Crazy week 2

 

Crazy Week 2

Monday Lindsay wasn’t doing well again so I decided to take her back in. Her lump had started to leak and they decided to put in a drain. They asked us to come back every day to change the drain. 

Tuesday we got Lindsay’s blood work results back, she was positive for mono! (Who has she been kissing!? Haha). Felt good to have some answers. Andrew was still super sick and miserable from his surgery and he had lost 10 pounds!

Wednesday, i decided to let Lindsay go to school for the first time. It was rough. She had missed so much school that my A average student had become an F average student. I went to the school to drop off some things for Lindsay part way through the day and had a meeting with her counselor. I CANNOT express how much I love her Counselor! Miss Cox is the very very best! She was so tender with both Lindsay and me and we both had a good cry in her office. She was so patient with us both and gave us lots of grace, understanding, and support. She reminded Lindsay about Shadrach,  Meshach and Abednego and who was with them during the fiery furnace. And who we should yoke ourselves with during the hard times. She told us she would email Lindsay’s teachers to give them a heads up on everything she’s going through (her own health challenges, the move, and Darin’s diagnosis). She was just so good and kind and it was so therapeutic to be with her (for both of us). She is pure goodness!!

When I got home from the appointment , I came home to a wet floor in my a laundry room and a broken washing machine!! We got an appointment for Friday to have a repair man come. Mom and Heather were so good to help clean all day! 

Thursday had some highs and lows! We thought Andrew was good enough to go to school, but he was in too much pain, so he got to go spend the day with Heather while Darin and I went to Huntsman. Darin had his 2 hour mapping appointment and got his mask made. (I got to enjoy some down time in the waiting room reading my book the small and the mighty). Then we met with our awesome nurse who was the first person to not sugar coat what Darin will be going through. It is going to be a lot harder than we had originally expected. Radiation generally isn’t too bad, except when it comes to the throat. She said it will be horribly painful. She said food will start tasting like cardboard or metal. She said every swallow needs to count. She told us to get creative and find every way to add calories…pats of butter, cream, etc. she said “if a neighbor brings you a turtle pie and it tastes good, you don’t eat a slice, you eat the whole pie!” She told us a lot of people will say sugar feeds cancer, but she said don’t worry about that during this time, you priority is calories and if dessert is what sounds good, that’s what you eat. She told us they will regularly weigh Darin and if he gets too low, they will insert a feeding tube. She said it isn’t the worst thing, but we want to avoid it because he will need therapy to have to relearn to swallow. She also told us that Darin will need to go on part time disability part way through treatments because it will be too hard to work. Darin’s work has been very generous and we feel so grateful for all they have done to support Darin through this phase . He will get time off and still have benefits, and a job to come back to! 

A while ago Darin read online that some radiation patients need to get a tattoo to know where to shoot, and he REALLY didn’t want one, and I REALLY DID want him to get one because I thought it would be hilarious. He came out with not one tattoo, but THREE!! It made me so happy! Haha! 

Thursday afternoon my mom and sister were helping me and my mom went to get a garbage bag. She said “Why are your garbage bags all wet? Do you have a leak?” I said, “No! Not because I know, but because I can’t handle another crazy thing!” Well, we investigated and yes, there was a hole in our sink!!! 

Friday the repair man fixed our washing machine and Darin fixed our sink! We also had a repair man come to make a plan to fix a ceiling in the basement bathroom that had issues from a small flooding. Andrew went back to school and things were looking up!

Also, my friend Shauna, in Germany told me that all of Lindsay’s symptoms sounded like Kawasaki disease and maybe look into it. I decided to ask the doctor the next day. 

Saturday we bought a new desk for the new house. It didn’t quite fit through the door. Darin and his dad took off the trim to fit in it and it still didn’t fit. I started getting frustrated and overwhelmed and teary so I decided to take a break by taking Lindsay to the doctor to get her daily drain changed. (Darin and his dad got the whole case out so the desk could fit in! Yay!)

When we went to the regular drain switch appointment they told us they were removing the drain! I was so excited! Until they told us that actually wasn’t good news. They said that the drain wasn’t working and they would give her until Tuesday for it to get better otherwise she would need surgery on Wednesday. 

I also said to the doctor, “I hate to be one of those moms that hears things from a friend or reads things on the internet and self diagnoses, but is there any chance Lindsay could have Kawasaki disease?” They said, “I can see how you would think that, especially since there are so many similarities to mono, but since she already tested positive for mono there is no way she would have both, but we can look into it if you’d like.” A little later she came back and said “100% Kawasaki disease! 100%” Thankfully we think she is already through the worst of it! 

As we were driving home from our appointment (we have been going to the Farmington UofU urgent care), and we were almost home we got a call. “We need you to turn around and come back! We just got Lindsay’s labs back. She has a horrible staph infection!”

Poor girl!! No wonder she’s so sick! She has mono, Kawasaki disease, staph infection, and possibly needs surgery Wednesday!

Here’s hoping for better week next week!!