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