Cullen’s Story

Site created on December 7, 2012

-THE PRESENT-
May 24th , 2022 we found out that Cully has relapsed after 9 months.  There are new spots showing in his legs, arm, mandible, skull and a new smallish tumor originating in his eye socket.  You are never prepared for this news but we will fight this stupid disease again!

On September 8, 2020 Cullen was diagnosed with Ewing’s Sarcoma.   This is a rare bone tumor that originated in his pelvis and was able to hide and grow unnoticed in the void space behind his pelvis and he wasn't having any symptoms.  The cancer spread throughout his pelvic bone, up his spine to his skull, his lungs and down his legs some as well.   Cully is a trooper and fighting like hell to beat cancer again!

-THE PAST-
On December 6, 2012, our little Cullen (age 3) was diagnosed with Acute Myeloid Leukemia (AML).
You can only imagine how devastating this is for a parent to hear.

Our story...
Cullen is one awesome kid...all five of our kids are awesome in their very own way. Our oldest is Mateo who loves anything and everything sports, especially football and baseball. Then comes Ella, she's our gymnast and adores all animals, big or small.  Mason is our third. He's the strong, silent type with a goofy personality.  Then there are the twins, the youngest. Amy always said she wanted to be done having kids by the time she was 30 and we did...we had our 3 before we were 30. BUT, right after Amy turned 30 she turned to me one day and said "I'm 30 so it's now or never, let's try for one more!" I was ecstatic...and we were pregnant within a couple weeks of that conversation. We had an early ultrasound at about 6 weeks because of some very minor concerns the doctor had with the pregnancy. At the ultrasound, the doctor smiled and informed us that as of that moment we were having twins, however, people usually don't even know they are pregnant this early, much less having an ultrasound and that it's common that there would be two, or more, yolk sacs but many times only one develops into a baby. She told us to come back a few weeks later to see if both develop and have heartbeats. A few weeks later, we were back and it was then we saw two tiny heartbeats...Lily and Cullen! The pregnancy was flawless and they were delivered nearly full term at 37 weeks! They were always the picture of health at all their appointments, besides both having to have tubes put in their ears because of multiple ear infections. Lily is a little mother and a girly-girl.  She's going to be a heartbreaker when she gets older but she's her person with a big, and stubborn, personality. Then there's Cullen, or Cully as he's more commonly known. He's one-of-a-kind. He got a big smile, a big heart and can win over anyone pretty quickly. He'll make a great politician someday!

Our life changed drastically on December 6, 2012. Life as we knew it would never be the same when Cullen was diagnosed with AML. I can remember the look in our pediatrician's eyes when he walked in the room, but I had no idea the impact on our lives those next words out of his mouth would have.

Since then, Cullen has gone through intense chemotherapy but he kept a smile on his face the entire time and still does. He's definitely been the picture of bravery. Like I said, he's a one-of-a-kind and we love him for it!

Visit CullyStrong on Facebook:
https://www.facebook.com/groups/startingoverwithcullen/

GoFundme account set up for Cullen:
https://gofund.me/56f7add7

Newest Update

Journal entry by Matt Cisneros

Hello everyone!  

Just wanted to send a quick update!  Surgery went according to plan yesterday.  Actually better than planned (I think).

The surgery was supposed to be a few hours but the surgeon came out after only about 2 hours and said he was all done!

He said that he decided not to remove any of the previously diseased bone to reconstruct with the bone cement because it was more solid and stronger than he thought so he just reinforced with the plate and screws right above the knee.  He ended up putting in another second plate and screws higher up mid-femur for more support and strength.

Cully was doing great yesterday.  The doc said they injected the surgery sights with a local anesthetic (similar to Novocain basically) so he said he should feel pretty numb and he was feeling like this is no problem.  We were worried that once that wore off he would be hurting and he is today.  He has a really high pain tolerance after everything he's been through so if he's hurting then he's really hurting.

Cully has always been a good "patient" but he's a teenager now so it's been a little tough because mom and dad are mom and dad and annoying and questions are annoying so we're met with some resistance even asking "How's the pain? What number is the pain?".  That makes it a little tough to get a real read on the pain level to get it under control.   I get it though.  He's been through a lot and I think there is some disappointment after feeling so great yesterday when he woke up today feeling stiff and sore! 

Thank everyone for thinking of us and reaching out!  The doc said that it would be a quick recovery so I think we just need to get through these next couple of days!

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