A few days ago a friend (also a bereaved mom) was talking about this thing that tends to happen after you have a kid with cancer. You become the ‘go to’ person when any other child is diagnosed. It happens to me all the time. My friend asked, Why would some parent of a newly… Continue reading How can I help???
Powered by Kai to Advocate for Families Now: My testimony in support of S1138 On June 10, I joined a small group of pediatric palliative care professionals and advocates to testify before the State on behalf of providing comprehensive palliative care to ALL qualifying families in Massachusetts. I really had no idea what I was really agreeing too… Continue reading E pluribus unum, one out of many – advocating for all.
Today will be hard and long and filled with tears and hopefully a little laughter. In the days since Kai left us we have been surrounded by the love and support of our family and friends. Our house has been packed with food and drink. Candles have been lite and a fire in the fireplace… Continue reading Phantom cries
This morning we had about 5 minutes of open eyes. His hands were cold and his fingers were blue yet his breaths and heart were steady. By midmorning his head was feeling warm to me and I noticed the color came back into his hands and feet. We decided to do some suctioning to try… Continue reading Saturday -fever
I tried to be patient waiting to hear from Pittsburgh about the trial for Kai, but by Wednesday I was pretty restless. I started going a little nutty emailing our NP rambling emails about the different treatments and how Kai is doing and how I still don’t know what to do. A few minutes after… Continue reading Just looking
Kai has kept me quite busy the past few weeks. For a kid who doesnt do much he sure has a hopping social life! This weekend kicked off the first of the Halloween parties. Which of course meant last minute late night costume making followed by really last minute early morning treat baking so I… Continue reading Let the Fall festivities begin
****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!
****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
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