Sunday, August 24, 2008

WBC = .8/ What's Happens Now?

Johnny's afternoon labs showed his WBC down to .8! His blast count is also dropping, and is down to 19%. So he doesn't have many white cells left, and of those he does have only 19% are cancer blasts. As nasty as the Clofarabine is at least it is working against Johnny's AML. I'm excited at his progress, but I hate to see what this chemotherapy is doing to him. Johnny's hands and feet are very swollen and dark red. It looks like he's been soaking them in boiling water. I wouldn't be surprised if the skin starts coming off soon. He has to be in a lot of pain, but he won't complain. I know his feet hurt because he can't stand at all, but I usually have to make him push the button on his morphine. If it was me I would hitting that thing as often as possible. I would also be crying like a baby, but I don't think Johnny has shed a tear or complained once during the whole three + months he has been in the hospital.

So what's next? Getting Johnny's WBC down was just the first step towards a bone marrow transplant. Now we will have to watch his counts closely for any indication that the AML is still active. The doctors are pretty confident that the Clofarabine has pretty much wiped out his marrow, so they doubt that will happen, but this is Johnny so nothing can be ruled out. Our next priority is to get his spinal cord clear of blasts. His next spinal tap (LP) will be sometime tomorrow, and he will get a combination of three chemotherapy drugs. They usually only use one at a time, but at this point I would be cool if they threw the kitchen sink in there also. Nothing should be held back. If tomorrow's tap is clear he will still need to get two more LPs to make sure there is nothing hiding in his spine. If he stays in remission, and we get the spine clear Johnny will be "rushed" to transplant. I say rushed because treatment for AML is typically several months, but in Johnny's case the doctors want to get him to transplant before his cancer has a chance to adapt to treatment.

Johnny's immune system is completely compromised at this point, and will stay that way until well after the bone marrow transplant. Apart from keeping his cancer in remission, keeping him from getting sick will be the major battle. If Johnny were to get another bacterial infection or a pneumonia it wold be very difficult for him to recover. He has fought these types of bugs before and beat them down, but he was much stronger then, so we want to avoid a rematch if at all possible.

Onward,

MR

13 comments:

Anonymous said...

Stay strong Johnny you are almost there. TRANSPLANT BOUND!!!!

Mike Julie Joey Johnny Sophie you guys are always on my mind and in my prayers. Love you. So glad to have you back on the 9th floor. Look for a good report on LP tomorrow.

Aunt Liz

Anonymous said...

Hey Guys,
We are so excited!!! Johnny (& family) you are amazing. We are praying for you everday. Thanks for keeping us updated we will be waiting for the next report.
Love ya,
Toni

carla isbell / carla isbell design studio said...

i continue to pray for more and more good news toward johnny's healing. stay strong!

x
carla isbell
carla isbell design studio

Anonymous said...

Johnny - Hang tough- You will and are overcoming the biggest hurdle yet!! We are praying and know that you will beat this!Onward is right Mike!! Onward and a cure!!!
Love and Hugs -

Rhonda Wes Becca -B and Russhole

Anonymous said...

Johnny,
You don't know me but I work with your Dad and have followed you for a number of years.

You are such an incredible young man and how you handle all of this is so inspriring to me and all those around you.

My prayer is that you feel better soon and that you are back to doing those things that you love.

Love, Nancy Kane Asmus

Anonymous said...

When I read this blog and hear how strong Johnny is it just makes my day. My routine now is to start every day checking this blog. I cant tell you what an inspiration your family is to all of. Keep figthing little man .
Love
Beverly

Anonymous said...

Johnny,
You are an inspiration to so many! You are so strong - you will get better! You've got an army of people pulling for you. Hang tough & things will get better. Wishing you the best always!

Anonymous said...

I have read the rules for the blood marrow donation online - but how do you register to see if you are a match for Johnny? It has to be through a private physician not the national registry because I want to do the direct for Johnny only. Who do we contact of see if we are a match? thanks, Brenda Harvell(Kim C's mom)

Anonymous said...

Someone please write a comic book or create a video game for this kid. No one is tougher or more inspiring, more of a hero than Super Johnny Romano!!! So happy to hear that the Clofarabine did what we were all hoping for and to hear that you guys are all back on the 9th floor. You are all in our thoughts and prayers everyday.
Love,
Craig and Kelly

Chick said...

I received an email by my little sister this morning about Johnny and my heart aches for him.

My older sis, debutaunt.com, is two 1/2 years out from her bone marrow transplant. That had to be the hardest time in our lives.

For sure, I would love to enter my 11 year old son in the skate boarding fundraiser, Sept. 27th. We live in NW Houston.

Take care you're in my prayers.

Jenna

Anonymous said...

C'mon Johnny....just a few more days and you get to the next level. You can do it. We are praying so hard for y'all. Johnny, Julie, Mike and the rest of the Romanos, y'all are my heroes!!!! Keep fighting. We pray for y'all 100 times a day.

The Bakers

Anonymous said...

Dear Johnny and family,

You guys are an amazing family. Not many in your position could do what you are doing and be so strong. Keep it up!
I have never read your blog before and I am truly overwhelmed by your journey.

Johnny, you are an amazing little Warrior. Best wishes for your upcoming Bone Marrow transplant.
My family and I will pray for you to fully recover every single day from today on. God Bless all of you.

Sincerely,
The Wisner Family

Anonymous said...

awesome!!!! i know you can beat this thing for good man!!your almost there.just keep on fight just alittle bit more and then the doctors can take over and really get that bad "little"monster gone for good,and no im not talking about sophie.only a couple more months till we're back skating again.and we will come visit you whenever your feeling better and cant get sick as easily.hang strong lil buddy and love you man

BIG BROTHER HEATH