You’ll have the opportunity to support St. Baldrick’s funding of clinical trials and directly impact the health and lives of kids (like Chase) who are battling cancer. (plus…hang out with me, of course!)
Chase settled a little further into his pillow as I tucked the sheets up under his chin, just the way he liked it. He had been laughing a second earlier and it suddenly changed to a whimper. “I’m scared . . .”
I tousled the fuzzy hair on his smooth head, “It’s going to be okay, sweet boy.”
He twisted slightly in the sheets as if trying to physically escape a thought. “But Mom, what if I go to sleep and I don’t wake up?”
I hugged him close and promised him that wouldn’t happen – not because I knew it to be true, but because I desperately prayed it so. How the old soul questions from a young body twist at my heart and mind.
It takes four people to hold and distract Chase while the needle is placed in his arm.
Twelve too short hours later, after fourteen hours of fasting and four attempts to place an IV in his under-hydrated veins, he fought the medication as it sought to take hold, pulling his head off the hospital bed to draw breath against the impending sleep even to the point that he nearly choked. His eyes closed and he fought them open once again. His voice was a hushed whisper as if even opening his lips to form words took too much energy. “Mom, I’m going to miss you. Will you come back to me?” The fear in his eyes was still visible in the blank glaze of the pre-anesthesia prescriptions. And then his chest heaved in a gigantic sigh, and he surrendered. And I stood in the bay next to Bob, watching nurses and doctors prepare to load his small body into the colossal machine until the automated entrance door closed, separating all of us once again.
We don’t like needles . . .
Yet another MRI . . .
Today marked Chase’s first MRI in four months and the first one since his diagnosis that I haven’t posted about before it occurred. It was traumatic as it always is and for a moment after the holidays and the busyness and burnout, I lost the ability and desire to put it into words. At some point, it feels like we run out of new ways to say “this is hard” and “please pray”. Every time he passes out and we’re left standing in a room, every last time we say goodbye, it tears at my heart and the weeping soul cry of it all is that we weren’t meant for these kind of things.
It’s hard now, and it’ll probably be equally difficult when we do it all again in three or four months or possibly sooner with an impending eye surgery. And wow, is my weakness and lack of faith on the surface in these moments when I stand separated from Chase and consider doing it all again. We never, ever outgrow the need for moment by moment grace, no matter the circumstance.
Sleeping off the medicines post-scan. He’s awake, but was too tired to respond to anything – even a picture.
Oh, but I’m so thankful to be able to bring you the hard and the good all in one, for within a few hours of the nearly two hour scan and recovery, we met with Chase’s neurosurgeon and learned that preliminary results showed negligible growth in the tumor site. Of course, we wait on the final consensus of the other teams and tumor board, but we are so blessed to share that at this point, Chase is stable.
Moment by moment.
Weeping may tarry for the night, but joy comes with the morning. Psalm 30:5b
Post-procedure had Teddy Grahams – the best way to break a fast, of course 🙂
Good morning! I’m over on the St. Baldrick’s Foundation blog this morning, talking about Chase’s amazing meeting with Rep. Peter Roskam earlier this fall. Join me to read what the US Congress heard about Chase!
Here, I’ll get you started… click on the link below for the full post:
“Over the years, there have been long days and trying times that I want to get up and shout, “This is so hard!” Times when I want to pull out the soapbox for what affects my family, and talk about the lack of funding for childhood cancer research.
Most days, I don’t shout our struggle because we all have something to shout. We all struggle.
Which makes it all the more precious when someone else steps in to shout it for you.
One September morning, I sat in a school gym. The whole family sat in metal folding chairs forming a small arc against the front wall, while hundreds of children and teachers sat on the floor facing us.
The principal stood to welcome everyone in her beautiful red shoes. As she spoke, there was a murmur of activity in the hall outside the gym, and the crowd gathered at the doorway parted for a single, quiet man…”
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.
Chase with Dr. Lulla while in treatment
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.
The shave was less than a week away when he committed and said “one hundred“.
The goal was met within minutes and when I asked him what came next, he smiled big and said “one thousand”. He asked and you gave him over three thousand.
His eyes got huge with the big numbers he’s still learning in school and when I asked him what was next, this oldest boy of mine, he looked at his bald brother and they smiled huge and said “FIVE thousand!”
And you know what you did? You gave him almost exactly DOUBLE that!
In under a week, you read and reacted and said this is the price of brotherly love on this, a six-year-old head…nearly TEN THOUSAND DOLLARS.
So, today, as he sat like a man and was covered in the green apron, they pulled up a bar stool for Chase and they took the clippers to his head because this is how he shows LOVE.
And his cancer brother went around the house all day today clapping and cheering sing-song that “Now we’ll both be baldy boys!”
“This is what I want to do… Help get medicines to help the doctors so kids like Chase don’t die.” – Aidan
THANK YOU.
*At the time the clippers were taken to his head, Aidan’s fundraising page read $9,510.00*
