Tuesday, June 12, 2007

The Final DLI

From beginning to end...Daniel donating.

Pheresis machine

Frozen cells

Infusion


I'm sitting in one of the treatment rooms at Siteman Cancer Center, getting a unit of platelets and some fluids before they bring up the frozen cells in a little while. The view from this room is similar to the one I had while undergoing transplant, so it brings back a lot of memories. Last November they were finishing up the apartment building across the way and I spent many hours watching men on scaffolds several stories high doing the window trim and other little things to complete the building. Now when I look out I see patio furniture on the balconies, and various sized curtains on each window, reminders of time passed, reminders that I am still alive.



We came into today with a lot of concerns due to the trend my recent labs have taken. The doctor did a good job of calming our fears. Our continued prayer is that the chemo will continue to keep things in check (that the blast count will drop) and that this final large infusion of leukocytes will overcome the leukemia in my body. For now the plan is to continue with chemo again next month and as long as it proves effective, and I will also have a bone marrow biopsy/aspiration in a month. Not sure yet if we'll do that here at Siteman or locally at Ellis. I am tired of being a guinea pig at the teaching hospital, so the decision will be based primarily on who would be doing it at Ellis. I feel I've contributed enough to student education and I would just prefer to have someone who knows what they're doing and is proficient at it as I face the needles once again. The tenderness in my lower back (ichial crest to be specific) is constant, and I don't even care for pressure on the locations, so having it attacked once again is hard to accept. I know it is just the evil part of having leukemia. The doctor mentioned a few new drugs that may be an option for me if/when the Decitabine quits working. One is being used as a clinical trial here at Siteman, which I would qualify for. At this point the drug options I have left are all considered experimental so it can be a challenge to get insurance coverage for them. I am very thankful to Dr. Medlin and the Ellis social worker who managed to get Decitabine approved for me, as the out of pocket cost is over $20,000 per month. I realize insurance can make or break your survival, and so far our company has been exceptional, for which I am very thankful. I view it as another of the Lord's provisions on our behalf. We are not ruling out the possibility of a second transplant with my sister as donor, but that is definitely the worst case scenario.

As always, we ask that you pray that the DLI will do its job targeting the leukemic cells and not my body. Thank you for your continued prayer and support.

28 comments:

Pam said...

Isn't is surprising what you will notice that can bring back such a flood of memories?

You have such amazing faith and fight in you:)

Leslie said...

I'm so glad to hear that you're still hanging in there, fighting and faithful.

Isn't it amazing that as difficult and painful as your situation is, the Bible still calls it "light and momentary affliction?" You are inheriting a HEAVY, ETERNAL glory!

We'll keep praying for you!

Marc and Charity said...

Hello Amy, I've never commented before, I don't think? I just wanted you to know that I've read your blog since I found it last summer and have been praying for you and your family. You have encouraged me in my faith more than you will ever know. We are living overseas right now and to see you fight this is encouraging when I think I'm having a bad day. Thank you for your openess and honesty here. Just wanted to let you know you've got a family in Wales praying for you.

Blessings,
Charity

Jenn @ Friends of Heroes said...

Amy, I am praying as you ask - for the chemo to target the leukemic cells and for protection of the healthy cells in your body. Praying and believing in an earthly miracle for you and that your strength will be renewed daily! Your faith and courage is an inspiration to me.

Anonymous said...

Amy, thanks for taking the time to keep us all posted on what is going on. It helps us to be more specific in our prayers. We're still with you!

Barb said...

Continuing to pray for you, Amy. Thank you so much for keeping us current.

annb said...

It's interesting to see a bit of how the process works! I continue to pray for you and your family and know that God is carrying you through this difficult part of your life!
annb

Anonymous said...

Amy, Thank you for writing again and updating us on your treatment. It helps to know exactly how to pray for you. As I looked at the pictures, I noticed that the one of you looks like a younger version of your Mom. You look exactly like her in that one. My Sunday School class and I continue to pray for you daily. God is good, and He will see you through this. Keep trusting Him as you have been.

Love & Prayers,
Jackie

Dunn Family said...

