It’s time for cast number 4 time and MRI number who-knows… we’ve stopped counting. Life has really been a bit of a whirlwind over the past several months. We’re sorry we haven’t posted any updates. I guess it’s been a good thing that there hasn’t been too much to share – medically speaking.
A couple weeks ago we removed her cast at my (Tammy’s) family reunion. We then headed north to Cincy for a fun night at Great Wolf Lodge. We made lots of great memories. There’s such a great joy to watch Havyn splash around in the water. We’ve let her take nice long baths and plenty of showers. Sometimes multiple times a day. And why not?!!! It will be 2018 before she can get wet again, so soak it up girl!
As we type this, we’re in the waiting room at Cincinnati Children’s Hospital. We drove up last night for an early appointment this morning. Before checking into our hotel, we hit up our favorite new restaurant, LaRosa’s, for dinner with just the 3 of us. And the balloon guy Dave was there! (his site) She was beside herself. This was the same place where we ate when we were up for Great Wolf Lodge. If you are ever near the Landen LaRosa’s on a Monday night, stop in for a great deal on kids’ meals and some awesome balloons from Dave. Havyn picked spider-man. 🙂
After dinner we made our way to the hotel where Havyn splashed around one last time in the hot tub. She loved every minute. Then back to the room for a quick shower and to get tucked into bed.
This morning we were up early for one last bath and a short drive over to the hospital. This kid rocks when it comes to the no eating and drinking thing. Thankfully there was an earlier opening so she didn’t have to go too long with a grumbly tummy.
For this trip, they have us at the Liberty Campus. It is still Cincinnati Children’s Hospital but a different campus. It reminds us a lot of Norton Children’s at Brownsboro. It is a newer location and overall just a less rushed and stressed atmosphere. That is, after the family with the multiple screaming children left — bless their hearts and our ears. 🙂 I don’t know anyone who has screaming children.
Okay, so Dr. Sturm just met with us. Havyn did great. She had an MRI of her brain and spine. We are hoping for stable results. After 90 minutes or so in MRI, Dr. Sturm applied the new cast. He said it went well. He reminded us that this casting won’t cure her scoliosis and we’re still looking at surgery down the road. He did give us some hope that they may be able to try a brace instead of a cast at some point. Last time the brace didn’t help, but he sounds willing to give it another go.
We’ll get to go back and see her soon. She chose pink for her cast color. Hopefully she won’t be too miserable as she comes out of anesthesia. After she wakes up and they get her cast trimmed up, we’ll start our trip back home. Havyn told us that she really wants to stop at Waffle House, so it looks like we’ll be eating like kings and queens tonight. (Steve said we might even spend some time on the throne when we’re done.)
Daddy taught Havyn a new term this morning: bittersweet. He explained that getting a cast is bittersweet. It’s bitter for sure. It’s clunky, uncomfortable, and makes life pretty difficult. No baths. No run through the sprinkler. Hard to balance. Lots of trips and falls. Very bitter. But it’s sweet, too. It’s helping her out quite a bit. Havyn knows that she has “a crooked back” and talks about it quite a bit. Knowing that this is helping keep her straight is sweet for sure.
And it sure is a bittersweet adventure. A little picture of this is when she gets anesthesia. We get to walk into the induction room with Havyn and hold her hand as she inhales gas (strawberry flavored this time) to put her to sleep. I love being with her, but it really breaks my heart to hold her hand and all of the sudden it goes limp. No words!!
As for where we are in the overall journey: Havyn finished chemo on August 29th. (Kind of surprised we failed to update the blog after that minor (not!) milestone.) Man have we celebrated! Lots of parties and lots of friends congratulating her. What a very sweet thing to not have to pump that poison into her every week.
She has had one port flush since then and will continue to have port flushes every 3-4 weeks until January, hopefully. To her, port flushes are the same as chemo. She still has to have her port accessed which she hates. Thankfully it is quick and they don’t have to tape a line down. One of the worst parts of chemo for her was having the tape pulled off at the end. You should have seen her face when we talked to her about having it flushed but that there’d be no tape. Her eyes got huge, and so did her smile, and she exclaimed, “NO TAPE!?”
We have an appointment with the oncologist next Tuesday to discuss the MRI from today. If there is no growth in the tumors, then we’ll continue to wait. If her MRI in January is also stable, she’ll be able to have her port removed and we’ll officially close this chapter of her story. She will continue to have MRI’s and new casts every 3 months. If scans stay stable, they’ll reduce the frequency to annually.
We continue to meet others on this road. We are still praying for our buddy Eric Goodwin. He is now 18 — he had a birthday in September. He and Havyn are good buddies. Please continue to pray for him and his family: Eric, Necee, Granny, Shaunti and Derek.
I (Tammy) have been texting with a new family who has a teenage son with terminal cancer. His name is Darnay and we’d would love for you all to pray for this family as well. His mom and I have been trying to find a good time for us to meet. Darnay hasn’t been feeling great.
My friend Spencer who is the social worker at chemo clinic and I have been meeting and discussing ways that our experience can help other families at clinic. We are enjoying still being connected to the clinic without having to be there for Havyn. We are so excited about the opportunity to come alongside the staff and the families. I told Spencer that I just wish there was a way I could make a living working in that field without having to go back to school to get a Masters.
Thanks for your prayers!! It is a long journey and we are grateful that you are faithful prayer warriors. I can tell you the prayers help! God is protecting Havyn and it has been so cool to witness His divine protection over her.
If you’re ever in our neck of the woods and see cars in the driveway, stop in and say hey. We love you guys! (We’ll post some photos sometime soon.)