a deadly disease
Page 4
1/20/10:
T minus 6 days and counting and what a battle between hope and fear going on inside of me....Yesterday, Tuesday, he had another neurology appt., nothing much and no intense examination, he did say that Terry's nerve conduction test was a lot better than he would suspect, I'll take that good news!!! Been having a lot of Daddy and Terry time by going to the NC Zoo, Frankie's Fun Park (riding go karts), museums and going out to dinner, it doesn't get any better than this...The love he has for me is absolutely beautiful.....this world that he has opened my eyes to is amazing, thank you my little angel, you are truely my idol...He ceases to amaze me with his positive attitude and his inability to complain about anything, lesson well learned, at 8 years old and carrying this deadly disease with him, he is teaching me to smile more and love life, we're living it to the fullest lately and this is very addictive and I can't get enough....He's an inspiration to all that he comes in contact with, especially me...My love for him will keep him with us for many, many years to come, mark my words!!!!
1/28/10:
Well, Tuesday morning, 1/26/10, he was in the operating room at Duke and the central line placement went good without incident, he was moved to 5205 after recovery he was moved to 5205, 5200 is the Bone Marrow Transplant Unit here. The anesthesia made him really sick. Wednesday, 1/27/10, brought his first dose of chemotherapy, Busulfan. He gets a 2 hour IV every 6 hours, moving full steam ahead!! Wednesday night during his 4th dose, he started crying saying it was itchy and stinging really bad...He was saying he wanted the Krabbe out of his body!! They stopped chemo and gave him benadryl and everything got better..Now before they give him chemo they give him benadryl prior to it....Today, Thursday, 1/28/10, he was really good with all his chemo treatments, woo-hoo!!!! He had his second day of class and everything here on 5200 is going as planned, we're another day closer home!!! He misses his friends and family and if anyone would like you can email or IM him on Facebook or AOL/AIM, we're equipped with a webcam so he can chat with anyone who has one also: guitarpicker37@aol.com; on facebook it's Terry Hallock, friend request me and I'll have Terry chat with you!!
1/30/10:
Yesterday Uncle Tommy flew in and gave me a much needed break...I went back to the apartment to sleep, which of course, I couldn't do. Yesterday was a good day, he had class again, chemo treatments went well and he made photo buttons. I came to the hospital this morning and Uncle Tommy told me that just prior to the 6 a.m. chemo session, Terry started hallucinating about bugs....This went on for the majority of the day..He was hallucinating about horseflies, spiders and snakes, screaming hysterically, my God, how much more does he have to endure????? They gave him Ativan, anti-anxiety med, woo-hoo this put him out there for hours!!! He became more emotional and was talking about things from days ago and doesn't even know where he is, this sucks so bad for him......
2/4/10:
The start of the new week brought no new hallucinations, thank God!!! But it brought ATG Tuesday, which goes after the T-cells, our bodies natural immune system....He got really run down from this step...He has had a high fever, high heart rate and a rash all over his little body...this stuff is nasty!!! All the blood counts are getting to levels where they are supposed to be.....we're getting ready for his big day tomorrow, his "new" birthday..the excitement and anticipation is taking over the fear that has been so much in the foreground....the light at the end of the tunnel is starting to brighten, bring on the sunglasses!!!!!!
2/10/10:
Friday, 2/5/10 came, Happy Birthday little guy!! Stem cell has been injected, the beginning to the rest of his life!!! Their motto here is "Grow Cell's Grow!!" This past weekend was uneventful for the most part. Monday, 2/8/10, brought on tummy pains and the runs, common side-effects. Hair is starting to fall out....Tuesday, hair is just about gone, he wanted a mohawk, bring on the clippers!!! Today was a good day, he's eating again!! not much pain but they say it will be coming and they will have a pain pump here with a button for him. He's in great spirits, I'm still learning from him, God, he's amazing, nothing but love in that little heart...Fight buddy, fight............
2/17/10 Wednesday:
Another week has come and gone...We're in day number 12 post-transplant and this is the average day where we're supposed to know if the cells have grafted....no visible signs yet, that meaning a high fever and a rash on his body, not all exhibit these signs...He's been up and about doing activities and participating in Olympic games that were designed for the kids here on 5200...he's smiling and laughing more, love these good days!!! Hopefully next entry I will be me writing that the graft has taken place!!!
