Chemo Round 3: Day ?: Always Expect the Unexpected

So yesterday was supposed to be day 1 of Round 3 of Shyanne’s treatment for AML. We had been home for around three weeks this time due to her numbers not recovering quickly. When we got to clinic her numbers were AMAZING as her ANC was 3000! It had more than tripled since last week.

As you can see from the Instagram screenshot she had not been feeling well. It had started on Sunday and we weren’t exactly sure what was going on because she would be kind of puny first thing in the morning but after throwing up she’s feel better and be her normal little self… at least until Monday.

It took her a bit longer to get back to sorts but she did feel better later in the afternoon… after I had called the pediatrician and the clinic. We were prepared to go to the ER, if anything changed for the worse or if any new symptoms arose.

She has been chewing on everything and drooling a lot so we weren’t sure if it was teething related or not and then the fact that she would start playing and being her happy little self made everyone think it was anything for major concern.

Then Monday night she had a rough time but eventually settled down and slept a bit but she was just really fussy yesterday and very sleepy like… definitely not our happy girl. When we came to clinic I had it in my head to ask for an MRI (our last one had been scheduled for May but with the AML diagnosis the doctor had canceled it) just to rule out a possible shunt issue. The doctor brought it up before I had to ask so I quickly agreed.

She was admitted to her ‘princess suite’ … which is a bit bigger room than our last couple. Sissy brought some things up and then I went for the rest. We did all the fun paperwork, Covid swabs, and tried to get settled in.

They came in the room to do some X-rays of her shunt and she did really well. Later they came and got us for an MRI… again she did really well. I was a bit surprised when they came back for a CT scan.

Our transporter tried to keep us entertained with some jokes:

What does James Bond do before bed?

He goes undercover!

What do you call a pampered cow?

Spoiled milk

What is a cows favorite past time?

going to the mooo-vies

It was a bit of a distraction and I think he had a couple more but I honestly don’t remember them. I was more worried about keeping her covered with a blanket as the hospital has had a big surge in COVID patients and we had to get in the elevators after a couple. They do a good wipe down in between and everyone is wearing their gear but it’s still scary to think about.

When they doctors came in later with a procedure kit I knew something was up. They needed to check the fluid flow from her shunt. This involved sticking a butterfly needle through her scalp into her shunt to try to draw some fluid out.

If the fluid didn’t come out, there was a problem. If the fluid came out to forcefully, there was a problem. After two tries there was no fluid coming out so we knew there was an issue.

The tip of her shunt was barely sitting in the ventricle and the doctor said it was just barely trickling which might be ok for someone else but not for little miss.

It was a CRAZY day to say the least. Once they did the last procedure they left to discuss it with the neurosurgeon and then came back to let me know that she would need surgery ASAP … that was around 6:00 pm.

I cried… couldn’t help it. It was/is a lot and it just overwhelmed me in the moment. I know that everything happens for a reason like us getting delayed for chemo this time which allowed her counts to recover so amazingly which in turn put her in a good position for this emergency surgery… but knowing all of that just didn’t help my heart at that moment. I cried my tears and then got busy.

I started getting things gathered together as our room was still a bit disorganized. The nurse came in with the wipes and a gown so I could get her bathed and changed. I also planned on changing the sheets as they had gotten some blood on them from her procedure but we didn’t have time.

The doctor came up to get her and told me I could carry her down as they were ready. He talked to me on the way down to the OR but I don’t remember a lot of the conversation as I was just in a zone.

By 7:00 she had been handed over to an OR nurse and was being prepped for surgery… I sat in the waiting room and texted our family to let everyone know what was going on. The doctors and nurses called me during the surgery to let me know how things were progressing. She was the only one in the OR so I could easily follow her progress on the screen as well.

When I was in the waiting room I realized I had forgotten my wallet and my mask!!!

I used my shirt to cover my face until a doctor popped out to talk to me and I asked him if he could get me a mask. He did and I was very grateful! I was very upset with myself but things happen and sometimes you just have to give yourself GRACE. Thankfully we had not been near anyone else on the way to the OR.

Around 8:20 she was finishing up and headed to recovery. I could hear her crying when they called me.

After getting some milk and keeping it down we got to go back to our room. She was her happy little self again! It’s amazing to see how quickly she recovers from such traumatizing events!

She got her dressing change when we got back to the room and I changed her outfit as well. Then we settled down and tried to eat some dinner (it was cold by then) and some snacks… she loves her white cheddar Cheetos!!!

The doctors came to check on her and they monitored her through the night and she did AMAZING just as she always does… she is such a little warrior!

We’re not sure what today will hold but we are thankful for another day and we are so BLESSED to have so many people who love us and pray for us!

Thank you all so much!!

