It was two years ago that we brought Evan to the emergency room in Bordeaux in the middle of the night. Today we celebrate a very happy and health little boy, and reflect on all the great support from family, friends and medical staff that got him to this point.
So first update in almost a year, and thus first for 2020. My goodness, 2020. When Evan first got out of the hospital in February 2019, I talked about how hard it was for me and Jill to have to continue to constantly protect ourselves from illness to the best of our ability, in order to protect Evan, since he had no functional immune system. Now we just call it "social distancing", and everyone is hip to it (well most everyone). We are so thankful Evan is not in the hospital during this pandemic, and we feel so much for the patients and health care workers who are.
Through mid-May, Evan continued to not swallow any solid food, and we were pretty much pumping ~80% of his nutrition to him via his G-Tube in his stomach. The medical staff was comfortable with that, because the main concern was that Evan continued to grow. However, after some negotiation, in early June we started a plan to wean him some from the forced feedings, and see if that would trigger some natural appetite, while trying to avoid significant weight loss. Thankfully, that plan worked. We saw huge improvements in Evan's desire to eat food, and ability to swallow it, within the first few months. He has plateaued a bit the past few months, but at this point we only pump about 20% of his nutrition, and we keep slowly chipping away at that number. So we are really happy with his progress on that front.
Evan took his last dose of steroids in mid-September, and is now completely off medications, other than some vitamin and iron supplements. One major milestone met! Also, his new immune system has built up to the point that the medical staff decided he could start receiving his vaccinations again. So just last week he got his first round of vaccines, and he will continue that process until he fully catches up for his age, probably around next summer. Another major milestone in progress!
We had a pretty severe scare in September, really our first one in his whole recovery process. Evan had a growth on his finger, a mole that appeared earlier in the year and started to grow quite quickly. It was decided in September that a biopsy was necessary to remove and analyze the growth, requiring Evan to go under anesthesia and into the operating room again. We know that due to the chemotherapy at such a young age, and massive amount of steroids he took for two years, that Evan will always be at higher risk for cancer and other complications. But we weren't ready for that. Thankfully, the results came back benign, and they were able to remove the growth with minimal scarring to his finger.
Attached are some photos of Evan, from his 2nd birthday on until today. Also, I added one YouTube video so you can see him in action. He's a wonderful boy, and a pretty typical one as well. He loves all kinds of vehicles, and his favorite day of the week is garbage truck day. He took a while to start talking, but since March, his vocabulary has blossomed. His Granne (Grandma Anne) has been around since September 1st helping us out, and he has loved having her around. We hope to get a lot more family time in the near future, though we are from the only ones struggling with that right now.
Finally, but definitely not least...we now know Evan's donor. Her name is Emelie, she is Swedish, and is married with two darling young girls. Evan and Emelie got to meet for the first time via a Zoom call just a few weeks ago, and we got a chance to say thank you. But that all deserves a separate blog post, so we can shine the light on Emelie that she deserves, and I will follow up with that one later in the week.