Thursday, January 31, 2013

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

Tuesday, January 29, 2013

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 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

Wednesday, January 23, 2013

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

Saturday, January 5, 2013

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