Tuesday, July 8, 2014


Today was a much smoother day then yesterday. Jack is still sore from the new line placement and his arm is a bit stiff, but he's in good spirits. 

Children's Hospital now lets one parent back in the recovery room after surgery. This is nice for the kids to see mom or dad right after surgery, but maybe a little tough the first time for mom or dad seeing their child a crying mess from the anesthesia. It was my second time back, so I knew what to expect, and let me tell you, he was not a happy camper when he seen he still had his IV in - Strike 1(They told him it would be placed and taken out while he was still asleep and he would never know.) Strike 2- His new line is not in the exact spot as before, very close and off by only an inch, but he was mad-mad about this. (Surgeon moved it over a bit to avoid infection.) Strike 3- dressing had to be changed after surgery, it was still oozing and not dry and clean like it should be. A rough mid morning through the afternoon.
All is better today after sleeping for 12 hours. He's up and out of bed, relaxing on the couch today.

This week Jack is only getting the drug Interleukin (IL-2) 
IL-2 is a natural part of your immune system, a messenger protein called a cytokine which activates parts of the immune system. IL-2 doesn't kill tumor cells directly like chemotherapy. Instead, IL-2 activates and stimulates the growth of immune cells, most importantly T-Cells, but also Natural Killer Cells (NK Cells), both of which are capable of destroying cancer cells directly. He's receiving a continuous drip for 96 hours. The medicine (only 100 MLs) is in a cartridge contraption with a pump and then put in a little portable bag. (It's the little black bag in bottom left corner of pic. I called it 'purse like', which in turn he rolled his eyes at me. Hey... just saying:)) The only other med Jack receives is Benadryl. (Tylonal as needed.) Vitals every 15 mins the first hour, every hour for the first four hours, and then every four hours throughout the day/night. We can leave the floor and go down to the fountain in the loby.) Not sure if he's up to walking around yet, but we do have play time scheduled to get out of the room. A little Mario Kart racing on the Wii also helps pass the time. 

We took our last dose (for a while) of Acutane. Horray! Little dude's skin and lips were pretty dry and peeling. 

Weighing in at barely 40 pounds, we talked with our doctor about an appetite stimulant to hopefully put some weight on him. Periactin, normally used for allergies, is also great and used as an appetite stimulant. Hopefully this will help out with the always begging (and maybe sometimes bribing) him to eat. 

Other than that, we're just going to hang out here until Friday afternoon. 

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