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!
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…
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!
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 Yard Goat 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!
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!
Miss Texas Reunion
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.
We all treated ourselves to first class tickets to Phillidelphia 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 University 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!
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