A new Direction/ Houston Methodist

April and May were busy with planning our Radicava medication schedule and preparing for a 2.5 day evaluation with a new team of Doctors at Houston Methodist. Dr. Appel and the ALS Team Hope were on our agenda for May 22-24. We drove down to Houston on Monday evening and had a lovely dinner with family. We reported to the Neurology department at 7am  on May 22, ready for our two and a half day evaluation. It is all done outpatient, but over the course of three days, Jim had another EMG test and a nerve conduction test. He was seen by an Psyscologist, Occupational Therapist, and Physical Therapist. He also was seen by a Pulmonologist Tech who tested his lung function. Then Dr. Appel and his team made rounds. Dr. Appel did his assessment of Jim and we were amazed that an 85 year old man could have such spunk and strength! He was truly impressive. But what impressed us most, was his love of what he does, his zeal for research and dedication to helping those who are living with ALS.

Tuesday night Jim had a date with the overnight sleep lab. The Clinic at Houston Methodist are firm believers in strengthening the lungs from the beginning to help deter the weakening of the diaphragm muscles. Before reporting to the Sleep Lab, we enjoyed  another meal out that night with Jim’s brother Mike and sister Claudette. Mike just recently finished an agressive round of Chemo and Radiation for Throat Cancer and is doing very well!

fullsizeoutput_25b2Dinner at Bengi’s, Houston. 

Jim woke up early after the sleep lab and Wednesdays agenda was full as he was scheduled for more tests and evaluations and a twist of scheduling Jim for a lumbar puncture ( an out patient procedure to test spinal fluid). We would head back to the adjacent Marriott hotel where we were staying because Jim had to lay flat for 12 hours after the Spinal tap to try to avoid side affects of headache. We enjoyed in room dining and a good nights rest!

IMG_0374.JPG

In the hospital just before Jim’s Spinal Tap.

Our last day was filled with follow ups from the entire team. We met the infamous Dr. Holland, a Pulmonologist who believes early intervention in strengthening the diaphragm muscles is key to prolonging disease progression.  We received prescriptions for new medicine and a leg orthotic that will help keep his right leg muscles strong. Just in the last month Jim has been having to work harder at picking up his right foot, so perfect timing! They said wearing the brace will keep the muscles from weakening as fast. JPer Dr. Holland, Jim is also being fitted for a night time breathing machine called an AVAP. It will help keep the diaphram strong and fuctioning and also a cough assist machine. All these things are working toward fighting off the muscle weakness. We were visited by a rep from MDA and ALSA, both assosiations that asssist with care and needs of people with ALS. We were given our assignment to come back to the Houston ALS clinic in October. We will make this trip once every four months to visit the one day, comprehensive Clinic. In the mean time, we have a notebook full of information and a business card for every clinician, therapist, nusrse and doctor if our needs change before Oct. More than anything, we have a plan.

In the middle of all this was our #teamhilliard fundraising campaign we launched to bring awareness to ALS. May is ALS Awareness month and we decided to get involved and get behind ALS Therapy Developement Institute in Cambridge, MA. They are the only non-profit, Bio-Tech company to research solely for ALS. We set our goal of 25, 000 and because of so many generous friends and family we reset our goal to 50,000! As of this writing we have raised over 42,000 $ for ALS TDI! THANK YOU SO VERY MUCH if you participated with us in this journey! Team Hilliard will continue to fight for a cure, long after the month of May is over. We will fight til a cure is discovered. Click on link to see our ALS Research Fund Page for Team Hilliard.

www.als.net/teamhilliard

The last six months have been a whirlwind of emotions. the thing we most desired is to have hope and a plan for fighting ALS. We found that in Houston. Two and a half days was a big committment and subjecting Jim to more poking and prodding was a pain, but we both feel it was worth it! Please continue to pray for healing, for strength for Jim and our family and for the researchers working so hard to find a cure!

May 10, 2018

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 frist 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 Developement 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.

cropped-img_02332.jpg
With new grand “Charlie”

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 te 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 Developement 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.

 

 
It is May 10 and I am in the Hartford, CT airport as I write this blog. Feeling grateful that we are able to travel and enjoy good times together. 
Our next step:  Beginning round 2 of Radicava and then we are  going to Houston Methodist in late May for a 3 day evaluation by Dr. Appel, a renowned Doctor in the field of ALS in treatments and reasearch. We will be considering the Houston ALS clinic as one of our options for future care. 
 
All that being said. We are positive and hopeful. Grateful for each day we are given. We believe in healing and the power of prayer. Thank you and please continue to pray for Jim and our family.