Near the end of June 2020, Quinn had been complaining of bone pain and had intermittent fever. He became very weak and fatigued. He layed down all day and needed help walking up the stairs. We weren’t sure what to make of it. Thought perhaps it was growing pains. Maybe he had overexerted himself playing sports. Based on the symptoms I told the advice nurse, she suggested I get him to urgent care ASAP. So I did. Took us awhile to get from the car to the front entrance....he had a hard time walking. Quinn got right in and was immediately put on IV antibiotics, had blood work taken, and then we waited. We assumed we’d be going home that night. Dad and Avery waited up for us. After nearly 3 hours in urgent care, the doctor asked to speak to me outside the room. I will never forget this moment and all the pain it will leave inside my heart forever. On the evening of Friday, June 26th, at roughly midnight, the urgent care doctor had me go out into hallway to tell me all signs were pointing to a blood cancer. I didn’t know how to take it. I couldn’t even process it. I didn’t know how to go back in the room and tell him. Quinn underwent a COVID test and was admitted to room #405 at Randall Children’s Hospital. Doctors surmised it was Leukemia. By Monday, it was confirmed to be B-Cell Acute Lymphoblastic Leukemia. We learned it was the most common childhood cancer and the most treatable with a 90% success rate if undergoing standard treatment. And, what’s more, nearly 90% of children reach remission at the end of first one month phase (induction). Upon end of induction, Quinn’s biopsy results unfortunately revealed that he was not in that 90%. Our window of hope had narrowed significantly. This gave us a much more grim perspective on his prognosis. At that point it was becoming clear standard treatments may not be enough for Quinn. His numbers were down but not enough. Quinn was diagnosed with very high risk Leukemia based on his age and high white blood cell count of 152,000 upon diagnosis. Doctors have also found that Quinn has a rare genetic mutation (JAK 2 Philadelphia like) which may help explain his resistance to chemo. Because he is very high risk, he also is at very high risk of relapse. We started researching other options. Up until recently, a bone marrow transplant was the next best step for an individual in Quinn’s situation. However, the transplant process is very tough on the body leaving many potential long term side effects such as GVHD (graft versus host disease), etc. We had also heard of a newer treatment called CAR T Cell therapy which recently had been approved for refractory ALL cases like Quinn’s.....THANK GOD! A couple years ago, he would not have qualified unless he had achieved remission and then relapsed. We were hearing many success stories with CAR T and were hopeful it would be Quinn’s path to a long term complete remission and a way to bypass the difficult transplant process. Quinn transferred to OHSU’s Doernbecher Children’s Hospital and begin preparations for CAR T-Cell Therapy. He received his genetically engineered T-cells on November 25th, 2020. On December 31st (New Years Eve), we received a call that Quinn’s one month post CAR-T biopsy results indicated no evidence of disease. Yes, CAR-T put him into remission! It was a beautiful, wonderful, and relieving way to end what had been such an awful year.
Quinn went in for monthly b-cell tests to monitor if CAR-T was working as it should. If no b-cells present, CAR-T was effectively doing its job. January and February’s bloodwork showed no b-cells. Quinn was growing stronger each day and really building back his strength and energy in miraculous ways. But unfortunately, March’s bloodwork showed an increase in b-cells. At this point, it was a sign that his super T-cells were giving up the fight. It was known to us all along that if the b-cells were to return this early on, he would need to go to transplant because the risk of relapse is too high. We had hoped to avoid this process. It is especially hard to fathom taking him to transplant when he is seemingly doing so well. But, we continue reminding ourselves just how hard it was to get him to remission. And, if it returns, it may do so with a vengeance. It’s almost not a question of “if,” but rather, “when.” We are grateful for CAR-T because it at least got him to remission. The almost 4 months of remission it has given him thus far, has given him a chance to be stronger going into transplant.
