So tomorrow is the big day. Havyn is sleeping soundly right now. The short version is that we left Louisville this afternoon and are spending the night at a hotel in Florence (Y’all) so that she can enjoy another dip in a pool and so that we won’t have to subject her to a long car ride without food tomorrow.
That’s the brief headline. But a few hours ago it looked like we wouldn’t be heading to Cincy at all…
Our entire family has been battling the sniffles over the past few days. Runny noses, sneezing, headaches… you know… January in Kentucky. Havyn hasn’t had a fever, but based on the 14 imperial gallons of snot that she’s produced we knew she was fighting something. The oncologist agreed to let Havyn skip chemo this week so that we wouldn’t be beating up her body even worse before being sedated for the casting procedure.
So today, instead of getting chemo, we went to our pediatrician for a checkup and a quick blood test. The doc confirmed that Havyn has some sinus congestion but gave the consent to have her sedated. Nothing too major. No fluid in the lungs, etc.
And all of her blood counts looked good… except for one. Her platelets were 78. A normal reading should be 140-440. Before we loaded the car to head north, we wanted to confirm with the medical team that they wouldn’t kick us back to Louisville once we got there.
Sure enough, after quite a bit of going back and forth the verdict was “No. Dr. Sturm doesn’t feel comfortable proceeding. There’s some concern for bruising with her platelet count so low.” ERGHGAHGHHAH! How frustrating! We skipped chemo so that we could make this work. And if we don’t do it now, when would we do it?! We don’t want to wait until after she starts back to chemo which means the next window to get this cast put on would be in about 6-7 weeks. Not only does that seem like way too far away, but it really messes with the meticulous schedule of casting and MRIs that Tammy has worked so hard to get aligned.
I asked Dr. Sturm’s assistant (Karen – who is amazing, by the way) to see what other options we might have. She looked and there were no more openings this week. I assured her that we wanted to do nothing to risk any complications with her casting, but we weren’t sure that the alternative of waiting so long was very good either. She told me she’d talk to Dr. Sturm and get back to me.
An hour or so later she did. Dr. Sturm was willing to open up a spot this Friday afternoon. “We’ll take it! But, do you think it would be worth getting one more blood test just to confirm that these results are accurate?” We called down to our oncologist and they told us to come on down and have her re-tested. We rushed out the door and made it downtown just in time.
They ran her blood through their more-accurate machine. They also did a “manual” read by examining her blood on a microscope. It turns out that her platelet count is actually 160! So a quick call back to Karen and we’re back on the schedule for tomorrow.
And so here we are. Laying in bed on the eve of a pretty life-altering day for Havyn and our family.
A few thoughts in summary of our day:
- When life gives you lemons, make sure that they’re actually lemons and not oranges in disguise. It’s pretty easy to get frustrated by the bad or disappointing news you get. But often the news is merely a challenge for you to push harder. Or sometimes the news isn’t at all what it seems to be.
- If you’re a parent, the ultimate responsibility for your children is yours. We have been so fortunate to have some of the most amazing doctors providing care for our sweet girl. But at the end of the day she’s our girl, not theirs. Our job is to listen. Our job is to learn. Our job is to pray. And our job is to decide. Nobody knows your children the way you do. Nobody cares for them the way you do. Don’t be afraid to demand the very best for them. (I could insert a funny, semi-scandalous story about my mom confronting my elementary school principal… but it’s not exactly mine to share. Thanks for the math books, Mr. Principal.)
- You never know what impact you might be making. One of the nurses at the pediatrician’s office is just in love with Havyn. (Who isn’t? Let’s be honest…) She told me today that she’d considered getting out of pediatrics but that because of Havyn she’s decided that pediatrics is right where she needs to be. We don’t want our girl to go through all of this, but we know that “God works all things together for good.”
- God is in the details. 364 days ago I had a work trip that took me to Florida. I did my booking online and earned $44 of “Orbitz Bucks.” I’d long since forgotten about those credits. Yesterday I got an email saying something like “Hurry – your credits expire in 2 days!” Perfect timing. Tonight Havyn got to splash and giggle in the pool, thanks in part to those $44 from 364 days back.
- My sister is pretty ridiculous – in more ways than one. She’s going to take part in “Cupid’s Undie Run” in a few weeks. (Her fundraising page.) This charity run is in 45 cities this year. Participants do just what it sounds like. They run through the streets in their undies. Last year they raised $3.5 million and it all goes to the Children’s Tumor Foundation – an organization committed to researching and ending NF. Thanks sis. You are ridiculous indeed – and I like it!
- Tammy’s sister is also ridiculous but for different reasons. Thanks for taking over our crazy household while we’re out of town. We are so grateful to have you in our family’s life. Your generosity and willingness to sacrifice for our family is so appreciated.
- If you are still reading this long post, then you are also ridiculous. Thanks for loving our girl and following along with her journey.
Thanks for your prayers tomorrow. We’re praying she sleeps well tonight and wakes up healthy and in good spirits. We’ll update when she’s got her new “bones” and will be sure to include some photos of our little superstar.