Onward,
MR
Tuesday, August 19, 2008
Clofarabine
Julie and I just had a very difficult discussion with Dr. Dryer and Dr. Muscal. Johnny is not responding to the chemo protocol, and his WBC is rising again quickly. Unfortunately we are just as quickly running out of treatment options. Johnny has been through so much these last three months, and both doctors said it would be understandable if we chose not to put him through any more, and just try to make him comfortable. On the other hand, Johnny is still alive, and as long as he is Julie and I would like to give him every chance possible to stay that way. This is really the answer the doctors were looking for, and I could tell there was some relief knowing that we were not ready to give up. There is really only one last drug to try; Clofarabine. This is the drug of last choice because it is very toxic, and is very hard on the bone marrow. Children have died from infections and other complications caused by this drug, but about 20-30% of the kids who get it go into remission. Those odds don't sound good, but his odds of surviving without this treatment are zero. Johnny's WBC is heading up quickly, so he will begin five days of treatment with this drug starting tonight. We should know if it is having any impact within a day or two. If it has the intended effect Johnny could go to transplant within the next two weeks. Complicating the matter is that during that time they will also have to clear his spinal fluid of any blasts. Johnny may be able to go to transplant with some residual cancer in his marrow, but they will not allow a transplant if he still has cancer in his spinal fluid. Everything we are doing at this point is in the attempt of knocking the leukemia down long enough to get him to transplant. The odds are not on his side, but Johnny has continuously surprised everyone with his strength and resiliency. Lets pray he has at least one last surprise up his sleeve.
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57 comments:
Thinking about you all every day and sending lots of love your way from Olympia. Keep fighting Johnny!
Your friend always,
Superhaole
Johnny continues to be in my thoughts and prayers. My very best to you and yours.
Please God, let this work!
Angela Paschall
FIGHT! Mike and Julie y'all are tough as nails, so it is no surprise where Johnny gets it from. Keep Fighting!! Johnny has an amazing will to live, which medical science can not factor into their probabilities. I am praying for you Johnny.
Barry B.
You don't know me but I'm getting on my knees right now and praying to God, who calls himself Jehovah rapha (The Lord who heals), that he heals your sweet boy. I will pray that God will give you his peace that transcends all understanding and wisdom to his doctors.
Psalm 145:18
You can do it johnny your one tough kid fight it man fight it!!!!!!!!!!!!!!!!!!
Russell
Johnny is a special child of God and is touched by his hand. He will fight this fight; his inner strength has no bounds.
Keep the faith - we are praying and that circle of love and prayer only grows.
We love you -
Rhonda and Wes and the crew
Mike, I am praying for your son Johnny. There is a God who is still in the healing business. I know he can be healed in Heaven but I want to see him healed here! Our church is also praying for you and your wife. Be strong in the Lord and in the Power of His might! God Bless,
Kevin Kleinhenz
Johnny keep fighting...you have proven them wrong before and you will do it again!!! Remember you are the toughest guy we know. All of our thoughts, prayers and positive energy are yours....use them Johnny!!! We love you very, very much and know that you will soon be out "rollin" around with the gang!
love,
Kim, Heafy,Ellie,Hunter,Todd and Cameron
You do not know me, but my son Anthony Boening was in the 4th grade with Johnny in Ms. Severns class at Oppe. My son was part of the picture the class took for Johnny on the last day of school. Anthony asks me all the time "how is he doing"? Anthony understands that he is sick and worries about him. I kept up with his progress and tell Anthony that Johnny is a fighter. I just want you to know that we are praying for Johnny and hope that this drug works for him. We will keep you in our prayers.
God Bless you.
Sharon Boening
We will keep Johnny in our prayers every minute. You are a strong family , keep fighting.
George, Barbara, Ben and Clare
Herrera
Mike and Julie,
My prayers are with you, this has got to be the most difficult decision you have ever had to make and I know as a parent, I would make the same decision. Johnny has fought and will continue to fight. We will pray and continue to pray that God will heal his body and make him whole again so he can surf and skate board.
