In case you’re wondering, it didn’t work. I’m fairly certain at this point that I actually get more sleep when we’re in the hospital. This is clearly not the year I was meant to sleep. Insanely calm is not a way to describe our night with the Thunder Shirt. I had such high hopes.
We’ve officially lived in our new home for a month now. Let me rephrase that. We have had a new address for a month now. Mason and I resided at KU for about a third of that month. We (mostly Matt) have gotten so much done in that time. It’s really starting to feel like home. We’ve gotten to have friends and family over and the kids have enjoyed giving the “grand tour.” Last night we even got to help out some friends by letting them stop over to bathe their sweet girls because their hot water heater went out. We joked and empathized with them about how quickly you wake up taking a cold shower. We said real friends share hot showers. Hold that thought. We’ll revisit.
If you remember, soon after Mason was diagnosed, he started begging for a dog and my co-workers convinced me that every boy needs a dog and my judgment was a bit skewed and I pretty much immediately started the hunt for a dog that could help Mason through his time laid up on crutches. And, if you remember, the perfect dog was ready to join our family and we fell in love immediately. I remember getting the rundown of Jazz’s behaviors from my friend, Gloria, who has reached that glorious time in her life where she and her husband are ready to travel and have found it hard to travel and own a dog. I remember her saying that Jazz wasn’t a fan of thunder and I remember thinking that I really am not either … no big deal! And then we had our first thunder storm as Jazz owners and she was so completely terrified that I basically got no sleep at all that night trying to figure out how to comfort her. She was truly terrified and I remembered that I may not be skilled enough to be a dog owner and that even though you get a dog for your kids, it’s really just another kid for mom to take care of and I felt like we all of the sudden had a newborn baby. But, so many other things have happened since then that I haven’t thought much about Jazz hating thunder, because she is so little work, really. But, here we are on night #3 of THUNDERSTORMS. And, I seriously feel like the exhausted mom of a newborn and it has been ridiculously hard. In the middle of the night last night, I decided to take Jazz downstairs with me to a dark, windowless room so she wouldn’t be able to see the lightning predict each boom and maybe we could get some sleep. It seemed like a good plan, but it failed.
It turns out, however, that it was a good thing we had to be downstairs last night. If not, we wouldn’t have noticed that the carpet was soaking wet this morning. Because, of course, we were getting a little too comfortable in our new home. And, just the night before we joked about cold showers. So, our hot water heater malfunctioned and not only can we not take a shower, but now we have a small pond in our basement. On a typical day, we wouldn’t have found this pond until evening, so thank you, Jazz. And, thank you to our friends who returned the favor and let us use their shower tonight. Because good friends share hot water.
And then there’s this. This thing that has had me smiling in amazement all day. Because only God works like this. After a frustrating morning, a water restoration company finally came to our home at almost noon. All I wanted was normal. Mason was a school and I just wanted to be at work. Crazy as it sounds, I love my job and I miss my friends at work. This man walked through my front door and asked me how I was doing and I wanted to tell him to skip the small talk and get moving so I could just get to work. But then I looked at him and he had the kindest eyes. The kind that seem so deep that you can just stare into them and feel genuine kindness. And I stammered out something to the effect of, “Well, I’ve been better. We’ve only lived here a month, we’ve barely gotten things unpacked, and now this. Oh, and my son has cancer so it’s not like I even get to live here long enough to enjoy our house because we’re always at the hospital.” Great. I seriously just threw out cancer. What am I thinking?
So, we go about the reason for the visit, and the next thing I know, a whole crew of men are bringing in hoses and equipment. And, this man, Brett, with the kind eyes, asks if we can talk. Again, I’m thinking, “I’m already like the worst employee ever. I never go to work anymore and now, on a day that Mason is actually in school, I’m still not working! Just let me get to work!” But, I said, “Sure!” What happened next I will likely never forget. He asked me about Mason. How old, what hospital, what type of cancer, etc. As I talked, he teared up. Those eyes, again. Except, now I was mad because he thought he could just stand there in my living room and cry! I mean, if anyone should get to cry in my living room, it should be me, right? The thing is, when I finished and he started, I found out why he was crying. This man did not show up on my doorstep by chance today. This meeting, this crappy hot water mess, this day was written long before now. Brett has a story – probably one of the most inspiring, compelling stories I’ve ever heard. He’s overcome hardship after hardship and he’s using his life to help others. He was never supposed to walk and yet he played every sport imaginable. He was abandoned, abused, momentarily rich, and also homeless for awhile. He was born with a severe club foot that the doctor almost cut off – and no fibula (the bone Mason will no longer have after surgery). He has had cancer hit his family time and time again and he hasn’t let any of this be a negative in his life. He has a foundation called Destination: Inspire. And guess what that foundation raises money for?
