Thursday, March 10, 2022

Thursday, March 10, 2022

Tonight's picture was taken in March of 2006. Mattie was about 4 years old and he was doing some of his favorite things.... building with Legos and setting up his train tracks. In fact, there was never a day without a lot of activity going on right in the middle of our living and dining rooms. 

Quote of the day: Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you. ~ Misty Copeland

This morning my dad had back to back therapy until noon. So it made no sense for my mom and I to get to the hospital before then. Not having a rushed morning in weeks, felt wonderful. Though I had chores to do and emails to catch up on, I did not feel like I had to be jumping to meet my dad's every need.

When we got to the hospital, we found my dad in his room and in his wheelchair. He was wiped out from four hours of therapy. In addition to that he is in constant pain and irritated by a terrible rash on his back. This rash started on Saturday, after wearing heart monitor devices and pads to protect his body from pressure sores. Rather ironic. He has no pressure sores, but instead he is clearly allergic to the adhesives and his back looks red like a lobster with blisters. Honestly if I did not know better I would say he had poison ivy. 

In any case my dad was basically asleep for the entire time we visited. Though resting, on the half hour he complained of terrible itching. Moaning, complaining and scratching. Which only makes it worse. There isn't enough creams and ointments I can put on him to bring him relief. By the evening I gave it to his nurse. As she came in to find out how he was doing (after being gone for HOURS). He responded "fine," and I SNAPPED her head off. I told her he isn't fine and if it weren't for me, she would have been in his room putting cream on him every 30 minutes. Not a fan of his nurse today. 

This is my dad's schedule for tomorrow. It should really wipe him out. We have to get to the hospital before 9:30am, because the treatment team rounds at that time and wants to talk with patients and families. I have no idea what on earth they are going to say about my dad tomorrow. They are either going to continue to work with him or discharge him quickly. 

While at the hospital today, my friend Margy's husband went to visit Mattie's memorial tree. This was a Margy tradition, to visit his tree on milestones and anniversaries. Ken is keeping that tradition and created this beautiful ornament with a tribute to Margy and Mattie. 

It features Mattie Miracle's new program, M & M Wishes, which stands for Margy and Mattie. This program provides funding up to $1,000 to children with cancer to fulfill a wish list item or trip. 

A photo of the four of us together. 

Ken at Mattie's tree!

Meanwhile, Peter sent me this photo of our two fur babies. Eagerly awaiting my return tonight. 

When I got home at 7:30pm, I found that Peter was sick with food poisoning. I gave him my anti-nausea meds, with this hope that this will stabilize him so he can sleep. 

But the highlight of my day was this surprise treat from the Chatham Candy Manor from my friend Colleen. Colleen and I met at Boston College, as we were both getting master degrees in biology. Colleen was in my bridal party too and though we live far apart, we remain connected through a special friendship. This sweet treat really brightened up my day and week. I am very lucky that in the midst of such chaos and crisis to have incredible friends.