The Red Devil

Kylie started this week with a Brain MRI on Monday at 7 pm. Emily told Kylie to make sure and tell the workers what music she wanted to listen to she didn’t get some random songs haha. She made sure they played some country music for her while she was getting scanned. 

Kelsey, who used to shave her dad’s bald head, shaved the remainder of Kylie’s wispy white hairs.

On Tuesday Kylie and I went to her chemo appointment. We have been praying all week that her numbers for her neutrophils, hemoglobin, and other key indicators would be up enough that she could get treated. 

After getting her blood drawn, we went and met with the nurse, Becky. Well before that, Kylie had her blood pressure and weight taken, and while we were in the hallway the head nurse Sebrina came out jumping and so excited. Like a little kid on Christmas, hugging Kylie and celebrating the wonderful news about her Ultrasound, PET scan, and brain MRI. 

Then we met with the nurse Becky in a little room and looked over her numbers. Amazingly everything went up, except potassium. She needs to become part monkey at this time in her life. Maybe watching the Planet of the Apes movies would help her. 

• Hemoglobin: 1.7 

• Platelets: 179k platelets

• Neutrophils: 1.20

Becky told us that the cancer in the tumors is DEAD!!! and there is no evidence of cancer in the lymph nodes!! 

The PET scan does not look at the microscopic level so it is possible there is still cancer but what it can see and test is Dead! Whoot! This is such a big blessing from God. He is helping Kylie heal through prayers, faith, and modern medicine. 

Becky told Kylie that she would have to get an injection this week to help with the effects of the Red Devil. Some of the side effects of the injections could be bone paint. 

After the meeting, we went to the chemo floor and got settled. Kylie had her pre-drugs 

Pre drugs: 

• Aloxy: Another anti-nasau

• Decadron (steroid)

• Immend (nausea) 

• Keytruda (immunotherapy) 

Then she started the chemo drugs. First up was the Red Devil- ice chips to eat. This one is known to cause mouth sores much more than the other drugs so the nurse provided Kylie with ice chips. 

Other facts about the Red Devil:

• Scientific Name: Doxorubicin
• One of the most potent Chemo drugs approved in the US
• It is an anthracycline that slows or stops the growth of cancer cells by blocking an enzyme called topo isomerase. Cancer cells need this to grow. (Cancerresearchuk.org)
• Unfortunately, as with this and all other chemo drugs, they could have a lingering impact on Kylies organs

They told us it hadn’t been found to cause neuropathy so she didn’t wear her Suzie pads. However, later in the week, she did have some tingling in her fingers. She may wear them next time. The Red Devil was only passed through in about 5 minutes. The nurse JJ took the two big tubes hooked them up and pushed it through. 

After that, Kylie got Cytoxin for over 30 minutes. This made her feel hot flashy and weird. So they slowed it down and it took about 40 minutes. 

About 20 min after getting the Red Devil she went pee and already her pee was pink. That stuff moves fast. 

During her Cytoxin, Dr. Stephenson and Sebrina came around and talked with us. They were both happy. The doctor said it’s called Complete Radiographic Remission. “Complete radiographic remission” means that based on imaging tests like X-rays, CT scans, or MRIs, there is no visible evidence of disease present in the body, indicating that the disease has completely disappeared as far as the imaging can detect. There could still be microscopic cancer cells floating around and research has shown continuing treatment is far more beneficial than stopping.

When we got home, Kylie was up and chatted for a bit then she went to bed for a few hours. She woke up and laid on the couch awake for a bit then she took another nap. 

A short while later, she woke up for an hour or so, then went to bed for the night. 

She slept as much as Tommy for the first three days after getting this new drug. 

I have included a sleeping picture here. I used to take pictures of Kylie sleeping just for fun, but now I take them as part of the journal. Here is an old one. 

Emily and Kelsey helped me take care of the kids while I worked. 

On Thursday we had a little party to celebrate her treatment. A fun party with fun games. Emily is a master party planner so she and Kelsey planned this fun party to celebrate this milestone. 

I took work off on Friday and we are glad I did because Emily and Kelsey went home on Thursday. 

It was so good to have them here to cook and clean and play with our kids. Emily even made a Valentine’s box with Emmie. It was nice to have chats about life work on projects together and play games.  

I took Willie to breakfast at Waffle House for Valentine’s Day. We picked up some biscuits and gravy for Kylie and Emmie to eat. Then Kylie took a nap and rested on the couch. 

I took the kids out later to do some errands and we just spent the day together saying I love you! 

We did our weekly tradition of movie night and watched Lady and the Tramp, live-action. Then I picked up some Thai food for Kylie after the kids went to bed. She took another nap that day and went to bed around 8:30-9. 

This week we got some more Valentine’s Day packages from our family. We are so thankful for all the fun things and notes people write to buoy us up. 

Even with the good news, it’s sometimes hard to feel super excited about it. Kylie and I both were talking about this. There’s still a long way to go and lots to do. We are very glad the treatment is working. 

On Saturday Kylie was feeling pretty good so after resting on the couch, we made it to Target as a family so Emmie could spend the dollars she won at the Valentine’s party. We also picked up some pizza. 

After the kids went to bed Kylie and I watched The Proposal. I’m pretty sure it’s the first movie we have watched at home since a Christmas movie I guess. It was nice to sit together and laugh. 

We had a rough night with Tommy on Saturday. Thankfully this is a rare thing for the sweet angel baby. Once I get sleeping, it is hard for me to wake up and help but only with the babies. I’m fine if Emmie or Willie gets up, I know it’s my duty and role to help them. It’s almost as if with the baby my brain thinks it’s not my responsibility to help out or something. I can’t explain it. I get so foggy and lost when I wake up to help Tommy sometimes and I wonder “What’s going on? Why am I up? Sometimes I get testy in the middle of the night. Something I am working on. Due to this and the fact that Kylie can’t do things for herself and that she had to wear a wig on Sunday, she woke up feeling sad for herself. Totally understandable. Later Sunday night we had companion inventory and I was asked to work on my middle-of-the-night issues. Maybe I need to put some duct tape by my bed so when Tommy wakes us up I can put some on my mouth and just be quiet haha.

We have a long road ahead. We had good news this week. We will keep going, even when it’s difficult. Christ will help us get through. Thanks for the support and love. 

#kyliebeatscancer