Car T - 1 & Blast cells - 0

It’s hard to even start this blog so much has happened in the last couple of months. Robbie received his Car T cell therapy and an intense war began raging inside of his body. We are still waiting on the results from his bone marrow biopsy, but his blood tests show 0 blast cells…. Robbie’s cancer cells are called blast cells so 0 cancer cells are showing in his blood work at this time. We have not seen 0 blast cells since the first time he went into remission after he received his induction chemo back in August of 2024.

The journey is far from over, but we are hopeful that the car T cell therapy won the battle for now. Robbie’s Car T cell therapy was utilized as a “bridge” to give him a break from chemotherapy until he is to receive his bone marrow transplant which as of today will be about five weeks away.

Robbie was able to receive the treatment, but it did come at a cost & the price he paid was very intense. I can’t say we were surprised at how severe his symptoms had become after he received this treatment. Robbie had 95% Blast cells in his bone marrow before he was given 6 rounds of strong chemotherapy to remove them the days prior to receiving the therapy. We have no idea what the actual count was before he was transfused with the T cells, but this type of cancer is aggressive, and once his marrow starts producing blast cells his counts jump very high very quickly. As many of the providers explained to us before and during this process the CAR T cells go to war with the cancer cells and it is a lot for the human body to endure once the bone marrow starts pumping out cancer cells again. About 2 days after Robbie received his Car T therapy he began to run a fever of 103 to 105 at the highest consecutively for several days in a row. These high fevers also caused severe chills and he would shake uncontrollably & very aggressively. The chills and shakes would cause bone aches and headaches. By the 6th day after Robbie‘s Car T infusion, his lab work abruptly became abnormal, and we were told his kidneys had completely failed. We were advised by the hematologist following him and the nephrologist on call that this was common due to the massive amount of destroyed cancer cells from the CAR T cell therapy working as intended. His kidneys were having trouble processing out the excess destroyed cell matter so he would need to be moved to ICU to receive slow dialysis for several days. This was very scary but we were assured his kidneys would heal and go back to normal once the dialysis was able to clear them out. As that day went on the neurological side effects began to set in. He became disoriented and started hallucinating. He could not answer the same questions that he was given every day such as: what is your name?, What is your birthday?, do you know what month it is?, do you know where you are?, Do you know why you’re here?, Can you count backward by tens starting from 100, etc. He also was unable to write the same sentence he had written every day since he had been in the hospital, which was “I love Xochitl & Rowan.” Robbie was able to talk but was very disoriented when he moved down to ICU that evening. I went home to rest, to let Robbie rest, and to be with the kids as the nursing staff told me they would call me if anything came up and I needed to come back that night. That day was full of intense emotions and anxiety for Robbie‘s family and I. I probably slept about two hours that night, which has been normal actually the last couple of years… not that I’m used to it or that it feels good but it’s inevitable that if I do fall asleep most nights I either experience sleep paralysis, which then fully wakes me up or it feels like it’s been hours but by the time I look at the clock, it’s been an hour or two if I’m lucky… I think that night I kept my phone under my pillow, anticipating a phone call at any time with bad news. The next morning, feeling somewhat hopeful that I had not received a call, I went to his ICU room and was startled to see it crowded with doctors and nurses. His attending nurse informed me that through the night he had stopped verbally responding, but would squeeze her hand and follow directions without being verbal when she asked. Different types of providers were trying to speak to Robbie and he would not respond. I soon realized they were calling him Robert… I called out Robbie to him, and he looked at me so they realized calling him Robbie would get a better response from him. The neurologist asked him many questions that he could not verbally respond to, but when asked to hold up two fingers or to squeeze his hand and do things that did not require him to speak he was able to do them properly. Unfortunately, they were concerned about him having a stroke or seizure, which are common for this type of therapy and made the decision to intubate him primarily so his body could rest and heal properly. He had been fighting going to sleep for about 48 hours straight and his body needed to rest. I was rushed out of the room and pulled into another office with the palliative care Doctor who just let me cry and try to process what was going on so suddenly…. I think I sat in that room for hours. I just remember crying so much my head began to pound and at some point, I had the strength to go back in to the ICU finally seeing what it looks like for someone to be intubated with a breathing tube… Robbie was hooked up to so many things… he had seven lines accessed on his body between receiving 24 hour dialysis, fluids, blood products, pain medication, and blood pressure medication. At that moment, I thought I was going to lose my husband and have to explain to my daughter what was going on. It’s honestly very hard to recall a lot of what happened during that week. Every day felt like a nightmare I could not escape. The time I was able to spend at the hospital was bittersweet as I felt a tremendous amount of anxiety being away from the hospital knowing the condition Robbie was in and at the same time, experienced extreme anxiety being at the hospital feeling helpless while I watched him suffer. The ICU department is no joke and I have an unbelievable amount of respect for anyone who works in one. It’s hustling and bustling constantly, you see and hear a lot of scary things. My days were spent crying and talking to Robbie letting him know how sorry I was that he was going through this and how much I missed him. I absolutely developed PTSD from all of the constant beeping of machines while he was in ICU, it still makes me jump now when I hear something similar because when things were beeping, while Robbie was there, it meant something was wrong. I would talk to Robbie and tell him what was going on, how much I missed him, & played voice memos from our daughter for him. If you know Robbie, you know he likes to talk and going an entire week sitting next to him every day and not hearing him speak at all was the weirdest week of my life. It made me feel so guilty thinking of the times I told him he would talk too much because, in that week, I would’ve given anything to just hear him talk one more time. He was not responsive during that week when asked to squeeze mine, his mom’s, or the nurse’s hand while we spoke to him and we tried every single day. During that week, we were told Robbie suffered some minor brain swelling but had no seizure or stroke activity. He would shake his head violently which they said was probably neurological involuntary movement, but I truly felt like Robbie was somewhat conscious and super mad that he had that breathing tube in and just wanted it out. In order to keep him safe so he wouldnt rip out any accessed IV’s or his breathing tube his hands were strapped to the bed. He eventually confirmed for me that he remembered shaking his head because he was so confused and uncomfortable with that tube in his mouth/throat. He also would open his eyes very wide and open his mouth, but no noise would come out. It looked like he was screaming, and it was so awful to feel so helpless during those moments I could do nothing to help him. I fully understand the word “traumatized” now having to experience what Robbie went through from my perspective while he was intubated will give me nightmares for a long time… i’m still having difficulty moving passed the trauma that I experienced during that time. By the sixth day, his lab work had greatly improved. The swelling was going down, and his kidneys were functioning again. His nurse asked me to talk to him a lot that day and if I noticed anything to let her know. They were concerned that he had not followed any directions they were giving him every day. On that day, I spoke to Robbie a lot & he opened his eyes and looked at me. He gave me this soft blink that he does from across the room often. It’s hard to explain, but he’s done this slow blink our entire relationship. It’s a look he gives me to tell me that he loves me when we’re far away from each other. I asked him to blink for me at that moment, and he squeezed his eyes so tight I knew he heard me and then he fell asleep. Several hours later, I was sitting next to him specifically playing songs that I knew he liked. When a song came on from his favorite band, Death Cab for Cutie, he popped his eyes open again. I knew he was awake and asked him to blink for me if he heard me and he did, he squeezed his eyes so tight to let me know he was there and then he fell asleep again. I called the nurse and I told her I swear, I know he heard me those two times the way he looked at me & the way he blinked his eyes so tight to let me know he was trying so hard I know that was purposeful. She believed me and that evening they took him off of sedation, and he finally began to follow their directions when asked to squeeze their hand and began to respond to his mom‘s presence that night. The next day they waited for me to get there and took him off of sedation fully again and he woke up, he saw me, he heard me, & he responded to everything I asked him to do. I’m so grateful that God has given him so many opportunities to continue this life with me and our children. I’m so grateful that Robbie is so strong. He has endured so much since this diagnosis and before, that has burdened him throughout the journey but he’s still here and fighting so hard. Every day since he has woken up, things have gotten better, but it is not easy at all. The day they were able to take his breathing tube out he asked me where he was and what had happened, but I knew he would not remember. The second day he woke up again, and I could tell by the way he was looking at me that he was back and understood what I was explaining to him. He was in shock that he had been asleep for so long and about everything that had happened during that time. It took him a few moments to process it, and then he looked at me and said “This is so weird but I understand now I understand what happened and where I am.” He stopped for another moment and then looked at me and said “How have you been? Are you OK?” He has to work very hard to get back to where he was. The doctors say he will make progress every day that passes. I’m grateful for all of the support I received during that difficult time. It’s impossible not to shut off from the world when things get that intense. I read about similar Car T cell through leukemia support groups who had gone through the same side effects from Car T and gave me hope during that time. Even at that it is difficult to process when you’re watching ypur husband experience the worst case senario. Most days I feel like I was/am drowning. Robbie was discharged from the hospital yesterday recovering and receiving some extra care at an acute physical therapy rehab center down the street from the hospital. We are hoping he can return home within a week, but it all depends on the progress of becoming more independent as he gets stronger and how quickly he is able to do things on his own. Right now, he does need assistance with a walker or a wheelchair until he can build the strength back up into his body.

