Saturday, August 26, 2006

Barnes appointment & upcoming treatment plan




Yesterday was our trip to Barnes -- the Siteman Cancer Center, specifically. We got there about an hour early for labs and then met with Dr. Westervelt. The appointment was very informative. I was told that they do not actually know yet if I am in remission. The doctor implied that it is probably a safe assumption given that I am feeling better and my blood work looked pretty good yesterday, but he said they will need to do one more bone marrow biopsy to verify. Basically he said the previous biopsy was 100% clear meaning it showed nothing. They consider you to be in remission when they see normal cells and few or no leukemic cells. (I'm probably over-simplifying, but I believe that is basically correct.) He does not feel a bone marrow transplant (hereafter BMT) is necessary at this time. He said they have about a 30% chance of controlling the disease with chemo, and at this time that is a better outlook than doing a BMT. It is possible that we could look back down the road and say that a BMT now would have been the best route, but I feel God is sovereign over that as well, and trust the doctors He has given me and their opinions on the matter. I was somewhat discouraged to learn that I am facing more chemo. I admit I had gotten it into my head that I was done for now, and facing high dose Ara-C is really overwhelming. (Also known as Citaraban, which was one of the chemo drugs I had with induction therapy.) The same side effects apply, and my immune system will bottom out again, so the same possibilities for infection and just everything all over again basically. At this time I do not know the schedule for all of this. Dr. Westervelt said if I were having the treatment done at Barnes they would probably do outpatient -- six treatments every other day. He wasn't sure if the MU hospital would do the treatment inpatient or outpatient, so I have yet to learn more about that. I'm actually hoping it will be inpatient. If for no other reason than getting to see my nurses again, who feel like my long-lost friends! Dr. Westervelt will be calling Dr. Perry and giving him all of this information and we will proceed from there. I will probably contact Ellis Fischel on Monday or Tuesday to see about an appointment if I don't hear from them first. At this time I fully expect a biopsy again within a few weeks and for consolidation to start rather soon as well. But, I honestly don't know.

I think the hardest part about yesterday was just being faced with the solemnity of this disease. There is no happy, there is no cure. Even a BMT allows about a 25% relapse rate, and the potential for poor quality of life after a transplant causes us to wonder if it is truly worth it. Plus, there's a 25% mortality rate, so there are serious risks involved. For now, if I am not in remission we will work to get me into remission and then go straight to a transplant. Otherwise we will reserve a transplant for second remission if I were to relapse, which statistically is more likely than not. My parents were able to go to the appointment with us -- my aunt watched Gary in the waiting area for us. My dad commented something about it being nice that I was finally feeling well enough to be able to participate in the appointment, but at the same time it was like, wow, I'm finally feeling well enough to participate, meaning everything is really just starting to hit me, and I'm coming out of survival mode and realizing how majorly serious this all is. I am thankful that for now, most likely, I won't be facing a transplant. We're going to hold off testing my siblings for now as well. Each one has a 1 in 4 chance of being a match, so statistically I should have a sibling match. Thanks to an e-mail from a pathologist who has been reading my blog, we were able to clarify the information we had been giving regarding my cytogenics. As a result the doctor ordered an additional test (FLT-3) that can give us further information regarding my risk for relapse. We were very grateful for the information that allowed us to ask further questions and obtain more knowledge about my disease. The doctor also verified that I have subtype M4 with normal chromosomes, which we weren't sure about previously.

