Wednesday, August 19, 2009

Update from Nadia

Dear Friends and Family,

Julia had her CT scan on Friday despite the big mistake I made. A routine for us when going to the hospital is that Julia drinks her milk in the car on the way to the hospital. So since I was at the hospital on Thursday and did this on the way down, on Friday we got in the car and as always - I gave her milk. As soon as she said she was done I realized I had just made the biggest mistake ever. She was NPO (no food or drink), for her CT scan since she had to be sedated. We got to the hospital and they wouldn't take her. I was devastated. I have never forgotten in 3.5 years that she's been having sedated procedures. Things are really getting to me and I am starting to lose my mind. There's just too much to remember; meds, appointments, chemo, transplant procedures, and so on. After begging the anesthesiologist he agreed to take her if we waited the 6 hours in which she would be clear from food or drink, so we did. Let me tell you it was a long day.

At around 6:00 that night Dr. Punnett called my cell phone with results. Overall she was pleased with the results. The lymph nodes in her chest, abdomen, and axilla have improved. Although they are still there they have gotten smaller in size, which is a good thing. The scan was good enough to go ahead with chemo this week. Therefore yesterday Julia received her 5th cycle of chemo, and she did fantastic. Her counts were surprisingly good, and she even managed to push through a cold on her own for the very first time. Doctors were so happy to see her body fight through this cold without support. If all is well Julia will have her last round of chemo the 1st week of September and then her post chemo CT scan around one month later.

Overall she is doing well and we are beginning to see the light at the end of the tunnel with only 1 more round of chemo remaining. It's been a long and sometimes challenging road and although we only have 1 more round of chemo it's not over yet. Dr. Punnett explained that 6 months following chemo is the most crucial time. This is when most children will relapse. So although I will be glad to finish chemo I will be even happier 6 months from now. But as we've learned in the hospital we need to take these things one day at a time, and right now we are very grateful for how much Julia has accomplished.

Julia will be back at the hospital Tuesday for counts and clinic. If all is well, I actually plan to ask for a 1 week break from the hospital. I don't know if I will get it but I will keep my fingers crossed and just maybe we can have a week without hospital visits.

I want to take this opportunity to apologize to my dearest friends and family for being so distant and unavailable. I don't really know why (since Julia is well), but I am going through a very hard time right now. There's days I just want to be alone and not talk to anyone. I hope you all understand. I think when things are crazy you just do what you have to without thinking, and when there's down time is when it all hits you. I promise I will be in touch when I feel better.

Thanks again,

Sincerely,
Nadia

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