Holding life with open hands… all these metaphors and so many more come to mind (and have come to life on these pages) as I consider another MRI in the morning.
By my very rough count, Chase has lay in “the tube” and been scanned over 20 times, and on the one hand, preparing for the experience feels almost as routine as running to the store for milk, and on the other… well, really, reallynot routine.
Chase stayed home from church today in order to protect him from any germs that might interfere with sedation tomorrow and for a minute, we sat in the sun on the back porch with the blooming trees all around us and I asked him what to write and what he’d want to say. He shrugged and said “I don’t need to say anything. You can say it, Mom. Just write about cancer and my baseball and the MRI – that I would be brave and not be afraid.” So there it is… Please pray for Chase to be brave and not be afraid as he goes in tomorrow.
Despite all the experience, tomorrow will still be a first. At the suggestion of his doctors, to reduce stress and the hours spent with no food or water, we are going to attempt an MRI at an outpatient facility (his first full scan not done in the hospital), using sedation instead of general anesthesia. Our hope and prayer is that his little body will take to the new medicines well and that he’ll be able to fall into a deep sleep and stay there for upwards of two hours. We were told that there are only a small percentage of children who don’t take well to the procedure and need to be transferred back to the main hospital for future scans, but as ATRT parents, we eat “small percentage” for breakfast every morning, so it really didn’t come across quite as comforting as we know the nurse meant it to be. Also, it’s Chase… 🙂
So, as always, we go forward …
Moment by moment.
For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope. Jeremiah 29:11
Our dear friend John teaches Chase’s class at our church and is an amazing runner. He stopped by to see us and gift Chase with the first medal from his first marathon many years ago and this coming Monday, as Chase lays in the MRI machine, John will be on the ground in Boston, running the 2015 marathon. We are so proud of him and are so humbled that he does this in honor of Chase.
“There’s a cloud of witnesses, the ones who’ve run this race, and even louder than my fears they’re crying; ‘Warrior, lift your face, and keep running, keep runnin’, don’t lose hope, don’t you give up now, don’t turn around, you’ve got to find a way to just keep reaching, keep fighting, the pain does not compare to the reward that will be yours, that waits in store for those who just keep running.” A Pilgrim’s Progress, Matt Papa
As many of you know, after months of every six-week-scans, Chase was granted a three month reprieve which will be up in a few short weeks. March has been an amazing, breath-taking month and we’ve been honored to be a part of several St. Baldrick’s and Lurie events already this year.
“Take a survivor picture of me, Mom!”
One of our favorite events has been visiting schools in our district for shave events. Watching children donate their hair for other children takes my breath away. There is no guile, just love and caring with the greatest commitment. The first school we visited, Chase had determined to say something but in the face of the entire student body, staff, and parents, he decided to stay quiet. I can’t blame him – I was a little terrified too. However, last week, at our final event for March, he opted to speak and in a gym full of children, staff, and parents, he found words about St. Baldrick’s being a special thing…and then, simply, this tiny 5-year-old with a microphone in his hands voiced the best words: “Thank you.”
Talking about St. Baldrick’s at Madison Elementary
In some ways, March has really been a month about hair. We’ve had the shaving events including Aidan’s shaving, and for the first time, Chase spoke about not having his. It was “crazy hair night” in the kid’s church programs and while Aid’s full, thick hair easily stood on end with a little gel and styling, when Chase asked for the same style, he expected the same look, and instead, he looked a little like Baby Jack-Jack from the Incredibles – with a single tuft of hair off the crown of his head. We all thought he looked awesome. We all thought he knew. It wasn’t until that night, as he looked in the mirror, that he fully voiced and realized his difference in this area. “I want my hair to look like Aidan’s! It doesn’t work! [he smacked his head with the palm of his hand] It’s just my same, stupid baseball. Don’t talk to me about it right now. I’m very angry.” This was the first time Bob and I have ever heard Chase voice discontent with his differences. It was both heartbreaking and impactful for us as moments like this one reiterate that we made huge medical decisions which will never stop greatly effecting his daily life.
It was during these same weeks that I received an email from Chase’s school about hair. Kids in his class were beginning to ask more questions about Chase and why he didn’t have hair like them, so, last week, we went into the school with a program designed to educate and answer questions and the woman read a story about a boy named Billy, and she brought a bald doll on whom all the children practiced cleaning central lines, and then Chase got up and showed his class some pictures – pictures you all know by heart – of Dr. Lulla and surgery days and hospital days, and he explained each one in his own way and the kids sat and listened. And then, because they’re five and they’re wonderful, they fixated on Chase getting to do special things in the hospital and when we reminded them that hospitals try and make it special because Chase couldn’t do “normal” things like swim and be outside when he was having chemo, it reminded them how much they all like to swim and be outside and though it turned out a little like nailing jello to a wall, it was precious and real because Chase stood up in front of them and talked about a part of who he was and is.
Chase and Chelsea -from Welness House- work with a chemo doll and Chemo Duck to talk to Chase’s class about cancer life.
Courtesy of Lurie Children’s and LaSalle Bank, March also brought another first for Chase: a Chicago Bulls game. I wish you all could have been there the minute he stepped into the crowd on the edge of the box and took in the fullness as a visiting choir sang the national anthem, sound and song echoing off the rafters as the lights glowed around. He’s learned how to wear a hat to cover his ears which greatly decreases his over-stimulation and helps him enjoy large, loud moments and his eyes were huge and awe-filled as he turned and screamed “This is awesome!”.
