There are rare and wonderful species of joy that flourish only in the rainy atmosphere of suffering.
John Piper
This year, he doubled his digits, and he doubled his diagnoses too.
With his own eyes, he witnessed the celebration of the Super Bowl in Atlanta.
With his own words, he told his story to the Vice President of the United States in Washington.
With his own body, he’s gone swimming and running and laughed and played.
And with that same body, he’s wept and known fear and exhaustion and pain.
He’s had 1 surgery, 2 full body scans and biopsies, and 3 ultrasounds in the pursuit of this, the second cancer. Which means that he’s been under anesthesia close to 10 times this year.
He’s had 1 round of treatment, 2 documented instances of spread/relapse, and what feel like limitless amounts of blood drawn from his body.
He walked back into the world of seizures – for the first time in 7 years – and had to face down the fear of a potential brain cancer relapse.
He’s had MRIs, CTs, and X-Rays to spare.
And if I counted off the days out of the last 365 that he spent in the hospital, they number about 60. …that’s more than once a week.
Those are the days alone. But if I counted the actual appointments, the number would close to triple.
It’s been one of the most extraordinary years of his short life, and so it’s perfectly fitting and perfectly amazing that your response to his year and life was equally extraordinary.
Dear ones, in your celebration of Chase, you raised almost $5,000* in a single day!
You are incredible.
And I love that – because of your many, sacrificial, encouraging, ‘happy birthday’ gifts to the Rizzo Foundation on behalf of Chase – more help will walk the halls of the hospital, more tears will be dried, more smiles will be felt, and more end-of-their-rope parents will be granted more rope and easier breathing in the worst seasons of life.
This is all you, dear ones, and we are so proud of and thankful for your extraordinary response to our extraordinary Chase.
Thank you for faithfully, joyfully, compassionately walking this journey with us…
Moment by moment.
**If you haven’t had a chance to give yet, you’re not too late! Simply click HERE to donate now!**
And now, this morning, there are zero days left to wait.
Today, for the second time in his fast, yet long nine years, my precious boy will start treatment for a cancer.
The second cancer.
The second time this second cancer has showed up in his body in these last ten months.
The first time Chase fought cancer, passage was was measured in months and marked with the times we nearly lost him.
This second time Chase will fight is measured in mere days, but it is marked already with a profound separation.
There have been so many tears – of grief, anger, frustration, fear, pain, and sometimes even joy. But the thing with the tears is that after they rain down, they dry up.
And then hope comes again.
BECAUSE CANCER IS NEVER THE END OF THE STORY.
This is not what we would choose, but we move into it, knowing that even in our separation, we are never alone.
We are heartbroken, yet peaceful.
It is time.
We are ready.
Moment by moment.
Weeping may last through the night, but joy comes with the morning.
Psalm 30:5b
He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain.
Revelation 21:4b
**After ten months of diagnosis and fifteen days of preparation, while the rest of the 4th graders round out their last few hours in their corner classroom, Chase will lay in a corner hospital room and swallow radioactive iodine, thereby rendering him a radioactive danger to those he loves – for the sake of cancer eradication. For the next 5-7 days, Chase and anything he touches will be living in a prolonged state of separation (both in the hospital and at another location) in which he must remain at least six feet from all other people – until such time as he is officially “cleared”. Please pray for Chase and our family as we walk into the unknown.**
“Relying on God has to begin all over again every day as if nothing had yet been done.”
C. S. Lewis (Collected Letters)
It’s funny how a single day can change everything.
I was sitting in the top of a football stadium along the river separating Ohio from Kentucky, the sun warming the still air all around us when I saw a new message on my phone.
And everything changed.
For eight months now, the anchor in in the harbor has been a “wait” word. Wait and see if the cancer grows back. Wait and see if it grows into other new, breathing lung places. Wait to even look with an ultrasound because these kind of cancers grow so slow. And these doctors who see the worst and the harshest…? Well, can you blame them if they don’t want to over-cut thin skin, over-treat weary souls, over-anything these precious littles? I certainly can’t.
But the scared places in my heart wanted to blame and scream to stop the wait and start the fight. The cancer is slow in other bodies, but cancers seem to like Chase’s body too much, and the last one grew fast like a wild fire in the wind.
Four to six whole months to even peek inside… the pictures and news would come right before Christmas and his tenth birthday. Four to six unchecked months for the cancer to go and do anything, anywhere. And of course, it might not go anywhere. But this is Chase we’re talking about and he tends to have the outlier story; the road less traveled journey.
But then, a message read against the sun’s glare on my phone at the top of a football stadium changed everything just a bit.
