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 hunting for eggs with the cousins down the cape.
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
Keikikai 