a normal life back. I am very grateful that Julia has done well, and have to remind myself everyday that the day will come where we are free and clear of Oncology, it's just taking a little longer than expected.

Julia was granted a "Make a Wish" from the Children's Wish Foundation when she had her heart transplant, so we are really hoping that we will be able to grant her that wish very soon. Her wish is to go to Disney and meet Cinderella. I spoke briefly to Dr. Punnett about this yesterday and she didn't see a problem trying to plan this wish for her in January or February. So we along with the doctors and nurses will work towards getting Julia her wish. I will however have to learn how to give Julia her injections. But we'll deal with that when the time comes.

Julia is loving school and she is in love with her teacher Mrs. Lowrie. She has adjusted better than expected and she is so happy. Julia brought home a paper pumpkin and had to write what she was thankful for on it. I asked her what she was thankful for and she said "school". I tried to explain to her what being thankful meant, I told her Julia what do you thank God for everyday, your family? your friends? etc. she said "no mom, school". She said "Mommy I am so thankful I get to go to school". It was the cutest and most heartbreaking thing at the same time. I thought about it and realized that she is thankful for the simplest things in life. She is the greatest, bravest little girl I know. I am so proud of her, and she teaches us something new everyday. She teaches us that life is a gift, and should not be taken for granted. That we should not overlook the little things in life, and that we should be grateful for everything we have, because there is always someone out there that has is worse. It's amazing that this 4 year old little girl can really teach us all a life lesson.

I want to thank everyone for your ongoing support. Elio and I could not get through this without all your love and support. I really need to thank my parents who without them we really would have gone crazy. They have had to be parents all over again to Anthony and Emily, and totally re arrange their lives around Julia and her appointments. I am so thankful to have such amazing parents.

I would like to ask that you all say a prayer for Julia that her biopsy results are good and that her CT scan on November 6th shows complete remission.

Thanks

Nadia

Julia's 1st Day of School

2009-09-21T17:42:00.000-07:00

Hello Everyone,

Julia had her last cycle of chemo 2 weeks ago, and she did very well. She was neutropenic (no white blood cells), again pre chemo and this will continue to be a problem for us, but unfortunately doctors are puzzled and have run out of options where the neutropenia is concerned. So we will have to be extra careful and hope and pray she can stay healthy. The bad news is that doctors will not be taking out her PICC line until at least end of November. I was really hoping to have the line out sooner but they feel it is very important to be sure she is in complete remission first.

After much discussion with the doctor, and a lot of back and forth we all agreed that Julia could start school. Today was Julia's first day of school and she had a wonderful day. She was so excited this morning she didn't even wait for me to give her a kiss goodbye before running into the kindergarten yard. She is only starting with 1/2 days for now. But of course it won't be our luck for everything to go off without any drama. I drop Julia off this morning go get a coffee, and am just pulling back in the driveway and the school calls. My heart dropped. It was the secretary, who says "Mrs. Morreale just calling to let you know that a child in one of the Kindergarten classes has chicken pox", my response "Holy Shit". So of course I went in to pure panic mode. I called Sick Kids, spoke to doctors and after much discussion we all agreed that since she was already there it wouldn't make much sense to pull her out. Julia did not come into contact with this child so she should be safe, I hope. When I went to pick Julia up at lunch the principal couldn't help but laugh at the timing and bad luck we seem to be having. Anyways, Julia loved school, and she fit in and adjusted very well according to her teacher. I am so happy for her. When I picked Julia up the teacher shared the funniest story with me. She said Julia got to sit in a special chair this morning and introduce herself to the class. So as she's sitting in this chair she says to the kids "do you know what my favorite song is?". The kids are guessing, Itsy Bitsy Spider, Twinkle Twinkle, etc, and Julia is saying "no, no, no", so the teacher says "Julia what is it?", so Julia gets up and starts dancing and says "I GOT A FEELING, TONIGHT'S GOING TO BE A GOOD NIGHT". That's my Julia!!!!!!

