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.]
My dearest Fellow Parent and Partner in the Awful Fight,
First of all, you are so brave. Even when you feel like a huddled, sobbing child yourself – never forget, you are fulfilling your role as the lover and caretaker of your child and you are just so, so brave.
There are so many places I could start, and in truth, this could probably be a volume rather than a letter, but I’ll try and keep it short as I know you’re probably already on overload.
First off, they almost never tell you that sitting hunched and weary next to a hospital bed is going to feel not only normal, but appropriate and right, and leaving the room (let alone the floor or the building) might fill you with all sorts of things, not the least of which is dread. Nobody tells you that it might feel strange to breathe and function in the normal world when your baby is attached to IVs and monitors for their life. But do it anyway. Give yourself a place to breathe as if your own life depends on it – even if it’s forcing yourself out onto the city street with shaking knees and eyes filled with tears for just a minute or two.
Chase in post-op; sleeping off the anesthesia
I know it feels like life is ending, but it isn’t, so try not to let it close in on you. Your perspective has been drastically, irrevocably altered, but it is not gone altogether. Fight against your irrational fears (because trust me, there are plenty of rational ones in our scenarios), and keep pushing into it all to find your “normal” – a sliding-scale word that will likely henceforth only be referred to with quotation marks in your life. Some days, going to the cafeteria for a coffee is going to feel like the pre-cancer equivalent of cleaning your whole house and running all the errands. Victory is sweet.
Also, If you find yourself able to go see one doctor for yourself – make it a dentist. Do I sound crazy? I probably am. It’s hard to think about teeth at all when your baby’s hair is falling out or their nourishment comes through a tube in their veins. Sometimes you spend the day in the hospital and are home for only a few hours before going back and sitting in the ER until 2AM. On these days, self care of any kind feels counterintuitive, but trust me, you don’t want to deal with all the cavities when you resurface from treatment in two or three years, so if you master the whole “leaving the hospital thing”, go see your dentist. I’m saying these crazy things because I care, really.
Next, or probably in truth, even before you go to your dentist, find your “circle”. When it goes public that your child has cancer, a lot of people will want a piece of you and your story. People you haven’t heard from in decades will come out of the woodwork just to let you know they love you and are praying for you and want to do something for your family. It’s amazing and a little embarrassing that something so awful brings so much “special”. However, not all these people are in your fight for the long haul or will speak into your life (as opposed to taking a piece of it), so find your long haulers. One, two, six…the few, the trusted, the prayer warriors, the 24/7 texting-phone-always-on-friends who say they love you no matter what, will help you no matter the time or demand, and only give advice when you ask. These are your people for the marathon. They will be, as my dear friend Judi says: your “stretcher bearers”. Because you will need the holding up – desperately.
Chase with some of his “circle”… #SquadGoals
Speaking of needs… it’s okay to be a hot mess. We live in the generation of perfect parents with all things filtered and pinned and the truth is that it’s all too easy to forget that life is messy. No one parent can do all that is thrown at them in a day, let alone all that is expected, and then you add a cancer diagnosis to this guilt-riddled scenario? Well, say goodbye to sanity! Okay, so perhaps that’s a slightly dramatic comment, but I really mean the heart of it. We are broken human beings trying to care for other broken human beings and our bodies are fearfully and wonderfully designed, but year after year of extreme stress, emotional turmoil, sleep deprivation and facing terminal situations all take their tole. I guess what I’m getting at is this: there are many ways to go through this journey, so don’t look to the parent next to you – look to yourself, and don’t be afraid to get help if you need it. Anxiety, depression, and stress are real and devastating on an emotional and physical level. We were never created for this and anyone who Facebook memes you to just be strong…well, it’s nice, but the truth is we’re weak…and that’s not all bad. If you learn anything from cancer, let it be this: life is too short and too precious to be anything other than raw and authentic. Don’t pretend. You’ll be amazed how often your struggles are shared and your words identified with – because we’re all broken.
There are so many other little things I’d love to tell you…from the secret to finding washing machines in the hospital to making time for spiritual renewal, but for now, I’ll close – simply reminding you again that you are so brave and you are not responsible for the weight of the world, the outcomes, or even one whole day. Just take it moment by moment.
“Mom, do we still have to go to school even though it’s your birthday? Can’t we just stay home? . . . Uh, to be with you?”
I couldn’t help but smile at the logic of Aidan’s plea. The part about actually spending the day with his mother was definitely an afterthought to the part about getting a day off school. “Get ready, buddy. The buses are coming soon.”
The birthday breakfast had been consumed, Aidan and Darcy were preparing for departure, and Bob had taken Chase to an early ophthalmologist follow up. It was another busy day and a part of me thrived on it as I stood in the middle of the living room and took in the backdrop of holiday lights around another morning with the ones I love.
