Sunday, October 29, 2006

Brandon's View of Amy's Journey

Up until now I haven’t written much, but I wanted to take this opportunity to share of Amy’s Journey through my eyes. (This is somewhat rough and scattered, but hopefully still readable and understandable.) My wife is a lot tougher than I ever imagined. Each and every day since she was diagnosed, and even before the diagnosis, at home, she has dealt with the side effects of her disease before we even knew about it. This last year has not been easy for her, for us.

As Amy has written before, she had a physically demanding birth experience with Gary that showed me how strong she was. With the help and care of a great midwife Amy made it through and we were blessed with the sweetest and most beautiful little boy. A little boy that is growing up very quickly. We are nearing his 1st birthday and he has grown so much from that little guy who relied on us for everything. He has become so much more independent, walking everywhere, hiding and stockpiling food for his later consumption (animal crackers in the trunk of a push-along/ride-along car he has), to pointing at things and asking “Buh-Dis?” (What’s This?). He also loves to read and can often be found sitting next to our bookshelf with a pile of his books next to him going through each of them page by page. We are looking forward to his birthday and making a big deal out of it for him. We’re going to celebrate it a couple of weeks early since Amy will be in the hospital at Barnes for his real birthday.

We are actually at Barnes as I type this. Not sure how long we will be here. We came up Friday for a regularly scheduled appointment and she had been running a fever since Thursday night, so the doctor admitted her to be on the safe side. We were not prepared at all. We didn’t have enough food or diapers for Gary for an overnight trip, and neither one of us had extra clothes or even toothbrushes along… I did bring the laptop though to test out their wireless service, so that worked out nicely. In some ways, it has been nice to get a trial run of sorts here at Barnes so we know what to expect when she is admitted on the 7th for her transplant.

Overall, things are progressing as has been par for the course for Amy. The results of her last biopsy came back and she is still leukemic – 38% leukemic, which means she is worse off now than when they started this last round of triple chemo back in September. This means that all that horrible five-week stay did for her disease was maybe slow down its progress a tad. This also is more evidence that she has a very aggressive form of leukemia. She’s had some very powerful chemo drugs (four different chemo drugs, one given twice in two different dosages) that would normally do the trick, but have barely done anything other than slow her disease down, and with the help of transfusion, kept her alive to this point.

The statistics are overwhelmingly against Amy at this point and the transplant is a necessity. Though in some ways its kind of like she’ll die without a transplant, so we might as well try one because if she was in remission the odds are bad enough to make you really consider whether a transplant is worth it -- and having AML and not being in remission a transplant isn’t nearly as effective as if she were in remission.

Like all of you, I’ve been constantly amazed by Amy’s strength and faith as she has battled through each of these challenges her disease brings forward, and the side effects of all of these terrible chemo drugs and antibiotics. I know I wouldn’t have made it through some of the hardships she has and my heart aches knowing that she still has more to go through.

Unlike all of you, I get to see Amy everyday and see all of the little things, and the emotions that never make it to the blog. Not that Amy hasn’t been honest in her blog, she has, but she doesn’t usually type anything up on her bad days and when she does type its when she’s feeling better and looking back on those days now that she has survived the rough patch, and not through the eyes of one going through the rough patch. Though, we get to see some of that through her overall war with her leukemia, its the small battles that only I get to see her fight, and then she shares the results with everyone.

This battle has been difficult in so many ways for all of us. There is the physical side for Amy – she’s lost her hair and so much weight; she’s constantly battling fatigue; the nausea, headaches and weird side effects from the drugs and disease (Red Man’s, Hives, Sweets, etc); the pain from the biopsies and surgeries. We both have the emotional side of the very high chance that she will die from this disease, the chance of which increased after each round of chemo that didn’t knock her into remission. The transplant is her last chance – without it she will surely die, with it she may very well still die (from either her disease or the side effects of the transplant), best case, she only has to deal with the physical side effects such as dry eyes, permanent diarrhea, or even face a liver transplant.

We’ve both had to deal with the emotions of knowing that if she makes it through this that Gary will be our only child (yes, we both know that God can perform miracles and allows us to still have children, but we can’t count on miracles, we can pray for them, but we can’t expect them), and she will likely be reliant on drugs to get through each day.