Thank you once again for all your thoughts, prayers, e-mails, cards, etc. I ask that you all continue to pray for Julia as the next few months are crucial for us. I will keep you posted on how Julia is doing, and I promise when things calm down a little I will return phone calls, and respond to e-mails. Thanks for your patience and understanding.

Nadia

***NOTE***
I couldn't help my self as I LOVE that song, and so I made Julia her own music video!!-Lot's of love, Ida

THANKS EVERYONE!

2009-09-11T11:04:00.000-07:00

Just a quick note of thanks for every ones continued support of Julia.

On Aug 9/09
Everyone who went on the bus to Casino Rama A Thank you to Elisabeth and Bruna for organizing!

On Aug 16/09
Everyone's support at Vagkraft a Thank you to John, Kris, Claudio and Davide...be sure to check them out next year as well!!

Aug 31/09
Everyone who took part of raising funds at GLEN EAGLE GOLF COURSE mini putt.
A great big thank you to Al Mack & everyone from Mack Mechanical , Scott and Sandy

We are all so thank full for all of your love and support during this time!

For every one not mentioned above, know that your help, thoughts, love and prayers are felt and resonate through this family on a daily basis. Continue to pray!!!

Ida

HAPPY 4th BIRTHDAY PRINCESS JULIA

2009-09-07T18:01:00.001-07:00

Dear Friends and Family,

I am sorry it has taken me so long to update you. This past week was very bitter sweet. I spent my time planning a very special princess party for Julia, and at the same time trying to cope with the loss of a very special little girl.

On Tuesday evening Julia's hospital friend Rayna lost her battle against Leukemia. She passed away peacefully in her parents' arms. It was one of the most horrible experiences ever for me. We have become very close to this family and without their support I would have never made it through the transition to Oncology. They supported, guided, and educated us the whole way through our journey. Julia's weekly routine every morning we arrive at the hospital is to visit Rayna. Spending the week trying to support her parents during the worst thing imaginable and going to the funeral made it very hard to enjoy the party planning. Julia had her birthday party on Sunday and asked us if Rayna was coming. I had to find the right words to explain to Julia what happened. She is too young and doesn't quite understand. All I could tell her is that Rayna is an angel now who lives in the sky. Julia wanted to send her princess balloons to Rayna. So we told her she could let them go up to the sky and Rayna would get them. It broke my heart.

On a happier note Julia is doing very well. Tomorrow September 8th is her 4th birthday. She had her birthday party on Sunday and she had the most wonderful time. It felt so good to do this for her. She got to be with all her friends and family, and meet Cinderella, Mickey, and Minnie. She played, and jumped in the castle, and got her face painted, it was great to see her be a normal 4 year old for the day. No needles, no tests, no blood work, no hospital, just all about fun.................except that her home care nurse Chris was there. LOL. Please see some pictures posted below from her party.

Julia is scheduled for her last cycle of chemo this Friday. We will discuss the plan going forward with the doctors then. She will need a post chemo scan to be sure that the PTLD is gone, and until that happens doctors will not take her PICC line out. This puts me in a very stressful situation because Julia really wants to go to school. Her first day of kindergarten was suppose to be tomorrow. She is so upset and starting crying tonight when I had to tell her she wouldn't be going. I just want her to start living a normal life, and enjoying all the things a 4 year old should enjoy. At the same time I am so scared that she will get sick, and we will have to be admitted again. It has been so wonderful to see her look and feel so good. We will see what doctors have to say on Friday. I will keep you updated.

I would ask that everyone say a prayer for Julia as she goes through what hopefully will be her last cycle of chemo ever. And also for Rayna's parents that they find the strength to get through this horrible time.

P.S. Happy 4th Birthday to Sophia Di Iorio (Julia's cousin - they share the same birthday).

