All four of us are finally home under our new roof! Mason is feeling great. We only have a few days until we go back again so we plan to make the most of it. Thank you for your prayers. This is such a trying time for our family.
It’s Good Friday. It doesn’t feel like a good day, really. But, then, neither did the day that Jesus was crucified. I pray that the bad of today is necessary for the good in the months to come.
Yesterday morning, Matt closed on our new home at the same time that my dad brought Mason and I back to KU for round two of eighteen. Even though round two just started, we’ve been in the hospital more days than not this month. We didn’t even get to spend the first night in our new home as a family. If we’re lucky, we’ll get to go home Easter evening.
It’s such a weird time. There is good and bad and so much going on that we are just plain weary and overwhelmed. So many people showed up in our front yard(s) to help us load and unload the moving trailers. I’d say 85% of them were from our church. I can’t even describe to you how proud I am to say that we are members of Providence Baptist Church. Friends, co-workers, and family helped too. People deep cleaned in places I wouldn’t have even thought to clean, working tirelessly to remove all bacteria present in order for Mason to be able to come home to a safe environment. People came and put my kitchen together, set up our furniture, and brought food and flowers. The burden of this difficult time was shared by so many. We’re so grateful.
I could write thank-you’s for weeks and still not thank all of the people necessary. I haven’t written one single thank you. Not one. No words seem sufficient. I feel awful and I can hardly focus on any task, much less a pile of thank-you cards. I honestly don’t feel like myself at all anymore or even remember what that should feel like. I’m in a fog of exhaustion and anxiety. Conversations are difficult to complete and anytime I’m with one child, I feel like I should be there for the other. I miss my husband and I miss normal. I’m resisting this new way of life probably more than I should. I haven’t written for a while because I’ve quickly learned that people don’t like to read the ugly. When I am discouraged, I’m told to hang in there, be strong for Mason, or keep the faith. These are things I would’ve once said, too. But, I don’t find any of them comforting or helpful. I’m not exactly sure what I want to hear. I guess I mostly want to be heard and understood. But, I know there is no way to understand something you haven’t been through. And, I pray that you never have to understand.
I belong to an online group of other moms who have kids with cancer. I resisted that for quite some as I didn’t want to be one of them. But, slowly I’ve started to gain comfort in knowing that others have the same feelings and are going through similar situations. Some days I can hardly read the posts because it hurts too much or brings up something I haven’t even realized we will soon face. Today I was reading about how relationships with friends and family change when your child has cancer. It was heartbreaking. Everyone agreed that in the beginning, there was an abundance of support. But, the few people that remain supportive in the end will surprise you. I can’t let myself even go there to wonder who we’ll lose along the way because it’s just too much. Right now, in this moment, I can’t imagine more people coming alongside us in this journey. I have found that people I wasn’t super close to before have become steady support. And, I’ve found that friends and family whom I thought would be in my inner circle have yet to have one single conversation since diagnosis. I get it, but it hurts.
As hard as all of this is, I do have faith. I know that my cries are being heard and I know that there is a purpose much larger for Mason’s suffering. I know that if I knew the plan I wouldn’t believe in a very mighty God. I know that He will carry us through even on the darkest days. And, I praise Him for the blessings he has given us. I praise Him that Mason danced a little jig while pulling his IV pole to the bathroom before bed tonight. And, even though I couldn’t be at our Good Friday service at church tonight like I wanted to be, I can still get on my knees and thank Him for His perfect sacrifice.
This week has been the hardest by far since this journey began. I’ve lost track of what day it is repeatedly because it has been an hour-by-hour survival kind of time. It’s late Saturday night into Sunday morning as I write this and Mason has been here at the hospital since Thursday morning at 7am. Thursday started with a 5-hour wait to get into surgery to put in a new double lumen Hickman catheter so chemotherapy could begin. Mason is fairly certain he understood the doctor to say that the surgery before his lasted 7 hours as he drifted off into happy land before surgery. He also told me he was dead and alive at the same time and that his computer just eats normal food. So, we must take his announcements with the grain of salt when there is a lot of anesthesia involved. But, we are guessing that’s why there was such a delay and how can you possibly be mad about that? Thursday was rough in several ways. I ate some of the daily special from the hospital cafeteria – chicken breast covered in a lovely asparagus sauce that nicely disguised he fact that it was RAW. Minutes after biting into the chicken, we got a phone call from one of the surgical residents letting us know that they had given us the wrong consent form to sign prior to surgery. At this point we had thought surgery was well under way. There was a brief moment of OH CRAP! We immediately thought maybe they were doing a different surgery on Mason. It’s amazing how quickly your mind can move through all of the possibilities in a moment like that! We found out that they really do read all of those papers we sign before cutting. In the end, it just boiled down to another delay. He came out of surgery with all of the parts he went in with — relief!
I’ve also lost track of how many times he’s been under anesthesia now. I’m too sleep deprived to even try to recall. But, we’ve come a long way since the frustrations of hospital staff forgetting that Mason is only 9 (even though he looks like he’s 12) and not getting us back to the recovery room until the point where Mason is terrified waking up without us there and wondering what went wrong. We’ve got it down to a fine art at this point. It’s a team effort. Matt and I remind anyone who will listen prior to surgery that we want to be with him as soon as he’s stable. We literally say this to 5-10 people each time during prep. Then, Mason knows that when he is coming out of anesthesia and the least bit with it, he needs to say, “I want my mom and dad!” Either all of this works, or it’s the all caps somewhere in his chart that says “YOU DO NOT WANT TO SEE THE CRAZY ON THIS MOM YOU IF YOU DON’T LET HER SEE HER CHILD!” So, we were able to get to him before he was scared and help him wake up fully. He recovered quickly and was starving soon after surgery. He did so well that day. He didn’t complain once that he was hungry before surgery, even having to wait the extra five hours. He had to skip breakfast and lunch and didn’t say a word. I had snuck a breakfast bar and was still starving!
