Living with Leukemia

Remembering...

2009-09-10T01:08:00.000-05:00

So, I know many people are expecting me to say something today, and I can understand that. I'd be curious too if I were in your position; wondering how I'm getting on in life. I've been thinking about this day for the last couple of weeks and wondering how I would be affected and how I would remember Amy. Then, through a series of everyday events – watching movies, reading books, hanging out with Gary and my family, interacting with my sisters-in-law online and over the phone, and a couple of Bible verses that have stood out to me in recent weeks – I came to the realization that even though this day is the anniversary of Amy's death that's not how I want to remember this day. And while I miss Amy and so often wish that she were still part of my everyday life, I didn't want to make today about remembering her life either. I do that everyday in my interactions with Gary, my family and friends anyway. Amy comes up in conversation several times a day. She was a huge part of my life and always will be. What struck me though was something that has been at the forefront of my mind since Amy was first diagnosed: the frailty of life and how quickly things can change. It is with that base thought and the continued revelation of ideas over time (and the last few weeks in particular) that I decided I want to use the anniversary of Amy's death to remember, but to remember to take the time I so often forget to take and make sure that I let all those people I care about and mean something to me know how much I care and appreciate them in my life – even if I haven't had contact with them (you) for years.

So, it is with that in mind that I say thank you for what you mean to me and/or how you've influenced my life and/or how I can count on you.

An Update...

2009-06-02T23:15:00.002-05:00

So, I figured it was probably time for an update. If you haven't noticed, I'm not really the blogging type. :)

That said, Gary & I are doing well and are about to embark on the next stage of our journey as we pack up and head back home to Arizona in the next month or so... There's not much here in MO for Gary & I other than memories, and unfortunately, most of them aren't happy ones... (That's not to say we didn't have joyful times in the midst of our trials or that we haven't grown from this experience...)

I'm still working on finishing Amy's book. It was a larger project than I anticipated, and I was much closer to being finished months ago, but didn't really like how it was turning out, so I scrapped a large section and started over from almost the beginning. I don't want to put a timeframe on completion, but I do have my publishing and distribution all taken care of. I had some interesting marketing ideas I thought I'd try to work out with some of my contacts in the music and book industries, but I don't know how feasible they'll be without having to back out of the publishing and distribution goals I already have in place. Anyway, the goal of the book is to spread her story, and through it, evidence of God's faithfulness, sovereignty, and His glory and not to make money, so there will definitely be a free downloadable version available and it will be protected with a Creative Commons license instead of a standard copyright to encourage duplication and sharing.

Happy Birthday

2008-06-01T23:33:00.002-05:00

Today would have been Amy's 27th birthday. If she were still here we would be celebrating heartily, however, with her passing instead of celebrating we use this occasion to remember her. I've received a few emails and a couple of cards remembering Amy today and just wanted to say thank you to each of you who sent along a note of encouragement or a memory of Amy today. I spent the day with Amy's family, and much of it in an introspective mood, and we all shed a few tears along the way. Amy is not forgotten and she is still very much loved.

6 Months... it's really been 6 months...

2008-03-17T17:51:00.004-05:00

Well, Its now been more than six months since Amy passed away. There is still so much uncertainty about what the future holds and where Gary & I go from here. Not that we aren't perfectly confident that God already has it all figured out, we just don't know what God has in store for us yet. Life is still uniquely bizarre. You don't realize how much a part of your life someone is until they are gone.

The book is still a work in progress. Some aspects of it have been very difficult emotionally and there have been many joyful moments and many tearful moments reliving the memories. Seventeen chapters are essentially done and another dozen are close. Amy left so much to include that keeping the finished product under a thousand pages is actually a challenge.

I was blessed this weekend to discover the following song written shortly after Amy went to be with the Lord and thought I'd share with those still stopping by. (Note that the title is a link to the audio.)

Where You Are

I knew you just in passing, which means I knew your name
And anything you cared to write for strangers on the way
We often prayed for you as you were going through
The battle for your life that ended today.

So many now are grieving and yet there is a joy
To know that you are comforted and safely home tonight
Though the pain that we all carry is a burden of these days
We give it to the Lord and find its meaning in His ways

Chorus: For where you are, there are no more tears
No more dying, no more fear
Sickness healed and pain has gone away
And you have seen the Healer welcome you today

Caught between desires: the life He gave to you
The ones you love and who love you and dreams that could come true
And worshipping Lord Jesus in Heaven evermore
It put you in the middle of a holy tug-o-war

We dug in and we pulled hard to try and keep you here
Heaven would still be there if you had stayed around for years
But time is God’s creation, He’s the one that moves the hands
And if He says your time is now well then I guess I understand.

