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.
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