Isaac's story started before birth. I had a blog started back then where you can read from the beginning if you want. http://isaacsheart.blogspot.com/.
In short, Isaac was diagnosed with Hypoplastic Left Heart syndrome in November of 2008 while he was still inutero. Isaac was born in February 2009 at 6 lbs 7 ozs . He was found to have other heart anomalies at birth and therefore could not go through the planned surgeries to rewire his heart. His first open heart surgery (Hybrid Norwood) took place at about 8 days old. This was only to bridge him to a heart transplant which was the ONLY option. Now, doctors and other parents might say there is another option but we had already come this far to just let our warrior fade away. It may have been an option but not for us! At exactly 3 months after being listed for transplant, we received the call for his second chance at life. A bittersweet moment...organ donation. I'm sure you all know what I mean :-( We constantly pray for the donor family and their selfless decision. His new heart still beats strong....10 years and counting. If you have followed his story or know our family, you know that Isaac has had other medical issues...feeding tube, pulmonary stenosis, eosinophilic esophagitis, developmental delay, behavioral issues...list goes on. Although, his latest diagnosis is really the main reason for documenting his journey again. The 2018 holidays were rough on Isaac. He was sick most days with what his doctors thought was viral and possibly pneumonia. He took antibiotics and some symptoms went away but what worried us were the unexplained fevers, sudden fatigue, and worsening of (what we thought were)"growing pains" in his legs. We finally decided to drive him to Houston in mid-January. After many cultures, xrays, scans and tests, he was found to have high levels of the EB virus (mono) in his blood. For anyone else, this virus is self limiting and runs its course but not for Isaac. Since Isaac is highly immunosuppressed for his transplanted heart, this virus was wreaking havoc on his body. He was diagnosed with PTLD (Post Transplant Lymphoproliferative Disease). Another diagnosis that is just another word for cancer. Another waiting game to diagnose the type and stage. Pet scan and bone marrow biopsy confirmed stage 4B Hodgkin's Lymphoma. So even if we are at the "end" of his cancer journey, for his sake, I still want to document on this website. And of course anyone else that wants to follow along. Stay tuned.