Hello All, so it has probably felt like a while since you have received an update from the Kinchlea family so I thought it was high time I reconnect with you all. We have received a wonderful summer of peace. We know that is a clear result of your constant prayers, We have certainly had some moments of difficulty through my pregnancy but in regards to Daniel’s health we have been blessed.
As many if not all of you know our beautiful daughter also rushed into the world on August 17th. Gwendolen Elizabeth Hope made her appearance at 35 weeks gestation (yes…as predicted another premature baby) but she was healthy and beautiful. I was able to have the delivery I wanted and hold my precious babe the moment she was born. Unlike with Daniel, where he was rushed out of the room immediately and I couldn’t see him until hours later.
But most importantly the doctors and nurses very successfully were able to collect and bank the umbilical cord blood for any future potential bone marrow transplant Daniel might need. Having that blood stored in a bank in Toronto is honestly a sigh of relief for us. Because even if, Daniel does have to have the bone marrow transplant the success rate is so much higher because of the perfect match Gwen’s cord blood provides for him.
Daniel has had a great summer of few illnesses and so we are reaching a record of 3 months without steroids!! He has been his happy self, he has lost weight and has also had his hearing tested and all of these things are now normal.
We have had family and friends come around us, by providing meals, and helping in times of financial difficulty by providing gas cards to help with our trips to Toronto. Praying with us and sending words of encouragement. Even friends and family gave towards the cost of cord blood banking and words cannot express our gratitude. We have been so encouraged and loved upon this summer.
We do still however covet your prayers, the thing to remember is that despite a wonderful summer Daniel on the inside is still fighting with two rare illnesses, and with his immune system suppressed by medications we are preparing for the next steps as we head into cold and flu season. Up until now the environment has played a big factor in Daniel’s health and it wasn’t until the fall of last year that we start to see Daniel’s health issues arise. We know we can weather any storm, as a family we have faced incredible odds and beaten them, with faith and love and strength through prayer. So we know that we can get through anything together.
In October we will be meeting with a geneticist in Toronto who will do a full analysis of Daniel and also talk to us about what to expect when the genetic profiling of our family returns. Than we wait for the genetic profiling to come back and continue to treat any signs of MAS with steroids should Daniel get sick. Hopefully, when the genetic profiling comes back we will have a better understanding of whether Daniel will in fact need the bone marrow transplant in the next year, which will than determine what our year will look like and when that will need to happen. After speaking with the pediatric oncologist we understand that London Children’s Hospital does not perform pediatric bone marrow transplants and so it would need to be done in Toronto at Sick Kids with approximately 4-6 weeks of recovery in isolation.
So we are so thankful that as I finished my pregnancy and we now have our beautiful baby girl here that we have had a summer of blessings. We are aware of what the future may hold and that we need to continue to pray as we face each day.
Also, for anyone who is wondering Daniel is in LOVE with his baby sister! He needs to give her a kiss each night before bed and is always trying to peer into her crib or share very large toys with her.
For anyone interested Gwen means: white, fair, blessed and dolen means: ring, circle, eternal. We couldn’t think of a better way to describe what she means to us than “Eternal, Blessed, and Hope”
Thank you so much again to everyone who has continued to remember us in your prayers and has celebrated with us during this special summer of answered prayers.