Amy is not afraid of dying – there is hope in death. She’s afraid of leaving Gary & I alone, she’s afraid of living with a low quality of life from the transplant side effects, she’s afraid that all of this will be for naught and that we would have been better served enjoying our remaining time here on earth with each other.

In the last week, her platelets have dropped back down to 12,000, her hemoglobin has dropped down to the 7’s, the only good news is that her white count is above 7,000 (but how much of that is inflated from the neupogen shots I’ve been giving her every day?). While she was here at Barnes she received a blood transfusion that brought her hemoglobin back up above 9.5, but they have yet to give her platelets (inpatient they have to be at 10,000 or below, if they were releasing her they would). To make things worse, she’s been dealing with excruciating pain for the last two days as a vomiting spell Saturday morning threw a rib out and the pain medication they’ve been giving her for it just hasn’t been cutting it, while we wait for her regular doctor to come back on the clock Monday and see what he wants to do to alleviate her pain.

I am not afraid of what’s come to come. I’m more than willing and ready to serve Amy in whatever way she needs served if this leaves her with a low quality of life and on drugs and side effects that need constant attention. I’m ready to deal with the possibility that she may leave Gary & I – as a friend reminded me this week when I called him crying – there’s hope in death, I’ll see Amy again – and will do my best to raise Gary as Amy and I have already discussed and planned. I’m also ready to welcome her back home after winning this war with open arms and no lack of joy or excitement, and the honest desire to make every day we spend together incredibly specially memorable.

I constantly pray for the latter. I love my wife. I need my wife. I miss my wife. I will always be there for her no matter what this brings. But, oh, how I pray that God will bring her home to me.

After the transplant we hope to take her to Arizona to undergo some treatments to help rebuild her immune system, as on its own she would be severely immunosuppresed for the rest of her life (many of the same risks and symptoms as an AIDS patient). These treatments have a very good chance of allowing her to have a normal life, and we hope to maybe turn the trip into a relaxing vacation at the same time while we visit family and friends (and swim in the views of the beautiful mountains and blue skies).

35 comments:

Anonymous said...

Brandon, we just read your posting on your blog. We have been here before,dear; with Doug, your dad, your mother's mother, and now Amy. You know with our love for you, we share your pain, and offer you strength through it. Amy knows how much she is loved by us all, and we offer her strength through that love. Our prayers never stop, and Amy's miracle is top priority with those prayers. I just stocked up on cards again today, so tell Amy, they are on their way! Hugs and kisses to the three of you & God bless all through this. Love, Meam & Papa.

J R Phillips said...

I don't normally check blogs on Sunday but was promted to get on and read yours to see how you all were doing. I'm so glad I did. You are in my prayers, Brandon. Words can't express all that I want to say but know I'm praying for Amy's healing and protection as well as for your heart and all you are facing as a husband and father.

Tonya in KS said...

God has so richly blessed your lives with each other. Thank you for your candid honesty. I will continue to pray for Amy's earthly healing.

God bless you,

Anonymous said...

Brandon, Thank you for sharing your heart and thoughts with us. We know it must be incredibly hard for all of you and we pray many times a day for Amy, as well as for you, Gary and the rest of the family. God is still in control. We love all of you greatly and pray that God will give you strength and bless you richly each and every day. Much love, Grandpa Ed and Grandma Linda

April said...

Brandon, since finding this blog there is not been single day that I don't think of Amy, and you and your little one, and pray for her and all of you. Many days, she will cross my mind numerous times. Last week when I was k.o.'d by the flu I actually felt guilty for even complaining about my body aches, knowing what Amy faces each and every day.

I have never in my life prayed for one who I haven't even met, the way I have for Amy. Every day. So many times a day.

I pray for you, too, knowing that your own challenges with this are unique and difficult. Years ago, when my nephew was diagnosed with cancer at the age of two, so many in my family lost faith. Said a good God could not allow cancer. They couldn't see the countless gifts and blessings that lay amidst all of the chaos of chemo and surgery and losing kidneys and weight. You know, to this day, when he blows out his candles, none of the stop to thank God that he the boy who is now a young man can blow out his candles.

