Today was supposed to be a big day for us. First, Founders day at Perkins, an assembly put on by the students that I was really looking forward to, and then we were due in clinic to discuss treatment options. I have been pretty anxious about this appointment as I am starting to feel like… Continue reading Today WAS the day
I am so thankful we made it through the frankenstorm nearly untouched. We lost power for a few hours but didn’t loose any food or meds! It has been overwhelming to see the devastation in our neighboring states. I can’t stop thinking of our friends in PA and NJ and NY. I really don’t know… Continue reading I can see clearly now the rain is gone..
***Over the weekend Kai and I are back at Camp Sunshine and this time we brought Gigi (my mom)! She has been there to witness most of the awful things Kai has had to endure over the past 16 months I really wanted her to experience some of the good stuff too. Camp is one… Continue reading Camp 2.0
The past few days have been tough on me. Kai is feeling better since we are treating his ear infection, but not as good as I had hoped. I’v been spending my days researching these stupid tumors again. Looking for treatments. Hoping that I can find something that I can convince myself might help him.… Continue reading Getting hard to do nothing
We had a good little stretch there. The week leading up to the wedding Kai was doing very well. He was on minimal meds and he had been doing great with all of his activities. I was really settling into the possibility that we would have many more of these content, stable days to share.… Continue reading ‘typical’ kid stuff
****A week ago today*** Just as soon as I thought things would be slowing down a bit, life has been busier than ever. After a non-stop week of Perkins, respite, VNA, and therapies, we packed up the car Friday and headed down to Connecticut for Uncle Pat’s wedding!! The wedding was just perfect and everyone… Continue reading The wedding!
Kai had been doing well for a few days. I have been able to back off of some of his pain meds (oxycodone) and eventually started pooping on his own (without the use of a suppository)! He has been tolerating a bit of food each day and has been awake and alert most of the… Continue reading A little fun
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