We are so grateful for all of the help we are receiving from everyone, especially on weeks like this week when I have a lot of work. I have 14 projects that I’m working on all at once and they rotate so I’ve been largely unavailable for most of the day Monday through Thursday. Thankfully, we had our long-time friends Emily and Kelsey staying with us. We know them from college and a summer camp we helped Emily start. It’s called Outdoors For Youth. If you have a youth ages 13 to 18 get in contact with Kylie and she can help get your youth to camp in the summer!
On Tuesday Kelsey went with Kylie to her chemo treatment.
Let’s dive into what a typical chemo day looks like. Kylie leaves with whoever goes with her about 45 minutes before she has to be at her appointment because that’s how long it takes to get to the doctor’s office. Once she gets there she’ll check in, and then go into the waiting area and wait to be called back to get her blood drawn. They put a needle in her arm, take out a tube or more of blood to run tests, and get her numbers.
After getting her blood drawn she has an office visit with the nurse to go over her neutrophils, platelets, hemoglobin, and even her potassium sometimes.
This week she had to have some schedule changes because her neutrophils were too low to do this week’s original scheduled treatment and next week’s treatments. They are at 0.8. Neutrophils are the white blood cell creators and when they are low, we can’t fight off infection. Because Kylie‘s neutrophils were low this week. The doctor decided to have her skip her scheduled treatment and skip forward to the next week because the next week is when she gets injections. They essentially erased a week of her schedule and moved the schedule up. This week she had her three drugs And she got her three injections.
These injections are to help raise the neutrophils in her blood.
After Kylie meets with the nurses on a chemo day, she then goes to the infusion room. This is a room with about 45 blue chairs. It has a center oval-shaped office area for the nurses to do their other work. Everyone sits down in these blue recliner-type chairs. If you have ever given blood or donated plasma, it’s very much like those types of chairs.
The nurse will then come over and get Kylie hooked up to the IV machine, those rolling machines that hold IVs on them, and other chemicals. She gets hooked up to one of those. Then she does her port procedure. It’s a sterile procedure every single time so the nurse wears gloves, a gown, and a mask and Kylie also has to wear a mask. The nurse will then get a needle that is connected to a tube connected to the drip line. The nurse grabs this needle, cleans the port area, and then pokes the needle into the port once it’s reached its depth it clicks into place and stays there.
After the port is in place, the nurse will then flush some blood out with a little syringe. She pulls the needle pumper syringe part back, pulls some blood out, and then pushes it back in to make sure that everything is correct in the flow of blood and that there are no blocks. Then they start the pre-drugs to help reduce allergic reactions to the chemo drugs. After that, she then gets the drugs for the day. It takes 2 1/2 hours to go through all of them. They’re just hooked up like an IV to the drip line and they slowly drip in. One drug day where she only gets the Taxol usually takes 1.5 hours.
Through the chemotherapy process, the only time she feels weird in her body is during the Benadryl section. It just makes her feel like her words are slowing. It’s harder to swallow, dizzy, and like she needs to close her eyes for 15 minutes. The rest of the drug infusion process is like she’s just having an IV it’s not until when she gets home the next day and the following three or four days that she feels the impact of the chemotherapy drugs with the tiredness, the fatigue, the body aches and needing to sleep. Sometimes diarrhea, sometimes constipation, sometimes other side effects.
After all the drugs go through, Kylie drives home from the 45 minutes. Usually, Kylie takes a nap after chemo and has an earlier bedtime that night and then the next day she usually takes another nap. By Friday she’s feeling a little bit OK. Saturday a little bit better. Sunday a little better, Monday almost normal.
This week, Kylie did notice that she was getting out of breath more which means her hemoglobin levels are probably dropping. We’re hoping and praying that next week everything will look good so she can continue treatment. Since they move the schedule up next week, she’ll be getting the drug that is harder for the body from other people that we’ve talked to. The nurses call at the RED DEVIL because it’s red and it just wipes you out. The people we’ve talked to have said that to recover from it they usually are sleeping 15 hours a day for the following week. Thankfully with this drug, she only has to do it four times every three weeks for the next 12 weeks so that’ll give her body more time to recover in between each chemo instead of doing it once a week that would be nice.
This week while I was working, Emily took the car to get the tires rotated and the oil change done. The Senior Sister missionaries came over and helped us clean a little bit. And Kelsey baked a lot of delicious yummy food.
Kelsey and Emily helped us clean and do all the little things I would usually do. Most importantly they spent a lot of precious time with our kids. This is the most important reason people come to help us out so that our kids can be watched over and played with. Whether that’s Kylie and I being able to spend more time with them because we don’t have to do house stuff or if Kylie is sleeping and I’m working someone is able to take care of the kids.
Seeing people take care of my kids and love them makes me feel a lot of love for those people. We are so grateful for everyone who’s come and stayed with us and helped us with our kids and helped us live life and get through this difficult time it means a lot. It lifts our spirits to have people come into our home and visit with us.
Kylie had an injection on Wednesday, Thursday, and Friday to boost her neutrophils. I didn’t even know she was gone or having appointments because I was in my closet working. If you’ve ever watched Harry Potter, you know how he sleeps under the stairs. I have my office in our closet, which is a good size closet. It’s not super small, but I don’t have dust falling on me. We call it my Harry Potter closet. I keep my office in there so the other room can be open for people coming to stay. My dream is to one day have an office shed in the back with power running to it.
Kylie also had a follow-up ultrasound on her breast this week. She went there hoping for a good and she received good news from the ultrasound. The ultrasound tech said that the tumor looked good. She was relieved at how good it looked then she had the radiologist triple-check and the radiologist said wow this looks amazing. When Kylie first had an ultrasound on her breast, the tumor was a little over 3 cm now the tumor is less than a centimeter at about 7 mm! We are very grateful. God has blessed us. Thank you so much for all your prayers and fasting and if you want to watch a video of Kylie telling the news to her family click on this link.
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Valentine’s packages!!
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On top of this good news, we have been receiving package after package, after package with cute fun Valentine’s cards and activities for the kids. We even got some planting material to plant little flowers inside and then transplant them outside. All of Kylie‘s extended family took the time to put something together to send to us. It is so fun.
On Saturday, Kylie and I went to the PET scan together. She got there checked in and then sat in this little room to get ready for the scan. First, the radiologist had to check her blood sugar to make sure it wasn’t too high or too low before the scan and then he injected Kylie with a radioactive material that highlights the areas where the body uses a lot of glucose.
This radioactive material is minimally radioactive so she has social distance from people for the rest of the day. Good thing we got to practice with this in 2020.
She had to sit in this little room and they had a TV. It was showing some black-and-white films about cowboys. She sat in there for 45 minutes to let the radioactive material go throughout her body after that she went to the scanning machine. The radiologist was so nice and took a few extra steps to make the radioactive material less radioactive in a way that affects other people.
Then we went home, and the next day, we went to church and spent time at home relaxing with the family.
We are so grateful the Ultrasound gave us positive results, the treatment is working, your prayers and hope, and faith are causing miracles.
#kyliebeatscancer