Stem Cell Transplant Information
We hit the two months mark! WHAT. Feels like just yesterday I was in the ER with a sore throat. HAHAHA. Syke. Try a sore throat AND Leukemia. What a treat. The past few days have consisted of meeting with my transplant Dr. and trying to make a decision between using Kierstin (100% match) and Brayden (50% match) mixed with fetus cord stem cells. I am very blessed with the fact that I have siblings that are matches and have this difficult decision to make. Some individuals don’t have any siblings/sibling matches and just use cord stem cells. The Dr. went through the five main risks of transplant and gave us a percentage of the risk happening if we used Kier vs. Braydo. I detailed the five major risks below but left out the percentages of using Kier vs. Braydo because to be honest I don’t remember every percentage thrown at me during this meeting and I didn’t take notes – whoops. For the most part the percentages of using a 100% match vs. a 50% match and cord blood were similar. So this decision is almost impossible to make. Based on my understanding (which is limited), the 100% match has a slightly greater risk for something to happen long-term related to chronic graph vs. host disease. Using a 50% match with cord stem cells has a greater risk up front for me to catch an infection because it will take longer to engraft… leaving me with no immune system longer than if I used the 100% match. Overall, both options have five main risks detailed below:
- The new stem cells don’t engraft.
- This means that once they hit me with the chemo/radiation and deplete MY bone marrow, there is a risk that the new stem cells they put inside of me won’t take and start to grow. This would leave me with no bone marrow (i.e. no immune system). YIKES. Luckily, because I am using a sibling donor in both situations there is minimal risk here.
- WHAT THE. He said this and my eyes bugged out of my head. That would totally suck and be disappointing on all fronts hahah but like Aaron reminded me… they also told me the month chemo held a risk of killing me and I’m home and doing fantastic respectively. SO we are just going to pretend this isn’t a risk – get those vibes out of here and just note they’re covering their butt’s. This is overall a low risk as well as I’m young and healthy other than having Leukemia in the PAST. Super exciting to be able to say that as a past tense phrase. But also kind of feels like a dream. Saying I HAD Leukemia… like what. Life is nuts.
- Leukemia still comes back.
- BUMMER. The idea of the transplant is that if my Leukemia were to ever come back my new stem cells, that will develop into my new immune system, would identify my Leukemia cells as foreign and kill them before they progressed into anything serious. Obviously this was a bummer to hear as a risk but my risk of it coming back after transplant is A LOT lower than if we did nothing. Without transplant the risk of my Leukemia coming back is 70%… so as hard as it’s going to be transplant it is.
- Acute and/or chronic graft vs. host disease.
- Acute graft vs. host disease occurs within the first few months after transplant and can include attacking skin (via a rash), digestive track and liver issues. Chronic graft vs. host disease develops later and can include: joint or muscle pain, shortness of breath, persistent cough, dry eyes, skin changes, rash, jaundice, dry mouth, mouth sores, diarrhea, vomiting and nausea. Overwhelmed? Lol same. I 100% googled this and pulled the above explanation from the Mayo Clinic website because I couldn’t remember all of the different things that could go wrong here hahah. Prayers up that none of this happens and if it does, I choose dry eyes. Seems doable. Eye drops are a thing for a reason. Is that how this works? I get to choose my side effects? PRAYERS UP.
- We all already knew this… shout out to those 31 baby Kayla eggs that are waiting to become babies one day. AGAIN, another blessing that I was able to do the egg retrieval before this entire process started. I guess the month chemo regimen had an 85% chance of making me infertile (i.e. my ovaries are going to stop making eggs). With transplant this jumps to 100% (so they say). I will still be able to carry future babies but by ovaries just won’t work… which I still get a period so I feel like I got the short end of the stick with this if you know what I’m saying.
Conditioning Chemotherapy and Radiation
I was also told that I will have to do a “conditioning chemotherapy” and radiation regimen the first week I’m in the hospital to wipe my current bone marrow entirely. The Dr. said this week is pretty much bringing you as close to death as possible without killing you. HAHAHAH. I mean I’m not anyone’s boss but like maybe we change our selling points here? Let’s word it a little nicer next time. Like “Kayla this might be a bit harder than your chemo month in August. But you’re so great and so strong and you’re going to kill it, I wouldn’t worry.” Great – so much nicer, throw some affirmations in there and still get the point across. Maybe I should quit my day job and become someone that relays bad news to people. Nah, I’d end up sitting with the family and crying with them for the next four hours and lose my job day 1.
