cancer – Page 14 – CHASE AWAY CANCER

Ten Thousand Reasons For My Heart To Find…

“Wait here”, the manager said, and we leaned against the wall, all six of us, like a giant line-up. I turned to Chase and whispered: “Are you excited to meet Matt Redman?” and he nodded and grinned as we leaned against the wall in the wait.

I suppose we expected fanfare, or a crowd, or something to herald this amazing artist – but suddenly, humbly and quietly (I didn’t even from which direction he came), he was standing in front of us and there were no handshakes – only hugs. He said he’d heard a lot about us and then he moved down the line of us and greeted each one, learning names and personal details. He met Karsten’s stuffed dog, talked with Darcy about her loom bracelets and their colors, and got on his knees in front of Chase and Aidan and asked them if Spiderman and Batman were in a competition, who would win?

And the craziest, most amazing part of it all? We got to stand in front of Matt Redman, look him in the eye, and try and put into words what the song 10,000 Reasons means to us….

How it underscores every car ride to the hospital…

How it’s floated out of most pre-procedure rooms…

How most of the hematology and oncology staff have been shown the music video at one time or other…

How it was the last thing Chase heard every day as he whispered “I’m so brave” and slipped into unconsciousness on the radiation days…

How every music therapist in the hospital downloaded the chords because they knew if they went to Chase’s room, it’d be the song he’d want to hear…

How it wrapped us up as we’d sit, high about the lake, day after day in the dark cancer days when the fevers wouldn’t break and the cancer cells wouldn’t leave…

Oh how we failed! There are not having enough words, enough good words to put into a few sentences what three years of this song as a soundtrack to our lives has meant. How precious it is to us, and how precious Matt Redman is to us because of it. There have been times and seasons when our hearts were broken and we could not call out, and the only thing that came from us to God were Matt’s words, Matt’s voice in this song as we had none left ourselves. This song has been one of the greatest gifts — until last night when we got the opportunity to try and find the words to tell him of it’s impact.

And how I wish you all could have been with us and watched as Chase sang along to so many of the songs, raised his arms in worship, clapped and cheered, even danced a little. And at the end of the night, before the closing song, the room got quiet as Matt spoke and he told them all about how he’d just met a family and the kids were all “firecrackers” (I mean, did he get us or what?) and that one of the sons had a brain tumor and then, Matt Redman told the room a minute of our story and Chase’s love of the song because – as he said – we were there to worship, but the church is always there to bear each other’s burdens, and we are the church, and as I sat in the hundreds of people, with Chase on my lap, Matt Redman invited the church to bear Chase’s journey with us, as a picture of Chase went up on all the screens, and Chase gasped and exclaimed “That’s me!”. Matt dedicated the song to the Lord, but said they’d sing it with Chase that night, and so we all stood together in this great room with hundreds around us and cried as we sang every word by heart – the way God put things together blew me away yet again.

And on that day when my strength is failing,
The end draws near and my time has come,
Still my soul will sing Your praise unending…
Ten thousand years, and then forevermore.

And all the way home, late into the night, Chase chatted on about “my friend Mr. Matt” and how he loved him and missed him and wanted to give him another hug “…because he sang my song, Mom! He sang my song!”

We are so thankful for this once-in-a-lifetime experience of worship and fellowship…

…moment by moment.

*For more on the ministry and music of Matt Redman, please visit his website here.*

Three Years And A Letter

This is my command—be strong and courageous! Do not be afraid or discouraged. For the Lord your God is with you wherever you go. Joshua 1:9

Friday, July 31, 2015

My Chasey-Bear,

How very far you’ve come! When they first put a name to the giant ball inside your head, the nightmare of it spreading through your skull and down your back, I read that “long term survival” was 3-5 years, and now, here you are: at the three year mark.

I know you don’t like me to even speak about the hospital on the majority of days and it’s okay, we can mostly play on your terms, but today is different. This day in your short history, you were on nobody’s terms and only God himself knew what came next as we learned the unfolding: that you would carry a terminal illness with you the rest of your breath here on earth.