With each discouraging day it seems the Lord is great to bless us with encouragement. We found out yesterday that someone has arranged for a month of meals for us through Super Suppers. (www.supersuppers.com) One of the local employees, possibly even the owner I guess, just stopped by with a few entrees and an edible bouquet of chocolate covered strawberries. This is just one of the anonymous gifts we have received. Being unable to thank all of you personally, please know the extent of our gratitude. We have truly been overwhelmed by the generosity and love shown to us by so many, even so many of you that we have never met. We are also exceedingly grateful for the prayers offered on our behalf. My husband keeps reminding me not to get caught up in the statistics and lose hope, God is still in control, and He still knows my days. I want to be able to focus on His blessings, and the beauty of each new day, and not so much on the fact that my days on earth may be much more limited than I ever expected and that my plans are not His. I am so grateful for every minute I have with my husband and baby. Brandon is home this weekend, his first weekend off in about six weeks, and it is just wonderful to be together as a family. Gary is doing really well. I've seen him take a few steps now. His balance is improving everyday and he thinks he's big stuff when he stands up in the middle of the room and takes a step or two before plopping down. He crawls like lightning and gets into everything, so he keeps his momma busy. I love it though, and have been grateful for renewed energy everyday. It gives me hope that I can make it through this next round and hopefully be back to this point before the holidays. It is a long, hard journey. I think often of Pilgrim's Progress, and I told mom today that I dread walking back through the Valley of Despair, but there is a place of rest as well, and I know God goes with me through it all. I spent some time wallowing in misery the other night asking "Why me?" and Brandon replied, "Why not you?" The saying, "There, but for the grace of God, go I" came to mind. We talked for quite a while and just once again remembered that this is my path -- our path -- and that there is grace for it. I am thankful to the Lord for the gift of faith, because without it I don't think I would have made it this far.

I'll update again once I meet with my doctor here and have more information on the upcoming treatment. Once again, thank you all for your prayers and encouragement!

30 comments:

Anonymous said...

Dear Amy, Brandon, Gary, and Family

We are thankful to hear from you and of the trip to St Louis. We are also most thankful for your expression of faith and hope in the midst of these trials. We walk with you in this by prayer and thought but it seems so distant from being the help we would like to provide. We know the Lord is sufficient to comfort and strengthen as you have expressed many times in this experience. We know too you are in His personal and providential care now and always.

We Love You,
Don and Lilan

Anonymous said...

Hi Amy, So good to hear from you. I am continuing to pray for you and am happy to hear you are having some renewed energy. How wonderful that you are able to spend some time enjoying Gary and your husband this weekend.
Thank you for sharing your ups and downs through all of this and how you are trusting in the Lord through it all. God is good and with us even in the valley. I think it is great that you have this blog because you have been a witness to so many people.

Anonymous said...

The words of this song keep running through my head today and I thought I'd share them with you. Hope the Lord uses them to encourage and sustain you! Your testimony through this journey has been an encouragement to me. Know that the Lord is using you RIGHT NOW to strengthen the faith of many.

Thanks also for including a current picture of yourself. You look beautiful and your little guy is a doll. I have a little one just about his age - they are the most exhausting blessings!

In Christ,
Liz Bates
email.lizbates@gmail.com

HOW FIRM A FOUNDATION
Author: "Keen",1787, alt
Composer: Bernhard Schumacher, 1931
Tune: "Firm Foundation"

3. "Fear not, I am with thee, oh, be not dismayed,
For I am thy God and will still give thee aid;
I'll strengthen thee, help thee, and cause thee to stand,
Upheld by My righteous, omnipotent hand.

5. "When through fiery trials thy pathway shall lie,
My grace, all-sufficient, shall be thy supply.
The flames shall not hurt thee; I only design
Thy dross to consume and thy gold to refine.

7. "The soul that on Jesus hath leaned for repose
I will not, I will not, desert to his foes;
That soul, though all hell should endeavor to shake,
I'll never, no never, no never, forsake!"

Paulette said...

Dearest Amy, I LOVE the picture. It is beautiful of you and your baby.
You are still in my every prayer. We are in this together.
I have gone through this same exact treatment with my friend Linda so everything you talk about I know exactly what you are going through.
I am grateful you are having some good days, the good days will lead you through the difficult days and you will be able to see that there will be good days again which you already mentioned.
I am so glad you posted so I know how to pray. I admire your faith.
I know God will fulfill his purpose in you Amy.
You are loved.

Rachel Davis said...

Oh, Amy, truly a wonderful picture. Thank you so much for that.

A woman in our church was diagnosed just Thursday with cancer, and as she emailed details of her condition to the church body she included these verses. I thought I'd share them.

Love you,
Rachel


My times are in Your hand.
My God, I wish them there.
My life, my friends, my soul,
I leave entirely to Your care.

My times are in Your hand,
Whatever they may be;
Pleasing or painful, dark or bright,
As best may seem to Thee.

