November 9, 2018
-A significant day in the life of my son, Jayron.
It's been the journey of a lifetime. In my mind, it went from a stigma that I was in denial about and hugged close to my heart, silently hoping it will somehow go away, to this day when I want to shout at the top of my lungs because it is finally over, the treatment part at least.
3 years and 2 months ago, September 2015. I remember it like yesterday; that fateful day when a walk into the NW Pediatric clinic in Arkansas for what looked like an elbow inflammation will forever change our lives. After several agonizing suspenseful weeks and what seemed like a death pronouncement of ALL (Acute Lymphoblastic Leukemia), we were left with a simple choice: to fight for the sweet vulnerable 6-yr old that lay on that hospital bed or waste precious time in denial. The choice was clear enough, barring no tears.
But Jayron wasn't the vulnerable one; if anything, he approached the situation with acceptance and poise, and as any God-touched child, with resilience and a spirit of adventure. Oh, there were hard days, long days, painful days...in isolation, hundreds of needle sticks and blood draws, haunting screams when his veins refused to cooperate, 3-7 hour car rides back and forth with a mask on, isolation for months of home schooling away from friends, alopecia, medications...through it all, Jayron never complained. He rode those hospital buses in silence with those claustrophobic masks on, he reminded us when we forgot his medications, he stayed indoors when he had to, and when he could, went to parks with those masks. He was careful with his implanted port. He wrote tons of letters to his classmates thanking them for the get-well cards, meticulously drawing pictures for them, every day, for a month until one day he said, "mom, do you think they'd mind if I wrote one today for the whole class instead of individual ones?" And when he finally was cleared to go to school and visit his classmates, he took them cookies and told them that they had to "make good choices". No, I think Aaron and I were the vulnerable ones. Jayron inspired us to fight. To make the most of the situation. For example, when he rode the ambulance first time ever, instead of being scared, he looked at himself as an important personality to require all the attention from so many people.
So, we want to thank God for this boy, Jayron, because his has been the example of a life. Even when the initial symptoms of his illness were glaring and grave, he bravely tried to downplay them so that we won't worry. When we were naively dismissive of some of them or wrote them off as complaints, he would try to walk straight with his shoulders square so we won't think him a weakling. There were signs - at the time, we were clueless about these things - trauma from the littlest things, night sweats (which I believed were due to bed-wetting, even though he adamantly denied them), sudden and frequent fevers, fatigue. That final day when Aaron and I decided that I just had to take him to the hospital, I had gone to school to pick him up as usual and he was not on the pick-up line. When he was intercomed, he came up to the front desk and told me that he had been trying to stack up his books and chair, as was expected of the students at the end of the day, and his painful arm wouldn't let him. But while everyone had left, he'd stayed behind to try to do it, with one working arm because it was what was expected of him. He told me: "Mom, I was trying to stack up my chair and books and I just couldn't. But I didn't go to the nurse, mom." And that latter part because I'd frowned on his frequent visits to the school nurse for "not feeling well", at the time not realizing that his frequent fevers were symptoms of his illness. His teacher too had written to me to say she'd noticed his struggle with that arm throughout the day. You were brave and strong, Jayron, and through this all, you've taught us a lesson in humility and patience and we...thank you and thank God for you. That this day also coincides with a significant Holy day only goes to show that God's Hand is on you.
Equally commendable, we couldn't have done this without the overwhelming support of friends, family, and Baha'i friends , some of whom hosted us during countless hospital visits many hours away from home. My mom who left my dad in Africa and moved here so that she could take over the hospital visits while I had baby Jesse - I was 7 months pregnant at Jayron's diagnosis. She spent countless nights in the hospital with Jayron, never faltering. My aunts and their husbands who put their lives on hold and came to spend several days in the hospital; to hold my hand following the diagnosis. My in-laws for their prayers and support, Ojong for opening his home, my sister for her prayer vigil. An outpouring of support that was at the same time heartwarming and humbling and for which Aaron and I will be eternally grateful. Grateful to the amazing nurses, doctors, volunteers and staff at Children's in LR and St. Jude's in Tulsa. And above all, to God be all the glory for what I consider, not only a life lesson, but a lesson of a life (Jayron's).
Jameel - brother and ever-present wingman. I owe you a unique paragraph to pay adequate tribute. At the age of 5, Jameel will call Jayron at the hospital and talk with him for long periods and promise a visit that weekend. When he will show up, he will spread out his toys or puzzles on Jayron's hospital room floor, lie on his stomach and get comfortable. He'll be there for hours, humming, chatting with Jayron and working on his puzzles. Hospital staff got used to this sight and will skirt around him to get about the room. Then he will go exploring around the huge oncology unit while Jayron slept, peeping in every now and then to see if Jayron was awake yet. When Jay couldn't be in crowds of people to avoid getting ill, Jameel would go with him to play in the parks. I prayed heartily that Jameel wouldn't bring something from school because Jayron was sure to catch it. Their heads were always close together over a book, a game, a puzzle. They were inseparable. Jameel has always thought the world revolved around his brother. Thank you, Jameel, for being an exceptional brother.
To all those who'd been through this journey before Jayron and encouraged him, brave kids not much older than Jay, and some younger, who reassured us in the beginning while we were still in a daze as to what it all meant, we say thank you. Violet, the young 10-year old, who went to the gift shop and got Jayron a beautiful owl (owls just happen to be Jayron's favorite animal because he says they are wise) and a get-well card and balloon when she saw Jayron on his second hospital visit looking lost. She was there, I later learned, for a second round of chemo because her cancer had come back. But you couldn't tell because she had only smiles and encouragement for Jayron. Even in her predicament, she was able to look beyond herself and comfort another child. I wish I knew her outcome. And that was the reality in that hospital. Kids walking around with their IV poles and masks but pausing to smile and say hi to others. Hoody, as that green-eyed owl became known, left a delineable mark because my son insisted to take him to surgery. And when we went to see him post-op, the sight that greeted us was our 6-year old still asleep hooked up to numerous monitors, and Hoody upright at the foot of his bed seemingly watching over him. And so, recalling all this, Jayron says to all those for whom this is new, "keep fighting. And don't forget to cheer up other kids who are sad." To my fellow parents, I say, we know that our kids are resilient, and sometimes dramatic too, but please pay attention to the strange signs and symptoms. You know your child. Listen to him/her and listen to your gut.
 |
| It's over!! |
 |
| Grandma couldn't have missed this for the world. Even Jesse is happy for "Waywon", as he calls his brother :) |
 |
| Daddy Aaron drove thousands of miles with Jay to treatments |
 |
| Surrounded by love |
 |
| Some of the wonderful staff at St. Jude's affiliate clinic in Tulsa |
 |
| With his doctor, Dr. Kirkpatrick, at St. Jude's |
 |
| Last lumbar puncture |
|
| Some momentous pictures during this journey |
 |
| The fateful elbow that started it all. |
 |
| Special guest in the ambulance |
 |
| The boys playing a game |
 |
| 6-year old, Jayron. My aunts come to visit shortly after diagnosis |
 |
| Daily life in the hospital |
 |
| "Make good choices" |
 |
| The ever-present mask. After months of being indoors, at least he could get out. |
 |
Steroids made him put on weight too. He tried to stay busy when alone.
|
 |
| A very cute, hairless farmer |
 |
| Many adventures with grandma |
 |
| The children's hospital in Little Rock, AR, is a very beautiful place. As if to mask or soften the reality of the grave illnesses it held within its walls. |
 |
| Dad wheeling all the bags from the hospital entrance to the oncology outpatient clinic at Children's in LR |
 |
| It's really over, baby, and we love you very much. |