I still remember how small you looked in that first ER bed, how confused your eyes were, and how rosy your cheeks got from all the steroids they pumped in as they tried to save you from yourself before the damage became too great.

I remember holding the oxygen mask to your face and thinking it couldn’t really be happening, and if we were in a movie, that would have been the moment for slow motion and an audible heart beat. Because sometimes life feels like it’s slowly tearing apart.

We’ve given you over to Jesus more times than I can count and held you close even more time than that. Yet here you are, still on your journey, standing smack in the middle of your life road, laughing at anything barreling down on you – and how we love you for your fierce, “you-and-what-army” self.

I know these days turned into years have not been easy for you – and I know “not been easy” is a gross understatement.

None of us know how much further this road continues, but I know if it’s with you – as I’ve known from the first time you kicked inside of me – it will never be dull. And so we’ll just keep at it as we have tried to all along… in His grace, moment by moment.

All our love, my darling survivor,

Daddy and Mama

Your grace abounds in deepest waters. Your sovereign hand will be my guide.
Where feet may fail and fear surrounds me, You’ve never failed and You won’t start now. So I will call upon Your name and keep my eyes above the waves when oceans rise. My soul will rest in Your embrace, for I am Yours and You are mine. ~Oceans, Hillsong United

Of Breathing, Growing, And Being An Ambassador

Sometimes Chase remembers that things change as he grows and sometimes he doesn’t. The last time he had a continuous EEG (the process of monitoring the working of his brain for hours on end), he was newly 4, six months off chemo, and his heart and body were both still deeply hospital weary. He had to be wrapped and held and he screamed the whole time as the wires and goo covered his head, so when I told him on Monday that the time was coming again, he slumped down on the couch next to me. “Mom, stop talking. Please don’t say anything else. I need to breathe. No more talking… I need to breathe in and breathe out right now.” And I sat half laughing and half broken that he’s 5 and yet he’s 107 for all of his experience.

The awkward "can't-climb-into-the-hospital-bed-with-you" snuggle — The awkward “can’t-climb-into-the-hospital-bed-with-you” snuggle

In preparation, we wandered through Target last night and found a new movie and some popcorn because seizures can happen when you go from sleeping to waking and so he had to be able to sleep during the test, and as the kids sat on the old, blue leather couches and munched around giggles at WALL-E, there was another July EEG night on my heart. One when Darcy and Aidan were still too young to stay up terribly late and Bob and I took turns napping and walking a two-year-old Chase around the block and at 10:30, when I simply couldn’t stand anymore Thomas the Tank Engine and decided to put him to bed, he lost his balance and fell, and my stomach turned, but many things can cause a fall and so we went to bed anyway…never knowing that it was less than 48 hours til we’d sleep in an ICU under the shadow of imminent surgery and tragic diagnosis. I always think of that night come each July and it was my turn to breathe in and breathe out and remember that by the grace of God, that night wasn’t a minute past, but nearly three years ago.

This movie night lasted until 11:00 and the EEG day started at 5:00 and in moments like this, grace and coffee are my best friends. By a mile down the road, it was time to find the nearest bathroom just because that’s what happens with 5-year-olds, and as we sat on the Eisenhower in the long lines of traffic, as soon as he saw the top of the Willis Tower, Chase pulled out his iPad and turned on 10,000 Reasons, because sighting the tower means he’s almost there. Three years have nearly passed and this is still how he prepares for a hospital day.

Within minutes, we were there in the familiar rooms again and then came the moment he knew things had changed for he sat completely still while they put 21 brightly colored electrodes all over his skull and the only time he ever got cross was when I tried to make him laugh. And I got to hold his hand and not hold him still.

Chase never relinquishes a fight and it took him until 5 hours into the test to fall asleep and that was 5…long…hours… of sitting in a bed with virtually no radius of movement unless a bathroom was absolutely necessary.

