Many of you know that we have been battling some health issues with our son, Fenix. But what does that mean? What is going on? Well, I thought I would break it all down for you in this blog post, and update as we journey on. So, here’s the 411...
In the last few days of April of this year, Fenix started to feel a little off, and then turned yellow. Big red flag, right?! Or should I say yellow. We took him to the pediatrician for labs. The following morning we called to let them know he had vomited the night before, and they told us they had received the results and we were to go to Duke Children’s Hospital immediately. Our liver levels should roughly be somewhere between 8 and 40. Fenix’s were 2,500. Long story short, they diagnosed him with Immune-Mediated Liver Disease. His immune system was waging war against his liver. There were many scary moments during that battle. One we thought we were losing him. It was a long 6 weeks, and we were two days away from starting treatment when his levels dropped, and his liver began repairing itself. That was one of the greatest reliefs of my life.
As mothers, we are our child’s biggest advocate. So, as the incredible doctors did their jobs, I did mine. I had been charting all the numbers everywhere. I noticed his blood counts had been on a slow decline, so I asked them to look into it. The next day I received a call we were being transferred to Hematology/Oncology. We met with them within days, and found out that his immune system had moved on to attacking his bone marrow. This happens sometimes with Immune-Mediated Liver Disease, and sometimes one can recover from it. It’s a lot like an autoimmune disease, but it’s a different set of cells attacking. We moved forward with biopsy number one just a week later.
Think of bone marrow as a factory. This factory is responsible for making our red blood cells, our white blood cells (we will focus on the neutrophils), and our platelets. There are all stages of maturity of the three in the marrow. A healthy person’s marrow is packed with cells. It has about 90% cellularity. Fenix’s first biopsy showed him having only 5% cellularity. That result along with very low blood counts confirmed the diagnosis of Aplastic Anemia.
When some hear anemia, they think, “Give the kid some steak, and he’ll be fine.” I thought that to some degree at first! I wish it were that simple. If the body continues to decline with no recovery, it’s not long before serious complications begin. The body cannot fight infections or germs of any kind without white blood cells. Neither can oxygen be sent throughout the body due to low red blood cells. The risk of spontaneous bleeding with the smallest bump or injury increases drastically without platelets. The first sign of fever - emergency department. Odd bruising or a fall - call the dr. Paleness and shortness of breath - go to the dr. Put simply, #bubblelife. If left untreated, a person with Aplastic Anemia has about a year. The only real cure is to find a matched donor, and have a bone marrow transplant. So, that’s what we’re doing.
We all have been tested, and Roman, Corinne, and Gracie are all perfect HLA matches. After further testing, the drs decided to go with Corinne. Work ups began the week before last. We have been at Duke almost every day. So. Many. Tests. One of which was a second biopsy. That biopsy was to just confirm what we already know before moving to transplant. That biopsy, however, didn’t give the answers we were looking for. It was inconclusive. So, Fenix will go in for a third biopsy tomorrow morning, only this time they will go into two different places. If all goes as planned, we will get those results Wednesday, go into the OR for his central line placement on Thursday or Friday, and begin chemotherapy on Saturday. Yes, I said chemotherapy. Fenix will have to go through chemo for 4 days before transplant to kill all existing bone marrow before receiving the new marrow. If he doesn’t have the existing marrow killed off, the new marrow won’t stand a chance. Though it’s only four days of chemo, he will still lose his hair, get very sick, and possibly be sterile. After chemo is completed, he will receive his sister’s bone marrow, and be on the road to recovery. There are weeks of that recovery that are going to be very rough on him. I won’t go into detail, but he will get sicker before he gets better. After about a six week stay in the hospital, he will be discharged to the Ronald McDonald House with us for another 2 months or so. It’s a long journey, but this procedure has a 95% success rate. We are so grateful for that!
This is a lot of info. I hope it paints a clearer picture as you follow our journey. We have had ups and downs, twists and turns throughout this entire year. It hasn’t been easy, but God has been right here the entire time. He has held us up and strengthened us in ways I never knew were possible. There have been really sucky conversations, and there have been opportunities to shine. I will try to keep you all updated as life unfolds. Please continue to pray for our family, for Fenix, and for the doctors as we walk the road ahead. We thank you for all of the love and support. There are no words to adequately describe our gratitude. 💕
Until next time...
