They past few weeks have just been jam packed full of appointments and meetings. We spent three days in Boston last week and our usual Wednesday visit this week, and we are really no closer to knowing what to do with Kai’s chemo. Last week: Tuesday– we met with ORL to check on Kai’s breathing… Continue reading Leave no stone unturned
Last week Kai had his routine 3 month MRI. Again they said it was stable. They said the tumor looks ‘exactly the same’ as the last MRI. Of course this is what we have told to hope for… They have said all along that this chemo protocol is ‘not intended to shrink the tumor’ the… Continue reading ***Overdue Update***
Kai has had a great few weeks off of chemo so far. The weather has been getting nice. We have been going for walks and meting with friends. A few days ago he started getting stuffy again and has been very sleepy too. I am not sure if it is another cold or allergies??? Either… Continue reading Playdate Pics
Last week was Kai’s 30th chemo treatment, marking the half way point of his protocol. 30 down, 30 more to go. It is hard to believe that we have been doing this for 8 months! I stopped keeping track a while ago and this half way mark kind of snuck up on me. I dont… Continue reading 30 weeks down. 30 more to go…
Kai did surprisingly well after his treatment last week. His cold cleared up and no vomiting this week! He is still pretty sleepy and has started tugging at his ear again, but hopefully it is just the teething. A BUNCH more teeth are coming in! Since he was feeling well we were able to keep… Continue reading Old friends and new devices
Getting ready for week three of this cycle and I have to say I am really dreading it. Kai and I had such a nice day today. We had three of our favorite appointments, OT with Paula this morning, a visit with Jen the volunteer and then an appointment with Jacqueline for acupuncture. Kai played… Continue reading Dreading week 3
After DAYS of Kai feeling pretty miserable, he seems to be almost back to himself this morning….of course tomorrow we are back for chemo Kai developed a pretty nasty cold after last weeks treatment. There were a few nights of continious hacking all night long and he spent most of each day sleeping. He wouldn’t… Continue reading Feeling better…just in time
A while back Kai’s visual aid, Linda, measured him for an activity table. It is a service offered by the Perkins school to kids with vision loss. Linda came by yesterday and dropped it off for us! It is so beautiful and Kai absolutely loves it! The volunteers at Perkins make them specific for each… Continue reading Activity table and chair
Kai’s Fight Club hoddies are in! Quantities are limited, so get yours soon. They are a nice soft mocha brown with a golden print, representing childhood cancer. They are men’s size and run a bit big, I wear a small which fits just right, comfy cozy! In stock: 2 small sold out! 2 medium 4… Continue reading Hoodies are in!
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
Keikikai 