Chorus 2: But where you are, there is no more time,
No more pressure, no deadlines
Where you are, we’ll see you once again
And the clock will not be running, we’ll have eternity to spend

In life there are anomalies, things that should not be
We struggle to explain them, find some rationality
Pieces of the puzzle that will someday find their place
And that’s the dance we do as we continue on this race

The reality you showed us is a legacy you give
To never waste a moment, to learn to really live
We all should stop and ponder and just appreciate
And never take for granted the next breath that we take

Chorus 3: Where you are is where we hope to be
When our time is over, when we will get to see
Our Creator and those who’ve gone before
We will walk the streets of Heaven and live there evermore.

Sickness healed and pain has gone away
And you have seen the Healer welcome you today

w/m copyright 2007 James A. Karpowitz, all rights reserved, used by permission.

An update of sorts...

2007-11-02T22:46:00.000-05:00

Two months have now passed since Amy passed away, and almost one year since her transplant. I can't say that as time's passed things have gotten any easier. I miss her more and more each day. In fact, some of these last couple of weeks have been amongst the hardest as things are finally settling down and the reality of her passing is settling in. I lost my best friend, my beloved, and nothing can, nor do I want anything to, replace, her. Gary continually asks about her or to see her, and still expects certain tasks and roles to filled by her and sometimes seems confused or upset when its not Amy. He loves looking at her pictures and had me play a full years worth of home videos of her for him the other day. I enjoy working on her book, reading her writings almost makes it seem as though she is still right here -- I can hear her voice as I read her words. Speaking of the book, I'm making decent progress. I've finished about 8 chapters (of a tentative 30 or so), and have a couple of strong leads on a publisher. That being said, this is still a lengthy process and I expect it to take close to a year yet before it is finished.

To answer the recent question, I'm sure we would have done it all over again much the same. There may have been a few differences here and there, but overall, I'm sure we would have proceeded just the same. Every moment we got to spend together was special. We had some of our best conversations in those last few days and had some great memories in those last few weeks that I wouldn't trade for anything. Amy knew more than anyone the pain and suffering she was enduring, and also more than anyone, she knew what kind of hell a second transplant would be. Yet, she longed for and looked forward to it as she knew it provided hope. Hope that she might be cured, but also hope that she may be able to survive just long enough that another treatment that might cure her would come available. Hope that she might be more than just someone in the photos for Gary to look at, but someone who actually filled his memories.

And, like Betony asked a few weeks ago, I figured a couple of pictures of Amy before her diagnosis and treatment would be a good idea, as well as a picture of the mirror I had made from our bathroom mirror where she wrote a message to me before she went into the hospital the last time, so enjoy!

One Month Later...

2007-10-10T18:35:00.000-05:00

So, it has now been a month since my darling Amy passed away. In some ways things have gotten easier, in other ways they've gotten harder. Though I will never stop loving Amy, nor missing her, or forget her, as time goes on I know that life will again return to a semblance of normalcy without having everything reminding me of Amy. This last month has been a challenge for me and I still have many challenges ahead.

This weekend I have two emotional hurdles. Each of the hospitals that cared for Amy are hosting events either celebrating or remembering their patients. I will be at both events, as will Amy's mom. They will be good for me, but at the same time they won't be easy.

As Amy mentioned several times, God gives Grace for each day and His mercies are new each morning. You never realize how true that is until you're faced with trials and are aware of your need for God's grace and mercy.

I started working on the book a couple of weekends ago. At first it was incredibly overwhelming and I feared that I might not actually be able to finish. However, as time was spent working on it a game plan was developed and it is now much less overwhelming, and semingly doable. I still don't expect it to be an easy task by any means, but I think I can do it. It may tae me some time to finish, but I think I can get at least my part done within a year at the latest.

I also just wanted to let those who are still battling know that they are still being prayed for.

And I wanted to take a second to thank everyone who has sent Gary & I cards. We've received so many wonderful cards from people we know and love, as well as from many strangers. I have been blessed so greatly by all of them. Thank you.

Did Someone Mention A Book?

2007-09-20T11:40:00.000-05:00

As some of you may have noticed, there have been numerous comments posted over the last several months to the effect of publishing Amy's blog in book form. We've also received several emails and personal offers to help us do just that. Well, the intent of this post is to inform you that a book was in the works by Amy, and is now one of my top priorities.

She initially started to compile her blog postings with added commentary and details, but after ninety-some pages decided she wanted to do something a little different. So, she started from scratch, from the beginning, all over again... and got a good portion written up. It is my goal to finish what she started, as well as to include this blog, and her other, private, blog into one work. This is a massive undertaking in some respects and I don't have a time frame. However, I am striving to finish within a year and will continue to post progress updates and other information on this blog.

