Every day I provide a handwriting sample to see if I'm experiencing tremors or neuropathy in my hands. My penmanship has never been that great - good luck to the handwriting analysts! Check out all the warning labels on the Blinatumomab. Nice eh?
If the therapy is successful in bringing me into remission, I will have to undergo some pretty intense chemotherapy in order to completely hollow out my bone marrow and eliminate my immune system. This will prepare my body for a second bone marrow transplant. This time we can't use radiation. Initially I was excited about this (radiation was not kind to me) but that only means I have to endure chemotherapy with a higher toxicity.
If that doesn't kill me (sorry but that's the truth) then we move for a second bone marrow transplant. Transplants have a 99% success rate of grafting, but transplants after relapse only have a 25% chance of keeping someone in a long lasting remission. Not odds you want to take to Vegas, but we don't have much other choice.
Yesterday was pretty exciting I started getting red in the cheeks and then fevers and chills. Last night my fever hit 103 - I soaked through two shirts! The good news is that Tylenol seems to be working in bringing the fevers down.
For some reason only my sideburns are growing in. If I put on a baseball cap it looks like a have a head of hair underneath - I wish I could grow some huge lamb chops and really pull a gag, but that's probably not going to happen right away.
Had a neat visit yesterday, try to follow this; my cousin Mindy's, Husband's, Sister lives in a suburb of Houston and printed out some family pictures for us. She even framed them so we could put them around the room. It feels much better in here now. I can't wait to bring Kezman down when I get out of this joint, I miss that kiddo!
I pulled out my guitar and played her a couple songs and said, "That's all I can really give back right now." All I can say is wow, the kindness of others is truly humbling. I've been thinking a lot about the account recorded in the 2nd chapter of Mark regarding the man afflicted with palsy - a disease that caused night sweats, shaking and crippling of the limbs and often proved to be fatal.
Recently it was pointed out to me that there was no way this man could come to Jesus to be healed on his own, the record states that "four" carried him. When they arrived at the house it was too full to get him through the door - did they give up on their friend - no, they climbed up on the top of the house, pulled the roof apart and lowered him through!
We often think of the miraculous healing that followed, but I want to focus on these four friends. What examples of charity, and faith! I want ya'll to know that you represent the four friends in my journey to be healed. I couldn't do this on my own, you have carried me, you have climbed the roof, you have lowered me down at the feet of my Savior. If it is His will I will be healed.
If that doesn't kill me (sorry but that's the truth) then we move for a second bone marrow transplant. Transplants have a 99% success rate of grafting, but transplants after relapse only have a 25% chance of keeping someone in a long lasting remission. Not odds you want to take to Vegas, but we don't have much other choice.
Yesterday was pretty exciting I started getting red in the cheeks and then fevers and chills. Last night my fever hit 103 - I soaked through two shirts! The good news is that Tylenol seems to be working in bringing the fevers down.
For some reason only my sideburns are growing in. If I put on a baseball cap it looks like a have a head of hair underneath - I wish I could grow some huge lamb chops and really pull a gag, but that's probably not going to happen right away.
Had a neat visit yesterday, try to follow this; my cousin Mindy's, Husband's, Sister lives in a suburb of Houston and printed out some family pictures for us. She even framed them so we could put them around the room. It feels much better in here now. I can't wait to bring Kezman down when I get out of this joint, I miss that kiddo!
I pulled out my guitar and played her a couple songs and said, "That's all I can really give back right now." All I can say is wow, the kindness of others is truly humbling. I've been thinking a lot about the account recorded in the 2nd chapter of Mark regarding the man afflicted with palsy - a disease that caused night sweats, shaking and crippling of the limbs and often proved to be fatal.
Recently it was pointed out to me that there was no way this man could come to Jesus to be healed on his own, the record states that "four" carried him. When they arrived at the house it was too full to get him through the door - did they give up on their friend - no, they climbed up on the top of the house, pulled the roof apart and lowered him through!
We often think of the miraculous healing that followed, but I want to focus on these four friends. What examples of charity, and faith! I want ya'll to know that you represent the four friends in my journey to be healed. I couldn't do this on my own, you have carried me, you have climbed the roof, you have lowered me down at the feet of my Savior. If it is His will I will be healed.
I love reading your updates. You're positive yet candid nature, mingled with humor, are refreshing and inspiring.
ReplyDeleteBeautiful posts that I'm catching up on! I am thrilled that you are being so well taken care of in Houston and wish you a happy reunion with your Mom and little boy soon!
ReplyDeleteMr. Mathers and AJ-
ReplyDeleteI just wanted to let you guys know I'm still thinking of you... all day. I wish I could fly out to Houston to hang out with my two best friends/mentors/amazing older brother and sister. I'll try giving you guys a call later on tonight. I want you guys to know, I'm STILL praying for you on a nightly basis.
Hang in there buddy! We still have some guitar lessons to catch up on, followed by an amazing jellowich :)
Your friend,
Carson/$killz
Hang in there my friend. My 4 year old son just started Blinatumomab for the second time yesterday. The first time he was MRD negative in about 2 weeks. A few months after his stem cell transplant, his ALL all came back with vengeance. As of last week his bone marrow was 95% leukemia! We're also hoping for a miracle for him. We don't know how he'll react with a new immune system though. We're hoping though no fevers yet! (At his age, hoping for no sideburns, though he does have a full head of hair.)
ReplyDeleteSomething you could ask your doctor is whether they would allow you to do Blinatumomab long term, like 12-18 months. That is what our doctors are trying to do. Apparently it's shown some promise. Just a thought.
I appreciate your outlook and your faith. It's hard to see a loved one go through something like this and I can totally empathize with your wife and son. I too know that we have done all we can and so many people have "lifted us down through the roof" so-to-speak. We don't know whether our little Ethan will be healed, but we do know that God has a plan for him and I know God has a plan for you. Have courage. Have faith. Know that your Father in Heaven is watching over you and loves you and your family. I hope Blinatumomab works for you!!
Merrill