Friday, August 22, 2008

STEADY

Not much change today -- everything seems pretty stable -- which is good.  Maybe slightly better than yesterday as far as the vomiting goes.  The doctors put him on a rotation of 4 anti nausea drugs scheduled to overlap one another so he will always be covered -- which seems to be doing the trick.

His mouth is a mess-- swollen, bleeding gums -- but when we ask if they hurt, he says no. Which is really hard to believe from the looks of his mouth.  Although with all of the nausea meds, maybe he doesn't notice the pain because he's sleeping most of the day.

The last labs showed a WBC of 15 -- almost a normal number!  I know the doctor's advised me to not get too hung up on the blast count but I can't help it -- it was 86%.  Johnny was due for another LP(lumbar puncture) yesterday but because of his high heart rate and breathing and the sedation used for the procedure, the doctor's decided to wait until the numbers dropped. The leukemia team also discussed the chemo options used for the LP's.  Usually it is either methotrexate or ARA-C but because Johnny is Johnny they don't want to take any chances and are thinking about using both chemos plus a steroid. I'm sure we will find out more during the morning rounds.

Late this evening our friend Jim T. flew in from SFO to hand deliver some stuff he made for Johnny:



Even though Johnny was pretty much out of it for most of Jim's visit, every once in a while he would open his eyes, check out the deck then fall back to sleep.

11 comments:

Aimee said...

I know he can't wait to use that awesome looking deck!! WOW!! How cool!! We are in the process of scheduling a blood drive. Give Johnny a hug from me and hang in there...... he is going to WIN this battle!!
Love,
Aimee

Jennifer said...

STEADY is my new favorite word. I'm glad to hear it. Johnny's deck is amazing -- just like him!

XOXO

Jennifer and Allen

Anonymous said...

Sounds like good news to us!!!! Praying and keeping our fingers crossed!!!! Come on Johnny, we know you can do it!!!!

Y'all are always in oour thoughts and prayers!!!


John and Cyndi Baker

Anonymous said...

Jim T.YOU ROCK! How cool is that. I love the deck. Johnny we are continuing to pray for you everyday.

Lots of Love,
Spence Family

Tammi said...

I don't know your family but I am touched by your story. I'm a TNT participant and I am heading out this morning to donate Platelets for Johnny. I'm A+ blood type so I'm really excited that I can help. My little sister has Leukemia so our family has been where you are. It's a rough road but know that we are praying for you and will do anything for your family!

Anonymous said...

Keep fighting the good fight ... you are AWESOME!! Keeping you in prayer daily, Lonnie

Anonymous said...

Jules, you said it..."Johnny being Johnny.." :-))) He is amazing and is such a fighter. The deck fits him perfect!!! I love all the vibrant colors. Hang in there Johnny! Our prayers are with you.

We love you!
De, Aunt Sugie & Uncle Sig

Anonymous said...

What an inspiration to all of us who have been keeping up with Johnny’s story and the strength and determination of the Romanos. You are truly an amazing family! My thoughts and prayers are with all of you as you fight this battle. You have a huge fan base at ConocoPhillips. A group of us donated blood yesterday designated for Johnny. Several of us were first time donors and what a great feeling it was to be able help in a small way. Keep up this fight – we are with you all the way!
Linda Schamble

Anonymous said...

I also do not know your family and am a TNT participant. Johnny and your family will be in my prayers. I will be going today at lunch to donate blood with some friends.

Krystal

Anonymous said...

YIPPEE!! The tide is turning in your favor Johnny, and don't you EVER give up the fight!!! You are truly an inspiration to so many and I continue to pray for you and your family (who are all awesome!)

Susie Deason

Anonymous said...

Unbelievable art work..what a gift!

I am praying for you guys, and I am as close as your phone if there is ANYTHING I can do. Sam and I are going to provide a directed donation for Johnny; meanwhile, we're praying for strength, comfort, peace, and healing.

Love you guys, cy