And Katie, if you're still reading this... I don't know what suffering, struggles, or trials you have in your life right now that would have you try to take your own life; and I won't pretend to have all the answers for you. But, I wanted to let you know you are being prayed for, and that if you ever wanted me to try to explain where Amy's strength and faith came from you can feel free to write me at the email address posted in the sidebar.

Memorial Service

2007-09-12T09:30:00.002-05:00

A memorial service will be held for Amy this coming Sunday. The details are as follows:

Sunday, September 16th 2007 beginning at 4:00 PM at Maramec Spring Park -- Furnace Shelter (maps to follow).

We will have someone at the park's entrance from 3:00 PM to 3:50 PM to allow for free entry into the park. Otherwise there is a $3.00 per vehicle entry fee so you may want to carpool, if possible, to minimize the expense.

There are a large number of tables and benches at the Furnace shelter, however, there may not be enough for everyone, so you may want to bring a lawn chair to assure yourself of a place to sit (should you want to) or for a more comfortable seat.

As far as attire goes, please feel free to wear whatever you are comfortable wearing and don't feel obligated to wear your Sunday best. I already know there will be some attending in their best suits, and others in shorts and a nice T-shirt.

In honor of Amy, a memorial trust fund has been set up for Gary. In lieu of flowers, a donation to this trust fund would be most appreciated.

Donations can be sent directly to:

COMMUNITY BANK OF DIXON
P. O. BOX 370
DIXON, MO 65459

TELEPHONE NUMBER 573-759-3399 FAX NUMBER 573-759-3398

The checks can be made out to Gary L. Wilhoite II or Amy Wilhoite Memorial Fund with Donation written on the Memo line of the check.

Again, thank you for your prayers and your support -- she was always so encouraged by your prayers.

The two yellow circles are where you can park your vehicle and the big red X is where we will be. This map (without my additions) is also available at the park entrance.

Ultimate Healing

2007-09-10T17:44:00.000-05:00

Once again, I'm not sure the best way to say this, so out it comes.

My dear beloved Amy has gone home to meet her Lord. Shortly after 4:00 PM on this, September 10th, 2007, she took her last sweet breath. Moments before, she leaned up to me, and with much effort, told me she loved me - and gave me a kiss through her oxygen mask.

As someone else said on another blog when their dear one passed away, I never knew one could be at so much peace and have such a broken heart at the same time.

Thank you once again for all of your prayer.

And know that for all of you we've come to know that are still fighting your own battes that we're still praying for you.

Once Again, Please Pray

2007-09-10T11:05:00.000-05:00

I don't know where to begin, so I'll just be blunt. Amy is need of much prayer. The fungal infection in her lungs is taking its toll. She is having a very difficult time breathing, on top of which she is also now dealing with mucositis from the methotrexate dose on Friday and the same pain issues she's had these last couple of weeks.

At this point the transplant is being put on hold. There is a lot of doubt as to whether she will survive this infection. One of the doctors yeterday said we could be looking at a couple of hours, or a couple of days. She's not talking much anymore as all of her energy is going into just trying to breathe (and for those that were wondering, she is hooked up to a rebreather with the oxygen level turned all the way up).

So we ask for prayer. Prayer that the Lord might bring her once again back from death's doorstep. Prayer that should God deem this the time to bring her ultimate healing and call her home that she will pass quickly and peacefully. Prayer that as the doctors keep asking me what to do that I'll have the wisdom to make the right decisions. Prayer for the doctors as they come up with ideas to care for dear Amy.

Thank you all for your faithfullness in praying for Amy.

Moving Forward -- A Quick Update

2007-09-07T14:23:00.000-05:00

As has already been touched on in the last couple of posts, this last week has been hard on Amy. She's still in a significant amount of pain from her marrow working hard to produce cells, as well as from her fungal infection -- which the doctors believe may be both inside and outside her lungs. The fungal infection is presenting as a type of pneumonia and is making it difficult for her to breathe and is painful. She's also had to be on oxygen these last few days to help with her oxygen levels in the blood and the aforementioned breathing.

Earlier this week she had a few days when she was very confused about where she was. The doctors have changed around her medicine a little bit to help combat that and she is, thankfully, back to her normal self once again -- aware of her surroundings and what is going on. As a precaution they did an MRI on her head (which was clear) and decided to go ahead with the spinal tap to rule out neurological involvement of her disease. They did the spinal tap this morning after giving her both platelet and plasma transfusions, as well as some vitamin K to help with blood clotting. As a further precaution they went ahead and gave her a dose of chemo (methotrexate) into her spinal fluids while they were tapped in so as to not have to do another spinal tap on her in the future. We should have some preliminary results from the spinal tap tomorrow with final results by Monday.

