Another not so good week

Kai has had a pretty ruff few days since the episode at the clinic last wednesday. The new drug (cyclophosphamide) that he started on thursday seems to be affecting him. About an hour after giving it to him he starts to get irritable and upset, then he starts to cry and make his little sad face (which is a very rare thing to see). The first few days i tried everything, anti-nausea, pain meds, anxiety, increased fluids/food but nothing was helping. By friday night things were getting worse and I actually called into the clinic to see if we could skip chemo that night. His doc. was on call and he felt it was probably still the effects from the Etoposide, that we had just stopped, and not a reaction to the cyclophosphamide. He suggested we keep on track with chemo, so I did. Saturday I decided to try dosing him with zofran an hour before giving the chemo and he seemed to tolerate it a little better. He was still not happy and I did end up giving him some pain meds that day too, which i am not happy about. I still feel that if he needs all of these ‘other’ meds just to be able to deal with the chemo, then we need to adjust something. I know that thought process is probably unrealistic, but I try to keep his overall quality of life in mind. If he is in pain from chemo or out of it from pain meds, what kind of life is that???

Anyway, Saturday night I woke up to him yelling at 3 am, and when I raced in his room he was COVERED in vomit. Sunday he did pretty well as we went to hang out with our friends Ashley and Joe in Boston.
Monday we had another little trauma when the dog got caught up in Kai’s feeding tube and it ripped right out of his belly and went flying across the living room. Of course we had a social worker visiting at the time and Mark and I made a mad dash to grab the Mickey button deflate it and get it back into Kai’s belly. Kai of course was upset, scared more than hurt I think. It took a few minutes but he settled down and his belly seemed just fine. No blood. No swelling. Thankfully no ER visit! I talked to a few tubie mom friends of mine and they all assured me ‘It’s not so bad the second time…or third or fourth.’ Apparently most kids yank their tubes out all the time! I was glad to hear we aren’t the only ones, especially after today when it got ripped out AGAIN! this time is got caught on his chair as I was picking him up. Poor kid! I will saw this time he barely made a peep. I guess it really isn’t so bad the second time around. :/

Last night after Kai’s bath I noticed there were some hairs in his comb after combing his hair. I tried to tell myself it was just because I really scrubbed his head when washing his hair, but this morning his pillow was cover with tiny little baby hairs and he has a few smooth bald spots on the back of his head. It looks like chemo has finally caught up with Kai’s hair.
I have heard lots of parents get really upset when their kids start loosing their hair and I always thought it was a silly thing to be upset about (this coming form the girl who was upset I can no longer use cloth diapers, ha) I mean in the big picture loosing his hair is the least of our worries, but I will admit seeing that hair in the brush last night made my heart sink a little. It took so long to grow his hair and I know once it falls out he is going to look just that much sicker and that is kind of sad.

So the plan is to try to take some nice pictures of him in the next few days while he still has hair, and then start working on making some hats. He always has looked super cute in a hat!

Tomorrow we head into Boston for another round of Avastin. I am happy our regular crew will be back from vacation! Hoping for a smooth day, we really can’t afford anymore set backs right now.



Today Kai received a package from our good friend Molly. Molly made him this doll to look just like him, soft fuzzy blond hair, big brown eyes, and a shunt! She did such an amazing job and Kai loves exploring all the textures on his new baby. Thank you Molly!! Xoxo

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