I thought we were getting away with an easy day at the clinic. After we met with our NP and discussed how Kai has not been doing well, we decided to skip his chemo (avastin) but they wanted to give him an IV dose of Zofran and Reglan to help his stomach and reflux. He… Continue reading Overnight at CHB

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… Continue reading Another not so good week

Kai’s doctors and therapists suggested we apply for a handicapped placard a long time ago. Its one small thing that may help make life a little easier when out with Kai and his feeding tube and his suppressed immune system, etc. About 6 months ago I got are approval letter in the mail stating that… Continue reading Handicapped placard

So far Kai’s new at home protocol has had us at the clinic even more than the last protocol. We still go in every other week to get the Avastin infusion and it just so happens that one of his at home drugs cycles every three weeks. That third week we have to go to… Continue reading Not so easy day at the clinic

This years Jimmy Fund Walk is less than a month away! I want to thank those who have donated to the cause this year So far Kai’s Fight Club has raised over $72.00 for Team H.E.A.L.S. helping bring the teams total to an amazing $10,369.45!!!! Since our team has met the $10,000 requirement I am… Continue reading One Month until the WALK!

It seems as though every time I say things are going well for Kai he takes a turn for the worse. Its nothing too bad (yet) but ever since his Avastin infusion on Wednesday he has not been himself. He is whiney and uncomfortable again. He has not slept well all week. I tried all… Continue reading Just another week

It’s been a little over a week since starting Kai’s new protocol and so far he is handling it very well. He has not needed any anti nausea or pain meds! He is a bit tired, but other than that he is doing well. I am also handling it better than expected! We do meds.… Continue reading Enjoying Summer

Today we started Kai’s 3rd new chemo protocol in 13 months… We really NEED this one to give us something as we are running out of options and time for Kai.  His tumor is growing in a really bad spot, and while it is not growing aggressively the consequences of ANY growth in this area… Continue reading Chemo Protocol -take 3

It’s that time again. The 2012 Jimmy Fund Walk is quickly approaching and we would LOVE for you to join in the fun! last year was our first year at the walk, and we were delighted to see how many came out or donated in support of Kai. This year our efforts will go even… Continue reading Jimmy Fund Walk 2012