Day 35/35 of chemo and radiation.
There were so many reasons to believe that we would never see this day.
The scant amount of data that exists put the odds of him making it this far at 33%.
And by “making it,”
I mean staying alive.
In preparation for these 35 days,
we revised our Health Care Directive,
we crafted our will,
we made no plans beyond April.
That’s how poor the odds were.
When they handed us the schedule of appointments for these 35 days,
I internally rolled my eyes.
Never, in these eight years of medical madness,
has a long term schedule mapping out how things will go,
been seen to the end.
His body always has a way of throwing a wrench into the plans,
doing the things that no one expects,
the quirks found only in fine print, under,
”In rare situations….”
Each of the 35 days,
I witnessed the effects of treatment on an elderly woman at the radiation suite.
I watched the progression as
at first she walked in to her appointments,
then began to be pushed in a wheelchair by her family members,
then saw evidence that she had been hospitalized, as she was pushed in a wheelchair by hospital transport,
and then wheeled in via hospital bed for treatments, tubes and wires attached to all the places,
a daily cataloging of decline.
I assumed her trajectory would be ours,
that she was our crystal ball
showing us what was to come.
I thought that IF he was able to get through all 35,
(and that IF felt large and looming),
that certainly the last few weeks would be spent
in the hospital,
that for the final treatments
he would be wheeled in via hospital bed, tubes and wires attached to all the places.
I would have
never,
ever
guessed
that on day 35
we would be leaving from our OWN HOUSE to drive to the hospital for treatment.
Never.
But drive we did,
his brother in tow,
marrow donor and best friend,
there to witness this milestone
as he has so many others.
When we arrived at the hospital and I asked if he needed a wheelchair,
he declined,
walking
on his own two feet
from the car
from our own house
to his last day of treatment,
treatment 35.
When we got to the radiation suite,
we were greeted by
my parents,
our daughter,
our American Cancer Society advocate turned friend,
the receptionists,
all ready to celebrate this incredible day.
The six of us family members
tromped back together to the treatment room,
our daughter’s eyes wide as she took in the machine that had been radiating her dad these past 34 days.
We watched as he gave them his birthdate, one last time.
We watched as they handed him his mouthpiece, one last time.
We watched as they snapped the mask on to his face and neck, one last time.
We watched as they covered him with a warm blanket,
one last time.
And then we all left the room,
leaving the machine to do its thing,
to have one last shot at eradicating any bits of cancer that may still remain.
All of us,
even the techs,
had to exit the room
for fear of the damage the machine would do to us if we stayed,
damage that had purposely been done to my beloved
34 times
and counting.
When he emerged
just ten minutes later,
the celebration began.
Every one who worked with him over these 35 days
gathered.
Receptionists,
radiation techs,
nursing assistant,
nurse,
physician’s assistant,
resident,
doctor,
each one having played an integral part in these 35 days,
was present as he
RANG THE BELL,
the bell that signifies the end of treatment,
the bell I wasn’t sure he’d ever ring,
let alone ring standing there,
strong,
on his own two feet,
not a current patient in the hospital.
Everyone present knew this moment was
miraculous, history-making,
and handled the enormity of that in their own way:
our pre-teen daughter by scowling,
the receptionist by weeping,
the doctor by blushing, blinking wet eyes, and mumbling, “See you for follow-up on Monday.”
The world is a different place
after the successful completion of these 35 treatments.
His survival changes the narrative and potential treatment plans around radiation and chemo in Fanconi anemia patients.
The next person may not have to hear and feel the helplessness related to the phrase, “We are in a data-free zone.”
The staff who cared for him these 35 days, came to fully recognize that what makes him rare goes way beyond his diagnosis.
They saw and experienced in him a man who, even on his most miserable days, took time and energy to make them laugh, ask how they were,
to care for them as much if not more than they cared for him.
Our family has changed in these 35 days.
We feel we have been given a gift.
We did not assume that we would be a family of three by day 35,
yet here we are.
We battled these 35 days together,
never assuming things would go our way,
but fighting through each day nonetheless,
determined that if things didn’t go well it would be because of DNA breakdown,
not because we’d given up.
We know that the radiation effects will worsen in the weeks to come.
We know that it’s possible that these 35 treatments did not fully demolish the cancer in his throat.
We know that this cancer will not be his last.
But we also know that we just beat the odds
by making it through
35 days
of chemo and radiation,
and for today,
that feels like everything.
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16 Responses
As I finish reading this, I’m handling the enormity the same way the receptionist did.
This is so uplifting for my little family. Ruth starts 8 sessions of chemo on Wednesday, with possible follow-up radiation. ‘No data’ is definitely where we are.
I am weeping. I have rung that bell with far fewer potential sorrows than you face but I do know that the resonance of that bell goes far beyond that room. Much love.
I am beyond happy for you guys. What an incredible ride you have had, and what a trooper (understatement of the year!) Sean has been during this treatment. He is indeed a pioneer and these last few weeks will be so important for the future of so many other FA patients. Love and hugs to you all.
Tears. Of srength. Of joy. Of strength. Of love. That God and all from abouve were with you. Along with your family and your medical team who made a bold decision. Heal. Mend. Sleep. Be proud. We love you.
Wow! I cannot even imagine!! Chills as I read this… Thank you again for sharing your families journey ❤ Hugs and continued prayers Allison
The intensity so aptly communicated in your experience of this monumental turning point, resonates deeply. Thank you. And to Sean, I know you are flooded with well wishes and expressions of awe to which I can only be a tiny echo in this cathedral-esque chamber of "thoughts and prayers". Nonetheless, my heart is with you and your family. It is truely obtuse what you all are going through and yet you wear it like a finely pressed suit. Mind boggling to the point of absurdity.
I would love for any strength I have to make it all the way from Denmark to you and yours, but know, that your strength is infectious as well – so maybe I’m just feeding you your own strength back again in an an uplifting cycle of sharing and caring. So thank you, man. Hope to see you in Chicago.
Words cannot express what we feel dear Sean, Allison and Maya. Deep relief and thankfullness with you, that all this was possible to do and overcome, and admiraton for your braveness and enormous strength, love and hugs to all of you – and the next big German chocolates are already waiting for you, best wishes from your close FA friends at Fanconi Germany
A very full heart. Endurance, fight, love, plans, science, family to surround you on your short distance each day of a very long drive for 35 days. I’m sad and grateful to see the love and smiles of Sean, Allison and his team. Kate
Giving so, so much thanks.
So happy that the bell has been rung! And what an amazing blessing to have your loved ones around you. I pray for energy and continued celebration and hope for all of you. Know that we are out here, paying attention, reading and feeling. Nowhere near to what you are feeling but feeling through your words nonetheless.
Wow. This is amazing and wonderful. Sending positive energy from out here in internet-land!
Thanks so much for this amazing update Allison.
Praise be to God.
Dot
Oh, my eyes brim with tears of so many emotions. We walk by faith, not by sight…. Thank you for sharing, Allison. Praying for peace for your weary bodies and souls.
Your husband is an inspiration on so many levels. He is such a fighter and I think he is so brave to withstand all the treatments and still hold on to his compassion for others and sense of humor. Your family is amazing and I’m so happy he had you all to walk beside him & great care. I’ve been been a similar journey with my father and mother. It’s extremely hard but you are all amazing ♥️
Congrats on ringing that well deserved bell. Rest and recharge is the new phase and a rebirth throughout Spring. YOU DID IT🙏👍🏼
Keep ringing the bell Sean.