Sincerely,
Nadia

Julia Update

2009-08-26T07:53:00.000-07:00

Hi Everyone,

Julia was at the hospital yesterday for what was suppose to be only clinic and blood work, but unfortunately it turned into an 11 hour day. Julia's doctor was concerned that Julia had blood in her stomach/bowels. Julia has been having occasional blood in her stool, and complaining of stomach pain. One of her blood tests yesterday were quite elevated which made the doctor suspicious that there was something going on in her gut. Therefore she ordered an ultrasound to be sure. The good news is that overall the ultrasound was better then expected. There was some bowel wall thickening, but this is common with kids on chemo. The bad news is that doctors are still baffled at what's going on. Like I've been told many many times in the past by different doctors, Julia is a mystery. She tends to show signs that something really bad is going on but then passes all the tests. And believe me we have had every test imaginable.

It was very funny yesterday as I brought Anthony with us (since he had been asking me forever to bring him), and he was so curious and scared at the same time about what was going on. When Julia had her ultrasound she climbed up on the bed, lifted her top, and watched a movie like nothing was going on. Anthony on the other hand had a look of complete fear, and was asking all kinds of questions about what was going on. He was even scared about the gel the technician put on Julia's belly. It really showed me how different they really are. Overall, it was good for Anthony to be there and understand what Julia goes through on a weekly basis. They got to play in the playroom, and do crafts with the volunteers. He got to meet all of Julia's friends she has made, and see that it's not all bad when we are at the hospital.

Overall, Julia is doing quite well. So well, that I made the request not to go to clinic next week and have Julia's nurse draw her blood from home. She will return the week later for chemo. The doctor agreed that we could try this out, so I pray that this doesn't bit me in the but. We are all happy to get a week break from the hospital.

Julia will get her last cycle of chemo on September 11th, heart echo's on September 11th and October 22nd, her heart biopsy on October 16th, and heart transplant clinic and kidney testing on October 22nd. Once we have finished all these tests I hope and pray that this will be it, and we can have a quiet winter. If all is well we will try and organize Julia's make a wish trip to Disney for sometime early next year, because God knows she deserves it.

I would like to ask everyone to say a prayer for a very special little girl and her family that we met in the hospital who has Leukemia. She is very sick, and is battling a very serious infection right now. Our thoughts and prayers go out to this incredible little girl and her parents.

thanks
Nadia

Update from Nadia

2009-08-19T19:37:00.000-07:00

Dear Friends and Family,

Julia had her CT scan on Friday despite the big mistake I made. A routine for us when going to the hospital is that Julia drinks her milk in the car on the way to the hospital. So since I was at the hospital on Thursday and did this on the way down, on Friday we got in the car and as always - I gave her milk. As soon as she said she was done I realized I had just made the biggest mistake ever. She was NPO (no food or drink), for her CT scan since she had to be sedated. We got to the hospital and they wouldn't take her. I was devastated. I have never forgotten in 3.5 years that she's been having sedated procedures. Things are really getting to me and I am starting to lose my mind. There's just too much to remember; meds, appointments, chemo, transplant procedures, and so on. After begging the anesthesiologist he agreed to take her if we waited the 6 hours in which she would be clear from food or drink, so we did. Let me tell you it was a long day.

At around 6:00 that night Dr. Punnett called my cell phone with results. Overall she was pleased with the results. The lymph nodes in her chest, abdomen, and axilla have improved. Although they are still there they have gotten smaller in size, which is a good thing. The scan was good enough to go ahead with chemo this week. Therefore yesterday Julia received her 5th cycle of chemo, and she did fantastic. Her counts were surprisingly good, and she even managed to push through a cold on her own for the very first time. Doctors were so happy to see her body fight through this cold without support. If all is well Julia will have her last round of chemo the 1st week of September and then her post chemo CT scan around one month later.

