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.
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. Continue reading “Semi-annual post, apparently!”
We’ve finally finished this post! Disclaimer- this is a really long post! It is more for us to remember details of the trip, but you are welcome to read it and take the journey with us. 🙂 If nothing else, scroll to the end to see a gallery with some memories from our trip.
This trip had been a long time in the making. We are so grateful to Make-A-Wish. It’s a tremendous organization that is doing tangible things to help ease the burden for so many families. We’re grateful for Jessica and Tamara, two volunteers who really sacrificed to help us through our journey. Also to Cassidy and Jennifer at Make a Wish.
Disney is by far the number one requested wish and it’s easy to see why. Make-A-Wish partners with a place called Give Kids the World Village. Together they really made us feel like VIPs. They totally rolled out the red carpet for our family!! Every dime of this trip was completely covered and they spared no expense. We didn’t deserve any of it but are so honored to have been able to go. In a very real way Havyn’s wish helped to lift her spirits and took her mind off of so much that she’s endured. Continue reading “Make-A-Wish Trip”
What a whirlwind these trips are! Doctors, doctors and more doctors. It is a bittersweet experience. We love our one-on-one (I guess it’s actually two-on-one😀) time with Havyn but hate that it has to be under the circumstances. We really got to see her personality blossom this trip. What a sweet, social, smart, funny, and amazing young lady Havyn is. If you have ever watched any of our Facebook live videos with her you have seen her charm. She is such a lovely little girl.
The next few paragraphs will detail what we spoke about with each of the doctors. If you want to get straight to the results, be sure to jump down to TLDR (too long don’t read) summary at the end. Oh and some pics from our trip, too! Continue reading “St. Louis Follow-up”
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!?”
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”