Since arriving in Seattle on Saturday, we have yet to adjust to the time change. By our standards, we’ve gone to bed early every night, only to be wide awake by 5:30 – 6 a.m. I have fallen back to sleep, but Dave has really struggled with the new schedule. Adding to that, today is a big day. A bone marrow biopsy is on the slate to see how active the cancer is. As I pointed out in previous blogs, leukemia must be at least five percent active for SCCA to proceed with CAR-T Cell therapy. If he is in remission, he is ineligible. In addition to the biopsy, he will undergo a lumbar puncture, as they will test his spinal fluid for evidence of leukemia. Doctors will also do intrathecal chemo, which has been done in the past as a preventative measure. Intrathecal chemo rarely goes well for Dave, so he was sleepless in Seattle for good reason.

Dave’s blood counts have been holding steady, although he did need a blood transfusion yesterday. The added red blood immediately vaulted his energy level. The doctors have been extremely positive and have precise plans for him returning to remission. They have emphasized that each case is tailored to the patient’s needs and side effects. The timeline is broad so as to accommodate even the tiniest setback. Of course, Dave plans on zero setbacks, the shortest stay in the hospital and returning to Michigan by mid-May to watch baseball and enjoy spring and the warmer weather.

Contrary to past springs in Seattle, the weather has been extremely beautiful. The temperatures have tipped into the 70s and the skies have been cloudless. We walked along the water and enjoyed watching boaters, families with children, and people sliding out of work early to soak in the sun. We have spent as much time outdoors as we can knowing it will be short-lived in a normally cool and rainy Seattle.

I will update the blog on Saturday with the results of the bone marrow biopsy. For now, we hope to sleep better tonight as we wait for our next steps leading to remission.

Dave received this card and gift from Peanut (you know he gives everyone a special name) and the card could not have been more perfect. Sweetness. Strength. Doesn’t crumble. Fighter. Lots of friends. This is a recipe for “One tough cookie.” He is all of this 10-fold, but is really focusing on No. 3 – a fighter who’s too busy kicking butt to look back now. He’s going all out and determined to win this battle, one day at a time. He is one tough cookie. 

March 18 will mark the start date of the next part of our journey to beat ALL. We will leave for Seattle today and hope to rest on Sunday. After selling his mom’s house and moving her into assisted living this week, we are exhausted. Next week’s schedule is packed with consultations, testing and another bone marrow biopsy to confirm that active cancer is still evident. If so, the cell collection will take place March 25. The cells will be shipped to Kite Pharma and will be engineered into CAR T-Cells. Two to three weeks later, the CAR T-Cells will be infused and Dave will be under close surveillance in the hospital for at least seven days.

If all goes well, he will be released but confined to sterile living conditions. Still expecting to report everyday to the clinic, he will be closely monitored and receive treatments as needed. We have been informed that the initial process will take at least two months. Seattle Cancer Care Alliance will determine when it is safe for us to travel back to Michigan for a few weeks of respite. However, routine monthly check-ups will require us to return to Seattle every month for the first six months. Currently, Dave is feeling pretty well and definitely ready for this challenge. He has put on about ten pounds (not from eating cookies). I will update the blog bi-weekly so that you can continue to follow his progress. Remember, team. We’ve got this.

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You have all been patiently waiting to hear news from our visit to Seattle. It’s been a balancing act between giving you any sketchy information or giving you etched-in-stone information. All the details are not in at this moment. So, I will try and deliver information that is teetering in the middle.

Dave has been accepted to join the Zuma-3 trial at Seattle Cancer Care Alliance. He is only one of twelve who has been selected to participate at SCCA. With an 80 percent anticipated remission rate, this is far better than any other study in which he may be eligible. It is the CAR T-Cell therapy I alluded to in the last blog post. Also important to note – this study is far too new for the research to examine a cure rate.

We received a tentative date of March 18 to begin the process to extract cells and engineer them to become cancer-fighting cells. Although we need to relocate to Seattle for at least two months, the opportunity to participate in cutting-edge medicine is exciting. However, it is quite daunting when one studies the phases of immunotherapy. Because of the intensity of the treatment, I will be the sole caregiver 24 hours a day during chemotherapy, cell infusion, and for several weeks after the cell infusion.

