Stepping up to the plate

The hitter comes out of the dugout with a methodical and confident walk to the plate. His clean, crisp uniform is hanging loosely, but proudly, on his thinner than usual body. At first glance, the pitcher thinks that he may be an easy out. But the guy on the mound has no idea of the heart and the passion that the hitter has. In fact, he has no idea what the guy in the batter’s box had to do to even jump back into the lineup.

The hitter digs his back foot in first and the front foot lands comfortably. His shoes are polished but yet well-worn. The catcher notices that these shoes have seen many a game. As the hitter grips the bat, he is looking for one pitch to hit. He whispers to himself, “Look for a fast ball that I can drive.” Stance…concentration…rhythm…. Clearly No. 28 is not a rookie.

The game begins. Today is his day.

As one sits in the stands and watches this incredible game unfold, know that it is going to have a few grueling innings. But, No. 28 has filled the stadium with more supporters than one could ever count. The visiting team has no fans, no one cheering it on and no chance to win this game.

This much we know. The first 28 days are going to be a nail biter. Twenty eight days from today will be the first bone marrow biopsy that will confirm the Car T-Cell infusion was a success. No early signs from the dugout will give any indication of that expected triumph. Even daily counts won’t determine the outcome. The official scorekeeper will keep you as informed as possible to avoid errors.

The pitcher is winding up and the hitter is still quietly rocking in motion before he starts his load….

Stay tuned for the pitch-by-pitch in the days to follow.

Samples of 7 days of prayers shared with us

Seven days of prayer for each family member.

Tag Team Challenge for No. 28

All along, Dave and I have put our faith, hope and trust in God. Never wavering, we surrendered to Him and have followed what has been written for us long ago. Our relationship with Him has changed on so many levels. And from the beginning of this journey, we have always felt that we were the instrument to bring you closer and stronger in faith too. It’s quite humbling.

As the toughest part of Dave’s treatment starts tomorrow, we know that he will be in the hospital for a minimum of seven days. We invite the entire Tag Team to join us in daily prayer. Choose to commit to seven days of prayer. Choose seven objects and place them in a location where you will see them first thing in the morning. It may be seven Jolly Ranchers, seven Red Vines or seven mints. Starting tomorrow morning, take one and pray from the time in reaches your mouth until the last swallow. Please say one prayer for Dave, and continue to pray for others the rest of the time. There are so many people who need our prayers.

Not sure how to do this? Talk to God. First, thank Him for the many blessings in your life. Second, ask Him to help those who need your prayers. And finally, have a few personal moments with Him. I’m not sure if you will feel a deep sense of purpose, but I know daily prayer gives both Dave and me purpose and strength. And if you miss a day – don’t sweat it. He will be hoping to hear from you the next day. I am sure of that. And, tomorrow morning when I begin my prayer, I will start by thanking God that so many have joined us in our prayer challenge. We would be honored if you would share this with your friends and family. There is such power in prayer. We love you and can’t wait to see you soon.

Please join us in prayer for seven days.

GAME ON FOR No. 28

Throw your hands in the air and shout whatever comes to mind. 

WE GOT THIS…BRING IT ON…LET JESUS TAKE THE WHEEL…KICK CANCER TO THE CURB…NOBODY IS TOUGHER THAN TAG….

We know that hundreds of friends and family members have been impacted by Dave and his fight to win the biggest game of his life. We also know as the fight continues, you have been just as relentless following the blog, praying for a miracle and cheering us on from the sidelines with your incessant comments. 

LET’S GO YOU JOLLY RANCHER…THAT MAN IS AN ABSOLUTE MACHINE AND HE CAN DO THIS…BOOM…LET’S GO YOU COTTONPICKER…LEAD US OFF TAG….

It is now game time. The bone marrow biopsy confirmed that the leukemia is still active, but presents a low burden at 13.9 percent in Dave’s body. This is a great improvement from one month ago when the cancer returned with a vengeance. His CT scan on Thursday also provided a look at the dramatic improvement that his right lung has made with the fungal infection. Further tests performed yesterday provided the research team with everything they needed in order to qualify him again. Yes, it’s now game time.

