This is our first story about a difficult topic: RELAPSE. But this story is also a reminder that many of our contributors write their stories in real time. These families share their stories with CellCycle at a critical time in their lives. I hope you will consider donating to support families like Connor's. Your donation supports research into developing new treatments for relapsed patients, like Connor. Consider being the reason families like Connor's share their story.
Connor was diagnosed with ALL in May 2011. He was 19 months old.
Conner had recurrent ear infections and it wasn’t getting better with antibiotics so we took him back to his pediatrician. That day, he was diagnosed and we started treatment right away at Children’s Hospital (he was in the hospital for 8 days during the start of his diagnosis). He completed 3 years, 3 months and 3 weeks of chemo treatments and went off treatment on September 1, 2014. Connor was off treatment for almost 2 ½ years before he relapsed in February of this year.
Relapse: Connor was injured playing soccer at school in September 2016 so we took him to the ER to have him checked out. The bruise that he got was right where his spleen was and it had been enlarged for quite some time so we were afraid that there was internal bleeding (he also has a platelet function disorder). They did a CT scan and said they found abnormal lymph nodes and wanted us to follow-up with his oncology team, which we were doing anyway with routine check-ups. He had no other symptoms and blood counts were great so we kind of held tight until December 2016 when he had an MRI to get a better look and see if the enlarged lymph nodes had gone away. They hadn’t – they had actually got bigger. They also noticed an abnormality on his enlarged liver and referred us back to his liver doctor. She wanted to do a liver biopsy to see what was going on and thought that maybe he had a blocked bile duct or damage from previous chemo. They also decided to biopsy the lymph nodes at the same time to see if they could figure out why they were showing up on recent imaging. He had the liver biopsy and lymph node biopsy on January 31st. The lymph nodes were completely fine. The liver had leukemia cells in it. They called us February 2nd to tell us that the liver biopsy results were in and that they believed Connor had relapsed with his leukemia. On February 3rd, they did a double bone marrow aspiration to see if the leukemia was in his marrow and it was – 60% of his bone marrow was involved. Oddly, Connor had been acting completely fine with absolutely no visible symptoms! We were told that they would have likely seen the change in his blood counts at his next appointment (it was previously scheduled in the coming month). So, we started the process of getting a new port and chemo treatments again. He spent 35 days in the hospital after diagnosis and has been in and out ever since.
This time the chemo treatments are much harsher and the majority require inpatient stays (whereas it was mostly outpatient the first time around). Everyone who relapses with ALL has the same first block of treatment – the chemos used this time around can cause a lot of side effects and counts drop to very low levels for quite some time so you remain inpatient until they recover. After Block 1, Connor had a bone marrow aspiration that tested two things: to see if he was in remission (he was – no visible cells in his marrow) and to determine his MRD (minimal residual disease – the chance of relapse). MRD has to be below 0.1% to remain on low-risk chemotherapy. Connor’s MRD was 0.43% so he went to intermediate risk protocol which also meant Connor was on the path to Bone Marrow Transplant. His protocol requires 3 Blocks of treatment before going to transplant. After completing Block 3 about 2 weeks ago beginning the work-up for bone marrow transplant, Connor will likely have his bone marrow transplant sometime in early July, provided everything stays on schedule.
We don’t know what exactly to expect from Bone Marrow Transplant yet (it seems we learn a little more every day), but we have gotten the basic information and know that he will likely be inpatient in the BMT unit for at least 4-6 weeks, provided everything goes smoothly. He already has his g-tube to make sure he has adequate nutrition during transplant, and he’ll also have to get a broviac added (he currently has a port, which he’ll also keep) before we start transplant. Connor will have total body radiation for three days, twice a day, in the days immediately before his transplant date. It will be his first time receiving radiation.
Good news: Connor’s big sister, Chloe, will be his bone marrow donor - she is a 100% perfect match and is excited to help him, but a little anxious about having surgery. Given that he has a related match, we’ve been told that his chances of complications like GVHD are less likely, so we are optimistic about that! After transplant, Connor will not be able to go very far from the hospital for a whole year (so no vacations) – we live close enough that we should be able to stay at our house (some families stay in Brent’s Place or the Ronald McDonald House). He’ll have to wear a mask whenever we leave our home. Unfortunately, he won’t be able to attend school, so he’ll continue to receive homebound school from our school district and we won’t be able to take him into public places like restaurants, museums, movie theaters, etc. Once he passes all his post-BMT tests, he’ll be able to go back to being a “normal” kid and hopefully we never have to deal with leukemia again!
I hope you will join CellCycle in wishing Connor and his family all the best over the coming weeks, months and year during his bone marrow transplant. Supporting CellCycle supports treatments for patients like Connor. Consider supporting CellCycle and LLS through your donation and help us help families like Connor's.