Like the Magi, we are traveling west! By the power of a wifi hotspot, we’re posting this while hurtling at 70mph (or maybe a bit faster, right Tammy?) somewhere in the middle of nowhere Illinois and we’ll be in St. Louis within an hour or so. For those of you new to Havyn’s Journey, St. Louis Children’s Hospital is a leader for caring for patients with NF-1. For the foreseeable future we’ll make this trip four times each year.
Over the next couple days Havyn will see:
- Ophthalmology – When we were there a few months ago, Dr. Hoekel examined Havyn and found that she has suffered some vision loss on her left eye – caused by the tumor wrapped around her optic nerve. Her vision was 20/40 and we’ve been doing patch therapy like crazy. He felt that the nerve was still healthy and that we may be able to make improvement in her vision through patching. Looking forward to seeing if there’s any improvement.
- Endocrinology – This will be Havyn’s first visit with an endocrinologist. Some recent blood work showed some elevated growth hormone levels. Nobody seems too concerned but we’ll learn more about what we’re dealing tomorrow.
- Orthopedic surgery – Havyn’s scoliosis is pretty bad. She’ll get another x-ray and the doctor will talk to us about how well the brace is working. To be honest, I’m pretty worried about this. Her back seems to be getting worse but we’ll know more about that soon.
That’s all that’s planned for this visit. When we come back in March we’ll see neurology and oncology.
She was also scheduled for an MRI but due to some insurance considerations we’re waiting and will have that done in Louisville early January. That MRI will take a look at the brain tumor (optic glioma) but not the spinal tumor – at least I don’t think so. I think we get that MRI again in March.
In related news, this is week 2 of Havyn’s 2-week chemo break. This break was much welcome. The chemo is affecting her more the deeper we get in. Once again this month her counts dropped pretty low so the break came at the right time. It’s almost like those doctors know what they’re doing! She’ll start back for another four-week run next week assuming her counts have rebounded.
Thanks for your continued prayers. We’ll try to post updates this week as we get news.