CHEESE ‘N CRACKERS, GET THIS THING ROLLING…KEEP UP THE GOOD FIGHT…YOU ARE ONE TOUGH COTTONPICKER…DON’T STOP YOU DOG HEAD….

Today, tomorrow and Monday are chemotherapy days designed to deplete existing T-Cells in order to make room for the newly engineered CAR T-cells. Tuesday is considered a “rest” day, and the only requirement is reporting to the clinic for bloodwork and a final check.

The day that we have been waiting for is Wednesday. Dave will be admitted to The University of Washington Medical Center in the morning. He will receive his CAR T-Cells in the afternoon. He will be in the hospital a minimum of a week and longer if we encounter any complications. Once released, he is monitored closely. On Day 28, he will receive another bone marrow biopsy to determine the success of the entire CAR-T Cell process. Then, we hope to come home for a few weeks to enjoy the beginning of our Michigan summer.   

DEAR CANCER, MEET MY FRIEND JESUS. HE’S TAKING OVER TO WIN THIS GAME.

Tune in on Tuesday for the Tag Team challenge. We hope you choose to participate.

GAME ON FOR N0. 28 

Sprint or marathon?

Picture this scenario. It would be a running contest with lines drawn in the dirt where to start and finish the sprint. On the command “Go,” both Ryan and I would take off at the same time. Seriously, my face would not only reveal how hard I was trying, but how determined I was to win. It was shortly into each child’s kindergarten year that I stopped racing them. A little embarrassing, but as Dave constantly says, “You can walk faster than you can run.”

Dave would not be very good at running right now either. Since being discharged from the hospital a week ago, yesterday was the first day we were up for the challenge of walking home from the clinic. It is just a half of a mile with a short uphill trek. We made it – as we did again today; but it wasn’t as easy as it was prior to his hospital admit April 5.

Our walk home from SCCA

Tentatively, our team of doctors have informed us that May 6 could be the next visit to the hospital. If all goes well, the CAR-T Cell infusion could take place on that day. Dave’s next bone marrow biopsy is scheduled for April 29, and his chest x-ray is May 2. Our sprint to become infectious-free before the CAR T-Cell infusion will transition back to a marathon after he receives the infusion.

We want to send our thoughts and prayers out to the family and friends of Jefferson’s Gary Betts. One of our favorite Bear baseball players who played for Dave, Gary lost his battle with brain cancer last week. His marathon lasted over eight years, and he battled with the same tenacity he once did as a baseball player.

Energizer bunny

With Easter just around the corner, it seems appropriate to bring the bunny theme into the picture. But, I want you to picture that little pink bunny that never stops. With halting steps and an unusual gate, that bunny just keeps on going…and going…and going.

Staying in bed for long periods of time is very difficult for Dave. Especially when he is healthy, he just doesn’t slow down for long periods of time. So, one can imagine that the last 12 days drove him crazy. In fact, at one point when he was in isolation, he was determined to leave the room. He just needed to walk around and experience freedom. I stood at the door, arms outstretched, blocking his way. Reminding him he was quarantined, I soon realized that nothing was going to stop him. He walked out of the room, went to the right and kept going. I walked out right behind him and went to the left. I didn’t want to be a part of him getting busted.

Losing strength from being bedridden, Dave’s steps are similar to the energizer bunny. His steps aren’t quite as halting, but feel more like jello. On one of our short walks, he found a physical therapy room with an elliptical machine. He was like a magnet being pulled to it. As he steadied himself with the side bars, he was able to move his legs much easier. Instead of heading the other way this time, I had to capture the moment.

In addition, I quickly realized that the hospital food was less than desirable, so I would leave the hospital late afternoon, cook dinner, and return with high protein meals. Even so, he dropped over 15 pounds. It is going to be a challenge to regain this weight and rebuild his strength.

Tuesday evening, Dave was discharged and was able to walk out of the hospital without assistance. We will continue to report to the clinic daily, even on Easter Sunday. Our team at SCCA will monitor his counts and administer blood and platelet transfusions as needed. Within two to three weeks, chest X-rays and scans will be repeated in order to confirm the antibiotic is clearing up his lung infection. His progress will be shared with the research team. Hopefully, they will confirm that he is eligible for Car T-Cells again.

