Happy Holidays

Wanted to let you all know that Julia is home for Christmas and is feeling well despite the ups and downs. She started an oral like chemo this week and we were all worried how it would effect her but so far she is holding her own. Yesterday we had a surprise visit from some of the guys from Hockey with Heart. They came to give the kids some gifts and wish them a Happy Holidays. The kids were so happy and grateful for the visit. We thank them so much for thinking of us and their generosity. We are off to NY on Jan 6th for another cell infusion. I will keep you all posted on how it goes. We want to take this opportunity to thank everyone who has supported us through this difficult year. Your thoughts, prayers, and financial support has helped us more than words can describe. We wish you all a healthy, happy holidays and a great start to the new year. Sincerely, The Morreale Family

Long Overdue Update

Dear Family and Friends I deeply apologize for not updating the blog sooner but the last few months have been very crazy. We returned from our final infusion in NY on September 11th and Julia was admitted to Sick Kids on September 12th for fevers. She has spent most of her time in hospital up to 10 days ago. She was in hospital most of September and October with unexplained fevers and once on antibiotics the fever would go away. Once we would discontinue antibiotics the fever would come back. Until the end of October when things got very bad very quickly. She had high fevers, severe headaches, and vomiting. As they increased and changed to stronger antibiotics Julia just got sicker. Finally she went to the OR for a bone marrow biopsy and lumbar puncture. A couple hours later doctors showed up at our door with the results......Julia's bone marrow and spinal fluid (central nervous system) was full of the EBV virus. She had EBV induced meningitis. She immediatly started cytotoxic drugs that day to control the infection which was now in her brain. She started experiencing extreme rage and halusinations. She was immediatley brought to MRI. Her MRI was fine and we treated her with drugs to keep her calm and sane. After a few days on the cytotoxic drugs things slowly started to turn around. Through this all we were in talks with NY trying to figure out if this was an adverse effect to the cells she has been getting. Unfortunately, there were no clear answers. Sick Kids and NY ran multiple tests on Julia (and even me) to see if my dna was in Julia and she was rejecting my cells. Unfortunately with clinical trials there really are no clear answers. NY had never seen this happen but we all agreed that Julia could be the first. After putting all the tests together and her clinical improvment it was determined that is unlikely due to cells but once again no one could be sure. Also no one could explain why this happened and how the EBV got into her central nervous sysem and bone marrow. We spent a few days waiting to find out if the cells they were seeing were the cancer (the wait was torture), it was determined that the cells had not yet turned into PTLD and were only at the EBV disease stage. Julia came home 10 days ago and continues to get her cytotoxic drugs at home with home care. She is feeling much better and almost back to herself. NY would like us back there for more treatment although our doctor at Sick Kids isn't quite comfortable. It was decided that Julia was not stable enough to travel to NY at this time. I just found out yesterday that Julia will return to NY for more cells in the beginning of January. Although if she gets sick again after cells our doctor will pull the plug on cell therapy. Another year that Julia has been unable to go to school. She is starting home school today and is excited about that. I feel so bad for her that she has spent the last 4 years missing out on everything a 7 year old should experience. She is extremely frustrated staying home and all the meds she is hooked up to throughtout the day and night. She has 2 more weeks of meds and then hopefully she can be free of them for Christmas. We continue to go to the hosptial weekly for clinic and yesterday all her bloodwork was stable. Counts are a little low but expected on this chemo like drug she is getting. Anthony and Emily have had a hard few months as they have been passed around a lot the last few months. I have not been here for them at all this year. I missed Emily's first day of school and have spent much of the school year in the hospital with Julia. I can only pray that we will catch a break soon and be able to live somewhat of a "normal" life soon. I look forward to spending the Christmas break with all my kids. As much as I have tryed to remain strong throughtout the years this last admission had me totally scared, overwhelmed and defeated. We have lost many kids to this nasty disease called cancer in the last few months and this has made the last few months even harder. I am extremely tired, frustrated, and so worried about what the future holds. I apologize to all who have tried to contact me the last few months but I really just needed some time alone and was really in no mood to talk. I am re grouping now and as always ready to take on the next challenge head on. I am so grateful that Julia is so tough. No matter how down she is or how bad things get she is a fighter. A doctor yesterday told her she had 9 lives. She is one tough kid. Thanks again to all of you for your continued support. We apprecaited it more than words can say. Sincerely, Nadia

Back to NYC........

