Karsen Strong

Disney days are always fun with family and friends….but they become extra special when you see actors who take a moment to honor a photo moment with a bunch of boys who’ve watched The Sandlot! you made these boys day for them to be able to get a photo with Hamilton “Ham” Porter! You’re a super star that will live on in the hearts of young boys for years to come! Thank you for being so kind yesterday. Karsen was over the moon!!!

Spring Break day calls for a little boogie boarding sesh! Perfect waves and weather…Karsen is loving his Krypton board!
So much fun in the San Diego sun ☀️

☀️
*I do not own the right to the music*

It’s been a little while since we’ve done a HEALTH UPDATE on Karsen. We wanted all the details before we posted.
•
Over the last couple of months, he’s had multiple doctor visits. Mostly routine visits to follow up on his general health with Oncology and Endocrinology. We’re pleased to report most things look great. He did however have some urine labs that looked concerning so we were asked to see his nephrologist sooner than later.
•
Last month we finally got in to see his nephrologist. His solitary kidney does all the work of two kidneys so it’s really important that we keep the kidney functioning as good as it can. During treatment he had an acute kidney injury that hit his only kidney, so it’s being watched closely. His urine labs, coupled with some blood labs pointed to his kidney taking another hit. At his appointment, we discussed hydration saturation and doing all we can to prevent dehydration with all cost. We decided to wait a month, have Karsen hydrate as much as possible and then in another month repeat his labs and add in a kidney ultrasound. We spoke to his school asking for them to allow him to have water at his desk so he can drink all day, and they’ve been wonderful about allowing that.
•
This week was our 1 month follow up appointment. We had a pile of labs both urine and blood pulled and then completed the kidney ultrasound. Yesterday we met with his nephrology team and discussed the results.
•
Even with a month of high fluid intake and hydration saturation, his labs came back the same. He’s been trending these labs over the course of a year, but with some fluctuations here and there. However with things being the same as the previous month, they informed us that Karsen is now in Stage 2 of chronic kidney disease.
•
These weren’t the results we were praying for. Karsen is so good about drinking water all day. His doctor told him it isn’t anything he did or didn’t do that caused this. It’s likely just the onset of everything he’s been thru. However now that we know he’s in Stage 2, we have to do all we can to further protect his kidney so it doesn’t continue to decline.
•
The doctors did say that his kidney could stay at this stage for a long time, so that was reassuring. However they will continue to keep a closer eye on it.
•
In addition, he will be doing another 24 hour blood pressure monitor at the end of May to check his blood pressures again.
•
Last time it came back as “white coat hypertension”. We’re again praying it’s still just that.
Please continue to keep Karsen in your prayers. We feel like we have so much of this journey behind us, and then we are reminded of the late effects that treatment has. This journey is not over, but all in all, Karsen is doing wonderful. He feels amazing! He’s spunky, he’s energetic and he loves just being a kid…even if it comes with doctor visits. Thank you all for loving him and praying for him over all these years. 

Last night was so much fun at the baseball game! After the game we made our way down to the field to see if we could get Karsen’s shirt and baseball signed. We got in line for .sokolove I don’t know what prompted JT to ask Karsen what was on his necklace, but when Karsen told him it was St. Peregrine and the Miraculous Medal, I said to Karsen “tell him why”. Karsen told JT “I’m a cancer survivor”. Immediately JT saw the superhero Karsen is and told him come here…he picked Karsen up over the wall and put him on the field to take a photo with him! Karsen was so excited and talked about it the whole way home.

Thank you, JT, for making this little guys night one of the best nights of his life! Your kindness went so far last night!! 💛🍌⚾️

🍌⚾️

So much fun celebrating and and our first grand baby Levi yesterday. We can’t wait to meet this little guy.

June can’t come fast enough 🩵🍼👶🏼

Happy 27th Birthday to my beautiful girl 💗🍀
Watching you grow into the woman you are today has been one of the greatest blessings of my life. I am so incredibly proud of you—your strength, your heart, your love… all of it 😘

And now, getting ready to watch you become a mama to your own little girl… there are no words 🥹 I can’t wait for you to experience that same deep love, friendship, and unbreakable bond that we share. It’s the most special thing in the world.

You’ll always be my daughter… but you are also my best friend 🌸
I love you more than you’ll ever know ☘️❤️🥰

Watching your baby grow up is one thing…
Watching science try to help protect his future is another. 🤍

A few days ago, Karsen had his bone age X-rays done. Today he saw his endocrinologist to discuss the results and to have more labs drawn. At 11 years old, his bone age is measuring at 13. Two years ahead.

We’re still waiting on a few hormone labs to come back. If they show he’s producing testosterone, the doctor discussed starting an aromatase inhibitor — a medication that decreases estrogen production. Apparently as boys produce testosterone, they also produce a small amount of estrogen. That estrogen helps close growth plates. If we inhibit the estrogen, we will stop the growth plates from closing too soon. The goal would be to slow down his bone age advancement and give him more time to grow.

Right now, if we do nothing, he’s projected to be about 5’4” as an adult.
Before all of his treatment for Neuroblastoma, his projected height was somewhere between 5’10”–5’11.”

Childhood cancer treatment definitely saved his life. But it also left some lasting side effects — and height is one of them.

And yet… here he is.
Strong. Healthy. Thriving.
We’ll keep advocating. We’ll keep praying. We’ll keep doing whatever gives him the best chance to reach his fullest potential — in every way that matters.

Because numbers on a growth chart don’t define him.
His faith and strength does. 🙏🏼💪

🎗️

Phase 1 ✔️✨

Today Karsen completed Phase 1 of his braces journey — and I couldn’t be more proud of this kid.

After TWO different palate expanders (because that first one was pure torture 😅) and months of straightening out his upper teeth, we officially hit this milestone. His smile is already looking so good!

Now we wait… 6+ months for the rest of those adult teeth to fully erupt and make their big debut. And then it’s on to Phase 2 — full braces. 😬🦷

If there’s one thing Karsen has proven over the years, it’s that he handles every season with courage and patience. From big medical journeys to now orthodontic ones, he just keeps showing up and smiling through it.

One step at a time. One phase at a time. Grateful for progress. 🙏

Such a special morning 🤍🙏🏼✝️

Watching Karsen serve Mass is always a proud-parent moment, but having the honor of serving alongside Bishop Michael Pham made it truly unforgettable. Karsen also received Communion from Bishop Pham, which made the moment even more meaningful and humbling.

After Mass, we spoke with Bishop Pham and told him Karsen was a stage 4 cancer survivor. Bishop Pham took time to give Karsen a personal blessing. A quiet, powerful reminder of faith, service, and grace that we’ll carry with us for a long time.

So grateful for mornings like this. ✝️🤍🙏🏼

CatholicLife