Car T - 2 & Blast cells - 0

Where to begin… The last few months have been information overload. It’s hard to even think of where to start. Well, let's start with Robbie's bone marrow biopsy results, the true test to confirm if CAR T-cell therapy actually worked. Two tests were conducted, one that tested 10,000 cells and one that tested 1 million. There were no cancer cells present in Robbie‘s bone marrow biopsy results. Robbie’s providers were happy to make that call and let us know that Robbie has reached temporary remission. CAR T-cell therapy loses its potency over a couple of months, and there is the possibility that Robbie could relapse. With that being said, the hematology oncology transplant team expedited prep for Robbie to be admitted for his bone marrow transplant. Robbie was released from Loma Linda Hospital and spent a week at an acute rehab center, where they deemed him strong enough to go home with assistance. As intense as his CAR T-cell therapy became, ultimately all of that was worth it, and it worked exactly how it was intended to. Modern science is truly amazing, to say the least. Robbie‘s providers are so thorough, so knowledgeable, & so caring. We’ve learned so much about leukemia in general and the newest treatments that are available. Learning about the science behind how these treatments work is truly mind-blowing. We thank God that Robbie was able to receive these treatments, as they were not available not that long ago and we had to fight SO HARD to get them approved… mentally exhausting doesn’t even feel like it fully expresses how my brain feels. It’s hard for my mind to process how advanced modern medicine and science have become. This treatment is a complete game changer in the world of cancer and it is extremely expensive… I think over the last 10 months since Robbies diagnosis our insurance company has dished out over a million dollars in medical expenses. No wonder it’s so difficult to get it approved.. as sad as that sounds. We’ve truly experienced how much the companies that are in charge of making the decisions for your necessary healthcare really would prefer to delay as much as possible, hoping for you to just die than to pay for treatment to keep you alive. Robbie is probably one of about 15 patients that have received this therapy specifically at Loma Linda Hospital. Every time any provider that has treated him asks for consent to utilize his records or samples of blood and bone marrow for research, Robbie gladly consents, and we always say, “Save the babies”. It’s very strange being so consumed by hospital life when you’re receiving care for cancer. Being part of leukemia support groups for patients and caregivers makes it seem so common and normal when you’re reading similar stories about people who have gone through the same exact thing Robbie and I have as a patient and caregiver spouse. What we’ve been going through seems common, but from research and discussion with Robbie’s mom, who has done extensive research with Robbie’s stepdad on leukemia, I have random realizations about how this type of cancer is actually not common, it’s actually very rare, especially for someone Robbie’s age. Almost every provider that he has seen mentions at some point that it’s odd for them to treat someone his age because the majority of patients they see with B cell ALL are usually much younger or much older. As for Robbie's BMT (bone marrow transplant), several high-match donors were identified through the registry. As much as his providers preferred for him to have a perfect 100% match, ultimately it was determined there was no time to wait to prep another donor when his sister was nearby and could be prepped immediately to begin this process. One thing I’ve definitely learned about leukemia is that treatment is extremely time-sensitive throughout the whole process. Relapse is pretty much inevitable during treatment until you get a bone marrow transplant. Struggling with your mental health and sanity seems impossible…regularly… when insurance companies and the certain company that took over our primary Doctors office constantly deny or delay approval of necessary treatments. There is a 50-60% chance of relapse after transplant based on the data his providers have. What gives them hope that Robbie can achieve long-term permanent remission is how well his body has recovered from his treatment thus far and the fact that he is a young, strong 35-year-old but nothing can be promised we are realizing. Honestly just saying that is unbelievable when you’ve seen what I’ve seen him go through…nightmare fuel for sure.

Ever since Robbie was released from the hospital into rehab and then to home, our days have been nonstop doctors appointments. I’m not going to sugarcoat it. It’s 100% overwhelming and traumatizing. The discussions we have to have with these providers about the intensity of a bone marrow transplant are mind-scrambling. I think the most intense appointments have been for radiation consultation and simulation. The radiation specialist was kind and thorough, but to put into perspective what Robbie would be enduring in order to receive this transplant, she described it to us as what the people of Hiroshima were exposed to, except controlled, and that made my heart skip a beat. Robbie will be receiving full-body radiation two times a day for three days prior to his transplant. His provider explained to us that they will be completely destroying his bone marrow along with any cancer cells that come with it, and Robbie will be completely dependent on blood transfusions and blood products to give his body everything that his bone marrow normally produces in order to stay alive. After treatment is done and his bone marrow has been destroyed, he will receive his sister‘s bone marrow stem cells, and they will reproduce and re-infuse into his bone marrow, and his new marrow will begin to grow and slowly start producing blood again. Science is so wild. Robbie will be completely immunocompromised and on a surplus of medications to keep all of the symptoms that could come from this under control as well as to help his body counteract any side effects that could happen, like rejection of the cells. I wish I could go into deeper detail about all of this, but it’s so much information my brain is completely overwhelmed with all of it to think clearly about explaining it. I would encourage anyone to do some research about bone marrow transplant or stem cell transplant. It’s amazing that this is even possible. I want to thank anybody who signed up for the bone marrow transplant registry for Robbie or in honor of Robbie. I wish I could properly explain the gratitude we have for those willing to do this, and I hope that it is something you would still consider for another person going through what Robbie has gone through. My heart physically aches at the thought of anyone going through this and especially for children experiencing exactly what Robbie has gone through. Small children with portacaths under their skin that are constantly poked in order to give chemotherapy treatments, the side effects from these treatments alone, and the countless bone marrow biopsies, where the provider has to dig a large needle into your pelvis and scrape your bone off to find out if there is cancer present in your marrow, It’s extremely difficult to imagine anyone enduring this… Everything Robbie has gone through literally feels like a walking nightmare most days. Many of the survivors call bone marrow transplant their rebirth and celebrate it like a birthday, which is really beautiful. We joke around and say once Robbie receives his sister’s cells, they will be able to talk telepathically or have a connection where if one of them gets hurt, the other one feels it. We are grateful for everyone who signed up to be a possible donor for Robbie and grateful for his sister, who was so willing to give Robbie the gift of life again. I’ve known Robbie‘s sister Bekah since eighth grade. She is actually how I kind of met Robbie. Never did I imagine at our little private Catholic school in San Bernardino, when I met this 6-foot-tall, super cool, eccentric girl, who walked around with a camera everywhere taking pictures of everything and wore a necklace that said Girl of God, that I would someday marry her brother, become her sister-in-law, and make some fun memories… and then her brother would get leukemia, we would be going on this intense medical journey together that would bring so much pain and distress to our family, and then she would be donating her stem cells in order to give him the gift of life again. The love I have seen from Robbie’s supporters during this whole time it pretty unbelievable. Visiting is strict and will be a bit intimidating, as Robbie will be completely 100% immunocompromised. By the grace of God, he has endured so much and has overcome unimaginable things. One of his nurses told us the other day, “God didn’t bring you this far for nothing, Robbie.”