Okay… it’s been far too long. We’ve heard from so many of you asking for updates, and we keep promising one. So here it is!
So the news on Havyn is good. There are details below, but the TLDR is that everything is stable. We’ll tackle that stuff first and then we have a few personal updates to follow.
Since our last post, Havyn turned five, Arlie turned three, and all of the kids started their new year of school.
Medically, Havyn got out of her 6th cast and into a brace in June. She wears this removable brace for 20+ hrs a day. Yep, she has to sleep in it, but she can take it off for baths and little breaks. The first few days with this new brace made for a harder transition than we expected, but she adjusted so well. In true Havyn form she just rolls with the punches. She is a usually a great example of being content no matter what life throws at her. We enjoyed the summer with lots of lake time, pool time and bubble baths. It seems like a lifetime ago now that she was constrained in those casts. It’s remarkable how long something can seem when you’re in the thick of it. Looking back, though, it was just the blink of an eye. In the midst of the muck it is hard to see the light or the end. If you’re in the middle of a difficult season, hold on. The Lord gives strength and he is faithful to see you through.
Havyn had routine MRI scans in July and November. Both of them showed the news we like to hear: STABLE! This means that the tumors in her brain and the one in her spine have not grown. Praise God. She had her year post chemo appointment with Dr. Mikey and that went just swimmingly.
We are still waiting and praying for the day when the scans are even better than stable. Can you imagine a doctor saying, “there are no tumors here!”? That would be remarkable! In the meantime, we’ll continue to take things one step at a time and, in the words of Colossians 3:2, fix our minds on things above, not on earthly things.
We’re giving Him the credit for a pretty cool story. We chose not to post about precocious puberty when she first started it nearly a year ago. We wanted to wait until we had more info. Havyn was showing signs of early puberty. We were not ready for our FOUR year old girl to start going through that body change! Needless to say, we were quite concerned. She had blood draws and tests run. There was an indeed an elevated hormone signal so the doctors ordered her to start a hormone therapy that is essentially a pause button for puberty. This would involve expensive, routine shots, so we were less than excited. It was a bit of an insurance fight, but a couple months later the medicine was ready. Here’s the crazy thing. In that time we began to see the signs of puberty reversing. We were becoming convinced that she may not need the therapy after all. We prayed and sought second opinion. Sure enough… there were no more signs of puberty. No hormone therapy! Miracle! Praise God for a prayer answered!
Two weeks ago we picked the girls up from school to head to Cincinnati Children’s Hospital so Havyn could have a followup with the spine doctor. Amelia was Havyn’s support for the trip. Amelia is really good at nurturing and she just needed some attention! 🙂
The first step was an x-ray of Havyn’s back. When we got to the room the nurse pulled up the x-rays. Havyn said, “ Mommy. Is that my back?” “Yes, Baby it is,” I replied. “It’s still crooked,” she asked? I said, “Yeah, we just need to keep praying that God will straighten it.” Havyn got quiet and she said, “I just prayed in my head mommy.” “You did? What did you pray?” I asked. “ I prayed that God would straighten my back without having to have surgery.”
We looked at the x-ray and it looks worse to us. I glanced at Steve and said, “I don’t think I am ready for what the doctors are gonna say. ” He agreed. A doctor we hadn’t met before then walked in. I noticed on his coat that he was part of the surgery team. My heart sunk! He asked Havyn some questions and then there was a knock on the door. A flood of people came in, including Dr. Sturm who is Havyn’s orthopedic surgeon. He and his crew looked at Havyn and asked some questions. Our hearts sunk a little more as each moment passed. Then he says, “She’s holding at 59 degrees!!!” YES!! Praise God this was great to hear. Holding means that we just keep bracing. He still urges us that this is not a fix for Havyn, it is inevitable that she will have to have surgery but he wants to put it off as long as he can for her sake. I still would love for Dr. Sturm to see a miracle from God happen. So I am praying boldly that God would straighten Havyn’s back. Would you join us in this bold prayer?
