Busy Week

Another hectic weekend. On Saturday night Elliot developed a fever of 100.8 axillary, so after speaking with his doctor we were admitted to the hospital.

Fortunately with this admission (and every admission since the first one) we did not have to go through the ER, but went directly up to the Peds Hem/Onc floor. They did the normal workup of drawing blood and starting him on IV antibiotics. On Sunday his hemoglobin was low (7.3), so he got a blood transfusion. He still had a fever and his IgG (immunoglobin) level was also low, so the doctor ordered IVIG for him. This is essentially a collection of antibodies to help him fight infection. It is given IV over a few hours. He acted agitated for the first part of the infusion, and about an hour and half into it started to have a reaction to it. He was shivering, his skin was turning blotchy, and he spiked a fever of 102. They quickly stopped it and gave him a dose of Benadryl and solumedrol (steroid) to counter the reaction. He was feeling pretty miserable on Sunday, but by Monday he was feeling better. They kept us until Tuesday to be sure everything was okay. His blood culture never grew anything, and he hadn’t had a fever since Sunday. On another good note, Elliot is starting to take some steps with assistance. He doesn’t want to do it on his own, but with help he will walk about 10-15 feet. Hopefully, he will start walking soon because the doctor did mention physical therapy if things don’t pick up with his walking.

We were supposed to have his LP (lumbar puncture) on Tuesday with a dose of chemo, but it was postponed until Thursday morning to give him a break and let his body recover. He had it yesterday and everything went well. The most difficult part is not letting him eat or drink anything before the procedure (which didn’t start until 10:30). He kept saying "I'm hungy."

We had been planning on Melissa taking our 4 ½ year old daughter, Addie, to Myrtle Beach (a trip which was originally planned for our family before Elliot was diagnosed with leukemia) with her sister and family and her parents the next day (Sunday 5/29). We had waited until recently to tell Addie about it just in case something came up, which of course it did! But, it all worked out thanks to some extra babysitting help from Dave’s brother and wife. Melissa took Addie to Myrtle Beach Sunday night and spent a couple days getting her settled and visiting her family, and now Addie is having a great time spending the rest of the week with her cousins, aunt & uncle, and grandparents. We are so thankful that she got to go and have some fun! We really want her life to be as “normal” as possible through all this. It makes us sad that we didn’t get to have our whole “family” part of the trip and especially to see Elliot missing out on so much but are glad that Addie got to go. She really has taken everything in stride and has been great with Elliot. She loves her brother very much. She knows he has cancer, is very sick, and will be sick for a long time, but obviously does not grasp the seriousness of it all.