Overall she is doing well and we are beginning to see the light at the end of the tunnel with only 1 more round of chemo remaining. It's been a long and sometimes challenging road and although we only have 1 more round of chemo it's not over yet. Dr. Punnett explained that 6 months following chemo is the most crucial time. This is when most children will relapse. So although I will be glad to finish chemo I will be even happier 6 months from now. But as we've learned in the hospital we need to take these things one day at a time, and right now we are very grateful for how much Julia has accomplished.

Julia will be back at the hospital Tuesday for counts and clinic. If all is well, I actually plan to ask for a 1 week break from the hospital. I don't know if I will get it but I will keep my fingers crossed and just maybe we can have a week without hospital visits.

I want to take this opportunity to apologize to my dearest friends and family for being so distant and unavailable. I don't really know why (since Julia is well), but I am going through a very hard time right now. There's days I just want to be alone and not talk to anyone. I hope you all understand. I think when things are crazy you just do what you have to without thinking, and when there's down time is when it all hits you. I promise I will be in touch when I feel better.

Thanks again,

Sincerely,
Nadia

Julia Update

2009-08-06T11:14:00.000-07:00

Hello everyone,

I do not have much time but I wanted to give everyone a short update on Julia. She was at the hospital on Tuesday for clinic and blood work, and it was a pretty uneventful day for a change. Her counts were crazy and we had to make adjustments to her injections, but otherwise she is doing well. She looks good, feels good, and of course is always causing trouble.

Julia will be back at the hospital next week for Oncology clinic, Heart Transplant clinic, blood work, and on Friday for her CT scan. Like I mentioned before if all is well she will begin her 5th cycle of chemo on the 18th.

I will update you all at the end of next week.

Thanks for all your support.

Nadia

Update from Nadia

2009-07-28T18:57:00.000-07:00

Dear Friends and Family,

Julia began her 4th cycle of chemo today and although it was an 11 hour day for her she was an angel. Sadly, for the first time Julia was not feeling very well after chemo today. She was very tired and crying in pain that her legs hurt. She also was very warm and flushed tonight before bed. I felt so helpless as she laid on the floor crying with tears running down her face in pain. It broke my heart. I think the chemo is taking it's toll. Doctors expect that as she receives more chemo her body is becoming weaker and the chemo will have a harder impact each time.

Despite the IV antibody she received last week Julia's counts continue to be nothing. Doctors can not explain why she continues to be neutropenic (no immunity) despite their best efforts to boost her immune system with different medications. This is becoming very frustrating and disappointing, as this continues to be a major problem for us. With no immunity she can easily become very ill at any time. Normally after people get chemo their counts bottom out for 10 - 14 days and then recover, this is not the case for Julia. In fact she should not even be receiving chemo while neutropenic.

On a happy note, I did something yesterday that I should have never done. I took her to Canada's Wonderland and she...............LOVED IT. For those of you who know the rules, Oncology has very strict guidelines on visitors, and being in any public places while on chemo and neutropenic. It's a big NO NO. Since Julia is always neutropenic and we have been living like hermits I decided to break the rules. She had been asking me everyday for the last month to take her there. She had the most wonderful time and it was so good to see her in a normal environment being a normal kid (it was good for all of us). The funny thing is while we were in line for ice cream there was an older lady behind us who also had a PICC line and was obviously receiving chemo. Julia turned to her, pointed at her arm and said "yeah, I have one of those". It was the funniest moment and Julia felt really good to see someone else like her. The older women laughed and they shared a moment. It was priceless. Going to Wonderland seems like such a simple thing, and years ago I would have thought so, but for us it's not. I can't wait for the day to come where we can begin enjoying the simple things in life again.

Julia will be back at the hospital next week for blood work and clinic. She is scheduled for her repeat CT scan on August 14th. If all is well with the scan she will begin her 5th cycle on August 18th. I will keep you all posted on the results.

