We had a follow up appointment at Dana Farber last week. The plan was to clarify our end of life wishes for Kai, DNR, autopsy, etc. Its kind of crazy to think you have an appointment for these things, but we did and I was dreading it. My regular chemo night insomnia has turned into… Continue reading And the confusion sets in
There has been this leuming finality to every day since taking Kai off chemo. Like with every day that passes and every decision I make I am loosing something close to me. Loosing a part of me. His life is in my hands and mine in his, and it is a scary place to be.… Continue reading Worth the Trip
****This post was written last week a few days after starting Kai’s new pain meds. It was a ruff week and he was sleeping a lot and barely eating which all made us feel the end was near. It was a long hard week and I guess I forgot to post this writing so I… Continue reading Sleep -last week
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
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
Kai went into MRI yesterday around 3:30 everyone was excited that we were getting in ‘early’ since our slot wasn’t until 5:30. They must have forgotten that we also waited all day yesterday…thing seems to move a lot faster down there on a friday…just saying Anyway they got us in early. He did ok. Because… Continue reading MRI ‘stable’
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
Keikikai 