Semi-annual post, apparently!

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!”

Make-A-Wish Trip

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”

St. Louis Follow-up

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”

MRI Results and Some Pics

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”

Cast #4

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”

Cast #3 and MRI

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”

Our crazy H’s in the ER

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????”

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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!!

I saw Havyn kissing Santa Claus!!!

So amazing how God allows peoples paths to cross in perfect God timing!  Blows me away every time.  After chemo on Tuesday, Havyn and I went to Thortons to get her “after chemo slushie!” (Thanks Amanda for the slushie gift card!)  I almost took her home before my chiropractor appointment, but she was excited that mommy had to go see the dr and not her.  I have had some back pain for about a month and just now getting around to making an appointment.  Just so happened that at 4 pm I would be at Dr.Drews office getting adjusted at the same time that Santa Claus and Mrs. Clause would be there getting adjusted too.  Dr.Drew (shout out to the best chiropractor in the world. He is at Louisville Health Solutions. Go check him out!!! http://louisvillehealthsolutions.com/) knocks on the door and says, “Havyn, I have a special visitor for you.”  Low and behold here comes Santa Claus.  Her face, ya’ll!!!!  PRICELESS!!!  My phone had no more space for pics but thankfully, Santa handed me his phone and said here take pictures and email them to yourself.  You don’t understand, unless you have met this Santa, how special he is!!!  Ya’ll, he and his sweet wife are filled with the Holy Spirit!  Full of JOY!!!

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As he held onto Havyn he shared his story of loosing 2 daughters in a car accident in 1989.   Watch this video and grab your tissue box!!!  It is unbelievable!!!  After seeing this you will know why he is the real deal!

 http://www.wave3.com/story/30741033/ghost-of-christmas-past-doesnt-haunt-santa-walt

Continue reading “I saw Havyn kissing Santa Claus!!!”

OMO we go!

Can I tell you how incredible this Havyn is? She is a rock star! She takes chemo like a champ!!! (Insert, God is amazing!) Her counts are still dropping, but was high enough to get chemo today! (ANC 1200, Hemoglobin 8.3) Praise God!
We are at OMO (Nortons Hospital) today instead of HEM/ONC. Here we have a private room with bathroom and bed, free parking and lunch served. Chicken fingers, mac and cheese and mashed potatoes with vanilla pudding for desert. The mac and cheese and pudding was a hit! Kind of nice!! We do miss the community at HEM/ONC though. So we will more than likely do chemo there after her 3 week break. She has chemo again on Jan 31.  A much welcomed break ahead of us!!  At this point in time we have about 20 chemo treatments left!!!

Continue reading “OMO we go!”

An MRI to welcome in 2017

Nothing like a 6 am MRI to celebrate the beginning of 2017! It’s amazing how well Havyn does with these. She has graduated from having the yucky medicine (Versed — pronounced: verse-ED) shot up her nose to now actually drinking it. This makes MRI’s so much easier. The Versed makes her really loopy and kind of drunk. It helps take her mind off of getting the IV and with separation anxiety. We do the meds via IV and not her port because of the risk of infection. The more her port is accessed the higher risk of her getting an infection. Continue reading “An MRI to welcome in 2017”