Mattie's Blog and his Fight Against Osteosarcoma

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically have stopped writing on September 9, 2010. However, like my journey with grief there is so much that still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with me, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki

June 5, 2020

Friday, June 5, 2020

Friday, June 5, 2020

Tonight's picture was taken in June of 2003. Mattie was a year old. He was sitting inside his VERY LARGE playpen. Which sat in our dining room. In theory, the playpen was for Mattie, but for the most part, he was never in there without one of us. As you can see, it was Peter's turn that day. I remember some days being inside there and truly wanting to put my head down to take a nap. It never happened, but I also knew that everything inside this play space was safe for Mattie.

Quote of the day: Today's coronavirus update from Johns Hopkins.

number of people diagnosed with the virus: 1,893,934
number of people who died from the virus: 108,920

My dad finally had a hiccup free night. It is my hope that this good trend lasts the entire day. What made the difference? Baclofen! Baclofen is used to treat muscle spasms caused by certain conditions (such as multiple sclerosis, spinal cord injury/disease). It works by helping to relax the muscles. Specifically it can calm the diaphragm and reduce spasm (causing hiccups). I found this drug myself after reading three peer reviewed papers. I even sent the papers to the doctor and requested that Baclofen be tried. As I could hear on that phone that being on thorazine for a week was not only ineffective, but was causing other symptoms like anxiety, agitation, and outbursts.

Last night, one of my favorite students, who is now a pediatric nurse, wrote to me after reading the blog. I am so honored that Ariel continues to follow our journey, and I am always touched when she tells me that Mattie influenced her career choice. Ariel read about my dad's persistent hiccups and wanted me to know that in her experience working with pediatric oncology patients, that chemo sometimes triggers persistent hiccups. When that has happened, her hospital used Baclofen. She wanted to know if we tried it! Ariel's email was a true gift. Because I may have read about the effectiveness of Baclofen with patients in research studies, but Ariel's clinical experience confirmed for me that it can work and that my suggestion wasn't off base!

Thank you Ariel! Hearing from you enabled me to have hope that we were making the right decision to change medications. I haven't taught at a university in over 11 years. Yet the wonderful connections I made with students continues to live on. That brings me great pride.

We took Sunny for a walk on Roosevelt Island today. It was his first time back since his surgery in April! He loved it, but the heat wore him out. Along our journey we found a turtle laying eggs!