Though we don't have an exact time frame yet, we are moving full steam ahead into the second transplant. The doctor met with Amy & I yesterday to let us know that they were committed to the transplant as long as we were committed to it. Aside from the risks already present with the transplant, her infection increases her risks severely. So we ask that you would pray that the antibiotics she's getting for it will help to contain it before we get to that point. She is currently getting caspofungin, meropenum, vancomycin, and amphotericin B -- a drug she had last year that she did not do well with, though she has not had any of the serious side effects this time that she had last time around (praise the Lord).

Amy & I are always grateful and appreciative of your thoughts and prayers, and of your comments. Thank you all for caring so much for our hardships and well-being. We continue to hold out hope that Amy will be healed and beat this disease, but know that whichever way this ends up that God has gone before us.

We're also thinking of and praying for those of our friends dealing with their own battles with cancer or other serious ailments.

Wednesday Prayer Request

2007-09-05T11:25:00.001-05:00

Yesterday Amy was taken downstairs for an MRI of her head and the results came back normal. The doctor let us know shortly after the procedure was done. We are very thankful for those results. Dr. Westervelt has suggested that a lumbar puncture would be done soon to check Amy's spinal fluid. He wants to rule out that there is any leukemia present there. She has requested prayer for this procedure. We don't have a time schedule for that yet but they tell us it will be tomorrow. Amy is still experiencing pain and some confusion. These seem to be the rough days for her. Her counts are slowly inching their way back up but there are still no neutrophils. The doctor has changed her anti-fungal medication today. She will receive platelets before the procedure tomorrow. Her sister Lizzie is here today for the pre-donor testing. So far, so good. We have not been given a transplant timeline yet. Thank you for remembering her in prayer as she faces the test tomorrow.
Sincerely, Anita -- for Amy

Tuesday Morning Update and Prayer Requests

2007-09-04T08:22:00.000-05:00

This is Anita, Amy's mom, posting for her this morning. Brandon was able to spend a long weekend with her but had to return home last evening so he could get to work today. One of Amy's latest chest x-rays showed that the fungal pneumonia is still persisting and has caused her to feel pretty poorly. The doctors have begun several new medications to try to fight the infection. In the meantime, Amy is experiencing a lot of pain, difficulty sleeping, and numerous side effects from these drugs. She is struggling with confusion. Another chest x-ray was taken early this morning and we still wait for the doctor to make rounds to learn the result. She is also having swelling due to fluid retention. Drugs will most likely be administered for that problem today. Overall, Amy just feels pretty lousy and I know if she were the one writing she would ask you to pray for her -- for freedom from this pain, for rest, and for progress toward the second transplant. Her sister Elizabeth, Lizzie, will be here at Barnes tomorrow to begin her pre-donor testing. As always we thank you as her family for faithfully remembering her in prayer. We continue to trust her health to the Lord, her Creator and Great Physician. I will let you know more as the day progresses. Hopefully she will feel better by this evening and can have a good night of rest. We are also remembering our other friends who suffer with various forms of cancer and pain -- Joe, Brian, Robin, Sandy, Paige, Heather, Joel, Donna, Colleen, Marie. Please know that you are in our thoughts and prayers.
Sincerely, Anita for Amy

Timeline

2007-08-31T17:22:00.000-05:00

We just got a call from the doctor a few minutes ago. We have insurance approval! That's a huge praise, once again.

It looks like Lizzie will be up on Wednesday for all of the necessary testing and we will proceed from there. At some pont I'll start chemo again to hopefully knock out any residual blasts.

They continue to make changes to my antibiotics as I spike random fevers. The pain level has held pretty consistent.

Thanks for your prayers!

The Results

2007-08-30T11:23:00.000-05:00

"The work which His goodness began, the arm of His strength will complete;
His promise is Yea and Amen, and never was forfeited yet.
Things future, nor things that are now, nor all things below or above,
Can make Him His purpose forgo, or sever my soul from His love."
- A Debtor to Mercy Alone
Augustus Toplady

My biopsy resuilts came back clear today, allowing us to proceed with a second transplant! We are so greatful to God for what is nothing less than a miracle. The next step is insurance approval, and then they will begin testing Elizabeth (Lizzie) to make sure she can be my donor. (They do heart tests, chest x-ray, and lots of bloodwork.) She will also need to begin a four day round of Neupogen shots to stimulate her marrow to kick stem cells into the bood, where they can be obtained peripherally. I will remain in the hospital for now as my counts are still pretty much at zero. At sound point I will begin an 8 day regimen of chemo prior to the stem cell infusion.

