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One Year Ago Today…

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.

www.modeltalker.org

Projectrevoice.org

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 it’s 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

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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.”

 

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Escaping Texas Summer…

My last blog post was the end of May and we have been so busy the entire month of June and the end of July is quickly upon us. Today is July 20, and we find ourselves back in the hospital for outpatient surgery to replace a medical port that Jim had implanted on June 1. All went well but in Mid July the nurses at the infusion center kept failing to be able to access it…so it was back to Dr. Stiefel. Turns out the port is bad and they are replacing it today. But….since June 1….

Thats is us in the Hospital bed June 1, waiting for our friend,  Dr. Paul Stiefel, to take him away to have the port implanted. Good times!

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The next result of our very intensive Houston Memorial ALS evaluation last May was the visit from Jordan, our new Respiratory Therapist, with RQS Breathing Services. Jordan brought Jims’s new AVAP machine, that we quickly renamed “RQD2”, since it looked like a robot on wheels. He also brought a Cough assist machine and taught Jim how to use it 3 times a day to do deep breathing exercises that his Pulmonologist, Dr. Holland, prescribed for him. We are truly grateful to finally have some tangible things to do to fight off the creeping ALS. But honestly….this delivery was a reality check into how much our lives have changed and will continue to change. God is good every day and all the time, even when it seems like there is no hope….hope appears. I am reminded of a favorite verse and one our friend and pastor, Russ Barksdale tells us to hang on to…

Isaiah 40:31 (CSB)

but those who trust in the Lord will renew their strength; they will soar on wings like eagles; they will run and not become weary, they will walk and not faint.

So we trust and hang on!

 

The middle of the month brought two of our favorite things to celebrate! Fathers Day and Claudettes birthday, which almost always falls on the same weekend.  An added bonus was we got tickets for the Friday night match of the Colorado Rockies vs Texas Rangers. Rockies won, which we all determined was a good thing. This year Jim’s brother Mike and his daughter Andrea joined us for the weekend and for fathers day dinner with Max, Blake, Tracy and lil’ Charlie too. Only son missing was Sam….he’s doing that baseball thing. While we were celebrating Dad at home, the Yardgoats celebrated their dad’s with photos of the players with their Dads on the big screen and on Social Media. LOVE this photo of Jim pitching to Sam. It’s a forever favorite. We had a lovely Fathers day meal and celebrated Claude’s birthday the night after. She turns an incredibly young 75 this year!

1 Thessalonians 5:18 (CSB)

give thanks in everything; for this is God’s will for you in Christ Jesus.

June also brought the fitting of a leg orthotic. Jim really doesn’t need it yet….that is one things I love about our Houston Care team….they are on things before we need them! There is no reason on earth that someone fighting ALS should have to struggle without the proper equipment and care….even if insurance is an issue or money is tight, the ALS Association of Texas (or any local chapter) has equipment and aids available on loan for those suffering from ALS. It took a couple of visits to the Orthotic specialist to get things just right and when we finally got the fit…it was off to shoe shopping for a shoe that would work well with the brace. We landed at New Balance and seemed to pick the first tennis shoe that fit….I could tell Jim was so uncomfortable with this purchase. It was another reminder of what we face. We are grateful to have the aids, but it is hard to let go, piece by piece of even the tiniest of independence. The brace stayed in the car for two weeks and made its debut in Hartford, Connecticut on our second visit to see Sam and watch some Yardgoats Baseball.  Experience from our May trip reminded us how much walking there would be as the stadium, Sam’s apartment and our hotel are all located downtown, so walking was the mode of transportation.

The first of trips out East to cooler weather were in our June and July Forecast, just in time for the Texas heat to really fire up!

We flew into Hartford on June 24 and were looking forward to four Yardgoat home games. We had great food, wonderful weather and special time with Sam. He even hit a home run while we were present! One of my friends and Miss America State sisters, Lorine Zdanowski, Miss CT 1985, lives in the Hartford area  and she and her husband joined us for a game and then the following day, treated us to a private tour of ESPN. Lorines’ husband, Mark, has worked for ESPN for years and made arrangements for us all to tour the amazing facility. Besides sitting at the Sports Center desk with Sam, the highlight was probably seeing the Baseball Tonight set. We also had beer or two after our last game at City Steam Brewery near the field and Sam’s condo. We were surprised to see them supporting ALS TDI with their Ales for ALS promotion. All sales of the beers affiliated with Ales for ALS give dollars for research to  www.als.net. This is a nationwide project…so watch out for Breweries in your area that support ALES for ALS! We all had a beer and toasted to a cure!