And, guess what hospital his foundation is currently raising funds for?
Crazy. Mind blown. Oh. Em. Gee.
So, there are 26 beds on the peds floor of KU and I believe about 3/4 of them are cancer patients. That leaves you with 20 patients that Brett is riding his bike hundreds of miles across entire states to raise money for. And, he walked into one of those 20 homes today. And, he’s been where we’ve been. He understands what it’s like to live in a hospital as a child. He gets it. And, we stood in my living room for 30 minutes and talked. And, he told me some of the things his foundation has accomplished and I told him that he, of all people should sleep so well at night knowing he’s done so much good. This man loves God and serves Him so well. And, before I finally left for work, he took off his silicone bracelet and I took mine off and we traded. Because, he wanted Mason to have the one he was wearing that had traveled over 2000 miles on his bike. And I wanted him to pray for Mason, because clearly God is using him.
And then, I went to work and I told all of my people about how crazy God worked today. And, on my way home, I stopped at the vet and spent the best $40 ever. Jazz is now the owner of a Thunder Vest – and guess what?! It is thundering this very minute and she is sound asleep. And, I should be too, but I just have to get my words out!
I have to share one last thought that I can’t stop thinking this week. I was in TJ Maxx looking for the perfect something to fill the walls of our new home and I found a picture that said something similar to this.
I read this twice and then I was sad. I couldn’t help but realize that this was supposed to be inspiring. But, it’s so wrong. Psalm 139 clearly tells us our days are already written. They are written in perfection. And, we must trust Him.
Please keep us in your prayers. We go back to the hospital on Thursday and will be there for about a month straight because of testing and surgery along with the chemo schedule. Pray for endurance and ways to connect as a family living in two places. Pray for good days and few side effects.
Because I forgot to blog Saturday’s big event…I’ve copied my Facebook post below. It pretty much sums it up. We are still so happy thinking about the goodness of that day.
Today will forever be remembered as a day that God orchestrated in perfection that is only in Him. We were surrounded by so many people we love in the sunny parking lot of our little white church full of people with the biggest servant hearts. We were reminded that God has been preparing us for a time such as this. We were humbled and amazed and we laughed and cried and hugged all day long. We had more conversations today than we would normally have in a month. We felt genuine support in every possible way. We made new friends and reconnected with old friends. Everyone should feel what we felt today (minus the cancer part) – where all of your people come together from all parts of your life and love you well. So many people helped make today possible. Thank you is so very insufficient. Rachel, you’re brilliant and wonderful. You truly listened when I was beyond frustrated and knew I wasn’t kidding when I said I wanted to break things. You not only turned my frustrations into a way to pay for medical bills, but also provided this amazing day be with all of the people we love. You have no idea how happy it made me to throw that pastel, porcelain basket (Thanks, Mel!) I could’ve stood there all day and thrown things. Melanie, Mayela, Andrea, and Chrystan – just plain amazing. I love you all. The 5 of you made the best team ever. You all complimented each other so well and I’m totally jealous of all of the time you all spent together on our behalf because I know I would’ve loved being with you.
Our Dream Team ❤️❤️❤️❤️❤️
THANK YOU to everyone who showed up and helped out. I didn’t get a ton of pictures, but I did get a few to share. #PrayforMason
Autumn and Mason 💙 They decided in Kindergarten they were getting married someday and they still both agree. They’ve been dating longer than some people stay married. 😂
I don’t even have words for this picture. Seriously. Not only did Mason’s favorite nurse surprise him by coming, she took pies to the face and had a shirt made just for him. The bond these two have is just unbelievable. Best. Nurse. Ever.
I love that he picked a pretty green plate to smash. Do you think the neighbors would mind if we moved this to our backyard?
Everyone needs people they can be fully honest with even when it’s so ugly it hurts. These are some of mine.
Alli’s version of pie in the face was much gentler than Mason’s. This is Alli with her principal, barely touching her face and then apologizing as she helped wipe it off. Mason was more like smash and twist until all cool whip made its way out!
Mason and one of his brave teachers who took many pies in the face for him. 💙
Mason and a few of his classmates. Yes, they’re all the same age. 😳
Aggressions released with my girl. I’m not sure which one of us needed it more. Ahhhh!
I’m so blessed to be his mom. 💙
When your first-ever bestie comes to visit and life has been incredibly hard since you last saw her, this is what happens when it’s time for her to leave. 😔💗💗
This is the plate that Matt launched in action ready to smash cancer!
Eighty percent. It’s all I can think about.