In the meantime I'm still continuing with fevers off and on, and I feel like I have the flu as my marrow works double-time to produce new cells. Everything hurts and I have a Dilautid pain pump to use which helps, but usually just takes the edge off of things and leaves me in a state of semi-sleep all the time. I haven't had to deal wih daily pain like this at all throughout my illness, though I know other AML patients struggle with it, and I am finding it to be a new challenge.

Thanks, as always, for your prayers!

Biopsy #11

2007-08-27T19:05:00.000-05:00

We did the biopsy around 2:30 p.m. today. Emotionally it was one my most difficult ones ( Brandon had to work, but my mom was here), but realistically it went quite well and the doctor did a good job. Results probably won't be in until Wednesday afternoon so I won't know much today. Keep praying that the blasts will be low enough to allow me to qualify. If I qualify, the next step is insurance approval and then they will begin testing on Lizzie. She will also need a series of neupogen shots to stimulate her bone marrow so it can be gathered peripherally. I'm not sure yet how things will work on my end. They mentioned doing some of the tests inpatient -- which I had while I was in last time, as they like everything to be within 30 days of transplant.

We're still making adjustments with my meds. Something yesterday had me breaking out in a rash and I may be on steriods for awhile depending on what drugs they decide to use. I got blood two nights ago and platelets yesterday afternoon. My petechia is really noticeable.

Thanks to those who have sent cards and care packages. You know who you are, and you really brought a lot of happiness to what is an otherwise boring day. I dreamed this morning that I was at home cleaning the bathrooms and having a wonderful time. Guess I'm just that homesick.

Love - Amy

Enterococcus

2007-08-25T22:21:00.000-05:00

My cultures tested positive for the bacteria listed above. As a result they've stopped my Vancomycin infusion and started with Daptomycin. I don't know a whole lot, except that any bacteria is dangerous when counts are low as you have the possibility of becoming septic. Please pray that the bacteria will respond quickly to the new drug and we can kick these fevers!

Fevers

2007-08-25T16:31:00.000-05:00

I started running a fever during the night last night so we did blood cultures and took another chest x-ray. As a result they've added a couple antibiotics to my drug course and switched my anti-fungal drug. Chest x-ray still looked about the same as last time...not much better, not really any worse.

Please pray that we will be able to keep the fevers under control and for my biopsy on Monday. I'm not sure what time it will be -- I was just told sometime in the afternoon. This is a big one...it will be hard to wait for the results to come in. I keep praying that I will be allowed to go on to transplant, that all of this has not been in vain.

Thank you so much for your prayers.

Amy

Done with chemo!

2007-08-19T21:37:00.000-05:00

I finished this round of chemo earlier today. Counts are as follows:

WBC - 0.2
HGB - 10.8
HCT - 31.3
PLT - 12

As you can see, the white count is down, and hopefully will stay down through my 14 day marrow. Please pray for health this week as this is the time when fevers hit, etc.

Blessings,
Amy

General update

2007-08-18T20:36:00.000-05:00

I finished the Ara-C this afternoon and will finish the clofarabine in the morning. So far side effects have been mild, for which I am thankful. The headaches have also let up, so Monday's spinal tap has been put on hold for now. The only test on the horizon at the moment is the 14 day biopsy, which I'm expecting a week from Monday. My biggest complaint has been a sore back. I think it is just a process of adjusting from my firm mattress at home to the foam ones here at the hospital.

Thank you as always for your prayers.

Amy

Back at Siteman

2007-08-15T20:52:00.000-05:00

I almost wrote this morning, because I was having a really hard time accepting being back here again -- so soon. I want above all else to be real, and today has been a wide mixture of emotions and battling things out in my head. I don't want to be here -- yet I'm exactly where God wanted me to be today. I spent quite a while crying and feeling sorry for myself, and then asked for Ativan and listened to some Sovereign Grace worship music. (Thanks Janice!) Went a long way towards boosting the spirits and the rest of the day has gone pretty well. My mom is with me again -- she has been so faithful to stay with me every week during my treatments. I greatly appreciate her sacrifice and that of my family as well as they function without her at home so much of the time.

I had an MRI this evening. I've been having headaches, and though I think this one was due to a really poor night of sleep and crying most of the morning, they are being careful due to the possibility of neurological involvement with the disease. I've been warned that if the headaches continue a spinal tap is going to be scheduled and if they find leukemia it will mean administering chemo into the spinal fluid. If that doesn't make you shudder, it should, and I'm not sure what I'll do if we reach that point. For now I am just praying that the headaches will cease (as I mentioned, today was much different than than what felt like someone was drilling into my skull for several days last week.)

