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We are so sorry that we haven’t posted Havyn’s MRI results sooner! Read below for those and make sure to check out the photos at the end!

So do you want the not-so-good news or the good news first?  Let’s start with the good news.  The optic glioma and the spinal tumors are stable and there’s been no progression of scoliosis.  PRAISING GOD for this!!! These are the reason Havyn started chemo, so we are grateful they aren’t growing. They haven’t grown a bit in 18 months so that’s a big time win! Continue reading “MRI Results and Some Pics”

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! Continue reading “Cast #4”

Havyn had chemo on Tuesday and did fantastic.  She had a bunch of cheerleaders this time.  Emma Catherine, who has been helping me during camp with the kids, Henry, Amelia, Arlie, Daddy and Mommy.  After chemo we headed to Kentucky Kingdom for a few hrs to give Havyn time to enjoy the water park!!

This morning Havyn had counts at the clinic in Louisville.  She asked for Arlie to come with her and hold her hand.  He was happy to come along.  We were bummed to hear that her counts were low.  However, they are running consistent with how they usually run at this point in her chemo cycle.  She has this week and next week off from chemo so that will give her a break and time to get those counts back up! Continue reading “Cast #3 and MRI”

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:

1. 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!
2. Little brother Arlington just turned 2! It’s been birthday season in the Young house!
3. Henry finished first grade and Amelia graduated preschool!
4. Mamaw (Tammy’s mom) finished her chemo!
5. 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.
6. 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!
7. 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.
8. 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.
9. 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… Continue reading “New Friends, a Cast Removal, and a Bunch More”

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. Continue reading “Happy Birthday Tammy! (and a few updates)”

Havyn did well at chemo today. This was her last infusion of this round so she gets a two week break! The MRI she had yesterday showed some good news and some news that we are still not sure about. The good news is that her optic nerve tumor is stable and not growing meaning the chemo is still working. The other news is that she has more NF related spots in her brain and spine. Continue reading “What we (don’t) know…”

Just a quick update to let you know that Havyn is home and doing great! She has her new cast on and is sleeping soundly right now. She was exhausted after a long day at the hospital!

She has chemo in the morning and we hope to discuss the results of the MRI with the oncologist at that time. We’ll post anything we learn along with (hopefully) a photo of her with her new cast on.

It’s been a while since we’ve posted so I may try to cram a bit in this post. The brief version is that a couple weeks ago Havyn got her cast off. We took the family to Sevierville, TN and where we had some quality family time and Havyn got to swim to her heart’s content. Right now we’re in Cincinnati where she’s getting an MRI and a new cast.

If you want to hear more about our escapades and see a few photos, read on. Continue reading “It’s Time for Cast #2”

If you didn’t hear, we had a crazy night last night. Yesterday Havyn was sick all day. She had thrown up earlier that morning and then to the potty all day. About 3:00 she had a fever. So off to ER we go. ( Thankful for friends and family taking care of the other kids). Steve stayed back to take Henry and Amelia to the ball fields for practice, while I headed to the zoo, otherwise last night known as the ER at Norton Childrens. I felt so bad for all those people waiting to be seen.
While we were waiting on the doctor, Steve called and said, “I am about to make your night even worse. I am headed to you right now with Henry, he just got hit in the mouth with a baseball and knocked his tooth lose!!!” Excuse me, “WHAT????”

So the two H’s, Henry and Havyn, in the ER together. To be honest I am still in shock, still processing. I am learning to not speak my fears. I am telling you, just Friday I was having dental work done to my front teeth and telling Dr.Hurm one of my worst fears is for my kids teeth to get knocked out. I don’t know if it is God showing me that I can face my fears or if it is the enemy blowing his tongue at us saying , na na na boo boo, I know what will get you. Either way, our hearts were broken and torn last night. As I stayed with Havyn in one room, Steve hung with Henry in the other. Once Havyn got to sleep, I ran down to see Henry.  Just in time to watch the Dentist cleaning him up and setting his tooth.  God gave us some amazing kids.  They are strong and brave!!  I watched Henry endure a ton of pain last night and he said it didn’t hurt.  Ya’ll God is good!!! We are so blessed!!  The verse that keeps coming to my heart is 1 John 4:4, “Little children, you belong to God and have overcome them, because the one who is in you is greater than the one who is in the world.”

Henry and Steve went home last night and as far as I know slept pretty good.  They headed to the Dentist this morning for an X-Ray and exam.  Good news is his bone didn’t look like there was any trauma to it.  Praying still that he has no real issues with this in the future.  Please pray specifically that… Henry’s body doesn’t reject his tooth and therefore loose it or be discolored, that he doesn’t have to have a root canal and that it heals correctly.

Havyn has done well.  She had a 100.5 temp when I called the doctor yesterday and they said bring her in.  She was just puny but acting fine.  Her blood counts were all great last night.  This morning, not so much.  Not too concerned, they think it is from the virus that she is fighting and possibly from all the fluids she is getting.  They gave her another round of antibiotics as a precautionary measure.  Right after that she got really nauseous and tired.  She demanded 🙂 a throw up bag and then guessed what color it would be.  She guessed purple, it was green. 🙂  Thankfully it wasn’t put to use!!  The nurse, Sable (super sweet), got her zofran and all is well.  I have asked for another CBC to be done before we head home so I am not wondering if her counts have gotten better or worse.  We should be going home sometime today.  Apparently, we are still waiting on more doctors to look at her.

Thankful for the slew of people that helped Henry last night at the ball fields. Those who have helped juggle Amelia and Arlie.  Mom, O’Neals, Teresa for taking Amelia to dance today.  Weekday childcare- EVERY.SINGLE.TIME. I am signed up to volunteer, a kid is sick and I can’t!  I am SO SORRY!  For The Milsteads for bringing dinner tonight!  We couldn’t make it without your prayers and support!!!  Thanks for loving on us!!

Havyn heads to St. Louis about every three months to see doctors at St. Louis Children’s Hospital. We started this about six months ago. Dr. Gutmann leads the NF Center here and they specialize in her genetic disorder, Neurofibromatosis Type 1. Overall we got great news this trip. Here’s the scoop: Continue reading “St. Louis Recap”