Day 75 to 84 – Week 1 of Stem Cell Transplant

Day 75 – Friday, September 25, 2020

This morning I woke up at 6 am and triple checked I had all of my bags ready to go. I ended up with a massive suitcase, a carry-on suitcase and a backpack. I know you’re all like WHAT. That’s too much. But to be quite honest with you, I am very proud I was able to pack within those three bags. I think it’s safe to say I’m growing into an adult for this very reason. LOL.

Aaron and I met my Dad at the hospital for my surgery at 7 am. The surgery was to remove my Peripherally Inserted Central Catheter (PICC) line out of my right arm and insert my new Central Venous Catheter (CVC) into the right side of my chest. See pics below.

This CVC, which I was having surgically placed this morning, was a way bigger gig than having the PICC line placed. They call it a surgery/procedure and they drug you up and wheel you back into a room where you don’t really know what’s going on. Waking up – it hurt. This CVC thing is more permanently placed under my skin and so there is no getting this sucker out without another procedure. GREAT. But it’s nice to have my arms back – they were getting a little weak. Need to step up my push up game now that I don’t have PICC lines harshing my mellow.

Later in the day they pumped me with my first “conditioning” chemo, don’t ask me the name of it. I couldn’t tell you. To be honest these names of chemo’s sound like the inventor of said chemo just threw together random letters and called it a day. Nothing to report here. I was feeling as good as a could be.

Day 76 – Saturday, September 26, 2020

Very uneventful except I was pumped full of two more conditioning chemotherapy’s this day. Yippee. I was given tons of anti nausea pills before today’s adventure. Nothing crazy to report here. Still feeling decent and ready to rock this thing.

Day 77 – Sunday, September 27, 2020

And it hits me. Nausea like I’ve been praying to avoid. I woke up feeling like I spent a Thursday night at Bondi in Fort Collins downing their $3 Long Island Ice Teas all night living my very best 21 year old life. But unfortunately, the nausea I am feeling this morning was brought to me by poison being pumped through my veins rather than a cray cray night up in Fort Collins reliving the glory days. By the time the afternoon hit I was starting to feel a little better as the 287226282 nausea meds they poured into me started working.

Day 79 – Tuesday, September 29, 2020 to Day 81 – Thursday, October 1, 2020

These few days I underwent radiation treatment, twice a day. Once at 8 am and then again at 3 pm everyday. This was exhausting and I spent most of my days sleeping in a drowsy, nauseous state. I had numerous meltdowns during these days. It’s hard to feel like you can do something when you sincerely feel like absolute crap. The lack of feeling good was also quite opposite of what I felt during my month of chemo and so that also added to my freak-outs to say the least. I felt as though I wasn’t strong enough anymore. Turns out, that high dose steroid I was on during my month of chemo… that’s the golden ticket to keeping me feeling so good. Without the puffy cheeks… you struggle a little more physically. For this stem cell transplant they tend to keep the high dose steroids out of the mix – hence me feeling pretty crummy and exhausted. I started to feel more anxious as the week went on because they can’t tell me a day I get to actually go home. It all depends on the engrafting that occurs within my body which is out of my control. Being a type A person, and not having an end date to my hospital stay has been one of the hardest things for me. They’re giving me a range of 2 to 5 weeks. Which is a HUGE difference. SO I just have to stay put, know God’s timing is always perfect and just roll with the punches – which is so hard for me to do.

Day 82 – Friday, October 2, 2020

Today is cells day! Happy second birthday to me! My nurses helped Aaron decorate my room this morning which helped bring some much needed light to the dull hospital room. The cutest humans in the world. I appreciate the nurses and Aaron so much for making it feel like a “birthday.” The nurses even brought me a Bundt cake (delicious). It was overall very uneventful which is not what people initially expect. I lay in bed, am hooked up to a million different heart rate monitors and am dosed up with loads of Benadryl and Tylenol (I know the one and ONLY time they give me Tylenol). Both cords were delivered by a guy with a cooler just like in Grey’s Anatomy… I’m not kidding.

They put the umbilical cord stem cells into my body first which took thirty minutes and looked just like a bag a blood. My vitals were taken every fifteen minutes to ensure I didn’t have a reaction. Then Braydo’s stem cells were put in. His were more of a tannish color and we followed the same procedures. Vitals every fifteen minutes. It was explained to me the idea of using some of Braydo’s stem cells is so that they will engraft quicker than the cord blood BUT they won’t last as long as the cord blood. So when Braydo’s cells start to die off that’s when the cord takes over and starts engrafting. This gives me protection against infection and gets me out of the hospital theoretically sooner than if we just used cord blood from an umbilical cord.

Day 83 – Saturday, October 3, 2020 to Day 84 – Sunday, October 4, 2020

So the waiting game starts. I’ve been nothing but emotional the past few days. Starting on Saturday until I leave the hospital I do a lot of waiting around for my cells to engraft and dealing with the side effects of the chemo and radiation. So far a lot of nausea has been my biggest issue. The Dr.’s explained that mouth sores (open cuts lining my mouth, throat and stomach) will also be an issue coming up – which is why on Monday, October 5, 2020 I’m getting the feeding tube placed. This is so my body can continue to get nutrition even though it will be painful for me to eat/drink at that time. Once my counts come back up the wounds in the mouth tend to heal and I will get the feeding tube out at that time. It’s going to be a rough go but I just keep reminding myself I am so close to being finished with everything. The end is in sight. I can’t give up. God’s got me and has blessed me with the strength and support system to get through this.

XOXO

Kayla