Today is November 2, 2018. Exactly one year ago….Jim came home from a Neurology appointment that I had no idea he was having and gave me the awful news that there was a chance he may have Lou Gehrigs’ Disease ( Amyotrophic Lateral Sclerosis or ALS). It seems like an eternity ago. For months we cried and prayed that it was not true. That there would be some other crazy explanation for Jim’s symptoms. Jim endured test after test, and got several opinions. He endured 3 months of IVIG infusions lasting 4 hours each day for several days in a row each month, hoping to stave off the diagnosis of ALS. By March 2018, they were definitely diagnosing him with ALS. Jim and I both are believers in a God who is Sovereign. A good and just God, one who sent his son Jesus Christ to pay the price for our sins and give us the opportunity to know Him better and live better lives by trying to follow Biblical teachings. We also know that just because God is good and just, it doesn’t mean we are exempt from suffering. We just know that God is with us, whatever our lives bring. That has brought us great comfort. We pray every day that our friends and family feel this too. So here we are commemorating an anniversary, we never asked for and making the best of it!
I want to share some highlights of the past few months with the Hilliard Family. You can stop now if you are bored, but this is great therapy for me!
July and August were hot, and relatively uneventful. Jim and I have lapsed into a routine of early morning coffee, bible, scouring the internet for baseball news and generally wasting time on twitter news and facebook fodder. We are very accomplished! We are also in a rhythm of two weeks of Monday through Friday Infusion treatments and then two solid weeks off with no “drip”. It is not much trouble, no side affects and is a great morning filler! Many people have asked us, “Is the Radicava Working?” The simple answer is…we don’t know. There is no way to measure whether or not the medicine is actually slowing the progression of the disease, unless we just stop getting the medicine and see what happens. Not an option! So we continue to plan any travel arrangements around the two weeks that Jim is off his infusion treatment.
We love our almost weekly or bi-weekly dinners with our son Max and our not often enough, but precious, encounters with B, Tracy and Grandson Charlie. We continue to be amazed at so many of our friends and their continual love, prayers and support. Each week continues to be filled with dinners, and invites to our friends homes. Neighbors constantly bringing us freshly baked bread, goodies and homemade soups. ( You know who you are!) One thing we have learned after having been diagnosed with this dreadful disease, is that God is with us every step of the way. We feel it in the cards we received in the mail and the texts and phone calls that are constantly encouraging us, and the people He has placed in our lives. We realize we have a very long journey ahead of us, and a very difficult one at that. But the love of friends and family sustains us and makes us confident of how blessed we are!
Even though Jim’s disease seems to be progressing relatively slowly, we still see the weakness that continues to plague his body. Both of his hands continue to weaken, and his right foot and ankle are becoming weaker. He continues to use the VPAP machine every night and for many hours during the day while he is reading, but is noticing his core and diaphragm muscles weakening. The doctors have told us that this is one of the most important things he can do to slow down the progression and protect his diaphragm muscles from weakening too quickly. The one side effect of this is constant air in his belly which becomes very uncomfortable. He’s doing really well with maintaining his weight which is another thing that the doctors have told us is very important to keep the progression at a slower pace. Jim has always been a competitor….I have no doubt in his ability to win nearly any challenge put before him!
Some of the other areas that could be affected are the muscles used to swallow and eat and also to speak. We are prayerful that Jim will not experience these, but we are preparing for all possibilities. I feel strongly that if we know what we are facing and we are prepared, then if and when we have a challenge, perhaps we will be better prepared for it. Since wrapping my mind and heart around Jim’s diagnosis these past 11 months, one thing that frightens me is the potential loss of his voice. I cannot imagine not hearing him, not being able to communicate with him or hearing him say “I love you”. If you know Jim, you know he has a LOT to say! There is so much out there now with modern technology and adaptive tools for patients and caregivers to be able to deal with ALS. It feels crazy to be doing this, but Jim has already been working on Voice Banking. There is technology out there that can transfer his actual tone and inflection onto software that is worked by eye gaze technology and a computer. Jim is almost finished with banking with 3 different organizations that use this technology….just in case. We hope we never need it, but it is in the bank just in case. If you want to read about these technologies you can click on these links.
Late August, we took a trip to the East Coast with our dear friends, Laura and Tony Brentlinger. We explored Newport, Rhode Island and had a wonderful time by the sea at Gurneys Resort. We had amazing meals, explored the mansions of RI and did some great sight seeing and shopping. We had a great time exploring this special nautical town. ( AVAP Breathing machine goes with us when we travel and it is really easy so far!)
The Brentlingers’ went back west and we traveled over to Hartford, CT for one last home stand with Sam’s Hartford Yardgoats. Jim’s brother, Mike, also traveled to CT to join us for some family fun and baseball. So grateful that we have the ability and freedom to travel and enjoy Jim’s retirement!
