Rowan's Story: "God must have big, Big, BIG plans for me."

Tuesday, September 16, 2014

"God must have big, Big, BIG plans for me."

After Rowan's hematology clinic appointment today, the local doctor called and left me a message letting me know that some of last weeks special test results had come back. These labs were ordered by the specialists in Seattle, because of a "clue" they found on some of Rowan's earlier tests. The were highly sensitive, very specific tests. Unfortunately, the results were not normal, and indicated a definite problem. However, the local doctor said he would have to forward the results to Seattle to see what the assessment and recommendations would be. I immediately emailed Seattle, and basically asked "OK, what does this mean? And what do we need to do?" I got a response back very quickly, but it wasn't what I was looking for. The doctor explained that this was "new uncharted territory", that this was not typical, and that I would need to bear with her as they tried to figure Rowan's now further complicated, unique health issues.

My flawed, adult, human reaction was frustration, worry, impatience and concern. Rowan could sense that, and asked me what the tests said. I tried to explain the very little that I did know and communicated what the doctor had said about us being patient while she tried to figure it out. And he said, "So, I'm so different, so unique, that the best doctor in Seattle...no probably in the country, doesn't know what to do about me yet? Doesn't understand what's wrong with me?" He started shaking his head from side to side. But then I noticed that he was smiling...like REALLY smiling... eyes wide open, jaw dropped, in awe, smiling. Confused by his facial expression, I said, "What are you thinking Rowan?" His response humbled me instantly. He said, "Wow. I'm just speechless. God must have big, Big, BIG plans for me!"

I know I say it all the time, but this kid teaches me how to be a better person every single day!

I hope you all treat your trials like a badge of honor like Rowan does. I hope you all realize the big, Big, BIG plans God has for you too.

1 comment:

AnonymousSeptember 27, 2014 at 7:39 PM
We can't think of a better cause to be a part of other than Rowan's. He is an inspiration to me & my family.We love this precious young man and would do anything to help him with his battle. Our prayers are with you and your family and may God Bless & heal you. Gwen & Tom Pilgreen
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In Memory of Rowan's 11th Birthday

http://a.co/4bNkv62

*Click the link above to purchase a gift in memory of Rowan's 11th birthday.*

In memory of Rowan's 11th birthday, July 21, we are hosting a virtual birthday party to benefit Methodist Children's Hospital (MCH) in San Antonio, where Rowan spent much of his childhood battling for his life. All gifts purchased through this registry will be delivered in person to MCH on Rowan's birthday, July 21, 2017. The toys will be donated to the Child Life Department at MCH and placed in the new play rooms at MCH for many pediatric patients to enjoy during their hospitalizations. The toys on this registry represent a few of Rowan's favorite things. We all know Rowan had such a huge heart for giving and making the good, so this party in his memory is a way of carrying out his legacy by celebrating and doing the things that mattered most to him. Thank you for being a part of carrying out Rowan's legacy, making the good, and honoring Rowan's powerful life while remembering his 11th birthday on July 21, 2017.

In ICU, post vp shunt surgery...precious angel.

In October of 2010, Rowan started having severe headaches again. He had two spinal taps, just three days apart due to increased cranial pressures (double or triple what they should be). They removed over 55 ccs of excess spinal fluid trying to relieve his headaches. Eventually, when the pain was just too severe and his pressures weren't coming down, he finally had to have a vp shunt placed. When he woke up the next day, he told one of the doctors that he would give him a free autograph for helping get rid of his headaches. A couple days later, he made a sign for me to put in the window of his hospital room, that he says said "Open for business. Autographs $15. Free drink with purchase".

Another battle wound...this one from his Chiari malformation brain surgery.

In January of 2009, Rowan had craniectomy/laminectomy surgery to correct a brain malformation that was obstructing his flow of spinal fluid and causing headaches and other neurological symptoms. They removed a small piece of the base of his skull, shrunk up the bottom portion of his brain, and removed part of his C1 and C2 vertebrae to free up space for the spinal fluid to flow. When we told Rowan that he would be going in to the hospital to get his brain fixed, he thought for a minute and then said, "Will I see Logan (favorite nurse) and can I eat baby ice cubes when I wake up?" When we said yes, he simply said "Ok, Let's do it!"

"Our Little Trooper"

Tuesday, September 16, 2014

"God must have big, Big, BIG plans for me."

1 comment: