Lincoln's leukemia journey

09/12/2025

September is Childhood Cancer Awareness Month, and for us, those words are not just symbolic—they are our lived reality. My son has faced relapse, endured remission, and undergone CAR T-cell therapy, treatments so intense that they take away the very essence of childhood. Cancer doesn’t just attack the body—it steals moments that can never be returned. It takes away the chance to make friends at school, to laugh and run at recess, to learn by making silly mistakes.

To fish at the lake on a summers morning, to laugh until their stomachs hurt, to run, to play, to just be. It takes away birthdays celebrated without hospital walls, family dinners without fear, and nights of sleep without worry. It forces a child to sacrifice every part of innocence, joy, and normalcy in exchange for a battle that no adult should ever have to fight—yet somehow, our children stand at the front lines. Childhood cancer doesn’t just steal hair, energy, or time—it steals childhood itself. Childhood cancer brings life to a halt and forces our children to sacrifice everything that makes those years magical—just to stand at the front lines of a fight they never asked for. My son is more than brave; he is living proof of resilience. But awareness isn’t just about bravery—it’s about acknowledging the unimaginable cost these kids pay for the chance to keep living. 💛

This month is more than a cause—it’s a reminder. September is about honoring the bravery of children like Lincoln, who face the unimaginable with courage beyond their years. It’s about remembering the children who didn’t get the chance to grow up, and about fighting for the ones still in the battle. For me, September will always carry the weight of what was lost, but also the gratitude that Lincoln is here, a living testament to resilience, strength, and love. He is my hero, my heart, and my reason for wearing gold. 💛

09/06/2025

Hey you… Yeah, you 🫵🏼.

Wanna know a secret?

This guy, right here 👇🏼, his B CELL count is 0. And his minimal residual disease percentage, yeah you guessed it.. it’s 0% too.

Which in other words, means the CAR T CELL therapy is working exactly as it should! And theres no evidence of active disease visable.

Yes, we are over the moon excited.

For now, we are unplugging and taking off camping for awhile to soak in the blissful feeling of being able to not only breathe again, but go to sleep and wake up knowing that our son, he’s gonna be ok!

We know, things can change in a very quick instant. We also know theres a 50% chance of early relapse.. However we are choosing to forget about that for .. a little while at least, while we soak in what a privilege it is to have a healthy, happy, full of energy 8 year old little boy again.

And also sleep, we’re definitely taking time to sleep. Because - his energy, want to explore, curiosity, and immense desire to see how far he can push me “today” has me ready for bed by noon.

A feeling I resent ( the tired by noon & being groggy the rest of the day ) yet I am so thankful & so incredibly blessed to say I can once again experience it thanks to my little guy.

❤️🎉

08/11/2025

We’re officially on day 14 post car t therapy infusion.

Lincoln has been absolutely outstanding. He’s had no side affects ( knock on wood ) thus far, and has been energetic, laughing, playing, and in good spirits majority of the time. There’s been a few days where’s he’s been slightly cranky or has slept literally the entire day but I’ll take that as a sign that his body is working extra hard to reproduce the modified cells so that they can do the hardwork from the inside. We should be discharged Wednesday from the hospital it’s self and moved over to the Ronald McDonald where we’ll stay for 2 weeks in case any late post infusions complications arise.

The doctors are blown away by how incredible Lincoln is doing and how phenomenally his little body is handling the infusion of his car T cells. Over the next 2 weeks we will have 3 clinic appointments to check his levels and then we will move to once a month after we go home.

We have “ the big “ appointment scheduled for mid September to check to see if there are any B cells present. If there are NOT any B cells then that means the car t therapy is working, if there are B cells present then that’s an indicator that it unfortunately is not working… at that point there isn’t any options left other then to try again, which would be the final attempt at curability. If at that point it didn’t work we would go back to doing chemotherapy to keep it at bay as best as we could until we moved into end of life care.

But none of that is going to happen because Lincoln’s a superstar and is kicking major ass. Thank you all for the continued messages, positive vibes, the love, the check in’s, from near and far. We couldn’t do it without all of you.

❤️❤️

07/10/2025

My super star…..

Has officially entered remission once again.

We’re over the moon.
❤️🥰

Although this doesn’t mean he’s done and this is over. It does mean we’re one step closer to the finish line.

CAR T THERAPY cannot come fast enough to hopefully keep this horrible disease at bay for the rest of this guys life ❤️❤️

05/22/2025

Hi guys, sadly we are here once again. Ive been saying the words “it’s a relapse” confidently… Kaley Pavan needs your support for Lincoln’s relapse battle

05/11/2025

I know alot of you have been waiting for an update so alas here it is.

Lincoln has officially completed his first “ block “ of treatment, which included 48 different rounds of chemotherapy ( oral, IV and interthecal ) 4 lumbar punctures, and 3 bone marrow aspersions. He handled the chemo a lot differently this time around - he was visibly in alot more pain and experiencing a lot more discomfort. Being older now and a tad more verbal he was also able to vocalize his pain a lot more which was extremely hard. This time around he wasn’t as active and spend majority of the time in bed watching movies or playing video games, with very little interest in anything other than that. He lost his hair within a week of beginning chemotherapy, and also lost 4 teeth due to it as well. During the 3rd week he stopped eating due to his mouth/throat being raw from what we believe to be caused by the oral chemotherapy - due to this Lincoln was actually TPN fed for a period of 2.5 weeks.

When we first started this journey for the second time we were informed we had 3 different treatment options. 1 being following the same protocol as last time.
The second and third being immunotherapies - both of which only had a at most 50% chance of success.
Blinatumomab, and CAR T CELL therapy. While both blinatumomab and CAR T-cell therapy are effective immunotherapies for certain leukemias, they differ in their mechanisms, administration, duration, and side effect profiles. The choice between them depends on individual patient factors and treatment goals. Both of these have potentially severe side effects including neurotoxicity, and cytokine release syndrome, BLINA is a continuous 24-7 infusion where as car T cell therapy is a multi step procedure that can take up to 4-6 weeks to finish as they extract cells and ship them to the states for genetic modifications.

After Lincoln finished this block of treatment they expected his minimal residual disease to be below 0.8, last time he ended with 0.2 however unfortunately this time around he ended with a 2.8. Given his MRD being so high this took BLINA out as a treatment option and only left car T cell therapy.

We’ve been home now for just over a week and Lincoln is loving every second of it. He has been in quite a bit of pain and unable to walk some days, very shaky, but eating me out of house and home thanks to the steroids once again - however overall he’s pretty happy. On the 26th of this month he will go to Calgary to have his T cells extracted and shipped to the states and then in June he will have them infused back into his system and will have to stay in ACH for 2 weeks to monitor him closely for any symptoms or complications.

And for us, all we can do is take it one day at a time and pray.

04/19/2025

Takes less then 5 seconds to hit the share button.. every penny helps my mom and dad stay close with me during treatment

Hi guys, sadly we are here once again. Ive been saying the words “it’s a relapse” confidently… Kaley Pavan needs your support for Lincoln’s relapse battle