Psalms 20:4 (CSB)

May he give you what your heart desires and fulfill your whole purpose.

While heading home on Friday, June 29, I happened to purchase the wifi so I could use the internet on our flight…I was so glad I did because Sam texted us with exciting news! He had been named to the Eastern League AA All Star Team! This is Sam’s third year in the minor league to be given the honor of ALL Star and the second year he would participate in the Home Run Derby!

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July roared in with my solo trip to The Miss Texas Pageant and a lovely reunion with some of my closest Miss Texas sisters! Hard to believe it has been 34 years since being named Miss Texas 1984. Jim stayed home and went out to dinner with some of his close friends. So many of our friends and neighbors go above and beyond to check on us and make sure we have a dinner invite on the calendar every week! Love them!

There wasn’t much time to waste because we had to quickly plan our trip to New Jersey the next week to watch Sam at the All Star Game and Home Run Derby. We had to figure out how to schedule Jim’s Radicava infusions around being gone in the middle of a treatment week! We would only be gone two full days and can make up those two treatments on the weekend upon our return.

We couldn’t get out of town though without a Birthday dinner celebration for Blake. He celebrated his 34th birthday on July 7 and we had a lovely dinner in Frisco at Zaytinya. Claudette was with us as she was going to New Jersey too, to cheer on Sam. We got to hug and poke on lil Charlie too and hopefully gave Tracy a break for an hour or two.

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We all treated ourselves to first class tickets to Philidelphia and took a rental car to Princeton, NJ where the official hotel hosted the Allstar teams and families. The game was actually in Trenton, NJ, just 5 miles down the road. The Home Run Derby was so much fun and Sam was not only the crowd favorite but he blasted 13 HR’s in the elimination round, emerging as one of the two who would go on to the final round. They hit balls for 4:00 minutes straight, with a 30 second break at the halfway mark. He was edged out in the final round by Deivi Grullon, who won the Derby by one home run, 10-9 final. We were super proud of Sam and of course, thought he was the best!!

Day two, Claudette and I decided to take a tour of Princeton Univeristy and the shopping area close by. What an amazing campus! We felt like we were walking through England or Hogwarts in the Harry Potter movies. Jim stayed behind to rest and read before the All Star game that night. The game was uneventful for Sam and our team, the East lost the game, but it was pomp and circumstance and we all had a blast.

This brings us pretty close to present day. The day following the ALL Star game, Jim jumped right back into Infusion treatments, but the nurses were having trouble accessing the Medical Port. That meant they had to do an IV each day to administer the medicine. After several tries, Jim went to see Paul Stiefel to find out what was wrong. They determined it was blocked or clogged and would need to be surgically repaired. We are really missing the amazing weather of the northeast! Nearly every day since being home from New Jersey it has been 100 degrees or hotter!

So here we are today, back at USMD in Arlington. It is 108 degrees outside, but might be below freezing in this hospital! The surgery went great and they did not have to replace the port, but it did have significant scar tissue and inflamed soft tissue all around the area. They cleaned out the area and repositioned the port a little lower on his chest, stitched him back up and he is good to go. Thankfully, Jim’s final infusion was this morning, so now he has two weeks to heal before going back for 10 more days of Radicava. We are praying that this medicine will help slow down the ALS that is slowly creeping over Jim’s body and we continue to pray for all of those people and researchers looking for a cure. Looking good Jimmy!fullsizeoutput_2831

2 Corinthians 12:10 (CSB)

So I take pleasure in weaknesses, insults, hardships, persecutions, and in difficulties, for the sake of Christ. For when I am weak, then I am strong.

As of this post we are at $46,550 in our Team Hilliard Research Fund efforts benefitting ALS Therapy Development Institute.

Our page is www.als.net/teamhilliard

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!

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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.

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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.

