11/14/24
This morning we woke up at 6 am and got Emmie ready for school and Willie ready to go to our friend’s house for the day. I told our friend that Willie just learned to use the potty and they were watching him at risk of accidents. They took him without a second thought. (Willie told me later that day that they have Hot Wheels that push themselves on the track) he loved it there. Another friend came over to watch the kids and to take Emmie to school because we had to leave before Emmie had to leave.
We got to the Doctor around 8:15 AM, driven by Jen, our friend and “surrogate cancer mom”. She is the mom of our good friends in the neighborhood near us. After we checked in, we went to a little room and then the flurry of people coming in and out never stopped until 11:45 AM. The Head Nurse was the first to visit. She came in and the door saying “We believe in God here and he will help you”. She is a breast cancer survivor herself. She told us what was going to happen today and the people we would meet with. As she started speaking we all felt the spirit come into the room and peace came in our hearts and stayed with us throughout the day.
Then, the Oncologist, Dr. Stevenson came in. Dr. Stevenson took a few minutes to examine Kylie talking through the whole process so the nurse could take notes. He spent the next 20 minutes writing on a whiteboard and teaching us all about Kylie’s cancer. He shared that Cancer is Breast Cancer, Triple Negative, and Stage 3C. He also explained all about the receptors that this cancer does not have such as the HER2 receptor. This information was vital to us, it let us into his brain to see his expertise and concern for us. It brought us a lot of peace.
Towards the end of Dr. Stevensons’ time with us, he mentioned that we could do treatments in Boiling Springs, which is about 20 minutes from where we live instead of an hour. Then he paused, let silence fill the room, and then said, “I change my mind, I want you here. It’s not me, its the nurses and they make all the difference. Not that they aren’t great over there, but I know these nurses, and it’s her, (pointing to the nurse in the room), that works hard and is amazing.” We all felt the spirit confirm the truth of his words. We need to be under Dr. Stevensons’ care, we need to go to Greenville each week to have Kylie treated there. And the commute is nothing, we will go to whatever lengths are needed to get Kylie healed.
After meeting with Dr. Stevenson, the Radiologist came in and talked to us for a few minutes about what would happen, giving us a bird’s eye view of what would happen during that part of treatment. She told us she would meet with us again as we get closer to that point in treatment.
Then we met with the Surgeon. She was also very kind and loving. At one point while talking to us she paused and spoke out loud “If you were my daughter, what would i recommend.” She then proceeded to tell us that Kylie may and most likely will get a one-breast mastectomy and possibly both breasts. But we can decide and talk about this later as the time approaches.
After this, the Head nurse came in again and told us Kylie could get genetics testing done today at 12. We are ready to get rolling with the treatment so we said yes. We walked over to the lab area and Kylie got her blood drawn for genetics testing so we could check that box. We wanted to get started right away because In our minds there is no reason to delay and we need to get started as soon as possible with treatment to have the best possible outcomes. Especially with 16 Chemo treatments, surgery, and 6 weeks of daily radiation to get through, let’s get going.
Before the day ended, we were told that two other things had to happen before Chemo could start.
A PET scan and a Brain MRI. Both to check if the cancer has metastasized.
Unfortunately, the schedule for both of those scans is full for 2 weeks. We don’t want to wait for 2 weeks to get scans we need to get started now. The scheduler we met with said she would do all in her power to get the appointments moved up. She will call every day a few times a day to check on cancellations and move Kylie’s appointments up. We thanked her and then we left the hospital. We commenced praying and asking others to pray for something to open up so Kylie could get in.
In the evening today, we met with Kylie’s family and friends over Zoom and told them all the details about the diagnosis. The love and support were palpable, even over the screen. Everyone was so willing to do whatever they could to help Kylie.
After that emotional call, we went to bed for the day. Praying that we will get a call in the morning for some scans to move up.
11/15/24
Today Kylie went in and had an Echocardiogram on her heart. This is to make sure nothing is wrong with her heart and to give a baseline. It will help the Doctors know the specifics about treatment and see how the heart is doing with the treatment. They didn’t have any concerns going into it because Kylie is young and healthy.
We also got news today about Insurance not accepting a PET Scan right away, which means treatment will be delayed. This was hard to hear. The insurance wants a CT scan and a bone scan before getting a PET scan. The scans they want will show if the cancer has spread but not to the full extent that the PET will.
