I tried to be patient waiting to hear from Pittsburgh about the trial for Kai, but by Wednesday I was pretty restless. I started going a little nutty emailing our NP rambling emails about the different treatments and how Kai is doing and how I still don’t know what to do. A few minutes after… Continue reading Just looking
Yesterday was Kai’s official birthday. My little baby boy is 2! It’s hard to believe he has only been in my life for two years. I can hardly remember life before him and I just can’t imagine my life without him. All week I have been thinking back to the day of Kai’s birth, and… Continue reading Turning 2, a look back
MRI never happened yesterday. He fasted all day for nothing. After we knew MRI wasn’t going to happen I was able to feed him some and he actually ate pretty well. He had some Mac & cheese and chocolate pudding with peanut butter ( his new favorite way to eat his PB!) He probably ate… Continue reading We’ll be here all weekend
The results of last weeks MRI were not what we were hoping for. After the team compared this MRI with one Kai had in December, they agreed the tumor is growing. This tumor is expanding in the mid brain/ brain stem area, which coincides with his current symptoms of lack of head control, muscle tone… Continue reading MRI results
We have been trying anything and everything to get Kai to be ale to play, interact and do therapy. And while we do get some help from different organizations, we would not be able to provide Kai with these tools, toys and resources if it weren’t for all of the generous donations made Kai’s Fight… Continue reading Favorite Things
So a decision has been made. Next week Kai will start on Avastin/Irinotecan. This protocol will be an IV infusion every two weeks at the clinic. It is disappointing to be starting all over again, but tonight I am relieved that the decision has been made. I went into today still not knowing which way… Continue reading Avastin/Irinotecan
We are off to the clinic in the morning to Talk about what to do next with Kai. I was given 4 protocols to decide from and I still have not made a concrete decision…. How can they expect me to make a decision like this anyway? I am not an oncologist or a doctor… Continue reading Pick your poison
So it official Kai has failed off of his first chemo protocol. It’s been a few weeks in the making, and not a total shock, however no less disappointing. Over the past few days Kai had a series of vision tests, at Perkins and Children’s, and just as suspected his vision has worsened. His visual… Continue reading It’s official
This weeks clinic visit was a bit different for us. My mom was working, our nurse practitioner was on vacation and we had to be there extra early ( not that that’s anything new) for Kai’s first swallow study. Thankfully our good friend Molly came to spend the day with us and the time just… Continue reading A healthy dose of Reality
An MRI was ultimately done to get a better look and make a plan for placing the shunt. Pediatric MRI are done with sedation in order to keep the baby still. It was so scary to send our little baby to be put under. As Mark and I waited we tried to focus on the… Continue reading Hypothalamic Optic Glioma
Keikikai 