An Update

And we're back! Once again, it's taken me about a half a year between updates. The days are long, but the weeks fly by so quickly. McK (pronounced Mick) is in 10th grade. Her story (mentioned in the last post) was published. It is the first story in the 72nd issue of the Pediatric E-Journal for the National Hospice and Palliative Care Organization, starting on the 8th page of the pdf.

Overall, McKenzie has slowed down a lot over the last couple of months. She sleeps a lot more. She is not able to write very much. She has trouble breathing, even with her oxygen set very high (currently 10 L). Her overall oxygen saturation has lowered and her heart rate increased (in the 80s and around 120). Talking can be difficult. McKenzie has trouble concentrating. She is dizzy often and her headaches from her heart's inability to push blood. When she stands, it is way worse. 

McK's pain has not been controlled. So, Monday, her hospice team arranged for a double lumen picc line to be placed in McK's upper right arm (at the hospital guided by ultrasound). That was quite a day. Thankfully, our girl self-sedated and managed to sleep through the day without need for sedation medication (which she cannot have).

McK was started on IV medications to try and help better control the pain and allow McK some comfort. A pain pump was started Tuesday through the one line and the rest of her meds go through the second line. We're still working through the process, trying to find the point where McK is comfortable, but not knocked out from medication. It is a process and has been quite a learning curve for Dale and I to push IV medications (and measure them out) (and NOT cause infection). But, the switch means that McK doesn't have much medicine working its way through her digestive system any longer. And she has been eating a little more--not huge quantities, but I think she is probably eating a little more than she did a week ago.

Along with the sleepless nights, stress, learning a new normal and new routine, and all of the mental anguish that comes with those, we have had bright spots. The brightest of all was the publication of McK's first book: The Villains' Revenge. McK started working with Kids Kicking Cancer at the start of the pandemic (via zoom). She talked about her stories and wanting to become a published author. The team at KKC took that wish to heart and presented McK with her first professionally published book a week ago Thursday. What a triumph!!!! Thank you Kids Kicking Cancer, Elaine Serling, and their sponsor for making McK's dream come true.

McK knew the book was being published, helped choose the cover art they made especially for her, but thought it was coming at the end of October. You can watch the vide to see her surprise when the book was done on October 19:

To say that McK is excited to be able to hold her book in her own hands is an understatement. She is also excited that other people can read her book. You too can buy it on Amazon simply by searching for McKenzie Stothers or follow this link: "The Villains' Revenge" by McKenzie Rose Stothers.

We've had other highlights from the last six months. I will share pictures below.

In late spring, we decided to experiment and see if gluten bothered McK. It didn't! (At least not with all of the pain meds she's on.) Soooooooo everyone started bringing McK gluten filled food. She has enjoyed tasting all of the good things.

A donut made with gluten is a taste sensation compared to gluten free.

McK was able to sit by Aunt Courtney and Uncle Greg's beach on Fathers' Day (it was too cold to go in the water for normal people; teenage boys went in).

Ma and Sabrina took McK to a gluten filled bakery, where McK was spoiled by the bakery owner with all the treats.

Arizona cousins visited!!!!

McK and Dale were able to see "Elemental" in the movie theater.

McK was not able to leave her bed on Independence Day, but the entire family moved the celebration to our house so we could be together. Then, there were fireworks outside our front door for McK to enjoy.

Family staycation in July saw McK back on a merry-go-round.

And Rain Forrest Café

At the end of the staycation week, another dream came true. The princesses with Crowns Against Cancer made McK's dream of having a coronation come true. 

Crowns even made McK this beautiful cloak fit for a queen.

There was a full ceremony, complete with royal orb and scepter. Then they danced.

More gluten filled treats

McK's grandparents, Ma and Pap, got a new dog, Zonks. He's so tiny and cute!

A rose from McK's homebound teacher for the first official day of 10th grade.

When Jimmy Buffet died, we had margaritas (virgin, of course, for McK).

McK managed to travel for Mexican food and her first fried ice cream in September!!!

For rocking her flu shot and Covid booster, McK got some Halloween stuffys for her Halloween tree.

Showing off her new pain button. McK said she feels like she's on a game show.

We are looking forward to Halloween. McK has a surprise costume based on one of her characters from one of her stories. I'll have to post pictures of that later. Can't ruin the surprise. 

Thanks for checking in on our girl.

Mel