We all had faith that Dave would keep going, no matter what. That’s just who he is and it’s just what he does. To some, he’s a Jolly Rancher. To others, he’s Superman. This time, he was the Energizer Bunny. Please keep the prayers going. This is an ideal time to keep our forward momentum.

Dave disguised as the
Energizer Bunny

Exhausted, exhilarated, excited

Dave’s reply to my morning text sums up this past week. Not only was this week exhausting, it reminded us how very fragile his body and immune system is. He was swimming for his life, and it seemed as if the ship was only drifting further away. We must stay diligent and mindful of how easily infection can make this journey seem like insurmountable waves.

The doctors made rounds this morning and are impressed with how Dave is responding to chemotherapy, antibiotics and medication. The most recent diagnosis revealed a fungal infection in his lung, which was caught very early. We were admitted to the hospital before these symptoms appeared. For some, a fungal infection would be a 4-6 week recovery. For one who has a suppressed immune system, it could take six months to two years. You can imagine our alarm when we heard this news, fearing we would be disqualified for the CAR T-Cell therapy.

Further research revealed that the infection can’t be “active,” which makes a difference in qualification. The medication for treating the fungal infection will prevent this from continuing to be an “active” infection. We are feeling exhilarated that this week’s setbacks did not sink our hopes of receiving CAR T-Cells.

Finally, once the fevers that are now surfacing nightly disappear, Dave will be released to recover at home. Home is now Pete Gross House, which is designed for Fred Hutch and SCCA patients. We are excited that CAR T-Cell therapy may only be postponed for three weeks. Of course, this all depends on his counts recovering, his chest x-rays clearing and infections disappearing.

I know that the Tag Team is just as excited as we are too. As we pause during this Lenten season to remember the suffering Jesus endured, let us not forget that He was walking on water right next to Dave during his swim this week. We felt his presence and trusted in His saving grace.

Mountain meant to climb

I turned that hill into a pile of gravel…

Looking back on what Dave has accomplished so far, I think many of us stand in awe at his tenacity, unrelenting spirit and grit. We have watched him fight through chemotherapy and battle through daily handsful of powerful drugs. More than a year has passed since this horrible disease put a mountain in his path. But in retrospect, it was nothing more than a hill. What he’s facing now looks more like Mt. Rainier in Seattle.

It’s only a mountain. Nothing but a big ‘ol rock. Only a mountain. It ain’t hard if you don’t stop. You just take a little step, a right and then a left then a couple million more but who’s counting…

On day 107 after the bone marrow transplant, relapse presented a bigger hill than the first. Without a missed step, Dave dug in and kept the pace and energy he had in the beginning. Walking to regain his strength and lifting light weights, he was readying for the next challenge. Arriving in Seattle, his goal was to be the exception to the rule and handle this with no complications and in record time.

There’s always one a little higher. Cause when I think I’m finally done, I’m staring at another one, so I reach down deep, and I lace ’em up tighter.

The disease is now like falling rocks, trying to block his path to the top. In fact, it’s the highest mountain that we’ve seen. Today the doctors have confirmed that the cancer is progressing with a vengeance, bringing ancillary obstacles as well. Mastoiditis, sinusitis, and possible pneumonia to name a few. This is all coupled with more pain than child birth, stemming from the cancer and a newly discovered bulging disc. Dave continues to reaffirm me that more frustrating than the pain is the inability to hear right now. Initially, loss of hearing in both ears is what forced us to the hospital in the first place.

Dave has also been diagnosed with Coronavirus, which is contagious. He is in complete isolation, and everyone who enters the room must wear a gown, mask and gloves. The plan moving forward is to start chemotherapy immediately for at least four days. His recovery from yet another round of chemo will determine when we can move forward with the CAR T-Cell infusion. The engineered cells will be kept on ice while Dave laces his boots up tighter and takes on another challenge.