I'm back on the 6th floor, which is nice because I know most of the nurses, and in some ways it is like coming back to old friends. I may be moved to the 5th floor eventually if I qualify for transplant. I don't have that super long address posted yet, but for those of you who may have done better than me and actually copied it down somewhere, everything is the same except the room number is 6907. Just one room over from last time, so the view is about the same as well. I'll try to get the address from the nurse and have it posted by tomorrow sometime.

They started chemo last night. I have five days of two hour infusions for both the clofarabin and citarabine. Side effects haven't really hit yet. My appetite hasn't really rebounded from the last round and I'm down about five pounds, so I'm hoping to at least maintain my weight with this round. Clofarabine has about an 80% vomiting side effect rate, and being the "easy puker" I'm kind of expecting things to get a little rough.

For those in the Columbia, MO, area, the internet provider Socket is hosting a blood drive from 10:00 a.m. to 3:00 p.m. Friday, August 17 at their headquarters at 2703 Clark Lane (in Columbia). Just FYI. :)

Thanks for your prayers and encouragement.

Amy

Round Six...or seven...I've lost track

2007-08-10T22:02:00.000-05:00

I got my biopsy results on Wednesday but waited until my appointment today to update, since I had no clue what the plan would be. The biopsy showed a return of the leukemia with 65% blasts in the marrow. Our prayer going in to today was that somehow God would "turn the heart of the king" and allow my doctor to be open to second transplant, since that is the only possible "cure" for me. He told me last week he would also contact MD Anderson in Houston to see if they had any clinical trials open to me. He presented that as an option today, but I really don't want to leave home and phase one trials are beyond a long shot, so we turned to the only other option, which is to do another round of chemo (previously mentioned clofarabine). I asked him if it would be possible to go in while I'm still hypocellular (i.e. white count and blasts down to zero) and do a transplant and he said yes. I was shocked, to be honest, and incredibly grateful that he is giving me a chance. At this point I'm pretty much labeled drug resistant, so there is no guarantee that blasts will be low enough at 14-day biopsy to qualify me for transplant, but it is a chance, and the last one I have, so we are taking it. I will be admitted on Tuesday at Barnes and begin clofarabine and high-dose Ara-C. It's a rough drug, and I still have pneumonia, so I am honestly scared going in. I don't know how many times I can survive treatment, and going into this sick and with the liver risks again is rough. I'm not entirely sure yet who my donor will be as we have an offer from Sloan-Kettering to do a higher level of matching with my siblings, but at this time it looks like my sister Lizzie will be my donor. She's 13, ready and willing, and I can't express how thankful I am for another chance at this.

I thought a lot today about each of my doctors and just felt so blessed to be surrounded by such a team. They have allowed me to fight this far, and aren't giving up on me. I don't know how to express my gratitude for their daily work. I think also every day of people like Dr. Thirman at U of Chicago who daily searches for a cure for my specific leukemia (MLL-ELL). I wonder each day if today is the day he'll find the cure, and quietly thank God for the dedication of people like him who are searching to beat this horrible disease.

I'll update again once I'm in the hospital. Thank you as always for your prayers.

Amy

Friday

2007-08-04T10:28:00.000-05:00

God's mercies are new every morning because each day has enough mercy in it only for that day. This is why we tend to despair when we think that we may have to bear tomorrow's load on today's resources. God wants us to know that we won't. Today's mercies are for today's troubles. Tomorrow's mercies are for tomorrow's troubles.--John Piper (A Godward Life, pg. 26) (I found this quote on Google, so I'm not perfectly certain of the authenticity of the source -- said what I wanted to say, though.)

Yesterday morning found me in the radiation department in tears because I just could not face all that the day held. But His mercies held through, and we got through the day. Special mercies like the nurse who took time to alcohol the ink pen I needed to use, or the tech who noticed me shivering in the hallway outside of the general waiting area because of my neutropenic state and offered a few blankets. I have come to love warm blankets. By the time I got to the biopsy room I was quite content to cuddle up under a few of them and await the inevitable. I think yesterday's biopsy was one of my easiest -- and for that I am incredibly thankful. (I am quite sore today, though.) The doctor was also able to see me earlier than planned, so I didn't have hours to wait in discomfort.

