Chemo Round 2: Day 13

Last night was another one of those sleeping in the chair nights as she didn’t want to be put down. She’s been a little fussy … maybe because she’s working on getting two teeth to come through or maybe because her counts have been so low.

When the nurses came in and said her ANC was 160 I was completely shocked. I didn’t expect it to jump that fast. We did a little happy dance and Shyanne laughed and giggled.

It might not be a real recovery yet but if it continues to improve then we will be on our way home soon but I’m trying not to get too excited as I know a lot of things can happen.

We’re still waiting on the doctors to round but Shyanne’s had a good morning so far. She was very interested in eating breakfast and ate about half of the oatmeal I had made for her. She also had some dry cereal and yogurt snacks.

After breakfast she took a very short nap before waking up and wanting to nurse. Child Life came by and she got her a cold teether … she left a couple more in the refrigerator for her too.

Shyanne got weighed and she was 7.76 kg. She’s down from 7.85 kg at admission but she’s not lost as much as she did the last time we were here. Go Shyanne!!

At 10:30 I got her a snack ready and I attempted to give her a little bit of prunes but she promptly threw it up. I’m not sure if she might have gagged herself with the food, the teether, or her fingers but she hasn’t done it anymore. She’s been snacking on dry cereal and cheddar puffs while watching some animals on TV.

She’ll either play on her play mat or watch some ‘Signing Times’ when she finishes her snack… I’m not sure which yet as I’ll let her decide when she’s ready.

When the doctors came by the checked her out and said everything looks good. They did mention that we could still see a dip in her counts and that is normal. There is no way to predict how long they will stay low or how long before they return to normal. She’ll have labs done daily for now to see how she is doing.

I also asked again about the four copies of chromosome 21 (Down Syndrome has 3 copies) that have been seen in some of her cells. I don’t know that anyone has any answers as to why they are there or how they might affect her recovery but I just felt like I should ask again.

We also need to keep a check on her mouth to see if she develops any sores… we do her mouth swabs 2-3 times a day. I also try to get her something cold to drink/eat every so often too as that has been shown to help sometimes.

We also need to keep an eye on her bottom for any sores. The chemo can cause sores from her mouth or anywhere along her digestion track. I try to change her every 2-3 hours and I wipe her down and use diaper cream with every change.

During chemo and for 48 hours after the last dose she is considered ‘toxic’ and anyone changing diapers needs to be extra careful. They also recommend for everyone to wear special gloves during diaper changes or when cleaning up any vomit.

If she develops any sores they will be extremely painful, may bleed, and may take a long time to heal due to her counts being so low. We are trying to prevent them as much as we can.

Child Life also came by again with a crib mirror for Shyanne to use while we are here. She was having fun making faces until she remembered another toy she had in her bed.

Daddy and I had recently been talking about getting a mirror for her play area. I’ve already added one of these to our wishlist and will try to get one soon so she has one at home.

The social worker also came by and I finished up that paperwork from a couple of weeks ago. She also dropped off a couple of gift cards that had been donated. One was for Starbucks (they have one downstairs) and the other was for Publix. We’ll definitely be able to put these to great use although I’ve never actually been to Starbucks.

That reminds me that I did install the apps for the restaurants downstairs and I gave one a try the other day. It went pretty smoothly and I didn’t have a long wait when I got down there. This coming from someone who hates using the self-checkouts.

Shyanne played on her mat for a while today. She is getting so strong and she just amazes me everyday with her determination.

This afternoon I got a call from Shyanne’s insurance letting me know they had approved her for stem cell therapy/bone marrow transplant, if needed. They have a wide range of services and I couldn’t quite comprehend everything she was saying. I guess I was in a bit of shock even though I knew we had started the process. It’s not a definite thing but this call made it seem so.

I just keep reminding myself to take it one day at a time though… breathe in, breathe out. She had a lot of questions and I think I do too now so I might see if I can talk to someone on the transplant team tomorrow.

She also wished Shyanne a happy birthday because it’s only two weeks away. I about started crying because it feels like she shouldn’t be a year old yet. We haven’t even really had a chance to enjoy her being a baby yet… I’m cherishing every minute with her right now because she is growing and learning so fast.

After the call we helped Daddy make a birthday cake for Sissy (her birthday is tomorrow). She brought us a piece this evening and some brownies and pizza too. She’ll be leaving us soon and we will miss her. She’s been such a big help with the kids at home and that’s helped me to be able to concentrate on Shyanne here.

We also FaceTimed when they sang Happy Birthday and Shyanne loved seeing everyone!

She’s actually sleeping in her bed right now so I’m going to try to get a little rest here.

We thank you all for your continued prayers!

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 ( 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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