While in Seattle for three months, I really enjoyed not driving. Traffic there was insane and I just didn’t have the head space to become acclimated to the busy streets filled with honking cars, speeding bikes and distracted people walking. This is nothing against Seattle, as you will find this identical issue in all overpopulated cities across the U.S.
On the other hand, I was excited to be back in Michigan driving in a much quieter setting. And although I am not fond of driving Dave’s super-huge Silverado, I do it because he enjoys riding in it. He is still not allowed to drive. Preparing to drive it for the first time in months, I happened to be filling the back seat with cheerful grandchildren who Dave and I were taking to Emilee’s softball game. Heaving Everett, who is two and a half, into his car seat, he remarked, “Mimmie, super cool truck.” I laughed and replied, “Well, this is Bumpa’s super cool truck, so make sure you tell him when he gets in.”
Seconds later, when everyone was buckled in, I asked Everett to tell Dave what he said earlier. Instead of telling him he has a “super cool truck,” he said, “Bumpa, I wuv you!” It’s moments like that when you realize the fight is bigger than imagined, and for reasons you don’t ever want to forget.
Dave had his 10th bone marrow biopsy today. We hope to find out if he is in remission sometime on Wednesday. It’s possible that this Fourth of July fireworks will be a celebration about some freedom from this exhausting and resilient disease.
And as we wait for the Karmanos call, Dave continues to be my passenger. Today he washed his truck and even dried it by hand. Men and their super cool trucks. I will never understand it. Soon, when the day comes when he can drive it again, I think our celebration will be bigger than any Fourth of July we’ve ever seen.
There’s nothing like a head-first dive into home and watching as the baserunner swipes the corner of the plate with his left hand. The barrel-chested catcher set up perfectly and the bullet from the right fielder to home was on the money. But the long throw couldn’t beat the runner to the plate. His teammates bombarded him as he headed into the dugout. His hands are up high-fiving and special handshakes greet him as he navigates his way to the dugout. That’s the way I see the game winning run.
Dave, on the other hand, sees it differently. As a player, the ultimate game-winning run is a walk off oppo jack deep into the lights. The crowd goes ballistic as the player rounds every bag. He wildly pumps his arms in the air. He is covered by players the moment he stomps on home plate as the scoreboard reflects a true donneybrook.
There’s no place like home.
We returned home last Saturday to our quiet place on the lake in Hell (Michigan). Who knew this Hell could be so peaceful. We have been to Karmanos two times this week and Dave’s counts have been doing exactly as we had hoped. The WBC and ANC are nonexistent, as expected, when Besponsa (or Inotuzumab) is administered. The LDH is closing in on normal, and there is still no pain. We will wait for the next bone marrow biopsy to determine if these drugs could be the new Keystone Cops. If the two treatments can work as well as Trammel and Whitaker did years ago, I’d say it would be hard to recall two Detroit Tigers who worked so well in tandem.
The best therapy for both of us is coming back to Michigan and being with our family and friends. One can’t imagine how difficult it was to be so far from home. Unfortunately, we haven’t been able to visit with many because his counts are so low. However, knowing we are now closer to those we care about and love is a blessing.
If you followed The University of Michigan baseball team in the last couple of weeks, you watched one of the last four teams in the country make it into the NCAA Regional. The 17-6 drubbing against Creighton June 3 propelled the Wolverines to an eventual best of three series in the Super Regional against the No. 1 team in the country, UCLA. In that Super Regional, each game increased with intensity as UM became tougher and more resilient. Eventually, the Wolverine prevailed in Game 3, 4-2. The win sends UM to Omaha for the first time since 1984 to play in the College World Series. Then and now, those men are learning a very important life-long lesson. Attitude will always be the biggest part of any game if a team plans on going very far. Going above and beyond one’s expectations is the only way to succeed. And, working together for something bigger than themselves will always outweigh individual play.
Last week, after we heard there was no hope in our search for remission, our doctors walked in with a more positive attitude the following day. Continuing to research the drug Besponsa and administering the first dose, the counts and inflammatory markers were making dramatical changes. What the doctors saw as a remedy that would allow us to make it home, we hoped it was much more. Optimism was building and our “win it all” attitude was back. Going home was postponed though. They needed to keep Dave in the hospital for close observation for another week, and the staff planned to administer one more dose. Thanks to The University of Washington Medical Center, the $60,000 per dose infusions were gratis. Note: Surprisingly, Dave was in no pain yet.