I still have infiltrates in my lungs. Some areas were better and some were worse. Apparently fungal pneumonia can be asymptomatic, so having clear sounding lungs doesn't necessarily mean anything. I'll continue on the IV infusions twice a day of Vorconazole and hopefully things will clear up. I got my familiar biopsy tech yesterday who does nothing but biopsies all day long and is quite good at them and also good to assist me in breathing. Deep breath in and let it out during aspiration -- somehow it helps. This time it actually came out as more of a breath and less of a scream, and he was able to get the necessary marrow in one pull. For those in the know, you know that's really cool. :-) By the time I saw my doctor my drugs had kicked in pretty heavy, so I am not the best source of information regarding the appointment. He's not closing the door on me yet, though he will not yet agree to second transplant. We need to see what the biopsy looks like (results next week) and go from there. He mentioned doing another round of chemo -- chlofarabine, which is a drug I haven't seen yet. He still wants me in significant remission before agreeing to transplant. The problem at the moment is that sending my counts down to zero again with active pneumonia is risky, so I guess my major prayer request right now is that it would just clear up. I have an appointment again on Friday to see him and get a chest x-ray to see where things stand with the pneumonia.

Also, please pray that my platelets will start to hold. It has been exhausting keeping up with them this past week. The last round of chemo just hit really hard, and it takes a while. I'm needing almost daily transfusions to keep them up, and the numbers are still dipping dangerously low.

Living

2007-08-02T10:32:00.000-05:00

Still here...battling to keep up with my platelets, which have not been holding at all. They were at 1 on Monday and 2 on Wednesday, so I went in again today for more and will probably have another unit before biopsy tomorrow. If you live in the Columbia, MO, area and are an A+/- platelet donor -- thank you. You've kept me alive this week. I realize the sacrifice of each unit. Donation takes at least two hours and some large needles, but it is truly saving a life. If you can donate blood, platelets or other product, and you aren't doing so, please consider it. There is also the constant need for stem cell donors, and it's a rather simple process to be placed on the national registry (www.marrow.org) and if you are of ethnic origin you are especially needed.

So there's my plea for the day. My lungs have been sounding clear at my visits to Ellis for labs this week, so I am hopeful that the CT scan will be clear tomorrow. It is a very full day and I am still very much lacking energy, so I would appreciate your prayers for strength.

Blessings,
Amy

Home

2007-07-29T13:53:00.000-05:00

I was able to come home on Thursday, which was also our 4th wedding anniversary. I kind of used that to sway the doctors. It has been hard adjusting back, as usual. I have a hard time going from the constant monitoring to nothing, and the pneumonia has me feeling very ill. I am tired, weary, broken, and so weary of this long, slow death. I know God has a purpose in all of this -- I know He is still sovereign -- I know He still holds my days, but the fight is leaving me, and I find myself longing for relief from this daily assault on my body.

Please pray that I will continue to gain strength and recover from the pneumonia. I have an appointment on Friday at Barnes for a CT Scan, bone marrow biopsy #10, and a visit with my transplant doctor. My parents are taking me as Brandon has work obligations. This is the first time I will go through a biopsy without him, and I am scared.

I hold to the verses I have posted on my site. Struck down, but not destroyed...even though some days I feel completely at the end of my self. This long, long trial is wearing us down. Please cover us with your prayers.

In love,
Amy

Going home soon

2007-07-25T14:33:00.000-05:00

Just wanted to let everyone know I should be going home this week, so you may want to discontinue use of my posted mailing address.

I had a reaction to a blood transfusion today. Thankfully it wasn't serious, but they had to stop the transfusion so I am now waiting for more blood...I really feel like I need it. Other than that there isn't much to report. If I go home within the next few days I'll be back outpatient for a bone marrow biopsy, most likely the end of next week. I'll also be doing home IV infusions of one of the meds for the fungal pneumonia.

Thank you for your prayers.

Bronchioscopy

2007-07-22T12:40:00.000-05:00

Friday's bronchioscopy went as well as possible. They weren't able to sedate me (gave up after about 400 mg of phentenol still wasn't doing anything), and I can't say I ever want to repeat the experience, but it's over and done with. So far they have not gotten any conclusive results so they are still treating me for a fungal-based pneumonia. In the meantime it seems like my fevers have lessened, and we are just waiting on my white count to come back. It took a big jump yesterday and reached 1.5 today. I'm glad it's finally headed up (hard to explain how you feel when it is non-existent) but I don't want it to fly up too quickly, either. I will most likely have biopsy #10 this next week to see what is going on in my marrow. The doctors have mentioned doing one but haven't put a date to it. I'd love to start talking about going home, but know I have more days here still, and I don't know what the schedule will be like if we decide to go straight to transplant. I had a lung test done on Friday a part of transplant pre-requisite, so we are heading that direction.

Thanks, as always, for your prayers.