I pray for Amy with the same love and passion and faith that I prayed for my nephew. I will pray for you, Brandon, for the same way I prayed for my nephew and his parents.

I wish so much that I could do something for Amy, make her smile, laugh, feel good for one day. All I have is prayer. And the faith that God is good. All the time. No matter how it may appear.

God bless....

Anonymous said...

Have followed you guys from the beginning...will continue to pray, not just for Amy but for you and Gary as well. God bless...

Anonymous said...

Brandon,

I am so sorry Amy's leukemia journey has been so depleting in all aspects of her life. Amy's Christian faith is such an inspiration in my own journey of challenges. I am so grateful that you continue to inform us when Amy is unable. If I were there I would embrace the both of you and pray for you to experience God's unending love. I love you both and Gary, your precious gift of life. My flesh has nothing to offer, but my spirit is praying continuous for your prayer requests and for God's love to embrace each of you during this challenging stage of your life.

Love in Christ,
Lynn Hensel

Anonymous said...

Brandon and Amy,

Thank you for this prospective. We know it is very difficult but can not know the real extent of this on a daily and hourly basis. You are both a wonderful testamony to the grace and strength through faith in Christ Jesus. Our prayer continues to be for strength and comfort and healing in this time of great need.

May you be given wisdom in these matters as you prepare for the proceedures ahead.

Let us know what we can do.

Our Love to you all,
By His Grace,
Don and Lilan

Anonymous said...

Thank you for sharing, Brandon. I've been worried about Amy all week and wondered how she is doing. I'm so sorry it has been so difficult. You are all in our prayers.
With love,
Rachel E

Anonymous said...

I love you guys so much!
Love,
Lizzie

Anonymous said...

Thanks for sharing this Brandon. I have been praying for Amy all week and was glad to see an update. I will continue to pray for her healing and that soon you with both be in Arizona enjoying each other in the warm weather and blue skies.

Wendy in IA

Anonymous said...

Brandon, thanks so much for sharing with everyone your thoughts,emotions, and feelings on the blog. Joe and I in Texas are constantly praying for the protection of the Lord and His will to be done. We bind satan and his deamons and loose the Kingdom of Heaven in your family. When I read Amy,s last blog I tasted the Word and will see it's good Marilyn

Tammy Richardson said...

Brandon, your entry has brought me to tears. I dont recall how I found Amys blog but have been following her story for quite some time now. It was touching to read your thoughts, thank you for sharing them with us. As always, I am keeping your family in my prayers.

Rachel Davis said...

I delayed on responding because I wasn't quite sure what to say. I'm still not, really. I wish I could sufficiently express how much the Wilhoite family means to me--and everyone else--, but I can't.

Thanks, Brandon, for your honest post. Thanks for being there for Amy. Thanks for reminding us that we only see a small, edited version of Amy's battle.
Above all, thanks for reminding us of the hope we have in Christ.

Love to you, Amy, and Gary.
Rachel

Teresa said...

Brandon, I am so glad you posted. i woke early this morning with you and Amy heavy on my mind. I prayed for you all and for Amy's mom. I have been worried and praying all morning and just got a chance to check. I just wonder if God has been burdening people from all over at certain times. Maybe you have round the clock prayer! Thank you for sharing what God has been doing. You also have grown strong in your faith and utter dependance on God through this major crisis. You give understanding of Jesus' words, "My grace is sufficient for thee: for my strength is made perfect in weakness." I can see the power of Christ resting upon you (2 Corinth. 12:9) Love,Teresa

Brandon & Amy's family in Az said...
This comment has been removed by a blog administrator.
Monica C. said...

God bless you and your family. Brandon, you are a good man. You and Amy are blessed to have each other. I will continue to pray for your family!

Dawn said...

I am so thankful that Amy has you throughout this horrendous ordeal - you truly have taken your vows seriously. Blessings!

Carrie said...

Your wife has a gem in you, and I pray you will get to keep the gem you have in her.

Dot Marrocco said...

