Happy Birthday to Havyn’s pretty awesome momma! She sure was a cute kid… and she’s just gotten more beautiful with age, hasn’t she? And boy oh boy, she doesn’t look one bit like Amelia. If you have a chance to wish her a happy birthday, I know that would mean a lot!
It’s been a while since we’ve posted. Since then, Tammy and I enjoyed a wonderful 10-year anniversary vacation and our sweet Havyn turned 4! Medically, there aren’t any major developments, but feel free to read on.
We’ve heard back from our Louisville and St. Louis physicians regarding her most recent MRI. Everyone seems to agree with the initial reading from Cincinnati that the optic nerve tumor and her spinal tumor are stable. They also agree that there’s a lot going on inside her brain. I’ll post some of the verbiage from the radiologists at the end of this post. Some NF-1 patients have a lot of “hot spots” in the brain and Havyn falls into that category. What is new to us this time is that one radiologist described some of the spots as gliomas, a type of brain tumor. I guess that’s what they’ve been all along, but they’d only described them as “spots” before. I think that’s because they are typically benign and non-agressive, but still…
She is doing well in her new cast. I don’t know how she does it! She complains about it every once in a while but for the most part it’s not a big deal to her. A few minutes ago we were talking with a teenage patient here at the infusion center. I asked the girl what she was battling – ALL leukemia. Havyn said, “Do you have a port? Guess what? I have a port right here! And look at this…” She lifted up her shirt. “I have a cast, too. Do you know why? Because I have a crooked back.” She smiled, proud to share.
This cast is much tighter around her belly than the first one was. We think it may be a bit too tight, especially considering that she still has a couple more months in it. It presses on her considerably. She’s still eating fine and having regular bowel movements, but she’s peeing all the time and we wonder if her bladder is being smushed. Tammy called the nurse in Cincy (we love Karen) and she told us we can make a small cut on the bottom to loosen it. We’re considering it.
As far as the chemo goes, Havyn is doing well. Her counts haven’t dipped too much. Several things are borderline low (red blood cells, hemoglobin, platelets, etc.) but nothing is critical.
We got confirmation this week that Havyn has been accepted by Make-a-Wish! Sometime in the next few months we’ll be meeting with a couple of their volunteers so Havyn can make her wish. I asked Havyn what she wanted to wish for and she said that she wants to go to Chuck-E-Cheese. We’re going to try to help her dream bigger. 🙂 We’ve been around several pediatric charities and Make-a-Wish is the real deal. And if you’re like me, you may have thought the wish granting was only for kids with terminal diagnoses. That’s not quite the case. They grant wishes for kids facing life-threatening conditions. We’re grateful and excited!
One final thought for now. I mentioned Havyn is doing well with her cast. That’s true as far as her temperament goes, but that silly thing really messes with her coordination. She has trouble with stairs, getting on the potty, etc. And it really messes with her balance. It makes her top heavy and makes it impossible for her to bend to catch herself if she starts to tip. She falls frequently, leading to lots of bruises and scrapes. Just last night we walked up to the (newly refurbished) McD’s in Middletown. The kids’ playland there was a ton of fun. As Havyn was making her way down the stairs for us to leave, she bit it big time. She hit the side wall, got her feet stuck, and scratched the side of her head in the process. She screamed and cried, embarrassingly stuck halfway up the steps. I darted quickly up to her, scooping her up. I looked her over to make sure she wasn’t seriously injured and I carried her in my arms down the stairs.
I can’t help but compare her situation to yours and mine. All of us have stress, worry, fear, and troubles wrapped tightly around us. Often the trials pull on us and we get tripped up. We get bruised and scraped, ending up in a mess on the floor. I don’t know about you, but I’m grateful for a Father who is willing to scoop us up and provide peace and protection. You have been a refuge for the poor, a refuge for the needy in their distress, a shelter from the storm and a shade from the heat. – Psalm 25:4
Tammy and I find ourselves daily leaning on His strength, grateful that He is the one carrying us through this season.
Love you guys… thanks for following along. Below is some of the radiology stuff…
- Extensive signal abnormalities characteristic of NFl. These are associated with enlargement in the pons and medulla, but the appearance is not significantly changed from prior studies.
- Slight increase in size of nonenhancing lesion in the right hypothalamus.
- Stable enlargement of the right optic nerve and sheath consistent with optic nerve glioma as indicated in history; pattern of enhancement has substantially changed since September, now concentrated on the superior medial aspect of the distal nerve.
- Stable enlargement/elongation of the left intraorbital optic nerve with mild enhancement.
- Abnormal signal and enlargement of the spinal cord from the cervical medullary junction to the level of C6.
- Abnormal signal of the thoracic cord from the level of T4 to the level of T11, with associated abnormal enlargement from T5 through T7.
- Rightward convex thoracic scoliosis.
- Suspect neurofibromas in the trunks of the left brachial plexus. This could be best further evaluated with dedicated MR imaging of the brachial plexus.
- Unchanged enhancing, T2 hyperintense lesion expanding the right optic nerve consistent with glioma.
- Small right hypothalamic lesion is unchanged, probable glioma.
- Unchanged large infiltrative T2 hyperintense mass centered in the pons with extension into the upper cervical cord to C6 level with expansion of
the brainstem and spinal cord, consistent with glioma. The lesion also extends into the midbrain and cerebellum.
- Unchanged intramedullary T2 hyperintense lesions in the upper cervical and mid thoracic spinal cord, also consistent with gliomas. Upper
cervical cord lesion is continuous with pontine mass as described above.
- Unchanged well-defined left basal ganglia T2 hyperintense lesion consistent with glioma.
- Unchanged nodules in the region of the left brachial plexus, likely neurofibromas.
- Additional unchanged T2 hyperintensities involving bilateral globus pallidus, hippocampi, and left thalamus without corresponding enhancement.