Seems like months since I wrote the initial entry into Team Hilliard Blog. But it was only April. Much has happened since the inception of Team Hilliard blog…Here is an update.
It has been a little over 6 months since this journey began and we heard those first words, “You may have ALS”.
Two weeks out of March were spent relaxing and enjoying Colorado Rockies Spring Training. Our friend Don Guion, our son Max and Jim’s sister Claudette all joined us for period of time and it was a great time with friends and family. We also had Chivas with us, our German Shepherd, so it was almost like home. Sam was invited to Big League Camp so we got to see several Major League Games where Sam not only played but shined!
While we were out there, we began to have conversations with Rob Goldstein from AlS Therapy Development Institute ( ALS TDI) at the introduction of my friend Emily Hadley. Rob was so helpful in educating us on all the latest trials that are available and how to decide which ones to look into. We began to research ALS TDI more after our initial conversation and began to be impressed with the kind of Non- Profit organization that would focus solely on the disease, ALS. The idea began to form about lending our voices and influence towards fundraising for ALS TDI. They were instrumental in helping us create our page, though we were still not ready and were not sure how to go about making our news public. www.als.net/teamhilliard
While we were in Arizona, Jim’s son Blake and his wife Tracy had our first Grandson, Charles Oliver Hilliard! We were so excited to get home so we could hold the little nugget.
All the while in AZ we spent many hours trying to get the new medicine Radicava approved and set up. Jim was finally approved and we were able to set up an infusion center in North Richland Hills for him to be able to get daily infusions. He had to have a Picc Line surgically inserted that serves as the access to receive the medicine. He began the infusions on April 27 and finished the first 14 day regimen on April 27. We have been in the 14 day off period since then. I have had to learn some nursing skills since then and now we daily flush his picc line with syringes of Saline and Hepron to keep it from clogging and getting infected.
We worked the later part of April on the strategy to go public with Jim’s diagnosis and begin our efforts to fundraise for ALS TDI, our choice for research dollars. May is ALS awareness month and my birthday was May 1, so we decided to launch our fundraising efforts then. We were all nervous about it and we knew it would bring on people asking us about the disease and bringing up the tough subject, but we have also been so blessed by the well wishes and prayers that have flooded our way.
May came in with a roar with my 55th birthday, launching the Research Fund Page and getting ready for our trip to Hartford, CT to see sam play baseball for the Hartford Yard Goats. Colorado Rockies AA affiliate.
We had an absolute blast and enjoyed time with Sam, Kat ( Sam’s Girlfriend) and we even got to see two of my old friends, one from home and another former Miss Connecticut 1985.
We also received the good news that our son Max was named editor of The Shorthorn Newspaper, for the Lifestyle and Entertainment desk, a promotion. He will now be on salary and it will be a great internship and learning opportunity for when he graduates from University of Texas at Arlington in Dec. 2018, with a degree in Journalism. Yay!
So in regards to our Team Hilliard ALS Research Fund Page:
First of all, to those of you that donated precious dollars and took the time to send our ALS Research Fund Page to your friends and families, we thank you from the bottom of our hearts. It was a big ask, and we appreciate every effort! I have taken time to personally thank each giver on our page. We are less than 1000$ away from the goal of 25,000 in only 10 days! We plan on continuing our efforts to fund ALS TDI. Thank you too, for sharing on your social media pages and asking your friends to share. Creating awareness is paramount and raising the dollars for the researchers and doctors who are working to find treatments and a cure are now a priority for Jim and I.
I wanted to let you know I carefully researched the ALS Research Development Institute before deciding to partner with them to send the precious dollars that everyone has given. In addition, while we were in Hartford, CT last week, we drove the hour and a half to Cambridge, MA to visit the ALS TDI in person. ALS TDI is a charitable 501 C3 Biotech Research Institute that is 24/7 trying to find treatments and a cure for ALS. I am glad we visited and met with the doctors and scientists that are so passionate about what they do. It is 24/7 ALS all the time, based right in the heart of MIT Campus. Although the visit was emotionally difficult, we were impressed by their passion for their work. So many committed people and many of them have a personal connection to ALS. Heartbreaking and inspiring at the same time. I believe in ALS TDI and what they are doing. Please join us and share if you wish to help further the cause of slowing and ending this dreadful disease.