White Sponge Soap

We started the week at church. At Church, the primary kids did a primary program. They get up before the congregation and sing songs they have been practicing. This year has been all about The Book of Mormon so they mostly sang songs relating to the stories there. It was so good! Kylie directed and created the whole primary program. She started creating it before she was diagnosed with Cancer and did not want to stop, even when offered. It gave her something else to focus on. She is very good at directing, planning, and organizing events. 

At Church, the members passed around a blanket someone had quilted. They passed it around to all the members so they could each individually tie a knot in the strings between each seam and in the middle of the squares. As they tied a knot they each said a little prayer for Kylie. This and other little things often bring me to tears at church. We are grateful for the love and support. Kylie used this blanket this week at Chemo. 

We felt a little more in the groove of our new life, our new normal. We have patterns and schedules that happen, routines where we know exactly what is going on. After church, we made a gingerbread house with the kids. They enjoyed it and ate the frosting/candy as we went. 

Later that night we took some time to deliver some candy canes to a house in our neighborhood that Emmie and Willie picked as the best decorated. Emmie and Willie ran up to the door, rang the doorbell, and ran away. I picked Willie up so we could run a little faster. We hopped in the car and drove away. We are trying to do little things like this throughout the Christmas season to help our kiddos understand and learn the value of giving. 

The next day, one of Kylie’s longtime best friends got here to stay with us for the week. Morgan is a mom of 2 with one on the way. It was a big sacrifice for her to come stay with us and she did a lot while she was here. Every night as I put Tommy to bed, I say some prayers because it is quiet and peaceful and somehow I end up kneeling next to the bassinet while I rock it. This week I expressed so much gratitude for the service Morgan was giving us. 

The first day she was here, after flying on a plane and having jetlag, she woke up and started doing dishes. I came home from taking Emmie to school and there she was in the Kitchen. Later Kylie asked if she wanted to do something like a movie or something else and Morgan said, I would like that but I’m here to be productive and help you guys. At night, she would help me put the kids to bed so Kylie could hold Tommy for his last nap of the day. Then she would ask me, “What else do you have to do Steve?” I told her things and she did them. All the little tiny things she was doing allowed me to breathe, to relax a little. When I married Kylie, I also married into her friend group. Her friends continue to amaze me the longer I know them. 

The same is true for anyone who has been here to serve and help. The load each person has lifted has been immense. Later in the week, one of our friends from church came over and literally cleaned the bathrooms, vacuumed, and did laundry.  Our neighbor brought over dinner. It’s as if the Savior comes to our house and does all these things himself. The way all of these people are emulating Him is very inspiring. They are Angels.

I am still able to do these things, even Kylie is at times, and that’s okay. What has been happening though, as we have let people help us, is we have been able to free up that mental load, and physical energy for things that matter. Maddie, who came over to clean the bathroom, said it very well when I thanked her the next day. She said something like this…Anyone can take care of the house, you guys are the best ones to spend time with your kids. 

It’s these little things that sometimes I’m embarrassed to have people do and I am learning to not be embarrassed and to gladly accept help and be humble about it. Anyone who knows me knows that I like to go, go, go, and not stop doing tasks until the list is done. So now instead of this “clean the bathrooms” whisper sitting on a shelf in the back corner of my brain, it’s an empty shelf for now. Instead of the incessant whisper of “I’ve got to cook dinner”, it can now just remind me at 4 pm to pop a premade meal in the oven, and boom, dinner is made. These little things being done free up my brain to focus on other things, the most important of which are helping Kylie and my kids navigate this new ocean we are in. 

Let’s hope after this, that I can make enough money to pay for a maid and a cook haha. That would be the dream, wouldn’t it? 

On Saturday we had a ward Christmas party at church. Willie said he did not want to sit with Santa because he did not have his hat on haha.

People came up to me and asked how I was doing. I’m trying to give a truly honest answer when I am asked this these days. I think in our culture we have a predetermined answer that is almost expected to be given. It sometimes shocks people if you say something other than “I’m doing good, I’m fine, etc.” I said “I’m a little depressed today”. I received a hug in response and that was good. I’m finding that as I tell people how I feel, they respond validating my feelings. It feels good. I bet we could all offer help much easier if we all truly said how we feel. And 50% of the time we probably will say “I’m good, I’m doing awesome!” and that’s okay. 50% of the time we would probably say “I’m not doing too good, today was hard.” And that’s okay.

CHEMO DAY

Kylie’s chemo day this week went pretty smoothly. She had the same treatment as last week. The doctor is always so positive and says we have nothing to worry about, she is going to beat this. 

