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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

ZERO Rejection!!!

What better way to jump into Cullen's 2nd year post transplant than with the news that he is finally rejection free! His doctor is very proud of him and it goes without saying that Brian and I are too. He's been through a lot both pre and post transplant, but look at him now! He's happy, healthy and about to start his Sophomore year of High School on September 9th.

We decided to stick around in CA a few extra days to have some fun with friends and share our joy. On Saturday I drove Cullen to Monterey Bay where we met up with friends at the aquarium! It was joyful for me and Shea's mom to see those two laughing and enjoying each other's company. The next day Katie Grace's family invited us to their home for a barbecue. The Groebner's have been long time friends of ours since the very early PH days. It's a blessing to hang out with each other during these healthy, happy days after seeing each other through some really bad ones.

In between appointments last week we had the pleasure of sitting outside and chatting with Dr. Feinstein and Michelle, Cullen's "former" PH doctor and nurse. We miss them but not PH! On his way to pre-op we also bumped into the surgeon who performed Cullen's heart and double lung transplant. Being able to have him see Cullen looking and feeling so well is probably he best thank you we could give him.  During the week we also enjoyed a lovely dinner at Olive Garden with Becky (Izzy's mom) and Brian. We are so lucky to have all these special people in our lives!

There have been a few medications added to the fistful he already takes and once a month he will continue to have Basiliximab infusions, blood work and comprehensive PFT's but they can all be done at Marybridge in Tacoma. It's undecided at the moment when we will have to return to Stanford but hopefully it won't be for a while. 

As you can imagine caring for a new heart and lungs is complex and it's not easy to get a perfect report from all the tests. There are a few minor concerns not big enough to mention. I just ask that you continue to keep Cullen in your thoughts and prayers that he remains rejection free and that the bumps in the road remain so small he can barely feel them.

Love,
Colleen

(PS: There are new pictures in the photo section if you haven't already seen them on Facebook)






Comments

2 Comments

Jim Gibons
By Jim
My word praise God for these incredible life giving surgeons and donors -amazing journey his indelible spirit and your incredible love and support has carried him through. I can tell you all enjoy the little special moments in precious time.
Dennis & Laurie Brooke
By Dennis & Laurie Brooke
Now THAT's a nice anniversary present. Great news.