God bless the whole family,
Brenda
C'mon Johnny and Family, you guys got this!!! Johnny is the toughest kid, wait, scratch that, PERSON I have ever come across in this lifetime. It's just another bump in the road. It comes down to this because when he's better, he doesn't just wanna say, "hey I beat cancer", but rather, "it was bottom of the ninth, full count, bases loaded, and I knocked it out of the park!" My thoughts and prayers are with you guys continuously each and every day. You guys gotta be strong for Johnny because he is so strong for all of us!
Nick@ Fallen
Keep Fighting, Your in my constant prayers and we know you can beat this!!!
Johnny is in our prayers, Johnny is a tuff kid and will get thru this. Mike if you need anything let us know. Byron
As one of the many people who have taken care of your wonderful son, I just wanted you to know that we are all thinking of him and praying for him. We are all Johnny Romano fans.
There are so many prayers continuing for Johnny and your family. Please let us know if you need anything at all.
Becky Falgout
We are praying for you daily. Johnny you can fight this!!!!! We love you.
xoxo
Fox family!!
Johnny & all of you have been and will continue to be in our thoughts, conversations, hearts and prayers everyday.
We are here anytime if you need anything.
Our love ~ the Buckalews
Sandy/Butch & Brian
Mike and Julie, Johnny continues to be in our thoughts and prayers. I just know he will give this fight everything he's got. There's a powerful rain of prayers and positive wishes raining down on your family right now. We will continue to lift you all up in prayer.
Donna and Juan
Still here, still praying, still believing.
Johnny and Family,
We know that ya'll can get through this...keep fighting! We are all sending positive thoughts your way!!
The Beres Family
It will work!!! He is a fighter and will beat it!! We are all thinking about you and your family. Thoughts and prayers from our Oppe Family!! Dan and I are thinking and praying for you. Love you guys!! Hugs and kisses.
Aimee
Hey Johnny! Come surf with me soon! Next time we go to paint ball we will whoop up on Hunter.
love,
Ellie
Hey Johnny,
If anyone can beat this you can..we are betting on you and the rest if your family!!!!
We are praying for you guys!
Love ya,
Toni, Wes, Sarah and Weston!!!!
johnny, your family, and the physicians are in my daily prayers.
i pray this drug is the path to his recovering health.
x
carla isbell
carla isbell design studio
Johnny will continue to fight and beat this!! For this I am sure, but to help in his fight, I will keep him in my prayers and I also have sent out a prayer request for Johnny, to a group of men who I pray with regularly. Their prayers will shower Johnny and your family with God's graces. God is Good! All the Time! - Chris P.
My heart is heavy as I read the recent post. I'm so sorry to hear about your situation. It's sometimes difficult to understand why things happen the way they do, but I have faith that you will fight this and come out stronger and better than ever.
Stay stong Johnny!
Johnny's full recovery and healing are constantly in my thoughts and prayers!
Hugs,
Christina Miller-Nichols
Hey Johnny and Romano Family,
Love you all and pray for you many times each day. Your strength and faith is an inspiration to all of us. Love you SuperJohnny
Clare
Praying now. My daughter Gracie and I. Please Lord, bring strength for Johnny.
The Wehr Family.
Mike And Julie,
The whole Leal family is keeping Johny and you on our prayers, you are an inpiration an example for a lot of people around you
Keep the faith!
god bless you
Jose and Elizabeth
hey Johnny man you got this you can beat it. i've met you only once but you are such a insperation! keep fighting it.
man im praying for you .
-Davy herrin
Keep fighting Johnny, You can do it!!!!
Many positive thoughts and prayers. There are many prayers from Southwest...including mine. We love you very much and are praying for Johnny to do what he does best, overcome!!!
Love,
Steph
Keep up the fight Johnny, all the skaters here in Houston are rooting for you man. Take care.