The inflammatory markers continued to drop and showed great promise. We walked two miles a day around the seventh floor, whether he wanted to or not. He drank high-calorie shakes, ate deep fried chicken wings and waffle fries several times. I know what you are thinking. He would have never done that in the past. But in his present condition, he was willing to do whatever it was going to take to make it home. He needed to get stronger, gain weight and wait for his counts to recover. But, late on the fourth day after the infusion, Dave seemed off and not himself.
He dozed on and off through the seventh and eighth inning of the University of Michigan’s big win over the Bruins. He did see the final inning, and couldn’t be prouder of UM exceeding all expectations. The following day, when we should have been celebrating that win, we experienced our worst day ever. Dave was confused, restless and unable to focus. He could not recall the day, the year, the season, the city we were in or even tell you what time it was on the wall clock. In a matter of three days, he dropped 19 pounds. Frightening. Toxicity was in high gear. Still important and puzzling to note -no pain.
Looking back to May 8 when the CAR T-Cells were infused, we carefully watched for side effects for the first 7-14 days. There was absolutely no CRS or neurotoxicity observed and the only side effect he experienced was fatigue. Oddly enough, 33 days after that infusion, when we had all but given up, the team suspected a late appearance of CRS and neurotoxicity. Not only unusual, it was unheard of. Tests were performed to confirm the diagnosis. The CAR T-Cells showed up late to the game. Very late. With this new information, tandem treatment might be the turning point for this awful disease. Imagine how many people this may help in the future. Exciting.
The two agents seem to be teaming. Now, 35 days into the game, the doctors are hopeful that the CAR T-Cells are doing what they were intended to do. Maybe the burden was too heavy for them in the beginning. Maybe the Besponsa gave them the kick they needed to begin to work. They are unsure at this time because both treatments are still so new. One thing is for sure. We are still praying for a miracle and complete healing.
Just like the UM baseball team, the chances of winning at all costs are increasing every day. Dave’s counts continue to improve. He is still pain-free and gaining strength and we are preparing to come home on Saturday. The doctors are hopeful that the CAR T-Cells and Besponsa continue to compliment each other as they batter the cancer from both dugouts.
It’s not how you are inspired, but more importantly what you do with it. When I recall all those who have inspired me, I realize that those became opportunities for me to become a better person.
Today I was thinking back to all those who have been so giving and so thoughtful to Dave and me. I wish that I could thank each and every one of you who has had such a profound affect on us. I have this intense desire to repay all of you for your generosity, but I’d be so afraid that I would leave someone out. Instead, you have inspired me to do for others what you have done for us. When I talk to others here at the hospital who are struggling, I ask who I can pray for. In that moment, I say a prayer for not only the sick person they care for, but the caregiver too. You have been doing that for us all along. And yesterday, I was standing behind a nurse on our floor who was buying coffee for her and two other people. All three are involved with providing care for Dave. I slid my card to the cashier to pay for their coffee and my own. She actually got tears in her eyes, and you can’t imagine how it made me feel to treat these three caregivers.
My mom has always been an incredible caregiver to so many. From as early as I can remember, she cared for four active children, my sick father and also worked full time. Later, she cared for my youngest brother for almost 30 years, who was wheelchair bound since he was 22 years old. She and my step-dad have been caregivers to us and our family, even from thousands of miles away. With absolute certainty, I am sure that my caregiving instincts are inherited from my mom. She inspires me daily.
But truly, this is about how Dave has inspired me in countless ways. There is probably a reason most nursing shift changes come with a story of how nurses want to have Dave as their patient. He has given some of them different names, as most of you know that’s what he does. He’s kind to each and every one of them, never tries to over-work them and inquires about who they are and what they like to do. So it is a real tribute to Dave, when some nurses aren’t assigned to him, that they still stop by to check and see his progress.
Is it the little things he does that inspire me? Maybe it’s how I watch how he treats others, how he loves and cares for so many people, or that he thinks of others before himself. I can’t tell you how many times he has said, “I am so glad that this is happening to me and not to you, or to any of our children, or to any of our friends. “
Maybe it’s the big things he does that inspire me. He is so faith-filled and a God-loving man. We stand united in our journey to seek and to understand our purpose. We have not waivered even through the most difficult times. It just brings us closer to Him and in return to each other. As a man of integrity, he will not back down from his strong convictions of right from wrong, never meaning to offend others, but intending to be steadfast and true to who he is. And, his never lose attitude. If there’s one thing that has inspired me to be a better person, it’s to watch him fight this fight.
So now I ask this question directly to you. How has Dave inspired you? Was it with his words, something he said or maybe what he did? Maybe it was even what he didn’t do. Put your finger on what it was and how it affected you. Hopefully, you have one or two ideas swirling around in your head.
