On March 3rd we traveled over 400 miles to meet with the Children’s Hospital of Pittsburgh for a liver transplant consultation. Based on the information we received before the trip from our Charlotte oncologist, Jackson more than likely would not need a liver transplant based on his current treatment progress. Therefore, this consultation was simply a precautionary measure just in case we needed to ever consider these options in the future or needed to conduct surgery with a team of experienced liver specialists.
Jeremy and I breathed a sigh of relief and viewed the trip as an opportunity to gain useful information (that we would likely never need again) and explore a new city that we had never visited before. After all, we were both still waiting to hear back from our oncology team and surgeon regarding hopefully scheduling surgery to remove Jackson’s two tumors soon.
We arrived in Pittsburgh and attended approximately 16 appointments over the course of 3 days. Our days began early and ended late with back-to-back appointments with several liver transplant team specialists - surgeons, oncologists, hematologists, hepatologists, psychologists, pharmacists, neurologists, and the list goes on. We were all overwhelmed and exhausted by the end of each day.
Jackson was a trooper but honestly did not feel well for the duration of the trip. He had several vomiting episodes, so we tried to keep him as comfortable as possible given the circumstances. We stayed at the Ronald McDonald House of Pittsburgh which was connected to the hospital, making it easy to get out of the hospital and to our room for quick clean-ups as needed.
Unfortunately on day two of our meetings, conversations began to take a drastic turn. In two appointments, we spoke with the oncologist and transplant surgeon who made strong preliminary recommendations leaning towards liver transplant. Then the entire board of specialists met together at the end of our consultation process to determine a final recommendation. Their proposal was to move forward with liver transplant considering the sizes and locations of Jackson’s tumors. Attempting to surgically remove the tumors would have potentially harmful consequences and they were not willing to risk Jackson’s health and livelihood.
This was the exact opposite of what we had been told all along, sending us into complete shock. We were frustrated, confused, and needed answers.
It was just all so overwhelming to hear, especially since we had been told just DAYS before that chemotherapy was working well and that surgically removing the tumors should be possible. Once again, we were shattered. How is it possible to still receive bad news? We were literally just celebrating the progress that Jackson was making, and that was now a mere figment of our imagination.
Liver transplant is such a complex surgery to complete and requires a lifelong commitment to treatment and care. The things we heard over the course of the three days would bring tears to your eyes, like a nightmare that you can’t seem to shake off. It is so incredibly frightening, and Jeremy and I kept telling each other, “This can’t happen. We can’t let this happen. We can’t do this.”
It was too much to fathom. Too much for us to handle. Having to watch our baby boy endure such an immense level of pain would be almost unbearable.
What seemed like a light-hearted trip turned very dark very quickly. Liver transplants cannot be completed in Charlotte and would require us to be away from home for the surgery and post-operative recovery process for about three months. Yes. THREE MONTHS.
Considering the complexities surrounding transplants, Jackson would have to be on medications for life to keep his donated liver alive and would have to attend regular, lifelong follow-up appointments with his transplant team. Jeremy and I plan to also undergo evaluations to see if either of us may be a live donor match, meaning possibly two Simpson’s could undergo major surgeries to continue to give Jackson a chance at life. As parents, we are so scared to potentially go through all of this, but there is no greater gift we could give to our son.
Please keep us in your prayers as we continue to process this news. We will also be traveling to Vanderbilt Hospital to meet with their pediatric liver transplant team soon to receive a second opinion and consider the possibility of completing the liver transplant & recovery, if needed, in Nashville, Tennessee. If you have any experiences with pediatric transplant, we would love to hear your story.