Our Story…

Jim and I have talked about our plans for disclosure of something of this magnitude for quite some time. There is just not really a good way to divulge the heavy weight on our hearts. We are facing the biggest challenge of our lives. The fight to live. Facing a disease with no cure….one that would alter the course of our hopes and dreams. We decided that we wanted to become active in finding a cure and  be transparent in our journey with a blog on what we are going through and the challenges that this disease presents. It is hard to tell the story over and over and many people have heard rumors of different diagnoses. We are hoping that you will come along side us and most importantly offer your prayers for Jim and his health, for our boys and our family and that we will be given the strength and fortitude to meet this challenge head on.
The heavy truth is— Jim has been diagnosed with Amyotrophic lateral sclerosis-  ALS (aka Lou Gehrig’s disease). ALS is a progressive neurodegenerative disease that affects motor neurons (the nerve cells that control muscles) and causes muscle weakness, paralysis, and ultimately respiratory failure. Most people with ALS live 3-5 years after their first signs of disease; approximately 10% of people live 10+ years. There is no cure for ALS and there are no proven treatments; nothing you can do that has been proven to slow the progression or alter the course. It is progressive and relentless. He is currently taking the FDA approved medication (Rilutek or Riluzole) for “treating” ALS and it extends survival about 2-3 months.

November 2, 2018 The day ALS became our Story

It was a Thursday, I had my Women in the Word, Bible study and a lunch afterward before returning home. Sam was home and was busy getting ready for a weekend fishing and hunting trip in south Texas with friends, and we had a designer arriving to measure for new blinds in the front bedroom to cut the glare in to the main room and give privacy for our guest bedroom. Jim came home around 1 wearing his usual blue, office scrubs. But something was different. His face was drawn and he looked scared. I shook it off and when Sam had left, Jim came to and said, “I need to talk to you”. My heart sunk….I instantly knew something was wrong. But I NEVER expected to hear the words that came next.
“I’ve been having weakness in my right thumb. I began to notice it a few months ago, especially when swinging a golf club.” ( Jim is an avid and fantastic golfer!) After several months of worrying about it, he decided to go see a neurologist in Dallas to hopefully alleviate his fears. He saw Dr. Allan Martin at Texas Neurology and had EMG testing done. The doctor could not definitely say, but he feared that Jim may have ALS. The most dreaded, incurable disease imaginable. “They are afraid I may have ALS”, he said. My world completely rocked. I did not even know that he was having these feelings, much less than he had a doctors appointment. There is no way to be prepare for that kind of news. I knew what it was. The father to one of our sons baseball team-mates had the disease. We held each other and cried. We immediately began to pray that the doctors feelings were wrong. It wasn’t a diagnosis at this point. It was a “maybe”. We held onto hope that it could be anything else but ALS. The doorbell rang and I had to deal with the drapes. These are the things that keep us sane.

The next hours and days were like moving through mud. Things continued to be normal all around us, be we were not normal…nor would our life be normal again. We would have to hold onto our faith and find a new normal going forward.

We were grateful our son, Sam, who was living with us during the off season of baseball, was gone for the weekend, as we needed that time to grieve and begin to process this news. Jim went the next day for a brain MRI, then the following day for an MRI of the Shoulder, all the while hoping that there would be some indication as to why he was having muscle weakness. Sometimes head and neck injuries will cause similar symptoms. Jim was an All American High School football player, and played college ball at The University of Texas at Austin for 4 years. He also suffered a head on car collision while in medical school and broke his neck. It seemed fairly hopeful that those factors could be causing his problem. The tests were all negative for nerve damage. A second opinion was recommended by Dr. Martin and so we got an appointment with Dr. Sharon Nations at Southwestern Medical Center in Dallas.

We saw Dr. Nations on December 8, 2017 nearly a month after the initial doctors visit. Both of us exhausted and weak from lack of sleep and loss of appetite. She did the same nerve conduction tests and EMG ( needle testing to the muscles to show weakness.) She found additional weakness that Dr. Martin did not find. She also said she felt it looked like ALS, but still not definite. It is a hard disease to diagnose. She did throw out a hopeful diagnosis. Something called, Multi Focal Motor Neuropathy, and it is treatable! The only way to know if that is what you have is to be treated with IVIG, intravenous Immunoglobulin. We held on hard to this hope and agreed to do the treatments for 3 months, beginning January 2, 2018. Happy New Year.