It’s not how you were inspired, but more importantly,
I was thinking that this was going to be the easiest post to write, or maybe the most difficult. I was hoping that I would have clever thoughts running through my head — baseball quips if you will — that would weave my thoughts and good news together. I was wondering if this was going to be the time that I would just hand this over to Dave and say, “Here, you write it this time.”
I know that none of that matters now, as this update does not have Dave sliding head first into home. It does not have him clearing the bases, pumping his fists in the air, in “Gibby” form. It is not a walk-off, a grand slam, the game winning RBI.
Last week, Dave’s counts provided doctors with a glimpse of changes happening, but it did not “present” what the issues might be. As we waited and watched for something to occur, he developed a fever on Sunday while he was receiving a blood transfusion. Concerned that is was a reaction to new blood, they halted the transfusion. He was admitted to the hospital when the fever did not subside. Fearing that the high temperature was an effect from the disease returning, the bone marrow biopsy was rescheduled from June 6 to June 3. On Monday, he had his ninth bone marrow biopsy. We anticipated that the results would inform the doctors what their next steps should be.
CAR T-Cell therapy was not a success and the leukemia has returned. The CAR T-Cells are still present and working, but they simply cannot combat this monumental task alone. Another cutting-edge medication, Besponsa, was infused yesterday, in order to avoid a possible pain crisis on our trip back to Michigan. Contrary to what the counts lead us to expect, Dave is in no pain at this moment. Some patients have gone into remission after several doses of this anti-leukemia medication. But like most powerful cancer drugs, it has a lifetime limit, and this drug is restricted to six doses.
What is amazing is that our team of doctors are using two treatments in tandem, CAR T-Cell therapy and Besponsa. Dr. Geoffrey Hill informed us today that, “We feel these two novel agents may have never been teamed together until now.” A hopeless verdict on Tuesday has been overturned and gives us hope that this could be groundbreaking and miraculous.
We have never hidden our faith, hope and trust in God. He is the Great Physician. He is the ultimate healer. He has written our story long ago. And, we believe that miracles do happen. So now we pray that through us, He looks favorably upon us and presents us with a miracle. We ask for complete healing and an end to this horrible disease.
Please join us in that prayer.
It is time for us to come home.
Space Needle in Seattle – April 26, 2019
Update:
We will be staying another week in order to receive an additional infusion of Besponsa. Dave’s team of doctors feel confident that after two infusions, he will be ready for the 4 1/2 hour flight home.
The scoreboard reflects a battle of the arms – a good ole fashioned pitcher’s duel. Goose eggs dot the scoreboard and hitters are frustrated, as each pitcher is throwing his best game yet. The runner on second was stranded, as each additional inning stretches this nail-biter.
Dave has had minor side effects, slowly gaining ground, but not able to move forward on the base path. The determination and fortitude has never wavered from either him nor his teammates. In fact, the bench has only become stronger and more supportive.
“It’s hard to beat a person who never gives up.” – Babe Ruth
As this game continues through the weekend, Dave is holding nothing back. His counts are showing that the struggle is not over. Whether that means that the CAR T-Cells are working extra innings right now to conquer cancer or the leukemia is still lurking, we are in the wait-and-watch mode.
Thirteen in 6, 10 in 10 and 6 on the day. What do these all have in common you ask? Progress. We are making progress in Seattle, and that excites us more than ever in anticipation for our return to Michigan.
Dave is in his 14th day post CAR-T Cell therapy infusion. We have 14 more to go until we reach the 28th day for the bone marrow biopsy. The June 6 biopsy is just around the corner to determine the success of this clinical trial. When the research team asked if he wanted a voluntary biopsy around the mid-mark just for research, the answer was short and quick. “No.” After 8 painful biopsies, Dave did not want to go through the procedure unless it was mandatory.
Progress can be slow at times and hard to measure, but walking out of Seattle has always been at the top of the list. While in the hospital, Dave and I walked 13 miles in 6 days to complete the half-marathon. Today, we have walked over 6 miles. Progress.
A determined path to 28
Finally, and critical to Dave’s continued improvement, is gaining weight. He put on 10 pounds in 10 days. His appetite has improved, and I am coaxing him to eat more and snack all of the time. At night, I am always encouraging him to have Häagen Dazs for a snack because of the high calories. But, two nights ago he questioned, “Do I have to? Please don’t make me eat anymore.” Who says that? Dave did.
If all goes well tomorrow at the clinic, we will have a long weekend off. Dave’s counts have been solid – improvement on four continuous days – and he hasn’t required a transfusion in 11 days. This is definitely progress. We are halfway there. Fourteen days post CAR-T Cell infusion and 14 more to go.
