One Month In

12/1/24

Willie had a lot of boogers today and that on top of a few other things caused us to have a feeling of overwhelm. Kylie and I just talked through a few things and cried a bit then felt better. We also took some time to call and vent to other people. It is so helpful to have people to talk to about this. Sometimes the gravity of our situation hits us like an ocean wave when you are resting on the sand enjoying the sound of the water Maybe your eyes are closed and then suddenly you are under the water and have to scoot up the beach to get to dry sand. Thankfully we have a lot of support to help in time of need. 

Emmie said our prayer tonight before dinner and she so sweetly prayed for Kylie’s Cousin, Delaney, to get to our house safely. Emmie loves Delaney and was excited to play with her this week. 

Kylie felt bad today because she has not been able to really help or hold Willie for many months now. Due to pregnancy, postpartum, and Wilie being sick, she has not been able to do much for Willie. She loves holding her babies. As Willie got better this week, he crawled up to Kylie’s lap on the couch and just snuggled her. 

12/2

Today was Kylie’s second round of Chemo. Delaney went with her to Chemo. Kylie was drowsy from Benadryl for a bit but not as bad as last time. She also had a better time with the Suzzie pads. She made sure to let them sit out a little before putting them on so they would not hurt her fingers as much. 

This week Kylie only got one (Taxol) of the three drugs she had the first time. Next week she will be getting Taxol again and the following week she will get the same drugs as the first time. Her Chemo is on a 3 week cycle.

Overall it was a good day for her. She went to the store after Chemo with Delaney, and then we all spent time at home. 

12/3

Every day, Emmie wakes up at 6:30 to her alarm and she does crafts in her room until I go and let her know it’s time to get dressed and ready. Then it’s pretty much a rush to get ready and eat breakfast, making sure she is ready to go. On one of the days this week, we forgot to brush her hair and on another, we put a pony in as an easy style. Usually, I try to brush it and maybe braid it and put a bow in it. We also have to get Willie out of bed and take him with us. It’s a fun time in the morning thats for sure. 

After getting ready, we hop in the van and drive to school. Some mornings we do a fun ride looking for things and pretending we see monsters or dinosaurs for fun. As we get to the front of the school, she gets out of her seat and gives us hugs, we pop open the door and then she gets out of the van. She walks into school and doesn’t look back. My heart sinks a little each morning. I love having Emmie hat ome. 

Kylie and I said that if she has cancer we are pulling Emmie from school. In September we had been doing a lot of research into homeschooling. We read books, blogs, and all sorts of things. I was homeschooled many years growing up so I know how fun and good it is if it’s done right. At emmies age learning core things like math and reading only needs to take about half an hour then lots of the day is spent playing and being outside. We were going through the what-ifs, figuring out how we would make homeschool work. We love the benefits of homeschooling for Emmies age. 

• Our family can go on trips whenever we want instead of only on the breaks. 
• The biggest benefit is that we get to be with our girl and watch her grow up. We get to see her reaching learning milestones.
• She is gone from us much less. Right now she is at school more than I work in a typical day.

Thankfully Kylie is not terminal, so we decided to keep Emmie in school for now just to let her have some normalcy. We let her teacher know what was going on. Her teacher is so kind and said she would pray and get her whole church to pray for Kylie. And if we ever need Emmie can hang out after school in the classroom if we are unable to get her at pickup time. She is a wonderful teacher. We like emmies school and love her teachers. It will be good for Emmie to stay in school for now and next year we will re-evaluate home school.

Today Kylie sent me this: Remission: cancellation of debt, charge, or penalty

• Jesus Christ allows for a remission of sins as we repent. Through Him and His atonement, we are able to be made whole as if we never sinned.
• Jesus Christ also allows for the remission of cancer through modern medicine and other holistic approaches. He has inspired doctors and researchers to find ways to allow me to be made whole as if I never had cancer.

I believe this. Jesus Christ is a healer and will guide us to what we need to do to help Kylie heal. 

12/4

Kylie also received a phone call from the geneticist. On the big day when we met with all the doctors, she had her blood drawn to be sent to genetics. Over the phone she learned that she tests positive for the BRCA 1 (Doctors say it “Braca”) gene mutation. The BRCA gene has a very specific role to play in our bodies. Its role is to repair broken DNA. The BRCA 1 & 2 genes are known as tumor suppressors because they stop cells from dividing and getting out of control. When people have this mutation, the gene (we can think of this one like a repair mechanic) doesn’t work correctly. Broken DNA does not get fixed and uncontrolled cell growth is possible. John Hopkins states that women with this gene mutation are 45%-85% chance of developing Breast Cancer in their lifetime. After finding this information out, Kylie sent a message to her family encouraging her siblings and parents to check their genetics to see if they have the BRCA 1 gene mutation. Not to scare them, but so they can know what their body is doing.

The day traversed with us wiping Willies boogers every minute and helping him feel better. Thankfully we had Kylies cousin here to play with the kids and make delicious food. She also took Tommy to the doctor with me so he could get his weight checked. He is looking good, trending up, and has transitioned back to eating more regularly after being weaned off the breast. We are so thankful for the little miracles that happen daily like Kylies Cousin coming for a few days to help us out when God knew that Willie would have boogers and be very needy on top of everything else that we have going on. 

