Sunday, January 15, 2017

We Wanna Be Like Jack!

I want to tell you about our friend, Jack.

Two years ago, Jack and Tillery were among the healthiest children at the Ronald McDonald House. Our families bonded over this strange statement. With our friends and family, our children were in the most dire condition but in a house full of children who had travelled hundreds or thousands of miles due to their serious medical conditions, we were the healthy ones. Some days, the guilt of that statement was too heavy. To watch our friends lose children while ours were busy playing together or making crafts made us feel like we didn't belong in this house. Other days, the fear and reality of our children's illnesses felt fresh and we knew that these were the only people who could ever truly understand us.

When I met Jack, he had chipmunk cheeks and a smooth bald head. His laugh was more of a high pitched squeal and whenever he saw me, he would shout, "Miss A-Wee-Na!!". Jack wore a mask often or sat in his covered stroller because his body could not handle being exposed to any "germies". Jack was one of the first people to call Tillery by the nickname Til and it sounded more like "teal". Jack was a special friend for us to have because he is the exact same age as Luke and they had similar interests so during the long gaps of missing seeing Luke, it helped to have Jack to hang out with us.

Today, Jack has a slender face and a head full of curly, red hair. He's gotten older and he's not the little squealy guy we knew then. Now, he takes karate and is completely fearless. He goes to school instead of the hospital and he blends in with his peers. After spending most of his baby and toddler years in and out of hospitals, on a large number of medications, requiring multiple therapies and treatments, and overall looking and being different, now Jack is just a normal kid.

This normalcy can be traced back to a medical decision his parents made. A little over 2 years ago, doctors sat down with his parents and explained a procedure that could make Jack healthier and improve and extend his life. Those things sound awesome to a parent of a sick child and you would think the decision to go through with the procedure would be an easy one to make...until you hear the other side. About half of the kids that go through the procedure do not survive it. Jack had to undergo some heavy chemotherapy and then have a bone marrow transplant. He was in the hospital for about a month but had to stay within a short radius of the hospital for 100 days following the transplant. His mom had to quit her job to be with him and they both had to miss his dad who had to stay home to keep income and insurance coming in. The medicine, the procedure, and the toll on the family of being separated were hard but today, their family is together and Jack is a healthier child because of it.

Jack is the success story many of us in the Ronald McDonald House family cling to because so many of our friends fell into the other half. Many of the families we know who had children who had a bone marrow transplant left Cincinnati without their children. Those families had the same decision in front of them and they made the same decision that Jack's parents made but their outcome was not the same.

The reason I'm telling you about Jack is because right now, we also have a medical decision to make. Over the past week, I've spent a lot of time thinking of the families we know who made a decision and then lost their children or had children who suffered medically. Their parents didn't make the wrong decision because medically, there was no right or wrong. If there was, the doctors would have advised differently. This happens a lot for parents of sick children. Doctors give information and ultimately the choice is the parent's choice to make. You never know what you would decide until you are in that position. You can't imagine looking at the possibilities and risks and side effects of both sides of scary medical procedures and making a decision, choosing the lesser of evils sometimes in order to give your child a fighting chance.

Last night, my mind was on Jack. The kid is amazing. I look at him and how far he has come and I want every bit of it for Tillery. In a lot of ways Tillery is already right where he is. The only difference is, we still have this next decision to make.

Major brain surgery: Now or Later?

We have been given the pros and cons of either decision. Our medical team says there is no right or wrong answer.

So we look at our child who is "healthy" and thriving. She's dancing and learning to hop with both feet off the ground. She is learning to write the letter "t" and working on saying her alphabet and counting. Her hair is growing out and she's blending in pretty well with her peers. Do we take this child to the operating room for the 14th time, this time for another major brain surgery? We know that the last surgery of this scope resulted in a blood clot in her brain that threatened her life. We know that, while our surgeon will be very cautious, any surgery, especially in the brain, has a long list of risks that are potentially life altering. Do we risk all of those things now?

Or do we wait? We will have quarterly scans to measure the tumor. If we see growth, we know we can go in at that time for surgery. What we don't know is, will it be too late?

We are so thankful for how wonderfully Tillery is doing. We are grateful for your prayers and support. We ask for continued prayers, not just for this decision but for future decisions we will face as we live life as a family with a brain tumor diagnosis. We ask for prayers for so many others who face decisions like this with their children. We ask for prayers for those who mourn the loss of a child and put blame on themselves. We ask for prayers for the children who survived, that they will continue to live life to the fullest.  Finally, we ask for prayers for all those who have not yet faced a childhood illness but one day will.

March 2015

January 2016

May 2016

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