It has been a while since I have given a status report for Conlin’s treatments. Last time I wrote, he was making good progress with his new chemo regimen and Stem Cell transplant was coming into view.
It hasn’t exactly been a straight line to the next phase. The process of getting ready for Stem Cell Transplant requires a lot of tests to confirm that he is healthy enough for transplant, and that the cancer is suppressed enough to have a successful treatment. He went through two more rounds of the salvage Chemo to continue to beat back the cancer remaining in his body and get him as close to remission as possible.
During that time, Conlin had tests for his heart, and extensive blood testing. He had additional CT scans to monitor some spots on his lungs. The doctors went back and forth about whether the spots were cancer or signs of inflammation. They were leaning on inflammation and felt that he wouldn’t be served by doing more rounds of salvage Chemo. By consensus, the doctors decided he was ready for the Stem Cell Transplant.
After his last round of Chemo, he had two painful lumps appear on his arm almost overnight. It has signs of infection and he was given antibiotics. The doctors were not much deterred or disheartened by this, but he did need to have a biopsy. He was quickly seen, and a sample was taken. The dermatologist was pretty sure on sight that the lumps were just blocked blood vessels. The additional tests came back clear of cancer cells.
He had his last PET Scan May 1st, and he had his meds in hand to start readying his body for Stem Cell collection. We had a schedule for premeds, Covid-19 testing, collection, and finally admittance for transplant. He gave himself one round of pre-collection shots Sunday the 3rd and Monday morning the nurse coordinator called to tell him that the whole procedure was postponed. They needed one more bone marrow biopsy. He hadn’t had a bone marrow biopsy since the beginning of treatment and the doctors just needed to be extra sure that cancer had not moved into his marrow. Obviously, we are glad that all I’s are being dotted and T’s being crossed, but that was a pretty hard jolt to suddenly put the brakes on after so much preparation. Ultimately, things have only been postponed about 10 days, and he is just about ready to start the process for real.
This Friday, May 8th, Conlin will start giving himself shots to prepare his body for Stem Cell collection. The treatment he is receiving is Inpatient Autologous Transplant. The process is fairly long and complicated, but basically they collect his stem cells and store them. He starts by taking shots for four days prior to collection to make his body overproduce stem cells. On the fifth day, the stem cells are collected. It is an all day process and he will be tired and a little sore.
Then they admit him to the hospital for very intense inpatient chemo. His chemo regimen will take place over six days, four of which he will be given treatments twice a day. The chemo will attack any cancer remaining in his body but also all fast replicating cells like red blood cells, white blood cells, and hair follicles. These treatments will completely destroy his bone marrow and leave him with no immune system, and hopefully no cancer. He will also have side effects of chemo. He has not been very sick so far and he has had some of the chemo drugs before, but he will probably feel more of the effects because of the frequency and intensity of this regimen.
The day after treatment ends is called day 0 and is the day he gets his stem cells back. Transplant day is his new birthday. He will be given medication to support his body and relieve discomfort. It takes 10-12 days for the stem cells to graft and start making new blood cells. Once he is feeling well, and his blood work shows good numbers he can come home. They estimated the whole process to take two and a half to four weeks.
When Conlin gets home, he will be isolated from the public for a month and our family will need to take extra precautions to keep him well. He will essentially have a brand new immune system and won’t have any immunity to diseases he has already had. It will be like he is a newborn and he will have to get vaccinated all over again.
As for long term side effects, the doctors said it will take him a while to have his normal energy and may be prone to exhaustion. Overall, once the effects of the chemo and the immediate transplant side effects wear off, he shouldn’t feel sick. Like most of this process, we won’t get a handle on what treatment and healing are actually like until we are in the middle of it. Conlin is as prepared as he can be, and is ready to be on the other side of this. Once he is past the transplant phase, he will continue to be monitored and have scans frequently in the coming years. Hopefully, he will have a deep, long term remission.
People have asked a lot about his hospital stay in the wake of Covid-19. UCSF has been really reassuring that things in the hospital are under control. They haven’t seen an outrageous number of Covid patients and those patients are isolated well away from the transplant patients. There were already a tremendous number of precautions in place for protecting transplant patients before the outbreak and they have updated policies and added precautions to ensure Conlin’s safety.
When we first started planning for transplant, the plan was for me to go back and forth between him and the kids. Because of the Covid-19 outbreak, there are no longer visitors allowed in the hospital. I think that it will be harder on him to be alone in the hospital, but we will call and video chat. I’ve been given a list of contacts to check in on him through his nurses and medical team. I can see what is happening in broad strokes on his online chart.
On the plus side, we had been worried about the disruption the kids might feel bouncing around while I traveled back and forth to SF and that is no longer a parenting dilemma we have to deal with. We were worried about keeping Conlin healthy while Elaina was in school, and for all the hardship of shelter-in-place it is making it easier for our family to stay well.
This is not how we imagined the transplant process, but we never thought anything like this would happen eight months ago. Be it cancer or a global pandemic, we adapt, and count our blessings that there are treatments available, our jobs are secure, and we have a tremendous network of support. We are so thankful for technology. Even at a distance, we will get to see him and cheer him on daily, hourly, or by the minute if need be.
We have so appreciated the prayers, kind words, and offers of support from all of our friends and family. We continue to be amazed by the compassion, diligence, and genius of his medical teams at Clovis Cancer Institute and UCSF. The next few months are going to be a trial, but everyone is on-board to get Conlin over the finish line. We are praying for a complete remission and his continued health. Your thoughts and prayers are welcome now and always.
Many of you donated to a Leukemia and Lymphoma Society fundraiser that our daughter, Elaina, put on through school. I haven’t had the chance to thank each of you, but the outpouring of support and generosity was incredibly moving. We have been supported by LLS and have benefited from the research they fund. There are many people who do not have the same family support or financial resources that we do, and LLS gives patients financial support, provides transportation, mental health services, nutrition guidance, and offers other great services to those who need it as well. Your donations are well spent, and help make tremendous progress in the fight against blood cancers.
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