I don’t know where to begin. I’ll start with a positive. There is a new song out called Waffle House cut by Jonas Brothers. Yup. And I LOVE IT. I love the actual Waffle House (The Awful House) and this song. It has an upbeat 80’s kind of kick to it. In my head I have the entire dance choreographed. I have such wonderful memories of late nights at The Waffle House, Perkins, Village Inn, Burrito King (drive-thru on either side of the car, BRILLIANT), Taco Johns, Eggberts, long awaited Pizza Shuttle deliveries, and oh my gosh just starting to list those makes me think I should just stop there. No wonder I gained 30 lbs my freshman year in college. Gosh that was fun. Late night talks. Life full force ahead. Few cares. Dreams. Laughs. Memories. Strange how classes were usually cancelled for me that next day. I have taken my boys many times to the Awful House in Parker (not late at night or early in the morning). My Dad, their Papa, has a love of the Waffle House as well. Santa Claus has even brought Waffle House gear at Christmas. I hear Luke has been a few times late night. Warms my heart.

I left the hospital two days ago for the first time to zip to the local King Soops because Luke said strawberries sounded good. Driving there was when I first heard my new favorite song. It was my first time outside in 12 days, my first time in an actual grocery store since mid February. Considering I am a Costco-aholic feeding 2 gigantic boys, this has been a challenge for me. I’m not complaining considering all other things going on. At all. I also have such fun memories of taking my little tots to the grocery store, putting the padded front thingie majig on the front part of the grocery cart and lifting them into it up and down trying 10 times before their little legs actually went into the right little holes. A workout in an of itself. Then stuffing the pockets with snacks and random stuff in hopes it would save me and keep them busy if the shit hit the fan. Literally and figuratively. We would cruise the aisles and I would talk to them about who knows what. Then, as they got older and I had two with me, it got a bit more chaotic. They always wanted the cart that was 12 feet long that had the play front car with the steering wheel. That fucking cart was literally like driving a semi truck down a one way street. Don’t get me started on trying to turn those. During checkout I would find random food in the cart that the boys had thrown in when I wasn’t looking. My favorite were the Trader Joe’s mini carts. We would have to search the store for a cart if none were out front. Now it seems like Trader Joes has invested in a fleet of them. Everytime I walk into a Trader Ho’s now and see those little carts I smile and remember those times. Many fond memories but many times so frustrating. Holy digression. I don’t know if that is a word. It is now.

Ok, now for a smidge of what has been going on the last 3ish days. I’ll write about my stem cell collection another time. It was…interesting. I “harvested” for 14 hours and it was too late to do the transplant that same day. They also weren’t able to get an accurate count of how many cells they had collected because the lab that counts them closes at 5 PM. We knew what we had by 5 PM but I went until 10 PM. I kept my central lines in each of my arms overnight in case I needed to do more the next morning. But, alas, when the lab opened and counted, we had MORE than Dr. Kohler had calculated for! YAY!

Transplant. I couldn’t stop smiling all day. We made it! Getting to transplant was like preparing for an Iron Man (ha, like i would know anything about that prep). Alas, we did it! Luke felt great for around 12-16 hours. Then the fevers started and still have not let up. He will chill so bad he shivers and his bed shakes. I go into mom mode and gather heated blankets, wrap his feet, hot wash cloths, get baby mini heated gel pads and eventually I lay across him or beside him to get him to not shiver. IV Tylenol cuts the fever but he was at his max dose every 6 hours but at 3 hours 45 minutes, the fever would creep back in and he would have to wait it out. After a couple days of that one of his nurses had the idea to lower his dose and give it every 4 hours. BRILLIANT! That has helped but he still has breakthrough fevers that make him feel horrible and he feels like his skin is burning.

The nausea, he would say, is the worst. The constant gut wrenching puking takes it ALL out of him. Mentally and physically. That hasn’t stopped either. Adding, titrating, and talking about all the meds for all of this is a lot. Despite Luke feeling like he just got run over by one of those long truck grocery carts a few times, he knows exactly what is going on and what is going into his body. He knows all the branded and generic names, he knows what each IV med is or pill looks like. He has stopped taking pill forms because he can’t keep any of them down. He has gotten so sick I wondered if they would give him a day or change his next chemo round. Nope. We heard and keep hearing over and over and over and over “It’s going to get worse.” It is what we have been preparing for, redundantly, for a very long time.

Today is day +5. Luke started a gnarly chemo on day +3 called cyclophosphamide. It is also an immunosuppressant. Today he starts Tacrolimus and mycophenolate mofetil (MMF). We also have antifungals, antibiotics, kidney and liver protection meds, electrolytes, nausea meds, anxiety meds, sleep meds, allergic reaction meds, and on and on. We got this. I keep telling Luke this is what we have been preparing for. This IS the worst part. This is the deepest hell and here we are. You are strong. Your body and your mind will work and we are an hour, a day, a minute closer to freedom and life. And I will be by his side every single step of the way. Not only am I, but the biggest army he can imagine is right by his side and he is not alone.

Feeding tube- another very long process. Again, talked about for months, prepared, and is part of every single discussion, which is a million a day. There is a small window to do an NG tube. Not too early, but not too late because once the mucositis really hits, it hits fast and is very difficult to do. He is awake for this, of course we try to time his meds to make him as comfortable as possible. They also added on a baby dose of VERSED. Luke hadn’t eaten or drank anything in days and his throat and mouth were starting to get the bumps and signs of mucositis. He decided 2 nights ago it was go time for the tube. A few mess-ups, pukes, x-rays, and 2 goes at it, our nurse FINALLY got it in the right place. Luke tolerated it quite well. Very well. The process could have been much smoother but ended up a bit of a clusterfuck and was very stressful. To try and ease the tension I turned on some music afterwards and my phone was on repeat Waffle House. I then realized that was an cruel song to play right after inserting a feeding tube. Sorry Luke. The following morning, yesterday morning, they started using it. He got 1 tsp of formula/hour. They call it a gut stimulating dose and then they gradually increase it daily. Except…

He received platelets last night around 2 am and had a reaction. It became difficult for him to breathe and he started wheezing. The BMT attending came in quickly, evaluated, and prescribed a giant dose of benadryl. It worked. Except…after all that Luke got sick and up came the tube. My sweet boy. His mucositis is so bad now and he is so nauseous they don’t think they could get another in, let alone have it stay in. So we are moving on to other ways to get him some nutrition. With all that also came more puking. And the fevers continue but today, thus far, don’t seem to be as consistent. Thankful for that. There are many other things, but that’s the jist.

Buckets of Awful Waffles,

Suz