Eighty percent has never been good enough for me. I was one of those kids in high school who really cared about her grades – maybe a little too much at times. I was never the smartest, but I graduated in the top ten of my class because I was so competitive. I can’t tell you how many times my friend Michael and I would razz each other about getting one or two percent lower than the other. I was lucky to be surrounded by high achieving friends who pushed me to do better. I’ll never forget the A- in Geography that dropped me down by 3 whole spots in class rank as a senior. If you know me, you know I was lucky to pull out an A- in Geography of all classes.
When I see an 80%, I see 1% higher than a C. And, everyone knows C’s suck. Cancer sucks too. It’s been another hard week with pockets of goodness that have kept us going.
Because when I try to sleep (like right now at 1 am) my mind doesn’t ever stop spinning, I composed an email earlier this week to Mason’s oncologist. I asked all of the questions that I would like to ask him in person, but can’t, because Mason is always with me. I can’t help but feel bad for this man. I can’t imagine a profession where you have to deal with the toughest questions from sad, terrified moms on a daily basis. The day after that email, I got a phone call from one of his nurse practitioners whom I really have grown to like a lot. She didn’t answer one single question from my email, but she assured me Dr. Smith would be calling me soon and then she sat and listened as I cried big, ugly tears. She reminded me that I have to take care of me and be surrounded by people who can listen and understand all of the feelings of a mom with a child who has cancer. Then she reminded me that no one around me will really get it and that’s ok too because thank God they’ve never been there, right? I remembered again that I don’t necessarily need to be surrounded by people who get it, I just need people who are willing to listen and try to understand. People who expect real answers to, “How are you?” and don’t accept words like “fine” or “hanging in there.” Sometimes it actually feels nice to have someone cry along with me as silly as that sounds. But, just for the record, it does NOT help anyone in my shoes to be told about your grandpa or husband’s uncle who died of cancer. And it does NOT help to have to console someone else while they cry because they miss said husband’s uncle who died in 1992. If you’re going to cry around a cancer mom, you better be crying with her, not needing her to be your support.
Dr. Smith called me later that same day. He started by asking how Mason was doing and I explained to him that in the 4 days since he’d been home from the hospital, he had yet to keep one single bite of food down even though he was extremely hungry. I explained to him that Cisplatin had once again ripped every ounce of energy and out of my child. And that basically the only way he was keeping any fluids down was through our daily saline flushes in his lines. And then I promised to do every single thing he asked in order to stay away from the cancer center because Mason wanted nothing more than to be home and go to school like a normal kid.
Then he said he received my email. He took a deep breath and we had to talk about things like survival rates and chances of amputation and the fact that all of this is just a big fat guess because again, NO ONE has ever seen osteosarcoma presented this way. Because I needed answers. I needed concrete numbers to process and I needed exact dates of when we were going to see if all of this pain and misery that Mason is going through is even worth it. No, amputation is not in our current plans at all right now, but there is always a chance when you’re dealing with tumors in a limb. No, amputation would not leave Mason in the clear as it would likely show up somewhere else without chemo. And, NO, Mason doesn’t know this is even an option and he will NOT unless necessary. And, YES, I never thought I’d ever have the need to say this, but I’d much rather that than to lose him.
Before we found out that the cancer had metastasized, we were told there was a 90% chance of cure with proper treatment. Then I just happened across an article on the American Cancer Society’s website. (Everyone reads cancer articles in their spare time, right?) And this is what I found. “If the osteosarcoma has already spread when it is first found, the 5-year survival rate is about 15% to 30%.” So we just went from a B to an F and I can’t even process that. I still can’t. But, according to Dr. Smith, it’s really 80%. I don’t really know who to believe or what to think. I do know that only God knows and the story has already been written. And, I know that when I see 80%, I now really see 20% or 1 in 5 and I lose my mind a little more each time I think about it. 80% has never been good enough and now I feel like I’m in high school again where every single percent matters so much because I have to win the competition. But, now almost 20 years later, I REALLY have to win this.
Mason will have every scan imaginable (full body bone scan, chest CT, MRI, x-rays, and PET scan over a two-day period May 3-4 if all goes as planned. This will be huge in determining how we proceed. Please pray that the tumors are shrinking in a big way. Also pray for my sweet girl. People seem to ha e forgotten that her world has been turned upside down. That will be a blog for the future. For now, pray that she will be supported in ways we can’t even imagine. Pray that she will have grace upon grace extended to her. Pray that she knows how much she is loved.
