More bad news from NY

Julia has been admitted to hospital in NY. Her blood cultures from yesterday were positive. We are still waiting for exact infection but we know she has an infection in her blood. Cells have obviously been cancelled for tomorrow until we clear up the infection. At this point I don't know how long we will be in hospital but I do know they have her on heavy duty antibiotics. I feel so lost here in NY. Will keep you all updated as I know more. Nadia

More drama.......even in NYC

Hi Everyone, On Sunday Julia started complaining that her ear was hurting. Yesterday it started draining thick yellowish fluid. We arrived at Sloan Kettering this morning for cells and after blood work, and vitals the doctor decided to cancel cells for today and postpone them till tomorrow. She wanted Julia to get at least 1 day of antibiotics just to be safe. They also did some viral and bacterial swabs to rule out anything else. Well, about half an hour ago I got a call from our nurse at Sloan.......Julia's nasal swab is positive for RSV (a very serious, potentially life threatening respiratory virus). For those of you who recall this is the virus that was believed to have attacked her heart when she was 6 months old. She will be going into hospital and getting an anti viral infusion to boost her immune system in order to help her fight this virus. Obviously, cells have been postponed till Friday (depending on how she is doing). Which means next weeks cells have also been pushed back. They have asked me to cancel my flight home until further notice. So looks like we will not be returning on Feb 5th as planned. As of right now Julia is feeling fine......now I'm a nervous wreck just waiting for the ball to drop. Sorry for the short update but I'm a nervous wreck and full of worry right now. I will update you as I know more....I promise Nadia

Update from NY

Hi Everyone, Sorry for the delay in updating you all but the blog was down and I could not post. Julia's LP she had showed that once again she has EBV in her central nervous system. No one (Toronto or NY) could understand why this was happening. The 2 options were to start cytotoxic drugs ASAP or get to NY for cells. Our oncologist (who is the best doctor ever), decided to give Julia the benefit of the doubt and repeat the LP one week later. Her repeat LP still showed a high white count (meaning something was still going on), but it had significantly reduced. So the decision was made to hold off on more chemo drugs and go to NY. We needed to wait 7 days before we could fly so we departed for NY on Monday Jan 21st (my moms birthday - this is 2 years in a row my mom spends her birthday here). Julia got her 1st infusion today and will get another next week and the week after. So far so good......Julia feels good and is back to herself. She spent the whole day at Sloan Kettering doing blood work, exams, cell infusion, and every hour vitals for 6 hours and she was awesome. NY is very puzzled by Julia's case. They have not seen cells last as long as Julia's are lasting. They also don't understand why she gets so sick and how she can pull through it by herself. Her nurse practitioner called her "one tough cookie". There is a major break out of the flu in NY and the Ronald McDonald house is under shutdown to the public. I'm a little nervous about this and hope Julia remains well while we are here. Today NY took some of my DNA and Julia's and will be running some high tech testing to see if my cells are in her central nervous system.....pretty cool. They expect to have these results next week. Julia's doctor here in NY is very anxious to get Julia onto maintenance, so after this cycle the plan is to move to 1 infusion every 8 weeks. On a different note I hear its super cold in Toronto so being here feels like fall! Please all keep Julia in your prayers for a successful and uneventful cycle. We'll see you when we are back and I will keep updating you all on how things are going. Nadia

Julia admitted to Sick Kids -NY treatment cancelled

Julia was admited to Sick Kids today for fevers. She is also having really bad headaches again. The fear is that she could have another infection in her central nervous system. She had a CT scan this afternoon and is scheduled to go to the OR tomorrow for a lumbar puncture. All this 24 hours before leaving for NY. Obviously we have had to cancel our trip for tomorrow. I guess better this happened today at home than tomorrow in NY. Well 2013 is proving to start out just like all the other years. I will keep you all posted on what's going on. Please keep Julia in your prayers. Nadia

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