Evan’s Story

Site created on October 22, 2018

In the early hours of Sunday, October 14th, while on vacation with his parents and grandparents in the south of France, Evan woke up very upset and with a high fever. His parents decided to take him to the hospital in Bordeaux an hour away. The astute emergency team there noticed irregularities with his blood work that went beyond just a simple fever, and worked with the hematology unit to look further into the issue. They very quickly diagnosed Evan as suffering from Macrophage Activation Syndrome (MAS), a subset of Hemophagocytic Lymphohistiocytosis (HLH).  We'll let this website explain it to you:

https://www.cincinnatichildrens.org/service/h/hlh/about

Evan suffered from an enlarged liver and spleen, which only got worse over the next few days. By Wednesday, the hospital team in Bordeaux were able to arrange for Evan to be transported by private jet to Necker Hospital in Paris, which happens to be a leading unit in treating this rare disorder. Quelle chance! 

Evan is currently under the "management" portion of his condition. This entails giving him drug and steroid therapy to regulate his condition by stopping his immune system from needlessly attacking his organs. This process should take about two weeks if all goes well, and Evan will feel comfortable and like a normal baby again after the first few days if all goes well. 

If the syndrome is managed, then he can begin the "treatment" portion of his condition. As the root cause of this problem is a genetic disorder, this will require a Bone Marrow Transplant. Without that, Evan's immune system will likely overreact each and every time he gets sick. The doctors at Necker Hospital are already working on searching for a match for Evan, and if they cannot find a perfect one, then either his mom or dad will act as the donor. 

We have received many questions about becoming a possible donor for Evan. That is fantastic, and we encourage anyone interested to go to the Be The Match website, which is the US based donor organization, and also has info on certain other international countries as well. It is highly highly unlikely that anyone we know will be the perfect 10 match that would be relevant for Evan's situation, and as noted above, anything less than a 10 match will lead to either me or Jill acting as the donor, which we are very eager and ready to do. But perhaps you'll be a perfect 10 match for someone else! 

We are so lucky to have had great care for Evan thus far, with excellent doctors and nurses attending to his needs. His Aunt Jenny flew into town to help out, his Grandma has extended her stay in town, and so many friends in Paris and from around the world have helped out as well. We are also learning lots of French vocabulary in the process!


Also, note that Caring Bridge requests donations to their website when you read our blog. We leave that to you, but note that we have already donated to the website the suggested amount for covering Evan's expected period of care, and we will continue to donate if that time extends. 





Newest Update

Journal entry by Ryan Bell

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. 

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