Sunday, October 22, 2006

Transplant...

It is so nice to be home again. My doctors gave me a gift of a photo the day I left and the entire team signed it on the back. Such a touching gift! Even more so the ability to be home. It is a sobering thing when a doctor tells you he is glad you are going home because there were a few days they weren't sure I would be. This last round of chemo hit me really hard, and I am grateful to the Lord for bringing me through it. I don't express the extent of sickness in my blog posts, mainly because I don't post when I'm sick. I don't do anything when I'm at my worst, and days go by that I don't even remember afterward.

Friday at Barnes was exhausting, but productive. My brother, Daniel (17), is my marrow donor. I ended up with four perfect matches (I know I am blessed in this) but he is the oldest, so they chose him. Between the two of us we had several different lung and heart tests done, and about 30 vials of blood drawn. I also had a bone marrow biopsy. I believe it was number six since July and I am very, very weary of them. This particular one is lingering in pain to the point that I filled my synthetic morphine prescription to hopefully aid in the pain that Tylenol is not touching. I am also still in a lot of pain from the placement of my new "Hickman." Technically it isn't a Hickman, but it is so similar to my last one that I am calling it such. Anyway, back to Barnes, I'll be going in for transplant within the next month. I see Dr. Westervelt again on Friday and we will go from there. I need to put some weight on and we also need to wait for insurance approval for what is about a half million dollar procedure, thus the delay. My brother will receive Neupogen shots for a few days and then they will harvest the marrow using what one of my doctors referred to as a "cream separator" on day five. The same days he is receiving shots I will be receiving two days of radiation, and two days of a rather intense form of chemo. Both cause infertility, so I have been dealing with a lot of emotions. I am trying to constantly remember that God has us, and this is all within His plan. My husband got a new CD the other day by a band he likes, Stavesacre, and one of the lines from a song stood out to me:

I'm not looking for a reason to believe. I do. I breathe, that's enough for me.

That's how I've felt the past months. Just a deep trust that God has us, even though there are days when my faith is weak. I will admit I'm scared of what is coming up. I had to sign off on a very detailed consent form for the transplant, and it isn't going to be easy. Knowing how sick I will be, having just been there, is so hard. Knowing I could die, or knowing there are things worse than death, such as severe GVHD, are really hard to deal with. Oh, I know there will be grace for it, but right now I am scared, and I am just really, really wanting all of this behind me.

I am so, so thankful for my brother and his willingness to sacrifice for me. It is an amazing thing to think that I will basically be him by the end of the year -- his DNA running through my blood. I am blessed to live in a time when we have these options, when I have a chance to live. When I have a chance to possibly be "cured" to the extent that leukemia can be cured. We're also blessed to live in a time in which harvesting marrow is a rather simple procedure. It used to involve a bone marrow biopsy in which the patient was put completely under anesthesia and marrow was aspirated about 80-100 times. Having had about 3-4 aspirations per biopsy personally, if you weren't under all the way, I think it would kill you. The worst of it for him will be the 4-6 hour harvesting procedure, and possibly the Neupogen shots. I've been on Neupogen for about three weeks now, but he will be receiving a much higher dose, and it does have some painful side effects. (Bone pain, headaches, etc.) In fact, they sent me home with a seven day dose of shots which Brandon has been giving me each day. This has certainly been an exercise of trust with our marriage as we learn even more about the "in sickness and health" portion of our vows. How thankful I am for him, though, and I admit some of his sticks have been better than the nurses.

I'll probably update again after Friday's visit to Barnes, once I know more about when I will be admitted, etc. I've been told to expect a 3-4 week stay in the hospital and then I may be in hospital housing for a while afterwards. They like to keep you close for 100 days, due to the high rate of GVHD.

Thank you, once again, for your prayers for us. Blessings to you all, Amy

21 comments:

Barb said...

This is GOOD news, Amy. How blessed you are that your brother can and will be your donor. I know it's going to be a rough time for both of you but thank goodness we live in an age where medical miracles like this are even possible.

And remember that God blessed you with a child even your doctors have said they're surprised you were able to have. When you feel sad about the infertility side affect, look into your baby's beautiful eyes.

You're always in my prayers.

Anonymous said...

Hi Amy,
Just logged on to see if you posted any new information on your trip to Barnes. Glad to hear you're home for awhile so you can be with Brandon and Gary.

We're very proud of Daniel for agreeing to help you through this next and hopefully final and successful phase of your needed treatment. We know that there will be more to go through in the future, but hopefully no more long term hospitalizations. We also know that the next phase is going to be somewhat rough for you, but we trust that God will bring you through. We are praying for you and Daniel now and are confident that God will be working with and through the doctors and nurses at Barnes for both you and Daniel.

Your faith astounds us and I often wonder if I could exhibit the same level of trust and faith if I were in a similar situation. Certainly, I would look to your example. You are the "Job" of our family. May He reward and sustain you through the transplant as clearly you are His witness to His love and grace. Blessing for a good week at home and may you find restful nights, peace-filled days, and comfort as you prepare for the next part of your treatment. Try to eat well this week. Wish we could be nearer to help you, Brandon, and your Mom and Dad with meals. I'll call your Mom before the week is out. May the peace of Christ be with you.
Uncle Cliff

Anonymous said...

