Marco H.
Hi, my name is Marco and I’m a 9 year old in need of a lung transplant.
When I was 5, I was diagnosed with high-risk Neuroblastoma and underwent 2 years of cancer treatment. It started with 6 months of chemotherapy, a flight across the country to surgically remove my abdominal tumor, a Bone Marrow transplant, radiation, and then 6 rounds of immunotherapy.
Luckily, the treatment worked and I made it out alive! 2023 was a great year for me, I got to go back to 2nd grade and see all my friends, both new and old. I missed them very much since I had to skip 1st grade while I was staying in the hospital.
Everything was going great until I developed a cough and started having trouble walking up the stairs in school. My mom took me to the doctor and we found out I have a disease called Pulmonary Fibrosis from all the cancer therapy I received.
They say it’s extremely rare, not many doctors have seen a 9 year old with this condition. My mommy had to bring me all the way to Shands Children’s Hospital at the University of Florida just to find someone who knew how to help me. It’s very far away from my home, my dad, and my brother and sister but I’m grateful she did because they told us they could help me after all hope was lost.
The doctors said I need a Lung Transplant now, and without one I may not make it to 3rd grade. They put me on the transplant waiting list and my mom and I have to stay in the hospital until I get new lungs. Afterwards we have to live here for an additional 3 months for post surgery treatment, and the doctors say it could take up to 3 months to even have the transplant surgery. My health insurance is willing to pay for the transplant surgery only if it is done in Texas or Boston- not here in Florida where I live and am staying.
Update March 2024:
Day 3 on ECMO and he is like a whole new boy. He will have to stay on this until his transplant, but it’s nice to see him happy again.
September 2024:
May 30 got the call that his lungs were available and he received a double lung transplant
Day five post transplant
Day 5 post transplant and Marco’s daily walk to Aubrey is back in action! He surprised us with how far he walked today, nearly the length of the entire unit with only one mini break. He is still on ECMO just to give his heart and lungs optimal time to relax and recover, but it will be off soon. His kidneys are great, he gained 3.9 kilos, and the last 2 chest tubes should be gone shortly. I couldn’t ask for a better recovery, I’m so proud of him and all the doctors caring for him. It really is a team effort, from top to bottom, and this boy would not be where he is today if it weren’t for them. Crossing my fingers this remains a smooth road to discharge, but even if a few speed bumps happen, it’s ok. He will be ok. We will still go home. Everything will still be alright. Now that my son can breath again, nothing in the world can stop him.
Day 14 post transplant
Day 14 post lung transplant and here we are again… intubated and stuck in the bed. Only this time, it’s not because he’s sick, it’s strictly to make him stronger. He needs more muscle strength in his ribs and everywhere else in order to expand those new lungs entirely, something he can’t do on his own right now.
A message from Marco:
Day 50
It is Day 173 in the hospital and it is finally time to start packing and preparing for our Great Departure! 50 days ago, Marco received a new pair of lungs from an extremely generous donor family. He defeated death a couple times, got a couple surgeries here and there, and gained a massive clamshell scar along the way. We went through both light and dark, ups and downs, and the uncertainty of not knowing whether or not he would gets his lungs before it was too late. What feels like a never ending journey is finally coming to an end, thank God!!