×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Cullen with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Cullen’s Story

Welcome to our CaringBridge site. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most.

Latest Journal Update

Meet Mellow

Cullen's wish post transplant was to get a puppy. He went on-line and found a cute German Sheppard named Link at the Humane Society in Seattle. We drove all the way there and when we asked about him the woman said, "Well, we call him our million dollar dog because he has a very severe heart condition, has had multiple surgeries, will need more and will be on expensive medication for life." Out of all the puppies of course this is the one Cullen selected! Luckily Link was already on hold for other families that not only fell in love with him, but can afford him too. He will be ok.

Thanks to Link leading us there, Cullen knew as soon as his eyes spotted this 8 month old Jack Russell Terrier that he's holding in the profile picture, that she was the dog for him. He named her Mellow because that is her personality. She gets alone well with our big black lab and took to everyone in our family. Cullen however is her daddy and she is very attached to him, which is just what we hoped for. Mellow has been the best emotional and physical therapy Cullen has had. She is perfect! 

Our boy has also been very busy with on-line school. He has so much work to do in order to be a Sophomore in the Fall. He's working so hard but all that he has to do to catch up is overwhelming. Add to this doctor appointment interruptions and not feeling well. We were due back at Stanford the first week of April but the next appointment has been moved out to April 29th, giving us a bit of a break from the travel.  He has been referred to a respiratory doctor at Marybridge in Tacoma where he has had blood work and today at 1:30 a Basiliximab infusion which is an infusion he last received a week post transplant. It's given to help fight rejection. Since Cullen is in his 5th bout with rejection it was decided something more needed to be tried than just the steroid infusions. He will have another infusion on Monday. 

His doctor at Stanford also increased his oral Prednisone from 4MG 2xs a day to 20MG 2x's a day which caused serious weight gain, stomach, back and chest pain and the awful migraines again. We are weaning him back down but it's a slow process. Hopefully he will feel better once a lower dose is reached. Also increased was his anti-rejection medication, Cyclosporin. It will all be worth it if when he has his next bronch on April 30th we are told the rejection is gone.

I'm closing this update with a gentle reminder to love your family and friends whether they are near, far or despite how long it's been since you heard from each other. I learned today that another good friend of mine from college has passed away. I feel that it's appropriate to mention Jennifer Worley here because she was so faithful about following Cullen's story. We had not seen each other since graduation yet her friendship never wavered. She was a kind, loving person and I will miss her uplifting comments whenever I share news about Cullen and my family. This was very unexpected. No relationship is perfect but just try to live by the following as best you can, "Live, Laugh, Love...and Forgive!" Jennifer lived that way and what better way is there to be remembered?

Love,
Colleen






heart
4 people hearted this

Comments

2 Comments

Honey VanEecke
By Honey
Cullen - you look amazing! Please come visit us at Seattle Children's when you're up for it! :) We'd love to see you! :) And LOVE the photo of you and your sweet girl, Mellow! So cute and so happy for you.
maureen skonie
By mo
I'm sorry you lost your friend. That's very hard. I will say a prayer for all of you.
The dog is the cutest! I love Jack Russel terriers and Cullen looks like he's grown a foot taller. You are all in our thoughts.