I want to take this opportunity to let you all know how deeply appreciative we are for everyone’s involvement and generosity in the fundraising efforts.

I have to go but want to thank all of you for thinking of us. I will be in touch when I can.

Sincerely,

Nadia

Snowballing Kindness

2009-07-27T11:56:00.001-07:00

This past Saturday the residents of Waterwheel St., Taylor St. and Smithy St. in Markham held a gigantic street sale.

When Mary recieved the flyer in her mailbox she thought it would be a great opportunity to have a bit of a fundraiser for Julia!

She brought a flyer to Carleton Printing, who immediately said they wanted to support Julia by printing any and all things to further the cause. They not only printed the flyers, but printed up four HUGE posters. The community`s generosity began here, and slowly snowballed!

Once the flyers were handed out by a very helpful friend and neighbour Susan, people began calling to add their support to Julias Foundation, every one wanted to help.

Neigbours came to the street sale with donations in hand, and you have NO idea how eternally gratefull we are to all of you!

People donated their items to be sold at the street sale, and a family friend donated food for our BBQ sale! Friends and family came to send good wishes to Julia and her family, and we raised hope and spirits and funds...

It was a HUGE success despite the rain in the afternoon, and everyone is so grateful for everything and anything that was contributed.

Can you feel the love? I can!!!

WOW WOW WOW!!!

2009-07-25T18:43:00.000-07:00

All I can say is WOW WOW WOW!!!

What a generous surprise for Elio and Nadia from their family. At a recent stag for Enzo Elia, Elio's cousin, they raffled off a BBQ to the stag guests in support of Julia.

It is all of these small acts of kindness that help heal and bond ourselves as families and as a community.

We are so thankful for every ones involvement and for all of your support for Julia and her family.

Congratulations Enzo & Natalie on their upcoming wedding!

EVENT THIS SATURDAY

2009-07-21T20:32:00.000-07:00

Please join us this Saturday as friends, family and neighbours support Julia.

GIGANTIC STREET SALE

Waterwheel St., Taylor St. and Smithy St.

Saturday July 25, 2009

6am - 4pm

Link to Map here

Drinks and snacks will also be sold in support of Julia's fight against cancer at
14 Waterwheel St. (Nonno & Nonna's house)

Please feel free to come by!

Julia Update

2009-07-21T17:28:00.001-07:00

Hello Everyone,

Just wanted to give you a quick update on Julia. Julia's heart biopsy was good. It showed an R1 rejection which is normal. Doctor's have decided to lower her immunosuppression meds in order to help with the PTLD. We have tried this before and Julia had rejection. We will try again and re-biopsy her in mid September early October.

Julia's counts continue to be dangerously low. Therefore today she received an antibody to help boost her immune system. It was a long day as the infusion was over 4 hours. She continues to receive injections every other day to also help bring her counts up. Then to add to the day, Julia's PICC line was sluggish so we had to give her a medicine (which I like to call Drano), to unplug it (that was another 2 hours). Her hemoglobin was boarder line today, which means she may need a blood transfusion by next week.

Julia will begin her 4th cycle of chemo next Tuesday. She will also have a repeat CT scan the week of August 10th. If all is well, we will continue with the last 2 cycles of her chemo.

Overall Julia is doing better. She continues to put up a fight and cause trouble for all the doctor's and nurses. She has turned me into her own personal nurse since she won't allow anyone to do her vitals but me. She is a strong, stubborn, feisty little girl, and because of this she has already overcome so much.

Thanks again to everyone for all your prayers and support.

Nadia

Great News from Nadia

2009-07-11T08:52:00.000-07:00

Finally, I have good news to report. Julia had her heart biopsy and repeat CT scan on Thursday morning. Everything went well and she recovered very well. On Thursday afternoon Dr. Punnett came to see us and let us know that Julia's CT showed marginal improvement from the last one. Although the lymph nodes were not gone they have decreased slightly in size, and since she is doing well clinically this was enough to put her back on her chemo protocol. Therefore Thursday night Julia received her 3rd cycle of chemo, and as usual handled it like a superstar. Julia continues to be neutropenic and this will remain a challenge for us.