I’m trying to recover from this traumatic event. I’m glad Robbie does not remember much of his stay in the ICU. He told me at times he was conscious and was shaking his head on purpose, and that he did hear me when I was speaking to him. Unfortunately, I remember all of the worst parts and his doctor told me that is a burden I will have to carry with me for a long time. This whole journey is so hard to navigate as a wife, as a mother, as a caregiver… I feel like I’ve done and said so many things out of desperation, it stresses me out to see things that I’ve posted the last few months, to be honest, it just reminds me of the extreme elevated stress I’ve under during throughout all

of this. It is crazy to feel the physical weight of all of the things I have had to worry through this whole process and right now. I hope and pray Robbie’s Bone marrow transplant goes as smoothly as possible, but it does come with its risks. The only comfort I feel is that there is no risk of any of the neurological issues that he had with the Car T Cell therapy. For now, we try to rest. Robbie woke up several days before our daughter’s birthday and was able to speak to her, which was all she wanted for her birthday. Trying to navigate how to talk to her about why she had ‘t spoken to her dad in 10 days was beyond difficult but he woke up just on time which is very much like him. We are thankful Robbie has made it this far and hopeful that he can finish this journey soon on the survivor side. He has many physical and emotional battle scars from what he’s been through and has a crazy story to tell one day when our kids are older and to those he chooses to share with. I have to remind myself that very day is a blessing and we are grateful to be together as a family.