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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


Cullen has really not been feeling well. He is suffering with a migraine that never goes away, NEVER! The pain is over the top. When this symptom returned about a month ago both myself and his nurse believed it was probably due to the infusions and prednisone increase. He is back down to his normal dose and if it was the cause, it could take another week for Cullen to start feeling better, but because the pain is so intense and mostly on the right side of his head we have become more concerned that maybe there is something else going on. He has an appointment with a Neurologist on Monday and I'm hoping a CT or brain MRI can be arranged. 

His next appointment at Stanford is on April 29th and his next bronch to check on the rejection that I am praying is gone, will be on April 30th.

I'm sharing this to ask you to pray for the doctors. Pray that they can figure out a cause for the migraines and a plan of how to rid him of them. What I don't want is just pain management. I don't want his pain managed, I want his pain gone! He is bed ridden at this point and getting 0 school work completed. I feel so bad for him and I know his medical team does too. He was doing so well for a while and I would really like to have those days back again.


3 people hearted this



ron steele
By Grandpa
ps. Good looking dog and picture of you.
ron steele
By Grandpa
Best of LUCK on getting rid of those Migraine's Cullen. Grandma and I are praying that all goes well and that you have a safe trip to Stanford and they find the culprit that is giving them to you. We're back in Wisconsin now and will be heading back to California in September. Love and Miss you guys.
maureen skonie
By mo (and Greg)
I'll offer up some prayers to my mom (the patron saint of children). She would adore your boys. May God and the Holy Mother keep you all in their love. (Hug to Brian for me.)
d. holeyfield
By d. holeyfield
Praying for answers!
Stuart Berwick
By Stuart
Migraines have been part of my life for years but there are some wonderful medications out there. Praying for you Cullen
Jeanette Miller
By Jeanette Miller
I have migraines a lot at this time of year. Totally understand the desire to take your head off & put it in the freezer. Since we can't do that we look to or try other things. Hope your Drs can find something to help you. Praying for you all.