Last week Fox4 News aired a story about how Bo’s healthcare was affected by the government shutdown. Bo is in need of a blood test that will help doctors decide whether to start him on a drug called Rituxan. This drug could make Bo well enough to receive a bone marrow transplant which could give him a new, healthy immune system. This blood test is so specialized that it can only be done at NIH. NIH is a federally funded hospital and its lab is closed because of the shutdown.
KCTV5 and KMBC9 also covered the story but Fox4 Health Reporter Meryl Lin McKean really did her homework. She knew Bo’s story inside and out when she came to interview us. After the inverview she contacted Senator Jerry Moran who made some life-changing phone calls for our son.
On Friday, we received word that Bo would be allowed to have the blood test he needs.
This is a facebook post John made after we received word that Bo’s blood test would happen and I couldn’t have said it better myself.
Once again, we are truly overwhelmed with the love and support that we have received. The amount of people that shared our news story on their Facebook page in order to help get our message out was overwhelming. The amount of positive comments posted really blew us away. We are not the only family that this shutdown has affected and it was why we felt that it was important to speak out. When used properly, social media can be a powerful tool to get your message out.
It was a strange turn of events that took place on my birthday when we were in the hospital again last week. We received some information from Boston that we had been waiting on since our trip. Bo had to have two procedures done and while the procedures were going on, we received this new information from Boston. The information was a relief, but frightening at the same time. We immediately discussed a plan of action for what to do next with Bo’s team of doctors. One major part of the plan was to draw blood and then send it to NIH first thing Monday morning. It never crossed my mind that there was a potential shutdown that could happen. When we were told that we can’t send Bo’s blood and we had to wait until things get resolved before we can move forward with the plan that we just came up with… We were dumbfounded. Right when we thought we had a breakthrough, we got punched in the face!
I don’t have all the answers to life and nor do I try to understand it all. You have to pick and choose your battles in life, but when it comes to your child’s health… you will fight them all! You have to question everything and if you are not happy with the answers… you have to continue to ask others until you are. I used to get really frustrated with the amount of doctor appointments and specialists that we would go see for Bo. Nobody had any answers that made since. All that the appointments did was make me question our parenting abilities. I was starting to think that we were making things up and then the only thing that came to mind was… Munchausen syndrome… I felt like we always had one specialist saying one thing and another saying something different… and this can make a person think that they are crazy.
Our trip to Cincinnati last year was almost a breaking point for us, but it was Carolyn that never missed a beat and she continued to fight. When we were told that we needed to go to Boston this year, I thought it was a bad idea after everything that took place last year in Cincinnati. Why would we have to go all the way to Boston with a sick kid just to be told the same thing that we had already been told so many times??? Well, last week we were given some information that justified our trip to Boston. For once, we feel that we have a direction that we need to head towards in order to get Bo healthy. We still have a long road ahead of us and more battles to fight… but, we now feel that we have better information and we know what we are fighting. We no longer feel like we are in a Kung Fu movie fighting with our eyes closed. It is Carolyn’s motherly passion that is our family’s strongest weapon.
It amuses me that I find comfort in a quote that came from a fictitious movie character that I read daily…
The world ain’t all sunshine and rainbows. It’s a very mean and nasty place, and I don’t care how tough you are, it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That’s how winning is done! Now, if you know what you’re worth, then go out and get what you’re worth. But you gotta be willing to take the hits, and not pointing fingers saying you ain’t where you wanna be because of him, or her, or anybody. Cowards do that.
This message is spot on … Nothing in life is given to you and you have to go out and fight for things you believe in. You have to also continue to move forward no matter what hits you in the face. As a kid, life is suppose to be all sunshine and rainbows and we are trying our best to give Bo a chance to have a normal childhood.
At the end of the day, we would trade in all of the attention and things that we have received for a healthy child. We thank you once again for supporting us in our fight for Bo!
Today we headed to Children’s Mercy to have blood drawn and sent to NIH and Fox4 was there to continue telling our story.
Thank you to KCTV5, KMBC9, Fox4 News, Meryl Lin McKean, Senator Jerry Moran and all of the doctors and nurses at KU Med and Children’s Mercy who work so hard to give our son what he needs. Our family is blessed by all that you’ve done.