St. Louis Recap

Havyn heads to St. Louis about every three months to see doctors at St. Louis Children’s Hospital. We started this about six months ago. Dr. Gutmann leads the NF Center here and they specialize in her genetic disorder, Neurofibromatosis Type 1. Overall we got great news this trip. Here’s the scoop:

We left Louisville on Wednesday afternoon. Havyn’s big sis Amelia joined her for the journey. (A special thanks to Mamaw for hanging with the boys – and to Teresa, Ethan, Maria & the Ingram Family, Linda, Nona, the Busses, and Mary Beth as well!) After a brief stop at Norton Children’s to visit a new friend with leukemia, we ventured west. We managed to make the four-hour trip in about six. We arrived at HavenHouse at about 10pm. Everyone was tired and cranky but it was nice to be at our home away from home.

The day started early today with a 7:40 appointment with Dr. Gutmann. At the end of it he said, “Havyn is looking fantastic. You have an amazing girl here.” He looked her over and talked to us about several things. No major news. The coolest thing was to learn about a new study they’re doing. Havyn gave a urine sample. They have been harvesting shed bladder cells and through the amazing science of genetic engineering, they can grow those cells, do some kind of sorcery, and turn them into stem cells. They can then grow those cells into whatever kind of tissue they want. So in theory they could grow brain tissue that is a match for Havyn’s. And then they could do testing on it. Their hope, long term, is to be able to see how different mutations of the NF gene affect patients. Discovering and isolating these things can mean great advances in predicting symptoms and caring for Havyn and the thousands others stricken with this disorder. And all this has me wondering if I will one day be able to pee in a cup, throw it in microwave, and have some tasty brains to help ward off the zombie apocalypse.

We did show him a small bump we’ve found on Havyn. He thinks it’s probably the beginnings of a small neurofibroma. These small tumors on the skin are the hallmark of NF-1. Almost all patients get some. Most get a few but some get hundreds or thousands. It was disappointing to know she has her first one, but it was bound to come along sometime. Outside of that we talked mostly about issues she may face educationally when she starts school down the road and how we can advocate for her. We also discussed how poorly she sleeps. He confirmed that sleep issues affect a lot of people with NF. He’s ordered a sleep study for her so hopefully we can determine what her issues are and get some help for her. (And us!) But at the end of it all, Dr. Gutmann was so pleased with how she’s doing that he doesn’t think he needs to see her for another year.

Afterward we went to the Neuro-oncology Clinic. Havyn saw a social worker, endocrinologist, neurosurgeon, and oncologist. The most relevant portion was with the oncologist. We talked quite a bit about the chemo she is on and what to be watching for. About a month ago the team in Louisville lowered her dose to compensate for her counts dropping. The team here confirmed that call. We also talked about her upcoming MRI and what they’d suggest we do if the results aren’t good. (We have no reason to think they won’t be, but just want to be prepared.) Ultimately everyone there agreed that Havyn is looking very good.

Our final visit, after a delicious lunch with our friend Danielle… well hold on a second. Let’s stop and say how grateful we are for Danielle. She was insistent on helping us today and was at the hospital before we were, waiting for our arrival. She was amazing! So much of Havyn’s appointments are just a dialogue with the doctors. Danielle took the girls out to the waiting areas and kept them entertained while Tammy and I were able to have some time listening and asking all the questions we wanted. I’m confident that without Danielle’s help there are things we would have missed and questions we would have forgotten to ask. THANKS DANIELLE!

Okay, as I was saying, our final visit was with her ophthalmologist, Dr. Hoekel. Mostly good news here. For the last few months we’ve done very little patching. Her vision was so much better in Decemeber that he thought we could eliminate patching and check her again in three months. Well he checked her and she’s GREAT! Her vision in her “bad” eye is now 20/20, actually better than her other eye which was 20/25. He said most three year olds see about 20/30 or so. Havyn has above-average vision and she has a massive tumor on her optic nerve! How cool is that?! Praise God!

The not-so-good news is that her strabismus (wandering of her eye) has not improved. We think it’s actually getting worse. He doesn’t think that can be corrected by patching and thinks she’ll need corrective surgery in the future. This misalignment of her eyes can cause sensitivity to light (which explains a lot) as well as headaches and more. What’s worse is that eventually the brain can tire of trying so hard to keep her eyes aligned that it could start to shut down one eye, leading to vision loss. The surgery is quick (30 minutes) and quite effective, so we’re told.

The weird and interesting news is about her pupil size. I mentioned that I’d noticed that one often seemed larger than the other. He measured them and said that he was not surprised to see them different sizes. Did you know that your pupillary pathway runs through your spine? As he explained it your pupil from one eye basically runs all the way through your brain, down into your spine, and back up through the spine, brain, and back into your other eye. With her tumor, scoliosis, and casting, he wasn’t surprised a bit to see her pupils affected. But he’s not at all worried because her vision is so good.

He’d like to see her again in a few months just to make sure her vision isn’t slipping. From what we understand the vision testing can be indicate that her tumor is changing/worsening even before it may be caught on an MRI.

So that’s all for now. We’ll head back to Louisville tomorrow morning. The next two weeks are no-chemo weeks for Havyn which will be a nice respite. The next significant step for her is in early-mid April when she get’s her cast removed. We’re planning a week-long party involving plenty of swimming and baths. At the end of that week she’ll get her next cast.

Thanks for your continued prayers. Our girl is doing great. We are amazed and humbled by the love so many of you have shared. We praise God for the good news and the way He continues to teach us along this journey.

7 Replies to “St. Louis Recap”

  1. I continue to be amazed at you two parents who are walking through this with peace that passeth understanding, with grace greater than what you are facing, with the where-with-all to find ways to intentionally parent each of your children, and, through it all, look forward and expectantly for the next opportunity to share God’s love with other parents and children. I stand amazed at our great God who wonderfully made not just Havyn, but also Steve and Tammy.

  2. Praying for your precious Haven Joy. Such a trooper, but know you both are calming influence and God is working for her good everyday.
    Thank you for sharing. You do a beautiful job of writing what I know at times is so very hard. Praying for strength for both of you. God bless all of your family.

  3. Thanks, Jesus, for this great report on sweet little Havyn! Thank you, Steve & Tammy, for keeping us all up to date on your journey! I know most times you must be exhausted, yet you take the time to keep us in the loop. You are an amazing family and we will continue to lift all of you up! The Peays love you so much! ♥♥♥

  4. Love you guys, and praying for you daily. Her Aunt Jamie is looking at the same alignment surgery! Hoping God uses my experience to be able to answer any questions that might come up along the road for you. And thanks for always updating. Love you!

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