We were finally discharged on Friday afternoon, and let me tell you it is so good to be home. It was starting to feel like the hospital was our home. Julia has to be back at the hospital on Tuesday for blood work and clinic. We will not get the results of her heart biopsy until early next week. She will be followed closely and repeat her scans after cycle 4. For know we are so grateful to be home and have decided to take this journey one day at a time.

I know a lot of you were worried and I apologize for not being in touch, but I want you to know that I am forever grateful for all your support.

Nadia

Quick Update from Nadia

2009-07-06T19:37:00.000-07:00

I am glad to report that Julia is feeling much better. She had a repeat ultrasound today and everything was good. The bowel thickening was gone and the lymph nodes were back to normal size. Since these issues resolved with antibiotics doctors believe they were probably due to infection. As of tonight she will be taken off all the antibiotics she is on and can start eating on her own (with IV nutrition as a top up).

Although we have dodged one bullet we have two more to go. She will undergo a heart biopsy and a repeat CT scan on Thursday. Doctors continue to be very concerned about the lymph nodes in her chest and the spots on her lungs. Unlike the stomach issues they do not believe this is infection related. We were told today that it is very unlikely this is an infection especially because she has no symptoms of a respiratory infection. They are worried it may be progressive disease. I remain optimistic that Julia will once again prove them wrong.

The plan is to have the CT scan Thursday and if it shows improvement we will re start our chemo protocol on Friday, and potentially be home by the weekend (this is what we pray happens). If the CT scan is unchanged or worse we will then have to undergo a lung biopsy. This is a very invasive, scary procedure which will mean Julia will have to go to the Critical Care Unit after biopsy. At this point we have not gotten into details with the doctors about this option. I figure why worry and live with more anxiety until we know the results of the CT scan. Therefore at this point I just pray that the CT scan shows improvement, and we can go on with our current chemo protocol.

The next couple of days will be very long and stressful as we await the results of the CT scan. Living here day in and day out waiting to find out what the future holds is really taking it's toll. Will we get to walk out of here by the end of the week with a happy ending or will our lives be completely shattered? Wasn't heart transplant enough to go through? These are some of the questions I ask myself everyday.

This is all for now and I will try and update you all by the weekend (hopefully from home).

Thanks again for all your love and support.

Nadia

Update from Nadia

2009-06-30T22:06:00.000-07:00

Julia’s fevers finally broke yesterday, and her blood cultures (which check for bacterial infection) continue to be negative. As mentioned in my last update doctors began a fungal workup yesterday to try and figure out what is going on. Although the fevers broke her counts continue to be bottomed out and she remains unwell.

This workup includes an anti fungal antibiotic (yes another one), an ultrasound of her abdomen, and a CT scan of her chest and head. She had her ultrasound this morning and her CT scan this afternoon. Shortly after the ultrasound the fellow came in our room and told us that her ultrasound showed thickening of the bowel walls, probably due to an infection. Therefore, she will have to be NPO (no food), and fed intravenously until the infection improves. She also needs to be put on yet another antibiotic to protect her bowels. We were scared but relieved that this was probably the reason for her being so unwell.