Once the date is confirmed, Dave will discontinue all medication that he is currently taking in order to prepare for the cell collection. Again, this becomes a balancing act because we need the cancer to stay active for the clinical study, but still stay under control. And if he miraculously goes into remission in the interim, he will be ineligible for the study. So, we will be walking a tightrope for the next few weeks. A bone marrow biopsy prior to the cell collection will determine if we walked the medical tightrope successfully.

Baseball used to be a game played with wooden bats, Converse tennis shoes and kids who gathered from the local neighborhood. The backstop was concocted from a makeshift fence. The bases were either paper plates or pieces of cardboard that never stayed in place. Usually, we only had two or three ratty baseballs, so if we hit the ball in the ditch or creek, we had to run and retrieve it quickly before it became waterlogged. I remember that there was only one game on television to watch on those Saturdays, so whatever the Game of the Week was, that is what we watched. And when the neighborhood boys came knocking on the door looking for players, I’d ask, “Can I play this time?” And they’d always say that I could only play if they were short a player. Much to my chagrin, I wasn’t asked to play very often.

Times sure have changed, haven’t they? Not only have we seen a plethora of changes in baseball, but also in the medical field as well. It is amazing what we are about to share with you, as our journey to find a cure for Dave continues.

Dave and I are flying to Seattle in just under two weeks. We will be consulting with Dr. Cassaday at Seattle Cancer Care Alliance (SCCA) to discuss CAR-T Cell Therapy. If Dave is eligible and the timing is right, he will undergo a procedure where his T-cells – a type of white blood cells that destroy bacteria, viruses and cancer – are separated from his blood. The cells are engineered and duplicated to become cancer-fighting cells, called CAR-T cells. They are grown in the lab until there are millions of them. Then, they are infused back into his body to recognize and destroy any lingering cancer cells. This clinical trial is a type of research study that tests how new medical approaches work in people. With SCCA being the premier location for cancer research, we feel this is his best opportunity for a cure.

Cancer research has come a long way. We feel fortunate that 23 years ago Dave was cured of Non-Hodgkins Lymphoma by using a similar treatment that is still used today. We also know that he received excellent treatment for ALL that quickly put him into remission. This allowed him to receive a bone marrow transplant October 10. His BMT could not have gone any better than it did. It was textbook, but the dreaded disease returned. We are now about to meet this new challenge head-on and hope he is eligible for the CAR-T Cell Therapy. I equate it to him becoming a bionic man. From a wooden bat to an aluminum bat and from Converse high tops to Nike cleats, we are about to attack this game in a cutting-edge way.

I know some of you could just hear me break out into song when you read that title. I still do that even in the most challenging times because singing makes me happy. I’ve been listening to a lot of inspirational music lately because it reminds me of all that is good. It reminds me that even when you feel beaten down it is your choice whether you keep going or not. It reminds me that there is a plan that only He knows.

Our plan is to fight again and get Dave back into remission. He is now on a new medication called Ponatinib. He will receive Round B of chemotherapy and will have a bone marrow biopsy in three weeks to determine if this plan succeeded. We will travel to Karmanos three times a week and hospital stays will be determined by his counts and overall health. Blood and platelet transfusions are inevitable. We will watch closely for any changes and respond accordingly.

Our team is growing larger and stronger and we are fortunate to have so many teammates “pulling the rope.” Day-by-day, even hour-by-hour, we will conquer cancer and kick it to the curb.

Being tough reminds me of a story that Dave emphatically shared with the Saline baseball team. It all started when he felt that the team needed to become more mentally tough when the competition intensified during practices and in the games. He always told his players that they had to practice at game speed if they were ever going to compete in the games at the ultimate level. So, he met with the squad with three bags full of candy and told them a story…which will be abbreviated in this blog.