A ringing double off the left field wall and the runner strolls in standing up. He barely broke a sweat as he quickly rounded first base and never pulled the reins until he reached second. This is thanks to a team of doctors and nurses, and also to the perseverance of one tough ball player. Dave was released from the hospital today and is able to go back to Pete Gross House, the apartment complex for cancer patients. His determination and “win-at-all-costs” attitude has made this possible. And, at this point, he is standing on second base hoping to cross home plate after his June 6 bone marrow biopsy. We feel he is at the halfway point.
The moment he was able to walk and move around the 7th floor, he was on a mission to meet three goals. The first goal was to be at The University of Washington Medical Center the minimum of seven days required by the SCCA staff. The second goal was to regain some of the weight lost from his previous hospital admit in the beginning of April. And the final goal was to walk 13 miles around the 7th floor of the hospital in order to receive the Half-Marathon Finisher award.
Dave met every goal he set out to achieve, which should come as no surprise to anyone. Gaining weight has been, and will continue to be, the most difficult. At 170 pounds, he has a long way to go.
The support you have shown has been incredible with so many people generating encouragement in so many ways. The 7-day prayer challenge was successful, but if you are inspired to continue through the remaining 21 days, I am sure that you will feel a continued sense of closeness with Him. Finally, I want to give a huge thanks to the Jefferson High School staff for your constant communication, love and support for your long-time colleague. You have walked with him every step of the way.
Inspiration for my blog posts comes quite easily to me from the little things in daily life. You see, inspiration is all around us. You just have to stop and be still sometimes to notice. Often, it’s more obvious than at other times, but occasionally, it is staring you right in the – well – ears.
This morning I could not get a song out of my head. The song just kept continuously looping. Does that happen to you? It happens to me all of the time, especially at night when I’m trying to sleep. Well, this morning I was humming along and kept singing the chorus over and over again because it’s so inspirational. After 30 minutes, I said to myself, “I need a different song in my head. I’m driving me crazy.” I turned on Pandora and saw that the last station I listened to was country, but today I really wanted to continue my morning the way it started – with Christian music. Before hitting the arrow in the top left corner to switch stations, I was stopped in my tracks with the first five chords. And then, I paused to enjoy the moment. The very same song that had been running through my head all morning started to play. I stood still and listened to every lyric of H.O.L.Y. by Florida Georgia Line. This may give you chills with the irony of that moment, but it just made me smile in affirmation.
What a glorious moment to feel such love in such an intense way. I felt that that dedication on Pandora was for me. But it was for you too, because it inspired me to share it with you. Just as I am about to share more wonderful news. Dave’s call early this morning is what initiated the constant melody in my head. It looks like we are right on schedule for Dave to be discharged from the hospital on Wednesday. That was music to my ears.
Our team of doctors is extremely pleased with his progress, and even more encouraged that he has not experienced any intense side effects that could delay progress. Once released from the hospital, we will continue to report to the SCCA for daily monitoring and blood counts. The seven watchful and prayerful days are ending soon if you accepted the prayer challenge. Once released, we hope that you continue to pray for complete healing. With the bone marrow biopsy still scheduled for the 28th day following the infusion, we ask that you be vigilant and keep Dave in your daily prayers.
Just like the song, which moved me to write this update today, you too should be inspired by the outcome of your constant prayers. How can He not be inspired by all of you and what you have done for the Tag Team?
Today, Dave is being honored at Saline High School’s baseball diamond before the doubleheader against Dexter High School. Saline youth baseball teams were invited to today’s game in support of Dave’s fight against cancer, and for cancer awareness as well. Coach Joe Welton and his friend Brian Sayers painted the cancer ribbon behind home plate. It is apropos that the finishing touch on this whole day included adding No. 28. to the design. Coach Welton planned this day around a man he admires and a game that he loves. We tip our hat to him and for the abundance of support he continues to generate for Dave and our family.
Our grandson, Easton Sontag, threw out the first pitch of the game. What an honor for the Sontag family. Watch here.
Finally, the following is an update of the CAR T-Cell infusion process. Thus far, the side effects have been minimal, thanks to the low burden of cancer entering Wednesday’s infusion. We are on high alert, as we wait for anything to come our way. It is like watching paint dry. Or maybe it’s like sitting in bumper-to-bumper traffic waiting for it to finally open up and start moving. Better yet, it’s like the grass we planted last year with ten long days of waiting for results. Most importantly, I hope you are thinking what I am thinking. Four days into the prayer challenge, which was posted on Tuesday, I tip my hat to the One above Who is listening and responding to all our prayers.
Tag Team 