Hi Everyone, I apologize for not updating sooner as many of you have been wondering whats going on. We have finally had the opportunity to discuss biopsy results and future plans with both NY and Toronto and everyone agrees that Julia is un unchartered territories and there are no "right" or "wrong" answers. There were many opinions going back and forth and the decision lied very heavily with us (which has made things very difficult). On Thursday it was decided that we will be heading back to NY for another cycle of cell therapy and then will move directly to a maintenence schedule. Therefore we are leaving on Monday for 3 weeks of cell therapy and then Julia will return every 8 weeks for 1 infusion. We will do this for 1 year if things remain well. We have also decided to attempt lowering Julia's immunosuppression in the hopes of helping her immune system. We have reduced her meds and will watch things closely (since history has shown that Julia rejects her heart), and biopsy her in early to mid October. Julia has remained well and enjoyed her summer. Unfortunately cell therapy is starting at the same time as school so once again she will be missing a little bit of school. At this point both Elio and I are emotionally exhausted with the ups and downs and getting really tired of hospital appointments, living in fear, and the unknown. I am having a hard time going back to NY and feel really nervous this time. Its so hard to know if we are making the right decision given that she's been well. The only thing that I was sure of is if I decided not to try more treatment right now and than Julia got sick I could not live with myself knowing that she is not in remission. The weight of Julia's future lying in my hands has been overwhelming. I'm so use to doctors telling us what needs to be done (and even though not always liking it), and we do it. This time no one knows what to do and I've had to make the decisions. Thankfully we have an unbelievably supportive oncologist who is always there for us. I will keep you all posted on how treatment in NY goes but for now please pray that Julia gets through this treatment with no surprises. Thanks again for all the support. Nadia

Results are in.........

Hi Everyone, The biopsy results are in and Julia is not in remission. The biopsy confirms that the PTLD is still there. Although, unlike other times this biopsy is reporting "early, mild PTLD". This is not surprising but very disappointing. It took some time for Elio and I to get over the anger and disappointment but we are doing the best we can. Pathology slides have been sent to NY and we are waiting for NY to review them and give us some direction. These things take forever and it is so frustrating knowing Julia still has the cancer and just sitting here doing nothing about it right now. Looks like we will end up back in NY for more cell therapy but NY would like to try and change donors. The problem is if we change donors the cells aren't quite ready yet. I wanted to be in NY this week for cells to buy us some time but that didn't happen. At this point I'm thinking the 2nd week of August if that's what the doctors decide is the best treatment. Thankfully Julia is feeling well, her blood work last week was perfect (which made us feel so much better), but this weeks was down again. Julia's oncologist is away this week and we will not see her till next week. Hopefully we will have more answers from her and NY by then. For now we are living day by day and taking in the good each day brings. I will keep you all posted on the treatment plan when we have one. In the meantime please pray that Julia remains well. Thanks Nadia

Julia is in the OR.........

Hi Everyone, I did not expect to be writing to you all so soon but what a crazy day we had yesterday. We came to clinic as planned and Julia's blood work was a little concerning. That coupled with her clinical appearance lead to chaos. Our oncologist asked us to wait as she paged both ENT and Infectious Disease with the hope of organizing a biopsy time and some direction from ID. She came back and told us to go straight to ENT as they were going to bring her to the OR a s an emergency add on. So we ran down there only to find out that Julia would go to the OR at night, but that didn't work well for oncology as they wanted to do a bone marrow biopsy at the same time but the lab would be closed and could not recieve the samples. So after a lot of back and forth (all while keeping Julia NPO no food) it was decided they would do the procedure Friday. So we were admitted to day hospital in order to give Julia hydration for 3 hours. At around 5:00pm the doc came to our room and said be ready we will bring Julia to the OR tomorrow morning at 8am. So we arrived at the hospital this morning at 6am,and at 8am Julia was brought into the OR for removal and biopsy of 2 lymph nodes in her neck, a sinus wash, a biopsy of her adenoids, tubes put in her ears, and a bone marrow aspirate and biopsy. Poor kid is an understatement. She was so scared and cried so much, begging us not to let them take her. It was so bad that the anesthetist had to drug her in the hallway to calm her down. The waiting (no matter how many times we go through this), is brutal. Julia has just been brought to recovery as i am writing this, but is still fast asleep. There is blood everywhere coming from her nose, and she has a huge cut on her neck all stitched up, and if that's not enough another big dressing on her back from the bone marrow biopsy. When is enough enough? This poor kid can never catch a break and really not sure how much more of this emotionl roller coaster I can handle. Once Julia is awake she will be moved to the ward and be watched closely for the next 24 hrs. Biopsy results will take 8-10 days......more waiting....story of my life. I have asked our doctor here to contact NY and set up another cell infusion to buy us some time. Julia's counts are getting bad and I feel strongly that she needs a boost to buy us some time till we figure out what is going on. I hope to go to NY in the next 2 weeks for cells. The last 2 days have been an emotional nightmare and I am not answering any calls....sorry.....I just can't right now. I will be in touch and if anyone really needs something please call Elio. Once again I ask you all to pray for my precious baby girl as she AGAIN is facing more challenges. Thank you all for your on going support. Sincerely, Nadia

