Havyn has had a very nice two-week break from her chemo treatments. It is really remarkable how much the chemo will beat her up. We are grateful that she doesn’t deal with nausea and hasn’t had significant hair loss, but she gets pretty grumpy after 4 weeks of chemo and she gets pretty “gaunt” looking. She has about 5-6 months left of chemo. We’re hoping it continue to hold those tumors back and that chemo will be a distant memory not long from now.
The big news is that we’re moving forward with casting. We haven’t posted much here about the drama and decision-making we’ve walked through. When we went to Cincinnati a couple weeks ago we were presented with a bit of a dilemma. Dr. Sturm agrees with Dr. Luhmann that Havyn needs to be put in a cast. You can see an example in the photo. The exact type of cast, however, they disagree on. I’ll spare you the details, but we’ve ultimately decided to proceed with her treatment in Cincinnati with Dr. Sturm. Havyn will get her first cast next Wednesday and will wear it for 3 months. Then we’ll return to have it removed. One week cast-free and then back to Cincy for another one. I’m not sure how long they’ll keep repeating the casting, but at some point they hope to be able to return her to a brace.
For those of you curious, this is quite a procedure. First she’ll be sedated. She’s used to this from the many MRIs she’s had and she does quite well with going to sleep and waking up. My understanding is that while she’s asleep they’ll place her on/in a Mehta table. They’ll pull her, push her, twist her (that sounds a bit like the BopIt! game, doesn’t it?) and then wrap her in plaster and fiberglass.
They’ll cut out the belly area to allow for her to eat. They also make a small cutout in the back which apparently relieves pressure to allow the spine to correct in the appropriate direction. They will also leave the “strap” off of her right shoulder so that her port can still be accessed for chemo. It’s pretty brief – maybe 45 minutes.
Please pray for:
- Her health leading up to the procedure. She’ll have chemo on Tuesday and then all of this Wednesday. We hope her counts are great and she has no sniffles.
- The medical team. This type of casting is quite an artform. We’d like them to be on their game!
- Havyn’s response to the cast. We understand she may be really mad about it for a couple days. It’s bulky and a bit heavy. And it can’t be removed like her brace. If she get’s itchy or uncomfortable she has to learn to cope. I hate this part. Please pray that she’ll quickly adjust to it. We’ve been talking it up but I’m not sure how much our feigned excitement will help.
- That it will work! The goal is to help straighten her spine so that she can grow correctly and not have other complications. Scoliosis can affect a lot of internal things like breathing. The goal is not long-term correction — they still think she’ll face surgery someday — but rather helping her through the next several years until she’s old enough to be a candidate for surgery.
- Contentment without water. Havyn loves bath time. With her cast she can’t get in the water. No bath time. No splash park. No swimming. No running through the sprinkler. etc. Tammy’s friend Angie had a great idea about foot baths… we have a little pedicure thing and we hope she’ll enjoy that. And you better believe we’ll be spending her “week off” pretty much 100% in the water.
- Mommy and daddy. We want to take her problems away from her. She’s done nothing to deserve what she is enduring yet she is handling things so much better than either of us would. We continue to learn so much by watching her but we have our moments where the emotion of this takes its toll.
- Brothers and sister. They don’t truly understand and go through different emotions. There’s the genuine sympathy that they can show from time to time. But there’s also the jealousy they feel because she get’s attention. We try to shield them from that but it’s our normal.
- A miracle. Wouldn’t that be awesome?
Thanks for loving our family and joining with us in prayer!