Later that day, Willie was at his own breaking point and was very tired and just not feeling well. He wanted to eat more and more delicious sourdough bread that Kylie’s cousin made us. (I ate the whole loaf in just a few days). I gave him more bread and put butter on it, and then I noticed that the next time he said he wanted more bread, the other bread was still there, but the butter was gone. So I gave him another piece with butter on it and the same thing happened again. We chatted and I told him he needs to eat the bread and can have more butter tomorrow. He decided to get down, taking his bread over to the couch area. He put it on the floor and I asked him to throw it in the trash if he was done. He said, “I want you to”. I was holding Tommy, unable to get the bread pieces off the floor and into the trash so Kylie came over, picked up the pieces, and proceeded to throw them away. Willie screamed, “No, I want Daddy too”, then he started crying and didn’t stop, he also did not take a breath and started to walk, staggering to get the bread out of the trash. 

I knew what was happening so I put Tommy down, ran over, picked Willie up, and ran with him to the kitchen sink. I turned the water on, checked it was cold, and then put Willies head under the water to try and help him take a breath. To startle his body into breathing. My brain knew it was too late, it did not work, his back arched, his mouth opened in a silent scream, his whole body went rigid his lips turned purple. I gently lowered him to the ground. I put one hand on his belly to feel if it rose and fell with breaths and started counting in my brain. 1, 2, 3, 4, 5, 6, 7, 8, 9, 10… keeping track of how long he does not breathe so we can know when to call 911 and start CPR if necessary. As I counted I also rubbed his body and squeezed his legs. And then when I got to 30 seconds he started to take little breaths in. His eyes moved and he took a big breath. He opened his eyes and just lay there. After he became aware of me, I picked him up and we got him some food and continued with our evening, one of us holding him the rest of the night. He was still pale and flushed but went to bed okay and was feeling much better in the morning. He did not have a seizure this time and recovered quickly. 

This is a breath-holding spell. All the research we have done and the many doctors we have talked to have told us it’s okay. Willie is okay, and he is, even the time he had a small seizure. They are not harmful. These spells just happen, their little bodies just can’t take a breath. It’s not their fault and they will grow out of it by the time they are 8 or sooner. Even though we are “used” to this, it’s still hard and especially this week. 

The first time Willie did this, he was around 6 months old and Kylie called me crying telling me she thought he died. 

Last Thanksgiving was Willies all all-time worst day, where he had 4 breath-holding spells in one day. 

Early on in Willies life, we made it my role to take care of Willie when this happens because this is what caused Kylie to have a lot of anxiety during Willies first 2 years of life. I hate it. Watching his body do this is very unsettling and scary. Even though we know it’s going to be okay and we know what’s happening, it is not fun. Thankfully his episodes are getting farther and farther apart. This is the first time this has happened since the Fourth of July week this year. 

The next day I went to the store and got Willie some iron supplements. Anemia has been shown to lead to this. We also know that he has been sick and teething so that causes his body to be off balance especially because he doesn’t eat as well. We also had him drink orange juice. The body needs vitamin C to absorb iron. 

Thankfully he is okay and always has been. 

After the kids were in bed, the young women from the ward came over and gave us a real Christmas tree. This is a bucket list item for us haha. It smells so good. We are very grateful to them for serving us.

12/5-6/24

At dinner, Emmie was asking us all about what would happen during Kylie’s Surgery. At one point she made scissor motions and said “So they just chop it off”. We were laughing at her hand motions and faces. To her, it’s as simple as getting some scissors and cutting the breast off. She is so innocent and sweet and had so many good questions. We are happy to answer them. 

I took Emmie and Willie to a Christmas parade today. They were so excited to get candy and it was nice to get out.

12/7

Even though Kylie has cancer, we still see miracles and tender mercies often. One that I’ve been thinking about is the community we have because of being members of The Church of Jesus Christ of Latter-Day Saints. I imagine to myself what would have happened if we moved here to SC and Kylie got Breast Cancer and we were not members. Our main support group and friends have come from Church. They have rallied around us. It’s like Kylie is an Olympic athlete. She’s going for the gold medal. What sport would she do? Olympic Figure Skating or maybe Olympic Artistic Swimming. Everyone is cheering her on. We can’t physically do anything for Kylie’s body to help her land her amazing spins on the ice, but we can cheer her on, celebrate with her, and pep her up. 

Anyways, it’s a miracle that we have a community and that we are members of this Church. Especially because of the great understanding the doctrine gives of what we are here on earth for. 

Another miracle is Tommy. He’s a sweet angel baby. There are many miracles about him and the one I want to highlight is the fact that he was born when he was. Now that Kylie’s breast milk is starting to dry up, her left breast is returning to normal skin color. It’s not inflamed or red as much. 

These are the reasons she went to the doctor to get it checked in the first place. Tommy came at the perfect time to cause her milk to come and the breast to become full and then we could see with our eyes that something was wrong. Before this, we never really physically checked her breasts for irregularities. Although I remember before we had Emmie one of the nurses told us to check often. They made a joke saying I would know how her breasts feel more than her. lol. We didn’t catch anything, but Tommy’s birth did. This cancer could have been in Kylie for years and we just didn’t know it. Tommy is a miracle. Who knows how far it would have progressed without him coming along?

Look for the miracles in your life, we know you will find some. 

This has been a pretty good week. We have felt very supported and loved. 

#kyliebeatscancer