Fishes for Marrow Wishes: Long Term BMT clinic and more--Evie/Isaiah have Chicken Pox--Overview of 2017!Fishes for Marrow Wishes

(April 1, 2024) -- Today

This post was written 6-8 years ago. I suppose I wrote it in an attempt of catching up. I just logged onto the blog today after a very long time and realized that I had created this and never published it, so for the record and considering all the trouble I went to making this post, I suppose I better post. Maybe I will revive this blog and start keeping it up so I can have a digital journal once again of our little family that has already grown so much. -Lisy

...a current update is due.

Several months ago (Jan. 2017) Natalie and Alice had their annual long term follow up with their bone marrow doctors. The doctor we saw is new to Salt Lake. We have seen some doctors come and go over the years...but with that said, the bone marrow doctors usually stick around for a long time.

Some nurses almost didn't recognize them, they have grown so much.

They love to peek in at the gift shop.

It's been a while since these girls have walked through these oh so familiar doors.

It was nice to see so many nurses and familiar faces. We love to visit now and still feel "at home" each time we go.

The doctors reviewed all the labs with us between Natalie and Alice. Everything was mostly normal and looked very good. A few things were a tad low. Nothing alarming or abnormal. Like with any healthy person, labs can fluctuate, especially platelets, which is what was low for the girls.

Natalie's lung testing wasn't as high as we hoped. Her last two tests showed some slight decrease in her lung capacity to fill and exhale completely. This could be that she needs to be more diligent with her medications, or that she is building some scar tissue in her lungs. We hope it's not scar tissue building up. We will continue to bump up her steroid inhaler and follow it closely. Her lungs have taken a huge hit over the years with everything she has been through.
We have to focus on how far she has come and how much she has been blessed, rather the fear or worry of the future.

Alice continues to take growth hormone via injection daily, and Natalie continues with her seizure, estrogen, allergy, nasal and lung medicine. For the past 7 months Natalie has had the hives, but with allergy medicine they can stay under control. I continue to ask the doctors about this and we are advised to continue the Zyrtec and that it is her immune system acting up, with little understanding of why. I am unsettled though by her chronic hives. In the back of my mind I worry about it being related to her transplant, naturally.
I also wonder if it is the guinea pig causing hives. We had her tested for guinea pig allergens, but it was negative. Thank goodness, Natalie's guinea pig is like a child to her. It's cute how she loves her guinea pig, Ginger. In fact I'm not going to lie sometimes it's a bit over the top with how she talks to Ginger and loves her, but we are glad she has something to connect with and care for.

Ginger

As far as the rest of us...we are great! The kids are involved with some great things. Matthew and Blair love sports, currently playing baseball and football. Natalie loves her music, acting, and art. Alice and Evie love playing house and making messes. Alice did play soccer and enjoyed it so much that she wants to play professional someday ;) She wants to do everything professional. Today she said she wants to Dance on America's got Talent. She dreams big! I love that about her.
As for Evie she is an incredible gymnast. I have been coaching her class at the recreation center and she blows me away at how good she is. I want to put her in a more serious gym but I'm afraid of such commitment. :/
It is so hard to have kids in competitive activities and still have family togetherness time. A constant battle within our society these days.

June 2017
Evie is currently under the weather with the chicken pox. We have no idea how she picked it up. She is managing it well and seems to have a mild case. We are crossing our fingers that Natalie and Alice won't even know it came through the house. I have to admit, I have such a horrible memory of this from when Alice and Natalie had it that I sometimes catch my mind slipping back into the awful feeling of panic and worry. But then I stop myself and think, "they will be fine". Which they should.
The rest of the kids are super bummed because they can't go to Camp Hobe this year, as we are exposed to the chicken pox. We are glad it manifested before they left, it would have been horrible to bring that to Camp Hobe, even though the older kids who were planning to go, were not the one's with the disease, it's not worth putting other's at risk.

Evie with the Chicken Pox

Fast forward a couple weeks....end of June 2017
Isaiah came down with the chicken pox. He is miserable. Poor guy got a full blown case of it. Even a full blown case for him seems so mild compared to when Alice got it. We will always be thankful for a healthy immune system.

Isaiah with the Chicken Pox

Poor Baby, I was hoping I would never need that pink lotion again after Alice's case, but I was glad to still have plenty on hand for when Isaiah needed it.

On the mend.

Tyler is busy at work while doing things on the side to earn extra money to support us. I am so amazed at how hard he works and how disciplined and motivated he is. I am so thankful for him.

Over Memorial Day weekend we slipped away with the kids to Island Park, Mack's Inn. It was the perfect vacation. We couldn't have had a better time. The kids loved it too!! We fished the lazy river, played on the dock catching little minos, fished the little brook, floated the river, played games, ate a lot of treats and had a yummy fish fry. We were surrounded with lots of wonderful family and extended family. We rented an old cabin style room and it was perfect for a fishing trip.

Matthew Hope of America. A wonderful program to instill patriotism into each of us. The songs are oh so familiar year after year and that is what makes it so great.