When the test was done, having mercifully lasted only 6.5 hours, he pulled some St. Baldrick’s brochures out of his pack. They had his picture inside, his and Dr. Lulla’s, and to anyone who would stop, he gave a brochure and said “I’m an ambassador.” And even though he doesn’t always give Dr. Lulla the time of day during clinic visits, to any and all who would listen, he would explain and point, saying “This is Dr. Lulla and he’s my favorite doctor in the whole world.” He even stopped a security guard and somehow managed to encourage him to shave his head next year, and it was a precious moment of conversation and meeting, because if I’ve said it once, I’ve said it here a dozen times…this is how Chase rolls. And I wish you could have seen the tall security guard fold down and give tiny Chase a big hug. Those are the good moments to breathe in.

Chase and his “favorite doctor in the whole world”

And now Chase has learned that things change as he grows and what was hard a year ago wasn’t very hard at all anymore, though the sitting still and his mom trying to make him laugh at inopportune moments will probably remain trials for many years to come.

For now we await results. No matter what comes of this, we’ll breathe in, breathe out, and take it…

Moment by moment.

The State of Chase: A Little March Madness

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!" — “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 — 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. — 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…

…moment by moment.

The Story of Three Guys

Once upon a summer time in a city of two towers, three guys named Tim, John, and Enda did well for themselves and decided to give back. But how?

They decided to shave their heads for donations to fund research for kids with cancer and the next annual St. Patrick’s Day party was the perfect time to do it.

March 17, 2000. 17 heads. $17,000. This was the plan and the goal.

They proceeded and instead of reaching their goal, they’d exceed it significantly! Instead of the 17 and 17,000, they’d end up with 19 shaved heads and $104,000.

The party was so successful that they did it again the following year and raised $140,000.

And then the Fall came and the two towers fell in their city and lives and friends were lost in that city, yet the men moved on unshaken in their goal for children.

The next year had 37 events…not 37 heads, but events, and they reached their first $1 million.

Many who shaved were the first responders… the men and women who ran to rescue at the two towers, who run to rescue every day, the men and women who answer the panicked parent calls for the bald cancer children, the men and women who faithfully serve the country… They shaved their heads and stood for kids with cancer on military bases. This is heart and soul worked out with a razor. This takes the hard and sad markings of a disease and turns it from a sign of “other” to one of greatest courage and cause.

These men with this March idea would go on to become an independent foundation and begin funding Fellows – researchers who worked to better treatments and change the future for kids with disease. More fellows and researchers every year. More ideas.

The shaving events continued to grow into the hundreds and the dollars into the tens of millions and the most respected in the nation gathered for a research summit to discuss priorities and goals and quality of life for the littles and in 2012, as the ambulance rushed us in and we heard “There’s a large mass…” and our lives changed forever, this now national foundation, named for the marriage of the worlds “bald” and “St. Patrick’s”, this huge thing born of an idea to give back, it reached $100 million.

And then it gave back as it did every year…this time, the fellows included a young doctor in Chicago who was about to meet Chase and fight for his life. And it became personal.

Each year, the foundation chooses 5 children to be their face and story. Four living and one forever in our hearts – to represent the current truth of the fight that 1 in 5 will not survive. Some of them shave, and some of them can’t…because they have no hair to share. But they all step forward, look the cameras and the papers and the people right in the eyes and say “This is me. This is who I am because of research and the need of it.” Sometimes, the picture painted isn’t pretty, but the children are always beautiful in their struggle and their open hearts.

And so, when your social media blows up in March with donation requests, invitations, and people in bars and on stages, covered in green aprons and crying and shaving and holding loved one’s pictures and hands… This is why. Because almost two decades ago, three guys had an idea.

Around the world, a child is diagnosed with cancer every three minutes. This is our March, our year, and on some level… our life. We invite you to come with us.

I want to help, but I don’t want to shave my head.

I want to shave my head.

I want to learn more about St. Baldrick’s advocacy in Washington.

Why do they focus on pediatric cancer?

[All St. Baldrick’s history courtesy of the St. Baldrick’s website. To read more, click here.]

Tag: cancer

Ten Thousand Reasons For My Heart To Find…

Three Years And A Letter

Of Breathing, Growing, And Being An Ambassador

The State of Chase: A Little March Madness

The Story of Three Guys

Get all the latest news and info sent to your inbox.