-Jeff Gilmer
Get well soon Johnny, you'll be skating in no time.
johnny! there's no doubt in my mind that you're going to be alright. us skateboarders have a tendency to pull through whatever obstacles we face and you're no exception. you have the heart of a bull and the will of a skateboarder. seeing those pictures of you with that big smile on your face tells me you can overcome anything that comes your way. the odds are against you? forget that man. the odds are always against skaters like us but hey we keep at it and in the end we come out victorious and thats exactly what you're going to do. once you're better come over to miami and come skate with me and the whole crew. seeing you keep at it is such an inspiration and i'm going to skate harder for you man. i'll push through more sidewalks, ollie harder, skate faster, you name it. stay up johnny. i'll see you soon.
We pray and think about you every second of every day. We love you guys.
All of our prayers and positive thoughts are with all of you...
Laura, Alex and Lexi Makris
Julie, keep fighting. God has so many good things planned for Johnny here on this earth, I can just feel it. Look at all the people he has touched. So many people praying for a little boy they don't know or barely know. You and Mike are doing the right thing. Your outcome will not be like mine. I know that this drug will work, I have to believe that. Know that Johnny and all of you are in my prayers. I'm about to pass this blog along to some close friends so they can know Johnny's story and pray for him.
Much love and prayers,
Lori Mahan
Johnny, you are such a fighter and have so many guardian angels above looking down over you ....and so many here who love you.
SMILE!!!
WE LOVE YOU JOHNNY!!
Dena :-)
Johnny,
We are thinking about you and keeping you in our prayers. There are lots of people that you don't know and have never met that have you in their prayers. We know God will give you the strength you need. Take care of yourself,
Your Friends at The Blood Centers
We are in our thoughts every day,every minute.
baxter,and family
Johnny a really big hug and so many prayers ----
Thinking of you Aunt Sugie and Uncle Sig.
We are praying for you guys. Like all other superheroes, Johnny will turn the tide when it seems the bleakest.
Conrad and Tara
Miracles happen every day.
Today is your day.
We love you guys so much...
Jason, Rene & Nick
"There is no chance, no destiny, no fate, that can hinder or control the firm resolve of a determined soul."
You can do it Johnny, Mom & Dad.
Please, please, please let whatever force there is in this world help those bad cells go away. Johnny has the will power to get through it. Hang in there buddy.
All my love, Pam
Love, prayers, faith and hope for all of you.
Trish
Everyone is pulling for you Johnny! I have no doubt in mind that you will surprise those doctors again.
Missy
the colombos are praying for God's grace for ya'll. The kids send their love and are saying frequent prayers. Stay strong.
Johnny is going to be one of those kids that fall within that 20-30%. He is a miracle maker and is going to make yet again, another miracle happen. Stay strong and keep fighting Johnny!!
Sending all of you are love,
Craig and Kelly
Stay strong Johnny! You're in our hearts and prayers. We believe that you're in the 20-30% of kids that can kick cancer!
With love,
Bryce and Donna Kanights
Hang in there, Johnny!
You have been an exception to every rule, the smile on faces unseen, and the spark in hearts that never knew there was fire.
Courage can be defined by your spirit.
Hope is the breath we all wish to give your precious lungs.
Let our faith in you and Him be your continuing heartbeat.
Let joy be found in your smile once again.
Continued prayers to lift you high...
G Scott
Keep throwing the left jabs Johnny! My family and I are praying for ya buddy!
The Debowski Clan in Conroe
Keep up the good fight!! Don't give up as we are not giving up on you, Johnny!
Galveston wants you back home!!!!
YOU are the kid that can BEAT this Johnny. I pray that God continues to give you the strength and the courage that you need to BEAT this.
Connie Lawrence
Johnny,
The Hopkins clan keeps you in our thoughts and prayers every day! You are a special young man who has touched and captured the hearts of so many. We are all ready for you to feel better soon, and we rebuke those horrible cells which are making you feel so badly.We send our strength through prayer to help you fight them off. You are the Warrior Johnny .... and you WILL WIN!!!
Love to you and your family,
Mary Sue, Brett,Kris,Sarah, Kyle and Paige.
I found your blog by a Google search. You don't know me. I don't know you. But you should know that my father received Clofarabine in January. It killed his bone marrow. After that he could not make his own platelets. No platelets meant no chemo. He died August 13. It is a very dangerous, toxic chemo that should only be used as a last resort. I will pray for your family.
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