In true diagnosis day fashion, Mason woke up throwing up.. we have had a doozy of a week with throwing up, constipation, and lots of meds. When you hear “maintenance” you think- oh! That’s going to be easy for him… so far not so lucky. We struggled getting the steroid predislone in. Austin tasted it and said it’s sweet with a little bitterness after taste. We ended up mixing it with chocolate syrup and alternating every taste with apple juice. I think we had 2-3 doses out of 10 where he didn’t puke. He has been taking his other meds fairly well this past week.
After no pooping for 4 days, we gave him many different laxatives and foods packed with fiber and he finally went. He was feeling so much better and his belly wasn’t rock hard. We were close to needing to go to IA City for more treatment but Mason started going right before I made the call. We stayed home all week due to his nausea and being afraid he was going to explode at any moment. He also didn’t have much energy and was pretty moody with us.
Today was all about Mason and whatever he wanted to do. After we washed his bedding we went to Jimmy’s Pancake House for his usual Mickey Mouse pancake and scrambled eggs. Then we went to the family museum and got there as soon as a school field trip walked in 😳 we haven’t been in busy settings like that in a long time it was a little overwhelming for all of us, especially Mason. We played a little bit but decided to come back after they left. We went to the library instead where Austin & Mason built dinosaurs, we played trains, and we found some good books. We went back to the museum as the big group was leaving and it was much more manageable for us. Mason loved playing in the fire truck, going down the slide, playing at the water table, and playing grocery store.
Austin & I hadn’t had our coffee all morning and were needing it on this gloomy rainy day. We went to a coffee shop for lunch and Mason got a smoothie. Mason and I had bad luck today dropping and spilling things- I spilled water at breakfast, Mason spilt his smoothie, and I dropped my coffee outside 😅 we decided it was definitely time to go home- and we were sick of the rain. We got Mason down for his nap and just relaxed. Mason slept 3 hours and woke up in a good mood. Austin built him a great fort in the basement and watched some cartoons. We had dinner, gave his belly medicines, and got ready for bed. We had to give him his methotrexate oral chemo that he gets weekly. That went ok alternating with apple juice.
At bedtime we talked to Mason about this past year. We told him how proud we are of him for all that he has gone through. He is so brave, strong, and has gone through more in the last year than many do in a lifetime- he has earned the name Mighty Mason 🧡
Austin and I were talking today about where we were a year ago. We remember daycare asking us if Mason gets nose bleeds easily at home, which he didn’t, because he fell on a stuffed animal and had one. That next week Mason fell at Home Depot and had a bloody nose we couldn’t stop for a while. He started to develop petechiae on his arm and forehead. Austin looked up “purple spotting” that wasn’t raised and looked like a bruise. It said one of the causes could be leukemia and we thought- ya right, not our kid.. like when you look up your symptoms for anything on Mayo’s website and you find out you’re dying. On April 22nd I noticed a lump on his neck- swollen lymph node because he had a cold for a few weeks. We pointed out these symptoms to our pediatrician, Dr. Stecher, and she listened, found 3 more swollen lymph nodes, and advised us to get blood work. Who knew that would be the start of many pokes for Mason. He had blood work done in January that was normal so we thought nothing of it.
I have a friend that is a nurse with Dr. Stecher and she usually just texts me, of course with our permission, that Mason’s blood work is fine. We didn’t get that text this time though. Dr. Stecher called me, called Austin, then called me again but we didn’t answer right away. Austin was in a meeting, he can still tell you the details about that, and I was with a patient I remember exactly who it was and what I was treating her for. I ended my patient a little early to listen to my voicemail.. I knew something was wrong when I heard Dr. Stecher leaving the message. I called back and the nurse quickly got Doc. She told us we needed to go pick up Mason from daycare, go home to pack bags for a few days, and go straight to Stead Family Children’s hospital Level 11 and they would be expecting us because she was pretty sure Mason had leukemia.. I didn’t know what to say besides crying and asking her why she thought that.
When I was able I called Austin and he left to get Mason while I went home. I remember hugging Gracie and breaking down about what we just heard. I threw some things in bags for us planning on a day or 2 visit. Austin got home with Mason and we squeezed each other so tight. We were in denial the whole time that there was no way our sweet boy had cancer.
Our lives have changed so much in the last year. My career has been put on hold to take care of Mason, I wouldn’t have it any other way though. We haven’t left the quad cities, besides for appointments, in a year. We have missed weddings, baby showers, countless events, and seeing friends and family because what cancer has taken from us. Everyday we pray that Mason continues to be brave and strong, helping us all through his journey. We have become a team and have had to learn to communicate even more. We’ve put over 10,000 miles on our cars with trips strictly to Iowa City.
We will be in treatment until September 2025. Until then we will continue to fight for better options for these kids, bringing awareness to others, and continuing to give our boy the best life we can.
