11/06/2025
November 5, 2025.
Two years. 24 months. 104 weeks. 732 days.
SEVEN hundred and thirty two days. That's how long Levi has been fighting leukemia. That's how long its been since this nightmare started. On one hand, I'm flabbergasted at how fast time has seemed to move - our lives have often felt like they've been on hold since Levi's diagnosis. How has is been two years already? But then I talk to a friend or see kids I haven't seen in awhile and I'm jolted back to reality and how much time has passed. Everyone around us has continued moving forward and some days I feel like we're still in the same place. But also "Baby" Boyd who was 21 months old two years ago is an entire feral preschooler with a dry and witty sense of humor. Newly four year old Graham is now a crazy smart six year old in kindergarten. Neither kid really remembers a time clearly before cancer entered our lives. I remember but can't grapple with how long its been. Time is weird.
Levi is doing decent all things considered. He's still taking chemo daily and has two lumbar punctures left before his end of treatment date in March. Getting him reacclimated to school has been...interesting. He's (understandably) not had a lot of responsibilities the last two years and has been catered too (again, understandably) so he's struggling a bit with having to put forth effort at school. He has an amazing teacher this year though that's really pushing him to be his best and on the days that he decides to try, its going great. He's always been a stubborn nugget which is a blessing and curse.
In honor of it being two whole years since we entered this valley, I thought it was a good time for a Beads of Courage update. For those that are just joining us or have forgotten, Beads of Courage is a program that allows patients to earn beads for all things related to treatment. The beads Levi has earned in the last two years tell the story of his treatment and give us a harrowing visual of all that he’s been through. When we first starting tracking and collecting Levi’s beads, I told the child life specialist that this program was really for me because I was probably going to become obsessed with tracking and collecting for him. Well that was a VERY accurate prediction (if you’ve ever seen our “bead binder,” you know) but what I didn’t expect is that Levi would ALSO get into it. He has also really enjoyed collecting his beads and always demands to display them as a badge of honor on his IV poles. Last year when we unexpectedly wound up at Nationwide Children’s, he was mad at me because I didn’t bring his beads to hang from his pole. I'm sorry, I didn't pack for a hospital stay on our vacation. 🫠
So with that, I present Levi’s current bead count. Each color/type of bead represents a different part of treatment. Some are GROSSLY undercounted (like pokes, the max I ever counted was five per day because honestly, sometimes he was getting poked hourly and 24 black beads for one day felt…excessive) but they all together tell his story.
• BEIGE: bone marrow aspirate, biopsy – 11
• ORANGE: central line or midline placement or removal – 21
• WHITE: chemo (undercounted because it took me awhile to learn all the words) - 603…and counting
• BLUE: clinic visit – 81
• DARK GREEN: TPN, NPO – 113
• GRAY: dressing change, skin care – 315
• MAGENTA: emergency, unusual occurrence – 55
• LIGHT BLUE: eye exam, eye drops, mouth care related to treatment - 466
• GLASS STAR: general surgery – 7
• FACE BEAD: hair loss, hair growth – 4 (he lost his hair two separate times)
• LIME: isolation, fever, contact precautions, neutropenia – 226
• PURPLE: IV infusions (one per day) – 262
• YELLOW: overnight stay in hospital – 261
• BLACK: pokes (blood draw, port access, blood sugar testing, ect) – 942
• TORTOISE: procedures (lumbar puncture, wound care, scope) – 53
• GLOW IN THE DARK: echocardiogram – 6
• PINK: respiratory support, sedation, anesthesia, ventilator – 189
• SILVER STAR: suture removal – 2
• LIGHT GREEN: scans (x-ray, MRI, CT, EEG, ultrasound, etc.) – 106
• RAINBOW: therapy/support staff visit (PT, OT, Speech, Respiratory, Psych, Narrative Medicine) – 416 (also under counted)
• RED: transfusions, blood products – 57
• AQUA: NG tube, catheter placement/removal – 65
• HANDMADE GLASS: act of courage or treatment related milestone (like today’s anniversary) – 20
• SQUARE HEART: admission or transfer to PICU – 5
• BUMPY: medication or mobility challenges – 39
• CERAMIC SPECIAL SELECTION: special accomplishment – 19
• FISH: transfer facilities, “upstream battle” – 12
• MEMBER’S CHOICE: discharge from hospital – 15
• MISC CHARMS/BEADS: holidays, special therapies like art and music, special addition beads – 62
All said, my dude has 4,428 beads.
4,428 acts of fighting.
4,428 moments of bravery.
4,428 moments that kids shouldn’t have to experience. But Levi has, and often with a positive attitude. I’ve always said that of our three kids, Levi was the best one to have to walk down this road because he’s so resilient. Not that our other kids wouldn’t fight but Levi has handled these last two years often with a smile on his face. He has faced some DARK stuff like losing his best friend to cancer and going blind himself due to a rare side effect. He’s spent two Christmases in the hospital and still battles with sorting our delirium from reality from earlier this year. But here he is, alive and learning how to be a kid again.
March seems so close – like there’s a light at the end of the tunnel but for us, we wait with bated breath. Germ season is upon us and last Christmas’ dark turn still feels fresh. We are praying that he can stay out of the hospital and ESPECIALLY the PICU this winter. We’d really love to be home for Christmas. We’d really like to get to life on the other side of treatment without more battle scars. We can only rely on our faith to carry us to the finish line at this point because we are tired and weary. What a long, dark valley this has been. But God.
As I wrap up this LENGTHY update, “dear diary” session, Levi would also like to remind everyone that when this is all over, he is still SET on having a “meat party” to celebrate with everyone. He wants his dad to smoke all the Texas BBQ his heart desires and to party it up! So stay tuned for that because man, will it ever be a reason to celebrate!
Thanks for sticking with us and continuing to pray for us. It takes a village. ❤️