Anyways, I’ve been busy all week with Dr. appointments preparing for transplant. They’re checking my heart, lungs, mental health, etc. to ensure everything is in tip top shape to blast me with this chemo and radiation regimen. I was told I will have to have a feeding tube placed after radiation because I’ll be receiving the most difficult regimen they give (because I’m so healthy – seems counter intuitive I know) and I will have so many mouth sores lining my mouth, throat and stomach lining I won’t be able to eat. HAHAH. You think I’m kidding. I cried. Obviously. Who wants a feeding tube? Not me. No thank you. But home girl doesn’t have a choice, so stay tuned for a feeding tube selfie. It’s going to be great. I will be trading in my puffy cheeks for a feeding tube. YAY. Oh but don’t you worry – my nutritionist confirmed, the feeding tube goes through my nose not a surgery to place a tube in my throat. Oh good. I guess I should be thankful for this but I still hate it. I totally hate it.
Hospital Check-In Date
If everything goes to plan they are planning to have me check into the hospital on Friday, September 25th for transplant. I’ll start chemo/radiation those upcoming seven days and then get my cells October 2nd. This will be my second birthday and I was hoping for October 3rd (Mean Girls reference) but I guess I don’t get to make my own schedule. Bummer. So everyone look for a birthday invite from me for October 2, 2021 – my stem cells will be turning one. I’ll be there for 4-5 weeks waiting for my new cells to engraft and grow. Once I’m discharged I’ll have to have someone with me 24/7 as my “caregiver” for two months. Luckily, I live with the best caregiver in all the land (A-Aron shout out) and Kelsey (one of my best friends dating as far back as 3rd grade) is going to step in when Aaron has things come up he needs to leave the apartment for. Odds we all kill each other over the course of these two months…? Not sure but having someone with me every second of every day might be the death of me before this Leukemia thing. KIDDING. Sort of.
God’s Got Me
I’m sure you’re all reading this and are like, “No way is Kayla okay. She has to be freaking the eff out right now.” Well you’re not wrong. HAHAHA. Kidding. But yes, I’m totally overwhelmed but am just continually reminding myself God’s got me. He got me through the month of chemo which was supposed to be rigorous and terrible and I was totally fine. And just like he did for my month of chemo he will get me through this process as well.
“Accept each day exactly as it comes to you. By that, I mean not only the circumstances of your day but also the condition of your body. Your assignment is to trust me absolutely, resting in my sovereignty and faithfulness. On some days, your circumstances and your physical condition feel out of balance: The demands on you seem far greater than your strength. Days like that present a choice between two alternatives – giving up or relying on Me. Even if you wrongly choose the first alternative, I will not reject you. You can turn to Me at any point, and I will help you crawl out of the mire of discouragement. I will infuse My strength into you moment by moment, giving you all that you need for this day. Trust Me by relying on My empowering presence.”
Psalm 42:5; 2 – Corinthians 13:4 – Jeremiah 31:25
If you have something physically challenging with your health going on I hope this short blimp above helps you. If physical demands placed on your body seem far greater than your physical strength let go and give to God. From a birth defect to a cancer diagnosis to a debilitating accident – whatever it may be in your life – God will give you strength that you didn’t know you had to get through it. Going into transplant, it’s very reassuring to note that a) I won’t be alone, God will be with me the whole time b) On my hardest days to come he will physically give me strength. Because let’s face it. Being in such rough shape you need a feeding tube… not going to be a cake walk.
HERE’S YOUR SIGN: GO TO THE GYM
Lastly, if you’re healthy and capable get your butt up and go to the gym. I miss it SO MUCH. I miss my body being able to be “normal.” I miss Orange Theory. I miss 24 Hour Fitness. I am so weak from just my month of chemo and Predisone (the steroid I was on which I learned eats your muscles AND gives you fat cheeks) a 2 mile walk kicked my booty and I strained a calf muscle HAHAHAH. You think I’m kidding. I wish I was. So for me, get your butt up and GO TO THE GYM. Don’t take your health for granted and take care of yourself. I don’t care if you hate the gym. Your health is far more important than the one hour a day you spend hating your life at the gym. It will be so worth it and just remember you being healthy enough to go to the gym is a privilege that not everyone has… SO GO TO THE GYM AND SEND ME A GYM SELFIE SO I CAN LIVE THROUGH YOU.