Tuesday, April 8, 2014

Radiology Consultation

Jack is doing super! It's great seeing his energy levels picking up, appetite increasing and all around starting to feel better. The chemo really does a number on tastebuds and how food tastes and its texture. 

On Sunday, Jack and Chase walked up to Campbell school to play some soccer. The school is about 12 blocks away and Tibor and I were both a little leery letting him walk that far. After an offer to  drive them, Jack declared no way, he was walking and that was that. So with a phone in hand, snacks, and a water bottle, the boys walked to the school and played soccer for an hour. 
The boys played and Tibor and I did some yard work, it was a nice afternoon. Jack came home, ate four of his fish sticks, two of Chase's and asked for more. So yeah, we let him play outside as much as he wants to. 

Today we meet with the radiologist at the new Cancer Center out at Village Point Plaza in Omaha. (It's part of UNMC.) It was a long day of Q&A, CT scans, labs and a simulation of how radiation will go. I joke with Tibor that most times we leave a consultation more confused then before. 
Everything regarding a treatment plans end with an asterisk. So, here's what we think we know. (This info is based on the consultation today and before the doctor had a chance to read the CT scans.) 
Jack will have 20 rounds of radiation starting on the 14th, next Monday. We'll go to Omaha every day, Monday through Friday. The radiation therapy is pretty specific to the primary location of the first tumor (around the adrenal gland in abdomen, this is where neuroblastoma usually starts) and depending on how the CT scan reads, additional radiation treatment to the secondary location. (I'm not exactly sure where at in the abdomen area and how long that treatment lasts) 

The side effects of course range from short term to long term and are pages long. Treatment shouldn't hurt and takes about 15-20 minutes. Most of that time is getting him prepped and all lined up with the machine. They even made a mold for his body to lay in and he has stickers on is tummy that will help line up him with the machine.
I'll take pics of him on Monday before they start, the machine is gigantic! 
I'm sure by next Monday when the doctor has read the CT scan and has the treatment plan all ready, we'll have a more concrete plan for treatment. We're just going with the flow for now. 

Today we're grateful for:
- great Spring weather, and playing with boys outside. 
- Ben and Jerry's ice cream. OMG, I thought Eddie's ice cream was fantastic. We're an ice-cream family that goes nuts for great ice cream.
- moving forward in treatment and Jack being super brave for starting something new.
- Jack's blood labs being good. This not only reinforces his positive recovery from the transplant, but on the more visible side. He only needs to take three pill in the morning (it was 6, weekends was 8) and none at night! This makes a 25 minute night time routine into a five minute one. That is huge! (Yes, it would take him 25 minutes to take six pills.) (To that, add line flushes, going to bathroom, having a snack (of course), brushing teeth, reading books, watching a bit of iPad, feeding the fish, and you can understand how it takes us 2 hours to get him to bed.) (There was also neupogen shots for a ten days after each chemo treatment, which required icing the leg and mustering up courage, but thankfully we haven't had to do those for a while.)

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