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