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