 

IVIG was 4 days of infusion therapy at Moncrief Cancer Center, a really nice hospital setting and a great staff. The next month would be two days and then another 2 days a month later. So, we spent three months hoping and praying that he had MMN and not ALS. If Jim responded well to the medicine then that would be a good thing an he would continue to take the medicine and regain his strength.
We returned to Dr Nations on March 8, 2018 for a follow up. More testing of Jim’s strength in his hands, toes, arms and legs ( no needles this time!) and she said there was a little bit more weakness that wasn’t there before. By now we had been down this road several times. Each time hoping that the answer will be different, and each time we were disappointed. She came out and said. “I am sorry. I believe you have ALS”. The good news in all of this is Jim has caught it really early and it appears to be a slow progression. Dr. Nations prescribed Riluzole, the only drug that has been on the US market until now and slows the disease a little bit, and also began the process for getting him approved for a brand new drug called Radicava. This is great news! Radicava ( from Japan) was just approved in 2017 as the first drug in 20 years to slow ALS symptoms. The drug costs about 200,000 a year but fortunately Jim went on Medicare last November, his 65th Birthday, and it is mostly covered. We are currently working through the process of starting the Radicava Medication. It is also an infusion, but only 1 hour each day and for 14 days in a row, with 14 days off. Repeating monthly. Is this the new “normal”? I forgot what life was like before the idea of “ ALS”.

How on earth do we tell our sons. Yes, they are grown young men, but age does not alleviate the pain from such a harsh message. Blake, Jim’s oldest and his wife Tracy, expecting their first, long awaited child in March. Max, who is in College full time and working on a Journalism degree, and our youngest Sam, a professional baseball player for the Colorado Rockies, having an incredible year and a Top 30 ( #12) MLB prospect working so hard to make it to the “Show”. It seems so unfair, but what would really be unfair is not to include them in this journey. The truth is….we don’t know how or when this disease will progress and with the new drug Radicava, and the even newer drugs on the horizon, that we are desperately trying to fund and bring awareness too….we have hope.

Since we first reached out to our family and close friends to tell them the news and to ask for prayers, we have a new appreciation for just how valuable this support means to us! You know who you are:
Dinners, prepared food, and efforts to ease our first treatment with IVIG.
Daily words of encouragement via text, cards, email & phone.
My best friends that I can call, any time, night or day and cry or vent. God I need you.
Many references and advice from friends who knew or know someone who had/ has ALS.
People who heard something was wrong and took the time to reach out and ask…and then pray.
Personal friends in the ministry who have made it their mission to check on us daily and weekly.
The people I have come to know and rely on who are walking the same path we are walking. Priceless.
Neighbors who know and quietly try to help out in so many small ways without making a big deal of things.

I know this is hard. Friends, family, even acquaintances don’t know what to say or how to act. We get that. We’ve been there! There is nothing to be said or done on anyone’s part that will change things. But Lord, how we appreciate the encouragement and prayers that have been offered in so many different ways. That is the best and most important thing we need right now. Prayers. Prayers for healing, for strength, for answers, for grace and mercy, for clarity, for peace and for protection over our family as we figure out how to maneuver a disease with no cure. To pioneer trials and methods that may do nothing to help extend Jim’s life or to fight for the hope of the one thing that could save his life, or others who suffer from ALS . What do we need to hold ourselves together in the midst of this storm? We need your prayers more than anything. Thank you to those who offer them diligently. We also need funding for a cure.
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Accepting our Challenge.

I don’t want ALS to be part of our life story, or our sons’ life story, but without our permission, it has become our story, and so….we have to make it a Great Story!

#EndALS #ALSTDI #strikeoutALS #TeamHilliard

So what Charity?

Our family’s preference is the ALS Therapy Development Institute, the world’s foremost drug discovery center focused solely on ALS. Its innovative science and cutting edge approach have resulted in the identification of AT-1501, a promising treatment candidate, which will advance into Phase 1 clinical trial in 2018. ALS TDI also pioneered the ALS Precision Medicine Program, the world’s premier program and partnership with people living with ALS to discover additional potential treatments.

These funds go directly to ALS.NET Research.

Now, Jim needs us. He needs you. Those who live with ALS need you.

Thank you for your donation to ALS.NET

www.als.net/teamhilliard