Dear Amy and Brandon,

Thanks for the update here from you, and from your family today. May the Lord continue to give you all strength, comfort, and peace as you look ahead to this proceedure.

You all continue to be on our hearts and in prayer.

Hope you can gain weight and strength this week. We would gladly give you some of our extra pounds if lyposuction transfers were possible.

Love to You,
Don and Lilan

gracie said...

Amy... I just want to thank you for sharing your heart and the pain and joy of your journey. Your faith is an inspiration to me. The evidence of grace in your life - enough for a day at a time - is amazing. Praying that more and more will be poured out for you and your precious family in the days ahead.

gracie

Joe.Karen said...

i'm so glad that you are home for now. you are a very strong and courageous woman, and we'll continue to pray for you as you go into transplant. i can't tell you how much of an encouragement you have been to me and my husband. God bless you and your family.
love,
karen and joe

Carrie said...

Amy, thank you for being so transparent. It motivates us to pray! Praise the Lord for upholding your faith, and may it never fail. I love you in the Lord.

Anonymous said...

I love you Amy! I think and pray for you all the time.
Love,
Lizzie :b

Kevin P. Larson said...

Amy,

We prayed for you in our service today. I'm passing all your blog updates along to our members. We'll continue to pray. Please let us know how we can help.

Kevin

Anonymous said...

Amy,

Just dropping by to just say "hi", and to affirm that Brandon,your family,and you continue in my daily prayers. I am so glad you were able to return home for a brief renewal. I realize your near journey will be quite taxing with the unknown;but know you are deeply loved, and Christ will carry you during those darkened moments. May the peace of Christ be with you now and forever.

Love in Christ,

Lynn Hensel

Andrea said...

Amy,
So glad that you are able to go home. And SO glad that you have a match. What a blessing! I'm still praying for you and your family. I'll keep checking for updates on the transplant. God bless!

Anonymous said...

I love you, precious friend. It was such a blessing to talk to you this weekend. These are the days you will look back on and see One Set of footprints.

~Catherine

Rachel Davis said...

As always, Amy, I'm overwhelmed and humbled by the grace you exhibit. The Holy Spirit truly oozes out of your very pores. (or maybe out of your Hickman. hehe)

Love you, and proud of Dan.
Rachel

Faith said...

Amy,
Thank you so much for your transparancy and allowing us to be informed of God's work in your life. As Matt and I prepare for marriage, your blog has been a well-spring of reality for me. I do not wish to get so caught up in wedding details that I loose sight of the seriousness of the committment we are about to make. I applaud you and Brandon for demonstrating daily what "in sickness and in health" truly looks like. I aspire to build a marriage such as yours. Praying diligently for you. I hope you have a restful and rejuvenating time with Brandon and Gary.

Love,
Faith B.

Anonymous said...

Dear Amy,
What a blessing to have known you all your life and to see how God is using you to not only go through your own difficult journey but also to inspire others to trust in the Lord in their own lives. Someone recently sent me three Scriptures that have been a real help and blessing in my own life. I pray they will help you continue to grow in your faith even in the midst of painful circumstances.

2. Cor. 12:9
My grace is sufficient for you because My power is made perfect in your weakness.

Proverbs 3:5-6
Trust in the Lord with all your heart and do not lean on your own understanding. In all your ways acknowledge Him, and He will direct your paths.

Romans 8:18
The sufferings of this present time are not worthy to be compared to the glory that is to be revealed to us.

Enjoy your time at home with your family, and rest assured that I am praying for you daily.

Love & Prayers,
Jackie Dennison

Abby Ymker said...

Hi Amy!
It's wonderful news to know that your home for a little while!
I'm so glad you get a break from the hospital.
Praying for you!
Love, Abby

Leigh said...

Amy,

My husband and I are praying for you. I tell so many people I know about you and how God is working in you and through you. Continue to claim Victory in Jesus. You are changing lives.

God Bless you!
Love,
Leigh and Dallas Taylor
Sherman Oaks, CA

Anonymous said...

Dearest Amy,
I'm praying right now for you, sweet girl. God's right there beside you...

Blessings,
micala (from HSA)

Anonymous said...

Amy, we are praying for some relief for you while you are in the hospital in St. Louis. I have received calls this weekend from those who are also praying for you. I have told them about you being admitted into the hospital Friday, and they are praying ever so strong. We don't let down for a second, dear. We hold Brandon, Gary, and all those around you dear to our hearts, and ask God to make your path easier. Stay strong in your positive thoughts! This is very important. We will give Him thanks as he makes you perfect, whole, and complete! Love, Meam & Papa.

Anonymous said...

Love ya Amy!
Lizzie

Grafted Branch said...

God bless Daniel. God bless you. And your husband. And your resilient little boy (who will be fine, come what may).

God bless your parents and your doctors and everyone who prompts me and others to stop by here and be reminded that one of our Sisters is in trouble...and I am lifting you in prayer.

Janice (5 Minutes for Mom) said...

You are such an inspiration. May God heal you and bless you so very richly here on earth as well as in Heaven.

Praying for you all...