Trey's Journey

(pictured : Trey and little brother - Hunter)

Welcome to Trey's website. Trey is 9 years. He was diagnosed with Non-Hodkins T-cell Lymphoma November 30th 2000 at 6 years, he went through 18 months of chemo and radiation to then have a central nervous system relapse October 29 2002. We are from Florida, we came to Duke January 9th 2003 for a bone marrow transplant. After two weeks of pre-transplant testing and another two weeks of cranial, spinal and full body radiation followed by high dose chemo Trey received his brother Cole's bone marrow on Feb 11th. We are very very fortunate that Trey's only sibling (Hunter was not born until May '03) was a perfect match and Cole happily provided his gift the same morning of the tranplant. Thank you Coley and Thank you for the blessing of a matched sibling transplant.

Journal

Wednesday, March 17, 2004 9:40 PM CST

Hi everyone,

Believe it or not 1 year has come and gone. Feb 11th was Trey's one year anniversary for his bone marrow transplant. We went to Duke for his one year follow up March 1, 2 and 3rd. Dr. Kurtzberg is very very happy with how things are going for Trey. All his lab reports are right on! His CT scans and chest x-ray show no signs of his cancer and his labs and pulmonary function test are good. She has said we can feel 95ertain that his cancer will not return!!! It is funny though. She told us this and we are thrilled to hear it but it doesn't make you do the victory dance you would think you would want to do. Don't get me wrong, anything different than 95s nothing we want to hear, but some how we are all afraid to celebrate for fear it might just jinx us into more problems. Silly I know, since we did nothing to give Trey his cancer in the beginning and we did nothing to make it come back when it did, still I would rather be safe than sorry and let the jinxers not have the thrill.

Trey as you know is back in school and is doing well. He is still suffering from some mild GvHD ( graft vs host disease ) which as some of you know, is his new bone marrow attaching his body since it believes his body to be a foreigner. Luckily the GvH he has only effects his skin. It makes the exposed areas of his skin red and dry. ( His hand, lower legs, face and back of his neck ). See living in the sunshine state really does me SUNSHINE. The sun aggravates his immune system and creates this problem. So Dr. K has made a deal with Trey that if he will apply sunscreen to his red areas every morning before school and every afternoon when he gets home, she will provide him with the special letter that he has gotten in the past to allow him to not have to stand in lines at amusement parks (i.e.; Disney World, Universal, etc. ) See when he was on chemo and went to these places it was important that he not spend allot of time standing next to strangers who could make him sick and while this is still a concern she offered the letter for the next year. It will take at least the next year for the GvH to completely go away and to wean Trey off the medication that keeps the GvH under control. It is this medication that makes him vulnerable to serious illness. Needless to say it will be great to have this medication gone so the threat of scary fevers goes with it.

The really great news, as far as Trey was concerned, was that she has given him permission to start sports again. He can even play football!! So we will be enrolling him in basketball and football as soon as the schedules are available. So we will be part of the crazy crowds running from place to place for this sporting event or the next. AHHH normality!

Cole and Hunter are supper! Cole is doing terrific in school and Hunter is growing like a weed. Hunter will be 10 months on the 29th and is starting to walk. He speeds around the house pushing around his walker toy. He really motors. He is an excellent driver as well, he even turns his little car before it bumps into the wall, very talented!

Scott and I celebrated our big 2 year anniversary yesterday ( Tuesday 3/16/04 ). We laugh when we say 2 years, it feels like we have been through a lifetime of experiences over the last years.

Well this report is relatively short and that is a good thing. There is really not much going on. Just the normal life we have all be longing for. Once again I want to Thank everyone for all you have done for myself and my family. Your support has made me stronger and helped me know that I was never without an ear. We go back to Duke in 5 months to check on Trey's GvH but other than that they will just be annual check ups. At the 5 year anniversary they will say he is cured! I will send out a message after each year's follow up but other than then you can only expect to hear from me on a normal Hi, how are you basis. Please write to me and say Hi every now and then, I would love to hear from you. Till then, please know you all made a miracle happen in Trey and have helped to keep a sweet angel here on earth.

For all our friends at Duke, please feel free to write, as I would love to hear from you. I still check on everyone regularly and am always please to see most of you doing so well. My email is nicoledmeier@earthlink.net. drop a note sometime and know I am always thinking of you.

Love to you all.

Nicole

Look at past journal entries

Hospital Information:

Patient Room: 5214

Duke University Hospital / We are home as of April 23rd
15721 S.W. 53rd Ct
Southwest Ranches, FL 33331
954-680-8090

Email address  : nicoledmeier@earthlink.net

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