Amy,
My mom was just asking about you tonihgt and about your next DLI. I told her I thought it was Thursday. Regardless, I have been praying for you all along. Thanks for sharing the pictures. You look great! Your hair looks thick and curly. Mine also came back curly, but is starting to straighten out a bit. I will be praying for the best possible results for you!
Love, Gina

Kim said...

I am praying, Amy. I have left a little message for you and others on my blog. Just know you are on my heart and I will continue to pray!


Thanks so much for the recent updates!

kim

Linds said...

How interestign it is to see the photos, Amy, so we can know what is going on. Prayers continuing.

Mississippi Girl said...

Continuing to lift you up on prayer, Amy!
Jennifer

Colleen said...

You remain in our thoughts and prayers, Sweetie! May those little lymphocytes do glorious battle on those blasts!!

With much love,
Colleen for All

Rachel said...

Hi Amy. Thanks for the update. What a precious brother you have!

I continue to pray for you and uplift you to God. So many people are praying for you and I know He's listening! God Bless!!!

Christy said...

Hi Amy -- Checking in on you often and praying.

April said...

It is amazing that I continue to come back and read your updates and continue to be blessed by what God is doing in your life. I continue to pray for you and am thrilled when you list specifics.

You continue to inspire with your faith and grace in the midst of chaos and uncertainty...May God continue to bless you in every possible way.

Monica C. said...

Amy, I will continue to pray for you. Thank you so much for sharing your update with us - especially the pictures. You really look good, and it was nice to see your smile. We're all praying for you!

Anonymous said...

Amy, praying specifically for each of your needs, all my love, you are a fighter and God's eyes are always on you.
Proud to be your sister in Christ
April Martin

Tamara said...

I make sure to read your updates regularly and because of that I feel like I know you. So, it breaks my heart that you're going through the tough stuff again but praise the Lord that you are alive! May God be glorified in the upcoming days, weeks and months through you and your family!

Tammy C said...

Thanks for the updates.Will continute to pray for you.

amber said...

You are so brave and such a trooper!

annie said...

You're in our prayers Amy.

Anonymous said...

We thank God for the wisdom he has provided your doctors. We thank God for giving doctors, nurses, technicians, and scientists the knowledge to fight off cancers like this one that has attacked your body. We thank God for the engineers and medical manufacturers who make the equipment to extrude bone marrow transplant cells from Daniel, preserve them while in storage, and then implant in your body. We thank God for social workers and physicians who work often, and even greater miracles, with insurance companies. We thank God for making simple things happen which bring to mind times past, for the things that press our memories back into service, and remind us of good and even bad times and reminding us of Him and His mighty works. We thank God for Brandon who loves you and takes care of you and Gary. We thank God for your mother, father, brothers and sisters who faithfully help you without complaint. And, we thank God for you, who shows us what it is like to remain faithful in times of trials and dispare.

We ask God to relieve your back pain, to cause this transfer of cells and platelets to begin their healing work with His blessing for improved health and final healing of your leukemia.

Stay strong always,
Uncle Clif and Aunt Karen

J said...

I'll add my thanks in with the other for your updates; they are very encouraging to me, and a great help in prayer.

I'll continue to lift you all up in faithful prayer.

Anonymous said...

Amy, you look great! I appreciate your outlook, literally and figuratively. Looking at that building and stating that you are still alive, and resisting what must be the constant temptation to envy those whose lives are, to you, proceeding "normally". YOu are right on about the teaching hospitals, they are draining when one has been fighting the disease as long as you have, and I think it is a wise decision to go where you are most comfortable. And God bless that insurance company! Emily and James received a letter from their at the end of April stating they would no longer pay for her hospital stay. Needless to say, the doctor appealed that decision!!!! Thanks for keeping us updated! Livi's grandma!

gold said...

Still praying for you.

God bless you!

Leigh said...

Amy,

It is such a blessing to read what God is doing in your life. I think about you daily and I am praying for God's healing.

God Bless!
Leigh Taylor

Anonymous said...

You look like Napoleon Dynamite.