Strength comes in many forms and is something that the Ronald McDonald House of Chapel Hill (RMH) sees daily. For Alex and Wendy Pecqueur, strength comes in the tiny body of their three-year-old son, Wesley.
Wesley was diagnosed with a rare blood disorder called Severe Congenital Neutropenia, a genetic disorder where the body does not produce neutrophils. “Wesley was born at 25 weeks which was incredibly scary, but in the long run turned out to be a blessing,” said Wendy. “Neutropenia is not something easily diagnosed. It takes months of constant blood work to see if there is a pattern of abnormality in the cells and then eventually a bone marrow biopsy. Because Wesley was in the NICU for three and a half months, doctors were able to get a good blood work pattern established early. This is a disease that is usually not diagnosed correctly until the child is older and has had lots of illness and infections…my son was able to get a confirmed diagnosis at five months old.”
After being diagnosed, doctors determined that having a Bone Marrow Transplant would be the only “cure” for Wesley. “This is still a new science for treating this specific condition…so new in fact that our son was the first BMT at UNC for this specific disease,” said Wendy. Bone Marrow Transplants require the patient to be within close proximity of the hospital for at least 100 days as they recover. Because the Pecqueur family lives over two hours from Chapel Hill, they were referred to stay at Ronald McDonald House.
“We were very impressed with the House! The staff was super friendly and gave us a tour of the grounds. The House has a beautiful outdoor space and playground for the kids (which my son LOVED!) Everyone was so nice to us during our extended stay. We were in one of the apartments which was great when we left the hospital after his transplant. It allowed us to feel a little more normal having our own space away from home (especially after living in the hospital for 6 weeks). We were “residents” there from late July to early October 2019.”
The Pecqueur family said the House was more than just a place to stay. It gave them great peace of mind knowing they would be able to be close to the hospital and not have to stress about mounting hotel and transportation bills.
“RMH literally has a bus or shuttle that takes you to and from the hospital. This was SO convenient and made frequent trips to the hospital easy. Having a sick child is also heavy on your bank account. Being able to stay at RMH was a life saver for us. We lived away from our house for about four months total…the bills there don’t stop while you’re away. It was nice to know that we could be in a nice, clean environment after my son’s transplant and not go bankrupt!”
RMH guests that come for extended stays at our House truly become a part of the family. At the House, they find an empathetic circle of support, shoulders to cry on, and some of life’s biggest cheerleaders. Wendy said that she and her family have cherished memories of their time at the House, even during such a difficult time.
“We used to like walking around the common area outside and letting our son play on the playground. RMH had a wagon car that my son loved to be pushed in while we blew bubbles at him. We also LOVED when the therapy dogs came to visit…we were especially fond of Stuart the dog! Wesley liked to pet them and get lots of puppy kisses. Someone was also always baking in the community kitchen, and we greatly appreciated all the cookies left out. (And I would make lots of cupcakes in my kitchen to return the favor!)”
Wendy said that one of their favorite RMH memories is when Wesley celebrated his second birthday at the House! She said the staff went out of their way to make his celebration special. “Wesley’s second birthday was a great memory when they gave him his gifts and sang. The staff gave our son the most perfect gift without even knowing it. They gave him a build-a-bear that was dressed as a ninja. My mother-in-law always called Wes the little ninja, because he kicked me like crazy while I was pregnant. She sadly passed away a few months before Wesley’s transplant, and it was like she was there with us when he got that bear.”
“I would like for people who have never stayed at the House to know that you get home cooked meals just about every night of the week from volunteers. This really helped out since we were taking my son to four to five medical appointments a week! We were lucky to have an apartment with a kitchen to be able to cook for ourselves, but sometimes you are just so drained. It’s nice to be able to have something prepared for you. Being able to stay at the RMH took a lot of stress off me and my husband during the most stressful time of our lives. It allowed us to stay in a clean and safe environment so that we could focus solely on getting our son better. You should not have to worry about your finances or living situation while you’re trying to save your child’s life.”
Fast forward two years and the donor’s bone marrow has completely taken over Wesley’s immune system (which is the best outcome for his disease). “We are about to celebrate Wesley’s two year post transplant anniversary. This is also the milestone we need to reach to have the opportunity to find out who our donor is, because it is all anonymous. We currently have checkup appointments once every three months. This will continue to lessen until we are at once a year which will be for life. We have been able to progress and space out appointments quickly, because Wesley has done so well with his new immune system.”
While COVID-19 has made life especially stressful for the Pecqueur family, Wendy says that she and Alex feel extremely lucky that Wesley’s transplant was completed before COVID. “I can’t even imagine going through a transplant while in a pandemic. It’s emotionally draining and stressful enough during normal times.” The last two years have been more than difficult for the Pecqueurs, but they find hope in the tremendous progress that Wesley has made. “The future for our son is very bright!” said Wendy. RMH is grateful to have been a part of Wesley’s journey and can’t wait to watch him grow and continue to inspire others with his bravery.