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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

Proceeding with Treatment


Dear Friends and Family,

For the most part Cullen has been doing well! He has had some trouble fighting colds this winter but in between those bugs he has been attending school and thriving. His grades are very good despite absences and his teachers seem to be quite fond of him for his maturity, intelligence and dry sense of humor. His passion is robotics. He is taking the class, is an active member in the club and spends many hours after school and on the weekends working with his friends on their team robot. At home his life still revolves around his dog Mellow and spoiling her to no end. He has also since returned to his driving school to complete the remaining classes and drives he missed when he was sick, so hopefully in the near future he will finally have his official drivers license.

The last time I updated I mentioned changes in medications in an attempt to slow down or better yet stop the signs of fibrosis in Cullen's smaller airways. The meds did help to some degree in that it gave Cullen time to return home, attend school and mentally prepare for the possibility of needing a more aggressive treatment. However, I'm afraid that despite feeling well his Pulmonary Function Tests continue to show a pattern of Bronchiolitis Obliterans so he will have to proceed with Photopheresis. The bad news is there is no way to repair the damaged small airways, the good news is there are thousands of them and we are catching this in the early stages. His team has seen great results in other patients who have received this treatment in that it has stopped or slowed down the fibrosis. The other good news is instead of a central line they will be placing an implanted vortex port. In other words it will be tunneled under the skin where except for when it is being accessed for treatment it won't  change his life in any way. He will be able to swim and bathe without the port being of concern for him and except for when he is at the hospital receiving the treatment, he will continue to attend school.
 
On Monday Cullen and I will be driving out to CA. On Wednesday we hit the ground running with the standard labs, chest xray, chest CT, PFT and clinic visit. We ask for your prayers on Thursday, Feb. 11th when he will have a bronch to make sure he is still rejection free, and to have the port placed. We will remain in CA until the results come in on Friday or Saturday and depending on the news, which hopefully will be good, we will then head home. Treatments won't actually start until we get back to WA. They will take place at Seattle Children's. Each photopheresis treatment takes 3 to 4 hours. The usual schedule is two treatments every week for weeks #1-4, then two treatments every other week for weeks #5-17, then two treatments every 4 weeks for weeks #19-31. Then he will be evaluated and a decision will be made whether he needs more treatment or if he can stop.

For those interested in the medical speak...ECP (extracorporeal photopheresis) is a form of apheresis therapy in which 3-5% of the white blood cells are separated from the rest of your blood and collected by spinning (centrifugation). Uvadexn which is a photoactive compound is injected into white cell rich plasma. The white cells are exposed to ultraviolet A (UVA) radiation causing bonds to form in the DNA of the white cells. The altered white cells are then reinfused through the needle or catheter.

In addition to this treatment we had to do another pulse of prednisone which always makes Cullen very sick. He missed 3 days of school this week due to the side effects but the slow taper started on Friday and today he's feeling a tiny bit better. Hopefully when we return from Stanford in a week he will be back on his feet and ready to return to school.

There is one last bit of news to share and it is sad! Our family had an especially nice Christmas until later that evening when we received the most heartbreaking news. Katie Grace, Cullen's close and long time PH/Heart and Lung transplant friend, passed away on Christmas due to complications of rejection. This has been a very difficult loss for us. I was able to attend her celebration of life in CA and I created the attached video for her family. It is a slide show of Cullen and Katie Grace along with the other friends that have made at LPCH/Stanford over the years. 

Thank you as always for your love, support and prayers. Cullen is doing well and enjoying life and he will get past this new bump in the road.

Love,
Colleen



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Comments

9 Comments

Diane Gray
By DJ Gray
So sad for the loss of Katie Grace, I have enjoyed hearing about her and Cullen's journey. Prayers and hugs to you and her Phamily. Prayers also for Cullen and you as you travel to CA and go through the prep for the new round of procedures. We will be praying that all goes well in CA, and the tx here in WA will be successful. I miss seeing the boys, you and Brian every week, but enjoy following Cullen's journey on FB. Love to you all.
Lois Tiernan
By Lois Tiernan
Oh Cullen and Coleen,
i am so sorry for the loss of your very special friend Katie Grace. I have grown to love her just from getting to know her in the trials she and her family have shared with you. The video with the great music is certainly a testimony to difficult hours you spent together, and the support you all give to one another.
I know it's very hard to understand, and even though we doubt it, the Good Lord will not send you more than you can handle, and He is there with you to give you the strength you need to get you through both your loss and the challenges that you continue to face. I just can't fathom how you keep on hanging on. May our Lady wrap you all in her mantel, to protect you and give you the strength and will to carry on. I hold your family in my heart and in my prayers, especially each Wed. at the Novena to Our Lady of Perpetual Help. God Bless You All.
Sally Chennell
By Sally Rudes Chennell
A beautiful tribute! I God bless you all for what you have been through, losing Izzy and Katy Grace and Cullen having such a hard time even after transplant. I hope and pray this new treatment will work for him. All of you deserve a break. Oh, how I hate this terrible condition.
Peggy Velasquez
By Peggy Velasquez
Prayers for you always. Have a safe trip. Praying for good test result and less painful treatments.
Naomi Steele
By Love from Grandma and Grandpa Steele — last edited
Have a safe trip Colleen and Cullen. We pray that you will have good results! We love you always!
Elise Hughes
By Elise
What a beautiful video Colleen. 2 of our favorite songs. So glad to hear Cullen is doing well in school and with driving! Continued prayers that everything goes smoothly at your visit to Stanford and during treatment.
stephanie barrett
By Stephanie Barrett
Sending prayers!!
maureen skonie
By mo and greg
Thanks for the update - everyone where I work asks about Cullen regularly and we are all praying. A special prayer goes up for Katie Grace and her family.
d. holeyfield
By d. holeyfield
Praying!!