So what do we do? Well, we can pray and we can contact the Scheduler who is in charge of getting Kylie into these scans.
More tears were shed and for me particularly, anger came up. “Can’t they see, don’t they know, that my wife is needing this immediately?” Thankfully I have recently been practicing a lot of emotional regulation in my life and I took some time to work through the anger and allow it to be there. Another option for us would be to appeal the decision but that would take 2 weeks, if not longer. So what do we do?
We left it at that for the day and let things be, praying that miracles would happen for scans to open up for Kylie.
11/16/24
Today we wanted to have a normal day before treatment starts. We wanted to get out and do something. Most importantly we wanted to go to the Temple.
We loaded the kids in the van and started the 2.5-hour drive to the Temple. After stopping 3 or 4 times for potty breaks for Willie and Emmie, we finally got there.
We had planned to go sometime in November but this came up so we just went hoping they can let us in. We planned to trade off watching the kids. Going in one after the other.
Kylie went into the Temple first. A few minutes later she came out crying telling me that they were packed and didn’t have space for walk-ins, (it’s a really small Temple). I went in and explained our situation, mentioning that we came here to feel peace just after this difficult diagnosis. They were so gracious and helped her get into the Temple. We just wanted to feel the peace and power that comes from worshipping there like what President Russell M. Nelson always says.
By the time Kylie got out, the kids were ready to go. We had already eaten lunch, funded by a generous DoorDash gift card donated to us. I had already spent time in the Temple foyer praying and thinking, the kids and I also walked around the temple and talked about what we do there. So we decided to go do something else in the area before going home.
We have had so many people offer to help us out. Kylies aunt’s best friend even offered to help with the kids while we were out here visiting the Temple area.
We decided to go to Congaree National Park for a little bit to get into nature. One of the other places that we feel God’s love strongly. The boardwalks through the Cypress trees that are in the water were easy to walk on and offered great views. Willie loved sitting on every single bench that we passed.
Later that night after the kids went to bed, Kylie and I were talking about things and we started talking about the insurance decision to deny the PET scan. She said when she was in the Temple, she felt like she should just let things go. Let the timing happen when it’s supposed to happen. Knowing that the Lord has us in his hands and will lead things along as they need to happen. Being in the Temple as well as feeling the prayers people have given for us and Kylie has uplifted and helped our spirits today. We also took a look at the Facebook post that Kylie put up last night. The number of people saying they were praying for us is amazing and the list grows every day. Prayers work.
For years I have had this little plaque in our bathroom that says “Prayer changes things”. We believe this and we believe God will work the miracles in our life that we are asking for. He loves us so much. We feel that love through all of our friends, family, and strangers who have reached out to show support.
The people around us in our communities have stepped up to help and offer support in any way they can. We feel so blessed because we just moved here. We have only been here for a few months yet we are surrounded by people that it feels like we have known for years.
We moved to South Carolina in July. We moved after visiting this area for 3 days out of a 6-month trip last year. We were going around finding a place that we wanted to move to. We had a few requirements.
- Someplace our kids could play outside more often
- Not too much snow and long winters
- Someplace with a lot of things to do outdoors nearby.
Out of all the places we stayed, this was the place we stayed the least but we felt we should move here. So we did. Known only to God was one of the biggest reasons why, that Kylie would get cancer here. And we see the tender mercies all around us. People in our ward have gone through cancer, and Dr. Stevenson is one of the best cancer Doctors. We needed to be here. We love it here, we are very glad that we moved here, it has been a blessing to us even through this hard time. We see the Lord’s hand in guiding us to move here to this place. Another thing is Kylie has felt so peaceful and happy here, she loves our home and feels very good here.
Throughout this first week, there has been an outpouring of love. Friends have offered to pump extra milk so we can keep feeding Tommy breast milk. People have brought us dinner and offered to take Emmie to school and pick her up. People have even offered to fly in and come stay at our house when we need it. This whole experience has helped us to feel loved and cared for. It is helping me to learn to accept and welcome help. We are so grateful and will take all the help we can get.
Next week Kylie has a biopsy on a lymph node above her Collarbone, and then she has to get a Port placed in her chest for the Chemo. Hopefully, she will also get her CT and Bone Scan.
#kyliebeatscancer