The ringing of my phone on the table by the Christmas tree cut into my thoughts. It was Bob.
“Hey, we’re done with the appointment.”
“Good! He’ll be on time to school. How did it go?”
“Not great. Chase needs surgery . . .”
How things and feelings can change in a minute.
“What! Why?”
“The cataracts.” Bob’s voice was subdued. “They’ve grown. The doctor said his vision was about 20/40 in both eyes the last time he was in and now, he’s 20/60 in one and 20/100 in the other. It’s time.”
“Now?”
“After the holidays . . . after the next MRI.” There was was the subtle suggestion that if the cancer came back, failing eyesight will be the least of our worries.
And with those few words over the phone, the light and joy seemed to ebb from the room. I didn’t feel the holidays or the birthdays or anything, really. Just the numbness that comes with sad thoughts and the quiet whisper that has occasionally plagued for three years now: We did this to him. Oh, how I hate that whisper when it comes at me. And how I wish there were never any threat of guilt in the sadness.
In the broad spectrum of surgery, this isn’t that big a deal. In fact, it’s quite routine, so that isn’t the heartbreak. The part that makes my throat grow tight is that it’s one more. It’s one more and they’re pretty sure it came from the treatments that saved his life.
Everything becomes so mixed up in moments like this and the brokenness screams out over the good.
That afternoon, I sat with Chase and we talked about his needing surgery to help his eyes. As I spoke, he took my hands in his. “It’s okay, Mom, it’s okay. Hey, look at me. When was the last time you smiled? Can you smile for me? It’s going to be okay.” So I smiled through the tears because you have to smile when Chase asks. He’s an old soul, my bald boy. And one more surgery needs to be scheduled with no guarantee that it’ll be the last. And the voice of guilt is never fully squelched; rearing its’ ugly head in the moments of greatest vulnerability. But in this moment, I need to keep close to the things I do know: If God is for Chase, not even a hundred surgeries and complications can stand against him because he is fearfully and wonderfully made and despite the sadness, my soul knows this to be true. Even when I do not feel or see it, God promises that His plans for Chase are good and are lovingly orchestrated to give us hope.
These truths are the only lights that banish the sadness.
I meant to write all week and the time completely escaped me.
Here is a brief (“brief”? A bit of levity there…) update from our week.
Monday: Chase went back into surgery to have his infected central line removed and a PICC line placed (in his arm).
Some things never change. Chase, before his central line removal, explores the cupboard.
Tuesday: We finally got to go home!! …in time to meet Grandpa and Grandma’s flight. (Early bedtime? Say what?)
Wednesday: Bob and I checked Aidan into outpatient surgery at our local hospital – to have his tonsils and adenoids removed. Surgery was successful.
Having to show up for surgery at 6:00 A.M…. Well, we may recover some day. Aidan was a pro and he was genuinely excited about all the little things like monitoring vitals, the beds and the ID bracelets because he was getting to be just like Chase. Watching them compare their hospital ID bracelets was both heart-breaking and a little hilarious.
Big brother joins the surgery club…
Thursday: Thursday is our scheduled chemo day. Anytime you think of us on a Thursday, we’d so appreciate your prayers. This day meant rising early to get back to “Chase’s Hospital” (he really does call it his hospital) for his labs, chemo, and another lumbar puncture (injecting chemo into his spine). This day was INCREDIBLY encouraging to us because Chase had been able to come home for a day (something never to be taken for granted on this chemo protocol), his counts had dropped – but not as low as they’d expected (so he could come back home instead of being admitted), and despite eating almost nothing, his body was doing well on the IV nutrition and he hadn’t lost any weight since his discharge on Tuesday!
Chase, Thursday, post-op recovery
Friday: The first day in SO many days that we didn’t have to be in either a hospital or a doctor’s office. Ahhh… We ended the day with a small celebration…cuddling up on the couch in our pajamas and watching the “Apple Dumpling Gang.” Silly and perfect and all together for a moment.
Saturday: Chase had a rough night and a slight fever in the morning. The fever got higher as the morning passed and we brought him back to the hospital early in the afternoon. (fevers in a chemo patient are really important as they are usually indicative of a system issue that the body can’t fight due to it’s lack of white blood cells).
Sunday morning: I’m writing this blog post from an inpatient room in “Chase’s hospital.” Chase will be here until he completes a course of antibiotics, the fever is under control, and his blood counts start going back up.
Even though it’s hard to be back in the hospital, we have so much to be thrilled about this week… two kids through two surgical procedures in two hospitals with no complications, Chase doing far better than expected, for longer than expected after his chemo clinic, and getting a special family evening to relax in the middle of the chaos.