While we were there, Steve was able to visit with a sweet teenage boy from our church who is fighting for his life, battling cancer. Would ya’ll pray for Clay Collins as well?
Okay that concludes the major medical updates. Here’s some personal stuff in case you haven’t been around our family!
It’s been a season of crazy. A different crazy than before. I (Tammy) started back to work again this summer. Just a few sessions to ease back into a passion of mine. Steve and I finished up my new website. It has been so fun for me to get back behind the camera again. What God pruned back before Havyn starred chemo has begun to sprout again. I was doing some self reflecting lately and I’m really just in awe of how God has directed my paths. I am so grateful that He is in control of my life! I usually make things a mess when I try to be in control. He is so faithful to open doors and close doors at just the right time. Anyway, between working, Steve’s ministry and juggling between my mom’s (Jenny) and Havyn’s doctors appointments and kids school schedules, I am praising God to be alive. 🙂
In May we celebrated Havyn’s 5th birthday. She wanted an art party so our sweet friend Misty hooked her up!!! We painted canvases, busted paint filled balloons and celebrated sweet Havyn.
The day after getting Havyn’s new brace we enjoyed a play that Henry and Amelia did for the end of their drama camp. My sister is the amazing drama director at Highlands Latin and she held summer drama camps. Henry and Amelia got to be a part of that this year and had so much fun. They performed Wizard of Oz. Thanks to my sister we got the privilege of listening to “Ding Dong, the Witch is Dead” for weeks.
After this we set off to our happy place in Grand Haven, Michigan to enjoy a long vacation on the Lake. We celebrated Arlington’s birthday with Grandma Great, Lyle, Nana, and Grandpa Lloyd. We also were able to be with Steve’s Dad to celebrate his birthday and Fathers Day as well. Oh, and we also got to hang out with Steve’s sister Rani and her boys, Aunt Lib, and cool cousins from California. It was a great relaxing trip.
In August the kids started school. Henry’s in 3rd grade, Amelia is in 1st grade, Havyn is in Kindergarten and Arlie is in preschool 2 days a week.
Daddy and the girls enjoyed a night at the Make a Wish Gala while the boys and I went out for IHOP! 🙂
Henry played fall baseball. Amelia started gymnastics. She now loves doing cartwheels and the splits all the time.
In September, Havyn lost her first tooth. Amelia still hasn’t lost any and she is NOT happy that little sister had a tooth fairy visit before she did.
Henry and Daddy took a trip to surprise Nana for her 70th birthday.
Steve and I went to a symposium in St. Louis to learn more about NF and the research that is being done to advance the treatment of this dumb disorder. We had a fun trip and learned that there are a lot of really smart people researching NF and we are super grateful!
October was the month of way too many pumpkins for the Young family. Thanks to school field trips and an outing with our friends at Gilda’s Club, we visited the pumpkin patch 3 or 4 times.
The Iron Bell Family Festival was fun and it was great getting to sing bluegrass music with my family!
We had the Renner Family reunion singing up here in Louisville. It was a crazy weekend, but was great to spend time with family!
The kids got all dressed up for Trick or Treating with friends! The neighborhood behind us is crazy for trick or treating… the candy haul was overwhelming!
Finally I wanted to share an update on my mom for those of you who have been asking. My Mom beat cancer a year ago and as a result from the treatments she had, she has been dealing with localized osteoporosis in her back. She is in extreme pain about 70% of the day from compression fractures in her spine. She isn’t getting around well and has been nearly bed ridden for a few months now. She will push herself to get out with us some, but not without a lot of pain. Since she stays with us so frequently, we made the decision to move her room at our house from our guest room upstairs to where the girls room had been downstairs. The girls moved to the boys former room and the boys moved upstairs to our old guest room. I never dreamed that moving rooms around could be so involved! Amelia wanted a pink room so bad and was amazing at picking out just the right wall paper for the princess room.
Here are a few photos… enjoy!