Then our oncologist (Dr. Punnett), came to see us around 5:30 tonight with some very disturbing news. I knew when she walked in the room it wasn’t good. She was teary eyed and very upset. She told us that the CT scan showed fluid in Julia’s lungs and some spots. Unfortunately they don’t know exactly what that means. We are expecting Infectious Diseases tomorrow to determine if the spots in her lungs are bacterial. Then just when we thought it couldn’t get any worse, she told us that the ultrasound showed a significant increase in the size of her lymph nodes in her stomach. She was shocked since we just had a PET/CT scan on June 19th and it was clear. She said she would never have expected to see such changes in 11 days. The real problem is figuring out if it is infection or the disease (PTLD). There is also the possibility that the spots on her lungs could be PTLD. At this point we have stopped our current chemo protocol and once again need to undergo investigation to see if there is progression of the PTLD. We will have a repeat ultrasound on Friday, another PET/CT scan next week, and possibly a biopsy of her gut. If this turns out to be PTLD we will have to start much more aggressive chemo. On top of all this we have been having difficulty maintaining Julia’s immunosuppressant levels for her heart. Therefore we will undergo a heart biopsy to be sure there is no rejection.

I can not begin to describe how difficult today has been. We feel like we have taken 10 steps back. We are in complete shock, disbelief, numb, and extremely terrified. The thought of having to spend another 3, 4, 5, or more weeks here, and being away from Anthony and Emily again is killing me. Being here day in and day out with constant IV medications being hooked up, doctors in and out, and Julia looking so sad is becoming too much for me to handle.

I apologize for communicating this information via the blog but I can not possibly discuss all the details with each of you. Despite the disappointing news we have to remain optimistic that these are all symptoms of infection, and we ask that you do the same. We also ask that you all say a prayer for Julia as she undergoes this next week of testing.

Thanks again for your ongoing support and I hope and pray that my next update will be good news.

Sincerely,

Nadia

2009-06-27T20:54:00.000-07:00

Hello Everyone,

I wish I had better news to share but I don't. Things have gone from good to bad. Julia is still battling high fevers, and absolutely no blood counts, and doctors don't know why. Despite daily injections to boost her counts we have seen no improvement yet, and the scary thing is no one can explain it. Julia is clinically worse since Thursday, not better.

Julia had a very bad and very scary day. Her fevers reached 40.3, she started vomiting, her blood pressure dropped, and she had blood in her urine. When her blood pressure dropped doctors ordered a bolus (large amount of fluids), to be pushed in her line immediately. Instead of her blood pressure improving after the bolus it got worse. We gave her a second bolus and her blood pressure improved. Although it is not where it should be it's stable right now. Doctor's also added some heavy duty antibiotics to try and control what they think is a bacterial infection. Although the doctors believe she has a bacterial infection they have not been able to find one. If she still has fevers tomorrow they will begin a work up to see if she has a fungal infection. Julia is now on 3 heavy duty antibiotics almost around the clock and hopefully we will see some improvement tomorrow. Julia was suppose to begin her 3rd cycle of chemo on Tuesday but due to these recent events it is likely she will not be able to begin her chemo next week (which is a whole other problem).

I am sorry I have not answered or returned any calls but I can not put into words the challenges and complications we faced today. I am extremely nervous and scared right now, and in no condition emotional to talk. I hope you all understand.

I will be in touch when things improve. I hope and pray tomorrow is a better day.

Thanks,
Nadia

Julia's Update

2009-06-26T06:17:00.000-07:00

Hi Everyone,

I am sad to report that Julia was admitted to the Hospital for Sick Children on Thursday morning with high fevers, lethargy, and absolutely no counts. Julia's blood counts are 0, which means no immunity. Her hemoglobin is also boarder line and she will probably require a blood transfusion. She has been started on heavy duty antibiotics, and daily injections to boost her counts quickly. Doctors fear that Julia has a very serious infection. When I last spoke to Nadia they were unable to get the fevers under control (even with Tylenol).

I will keep everyone posted as I know more.

I ask that you all say a prayer for Julia and her family as they are once again faced with another admission.

Thank You

Mary

Update from Nadia

2009-06-18T18:42:00.000-07:00

June 18th, 2009

Julia finished her last chemo of cycle 2 today. There are only 4 more cycles to go. I am extremely happy to report that the doctors are very pleased with Julia clinically. She is eating well, and has even gained weight. Her blood work on Tuesday was almost perfect. I can not remember the last time it was that good (over a year). She is handling her chemo very well, despite being told that she won’t be well and her blood counts would bottom out on day 10-14 after her last chemo. For those of you who now Julia she never follows the book. She seems to do well when doctors don’t expect her to, and not well when she should. As we move through the cycles the chemo will have a harder impact on her.

