I know you all ave been waiting for an update on Kai. The truth is he is not doing well. After leaving the hospital last week he has had a pretty ruff time. We were only out one day but it felt like forever because he was so miserable. I was so worried about him,… Continue reading Post hospital update
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
I went into chemo last week feeling pretty uneasy. Kai’s head control and muscle tone has continued to worsen. Because of all our concern we decided to meet with physical therapy at children’s again to see if there is anything else we can be doing to help him get stronger. She saw him a few… Continue reading MRI July 5th
Having chemo every other week really feels like we have some time to live a little bit of a normal life. …but since we still spent 4 days at children’s hospital in the past two weeks I don’t think our definition of normal life is very normal…. What makes the greatest difference is that Kai… Continue reading EEG
We have been to Perkins School for the Blind a few times now but only for Ophthalmology appointments. The first time we went I was stunned at the size and beauty of the campus, but we are usually there after school hours and very few people are around. The place was still a bit of… Continue reading Perkins Early Connections Conference
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
Kai and i spent a few days in Boston again this week. Tuesday was our first appointment at Perkins School for the blind and of course wednesday was chemo. We spent tuesday night at Ashley and Joes (thanks for always being there for us!) so we didnt have to drive in and out twice. Our… Continue reading Perkins School
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 