The first bag of candy that Dave brought out contained Hershey’s Kisses. As he walked back and forth throughout the dugout, he handed each player one Hershey’ Kiss. He asked the players to open the candy and hang on to each piece for a second before they ate it. The chocolate began to melt in the players’ hands before it entered their mouths. Dave equated this candy to the players who melt when the pressure is put on. He gave plenty of examples of situations when players shy away from tough situations. It’s easy to play when the pressure is minimal. It’s tough to play when the heat is turned up and then players begin to melt.

The second bag of candy contained M&Ms. Dave handed players a Halloween-size bag and asked them to eat them. As they were stuffing them in their mouths, he compared that type of candy to the player who is tough on the outside but soft on the inside. He used examples like the pitcher who attends the big local baseball showcase in the summer and hits 92 on the radar. Scouts and college coaches rave about the velocity. They may even place that pitcher high on their recruiting list or their draft board. The following spring, that same pitcher throws a bullpen that is electrifying. However, as he takes the mound the next day against the No. 3 team in the state, his 92 MPH fastball starts to lose steam as pitch after pitch misses the strike zone. He walks the first three hitters who he faces on 10 pitches and is removed from the game. Tough on the outside and soft on the inside.

The third bag of candy contained Jolly Ranchers. As Dave moved throughout the dugout, he handed each player the candy that is hard as rock on the outside but tough to break down on the inside. As the players found out, the Jolly Rancher took forever to crack. Dave explained that the Jolly Rancher-type of player practices at game speed. He takes his same approach to the field the next day for his first game. He relishes the tough situation. He can’t wait for the heat to be turned up. That hitter peeks down into the opponents’ pen before the game and becomes excited to realize that the pitcher coming to the mound is really that No. 1 recruit from Oregon State. In his first at bat in the game, the hitter drives an 0-2 pitch in the left-center gap for a hustle-double. He slides into second base and wipes the dirt off of his uniform. The lead-off dirtbag is tough on the outside and tougher on the inside. A true Jolly Rancher. 

Dave only has one speed – game speed. Thursday and Friday were rough days – mentally and physically – and it was understandable that his speed was similar to a tortoise. On Friday, he ventured out of bed after two rounds of chemo and walked two laps around the tenth floor. It was shaky and slow, and his nurse and I agreed that was all that he should try for one night. On Saturday, he lapped 20 times and on Sunday, he cruised 34 laps, which is over two miles. He forced himself to move, knowing he has to “walk” himself out of Karmanos again. My take – a true Jolly Rancher.

With seven rounds of chemotherapy complete in the last four days, and intrathecal chemo tomorrow, we will attack this one day at a time. We meet with our oncologist at Karmanos on Wednesday to hear what the plan will be moving forward. In the meantime, know that we feel the love and support from so many people. We thoroughly appreciate your daily prayers and sincere concern.

If I were to have written this yesterday, it would have been in total disbelief, despair and doubt. One week after informing our deep bench of supporters that we hit a milestone, now I must give you news that we have been dealt a bitter blow. Not only are we in a rain delay, we are starting the game over with a new pitcher.

Leukemia has returned and as Dr. Uberti put it, “is very aggressive.” Our bone marrow transplant specialist is turning the new game over to a hematologist, Dr. Yang. He will begin the chemotherapy process today, and it will mirror the challenging rounds of chemo Dave endured last May through September. Dave will be in the hospital for long stays as his body is once again battered with powerful poison.

Yesterday, I’d say the news felt like the day we lost Justin Verlander to Houston. Disbelief. How could the Detroit Tigers really trade our beloved JV? Despair. How will we ever replace him? Doubt. How will we win without him?

It is 4 a.m. as I write this, and Dave is finally sleeping. The combination of pain medication and Tylenol is taking the edge off. The intense discomfort he has been experiencing since Sunday is not from overdoing it, but from the leukemia multiplying and dividing. Again, like last spring, his back, groin and hips are the source of pain.

And again, after the disbelief, despair and doubt have dissipated, we will begin this day with the faith, hope and courage needed to win this game. Continue to pray, as I know you will. Send messages filled with love and humor, as you have in the past. And keep following our game, as we step to the plate once again, to start our new hitting streak. We got this.

