Wednesday, May 14, 2014

Plan for Immunotherapy

We meet with Jack's doctor today to discuss the plan and schedule for Immunotherapy. We flipped through the 20 page protocol parental consent booklet, went over appointments for tests/labs before treatment, schedule of treatment itself and have our summer and fall is all mapped out.* 
(* of course everything is subject to change, but fingers crossed we stick to the plan.) 
No scans/tests/labs until May 27-29, bone marrow biopsy and other tests are on June 2 and we start treatment June 16th. (There are more appointments and tests sprinkled in here too, hearing, pulmonary, radiation follow-up, etc.)

Here's a really, really brief run down of what Immunotherapy is- it's using the body's immune system to help fight the residual cancer that is still left. Monoclonal antibodies are proteins that are made in the lab. (Ch14.18) These guys are designed to attach to the Neuroblastoma cancer cell and then the body's immune system is stimulated to attack and kill the neuroblastoma cells. Drugs that are used in this treatment are: Ch14.18, Aldesleukin (IL-2), GM-CSF and Isotretinoin (cis-RA). Depending on the week he's inpatient, he will be getting different drugs... oh and those Neupogen shots again, grrrrr.

With Immunotherapy, all our hospital admissions are inpatient stays -  Monday - Friday. (There are seven hospital admissions with a few weeks in-between stays at home for recovery) I think the biggest side effect to this is treatment is pain. (When getting drugs Ch14.18 and GM-CSF.) When he's in the hospital and getting those drugs, Jack will be on a constant morphine drip and hooked up to monitors checking vitals. (patient to nurse ratio is 1:1 or 1:2) Not a fun time, but I'm told the morphine does wonders and can be increased or decreased depending of severity of pain. He kinda knows it's not going to be a fun time, but we'll get through it. (I may have to use bribery and iTunes gift cards to make it through our week stays.)

So, in short, June through Thanksgiving, we'll be busy with this phase of treatment.

All and all, we are starting to see the light at the end of the tunnel. The last nine months have been filled with so many emotions, sometimes indescribable. We are so thankful and feel blessed to have an awesome family, friends and coworkers that have supported us through his whirlwind journey. (Although, whirlwind journey is not exactly the word I would use to describe this event in our life, if you know what I mean. :))  Even through (hopefully) Jack will be done with treatment in November, we'll still have doctor appointments and labs for years to come to make sure that sneaky cancer doesn't come back or another cancer springs up. Damn cancer, I hate it! 

Today I'm super thankful for:

- labs came back good today! No infusions. 
- weight going up - 43.4 lbs.
- Jack is able to attend school for a fews hours the last few days of school! Yippie! He has been begging and pleading to go school. Even though they don't let kids go back until after Day 100, his labs look good, he has a cute smile and did some sweet talking to the doctor. I'm happy, but also it worries me that his immune system is still out of wack and all his infant immunizations have been wiped clean. I'll keep close communication with his teacher and school nurse if any kids are sick or there is an outbreak of chicken pox or what ever. Kinda of a bummer - I don't think he'll be able to go to school in August, but hopefully at the end of October. 
- his hair and eyelashes are starting to grow back. He looks like a little old man. Bald on top, thin on the sides. (Apple doesn't fall far from the tree, apparently.)

- Joke of the day: What kind of gun would a bee use? 
BB gun! 

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