Luckily, Quinn had some great donor options and they were narrowed down to one very good one . This donor underwent thorough health screening to make sure they met all necessary criteria. Quinn was admitted on May 18th with the idea to spend 5-6 weeks inpatient for the transplant process. While awaiting his new marrow, he had 6 rounds of Total Body Irradiation followed by 2 days of high dose cyclophosphamide. These were done with the goal to completely wipe out his own marrow to make room for the new donor’s marrow. He had 2 days of rest following. Then, on Wednesday, May 26th, at 11:10am he began receiving his new donor’s marrow! May 26th will always be the day we celebrate his re-birthday. It is his second chance at life❤️🙏.
We just recently had his post transplant bone marrow biopsy to determine whether disease is present or not. A few days later we received the AMAZING NEWS that no evidence of leukemia was found. Doctors also did a chimerism analysis to seek out percentage of donor cells in his blood. This informs doctors of degree of engraftment and if transplant was a success. The analysis revealed Quinn has 100% donor cells. This was more outstanding news. They will continue checking chimerism levels periodically as they can waver with many transplant patients.
As I’ve mentioned, transplant can come with risks however. The possibility of contracting Graft Versus Host Disease (GVHD) is fairly high. Quinn was discharged quicker than we had expected because all symptoms were improving. He was discharged post BMT day +21. He won a certificate for walking 26 miles around the transplant unit during his stay. He seemed to be healing very well. Once discharged and back home, things began to take a turn. He experienced stomach pain, nausea, and diarrhea. It spiraled very quickly. He got to a point where he could not keep even water down. One week and 2 days after discharge, we got him admitted again. Upon much testing; GI scope and fecal sample analysis, he was diagnosed with stage 3 Gastrointestinal GVHD (of stages 1-4). The GI scope found redness, hemorrhages, inflammation. We were fortunate on one hand the transplant worked; however, unfortunate in that the new cells began attacking his gut. This has led us down a new path of healing.
After a 2 week stay for Gut GVHD, Quinn was home another 5 days and then admitted again. This was because he contracted the cytomegalovirus (CMV). With a compromised immune system, he was simply unable to keep this commonly latent virus at bay. He spent another 2 weeks in house to begin Gancyclovir to treat, all the while, continuing to GVHD battle. The Gancyclovir was proving ineffective and so, he was switched to another CMV med Foscarnet. He was finally sent home again with at home infusions of Foscarnet to continue battling CMV.
We thought we had finally seen the end of his hospital stays. However, after 2 weeks back at home, he began having painful and bloody urination. This landed us in the ER. He was sent home with no official diagnosis or treatment. It was misery for him. Finally, after 5 days of extra clinic visits, a trip through ER, and a long awaited test result, they diagnosed it as the BK virus. They decided to admit him to begin treating and to help manage his painful symptoms. He spent an additional week in and a half in the hospital. He is still fighting both viruses; however, they are both showing signs of substantial improvement.
Quinn is staying strong despite the large mountains we’ve already climbed and the potential long road ahead. Even after 94 nights of hospitalization, 2 PICC line placements, chemotherapy, 6 sessions of radiation, general anesthesia 14 times, anemia, double lumen hickman placement, 2 cell apheresis sessions, neutropenia, several Iv blood draws and injections, a seizure, countless clinic visits, countless pills and infusions, 10 bone marrow biopsies, at least 9 lumbar punctures, O2 assistance, 18 blood transfusions, pancreatitis, peritonitis, 5 chest X-rays, 2 CT scans, 1 MRI, 5 ultrasounds, an echocardiogram, 3 EKGs, CAR T Cell Therapy, a Bone Marrow Transplant, GI GVHD, CMV, TMA, BK Virus, TPN, fever, blood clot, blood clot injections, rashes, nausea, fatigue, faintness, mucositis, high blood pressure, heartburn, constipation, diarrhea, pain, cramping, sweats, Hickman removal, and 12 COVID tests. He is one brave boy. Braver than I’ll ever be. I so wish this wasn’t his reality. I would do it for him in a heartbeat if I could. I don’t wish this reality on ANYONE. BUT, we still have hope and faith. We haven’t lost sight of it. We are still fighting STRONG.....QManStrong 💪!!!!