This week, she started doing injections after chemo. For three days after Chemo, she has to go to the cancer center near our house and get injected with stuff to help build her white blood cells back up. Before she does Chemo each time she has to do a blood draw so they can check her white blood count. If it is too low, they won’t do the chemo that day. This week it was only 20 points higher than the minimum. Because it is week three, the doctors expected this and this is why she is starting injections to help build the white blood cells back up. The injections are quick, about 15 minutes, then waiting for 15 minutes and the center is near our house. 

After Chemo she had a wig appointment. She is so cute. I got a little teary-eyed because it brought home the reality of what she is going through. I love the wigs and am so grateful for wigs. 

Someone from genetics came and talked with Kylie while she was in chemo, explaining the BTCA1 gene mutation to her. They recommended getting a hysterectomy after all of these procedures are complete. Because the risk for ovarian cancer is very high if you have these gene mutations. It’s something like 15-40% if not higher. Kylie decided she would get a hysterectomy. We already were not planning to have any more kids after the cancer diagnosis and now the choice is forced upon us. Sadly, we don’t get to choose. I guess we could choose but the risk of cancer is high and we don’t want to take that risk again. I am just grateful we got to have our 3 babies. Right now we don’t feel too many big emotions with this, but I know as the actual surgery comes upon us, if we still decide for Kylie to get it, we will probably feel big emotions later. 

HAIR LOSS

Something that we did not anticipate was how many people would have advice. The people who have either had cancer or know someone who has had cancer are a lot more than we thought. 

You can go down Reddit threads and get lost in the stuff people are saying works, while others say things don’t work. Kylie and I love research, for most things. We want to know if something will work. Of course, a big part of faith is believing in things we cannot see but that are true. What we have been doing when people give us suggestions, is to think about it, do our research, and then take those things to God and ask him to direct us with what Kylie needs to do. Keep the suggestions coming, we welcome any and all suggestions. 

There is a lot out there about natural healing and overcoming cancer without Chemo. I believe Jesus Christ can heal whomever he wants and they do not need chemo. Take the lepers, for instance, they were outcasts and he healed them. He can do the same today if it is his will for that particular person. I also believe that many natural remedies do help with certain things and can be beneficial to us all, not just to cancer patients. I have oils and use onions and garlic for certain things. I grew up reading this yellow book about natural healing by my mom. 

I also believe in the power of modern medicine. That God inspired and still does inspire people today to create and combine these plants, to produce the drugs that chemo uses which kill the cancer cells. We know that each person’s body is different so some people will respond differently to the drugs. I think there is a good balance of using modern medicine and natural remedies to help heal our bodies. Thus, we will take all suggestions and take our time to think about them. We are just grateful you are thinking of us enough to suggest things. 

Another thing that we remember but then forget, because it has not happened yet, it hair loss. Emmie usually takes a shower in our shower. This week after she was out she told me, “I saw some hair on the white sponge soap, it looked pink”. (She has never seen a bar soap before Kylie got sick and needed one to clean the port area so she called it a sponge soap haha). She is so nervous about her mom going bald. We all are. She is so tender and small, keep her little heart in your prayers. 

Emmie was not wrong, I went to look in the shower later and found some hair. It’s pink. It’s sad. 

This week, Jen wanted to do some decorating in our house. Morgan and our friend Jen decorated our mantle this week and made a beautiful wreath for the front door. If you’ve ever seen a Netflix Christmas movie or a Hallmark movie, these look like they came off the set of a movie. 

To close out the week we went to a nighttime Christmas parade. It was nice to get out. Usually, at Christmas time we pack our weekends with events and fun activities. This has not happened this year so it was good to go out as a family when Kylie was feeling well enough. We had never seen a parade at night, it was pretty cool. We got to ride a Christmas train. Willie keeps talking about it, he loved it. 

Then we had the Church Christmas party, once again decorated like a Hallmark movie. Emmie sat with Santa and told him she wanted a stuffed animal. Que the astonished emoji haha. She has a lot already lol. Santa asked Willie if he wanted to sit on his lap, and he said no. Later as we drove home we asked him why he didn’t want to. He said “Santa didn’t have his hat on” hahaha. 

Keep spreading the love and prayers. Thank you for sharing our story, reading, commenting, and serving us. Whether that’s in food, thoughts, time, financial donations, smiles, or phone calls, we love and need it. This whole experience is changing us for the better and in large part due to all of you. Thank you for all of your love and service and hope.

#kyliebeatscancer