Kai had his 4th week in a row of treatment yesterday, which means we successfully finished another cycle! He will now have a two week break before starting back up again. After next months cycle we will be back in MRI to see how things are looking. His treatment really seems to be settling into a predictable pattern, which is nice but also a little strange. I remember in the beginning of all of this people kept telling me it would get easier, it would just become normal. At the time there was no way i could believe them, but here we are….this really is just our life now.
I still very much take it one day at a time, I can’t remember the last time I though about our future. When you live in the world of oncology you start to read the timeline of your life in terms of treatment cycles, procedures, and the dreaded scan dates! But with each day one appointment is behind us and we are one step closer to the next. There is always something to be anxious but there are always so many things to be working towards as well. I think thats the part that keeps me sane in all of this! Weather its working on things with Kai’s physical therapy, nutrition and diet, fundraising or helping others we try to keep our bodies and minds pretty busy these days.
Our visit to the hospital yesterday started with an appointment with GI. They have cleared Kai for the Mic-key button switch sometime in the next two weeks. We don’t the exact date yet, but we are hoping to get it done before starting his next cycle. The switch from his peg gtube to the Mic-key is pretty simple and non invasive but they do go down into his tummy with a scope so he will be sedated. It should just be day surgery so we should be in and out in one day. Part of yesterdays appointment was the Mic-key teaching consult with nurse Jen. She did a great job and we had a nice time talking to her about Kai’s blender diet and our new project Tubie Friends. She was very excited about our little program and so are we!
Tubie Friends is a mom run volunteer program, which provides tube equipped stuffed animals to children with feeding tubes. These Tubie Friends animals help normalize tube feeding for children and have proven to provide great comfort to them during procedures and surgeries. Tubie Friends help spread awareness and acceptance, and are also a wonderful teaching tool for hospital staff, sibling, teachers and classmates.
Our initial goal is to start coordinating with the Jimmy Fund and Childrens hospitsl Boston to provide Tubie Friends to oncology patients with feeding tubes.
We hope to eventually be able to provide Tubie Friends to any interested child/family with a feeding tube
at both Children’s Hospital Boston and Umass Medical Center
but… we need your help!
The average cost to provide a Tubie Friend to a child in need is about $15.00
If you are interested in sponsering a child you can make a donation of any amount here
You can also donate by sending a Build a Bear e-gift card to Keikikai10@hotmail.com
We are kick starting the program by donating $100 from the Kai’s Fight Club fund. We have purchased 5 animals and are preparing them for their forever homes!
How it works: Making a Tubie Friend
Most of our Tubie Friends are created from Build a Bear animals (although Build a Bear is in no way associated with our program)
Once an animal is purchased, one of our ‘surgeons’ will securly sew in the appropriate feeding tube device.
All our tubes are donated directly from the medical supply company, and are rendered unusable.
Once the Tubie Friend is ready to go, we deliver them to the hospital where they are matched with a child in need!
All of our Tubie Friends are placed at no charge, so we have taken on the task of raising funds to keep this program going!
If you are in need of a Tubie Friend please contact us directly @