Tomorrow is a big day. She is having a PET scan to determine how well the treatment is working. We need a clear scan tomorrow in order to move forward. Julia will receive a nuclear medicine 1 hour prior to the scan, she will then go under a general anesthetic and have her scan. The scan takes about 1 – 1.5 hours. After the scan she will go to recovery. The scan will show if there are any areas of over activity, which would be suspicious for cancer cells. We were told to page the doctor after the scan for immediate results, so as you can imagine I’m a little nervous. I ask that you all say a prayer for tomorrows scan.

I would like to apologize for not keeping in touch or returning phone calls sometimes, but this has been and continues to be a very challenging time for us. I have good days and bad, and quite honestly I need all my energy to focus on Julia. Juggling all the hospital days with Julia and trying to keep a somewhat normal life for Anthony and Emily has been exhausting.

It’s been a long day, and it will be an even longer day tomorrow so this is all for now. I do want to thank everyone for your support and please know that I am extremely grateful.

Sincerely,

Nadia

A wonderful gift

2009-06-11T09:17:00.000-07:00

I received the following message from some one who saw our Facebook group Let's Help Julia:

Hi,

I saw your post on Facebook about your wee relation Julia. What a journey! 3 of my 5 kids are under the long term care at Sick Kids with a rare metabolic disorder. Anyway, the reason for my letter is to offer a gift of photography for her family. Whenever it suites. My gift is one of a celebration of life in photographs..to give hope and life no matter what part of the journey we find ourselves in. I am available to come to the hospital and have worked with Sick Kids in the past in situations like these.
If this is something you are not interested in, I fully understand but wanted to offer it anyways:)

Robynn Munnings

www.robynnmunnings.com

What resulted was truly spectacular memories for Julia and her family. What Robynn has done for this family is truly selfless, and they are extremely grateful.

THANK YOU ROBYNN!!!

Ida

*you can click on any of the pictures to enlarge them

Julia Update from Nadia

2009-06-06T22:35:00.000-07:00

Hello Everyone,

Sorry it’s taken me so long to update you on Julia’s week, but it was a very crazy and exhausting week.

The back to back chemo days were intense, and very long. Julia was at the hospital Tuesday for clinic, blood tests, and an IV treatment. It was a 10 hour day, but she did very well. Doctors were happy with her clinically, but unfortunately, Julia is severely neutropenic (NO IMMUNITY) right now. I know a lot of people have asked about coming to see her but we will not be having visitors until her blood counts rise.

Julia received her first chemo of Cycle 2 on Thursday. It took 6 hours, and she handled it well. Friday’s chemo was an 8 hour infusion, and it made her a little sick. Doctors warned us that she would get sick that night, but I didn’t believe it because she looked so good after her chemo. But sure enough the minute we walked in the house she vomited everywhere. She had a rough night, but is much better today. Although, we were told yesterday that this chemo will have its full effect between day 10 and 14, so we will have to wait and see.

Since her hair is continuing to slowly fall out, we decided to give her a little haircut. She has given herself a new nickname of “shaggy” (she thinks it’s hilarious).

That is all for now except thank you all for your good wishes and prayers. I am so thankful to have so many good friends/family.

Nadia

Julia Update

2009-06-02T18:40:00.000-07:00

Hi Everyone,

I just wanted to let everyone know that Julia is home from Sick Kids from her clinic, blood tests and treatment today. Julia did very well and she will be returning to Sick Kids on Thursday and Friday for chemo. We will keep you posted on how Julia is doing.

Thank you again for all your love and support.

Thank you,

Mary