The bad thing about having surgery the same day that you start chemo is that you can’t eat or drink before surgery, so you’re bound to be at least a little dehydrated. And, as we’re learning, chemo treatments can’t start until your urine has reached a high level of dilution. Because of all of the delays earlier in the day, it took quite a while for him to get enough fluids in him to start chemo. He was finally able to start at 9pm. At that point, we’d been in the hospital for 14 hours and he was beat. Matt was already home with Alli and it was just Mason and me. I will never forget that evening.
Mason, with his bright, healthy eyes and pink cheeks went from building Star Wars Legos and making jokes to a very sick child in a matter of minutes. He almost immediately lost color in his face and grew dark circles under his eyes. The sparkle in his eye and the sarcasm in his voice was gone just like that. I sat beside him almost paralyzed by the sound of the constant drip of poison into his chest. There was not one thing I could do besides watch it happen. I felt so helpless as the one who is supposed to keep him safe. Moms keep their kids safe. It’s what we do. Every decision we make weighs the safety of our children. And, here I sat having signed all of the papers necessary to pour poison into my child. This stuff is so harmful that even the nurses have to put on special protective disposable gear in order to hang the bag on the IV. The doctors and nurses actually refer to chemo drugs as poison in general conversation. All I could think is what have I done and how is this really happening. You’d think at this point, daily life would be less surreal, but it’s just not. I still feel like I’m looking into someone else’s life or like I’ll soon wake up from a horrible nightmare.
Thursday overnight was probably the roughest night in a hospital to date. It’s almost impossible to sleep in hospitals anyway because of the constant checks and beeping. Plus, we’re on the peds floor. There are always screams and cries 24/7 from either babies or big kids who are going through what I can only describe as torture based on the sounds I hear. It’s kind of like when you become a new mom and you read all of the books and magazines that teach you that good moms should always be able to tell what kind of cry their baby is crying – hunger, pain, gas, fear, boredom. I thought of myself as a decent mother of babies (except for the 2 months that Alli cried liked clockwork every single night for 4-5 hours) and yet I never got all of the cries down. But, I did get the pain cry figured out. It’s very distinct and urgent, not to mention excruciating to hear. That’s the kind of scream/cry I hear here on a regular basis. Oh, and my poor excuse for a bed doesn’t lead to much sleep either. But, the main reason it was such a horrible night is because Mason had to pee every 5-10 minutes all night long. I’m not exaggerating one single bit. They push so many fluids through his body along with the chemo that it’s constant. I’ve never seen so much urine in my life. He didn’t sleep and neither did I. It was a rough way to lead into Friday, the first full day of chemo.
Friday and Saturday were miserable. We could count the bites he took on one hand each day. Smells became a huge issue for him. I resorted to eating my meals in the bathroom to be as far away from him as possible and still there for him at the same time. Friday night, Matt actually stayed in the hospital and gave me a chance to sleep in a real bed without interruptions. Saturday morning as I was leaving Alli’s middle school choir contest, my phone rang.
Mason: hh..ii..ii (moan)
Me: Hi buddy! How are you?
Mason: gooood (another moan)
Me: You’re not good. Don’t lie. Are you wanting me to come to the hospital?
He’d finally thrown up and was just plain miserable. Just as I was ready to pull out of the garage, my parents got there and ended up taking me to the hospital (awesome, because I hate the drive…way too much big city driving for me). When we got to his room, he wanted dark and quiet and to hold my hand. It is just heartbreaking seeing him like that. Luckily, the nausea tends to come in waves and isn’t constant. He was like this off and on all day. Then, at 9pm, when his final bag of chemo had dripped dry, it was almost instant again. He started feeling hungry and getting color back and the next thing I know, he’s eating everything in sight. I’m watching every bite telling him to slow down and keeping a close eye on the puke tub. All the while, I’m smiling, because this is the kid I know. He’s sleeping now and I should be too, but this place! It’s loud and uncomfortable and I hate that it’s our second home. My prayer for the night is that 1) his condom catheter stays on (Thank you for making me request this, Amanda!) so he doesn’t need help collecting urine all night long. 2) He feels like himself tomorrow and we can go HOME!
To be fair, we’ve had a lot of good balance out the crappy the past few days as well. Here is some of the good, because you really don’t want to see pictures of the crappy.
The day before chemo started, we surprised the kids by picking them up from school and heading to LegoLand. We had a great day as a family and were pleasantly surprised by how cool that place was!
On Friday, Mason received this amazing box on our doorstep. Yep, straight from Surprise, AZ, an official Royals Spring Training hat signed by Luke Hochevar and Alex Gordon with the message “God Bless”. A huge thank you to the Burrows for making this fun surprise happen!
How do you tell your kids that life is about to change for the worse – that we finally know for sure that what we’ve been praying to avoid all along is becoming reality? How do you hold it together and parent well when you really want to go far away and cry and scream and punch things until the pain goes away?
Chemo starts Thursday. I’d do anything to change this.