This is not a post for the faint of heart, nor is it meant to be a downer for us survivors with CLL. '
Maybe its only utility is to remind us to live every day to its fullest, to ask us to accept that we really have much less control than we imagine, and to urge us to push hard to find smarter and gentler therapies.
Here are Michelle's unedited words, shared with her permission.
This wasn't supposed to happen.
Aaron had planned to come home to New York today or tomorrow to prepare himself for further treatment. His doctors had begun applications to three centers for a very promising t-cell therapy that would either precede or take the place of a second bone marrow transplant using his sister, Elana, as the donor.Aaron was not suffering. He had not given up. He told our children the night before he passed that they were the reason that he was getting better. He told me that he would never leave them when they were three and five years old. He planned to enhance their lives for years to come. He told me that I looked tired and that he was excited to rest up together as soon as he was home. On Monday I believed that we would survive and thrive once again. That our family was safe. It is true that we found ourselves in a difficult situation last month with the news about the secondary lymphoma but Aaron always believed that we would make it through this crisis and that, in the end, it might lead us to the elusive cure. He wondered if he hadn't endured enough before that last transplant and that perhaps he would need to be brought to the brink of death in order to rise again. No matter what it would take, we planned to do it together and come out the other side into another beautiful stretch of years. He began chemotherapy on Tuesday December 16th, the very same day that the Richter's transformation was confirmed with the results of a lymph node biopsy. That night he drove home from Boston, organized his work, rose at 3:30 am (his usual time--the day was never long enough for him) and worked straight through until Friday. Saturday he played with our children, cuddled with me, and made dinner for his family. He was tired but not sick. The photo that has been shown of the four of us was taken on Saturday December 20th, the day before he went into the hospital. He was very much alive and focused and excited to see our children perform in their winter solstice concert. This was not a man who was contemplating death.The hospitalization was sudden and complicated by this strange and intense hip pain that forced him onto pain killers that made him psychotic. Aaron was always a lightweight. He never even took an Advil so to have his system overrun with morphine and Atavan was overwhelming. Though that day-to-day challenge sparked many concerns for brain bleeds, infections and strokes, he was simply under the influence of the medication. And what we feared might be metastatic disease to the hip was a musculo-skeletal injury that was worsened by the injection administered to stimulate his bone marrow. Aaron's cell lines had been blown out by the chemo and his system needed time to recover. Aaron had patience. He was willing to endure the many discomforts that accompany low counts. He never complained. But we knew that he needed better care. Once we relocated him to Boston, the pain was quickly brought under control and while he was exhausted from the ordeal, Aaron was once again oriented and ready to move forward. His team had begun a new chemotherapeutic regimen that was quickly shrinking his enlarged lymph nodes. We hoped to see a rebound in his counts this week as the cancer levels in his bone marrow were brought under better control. Aaron was walking around the transplant unit on Monday with a PT, doing squats, and lamenting that what had been a body in the best shape of his life was suddenly so deconditioned. He intended to turn that around. Aaron had wanted me to bring the kids home so that they could get back to their routine. I was not supportive of this decision but he was always the one to put the children ahead of himself. He was happy to hear their squeals of delight as they raced about and reconnected with their space. I was counting down the days until we could bring him back into our house that did not quite feel like a home without his presence.Tuesday morning, I called him on the way to school and learned that he was having trouble breathing. He said that they thought he had pneumonia. To be honest, I became a bit hysterical as I did not want to see one more thing stand in our way. Aaron reassured me that all was well, that it was a slight thing, offered the kids his love, and then the line went dead.I could not get him back on the phone. We never spoke again. I soon learned that Aaron did not have pneumonia but had suffered a bleed in his lungs that was making it hard for him to breathe. The doctors believed it was from one blood vessel that needed to be repaired. I agreed to the procedure, packed the car, retrieved the kids and headed to Boston. Thankfully not alone. Sasha and Mira's teacher and my friend, Lorna, could see my distress and offered to drive us. Throughout the drive, we received updates. Most of them led me to believe that Aaron had a good chance of survival. When I arrived, his mother, Louise, was told that Aaron had survived the procedure and that we could see him in a few minutes. At that time, I imagined his release would be delayed. Nothing more. I was completely unprepared for the hastily delivered news that he had spontaneously begun to bleed again, that he had coded twice, and was essentially about to die. Aaron and I never said goodbye. Aaron never wrote letters to the children. Death was not part of our plan. And in no scenario that I could have ever envisioned was Aaron lying on a table covered in his own blood while I begged him, and God, and every one of the thirty doctors and nurses who surrounded us to save this most amazing man. My love. A father who devoted himself to his children. A doctor with an amazing brain and work ethic. I couldn't have seen myself nearly on top of him, holding his face, and tasting his blood as his incredible spirit moved out of his body. I couldn't have believed I would hear from a doctor that the reason for this situation was disastrously bad luck. But that is what happened.And it should not have happened. Aaron should be on his way home to us. We should be walking forward arm in arm. This is what we wanted. This is what we fought for. This is what we clung to every day as we loved each other and our children and this incredible life that we had built together. We fought for life until the end. He deserved the best kind of luck at every turn. Aaron Caplan was kind, generous, loving, brilliant, joyful, energetic, always smiling, embracing life and those around him every minute of every day. We never fought. No one ever fought with Aaron. He operated on an entirely different plane than most people. He should have had the chance to go on. I don't know how to do so without him. He was our whole world. Michelle also wrote me:
Aaron so admired you and wanted to donate to your site. I would like to direct people as to how to do this. Can you please tell me?If you want to support our nonprofit 501c3 CLL Society Inc. effort to meet the unmet needs of the CLL community, there is Donate button on the very top of this page.
If you prefer to mail a donation, please send the check to:
CLL Society Inc.
PO Box 10546
Newport Beach, CA
92658
Thank you.
May Aaron's memory be a blessing.If you want a personal response, or just want to stay in touch, please email me at bkoffmanMD@gmail.com. I have no other way of contacting. Thanks. Stay strong. After all, we are all in this together.