One of Kylies good friends, from the time she was 8 years old, came into town on Monday to spend the week with us. I think it is amazing that Kylie has so many of these friends, I moved around a lot growing up and don’t have any friends I still keep in touch with from childhood. Maddie Jones came to stay with us this week. Her family has been very helpful through this whole cancer journey, we were looking forward to having Maddie stay with us and help us out. And we are glad she was here this week.
Kylie has been saying for a couple of weeks that going up the stairs makes her out of breath. Then she said she could not even stand to brush her teeth for two minutes a few days ago. And we noticed. She had to sit down more, she was having difficulty walking Tommy around during his witching hour, and she needed to rest a lot.
We did not know why she was so out of breath, except that she is in treatment for Cancer so we figured something was going on with the drugs she is getting treated with. It is expected that things like this happen when you are receiving Chemo.
On Tuesday, Maddie and Kylie went to the cancer center to have Kylie get her next round of Chemo. She had her blood drawn, then sat and waited in the nurse’s office for the results. The good news is that her White blood cells were up at 1.2. The bad news is that her Hemoglobin was significantly down. We all need oxygen to survive, but what carries the oxygen throughout our bodies? Blood of course. To get more specific, the Hemoglobin carries the oxygen around the body. The Hemoglobin has iron, allowing it to pick up the oxygen from the air we breathe. It then travels and delivers oxygen throughout our body. Hemoglobin also gives blood the red color. When it is low in a person’s body, the ability of the blood to pick up the oxygen in the lungs is severely impaired. And in Kylie’s case, the low hemoglobin was making it hard to stand and brush her teeth.
Because her hemoglobin was so low, she waited around in the nurse’s office to hear back from the Dr. The nurse had left to go speak with him and make a decision about what to do with Kylie in this state. The nurse came back in and told Kylie that they decided to not give her treatment this week. Gasp! They reassured her that this happens from time to time with patients and it’s okay. She is at a point now where missing a treatment won’t matter in the long run. And the even better news is that the next time she goes in for treatment, it will still be on the same schedule so she will not get an extra week added on. Kylie was joyful at this news!
If you remember a couple of weeks ago, the Dr. did say that we can expect Kylie to get a blood transfusion at some point. We thought it was going to be due to low WBC, to help raise her neutrophils. But no, we were wrong. That is what the injections are for that she gets every third week. The blood transfusion is to help raise the hemoglobin.
On Wednesday, Kylie and Maddie once again went to Greenville, after spending a good 5 hours there the day before, they went back for another 5 to 6 hours. This time it was for Kylie to get a double dose of blood transfusion. The nurses said it would take about 24 hours per dose before she noticed changes. They were right, by Thursday Kylie was putting Tommy to bed for his naps, moving around with him. By Friday Kylie was moving around, doing even more things. And on Saturday, wow, she was like a whole new person. She has not felt this good since before being pregnant with Tommy. She was up all day Saturday on her feet, cleaning, walking, and moving around. I have not seen Kylie with this much energy in so long! It was a breath of fresh air.
On top of all these good feelings for Kylie, Maddie was so amazing with everything. Maddie is not around kids much, all her siblings are grown and none of them have kids yet, but you would never know that Maddie is not around kids. She did everything from feeding Tommy to putting Emmie to bed, to doing school pickups, to hanging with Willie. She was very present with the kids, interacting, talking, and showing them cool books markers, and crafts. I had a lot of work this week, so when Kylie and Maddie were not at Dr. Appointments, Maddie was diligently taking care of the kids with Kylie.
Maddie also helped out so much around the house. Over the phone on Monday, Brad and Kristi told Kylie that I needed to stop doing stuff. Stuff meaning the standard cleaning things that I usually do and things that were adding up for me and causing me to get burnt out more than I needed to. This week I stopped doing things and tried to relax. And Maddie picked up all the slack. She did the dishes, washed bottles, and more all while essentially being a third parent. I sat there and got caught up on work and some other tasks I needed to do. I also took some time to get a massage. And on Saturday I went out and played a nice round of Disc Golf with some friends. I also have taken time to go running this week and have felt the benefits of exercise. I also went to Emmie’s school and surprised her at lunchtime. We got to eat Pizza together on Friday! I was able to take some time to meet with my life coach and get some good pointers on little things I can improve or work on to help my part of the situation go better.
On Sunday, we woke up and decided to go to Disneyworld for Martin Luther King Day. We briefly talked about it the night before and before she got diagnosed with Cancer we were planning to go in January. Mostly we wanted to go before Willie turns 3, my big boy. Then Kylie got cancer and we didn’t think she would be able to go until September after all the treatment was complete due to how Chemo makes her feel. But this week changed things. Kylie is feeling so good that she decided it was now or never. YOLO. We decided to go now because who knows what will happen. We packed up and loaded the van then headed on the road. Thoughts have been tumbling around my brain as we decided to do this. And all of these are not going to happen because she will be cured but they helped me put this little trip into perspective. What if she gets her PET scan in 2 weeks and it turns out she is in a worse state? What if she does not get cured? These thoughts helped me jump in the car and go.
One of Kylie’s favorite songs is Til you can’t by Cody Johnson. The chorus says “if you got a chance take it, take it while you got a chance.” And so, this is how we have started trying to live our lives, especially after cancer. Don’t wait to tell people you love them, don’t wait to chase your dreams, don’t wait to share testimony. Just do.
While we drove, we listened to Kylies cousin Abby’s mission homecoming talk and the rest of their ward meeting. It was a wonderful talk and we are so happy that Abby is coming to help us out this next week.
Overall it has been a good week. After wading across a river of misery for a few weeks, we got to the other side of this river. There are more to cross and probably some huge mountains as well, to get through treatment and get Kylie healed. And we can make it with each other and the love and support from all of you.
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