Day 30

Today was a rough day for our little warrior. He was NPO (nothing by mouth) from 6am for his Intrathecal Methotrexate (chemo drug given in the spinal fluid). He wasn't allowed to eat after 6am and its so hard on him as he doesn't understand why I wont feed him. Luckily his injection was earlier than the last time and we got into the operating room around 1030am. He was so upset and not himself today. Normally he has been fussy before this med, but still gives smiles to everyone - today he just cried. I wish I could read his mind, or that he could tell me if he has pain or is feeling ill. Its hard having to guess all the time and giving him Tylenol or Gravol if he doesn't need it. I wonder also if he is having withdrawal from the steroid medication he finished on Saturday or if there is something else going on.

I got to go into the OR room with him until they put him to sleep and then Nate and I hung out in the waiting area for about 45mins. After he woke up they brought me into the recovery room and I got to feed him right away and he settled down. Back in his room he received two more chemo meds (Vincristine, and Asparaginase). Both are harsher meds that he doesn't get everyday so having all three today sucked for him. The doctors also decided to give him IVIG today to help boost his immune system - or give it the kick it needs to restart.

He has 6 more days of the Induction Phase of treatments and then they will do another bone marrow aspirate to see how his body has responded to the chemo. There is talk about us being discharged for a couple days before his next round of chemo starts - just not sure on the plan or dates yet. The bone marrow biopsy day also falls on a Saturday so I want to find out tomorrow during rounds if they will do it a day early or wait until Monday.

I'm hoping he gets a good sleep tonight as he was so tired after today and all the proding they did to him - people just kept coming in the room and he really needs some good rest. Oh yeah - forgot to mention he started feeding himself from food on his tray today! I'm so proud of him.