At Children’s Hospital of Wisconsin, each building is connected by a skywalk. You can get anywhere in the complex without stepping foot outside.
Speaking from experience, I recommend that every parent with healthy kids spend some time on one of those skyways.
Let me be clear: I wouldn’t wish what we’ve dealt with with Sydney over the past several weeks on any parent. I am in no way glad that it happened, in no way saying it was a good thing. I would much prefer that she and her sister Madison stay healthy 100 percent of the time – not get so much as a sniffle, sleep soundly for 12 hours each night, never trip and fall and bump their heads or skin their knees.
All that said, as Paula and I walked out of Children’s on Wednesday afternoon, holding Sydney – still low on white blood cells but, as usual, high on energy – I couldn’t help but appreciate the experience.
But I’ll get to that.
First, Sydney. Syd’s had a tough go over the past month or so -- her fourth ear infection, followed by a viral infection, followed by minor surgery to put tubes in her ears, followed by a bout with early stage pneumonia. After I got back from the NFL Scouting Combine in Indianapolis, Paula took her in and the doctors did a blood test that revealed she had a very low count of white blood cells called neutrophils.
Low, as in zero.
Apparently, good is somewhere between 1,000 and 2,500. I don’t know. I just know that zero sounds bad. Really bad. And while her pediatrician was reassuring that he didn’t think it was as serious as it sounded to me, he was also obligated to tell us the worst-case scenario: Leukemia.
I’ve been fortunate to be associated with Midwest Athletes Against Childhood Cancer for a while now. I’ve gotten to know a few of the remarkable kids who have overcome the dreaded disease, and gotten to know parents who lost their children to it. I have always been amazed by their spirits, their toughness, their refusal to feel sorry for themselves. And I’ve always said that I don’t think I have that in me. I hope this episode is as close as I ever come to having to find out just how tough I am.
The days between Sydney’s blood tests were excruciating for me. I prayed a lot more than I had in recent months – amazing how quickly we find God’s phone number when we need to talk to Him after radio silence for awhile – and tried to think positively. I did not succeed.
Sydney’s neutrophil number went up slightly after her next test, but not significantly. Her pediatrician in Green Bay seemed satisfied that she was trending in a positive direction and just said to have her blood checked again in a week. But after we told our friend John Cary, the executive director of the MACC Fund, the next thing we knew, we were at Children’s. And then, just as quickly, Sydney was undergoing a bone marrow aspirate, a procedure during which a needle is inserted into her hip area to remove a small amount of bone marrow. It was done so her doctor, Dr. James Casper, could determine if Syd's body was making neutrophils, and they just weren’t making it into the bloodstream, or if she just wasn't making them, which would not have been positive news.
I sincerely hope you never have to visit Children’s Hospital, but if you do, I promise your little one will be in good hands. Everyone we encountered – from the nurse who drew Sydney’s blood to the receptionist who told us where to go to the anesthesiologist who walked us through the process to the recovery nurse who was at Sydney’s bedside when she woke up – was phenomenal. And I have no doubt they are just as wonderful with kids and parents facing even more daunting health challenges.
Which brings me back to the skywalk. Sydney, much like her big sister, is constant motion. Both of them walked before they were nine months old, and with a little more than a week to go before her first birthday, Sydney thinks she has it mastered. She walks backwards, she tries to run – she’s still a little wobbly when trying to sprint – and she loves every minute of it.
So to pass the time while waiting for results of some blood work on Tuesday and again while waiting for the news from the bone marrow aspirate on Wednesday, I took Sydney to the skywalk area and let her toddle back and forth. It was good for her. It was better for her dad.
As Sydney meandered about the walkway, she invariably found her way into the path of oncoming foot traffic, forcing me to make eye contact with every parent or patient who was approaching her before shepherding her out of the way. And the more people we passed, the more I came to appreciate the challenges other parents and their children were living with – and how long some of them had clearly been fighting those fights.
Truth be told, before this week, the only time I’d set foot in Children’s Hospital was a few years ago for Dave & Carole’s Miracle Marathon, WKLH's annual radio-thon to benefit Children's. And that day, Paula, Madison and I only made it as far as the lobby, where WKLH was broadcasting from. I signed up for a monthly gift charged directly to my credit card (as you can do right now, if you’re so inclined) but never devoted a second thought to where that money was really going.
I made it much farther than the lobby this time. I’m not glad I did, but I’m better for it.
I don’t think I’ve ever been ungrateful for the blessings I have in my life – especially Paula, Maddie and Syd. I don’t think I’ve taken the girls for granted during the past two years, since Maddie’s arrival 36 hours after the Packers’ 2009 season ended with their overtime playoff loss in Arizona. I knew how blessed we were to have two happy, healthy – albeit crazy – little people turning our lives and our house upside-down on a daily basis. But a reminder never hurts.
As for Sydney, the bone marrow aspirate yielded relatively good news. The marrow contained plenty of precursor neutrophil cells, so her body is definitely making them. Now, her body just has to overcome the antibody that's likely killing them off and allow those neutrophil-to-be cells to thrive and get her count back up to normal. She may need a G-CSF (Granulocyte - Colony Stimulating Factor) shot -- or a series of such shots -- to help her body do that. But her body may overcome it on its own and she won’t need the shot. In any event, her neutrophil count will have to be monitored for the foreseeable future, because until they watch her numbers for a while, they won’t know for sure whether her neutropenia is a chronic issue (cycling) or something short-term that cropped up because she’d had too many illnesses in a row.
In the meantime, she will stay on an antibiotic until her count is up, since her immune system is still depressed and she is still very susceptible to viruses, bacteria and infections. My germophobe wife is in disinfecting overdrive, which isn’t the worst thing. After rolling my eyes at the way she dispenses hand sanitizer with a fire hose, I am now wholeheartedly on board with her overly cautious approach. I’ve never washed my hands so frequently in my life.
But the best thing that has come out of this – besides my cleaner hands – is perspective. I still don’t think I have it in me to handle something more serious than what Sydney’s faced. I pray I don’t have to find out. But I’ve seen the parents who do. I’ve seen the people who help them, from the MACC Fund and Children’s Hospital, in action. And I know, beyond a shadow of a doubt, that our kids are lucky to have those people on our side.
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