We had previously lived in Madison, WI. Kevin worked for a health care software company in which he traveled to client sites to help implement electronic medical records. I worked as a Recruiter/Account Manager for a staffing agency. We married in 2010. A few years later, we decided to try and have a baby. We wanted to raise the baby around our family, so we decided to move back to the Quad Cities. It ended up working out really well for Parker too. The school he would be attending was brand new. So, it was not only a new school for Parker, but it was a new school for every kid! He quickly became friends with a great group of kids, and his teachers were wonderful. Kevin and I kept trying to have a baby. After having a heartbreaking miscarriage, we learned we were pregnant again. We welcomed Kaitlyn in May, and Parker started Junior High in the fall.
Kevin still traveled for his job, but I wasn’t working during that time. Our weekly routine consisted of Kevin going to the airport early Monday mornings and getting back home late Thursday nights. Every once in a while he would get a break for a week and work from home. I would get up every morning, get Parker off to school, take care of Kaitlyn and do monotonous daily tasks. It was nice. It was simple. It was routine. Now our lives are anything but routine.
The day before we’re scheduled to get chemo, Parker has his blood tested. When counts are good, we get a call saying he’s able to start chemo the following day. If counts are low, we just wait a few more days and try again.
Our suitcases are always packed and ready to go, so I usually don’t have much packing to do. I’ve been lucky and haven’t had to pack for Kaitlyn and bring her yet. Kevin’s job has been very flexible, thankfully. We also bring Parker’s PS4, some card games, and my laptop for entertainment. They have a teacher at the hospital, so we also bring schoolwork.
Usually we have to be at the clinic at 8am, so we leave the house at 6:30am. Before we leave home, we put a numbing cream on his skin so he doesn’t feel the poke when they access his port. I always get him McDonald’s breakfast on the way to the hospital too.
The first thing we do when we arrive is go to the pediatric specialty clinic on the 2nd floor. They get his vitals and access his port. Then if we’re lucky, they send us to our room on the 3rd floor. If we’re unlucky, they give us a pager, just like what you would get while waiting at a restaurant, and buzz us when a room opens up. We’ve had to wait a couple of hours before. In those cases, we wander around for a while until they page us. Then, if we’re really unlucky, we get a shared room...that story is for another day though.
Once we get to our room, Parker crawls into the bed and goes back to sleep because he usually stays up too late the night before and getting up at 6:30am is too early for him! While he sleeps, I go back out to the parking garage to get our luggage. We wait for the doctors to enter the orders and the pharmacy to send the chemo. They hydrate him, and he has to pee a certain amount before they are able to start chemo. We pass the time watching movies and playing games when he’s feeling good. When he’s not feeling well, he sleeps and I usually sit on my laptop, read or watch movies. He and I talked about journaling. I ordered him a cool journal and some fun pens online with hopes that he’ll start writing about his experience. He seems interested in doing so. He also has developed an interest in photography. That started in September when we took a trip to Wyoming, but he’s really getting into it now. He was taking pictures of his sister at home last week. I’m hoping he’ll be able to go outside during his hospitals stays when the weather gets nicer and take some pictures to pass the time. He also texts his friends a lot more now and they have been great distraction!
There are Dance Marathon and Child Life volunteers that will come and offer to play games with him. They also have an activity planned every day, but he hasn’t participated in them yet. They also have a therapy dog that comes around, but he was sleeping the last time it was here. Every Monday they do Bingo on a hospital TV station. We have fun playing bingo, and if he wins, he gets to pick out a prize. He’s won a couple of times and has picked out Scrabble, Jenga, and Connect Four. They have more than just games, but he enjoys getting and playing the games.
After sleeping all morning, Parker usually wakes up around lunch time. He doesn’t like the cafeteria food. Just thinking about it makes him sick. This week he coerced me in to bringing Pizza Rolls, Hot Pockets, and popcorn. I intend to bring healthier foods next time, but I’m going to need ideas! I did talk him in to trying french toast off the room service menu for dinner, but he got sick before he could try it. Usually we order pizza or delivery from a restaurant a few times during our stay, and Kevin brings us dinner when he visits.
When we get home, we usually go straight to bed. It doesn’t matter what time it is. I usually don’t sleep well in the hospital, and he’s usually tired from the anti-nausea meds.
The next day we have to give Parker an injection to stimulate the growth of white blood cells in the bone marrow.
It takes a while for Parker to get back on a normal schedule after being in the hospital. After his last five day stay, I found myself making him breakfast at noon and dinner at midnight. He was staying up until 2-3am, unable to sleep.
He’s been able to go to school a few times since December. School wears him out though. He usually can go one day, but sleeps most of the next. I also don’t send him when his counts are really low because I don’t want to risk an infection or illness. His school has been very understanding.
Every Monday, Tuesday and Wednesday he has to take an antibiotic twice a day. We have 4 different anti-nausea meds at home he can take. He has a mouth rinse he has to do 3 times per day to keep mouth sores away. Our kitchen counter is now a mini pharmacy.
He gets blood work done twice a week to check his levels. If his hemoglobin is low, we have to go to the hospital for a transfusion which usually takes about 5 hours. That’s done outpatient at the pediatric specialty clinic. He hasn’t had to receive platelets yet, but that’s always one of the things they check too.
At any time he could get a fever. When that happens, we have to head straight to the hospital, and they give him antibiotics as a precaution. I find myself frequently feeling his forehead to see if he feels warm. Most of the time I think he feels warm, but when I take his temperature, it’s fine. I annoy him by constantly asking him if everything is ok. I’ve heard, “Mom, I’m fine.” numerous times followed by an eye roll.
But that’s our new “routine”. It’s much busier than before. And though I didn’t think it was possible, we’re closer because of it. Because though the days might be long and boring, at least we have each other.