I have often said ( Tammy speaking here) that I know there is a train coming. I just don’t know when it is going to hit and how bad the trauma will be. We have had a little more than a year break from treatment mode. Yes, Havyn has still had to brace and do MRIs but thankfully nothing like casting and chemo. It’s been nice to have a bit of a break from all the craziness of treatments. The train is coming. I can hear the roar from the locomotive rushing down the winding tracks. Anxiety, anger and frustration are a few of the emotions that we have felt from the news we received last week.
On Tuesday, July 9th we loaded the family up and headed for Cincinnati Children’s Hospital. When we arrived we had a pleasant surprise to see some friends – the Baynes from Louisville. Their son, Glen, is about Havyn’s age and also has NF1. We connected with this sweet family several years ago and have been on the NF journey at the same time. Caity and I laughed and said that we should have carpooled.
Havyn was x-rayed in and out of her brace. We waited and waited (waiting in a small room with 6 people for any amount of time isn’t for the faint of heart). At one point a nurse put Havyn’s images on the monitor. Our hearts sunk a bit because we could tell that the curve had gotten worse.
Dr. Sturm came in with his entourage of medical folks. He small-talked a bit and then said, “Havyn’s curve has gotten worse.” Much worse. Her scoliosis curve went from 58 degrees to mid 70’s in just a few months time. He went on to say, “Unfortunately we can’t control this curve anymore with bracing. It’s time for surgery.”
Havyn will have surgery late this fall to insert growing rods. This system of four rods will be placed on either side of her spine. She will have an additional surgery every six months to adjust the rods. That will be part of her story for the next 6-7 years at which point she’ll have the growing rods removed and get permanent rods inserted. It’s pretty fascinating (Steve talking) and we’ll probably post more details about the procedure sometime soon.
We’re disappointed and frustrated. Part of the frustration is that the brace she’s been wearing for the past 4-5 months has basically done nothing. And we knew it, too. We had it adjusted at one point and just kind of let it go, but in hindsight I wish I would have pushed for them to remake the brace. Who knows if that would have helped hold her curve, postponing surgery until later on.
At one point, I (Tammy) asked Dr. Sturm if the surgery would de-rotate her spine. (It’s not only curved, but twisted.) He said it should help with that. “But let’s be clear. For someone with a curve like hers, appearance is totally secondary. Her curve is a significant medical problem.” He went on to explain that her curve can impact lung function, among other things. This was a bit of a gut check.
He asked who Havyn’s pulmonologist is. “She doesn’t have one.” He seemed shocked by that. So last week we had our first appointment with yet another doctor. The visit with Dr. McPhail brought some good news. He said that her breathing test was actually pretty good and has no major concerns at this time. A normal reading is 100 and she scored about 75. He said that’s totally acceptable. He ordered an overnight SAT study (sleep test to check oxygen saturation levels). He also has ordered a bronchoscopy on the day of surgery to assess airway anatomy. They have to make sure that everything looks good before a major surgery. Oftentimes the spine pressing on the lungs can lead to some bits of pneumonia.
All of this is a lot to process. Even though we knew surgery was inevitable, we were hopeful and praying that she’d be the exception and find healing without surgical intervention. At the least, we hoped she’d be a bit older. The whole day felt eerily similar to the day we found out that Havyn had to start chemo. There’s so much to think about. While waiting on Steve to get the xrays on disc, the kids and I went to get the van. Before we pulled out of the parking garage I lost it. I couldn’t hold it in anymore. Henry tried to console me with, “Mom, it’s gonna be ok, the doctors will make it all alright. Bad news from the doctors is good news because they will make Havyn all better.” Then Amelia said, “ Mom, don’t cry, Don’t think about it. Just think about rainbows and unicorns and clouds that you can float away on. Don’t think about Havyn.” Still I cried and chuckled at their amazing attempts to make me feel better. I am angry, yet I know that God is in control and that he works ALL THINGS out for our good and HIS glory! I am sad, yet I know that my God is close to the brokenhearted. As I drove to lunch I argued with God. Why aren’t you healing Havyn? Why aren’t you listening? Why do I have to explain to my sweet little girl that the prayers we pray every night aren’t being answered in the way we are asking? And when she looks at me with disappointment like it’s her fault that she has to have surgery….UGH… SO heartbreaking. The train is coming BUT I still believe that God can heal her back without surgery and I will continue to pray for that. Would you join us in prayer?
On a more fun note. We have had a great summer! We got connected with a program called “A Kid Again” in Cincinnati. Their slogan is “ Giving illness a big timeout.” They hosted a day at Kings Island so the day after the bad news we got to ride rollercoaster and forget all about it.
Then last week we spent a great few days at Country Lake Christian Retreat where I (Steve) got to help lead a camp for 350 amazing kids. The whole family got to take part and we had a great time.
Thank you all for your prayers and friendship. We are beyond grateful!