Monday, June 23, 2014

Weekend Update

Jack had a bit of a tough weekend recovering from his week of Immunotherapy. A combo of fevers, upset tummy and diarrhea Friday night and all day Saturday. On Sunday his symptoms calmed down a bit to just feeling worn out and not so great. His tummy is still bothering him a little and he really has no appetite yet. He's having a lot of blurry vision, which is one of the temporary side affects of the treatment. He can see far away, but everything close up is blurry, which is definitely cramping his iPad watching. 

Today we were in Omaha for a doctor's appointment and labs. Labs look good and Jack is starting to feel a bit better, but still not close to funny and playful Jack. Our doctor said give him a few more days and he should start the climb back up to feeling better. It was a hard weekend, Jack felt terrible and I would almost say worse then coming home from a hard chemo treatment week. He felt so bad, he was crying on the toilet from pain and everything he's been going through. He's been so brave and powering up incredible courage and strength throughout all his treatment, it was hard seeing him breakdown and hurt so bad. We are always telling him how proud of him we are and love him to pieces. We had a lot of cuddle time with him, watching TV and chatting about random things. 

We will start a new medicine tomorrow; Accutane, which is normally used for acne. This medicine is part of Differentiation therapy (which is part of the Immunotherapy) and teaches the neuroblastoma cells to mature again, i.e. to stop growing and turn into mature nerve-like cells that do not grow and divide. In this way, differentiation therapy is used to stop any remaining neuroblastoma cells from growing and causing relapse. Jack will be on this medicine on and off throughout the next six months. 

We will go back in for the next round of treatment July 7th. This next set of treatment is two weeks back to back. We are in patient Monday through Friday, go home for the weekend, and come back the following Monday and stay until Friday. (Ugh!)
He has a surgery Monday the 7th to put in his new central line, and then will be admitted for treatment afterwards. 

Jack is pretty excited that he won't be in the hospital for the 4th of July, he loves fireworks! As soon as his incision site where they removed his central line is healed, (hopefully a few more days) he is ready to hit the swimming pool. We are planning a trip to Grand Island to Island Oasis for a day of swimming like no other and for sure hitting some pools in Lincoln too. 

Today we're thankful for:
- no admit over the weekend for Jack. 
- labs look good, no blood or platelets transfusions needed.
- great job US soccer team, you're still in the games! On a sad note, Bosnia is going home. 

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