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It has been 100 days since his October 10 “birthday.” That fall, sunny date marked the day when Dave received his bone marrow transplant. Today, we have made it to the 100-day mark without a single readmittance to Karmanos. Despite the subjectivity of 100 days, hitting the century-day milestone is important for several reasons. It means that even though GvHD has been evident, the donor’s bone marrow still likes its new home. The GvHD (in the form of a slight rash) is responding to treatment. In addition, it means that even though Dave’s kidneys are being watched carefully (caused by the BMT rejection drug), nothing is emerging to force a return to Karmanos’ 10th floor. His blood counts have continued to hold steady, which means that the risk of infection has been mild. Finally, and most importantly, it implies that the immune suppression medication can begin being tapered, which is really good news. We have realized that every time that drugs have been pulled off of the list, the better that Dave’s mental and physical condition has been.

Dave is gaining strength and feeling quite a bit more energetic. He is taking daily hikes in the woods. He is back doing resistance band work, light weights and med ball workouts. He even jumped rope on Tuesday. Crazy – I know! He is eating better but is still under 180 pounds – mostly because he is back to exercising and burning calories. He is even regaining his facial hair – which is kinda sexy!

Dave is also driving occasionally now, which relieves me of chauffeuring him everywhere we need to go. Can you imagine not driving for over three and a half months? If nothing else, it is a strong mental boost.

After 100 days, life is good. For that, we have so much to be thankful. For now, we must still continue his weekly visits to Karmanos. We must continue to monitor the GvHD and be under careful watch as we subtract the drugs on his daily list.

The best news is we feel that we have turned a proverbial corner. That’s really good news!

Most importantly, Happy New Year! We hope that 2019 will be filled with blessings, dreams fulfilled and healthy days. Today seemed like a good day to bring the new year in with the latest news. Many of you have been asking if you have missed an update, or if I have decided not to update the blog anymore. That has not been the case, although – for good reason – I have placed the blog on the back burner for over a month. 

Spending years in the dugout with Dave and keeping score for just about every team that he coached, I fell into a pattern that most ballplayers learn at a very young age – superstition. I wore the same Ked’s baseball shoes that witnessed hundreds of wins…and a few losses. I donned  baseball earrings and had my favorite sweatshirts that I always wore. I would bring enough bubble gum to make it through five innings. I never broke out the gum until the second inning. I’d have two bags of red licorice, which were also simultaneously opened with the gum. I used the same mechanical pencil for over 10 years, and I was quite superstitious when scorekeeping switched over to an iPad. I was afraid it might do something to the “wins” column.

So, when we hit a three-week roadblock in December, I didn’t want to dampen the holiday season with news of little progress. Dave had a poor appetite and found it physically difficult to eat. He was losing weight and ended up needing a biopsy to rule out GVHD (graft vs. host disease). Sometimes, the graft (the donor) doesn’t recognize the host (Dave) as being friendly. In fact, the graft sees one’s body as a “threat.” We knew that reaching Day 100 without any complications was an important milestone. I sure didn’t want to jinx reaching Day 100 by updating the blog and sharing the possibility of GVHD.

Just before Christmas, we received news that the biopsy was negative. Dave’s blood counts were on the rise, and we were given two weeks off from our next Karmanos appointment. I certainly didn’t want to jinx all of that good news since I never shared the roadblock. By December 21,  we had all three of our kids – and their families – home for Christmas. Things turned around and Dave felt like eating again. We had a wonderful holiday filled with special moments with our family.  

On January 1, a rash began to appear on his back and stomach. Now, it has spread to most of his body, sparing his lower legs and feet. Today the doctor confirmed that it is GVHD, and he prescribed a powerful steroid. It is not uncommon at this point, but we did hope to avoid GVHD altogether. This is just one more challenge to overcome. 

Clearly, we would not have avoided this bump in the road by updating the blog in December. However, superstition got the best of me. Day 100 is just around the corner, and I will bring you the latest update on that special day. We are anxious to put a “W” in the standings.