Today is April 8th. We’ve been in the hospital 6 of the 8 days so far this month. People ask how we like our new home and we don’t really know how to answer. Our new home is the hospital I think. We are ready for a break. Thankfully, if all goes well, we will get to go home tomorrow only to come back Sunday for a shot. Then we will have two full weeks of no chemo. Hallelujah! But, the isolation will begin in a few days as this is the round that makes his counts drop. We are praying that it’s not like last time where he was sick the entire two weeks. Last time he ended up sick and in the hospital or cancer center about a week of the two week break.
This is week 6 and he has handled the AP so much better than he did on week 1. Yesterday he felt great! He ate, drank, laughed, made 5 different craft projects, did some school work, and tormented the nurses. His favorite nurse, Cathy, was here and he loved every minute of it. Days like that I am in awe of how much he thrives here. There are parts of his personality that I only see on his good days at the hospital. Many times when he opens his mouth, I brace myself for what will come out. He doesn’t skip a beat and loves getting to know the nurses and what makes them tick (or annoys them). Last week, as he is asked a million times in a day, his nurse asked, “Can I get you anything?” His response horrified me! He said, “Yeah, a new personality…for you!” 😳 Oh. My. Gosh. Seriously. I did not raise a disrespectful child!!! Luckily, these nurses have great personalities and senses of humor. When she asked why, he said, “Because you don’t like the Chiefs.” This nurse, who he likes a lot but won’t admit when she’s around, loves the Broncos. So, he purposely wears Chiefs shirts and hats when she’s his nurse. Sometimes his vocabulary needs a little tweaking. 😬
Today, however, was not one of those days. Today I’ve spent a good amount of time holding the bucket and wiping vomit from his mouth. Today he’s been in bed more than not. Days like today are hard. He tells me I should never have signed papers to let them poison him and he begs me not to make him take his medicine. Most of it is intravenous, but today alone he took 23 pills. I so wish I could swallow them for him. And, many times I question whether I should have signed those papers. But then I close my eyes and picture him not here with us and I take a deep breath and tell him for the hundredth time that it was our only choice and how much we love him. I know God has us here for a reason. But, right now I’m not happy about it.
We are back in the hospital for another round of chemo. For those of you who have asked how many rounds/how often, I’ll try to explain. Or, you can just decode this map. 😉
Ironically, the chemotherapy Mason is getting is actually called MAP therapy, an acronym for the drugs used for osteosarcoma. Each Thursday starts a new week. Today started week 5 and is the 2nd week of 3 in a row. So, we are in the hospital for 4-5 days, home for 2-3, repeat, repeat. Each cycle is 5 weeks and in that time, he has chemo on weeks 1, 4, and 5. The drugs he gets on week one are the hardest on him. This is why he needs 2 weeks of recovery in between. This is also the round that makes his white blood count dangerously low. There is constant nausea, vomiting, and fatigue with all of it. He generally either feels hungry, but doesn’t feel like eating anything or the thought of food makes him want to vomit. There have probably been 5 or 6 good days since chemo started. Today was actually one of them, until the high dose methotrexate was pumped into him. He and I spent a couple of hours in the pediatric craft room using all kinds of fun duct tape to make a Star Wars worthy satchel and light sabers. We also played hangman, talked Legos, giggled through a funny movie, and shared some chicken tenders for lunch. His favorite nurse was here today and their banter was hilarious. She actually cheered as he walked into the unit this morning because it has been so long since their schedules have meshed. Today almost felt like a normal day, minus the living in the hospital part. But, in the blink of an eye, my healthy, hilarious boy turned into a weak, pale, sick boy. His hair is almost completely gone and he’s taking more pills in a day than most elderly people. It’s so hard to put him through this. I want so badly to know if it’s working and worth the misery, but we won’t have new scans for roughly another month.
Today, he had another echocardiogram to make sure that the drugs haven’t decreased his heart function. It still looks good. Thank God. His oncologist also came in to take another look at his birthmark. From the beginning, there was question of his birthmark being a bone tumor indicator. It was initially ruled out, but now the birthmark seems to be changing, causing some new questions – as if there aren’t enough questions with his case. He’s literally had this mark since birth. It’s hard to think that we have missed something so crucial for over 9 years. It’s like God gave us a sign at birth and we totally missed it, so He threw some roofing tin in his path and said, “Maybe that’ll wake them up!” I NEVER wanted to be a nurse or do anything in the medical field. Now I feel like I am a nurse and wish I had the education to go along with the daily tasks. Maybe then I would have known enough to take my baby with the brown birthmark on his leg to specialist after specialist until I got some answers. But, that wasn’t in our plan. And, if I had known then that this path was in our plan, I’m not sure I could’ve made it to today. This is definitely harder than the hard that I imagined. Never in a million years did I think this would be our struggle.
Pray for more good days than bad. Pray that the chemo is working. Pray for the unity of our family as it is so hard to live in separate places.