It was also during this time that Chase lost a cancer friend. They only met a handful of times, but Rusty and his family have always gone before us and encouraged us so. And that losing season brought up lots of questions for him again. One afternoon, the day before Rusty passed, Chase “composed” a message to him on the computer and then we sat on the couch and talked and he asked if he was going to die soon too because he has cancer and chemo and talks to Dr. Lulla like Rusty. Some day, I will write about this conversation, but today, I can’t. There were lots of tears that day – for us, for Rusty, for this broken world – but there was also joy in talking through this not being the end. To be able to speak about these things was bittersweet and we count ourselves beyond blessed to have known Rusty and been encouraged by his story.
Early morning checking in on Rusty via Facebook
Finally, this March time has been an up and down time with some anxiety as Chase has had some health issues that we’ve been monitoring. He’s complained of headaches and frequent stomach aches, failed his eye exam, and then, started tripping and falling quite a bit. It became apparent within a few days that he had an issue with his ear, and while that has now cleared up and he seems more steady most of the time, we continue to watch his sleep patterns, appetite, and speech, as he hasn’t been himself at times – to the point of effecting his school schedule. All of these symptoms can be normal, or they can be very not normal. Which is both comforting and deeply terrifying because we never know when he can’t remember his birthday if it’s because he’s five or because he has cancer. We know that the MRI is soon and that if it’s a cancer concern, his symptoms will become more apparent. And so, as always, we wait…one part scoffing at how silly and over-concerned we feel, and one part with the silent “what if?” question.
But for today, in this moment, he’s fine. In fact, I recently found him hiding under the desk in the living room with his father’s electric razor trying to give himself an even more bald head. So, we close this crazy month and look forward to more Spring and the weekend celebration that life is ours and death has no hold, and we take each breathing day…
“End? No, the journey doesn’t end here. Death is just another path, one that we all must take. The grey rain-curtain of this world rolls back, and all turns to silver glass, and then you see it… White shores, and beyond, a far green country under a swift sunrise.”
Her face literally glowed with her peaceful smile as she looked up at me. It was the first week in the radiation center in the late Fall of 2012 and I’d fallen into treatment routine, into exhaustion, and honestly, into a sense of self-pity that Chase’s diagnosis was one of the worst I’d heard of at that time.
And then I met this woman. She was petite, energetic, had the biggest smile, and was waiting for her son. She sat folded into a kid’s chair in the play room while her older daughter danced across the room doing math facts on the white board and checking in to make sure she got it right. As the blond girl and the math facts moved around us, this woman with the peaceful smile would tell me that her son had a cancer with no cure. They knew it from the beginning: every treatment was but a buyer of time. And as I worked to accept the words that came from her mouth, she spoke of knowing True Peace and making the most of what they were given. In her own words, describing the same moment by moment refrain that I was coming to know. She’d gone before me, into harder places, and her wisdom held me up in those first weeks and new treatments.
Within a month, I’d stand in the radiation center and cheer on her darling son as he graduated. Bald and emaciated with his “radiation tan”, he got his coin and his certificate and he was done. As I watched him stand there, I was so encouraged that Chase would soon be done. Rusty had gone before us that way and seemed to say “Hey, this can be done.“
And then the good news came as Chase finished radiation the following month. A reprieve had been granted and Rusty’s health was strong.
Our families saw each other rarely even as we shared some doctors and hospital floors. But this is the strange bonding of cancer. People may be different as night and day or live in far away places and yet, in unusual ways, we become brothers, sisters and neighbors because of the halls of a children’s oncology ward. One time, while Chase lay too weak to rise and the central line bled out (again), Rusty was being prepared for hearing assistance and he made a special trip upstairs with a picture he’d colored just to cheer Chase up. He stood by Chase’s bed and as he had done at radiation, he seemed to go before and say “Hey, this can be done”. His hair was back and his color was good and I hoped Chase would look like that some day soon.
Time passed as Chase would scan and clinic and then Rusty would scan and clinic and over and over again, the hope and faith of this family rushed over us in encouragement like water on parched ground. They went before us and proved God faithful in so many ways.
Then the summer came and with it, news. The cancer was back for Rusty. We were all together at a hospital function and it was beautiful. But at times like that, there are no words.
Then the holidays came and the news of hospice came and we held our breath – not now, please not now at this season – as if praying this would make any other time less awful. Yet Rusty pushed back and lived greater and bigger still. He walked when they said no more and he ran and he played and his joy and strength – the whole family’s joy and strength – was larger than life. And one frozen winter Sunday, we watched our computer screens in awe, tears streaming down our faces as the video showed his father gently lifting him into the water and laying him in under the words “I baptize you in the name of the Father, the son, Jesus, and the Holy Spirit”. He publicly identified with The One who has always gone before.
And now, we’ve read that the time is near. We’ve read that his body grows weary, but we’ve also heard that he’s ready. And soon, he’ll go before us yet again…
Please pray for this family.
“Man, I cannot wait to see the baseball field. I bet I can hit a home run on heaven’s field.” Rusty, age 7
For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers,nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord. Romans 8:38-39
-MbM-
Because who wouldn’t be encouraged by the Chicago Blackhawks? – Rusty and Chase in May, 2013
