ONE: Continue with this protocol. Because some of the numbers are so close to remission, Dr. Horton feels Johnny can continue this protocol -- it seems to be working, he's responding, why rock the boat? He would get a high dose of methatrexate on Monday, and probably repeat cycle two (which he's doing right now) until the transplant team has the donor prepared -- approximately 4 weeks. Dr. Horton will have to plead Johnny's case to the leukemia team and get their approval-- but only if the other test results are close to remission numbers.
TWO: Super aggressive. This is a trial that hasn't been approved by Baylor College of Medicine (TCH) yet, other hospitals are using the protocol, just not TCH. Approval for this protocol could take up to 10 days. This super aggressive path has really bad side effects like septic shock (no thank you) or death (we'll pass). Neither one Mike or I are ready for. But if you can make it past those two obstacles, you go to transplant and have a pretty good chance from that point on.
THREE: Aggressive. Clofaribine will be the only chemo and is extremely hard on the marrow -- recovery could take months -- which might also give the cancer time to come back as well. But if this one goes smoothly, Johnny will go to transplant when finished with this protocol.
FOUR: Go home with oral meds to keep the cancer at bay for as long as possible, with no chance of transplant. This option isn't even an option because the cancer would take over within two maybe three weeks. Every time he's had to stop treatment the cancer came back and progressed extremely quickly.
FIVE: Comfort care. Same results as four, but much, much faster, instead of weeks, it would be days. Neither are an option for us.
So that's what we are up against right now. I'm also going to check St. Jude's and MD Anderson to make sure we have exhausted all other treatment plans.
8 comments:
Whoa - quite a bit to digest on a Tuesday night. Stay strong;our prayers and thoughts are with you. We love you - hugs to all
Rhonda, Wes, Russ-hole and radical rebecca
I like only option number one. I hope Dr Horton has alot of pull. As always you guys are in my thoughts and prayers
Aunt Liz
So many options...I know you guys will choose the right one for Johnny. All crossables are crossed and praying for the J-Grom's super fast recovery.
Hugs to your family,
Christina Miller-Nichols
Stay strong, you're an amazing family, and a lot of people you don't even know are following your story.
My family and I think about Johnny every day. My sons ask me for updates on him all the time, and we wear our JR superkid shirts with pride.
Take care,
tom
http://tomledin.com
Option 1
Run, Dr. Horton, Run!
Johnny is my hero!
Love to all. You are in our thoughts & prayers daily.
Pops
We were not sure about treatment when my daughter's leukemia came back. I contacted Duke Hospital in Durham, NC and am so very thankful I did. I can't express how amazing that hospital is and the entire team for that matter. I took the liberty of sending you the link in case you want to check them out. We will be praying hard for Johnny to achieve remission and kick cancer once and for all.
http://www.dukehealth.org/Services/PediatricBoneMarrowTransplant
Wow, I get up every morning and check the site to see any new developments and before I go to bed and in the middle of the day I do the same thing. You guys are in my thoughts and prayers 24-7. I just feel positive vipes from the Romano's. We are going to kick DUPA this time around. Johnny you gotta teach me how to ride the board --that is on my belly not my feet! Can't afford a broken tail bone again! Love Clare
All my love and positive thoughts are with you guys. You are in good hands. Stay strong. Hugs, Pam
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