Our day was very pleasant - the doctor's visit went fairly fast and effectively, JP had his check up and then we went back to the infusion area where he received Vincristine and Doxorubicin through his port. They told us the Doxorubicin almost always causes hair loss, mouth sores, red/pink colored urine and nausea and vomitting. All things to look forward to I suppose...
After the clinic visit we went down to the RTU where JP had his lumbar puncture and Methotrexate put into his spinal fluid. Before we went back, Lindsey (a child life specialist) brought in the iPad with that Tom the Cat game. JP's played it before but you would think he was just seeing it for the first time with the way he was giggling over it. He had the funniest high-pitched laugh and Lindsey was cracking up. All the nurses were laughing right along with him - especially when he made the cat fart - that was his best giggle. Oh, the joys of boys right! He wanted me to take him back to the room so I did and Lindsey came with me with the iPad and normally when they give him the anesthesia his eyes roll back and he slumps over, but he did NOT want to go to sleep. He was pulling his legs up towards his body, arching his back and trying to reach out his arms. It wasn't like he was having a seizure - although the movements were similar - I could tell he was really trying hard to keep playing. It was still unsettling watching him pass out, but I did smile a little seeing how badly he just wanted to play.
He also woke up so much better this time. Normally, he is ornery and crying and mean, but I leaned over to him and rubbed his arm and whispered in his ear, "JPeasy, Mommy and Daddy are here. Do you want some Doritos?" and his eyes opened and he sat right up. He picked out some "Red Ritos" and got a chocolate milk. He acted more like he was just waking up from a nap, not anesthesia. It was such a nice change from what we normally experience... He was so happy all day and obviously that made it all easier.
After we got home, we could tell he wasn't feeling well. We gave him some anti-nausea medicine and he was crying about his tummy hurting. We started back on the steroids - almost 3 times the dosage he was on last time - so we have that to look forward to as well. Poor guy, he has to be so brave all the time. I sometimes wonder if he thinks that feeling yucky is just how people feel...
Here he is cracking everyone up before his LP
Here's his points of view for the day
Cars... of course!
Self portrait
The research student gathering info from us about a study we're on...
His shorts...
Super focused while helping his nurse get his band on
"JP, do you feel ok?"
Oh I just love that little guy. It's amazing to me that although he is going through such hard stuff, that he is so sweet and makes other people laugh. He really is just a joyful little guy. Sorry for the long road ahead.
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