Dear Brandon, Amy & Family, I just want to let you know that I have been praying and will continue to pray as you journey forward through this trial. (Trial seems like such a mild word). I know that no one really understands unless they could be in your shoes. I do know that Christ suffered all things for your sake. I have heard how His hand has sustained you thus far. We are praying for success in the transplant. Love In Christ, Dot Marrocco & Family

Anonymous said...

Brandon,
My heart breaks for you! You are constantly in my prayers!

Emily Baker

~Ashley Michele~ said...

Brandon, you don't know me. I'm a friend of Joanna Burks. I just wanted you to know that I'm broken for you. I know what it's like to face losing a loved one. My mother was in the hospital in a medically-induced coma for nearly a month before she passed away early this February.

Please know that my most fervent prayers and highest hopes are with you all.
Our God is not bound by statistics, and this didn't catch Him by surprise. For years, He's been gently, lovingly preparing you and Amy for this very moment.

"Some trust in horses, and some in chariots, but we trust in the Name of the LORD our God."

With many prayers and much love in the Lord,
~Ashley Belt~

Holly said...

Brandon,

So often these past months, as I've been praying for Amy, I haven't let myself focus on what this all might be like for you. I apologize for the oversight, for you surely have needed prayers as well.

I will continue to pray that your family remains intact on earth and that the transplant will provide you and Amy with many more happy years together.

God Bless you for being so trusting and giving.

Ashley Lakey said...

Hello,
You don't know me, but I'm a friend of Joanna Burks and she's been asking us to pray for ya'll, so I thought I would visit this blog and let ya'll know I'm praying!

There is nothing I can do to help out, except pray. Prayer is a tool that Christians don't use enough. God still does answer prayers...it may not be in the way we want it, but His way is best. I can't imagine how hard it must be to go through this, but we can have hope in the Lord each day! I will keep ya'll in my prayers!! God bless,

~Ashley Lakey

Faith said...

Brandon (and Amy),
Thank you for your tranparency and openness in sharing your struggles. We're in this with you. We're here for you. I am so overtaken with the need to keep you lifted in prayer. Not a day gose by that we do not petition the Lord on your behalf. May God be glorified.

Matt & Faith

Christina said...

My heart goes out to you and your family. I have been following Amy's blog since the beginning and I will continue to pray for her and for all of you. I pray Amy get's her miracle. She has been a faithful servant and an inspiration to us all. I pray God chooses to give her a longer life. One that this horrible disease cannot destroy. Please let her know we are all praying for her out here and hope everything goes well. Hang in there and know we are all sending our prayers to God to save Amy.

Kelli said...

I have to tell you something. I sit in Amy's shoes, but from different issues. I haven't understood, fully and completely understood, things from my husbands perspective until now. Thank you. Know we are praying for you all, individually and as a family.

Brenda said...

Brandon, you and Gary are in my prayers along with Amy. Thank you for sharing your heart.

Tammy said...

Thanks for being so open and honest.My prayers are with you.

Barbie said...

Thank you for your post. I can't help but cry as I read it. I watched my Mom suffer from Cancer from the time I was 7 until she died when I was 15. I know how trying these times are, but can't even imagine how hard it is to see your wife go thru all of it. I am praying for all of you. Praying for a miracle. May God Grant you peace that surpasses understanding in this time.

Dr. Dan said...

We got word here about the Bone Marrow results and are very sorry about the report. We pray that through all this the three of you, and your extended family, are able to feel God holding you in the palm of His hand and pray for all of you to have in the midst of such a turbulent time, the peace that surpasses all understanding. Numbers 6:24-26. Dan Kingsley

Sue & Jeff said...

Brandon & Amy,

We love you guys and pray for strength and healing.
God bless you.

Love,

Sue, Jeff, Hannah & Moon

Janice (5 Minutes for Mom) said...

I never know what to say when I read posts like this. My hear it so full of emotion for you all. You are such a wonderful husand to Amy. Your beautiful family deserves a long life together!!!

I will keep praying for you all...

May God bless you all so richly.

Pamela said...

Brandon, our family suffered through a medical crisis with our baby, he was given less than a 35% chance of living. God sent his angels and we prayed God's will would be done and our son is 24 now. Our prayers are with you and Amy and your wonderful family. :)

Anonymous said...

I'm praying for you guys.

Dan Taylor