Hello all,
I haven't written in a few, because I have been busy with family and I have been really tired the last few days. Predisone, a steroid that is used for a lot of different things, sucks to be on, but it sucks worse to be off. I helped with both my energy level and my appetite, both of which have gone down since tapering off of it. The funny thing is that if I get into remission and do the transplant I will be back on steroids in a few weeks. Up and down, up and down...it is enough to go crazy, but I'm not crazy clowns really are trying to kill me....
I do not have the greatest of all updates for you.
On Thursday we met with my transplant doctor, Dr. Miller. It was a long four-hour affair and I walked away with a headache and heartache. He told us that because my disease is so aggressive (as evidenced by the short relapse time, the inability to go into remission after the first four weeks of treatment, and amount of treatment I have already received) my chances of living without a transplant are zero. With the transplant, my chances of surviving 2-3 years are only about 20-25%. Each time something goes wrong, like if I am not in remission after my next biopsy, which is on Wednesday, my chances of survival go down. Despite this blow, we are pushing on and working towards the transplant.
If I do not go into remission, I will do a round of High Dose Ara-c, a chemotherapy drug. If this does not work the only option is an experimental treatment that only one other person has done…one in the whole world…luckily they did it at Fairview.
Obviously this is sober news, but the fight is not over, not even close. Send me your love, energy, and prayers and we will beat this thing together.
I love you all,
JJ
7 comments:
Hi JJ,
I'm looking forward to the day you will change your blog name to: JJremissionboy or JJnevergiveupboy and even JJhealthyboy.
I'm sending prayers. Keep going. "Baby steps, JJ, baby steps."
JJ,
I hope you enjoyed your family get together. I ended up at our 10 year high school reunion, where I had a great time. Everyone is a desperate loser. OK, that's not true, but it works for me. Many people send their love, and I hope they get a chance to swing by your blog. We'll have to get together so we can share stories.
I certainly wish you had better news to report, but we'll keep praying for you if you keep fighting. I agree with lively gran...jjsurvivorboy or jjbaldnotduetochemoboy would be a better address.
Hi JJ! Come on, keep fighting! You haven't seen Russia yet, and the country is waiting for you, so do get healthy and come on over! My thoughts and love are with you all the time as well as my Mom's and Dad's and my husband's!
You are one of the greatest people I've met and since we've found each other at least here in the net after 10 years you are to be a happy healthy guy travelling all over the world as soon as possible!
Love and hugs from over the ocean - Natasha
more love and prayers coming your way....once again you show our awesome spirit of survival. Thank you just for being you....from mom's friend Jane.
Hi JJ: Sorry you got such sucky news. No matter what happens, I hope you are comfortable and have FUN! Your mom is pretty fun, so I bet you and the rest of the family are too. I really can't think of anything profound to say, just wanted to let you know I'm thinking of you and hoping things go better for you. Hang in there. Your mom's coworker, Leslie
Hi JJ-
I am one of your brother Jason's friends. I wanted you to know that I have been thinking about you and will pray for you and your family. I am a nurse and have seen the power of people coming together and prayer- Your brother is so wonderful and has so much love for you- more than I have witnessed in a long time. I love your closeness as brothers Jason always talks about and pray for his wish and your wish to come true - I'll pray for you. -Stacy Blair
JJ - I'm your Mom's office mate at Children's and work with her on Healing Quilt stuff. She keeps me up to date on how you're doing. Even with the pain (wish I could take some of it for you) you sound amazingly strong today. I am thinking of you every day - donated platelets last week even though they're a different type. Go ahead and sleep 19 hours a day - sleeping is when you heal - but even while you're sleeping we are thinking of you. Marty L-H
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