When starting Payton's treatment plan in July we signed papers to enroll her in a case study for High Risk Neuroblastoma. This case study would give Payton all the same treatment plans as any other child with her same diagnosis, but she had a 50% chance of being selected for what is know as MIBG therapy.
MIBG therapy is a type of liquid radiation that is already in the treatment plans for Neuroblastoma patients if the cancer returns. Since the MIBG therapy seems to work well with Neuroblastoma second time treatments, doctors are researching if adding the therapy to a patients first round will help the odds of cancer return, or even curing Neuroblastoma.
Right before we started round three of chemo, we sat around the table with Payton's team of doctors and found out she had been selected for the case study. At this point we didn't know too much about MIBG or everything it involved. We did know that Hopkins was not equipped to perform the treatment and we would need to go to Children's Hospital of Philadelphia (CHOP). We also knew Payton would likely be sedated for the treatment and that we could opt out of the case study at any point up until the MIBG injection started.
We both decided that if the doctors think this could help cure Payton, we want to do everything we can to give her that best chance. So we said yes and Payton was scheduled for MIBG on Thursday, October 13, 2022.
CHOP had contacted us to go over some details of MIBG and get to know Payton a little better, we also had an in-person meet with the MIBG Neuroblastoma team. Both our meets went well, we really liked the doctor in charge of MIBG and felt confident. We were a little nervous after hearing Payton would likely be sedated for the whole treatment to help keep her safe and anxiety free. This would likely be between four to seven days of sedation. Of course this seems crazy but made sense at the time. In adults or older children sedation is not needed. The only reason Payton would need sedation is due to her age.
Like I said MIBG is a liquid radiation therapy that is injected in the patient to target and kills Neuroblastoma cells. Once the MIBG is injected the patient would have unsafe levels of radiation for direct contact with others and many safety rules would be in place. Rules including bed rest, staying still, no direct contact with others, etc. Due to Payton age the doctors would sedate her until she was at a level safe to be around others with no restrictions. She would not understand to stay in a bed with all the rules in place. And like I said at the time it all made sense and sounds like the safest way for Payton to have success with the treatment.
We headed to CHOP on Tuesday, October 11th for some pre-op type appointments and checked into the Ronald McDonald House. Wednesday, October 12th Payton was schedule to be admitted to the ICU and for an operation to get ready for MIBG the next day. Payton has a central line known as a Hickman which is typically used to draw blood and infuse medication. The MIBG study requires the doctor to see the injection site and observe while it is happening. Payton's hickman is located on her back and they could not use this as an injection site. She went to the operating room on Wednesday for the doctors to place what is called a PIC line in her arm (basically a type of central line that they can see), a catheter in her bladder to safely remove MIBG right away, and a feeding tube in her nose for administering medication every four hours.
Wednesday was a very hard day for Payton and us both. Payton's procedure was scheduled for later afternoon (maybe around two) and she was not allowed to eat or drink until after. So when you have a two year old who is not allowed food or water until after noon, you are also not allowed food or water until after noon. Payton was extremely irritable and upset the whole morning. We were in a completely new hospital that was unfamiliar and seem to be confusing and hard for parents to navigate. Between moving to different parts of the hospital for pe-opt appointments to the security and ID-badge confusion, we were all a little stressed on Wednesday.
Payton's PIC line procedure went well and we meet her in the ICU as she was waking in around 5:00pm. The anesthesia team confirmed what I mentioned to them in pre-opt and told me Payton was a fighter and extremely strong. It sounded to me like she was fighting the sedation just like she had done during her steam cell harvest a month before. Like I have said many times, my girl is feisty and strong!
We spent Wednesday night in the ICU getting the room and Payton ready for MIBG and sedation starting at 8am. Payton has just woken back up from anesthesia and seemed to be ok. We ordered her food and just needed to keep her in bed without pulling any lines. She was a little restless and did not want to sleep. We took turns that night at Paytons side, she was awake and watching her iPad movies until about 3am. She was showing signs of a "croup" like cough, as she typically does after having a breathing tube for sedation. She was also just a little dazed and kinda sad that night.
We woke up (or did we sleep?) around 6:00am as the doctors and staff continued to prepare the room and Payton for her therapy. The room was lined in plastic, literally every surface that would be touched was wrapped in plastic, the floors had plastic sheets taped down, and all equipment was plastic wrapped. Payton would stay in the hospital crib during treatment and would have some lead line shields around the bed, to protect us from the radiation.
The doctors started coming in to get consents on sedation from us and asking about how Payton was doing that day. My mom gut did not feel like Payton was ready to be sedated for a week straight. For this case study, the goal was to safely sedate without a breathing tube and I knew she would eventually need the breathing tube. We told the doctors that Payton barely slept and was very congested and "croup" sounding.
Sedation was scheduled to start at 8:00am to get her to a good level before MIBG injection scheduled for 1:00pm. The doctors were talking in the hallway and nursing staff was still preparing the room for treatment. Around 8:30 the team of doctors came back in the room and told us they did not think Payton was ready for sedation. With her congestion and croup like cough (from sedation the day before) it seemed that the risk of a week long sedation was not worth the potential benefit for Payton. I totally agreed and honestly was so relieved!! It just didn't feel right, the sedation, the room, Payton, CHOP, nothing felt right.
So that morning we discharged from the ICU at CHOP with the option to reschedule the MIBG treatment for after she completed round four of chemo. Jeff and I both knew in our hearts all signs were telling us no, this treatment was not worth the stress on Payton. We headed home from Philly that day so thankful and happy Payton was felling good and enjoying everything. We declined the rescheduling of this treatment as it seemed like the best choice for Payton at this time.
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