Life has been a little too interesting since I last wrote. Everyday I find myself thinking this ride can’t get any rougher, but it does. Friday we were told to wait until Wednesday (today) for answers. Instead of focusing on the waiting as is so easy to do, we tried to make the most of our chemo-free weekend and hold onto the hope of the possibility of no chemo. Mason had a friend over and played outside like a typical 9-year-old (minus the running), Alli and I got to spend some time on a mommy/daughter date with good friends, and we even got to do a family photo shoot! We were blessed by a friend who does photography with a free photo session and we giggled our way through most of it. We (mostly me) are super awkward in posing which becomes pretty hilarious. The weather was simply perfect and we felt like that was a true gift from God. Instead of chemotherapy in a hospital as planned, we got to be outside enjoying each other in 75-degree weather in February. We’ve learned to be grateful for moments as they happen. Saturday is etched in my memory as a wonderful, happy day. And, I even have photographic mementos.
I can’t tell you how happy ^^^ makes me! The kids posed themselves here and they really love each other. We have actual proof! And, those grey stripes? Not me. I almost didn’t even let that happen because of my need to micromanage. We were kind of pressed for last minute outfit decisions and I asked each of them to go pick out something they would like to wear. They BOTH picked out grey stripes! And, it actually works…I think. Fashion is not my thing, unfortunately.
Saturday night as I was flushing Mason’s catheter getting him ready for his shower, he started complaining of his chest hurting when I touched it. I was just getting to the point where I was feeling pretty confident in my abilities to flush both tubes and get his dressing waterproof and now this! I didn’t think much about it as we’d had a HUGE day and I knew he was mostly exhausted. I figured a good sleep would fix everything. But, I was wrong. By Sunday morning, he was in pain even when his chest wasn’t being touched. We ended up heading to the ER instead of church. KU emergency room on a Sunday. Oh my. That could be an entire blog in itself. We spent a full 5 miserable hours there and were sent home with an antibiotic. That night Mason spiked a fever and only appeared to be getting worse. By Monday morning, the dressing that had just been changed in the ER was full of green/brown drainage. To be fair, none of this was happening when we were in the ER, or they would have treated him completely differently. But, we ended up with a wasted, painful Sunday and made no progress in getting him better. By Monday at noon, he had been admitted and his fever continued to creep higher and higher. After 4 hours of every specialist in every department weighing in on his treatment, they finally pulled his catheter out. Just like that, no medicine or anything. This line that they had just surgically placed 10 days earlier was ripped out. He screamed through the entire thing because he was so sore already. This was excruciating to watch . Matt and I felt so helpless. All of Monday and through the night, his fever never once broke. Mason didn’t look or act like himself. I had kind of prepared myself for days like this once chemo starts, but I wasn’t prepared for it at this point.
By Tuesday morning, he no longer had a fever and had started being the funny, sweet boy I missed. We were lucky to have the same day nurse, Cathy, both Monday and Tuesday and she worked so hard to get Mason better with as little pain as possible. The two of them really hit it off and the banter between them was hilarious. Mason had us laughing so hard and was clearly a different boy than the one Cathy had first met. Tuesday was filled with more visitors than our tiny hospital room could hold. We had lunch and drinks delivered to us as well as the best home-cooked dinner. We were blessed with groceries delivered at home and friends and family helping out with Alli and Jazz. And, to top all of it off, we got a delivery from Mason’s school via his amazing guidance counselor. A family at his school (whom we’ve never even met) gave him their Xbox 360 and several games as well as several gift cards in a nice little personalized bag perfect for carrying the Xbox back and forth to the hospital. When I sit and think about the number of people that blessed us in one way or another just in this one day alone, I’m beyond humbled. God is raising up an army around us. We feel so loved, prayed for, and supported. From dear friends and family to acquaintances, to people we don’t even know – we are blown away.
Today was a good day and a hard day all at once. We were lucky enough to get our favorite nurse for one last day but we got absolutely NO NEWS. None. It is beyond hard to have these deadlines pass and get nothing. Our not-so-favorite-always-makes-us-wait pathologist in Florida has still not offered his valuable opinion. I want to scream and throw things and I’ve decided every hospital needs a room for this. It needs to be sound proof and filled with expensive glass items that make a beautiful noise when they shatter. It needs to just be labeled as a restroom so that your loved ones don’t realize what you’re doing. This is what I needed today. Waiting definitely hasn’t gotten easier for me. Distractions are the best fix. But, even though I’m a big mess, I was still able to laugh out loud all day long. Mason has been something else. He has just plain been hilarious. He doesn’t appear to be one bit worried about what the future holds.
Here are a few moments that have made me smile.
This was the first meal Mason chose when he finally felt like eating after a day and a half of no food – pepperoni pizza with a side of cold pepperoni and some strawberry jello. This is a balanced meal, right?
So much about this picture makes me smile. Left to right: Mason’s favorite Sonic drink – Grape Sprite, his trusted wookie, “Chewwie”, who has been through so many procedures by Mason’s side, that Xbox remote that provided a wonderful distraction from his pain and gave him something to do with his dad when he visited, and that tired man in that chair who worked all day and couldn’t wait to come hang out with his boy
This face! This is his “Of course I’m cool enough that my nurse would make a trip to the store just to bring me pepperoni for breakfast” face.
Nurse Cathy. Mason’s newest friend. There are just no words for the way these two hit it off. I can’t tell you how much respect and gratitude I have for her and others like her who give so much of themselves each day to care for others. She was AWESOME! Mason wanted me to get her phone number. 😉
Throughout our past 3 days in the hospital, Mason has been called a handful of different names. During rounds Tuesday morning (which, by the way, are JUST LIKE GREY’S ANATOMY!!!), Mason somehow became Nathan from Lees Summit. He was also called Ryan at one point. This morning, as he was creating his new Xbox account, he was named ScrewyFoil. He now answers to any of the above and laughs hysterically at all of them.
This just made me smile. Mason’s been called all of these different names since we’ve been here, and I’m just MOM. I’m good with that.
This is what Cathy wrote on the door to his room. Everyone knew it was a joke except for the lady who came around to do a craft project with Mason. She was grateful that his name and city were on the door so she could get to know him better. The poor lady is still confused I think.
Before our favorite nurse left for the day, she got us sprung from our tiny room to one of the nice, big rooms that actually have room to move around and a refrigerator. It sure does make a big difference when your walls aren’t quite so close together. I’ve enjoyed this time with Mason tremendously, but I’m beyond ready to get home to my bed where I can actually sleep without being constantly interrupted by beeping machines or painful screaming. And, I can’t tell you how much I miss Matt and Alli. We have hope that we’ll be able to go home tomorrow if all goes well. We have no hope that we’ll ever get any answers. Still praying for that miracle and trying to remember to be grateful for the little gifts along the way.