Mollie seemed a little bit better today. Her counts are about the same as yesterday (negligible ANC) and her rash is still present. It seems like it is moving downward- not so bad on her face today, but worse on her tummy and back.
They decided to give her IVIG because her immunoglobulin levels are low. IVIG is pooled IgG that has been extracted from the plasma of over 1000 blood donors (and is very, very expensive- Mollie's dose probably cost more than $6000). Mollie has had it before (when she had a suspected staph infection in Dec. 2008) and she had a very severe reaction (dropping oxygen sats and increased blood pressure). It was extremely scary (as in, yelling for the doctors because Mollie was turning blue), so Matt and I were really nervous about today. But it all went well. Mollie was premedicated with Benadryl, Tylenol, and Solu-Medrol, and her nurse, Kaitlin, was very cautious with the pump rate and diligent about checking for signs of an allergic reaction. She developed a slight fever during the second step, but it resolved quickly without any additional meds. She remained afebrile all day and the steroid (Solu-Medrol) seemed to help with some of the itching and redness of the rash.
Mollie has little bouts of feeling well, but the meds and just being in the hospital are getting her down. She is not eating much. She reminds me of an injured animal because she is maintaining this hunched over posture to protect her port. She doesn't want anyone to come near it and she didn't relax at all today. She is doing a great job complying with the nurses (who are great) and telling us how she feels. She just wants to go home and I don't blame her!
Today we were lucky that Mollie's kindergarten teacher from last year (Mrs. S) watched Lucy all day!! Lucy really needed some one on one attention and I know she had a great time. Thank you Mrs. S! Also, Mollie's new teacher, Ms. C came to visit her in the hospital and brought a card signed by the whole class! Mollie was pretty shy when she was there, but she was looking forward to her visit all day and really enjoyed looking at the card after she left. Thanks Ms. C!
The last bit of news, and the best, is that Mollie's wish was approved. We are going to Disneyworld! You may remember she wished for a playhouse a long time ago. When we found out we were moving, we asked them to put a hold on that wish because we were not sure if that would be the best idea. After talking things over with Mollie, explaining that a fancy playhouse just won't fit in our yard right now, and looking at pictures of Orlando, Mollie got pretty excited about Disneyworld and the Give Kids the World resort. We are going in December so it will be all decorated for Christmas!
Thanks for all the comments- it helps us get through, it really does. Hearing from other cancer parents who know how much this sucks, and our other friends and family cheering us on. When I leave the hospital without Mollie and feeling down, I think about the families who just received a devastating diagnosis today, or worse yet, lost their son or daughter today, and I am thankful for what we have. Tomorrow is the first day of National Childhood Cancer Awareness Month. I urge you to spread the word and make a donation to an organization that specifically supports pediatric cancer research or treatment, such as the ones listed in the sidebar.