As a dad of a leukemia warrior/patient/victim/thriver/death, I’ve been told countless times to:
- Be brave!
- Be strong!
- Be positive!
I recently read a blog by Jackie Acho that provoked me to write from my point of view, as someone who watched the life get sucked out of my 20-year-old son, pointlessly. I encourage all to read Jackie’s blog; https://jackieacho.com/if-only-cancer-science-were-as-brave-as-cancer-patients/.
So, “Be brave! Be strong! Be positive!” My family and I have heard it ad nauseum. People don’t say this out of a lack of empathy. Simply, we don’t know what to say. How can we? What do you say to a young man facing his mortality? What do you say to a 5-year-old girl who knows more about sterile environments than she does about playing in a sandbox? I looked into the eyes of my son as he closed them one last time, voluntarily. I also looked into his eyes an hour before he died as his body shut down for good. He had no brain activity. His eyes were wide open, but no one was home. Bravery, strength, and positivity are commodities we don’t need. We have them. In spades.
Jacob was treated at the Cleveland Clinic. Here are pertinent facts about Cleveland Clinic (CCF) and his primary oncologist:
- Ranks 5th best cancer center in US
- Top 15 cancer center according to multiple publications
- Top 5 in innovation and technology
- Jacob’s oncologist Mikkael A. Sekeres
- Nationally known as nation’s leading doctor treating ALL, MDS, AML
- Writer of 8 books
- Author of 400+ manuscripts among these
- NY Times Contributor
- U Penn Medical School
- Post Grad training, Harvard
- Fellowship Mass General
- Currently Chief of Hematology, U of Miami Sylvester Comprehensive Cancer Center
This is a short list of the people charged with Jacob’s care. The first directive from Dr. Sekeres; “Don’t google anything. It’ll only make you crazy.” He bonded with his oncologist as they shared commonalities. Jacob’s health plan consisted of chemotherapy, and palliative care (more drugs) to help curb the pain of the poison being injected and dripped. He worked with a social worker to help with the stress of cancer. Music therapy would visit him when he was in the hospital. CCF’s nurses, nurse assistants, PA’s, NP’s, food staff, janitorial staff, etc. practiced a satisfactory amount of empathy toward Jacob and, somewhat, to us as a family.
Here is where we were failed. Jacob was offered one thing to combat cancer. Poison. If this didn’t work, the next step would be a bone marrow transplant (BMT). If that didn’t work, then Jacob, weakened and defeated, would have a few days to live.
The process started with hope. His blood work looked good. The schedule was laid out for months. Then, the first poison attacked him. He ended up in the ICU with life threatening pancreatitis. Jacob spent two days without food, water, and consciousness. Be brave, strong, and positive! When he emerged, 20 lbs. lighter, the plan continued. Jacob went into remission with three years of chemo/poison planned.
Jacob was sent home with the hopes of continuing his education. He was given a few vitamins by the palliative team. Our friend Heather, having gone through breast cancer, gave us advice to make sure to get on a healthy vitamin and food regimen. CCF didn’t go into any detail about this importance. In fact, when I asked about nutrition, it was dismissed with only a “yes, eat healthy.”
In July 2020, Jacob’s cancer returned. Naomi and I found out, before his oncologist. I will restate that. WE KNEW BEFORE DR. SEKERES! Jacob had gone a few months without a CT scan. His bloodwork looked good so there was no need to get a CT. Finally, the doctor relented and agreed it was a good time to get a CT scan. Jacob had a normal follow up a few days later. CCF has a policy to add test results immediately, prior to consultation. Naomi noticed it first. She came into my office and asked me to check the results. We cried. The radiologist used terms that didn’t look good. The next day, Jacob and I were sitting with Dr. Sekeres. He examined Jacob’s lymphatic system and gave him a clean bill of health. I hadn’t said anything to Jacob yet. Why worry him when I barely understand this shit? Then, I asked Dr. Sekeres to look at the results as they looked concerning.
The doctor read the CT result from the radiologist with a bad poker face. I thought something was wrong. He said that he’d check with the radiologist, but everything looks good. I was guardedly relieved. We headed off to chemotherapy. As the nurses were loading the chemo, Dr. Sekeres came entered. This had never been done. I looked at Jacob, who intuitively said, “this isn’t good, is it?” “No,” the dejected doctor replied. He spent the next few minutes explaining that Jacob would be admitted immediately and start the process of a BMT.
Jacob cried. I watched knowing that I was helpless. I could offer no consolation. We hugged and held hands. I asked Dr. Sekeres what this meant. We were brutally clear on our questioning. “Am I going to die from this?” This is a fair question. “It’s a curve ball, yes, but we are going to knock it outta the park,” the doctor replied. “They will be here to transport within an hour. Good luck.” We were told that Jacob would have a new doctor who will handle the BMT. His palliative team was changing. His nurses were changing. Jacob would have an entirely new team. His biggest ally, his social worker, would also not be on Team Jacob anymore. BMT and Leukemia, although juxtaposed on the same floor, had entirely different teams and processes.
I remember calling Naomi and letting her what was happening. I reminded her to NOT google anything, as that was a directive of the doctor. Naomi had to share the information with Ana. I watched as Jacob Facetimed his little sister. He was devastated but gathered his brave face, strength, and positivity to let his little “seester” that he’d be fine. “It’s only a curveball and I got this.”
The remaining 5 months of Jacob’s life was tragic. The details are not going to be shared at this point. Naomi, Jacob, and I lived at the hospital. We (mom and dad) sneaked in and broke every Covid rule they had to sit with him. He spent those months talking to his little sister on the phone. We cherished the times he was home. All of this was with the thought that once he got the BMT, he’d be cured. We can do anything for a few years. Remember, we are brave, strong, and positive!
The two methods of cure were tried. They failed. Option three was to get Jacob’s affairs in order. He died in less than a week.
These are the facts of Jacob’s case. As often as I’ve heard, “be brave, be strong, be positive,” I also heard people, daily, tell me how lucky we are to live so close to the world’s finest cancer centers. Bullshit.
My indictment is not on the Cleveland Clinic. CCF uses the best techniques and practices that Big Pharma will allow. Our system is set up to have just enough people die of cancer <or insert disease of choice> while keeping death rates relatively stable. Leukemia cases, according to Nature.com who took the info from US News, have doubled nationally, in the past 20 years. The gap between new cancer cases and death rates is, seemingly, positive. It’s a façade. That gap represents Big Pharma, hospital, healthcare, food, and much more, profits! These rates are not sustainable over the next 20 years. How many more “Jacobs” will have to be brave, strong, and positive for us to make changes? How many more “Brandt, Naomi’s, and Ana’s” will have to watch their loved ones die, needlessly?
- Continuation of the “best healthcare in the world myth”
- Environmental Factors
- My conversation with a doctor