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.
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!
I am going to be completely honest with you at the risk of sounding well -ashamed. I don’t remember learning how to pray as a child. Brought up in a strict Catholic household, I certainly knew right from wrong. And the Catholic grade school provided a weekly mass, where I’m sure the lessons were based on the gospel. I don’t remember those lessons though. And talking with my Grampa Yoas, who will be 105 years old in just a few days, he didn’t remember learning how to pray or even praying as a child. I do remember the nuns had wooden rosaries that chattered at their sides when they walked. It’s a sound I still love today.
I prayed in the dugouts a lot while I was keeping score for Dave. Oh, sometimes my prayers were for warmer weather when I sat there freezing. I remember being unable to feel my toes and thinking why doesn’t someone find a way to heat these dugouts. Playing baseball in the spring in Michigan made it very challenging to love the sport – until about May. I remember mostly praying to God when Ryan was on the mound pitching. I disliked when he pitched. I had typical mom jitters that never went away until the last out. I didn’t pray for Susan to run down that fly ball in center field because I knew she’d arrive in time to camp under the ball and effortlessly make the putout. She was faster than lightening. Just as typical was Brendan deking the runner at first base with his eyes in the air, only to then scoop up a one-hopper and fire a strike to second to start 4-6-3 inning-ending double play. He was one of the smartest infielders we ever had. No, I found myself mostly praying when Ryan pitched. As a talented hitter, I almost took for granted he’d go 3 for 4 or even 4 for 4. But, when he’d pitch, I can still hear myself saying, “Dear Lord, let him wiggle outta this inning today and I will remember to say my rosary tonight.”
I am sure my rudimentary and feeble attempts at praying were heard. Not always answered the way I wanted, but they were always heard. Praying these days is more purposeful and much more often than ever before. In the last few years, I have set my Fitbit timer to remind me to give thanks and pray for those in need at 5:05 p.m. My prayers are always for someone or something that I encountered that day. Soon after we arrived in Seattle, a box was delivered from one of my longest and dearest childhood friends. It contained snacks and gifts to make us chuckle. In addition, the box contained daily devotionals. I have begun to read the devotionals in the morning. The last line in one of the booklets is a prayer that actually gives me something to achieve throughout the day. Through prayer, it sets the purpose of my day for me.
Today I prayed that when we receive the results from SCCA, I am given the strength to move forward with the journey that has been written for Dave and me long before we were born. Today I prayed for continued courage as I stand by his side and do whatever it takes, even though I might not like the way in which my prayer is being answered. And, today I prayed for wisdom and understanding. Maybe this cancer battle is happening for something far bigger than I can understand right now. But Lord, give me the wisdom to know and accept that all things happen in Your name. You are the only one who can answer my prayer for complete healing. Amen.
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.
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.
Tag Team 