My times are in Your hand;
Why should I doubt or fear?
My Father's hand will never cause
His child a needless tear.

My times are in Your hand,
Jesus the Crucified;
Those hands my cruel sins had pierced
Are now my guard and guide.
(Based on Ps. 31; Wm. Lloyd)

Anonymous said...

Dear Amy,Brandon,Gary, and Family,

My thoughts and prayers are with you continuous.

In Christ,

Lynn Hensel
Grace Church of Columbia

Christina said...

I'm so glad to hear you are most likely in remission. It sounds like God says you are and if God says you are you are. Truly don't get caught up in statistics because I don't really think God cares about stupid statistics do you? I believe he makes miracles every day and you just may be one of the lucky recipients of one. My mom was diagnosed in 1994 with stage 4 breast cancer. She had a tumor bigger than a peach and she had it for about a year before she even said anything. Anyway she went to Sloan Kettering and she was told her chances were not all that great but they would try eveything. She had the lump shrunk through radiation, then her breast removed, then chemo. then Tomaxifan (or however you spell it) for 5 years. Anyway she went into remission pretty quickly and now she is still fine. She had her test last Wed. the one they do every year and everything was clear and good to go. They told her she is very lucky, I don't think so, I think she had just received a miracle. I pray for one for you to. I think God listens when many are praying for the same results and girl you have many praying. I will keep on and I think God is hearing all of us, we are probably making a bunch of noise up there and he's probably thinking Ok already I'll take care of this. Keep your head up and things will be fine. God Bless

Lawauna said...

Continually praying for your family.
Thank you for sharing that beautiful picture of you and your little boy.

God Bless

Lawauna, Rich and Michaela

Anonymous said...

Amy, you look so sweet! I mean it! Thanks for sharing the picture. Gary is really growing up. So good to see you are able to cuddle with him again. =)
As always, our prayers are with you. His mercies are new every morning!

Love,
Rachel E

Amanda said...

Yesterday I was at Women of Faith in Dallas. The arena was FULL. I have never seen so many women together. Nicole JOhnson did a drama about Breast Cancer but it could have fit for any type. I wish you could see this drama. I thought of you the entire time. Nicole took us through the process in her acting. Of course there is no way we could possibly know what it feels like unless we have walked in those shoes. But I saw thousands of women weeping. At the end, they asked cancer survuvors to stand. Amy it was the most incredible sight I have ever seen in my life. THOUSANDS of women standing. Then thousands of loud cheering. It was a moment I will never forget. I feel with all of my heart that you will beat this, you have overcome by the power of Christ! Hold on to your healing, don't let them take remission out of your vocabulary. I am so thankful for you and you continue to teach me so much. You are loved precious Amy, you are loved so much!

Tonya in KS said...

Amy,

Love, love, love the photo of your and your little man! How precious!

I'm am continuing to praise God in advance for your earthly healing. Your and Brandon's faith just amazes me and is such an encouragement.

I'm Believing God for your healing,
Tonya

Amy in AZ said...

Dear Amy,

It is SO WONDERFUL to know that you are with your little baby now--the picture of the two of you is just beautiful.

I will continue praying for you as you continue your journey!!

With love,
Amy in AZ

Anonymous said...

Amy,
I love you and am praying for you with all my being! I will send this information out to my prayer team and they will be praying for you also! I love you and believe that God is going to bring you through this and heal you completely!

Love,
Emily

Andrea said...

Thank you so much for the picture! Glad you are able to love on him again. I will continue to pray for you on this journey God has given you.

Barb said...

One step at a time, Amy, one tiny step at a time. You and Brandon have a lot in common right now if you think about it.

And you are beautiful. xoxoxo

allie said...

Dear Amy,

You may not know me (I am Christianne's penpal) but I have been praying for you in your journey through cancer. It has been so encouraging to me to hear about the faith and trust that you have in God.

I continually pray that God will bring you and your family comfort in this hard time of sickness and pain. And also that He would heal your body completely if it is in His will.

Much Love from Your Sister in Christ,

Allie

Anonymous said...

