Tuesday, July 28, 2009

Update from Nadia

Dear Friends and Family,

Julia began her 4th cycle of chemo today and although it was an 11 hour day for her she was an angel. Sadly, for the first time Julia was not feeling very well after chemo today. She was very tired and crying in pain that her legs hurt. She also was very warm and flushed tonight before bed. I felt so helpless as she laid on the floor crying with tears running down her face in pain. It broke my heart. I think the chemo is taking it's toll. Doctors expect that as she receives more chemo her body is becoming weaker and the chemo will have a harder impact each time.

Despite the IV antibody she received last week Julia's counts continue to be nothing. Doctors can not explain why she continues to be neutropenic (no immunity) despite their best efforts to boost her immune system with different medications. This is becoming very frustrating and disappointing, as this continues to be a major problem for us. With no immunity she can easily become very ill at any time. Normally after people get chemo their counts bottom out for 10 - 14 days and then recover, this is not the case for Julia. In fact she should not even be receiving chemo while neutropenic.

On a happy note, I did something yesterday that I should have never done. I took her to Canada's Wonderland and she...............LOVED IT. For those of you who know the rules, Oncology has very strict guidelines on visitors, and being in any public places while on chemo and neutropenic. It's a big NO NO. Since Julia is always neutropenic and we have been living like hermits I decided to break the rules. She had been asking me everyday for the last month to take her there. She had the most wonderful time and it was so good to see her in a normal environment being a normal kid (it was good for all of us). The funny thing is while we were in line for ice cream there was an older lady behind us who also had a PICC line and was obviously receiving chemo. Julia turned to her, pointed at her arm and said "yeah, I have one of those". It was the funniest moment and Julia felt really good to see someone else like her. The older women laughed and they shared a moment. It was priceless. Going to Wonderland seems like such a simple thing, and years ago I would have thought so, but for us it's not. I can't wait for the day to come where we can begin enjoying the simple things in life again.

Julia will be back at the hospital next week for blood work and clinic. She is scheduled for her repeat CT scan on August 14th. If all is well with the scan she will begin her 5th cycle on August 18th. I will keep you all posted on the results.

I want to take this opportunity to let you all know how deeply appreciative we are for everyone’s involvement and generosity in the fundraising efforts.

I have to go but want to thank all of you for thinking of us. I will be in touch when I can.



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