Scan Results

Hi Everyone, Julia's scan did not happen on June 12th as planned because of course she got sick again. She developed high fevers and an ear infection so doctors did not want to do the scan when she was not at her best. Therefore scan was rescheduled for June 26th. Results are in and the news, although not horrible, not great either. The scan is still showing enlarged nodes in her neck that are lighting on the PET scan. She has numerous other nodes in her armpits, around her liver, and her abdomen but these have minimal uptake on PET. The major concern is her neck. On a good note that previosly seen lung findings are completely gone. Our doctor has spoken to NY and at this time we really can't say the treatment worked completely but it does show some positives. The next step is Julia will have a biopsy of the nodes in her neck in the next couple weeks and we will wait for those results. NY would like to change donor cells, or even try and use Julia's own cells but those cells are not quite ready. We are running out of options and if we don't do more cell therapy the only other 2 options doctors have given us are; using a maintenance antibody which would leave Julia open to infection as the antibody wipes out her good and bad cells, or a maintenance chemo protocol where she would take oral chemo everyday but again this opens her upto neutropenia and risk of serious infectiion. Both of these options are not cure they are only maintenance to keep things at bay and my fear is that they will only work so long until the disease takes over. For now we will wait for biopsy and re group with doctors after results are in. Julia was admitted over the weekend for high fevers again and her counts are already on there way down. She is borderline needing a blood transfusion. As you can imagine this has been a long journey and despite doing everything and anything in our power to beat this deadly disease we feel like we are loosing the battle. I am a nervous wreck, completely disappointed, scared, and most of all feel like the walls are closing in on me. For those of you who know me well I tend to shut down and distance myself and I apologize for that. But please understand that I mean no disrespect to anyone and always appreciate the support but need to step away to be able to cry, be angry, feel sad, etc. But like always I will re gain my strength and be back soon to continue fighting. I thank you all for understanding and giving me some space. I will update you all when I have more information. Nadia