For, you see, sometimes doctors change their minds. They talk to each other and pour over the charts and histories and results like a holy grail of sorts, and then they turn to each other and question why they should stick to the idea of four to six months when Chase is a blink-of-the-eye kind of boy. And so, instead of waiting for cold weather and holidays, the message said we do it now, in just a few days at the peak of the pre-Fall warmth.
And yesterday, with a simple phone call, everything changed again.
Because it’s not just the scan that comes in a few days, dear ones. Sometimes doctors change their minds about treatment too. They chart and think and test and then they turn to each other and question the wisdom of leaving cancer to grow in Chase’s body where it grows too well despite official prognoses and data. And so, while treatment may not be easy for Chase, it is a precaution that has gone from a distant possibility to an imminent reality.
For the first time since October of 2013, our sweet boy will officially go back into treatment.
It’s silly and crazy, because we’ve known to expect this since we heard the words “It’scancer” back in January. But it feels different now that it’s here, and it feels urgent in the speed of a changed decision. And I think at the end of the day, the best way to describe our hearts in this is ‘joyful grief’. We are so deeply thankful that the wait is over for now, and that the doctors looked to each other and came up with the answers that were heavy on our hearts. We did not have to fight them for these changes. They came to our conclusions on their own and that’s a blessing of the best kind when doctors have to be like family members on the regular. So there is joy in that oneness of mind, but there is grief too. Once again, we push into pain for the long term benefit and willingly subject our precious son to incredibly hard things for the sake of his future quality of life.
We have been told that we will hopefully know more by the end of next week. And it could all change again in a second. But until that time when the results are known, through that time of tests and procedures, and beyond – whatever may come – as long as breath remains – we cry out for grace and strength in the …
…moment by moment.
[All pictures are from this past weekend; fulfilling Chase’s dream to finally see his friend Robbie Gould play in real time. All our love and thanks to the Gould family for making this dream a reality for Chase.]
Wish: /wiSH/ noun – “a desire or hope for something to happen“
Before Chase had cancer, I saw the role of wish-granting organizations as that of giving an extra special gift to a person going through an extra horrible season. And that is a true perspective, but it’s also only a part.
For, the farther into and through the cancer journey we travel, the more I come to see wish-granting as a way to be known. The wish is often fantastic and above and beyond the every day, but the heart of it says this:
“I see you. You are known. What you are going through takes extra from you, and so here is some extra back, oh, and by the way, you’re pretty awesome and we’re only too happy to make much of your bravery in the ways that we can.”
Last week, Cal’s Angels, a local childhood cancer organization, partnered with the incredible Abt Electronics, one of the largest independent retailers of electronics and appliances, to bring Chase and his siblings just such a wish. The heart of Chase in these days is feeling his “otherness”, so we talked with him and hatched a plan to let him, the frequent receiver, the all too often powerless one, become the strong giver as he presented gifts to all of his siblings. He was thrilled to be in charge. (shocking, right?)
Chase has had a tablet of some kind in his hands (generous and given always – oh, the stories I could tell you some day…) since the time he was first diagnosed, but last week, thanks to the generosity of Abt and the heart of Cal’s, Chase was able to put brand new iPads into the hands of his siblings. And their first group text to one another was from Chase:
“I love you so much.”
The electronics are a dream (Abt and Cal’s also gave Chase an amazing iPod touch with headphones for hard hospital days where the music calms his soul), the special dinner and tour of the Abt facility was breath-taking (Chase could have spent all night in the security room watching the wall of screened footage alone), but I think the true heart of the loveliness was this:
Each of my children walked away from that night last week feeling better and more known; more secure in family and love. They were surrounded by Cal’s family, made new Abt family, and even solidified their ties with each other.
A wish is precious.
To feel known and loved is priceless.
**All our love and thanks to the Cal’s Angels family for seeing a need and meeting it, and special, incredible thanks to the Abt Electronics family for taking us in and being so awesome.**
For more information on the work of Cal’s Angels, click here.
For more information on Abt Electronics and to see their incredible facility, click here.
Be courageous. Be strong. And do everything with love.
At almost twenty four hours past ten exact (and so long) weeks, there is news.
Chase is going to be having a full body scan.
They used to say that absolutely anybody who got thyroid sick like this had to have their full body looked at, but in the last few years, the doctors realized that there are some who need this level and others who really do not.
And herein lies the conundrum that has lasted much of these weeks set aside for his post-surgery healing: Chase’s cancer lies low and quiet in the area where thyroid sick people really do not need a full body scan, but Chase himself stands tall and proud at the other end of the spectrum. If we were being honest, I always picture Chase holding the “high risk” sign marching at the head of the “high risk” parade, leading everyone who follows him into even greater unknown areas.