In September, Max settled back into University with his FINAL semester at UTA. He also was named Editor of the Lifestyle and Entertainment desk for Fall semester at the university newspaper, The Shorthorn, so he is busy working and finishing up his degree in Journalism. Graduation this December!! Sam finished his season and returned home for a few weeks. He was named to the Arizona Fall League by the Colorado Rockies, which is a HUGE honor. This is a prospect league made up of top players from all 30 major league teams. Sam was placed on the Salt River Rafters and will be in Scottsdale, AZ until mid November. So far he has had a stellar season. You will have to wait until next Blog update to find out how that all turns out!
We also had a special dinner with Blake, Tracy and baby Charlie at our home. It was Sam’s first time to meet his first nephew, since he has been out of state since before he was born in March.
We rallied the troops in Mid-September to attend and support a cause near and dear to us, bringing awareness and finding a cure for ALS. The Cowtown Affair benefitting the ALS Association of Texas held its’ first event in Fort Worth. It was our first benefit to attend and I must tell you how humbled we were at the support of our friends and family as they turned out in mass! I think we were about 28 strong and my brother Greg and SIL Kim ended up bidding and purchasing the painting done on sight by Leighton Autrey. Friends Emily and Collin Hadley were honored for their efforts in bringing awareness to the cause of Finding a cure for ALS.
After attending the ALS Cowtown Affair where we were all given red wristbands that said, “Create a World Without ALS!”…I was inspired to create our own prayer/ awareness bracelets for Team Hilliard and Jim, with our Research Fund website imprinted on the band. We are amazed at the outpouring of support for our efforts for a cure since May 1, 2018. Baylor Orthopedic Spine Hospital ( and the staff and physicians from BOSHA) made a significant donation of $10,000 last month and we are so humbled at their generosity and the love and gifts from so many. We have raised over $60,000 since May and we will not quit until we understand this disease and a treatment is found. I have plenty of extra wristbands….if you would like to have one or a few/ email me with your mailing address and I will send them. Strike Out ALS! http://www.als.net/ teamhilliard
First week of October brought our first ALS Clinic in Houston at Methodist Hospital. Going forward, we will be on a four month rotation, visiting Houston each time to assess Jim’s needs, though, each doctor and therapist is merely a phone call away with any questions or needs. Clinic is an amazing effort put on by the Methodist ALS team of doctors, nurses, staff and all other disciplines needed in assessing and accommodating patients and caregivers facing ALS. It all happens in one day and the environment was cheery, friendly and busy as you were never sitting in a room alone waiting on a physician or therapist. We met many other families dealing with the same challenges, some further along, others just beginning. It was like a cocktail party without the cocktails! The entire Clinic had a family affair feeling and though we got there early in the am, we were done and out of there by 3:30. We were grateful that Jim’s sister Claudette spent the day with us and our friend, Connie Koinis, from Houston, came by and brought Greek pastries! Connie and I have been phone friends since being introduced by a mutual friend. Connies’ husband Pete is fighting his own battle with ALS. It was so great to meet her in person! There is a chance that Jim could be a candidate for a clinical trial beginning soon in Houston/ Boston. Dr. Appel is launching a Phase 2 trial using the extraction of T- Reg Cells. I have attached a link to a news story that explains the process. Prayer Request: Pray that if it is God’s will, Jim is chosen for this trial and that it might bring success to the research team and be a step forward to slowing or stopping the progression of ALS. The benefits for Jim would be possibly stopping progression for the year long trial. The risk….not knowing what will happen after the year is up. We got to spend the evening at Jim’s brothers house for a wonderful family/friends dinner! My birth mother Louise was able to come and Jim’s long time friends from Port Arthur and UT Football, Paul and Mary Anne Walker came too. Sometimes challenges open the door to better relationships and kindness!
Link: New Potential Therapy for ALS
Mid October our first born turned 28!! Happy Birthday to you! You are such a joy and support to your Dad and me. We look forward to what your future holds!!
OCTOBER BASEBALL? Oh yeah!
Since Sam was assigned to AZ Fall League, we made another excuse to fly out for a baseball adventure! Again, retirement is a true blessing! We can go when and if we choose ( except for infusion weeks). We flew to AZ for a week of sun, great baseball, amazing meals and a little shopping and girl time for me with my sweet friend Tana Herrington. Pics to prove it!
We are home from another sweet trip together….and it is the eve of November 2, 2018. One year ago tonight, I had no idea how our lives would change the next day. Love your family, hold them close. Be kind to others and focus on what is good and right in life. We are holding onto the promise that God loves us and is sovereign in all things….even the hard times.
More celebrations to come in November and December. We are grateful for each and every one! I am going to make a commitment to blog every couple of months instead of waiting so long. Me thinks I talk too much….and this was the condensed version!!
Love,
Tamara
Philippians 4:6-7
“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”