Author: Steve Young

I have often said ( Tammy speaking here) that I know there is a train coming.  I just don’t know when it is going to hit and how bad the trauma will be. We have had a little more than a year break from treatment mode.  Yes, Havyn has still had to brace and do MRIs but thankfully nothing like casting and chemo. It’s been nice to have a bit of a break from all the craziness of treatments.  The train is coming. I can hear the roar from the locomotive rushing down the winding tracks. Anxiety, anger and frustration are a few of the emotions that we have felt from the news we received last week.   Continue reading “Unwelcome news…”

Sheesh what a week!  Doesn’t it seem sometimes that life is like drinking from a water hose? That’s been the case lately! We are in a crazy busy season but we’re trying to have a good time in the process!

Havyn turned 6 on Tuesday, and this family LOVES to celebrate!!! She was laying in bed on Monday night, restless, when she looked up at me (Tammy) and said, “Mommy, I just don’t know what it is going to look like?” She was talking about how the kitchen table would be decorated when she woke up. She finally fell asleep and we got things ready. We made sure to set up the wall of streamers, too. (Thanks to my friend Kat for the fun inspiration!) Havyn had so much fun running through the streamers and then we proceeded to enjoy a special breakfast. Continue reading “Birthday, MRI, and Making Wishes Come True!”

One of the most common questions we get is “how’s your girl doing?” We are always happy to answer, “She’s doing great!” And she really is. Of course, until there is a cure for NF-1 and it’s symptoms, she’ll never be out of the woods in this life. But all things considered she really is doing quite well. And MAN have we been busy!?

Last month she had her quarterly MRI scans. The results were once again stable. Tumors still exist but they aren’t advancing. This is good news.  We were a bit concerned heading into the MRI. Toward the end of 2018 and early in 2019, Havyn occasionally complained of horrible headaches. She’d be inconsolable until, after 20-30 minutes, the headache would pass. Usually she’d vomit and be back to her old self. These seem to have stopped, thankfully, so we really don’t know what caused them. We were concerned that there was tumor growth, but NOPE all is stable.

Continue reading “Stable MRIs, Florida Getaway, and more!”

Almost every day one of the kids asks, “How many days until Disney?” The anticipation meter is through the roof!

We haven’t updated in a while and I don’t know that we’ve ever posted much about Make-a-Wish. Well… here we go!

For those of you unfamiliar with Make-a-Wish, they are a fantastic charity that makes it their mission to grant wishes for children with critical illnesses. We were referred to them probably about 2 years ago and a bit surprised to learn that Havyn qualified for a wish. I’d always been under the assumption that Make-a-Wish was only for kids with a terminal diagnosis. In fact, a majority of these kids “go on to achieve their dreams and give back to the community.”

The Make-a-Wish people are pretty insistent, and with good reason, that the child choose their own wish. So about a year ago we sat down with Havyn and set the stage. “Alright baby girl… you can wish for anything you want! Dream big! Do you want to go somewhere special? Do you want to meet someone special? Do  you want to do something special?”

Havyn thought for a few moments, mulling things over. “Ummm… I think I want to go to Chuck E. Cheese!” Haha! Not exactly the big dream we were hoping for but it was her dream… so I said, “WISH GRANTED! Daddy’s taking care of that one. Now let me tell you about this other mouse…” Continue reading “2 days until St. Louis, 16 days until DISNEY!”

So this has been a whirlwind. The community where we live, Anchorage, is split through the middle by train tracks. Each year there’s a North/South basketball game played in the school gym. The game is next weekend and two nights ago, one of the dads (from the other side of the tracks) contacted us with an idea.

Craig’s son, Holt, is just 5 years old and has been battling a rare cancer, Ewing’s Sarcoma. He pitched an idea that the players in the game could wear shirts honoring our kiddos. Fast-forward 48 hours and the proper approvals have been secured, the shirts have been designed, and the plan is in motion!

For those who want to get in on the t-shirt party, they are $15 each and net proceeds will benefit the Children’s Tumor Foundation and the Oncology Unit at Norton Children’s Hospital. Continue reading “Shirts!?”

Regardless of how you may feel about immigration bans, border walls, and sanctuary cities, I think we can all agree that we’re happy that Havyn has been deported!

Dr. Downard, who is the same doc who inserted Havyn’s port, just successfully removed that bugger and Havyn is waking up from the anesthesia. She did perfectly! We’ll be here for a bit longer and then she’ll go home for some more rest.

They gave us her port to take home with us. Big brother Henry lost a tooth yesterday and was visited by the Tooth Fairy overnight. We’re not sure if there’s a Port Fairy, but we’re going to put it under her pillow tonight and see what happens! What do you think the port fairy should bring? Leave your ideas below!

The Young kids enjoyed the most joy-filled Christmas season! They’ve had indelible smiles on their faces through all of the family time, gift giving, and celebrating. i wish I had time to share about all of our yuletide shenanigans — and maybe we’ll post some photos soon — but the main reason for this post is to invite you to pray for Havyn’s scans tomorrow (Thursday) morning.

This brain MRI is kind of a milestone one. If results are stable then she gets to have her port removed. The chemo was being used to primarily treat her optic pathway glioma and that has been stable since the start of chemo more than 18 months ago. Please join us in praying for another stable result!

Many of you read Tammy’s Facebook post and may remember the news from our most recent blog entry. Continue reading “New Year, New Scan”

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…”