It’s only a mountain. Nothing but a big ‘ol rock. Only a mountain. It ain’t hard if you don’t stop. You just take a little step, a right and then a left then a couple million more but who’s counting… -Dierks Bentley, The Mountain

Climbing this mountain may take a few more weeks than expected, but Dave is determined to climb it with the same tenacity, unrelenting spirit and grit we have witnessed when he climbed the rugged hills.

Mt. Rainier National Park

Preparation is key

In just about everything we do, we know that how people prepare determines how they eventually will succeed. Four NCAA teams have prepared all basketball season in anticipation for this weekend’s Final Four match-ups.

Similar to the NCAA Basketball frenzied weekend, the Seattle Cancer Care Alliance team has taken the steps leading to the infusion. The team has been strategic and has tailored the protocol to Dave’s unique type of leukemia. The doctors are closely tracking his counts to keep ALL in check. Monitoring the progress and the engineering of the CAR T-Cells have been well calculated. Another bone marrow biopsy is slated for Wednesday, along with data collection to measure markers needed for research. Each time blood is drawn, several tubes are drawn for his doctors, and several more are shipped off for research. The tandem draw assures that all requirements are met for this clinical trial. 

Dave is staying as active as possible in order to gain strength and endurance for this treatment. Although they remarked that it will be more difficult than the bone marrow transplant that he had in October, Dave refuses to believe that and wants to be the exception. Further preparation requires three days of chemo in order to make room for the CAR T-Cells. This is scheduled for April 15-17. He will then receive one day of rest before the infusion. April 19 is the scheduled date for the infusion, although Dave needs to be in optimum health before that day.

An unexpected visit to the ER last night delayed this post. Dave was admitted to The University of Washington Medical Center early this morning. The diagnosis is Mastoiditis and Sinusitis, and he is receiving IV antibiotics for the next few days as an inpatient. The doctors are working quickly to resolve any health complications that could prevent the timing of the infusion.

Most importantly, every person we talk with about this CAR T-Cell treatment is beyond excited. The general feel is that this is a game-changer (their words; not mine). This game is a bit more important than the Final Four, but like any other game, we are preparing each day to reach the victory platform.


Opening day in sync for Team Tag

The perfect hum of the Apheresis machine reminds me of the consistent rhythm of my sewing machine. It is in perfect tempo as it spins Dave’s blood. The nurses are not only impressed with the veins he offered them in his arms, but additionally impressed with the hue of his cells as they are being collected. The vein-to-vein procedure is taking blood from his absolutely still left arm and transferring it to an Apheresis machine. A circular spinning motion separates the cells so that the heaviest part of the cells (red blood) falls to the bottom. The white blood cells are separated and usually lie within the middle part of the collection. The top portion is a clear-like serum. They are collecting the middle part of this separation for the CAR T-Cell engineering process. This pale yellow liquid continues its path to a bag hanging up high, while the top and bottom portions are returned to a vein in his right arm. Most importantly is that his left arm doesn’t move throughout the four-hour process and his right arm moves minimally.

Once the nurses are satisfied with the collection, and that it meets high standards set by the research company, we will be off to another floor in the clinic. Dave will receive chemo, to keep ALL in check while the cells are being engineered. He will also receive a blood transfusion because his red blood count is running low today.

All in all, everything is in sync and going as planned. We should be done at the clinic within eight hours. It is perfect timing to still enjoy the beautiful day. BTW- thank you for sending pictures and reminding us of all the love and support from the Tag Team. We are so blessed.

Opening day 3/27/19

Stealing a line from our good friend Wayne Welton, Wednesday is opening day for the Sontag team. The cell collection (apheresis) for the CAR T-Cell clinical study is on. Results from the bone marrow biopsy came back positive, with only 13 percent of the bone marrow affected with leukemia. Down from the 20-30 percent from the bone marrow biopsy a month ago, the chemotherapy continues to have a beneficial effect, according to another close friend, Ed Feldman.

Don your team shirts on Wednesday and let’s have an Orange-out Day for Dave. Your support, thoughts and prayers have made such a powerful impact on his fight to beat cancer. Please add to your prayers and pray for all who fight any form of cancer. No one can do this alone, but together we’ve got this!