So these last weeks, the ones who oversee his care here in Chicago have talked to different endocrine teams across the country asking; “Hi there, what would you do with a child like Chase?”(as we all do at one point or another…) And some have thought to stick to the guidelines of thyroid ultrasounds now and again, while others have said they would scan the whole body just to be safer than safe. And ultimately, there was no right or wrong path, just whatever is best for Chase. But what is best for Chase?
Outside on Easter Sunday
And so it came down to last night. And I thought I had the peace to hear whatever I was going to hear on the phone. I even thought I had the words I’d need to either accept or advocate…
In these weeks, I have prayed for wisdom and strength and told all the doctors that I feel unfit for this decision. Do you have any idea how beguiling the idea of a full body scan is to the average cancer parent who beats back founded and unfounded fear with every blink of their eyes? I am not equal to these challenges because the logical part of my brain parses clinical data even as my mother’s heart screams to GIVE HIM ALL THE TESTS NOW.
And then it came. The call last night… “I talked to Chase’s oncology team, and they feel that, given his complicated history, it would be far better to just go ahead and do the full body scan.”
And I knew such peace in that minute. Because each moment of care is ultimately about Chase being understood. And in that phone consult moment, he was known. At this time, it’s not necessarily the known cancer that is the enemy, but the cell secrets his body likes to keep quiet until they challenge him (and us) hard and fast. And now all the teams are on board around this idea: we are ready to be done with cell secrets for a while.
Doing labs in his Washington DC shirt
But there is a reason they hesitated to do this for him and it’s because the process is long and complicated. In order to ready his body for its close up, he will need to be taken off the medicine that keeps him thyroid-functional even though he lacks the actual organ, and he will feel, as they said yesterday, “not himself”. He will sicken and tire and just hurt for the medication we are keeping from his little body. The medication that just, in the last two weeks, has finally regulated and helped him to feel better. And it will take two full weeks to get him to this tired point. And then there will be successive lab days and they will marry with test days, and so the entire process, start to finish, will probably last two to three weeks.
But we will know. (at least all there is to know in this moment)
Making a new friend in the hospital; Chicago Cubs first baseman, and amazing encourager, Anthony Rizzo
So, I exhale in relief, and Chase, well, he inhales in apprehension. Because in his precious mind, to look at the body is to find cancer. Every time there’s a new test these days, they find another mutant cell.
“What it…?” he says.
“We will deal and it will be okay.” I try to keep my voice even for him.
“But Mom, what if they find a new cancer and there isn’t a pill to take it away?” His nearly lash-less brown eyes are huge and his mouth twists around his emotions as he sits on the stairs and voices these too-big questions.
And God help me, I looked into his eyes and I broke and lied. Because there are certain things we don’t ever want to have to tell our children. “There will always be a pill.” Oh God, please don’t ask me to ever go back on my word to him…please.
But he knows me and he knows enough. “But what if there isn’t…?”
“We will always do as much as we can, my sweet boy,” I reach for him. “I don’t want you to worry for these things if it isn’t time to worry, okay?”
He nods. “Okay. Just tell me this. When I stop breathing here, will I start breathing with in heaven with Jesus and Mia?”
I swear that I stop breathing for him. How are these things even in his heart? “Faster than you can breathe, my love. Faster even than you can think.”
“Okay.” He nods as the fear fades off his face. In this moment, he is not afraid to die, as he sometimes is when he thinks about hospital things. Today he was just afraid to be alone and I could tuck that fear away for him, for a moment if nothing else.
“Tell me this,” I force a smile as I feed him the line I always do when he sits in the fear too long. “Are you planning on dying any time soon?”
He grins and jumps up. “No! I’m going to ride my bike, okay?” He pauses and switches to his most authoritative tone, “And hey, you need to tell my doctor that when they finally get this cancer out of me, I need to start my growth hormones again because everybody is taller than me.”
I smile back at him, thankful he is diverted for the now. “Do I look like your butler?”
“Yes!” He giggles and then is out the door and into the sunshine.
Chase (as “Walter Payton” with a Robbie Gould jersey) signs an autograph for Grandpa Poole after his school ‘Famous Americans’ presentation last week
One minute is the agony of decisions.
One minute holds the beating back of brutal questions that have no good place in the head of a small child.
And one minute, we are riding bikes and being sassy in the sun.
This is life with Chase.
Moment by moment.
“Now we see things imperfectly, like puzzling reflections in a mirror, but then we will see everything with perfect clarity. All that I know now is partial and incomplete, but then I will know everything completely, just as God now knows me completely.” 1 Corinthians 13:12-13
