November 22, 2019
Yesterday while Bradley was in clinic throwing up and getting infusions, I met Olivia. She was diagnosed with cancer 3 weeks ago and her young mother was wide eyed, scared and as clueless as I was a year and a half ago. Olivia was very articulate for 2 years old. There was an active shooter drill while we were there and she asked why the lights went out. Someone tried to help her understand and she looked up with her big blue eyes and asked "Is it scary?" My heart fell out and shattered right there on the floor. Not because of the drill but because she nor her mother have any idea how scary it's going to get. They are waiting to find out if her 4 year old sister is a match for a bone marrow transplant. (Bradley's brother wasn't for him.) How are her parents going to make her understand why they have to make her sick to make her better? Giving bone marrow is also painful; how do they explain to their four year old daughter they have to hurt her to make her little sister better? Let's hope and pray little Olivia doesn't have as many post transplant complications as Bradley did. Before we left the clinic, Bradley said, "Mom, you know something, "I'm really fortunate I'm old enough to understand what's happening to me and why." It was as if he was reading my mind. I've posted my first blog this morning (below). I actually wrote it a year ago but I want to start with this one because it serves the purpose of my blog which is to become wiser everyday together. THIS FIRST BLOG IS AN ARTICLE I WROTE ALMOST A YEAR OLD, written in January of 2019. What I want to communicate is that our doctors never once mentioned something called car-T cell therapy. We had to find out about it on our own and then advocate to get it. Should anyone you know EVER get diagnosed with any kind of cancer. There are other options than chemotherapy, radiation and even bone marrow transplants. Although we did end up having our child undergo a bone marrow transplant and it was AWFUL, ASK, RESEARCH find out what other options are available because there are revolutionary cutting edge treatments available through studies everywhere. A Promising New Treatment In the Fight Against Leukemia What is the worst thing your doctor could say to you? “You have cancer?” I thought so too, until I heard my child say, “Mommy, I don’t know if you know this yet, but I have Leukemia.” That was mid July. Although the wonderful team of doctors at Walter Reed have done everything they possibly could with the cancer-fighting chemotherapy they have available, we now face the new year with the fact that chemo just isn’t working for our 12-year-old son. We conceded to move forward with a bone marrow transplant which was supposed to be the last resort. This procedure gives our son a 60% chance of survival with long term, life-long complications. While we had heard about the new CAR T-cell therapy cancer treatment our medical team advised against it because there is no long term data on pediatric patients, nor is it offered at Walter Reed or any local hospitals. According to the Dana-Farber Cancer Institute, Chimeric antigen receptor, or CAR T-cell therapy, is a new form of immunotherapy that uses specially altered T cells to more specifically target cancer cells. In contrast to chemotherapy which cannot distinguish between cancer cells and normal cells, CAR T-cell therapy harnesses the patient’s immune system’s ability to locate and destroy invading cancer cells. As we sat with our decision to go forward with the bone marrow transplant, this voice kept whispering to me, keep searching. There’s got to be something else, something better. I was tenacious. My husband, however dug in deep, found the right contacts and broke down every detail of all options. We kept coming back to CAR T-cell therapy. It was popping up everywhere. Every source says that it’s revolutionary, cutting edge. While I had asked our doctors at Walter Reed about CAR T-cell therapy from the very beginning they were originally very confident that the chemotherapy treatment they could offer would work and that we would never reach the bone marrow or CAR T-cell therapy cross road. Statistically, the chemo works for most (close to 90% of patients) and they were hopeful for us. Yet here we were. The next option was a bone marrow transplant and radiation. But I still kept inquiring about the CAR T-cell therapy. We were reminded repeatedly that there is no long term data on pediatric patients with this new treatment and our son’s medical team just couldn’t recommend it. No one wanted to take responsibility for our child’s life by recommending something so unfamiliar and new. And while there are multiple studies that treat pediatric Leukemia our son wasn’t a candidate for any of them. Discouraged and disheartened, my husband and I started plans for the bone marrow transplant and radiation. My husband still kept digging deeper and searching out more data even though we were close to starting the bone marrow transplant. Unexpectedly, at the beginning of December we received an enthusiastic call from one of the same doctors who had discouraged us from CAR T-cell therapy. He had just returned from a conference where he was seated next to Dr. Michael Pulsipher, the CAR T-cell specialist at Children’s Hospital Los Angeles (CHLA). After discussing our son’s diagnosis, our doctor became convinced that he should enter this study at CHLA. Dr. Pulsipher wanted us to fly out and meet with him right away. We did just that and now we have concrete plans to move forward with CAR T-cell therapy starting in January. If this new treatment doesn’t work, we’ll still take the bone marrow transplant and radiation route. However, CAR T-cell therapy can possibly heal him faster, without long term life altering side effects. This new treatment can be ugly, mean and has some serious risks; it’s going to take a toll on his frail little body. Yet if it works, he can resume his normal teenage life. He loves sports, especially basketball, and is so sad to be missing school. He wants to live. He wants to grow up and get married and have children. CAR T-cell therapy may be the only option that gives him that hope and that opportunity. It will require many flights back and forth to Los Angeles. There is a 50/50 chance he will spend some time in ICU and of course, we’re scared. There are also so many reasons to be encouraged and hopeful. We believe CAR T-cell therapy is that bridge between cancer treatment and cancer cure and we owe it to our son to take this scary step. If we don’t, we will always second guess ourselves for not trying something that could have given him a better chance of survival and a better quality of life. We have to do this for our son and every child who faces this new territory. Robert Allen said, “Everything you ever wanted is right outside your comfort zone.” Everything we want is for our son to live and to thrive. We must trust medical advancements and experts who are diligently searching for better treatments. We have to take this chance and this leap of faith. Long time Alexandria residents Andrew and Kathryn Olson are parents to two wonderful boys. Their younger son, Bradley, was diagnosed with Leukemia in July 2018 at the age of 12.