#shyannestrong

By Susie @ Kirby's Kabin Blog

Susie is a slightly crazy, homeschooling, square dancing Momma with a houseful of babies (10 to be exact), and a whole lot of Jesus. She gave birth to seven of those babies (and she has the stretch marks ans scars to prove it) and then God chose her to be Momma to three more who she refers to as her 'Unexpected Blessings'. Having a large family means she has heard just about all of the large family jokes... you know like 'You know how that happens, right', or 'Don't you have a TV?'. Many people believe that she must be related to Mother Teresa but she insists she isn't anywhere close to a Saint although she does appreciate as many prayers as she can get sent her way. Even though four of her babies have flown the coop, her life stays really busy. Most days start out early with a cup of her favorite Dandy Morning Coffee and a quick Trim Healthy Mama breakfast before the kids get up and the crazy starts. She looks at every day as an adventure where the unexpected keeps her on her toes. In the rare moment that she finds a little quiet time, you can usually find her snuggled up with a good book, browsing a thrift store, sewing a new outfit, or getting a little 'Pin Happy' with To-Do projects on Pinterest. She is extremely passionate about her family, cooking, being a keeper of the home, and square dancing. She is also on a mission to help others to make healthier changes in their lives, one family at a time. She strives to live by the Proverbs 31 model but she also acknowledges that she is not perfect and is just a sinner saved by grace. Kirby's Kabin Blog began as a way to share her family's journey with family and friends as they've gone through so many life changes. After getting so many questions about parenting, homeschooling, and recipe requests she realized that she could really use her blog as a way to help others out there who may be struggling with their roles as a mother, especially the single mothers who may feel like they are all alone on their journey. This blog has become a journal of sorts and a way for her to help inspire and provide encouragement to others. She enjoys looking back over old posts to see how far they have come and to motivate her when times seem tough. On Kirby's Kabin Blog, she talks about their life's journey through the adoption process, how their faith in God got them through some difficult and challenging times, as well as the many ups and downs they have faced with a large family and special needs (ADHD, ODD, and Down's Syndrome to name a few). Susie also shares the products that they use in their home as well as tips and tricks that she uses to keep her family running as smoothly and efficiently as possible. Do you ever feel like your juggling so many things that you can't think straight? She has often felt the same way but has come up with some simple routines and schedules that help everyone to stay on track and I think they just might help you too! Under the 'Keeper of the Home' tab, you can find various tips, tricks, and hints to get your house up and running on autopilot. That's not been such an easy task for them since they downsized to a 600 ft square cabin but somehow they make it work and she loves sharing some of the helpful tips and tricks that they've learned along the way. One question they get a lot is about how they feed this army. It's not always an easy task and trying to eat healthily can get quite expensive so she is always looking for ways to save money and stick to their grocery budget. Under the 'Kirby's Kitchen' section they have a ton of their favorite recipes like Daddy Can't Wait Casserole, Hoe Cakes (one of the most viewed posts on the blog), freezer cooking, and meal plans along with their family's 'Trim Healthy Mama' plan ideas and successes. If you haven't heard of the 'Trim Healthy Mama' plan you should definitely check it out today! Sometimes eating healthy does mean she spends a little extra on groceries so she finds other areas to cut expenses. One way they have found is with their cleaning supplies and health products. She has always been concerned about the chemicals (Did you know that the average household contains about 62 toxic chemicals?) and toxins that are in many household cleaners so when she found a company where she could buy the majority of the green cleaning products that they use she jumped at the chance to become an Independent Sales Consultant with Norwex. Direct sales is really not her thing as she really is a bit of an introvert so if you look under the tab 'Susie's Chem Free Zone', you will find information about some of the natural products that they use around their house as they try to create a safe haven for their family. If you find that you are interested in the products, feel free to check out her personal web page (susiekirby.norwex.biz) or contact her to see if she can set up a 'virtual party' for you and your friends. Susie has been homeschooling for several years now and although she does not consider herself to be an expert but she has found a variety of products and services that have helped to make their homeschooling journey a unique experience. You can find links to these products under the 'Kirby's Kid's' tab. Susie and her kids have had a ton of fun reading through the Little House on the Prairie series and she has posted some of the unit studies that they have put together for the different books. The family has been trying to incorporate some of the old fashioned morals and values into their everyday lives. As if juggling kids, home, and a home business weren't enough, the family also enjoys square dancing twice a week or more. Mr. Awesome and his dad happen to be the only father/son caller duo in Florida and are pretty well known in these parts. She also manages a couple of other facebook and blog pages for a couple of the local square dance clubs. The 'Kirby's Korner' tab is where they post links to their square dancing activities which is one of the things they do as a family. Susie loves to dress up in her fancy dance outfits and thinks the fluffier the petticoat the better. She also loves to take selfies of her various square dance outfits and share them with others. Did I mention that she met Mr. Awesome through square dancing? You'll have to poke around the blog to see if you can find that story somewhere. If you just want to find a list of the affiliate/referral programs that the family works with you can click on the 'Affiliate Links' tab. These links help to support their blog, their family, and their homeschooling mission at no extra cost to you. If you like to chuckle about the crazy things kids do or the crazy things they do on a daily basis then you really should follow their blog. They also have accounts on Facebook (@kirbyskabinblog and @susieschemfreezone) as well as on Instagram (@kirbyzkorner and @susieschemfreezone). In July of 2020, amidst the COVID-19 pandemic, Susie and Shane welcomed their youngest daughter, Shyanne, into the family. Shyanne has a dual diagnosis of Down Syndrome and Dandy-Walker Malformation w/hydrocephalus. She has gained many followers and supporters from around the world who have joined together to be prayer warriors for this special little girl.

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