My Nephew Trey

I have had a lot of people ask me about Trey lately so I thought I would put the current update of him on my blog. It was written by my mom after she had talked to my Sister Heidi (Treys Mom)

This will be a long entry...I talked to Heidi last night and she gave me a lot of information to share. She said she knows it has been awhile since she's updated but the last two days at the hospital were very long and she has been exhausted...Hopefully I will be able to share it all accurately...First off, nothing about Trey's case is text book. His reactions are unusual and have the doctors scratching their heads...the type of Leukemia he has hides in the body and is very hard to determine if it is in complete remission, which he has to be before they can do the bone marrow transplant. He hasn't had spinal taps for quite awhile due to the back pain, which helps the doctor determine his remission status, which in turn, then causes his doctor to be hesitant to move ahead.Trey is on a 60 day chemotherapy treatment plan. He has a treatment every 10 days and his first for this series was Monday (28th). He also saw a neurologist to try to determine why he is in so much pain. The dr stated he doesn't have nerve damage but found some "nerve aggrevation" which he didn't think should be causing as much pain as Trey is having. They want to do more testing and one test is doing "pin pricks", but with Trey on blood thinner they are hesitant to do it..Trey also received one of the meds he had been taken off. In previous entries two of the meds he needs to prepare for the bone marrow transplant had to be stopped. One med can cause blood clots, which it did, and the other med which is injected into the spine was stopped due to the pain Trey was having. The med usually given in his spine was given in an iv that goes directly into his heart. He didn't have a reaction until he was home where his eyes and nose swelled shut. He was also very sick with stomach pains and intestinal distress plus nausea. When he has these types of allergic reactions he can take Benedryl but didn't this time because they weren't sure it was ok until after calling the doctor and she okayed. He was doing better Tuesday but very tired.Trey's case will be presented to the City of Hope again today (Wednesday, 30th). Heidi was explaining to me about this process: A committee of doctors meet on a weekly basis and review a number of cases. These doctors may be from all over the world and meet via tele-conferencing. As each case is discussed the various doctors share from their own cases and look for similarities that may help with the treatment of the cases they review. One doctor doesn't make the decision for a transplant. It has to be a consensus of the entire committee. Anyone considered for a bone marrow transplant has to have their case reviewed by the City of Hope.When Trey is cleared to receive the transplant, he will be in the hospital two weeks before for complete chemo and radiation to prepare him for the transplant. After he receives the transplant he will remain in the hospital another 2 weeks as they monitor him and deal with the initial rejection. After this is under control he will be allowed to come home and he will require around the clock care for the next 4 weeks.Trey's donor, Raeghan will not have to have her marrow extracted. They are able to use her blood thru a different procedure that is less invasive and painful for her. She is required to meet with a social worker to be sure she is not being forced to be a donor. Heidi and Allen were required to sign papers that they will be his primary caregivers once he is home and they understand the requirements and conditions. They have to remove all animals from the home, masks have to be worn at all times. There will be limited contact with others. He has to be on a special diet and food prepared per instruction. In an earlier entry it was found Raeghan is his match, what is unusual is she is an EXACT match. There are a number of elements of the blood which determines the matching capabilities. Her blood matches completely. What is more unusual is Justine, Madison and Tristyn are also EXACT matches to one another.Another interesting aspect of the transplant is Trey's blood type will change after the transplant and will become the same as Raeghan's. I asked Heidi if the transplant could be repeated if this one doesn't work. She stated yes, but generally they are not successful.Trey feels very positive the transplant will be what he needs to beat this. He knows it will be a very rough time but he is willing to go through it. Trey is having a rough time right now. The constant pain is starting to get him down and mom says he's been kinda grouchy. He wants to be going and doing things with friends but his reactions to meds and treatments are so unpredictable it's hard to be able to do the "normal" stuff. He has plans to go to Catalina Island and a BYU game. Mom says if she or Allen can go then it's fine...They know what to do, others don't. Our hearts go out to Trey and his struggles. I know we all want to see him well again. I asked Heidi how the family was doing and she said, "We do okay..this has just become our way of life. Sometimes I have to be able to think about something else, Spider Solitaire on my phone has become a new addiction and is a way I unwind... I know when it's time to spend some one-on-one with my girls, but we're doing good. I know there are things I could do better but right now I do what I can and have to be satisfied with it." Heidi promised she will get pictures sent soon to post.On a lighter note: Kai, Trey's very sweet Bull Mastiff is a sweetheart but still a puppy..The other night as the family were all at mutual, a church meeting, Trey forgot to put Kai outside and she had the run of the house. When they all got home, Heidi heard a yell "Kai!!" coming from Madison. Apparently Kai had chewed on a library book and her homework...Heidi and the rest of the family had a good laugh about it...except for Madi..The next day Madison took a picture of Kai, her homework and the book, presented this to her teacher and said, "Look! My homework really was eaten by the dog and this is the one who did it!!" Her teacher thought it was pretty funny and had a good laugh over it!!Trey is scheduled for still more tests this week, will update as I hear results...That's all for now...