Monday, February 2, 2009

Wow.

I think God is really testing us this time. I'm very anxious about tomorrow's visit. I am hoping we are able to get some answers to our questions, however, we don't even know what questions to ask. I've spent a lot of time today researching MDS (myelodysplastic syndrome or pre-leukemia) and AML (acute myeloid leukemia) and I can honestly say I'm more confused. I'm understanding the biology and process of it all, but I don't feel any more comfortable one way or the other as far as treatment goes. It's so hard not to have a cut and dry answer. You would think she would either have leukemia or she wouldn't. I wish it were that simple.

Here's what I've gathered so far:

Olivia has MDS, however there are 5 types of MDS. We don't know which type Olivia has.

The doctor is saying that Olivia has MDS, and it may go away and then come back again (which is apparently what is happening now. She had it in May and it is back) or it will evolve into AML.

AML is an extremely aggressive form of leukemia, so the faster treatment is started, the better. Understood. But she technically doesn't have it, yet.

MDS can be controlled through frequent blood and platelet transfusions, but those pose certain health risks and it is not necessarily a cure.

Chemo treatments for AML are very aggressive, lasting from 6-9 months. There would be 6 intense cycles of chemo that would be given every 28 days or so depending on her health and her blood counts.

From what I understand, she could undergo chemo treatments now to get rid of the MDS, but there is still a high chance is would come back again.

And the think that gets me the most...an article I read states that "...the majority of patients, roughly 70%, never develop leukemia. In other words, MDS shortens life in some patients but not in others. Eventually 70 to 75% of patients with MDS succumb to either complications or progression to AML."

What?

Anyway, we are holding on to the fact that Olivia is feeling marvelous and looks great. The girls and I are going to stay with my parents tonight since Olivia has to be at the hospital at 7:30 in the morning. The boys are staying back so Zac and get Jack to school in the morning. The day starts with some labs, then to a GI study, then to meet with the general surgeon about the G-tube, and finally to St. Jude to hopefully get some more information. It would be great if the results were back from the biopsy, but we aren't getting our hopes up. I'll try to post as soon as we get home tomorrow night.
So, we are going to pray big tonight. We are going to pray that the doctors are able to give us some much needed information. We are going to pray for the strength and guidance in the decision making we have ahead of us. And we are going to pray for comfort and confidence in the decisions that we do make.

PS - the doorbell just rang and Olivia got the cutest "feel better soon" balloons from a teacher at the high school and her husband. How sweet is that! People are so wonderful. Thank you!

10 comments:

Hotz' said...

We will be praying for little O!

Also, Cadence really liked O....I think the two of them could get into trouble together in a few years. hehe.

Dana said...

Praying for your family and miss Livvy extra hard tonight! You guys are some of the strongest people I know.

Dana -PICU

Anonymous said...

You are in our prayers. I guess the not thinking about it thing isn't workin', huh? God grant you the peace that passes all understanding.

Be still, and know that I am God. Psalm 46:10

Fear not tomorrow, God is already there.

Kathy Burdick

Anonymous said...

Olivia--hoping and praying that your day goes smoothly for you and everyone else involved!
Laura S.

Kim said...

Praying for all of you as you wait for the results! I hope you are able to get some answers and peace of mind about the best treatment for Livvy.

~Kim
PICU

Anonymous said...

Julie-

Hang in there. No matter what the results show or whatever treatment plan is decided for Livs, know that you have a tremendous number of people who love you and will be with you every step of the way. I know I am speaking for many, if there ever comes a time that you need a shoulder to cry on or need some words of encouragement, you won't have to look very far. You are surrounded by many people who care so much about your family and love Livvy like she was our own. You truly were blessed with a precious gift from God.

Sending big prayers your way
Bethany, PICU

Anonymous said...

We are praying for all of you and look forward to seeing how God is going to work this one out. He is able to do more than we can ask or think! Oh yeah.....we love your music choices, too.
Sally L

threekidchaos said...

Praying for answers & peace & confidence in the path you will choose.

Whatever you need, just ask.

Kristen

Anonymous said...

I could go on and on about how God is going to be faithful to see you thru this and that's true, I know he will. He already brought you this far, but the truth is that I HATE this for you. It stinks and I'm so sorry that you're walking down this road again! So we're praying specifically for some clear direction for you and Zak and for all the medical professionals involved. Sounds like today is going to be a big day, so I'll be praying throughout the day!
Love, Judy

Liz Miller said...

Hello Chatts! I cannot begin to say how much we are always praying for Olivia. Our faith is strong in knowing that everything will turn out great. We miss our old neighbors so much. All of you please take care

Liz and Jake