Dear Amy, We continue to pray for you as you walk with Him in this journey your on. I read this morning that our Lord test our faith. I pray you will continue to look up and believe what He says about you. He has a wonderful plan for your life and we recieve it for you. Bless you in the name of Jesus!!! love and prayers, Joe and marilyn Breshears

Stephanie said...

You and your family are in my thoughts and prayers.

The Flip Flop Mamma! said...

I just found your blog through another blog. I want you to know that I will be praying for you daily. I will also be keeping up with your blog, so I will know how you are doing, and know what to pray for. I can't imagine what you are going through.

I think our babies are around the same age. Yours is oler, I think.

Mine was born 12/08/05, and she's starting to crawl, she's pretty fast! She does the belly-crawl thing!

Monica C. said...

My prayer for you is that you would be able to *feel* God guiding you every step of the way along this journey. God bless you. You look great, by the way - like you really feel much better. God bless you!

Abby Ymker said...

Hi Amy,
I was glad to read your update today. I keep praying God's will for you. And no matter if each new curve in the road brings good news or bad that we all have the grace to sing praise to Him.
With love,
Abby

Anonymous said...

Amy and Brandon,
Thanks again so much for taking the time and energy to keep so many people up-to-date through your blog. What a blessing it is to see true faith revealed in your faithfulness and honesty in the midst of your pain. Our precious Lord knows exactly what you need when you need it -- He is faithful and all sufficient everyday...all day long (and night too:)! We pray you will continue to find strength and comfort in Him. May you be blessed and encouraged by those whom you are blessing through your trial. We are "praying without ceasing" for you all!

Our love,
Clayton, Lisa, Sadie, and Maggie

Anonymous said...

Dear Amy, Brandon, Gary, and Family

Your amazing faith, strength and determination is miracle we witness through the writings of your blog. We humbly offer you a prayer/song so dear to our hearts. We pray for your strength to endure the chemo, complete recovery,and continued good health.

"Be Not Afraid by Bob Dufford "

"You shall cross the barren desert, but you shall not die of thirst. You shall wander far in safety though you do not know the way. You shall speak your words in foreign lands and all will understand. You shall see the face of God and live.

Be not afraid. I go before you always. Come follow me, and I will give you rest.

If you pass through raging waters in the sea, you shall not drown. If you walk amid the burning flames, you shall not be harmed. If you stand before the pow'r of hell and death is at your side, know that I am with you through it all.

Be not afraid. I go before you always. Come follow me, and I will give you rest.

Blessed are your poor, for the kingdom shall be theirs. Blest are you that weep and mourn, for one day you shall laugh. And if wicked men insult and hate you all because of me, blessed, blessed are you!

Be not afraid. I go before you always. Come follow me, and I will give you rest."

Tony and Janette, Hayden, MO

Michael, Erin (Domer), and Parker Pfleegor said...

Amy and family,
May the Lord continue to bless you and strengthen you during this time. He is the strength we need and he does give strength and grace to his people! He is so good. You are in our prayers. We have a peace that passes understanding because we know the Lord is in control.
I'm glad that you are able to have increased energy to enjoy your time with your son and husband! You are in our thoughts, Amy!
Love,
Mike, Erin, and Parker Pfleegor

P.S. Psalm 27 has been extremely encouraging to me lately, so I wanted to share it with you, too!

"I would have fainted unless I had believed that I would see the goodness of the Lord in the land of the living. Wait for the Lord; be strong, and let your heart take courage; Yes, wait for the Lord." Ps. 27:13-14

DK said...

Thank you so much for the report. I'm a new blogger; only been at this about 3 weeks now and I've been seeing your picture everywhere! Many folks out here certainly do care about you and I'm joining that team! Have a restful holiday weekend and know we're praying for you!
DK Raymer
http://aflyoverblog.typepad.com

Barbie said...

So Many are praying for you Amy. May you feel God's abundant peace right now as the Body of Christ lifts you up in prayer. You are not alone in this journey.

Anonymous said...

Hey chica!! Been praying for you all day - can't wait to hear how the appointment went.

love you lots
~Catherine

Christy in TN said...

Still thinking of you ...

Tonya in KS said...

Amy,

Praying things are going well for you.

Tonya

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