Havyn has been doing very well. The main reason for the lack of posts in recent weeks is that it’s been “business as usual.” She’s continued to receive her chemo treatments every Tuesday and has had no significant complications. Her blood counts have been up and down, but have been good enough to continue with treatment. Here’s some highlights about Havyn and our family:
- She turned 4 since we last posted! She wished for a Chuck-E-Cheese birthday and got her wish! The non-stop smile on her face was such a thrill! Thanks to Heitzman Bakery and Icing Smiles for the cake!
- Little brother Arlington just turned 2! It’s been birthday season in the Young house!
- Henry finished first grade and Amelia graduated preschool!
- Mamaw (Tammy’s mom) finished her chemo!
- Aunt Jamie (Steve’s sister) visited us from San Diego for a few days. Aunt Amy brought Gabe (and Cameron and Hayley) up for a visit, too.
- Havyn did great at chemo yesterday and she now has only FIVE more treatments left! What began a year ago is now winding down! By the end of August, if there are no setbacks, we should be celebrating the end of this chapter!
- She got her cast off today (gives Independence Day another meaning) and will get her new one on July 17. A trip to the water park is in store for this week, and we head to summer camp this weekend. Havyn will get all the water time she can handle! You can see her cast removal on Tammy’s Facebook page if you’re interested.
- She’ll have an X-ray of her spine when she gets her cast. We’re hopeful that the X-ray will show that her scoliosis is stable or improving. A lot of NF-1 related curves don’t respond well to treatment so we’re hopeful for good news.
- Havyn will get another MRI on July 17 as well. We’re hoping for another stable report. We’d love even better news… wouldn’t it be cool if those tumors were shrinking? Or gone!?
All things considered Havyn is doing quite well. We’re grateful for your continued prayers.
A few more thoughts, some photos, and some new friends below…
I was thinking yesterday how polarizing this journey is. No child – or adult for that matter – should have to go through this. Havyn’s vocabulary includes words like chemo and port. It’s cute but heartbreaking to hear her tearfully cry, “is she going to access my port, daddy?” Tuesdays are my least favorite days. Watching my girl get poked and prodded… listening to her scream through the anxiety… staring at the drip-drip-drip of the poison entering her blood stream. But Tuesdays are my favorite days. The special bonding time is a welcome silver lining. We will have so many memories of our Tuesdays downtown. For our benefit when we look back years from now:
- Don’t Break the Ice
- Spongebob Matching Game
- Coloring books
- Monopoly, Jr.
- Scooby-Doo movies
- Honking in the tunnel
- Trips to Wendy’s
- Slushy stops at Thornton’s
And to watch her adapt to her new normal is sweet and sad at the same time. She gets excited to show her port to a new friend. And she likes showing off her cast. “Look. I have a cast on. I have to wear it because I have a crooked back.” When we head to Kentucky Kingdom and the other kids are jumping in the wave pool, Havyn will soak her feet at the side, completely content. I don’t think four-year-olds are supposed to act that way. What an amazing gift! It’s her normal and it doesn’t seem to bother her. One of her favorite “make believe” games to play is chemo. She’ll take one of her favorite animals and talk to them so sweetly. “Don’t cry. It will just be a little finger poke while we check your counts. Now I just have to clean your port.” She’ll sing to the animal and go through the whole routine. It’s a beautifully sad thing to watch.
And we continue to be amazed by the others we’re meeting. Let me tell you about a few:
Eric. This sweet young man received an ugly brain cancer diagnosis in recent months. He went from a high school football player to now being mostly confined to a wheel chair as the cancer has paralyzed half of his body. He is incredibly brave, very funny, and a completely charming gentleman. We have enjoyed getting to know him, his mom Neice, and the rest of his family. Please join us in loving and praying for Eric. He leaves tomorrow for his Make-a-Wish trip to Miami.
Rushell. Tammy and Havyn were on the RollerSkater ride at Kentucky Kingdom while I waited in line with the other kids. I looked to my left and saw Rushell. Because of some neurofibromas on her skin I was pretty sure she had NF-1. I walked up to her. “This might be totally rude, but do you have NF-1?” She nodded. I pointed to Havyn. So does my daughter. After the ride we stood and talked with Rushell and her grandson Blake for at least 15 minutes. Her grandmother, mother, daughter, and now grandson all have NF-1. Rushell is a true inspiration to us. She was raised largely in foster homes because she lost her mom at a young age due to cancer. She has bravely fought for so many years. And not just the physical pain but the emotional pain as she feels different and has to deal with the stares of strangers. She is a beautiful woman, inside and out. She as worked as a server since she was 15 and now works at Golden Corral on Preston Highway. We went and sat in her section on Saturday. What an amazing woman! Please pray for Rushell and Blake and the rest of their family.
Bella. We met Bella yesterday. She was in the infusion center today. She just turned 3. She has an optic glioma, just like Havyn. Today was her first chemo treatment. She’s starting chemo almost at the exact same age as Havyn did. Please pray for Bella and her parents. They have a long road ahead.
We sure appreciate our family and friends so much. Here’s some photos for you!