Long Overdue Update

Hi Everyone, I apologize for the long delay in updating the blog. I know many of you have been wondering what is going on. The last month and a half has been very crazy. As I mentioned in my last post Julia was admitted to Sick Kids and stayed there until the middle of May. It was a very tough admission as things kept going wrong and Julia was getting sicker as the days went by. As I told you she had a very serious blood infection which caused her blood counts to go crazy and starting requiring blood transfusions. An ultrasound revealed that she had developed a blood clot in her arm where her line was so we had to pull her PICC line. After that she developed pnemonia. A routine echo of her heart than revealed that all 4 valves of her heart were leaking. She was than sent to the OR for a heart biopsy and angio to see if this was being caused by rejection. Thankfully there were no signs of rejection but also no answers as to why her valves were leaking. After that she had her PET/CT to see if the treatment in NY worked. The results are heartbreaking......the scan showed new and bigger lymphnodes which we did not expect. Unfortunately based on this scan doctors could not declare her in remission. After many talks with doctors in NY it was determined that since Julia had so many other issues going on we would re scan her in 6 weeks (scan is coming up June 12th). At this point we have no treatment plan and the decision about going back to NY won't be made until after this scan. After all settled down Julia went back to the OR and had a port inserted in her chest for access. The first week or so was really tough but now she loves having her arms free of lines and being able to swim and take a shower freely. Julia is now home and feeling better. She has even starting going to school which she is so happy about. For now doctors are watching her very closely and we are in clinic weekly monitoring everything. Again I apologize for not updating earlier but the long admission and the heartbreaking scan results had me devastated and I really didn't want to talk about it with anyone. Last week, a very special girl named Sophia from St Mary's in Nobleton came to Julia's school to meet her. This grade 4 student heard about Julia's story and was determined to help. So with the help of her teachers she held a fundraiser at her school for Julia and raised over $700 for Julia. The meeting between the girls was unbelievable. Sophia presented Julia with cards, pictures, and even a video she made for her. It was absolutely touching. At the young age of 10 this little girl was so concerned and cared so much aboout Julia and her story. I thank her and St Mary's for all their support. As we are in watch and wait mode until the scan I ask you all to pray for Julia and better scan results next week. I will update you all with the scan results and Julia's next steps on this long and hard journey. As always, I thank each and every one of you for your continued support. Nadia

Julia Admitted to Sick Kids

Hi Everyone, Julia has been admitted to Sick Kids for high fevers and generally unwell. This morning it was confirmed (through blood cultures), that Julia has a blood infection called Gram Positive Cocci. I do not know all the details yet but I do know that this requires 2 weeks IV antibiotics and we may need to pull her PICC line. We returned from NYC on Thursday and Julia has completed cycle 4 of treatment. Now we wait for scans and re assess our NY plan based on the results. Julias counts are crazy today. The infection is eating up her cells. Her platelets and hemoglobin are way down and if this continues she will need both a platelet and blood transfusion. My cousin is getting married this weekend in Montreal. We were all looking forwrd to this as our whole extended family will be together. Now it looks like we will not be able to attend unless I can work miracles and do some good negotiating with the docs......unlikely. Today was also scheduled to be Julias first day of school....we really can not catch a break. It is horrible to be back in here as an in patient, and after all the back and forth to NY we all thought it was finally time for some sort of normalcy. Did not think we would have to be back living in here. I will keep you all posted as I know more. Thanks Nadia

Update

Hi Everyone,

I want to start by apologizing for the long delay in updating you all, I needed to step away from blogging for a while. I know many of you have been asking what's going on....I'm sorry.

On March 11th a very special boy named Adam lost his long battle against cancer. This boy was very near and dear to my heart and this was a very difficult loss for me to deal with. Adam was a hero, a fighter, a true champion. He once wrote "if you don't fight the fights you may not win, how can you call yourself a champion". Pretty deep for a 17 year old boy. I will miss him dearly and think about him everyday. My thoughts and prayers go out to his family as they deal with the biggest loss a parent can be dealt with. Adam was an amazing kid with determination, kindness, and knowledge beyond his years. He was an inspiration to all and he fought hard and long right till the very end. Adam you are a champion.

Julia's scan after cycle 2 was not as good as we all expected. We were very surprised and of course very devastated and confused. The PET/CT showed a new lymph node in her stomach. Doctors discussed the results and because Julia has been clinically well they decided to continue on with the trial and repeat the scans after the 4th cycle (approx 2nd week in May). Therefore Julia has completed cycle 3 and just begun cycle 4 on Wednesday. She had a rough March with repeated infections but as always held her own. Overall, she is feeling good.

The back and forth to New York is taking it's toll and the uncertainty of the future is driving me crazy. Two of the kids at the Ronald McDonald house have relapsed in the last couple of weeks and they were doing so well and looked so good. This disease is so cruel and I'm realizing that there's just no guessing what it will do or if and when it will return. As parents we just want to be reassured that it will all be ok but unfortunately as I've seen first hand the last couple months this just isn't possible. For now I am taking things day by day and remain grateful that Julia is feeling good. I am trying to live for today and not worry about tomorrow. I do know that I have an incredibly strong, determined little girl who has beaten the odds already.

I thank you all for your continued support and ask that you keep Julia in your prayers always.

I will keep you posted on how Julia does in cycle 4.

Nadia

Back from NYC

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

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

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