Amy

Tomorrow's Test

2007-07-18T15:00:00.000-05:00

The bronchioscopy is scheduled for Thursday around 10 a.m. Please pray that it goes well with no complications and that they are able to find the appropriate medication to sedate me since the commonly used drug, Versed, doesn't work for me. They will not be doing a lung biopsy because that is considered too high risk at this time. There is a good chance the test will be inconclusive but if it does show the problem it will aid greatly in treatment.

Blessings,
Amy

Test Update

2007-07-18T10:44:00.000-05:00

I had the CT scan done this morning. It went well, and I should hear results by this evening and know if they will also need to do the bronchioscopy (which is the same as the test that uses fluid to test for potential fungal infection in the lung.) I really hate CT scans. I'm not sure why because they are painless and rather routine at this point, but they always freak me out and laying on the table with a poster of possible dye reactions as my only reading material doesn't inspire confidence. I'm glad to have that behind me today and thankful for your prayers.

In the meanime, I spiked a fever while getting blood last night -- something they really don't like and tends to freak everyone out a good bit. I don't really think it had anything to do with the blood, but they had to stop the transfusion and haven't started back up again yet today, so my counts are really low. My mom is donating platelets today. Unfortunately they can't be donated specifically for me. Would be nice, because the shortage recently has greatly affected my ability to get them when I need them. When I plead for donors it's not just because they do a good job of indoctrinating -- it's because I am having to wait to receive something they don't have enough of, and it is a scary thing to have to wait for platelets when they are low to begin with. I don't want to die of a brain hemmorhage.

Thanks for your prayers -- I would be thrilled if the CT scan doesn't show anything, I was told sometimes the x-ray can show things that aren't really there. The idea of having a fungal infection in my lungs is really scary.

- Amy

on my mind this morning...

Looking back at the road so far
The journey's left its share of scars
Mostly from leaving the narrow and straight

Looking back it is clear to me
That a man is more than the sum of his deeds
And how You've made good of this mess I've made
Is a profound mystery

Looking back You know You had to bring me through
All that I was so afraid of
Though I questioned the sky, now I see why
Had to walk the rocks to see the mountain view
Looking back I see the lead of love

Looking back I can finally see (I'd rather have wisdom)
How failures bring humility (than be)
Brings me to my knees (a comfortable fool)
Helps me see my need for Thee
- Lead of Love, Caedmon's Call

Prayer Request

2007-07-17T19:44:00.000-05:00

This is Brandon, posting for Amy. Amy has been running fevers off and on all day long today, so they did some chest X-rays as part of normal procedure for when she runs fevers, and the X-rays showed contaminants in both lungs. From what I understand it is most likely a fungal infection of some sort that has been able to develop because of her low counts from chemo. Sometime in the next day or two she will get a CAT scan as well as have a Bronchoscopy (from what I understand it is a tube stuck down her throat into her lungs to examine the inside of the lungs) -- and they will also take a water-based biopsy from her lungs at the same time (though I must admit I don't really understand it or how it works at this point in time, especially since I wasn't there when the doctors explained it).

Anyway, all that to say, if you could pray for her these next couple days in regards to each of the two tests (CAT scan and Bronchoscopy), as well as in regards to her infection and fevers, we'd appreciate it very much.

The Wilhoites

General Update

2007-07-16T14:55:00.000-05:00

Nothing much to note, just wanted to check in with everyone. My bilirubin count has been stabilizing. Please continue to pray that it stays in normal ranges. My white count was up to .2 yesterday, finally up from .1, so we're making progress. I've been reeiving Neupogen shots for several days now to help with that. Also lots of platelet infusions and blood at least once a week. If you live in the St. Louis area, Barnes is always in need of platelet donors. You can't donate for me specifically, but know that they will be used by someone who needs them.

As usual, thanks so much for all of your prayers on our behalf, and for your encouraging comments, notes, and cards.

Blessings,
Amy

Bald again

2007-07-12T20:51:00.000-05:00

I had my head shaved tonight, so I'm bald once more. I don't mind very much, and would rather get it out of the way than deal with the days of shedding.

In the meatime, things are about the same. Still battling fevers off and on, mucocitis and my bilirubin count is a little high. They are starting me on a new drug for that. Please pray that the count returns to normal and we aren't seeing this trend as a result of liver damage.

Thanks for your prayers, as always.

Hanging in there...

2007-07-09T15:54:00.001-05:00

Fevers are still coming and going, but the doctor was just in and said he's not too worried about them. My liver numbers are still looking o.k., too, which is a really big praise. For now we're just waiting for my counts to come back up. They started growth factor shots with me again (Neupogen) a few days ago to help the marrow produce cells. As of last night my counts were:

Hemoglobin - 8.9
Hematocrit - 25.8
Platelets - 9
White Count - 0.1

Fevers

2007-07-07T16:51:00.000-05:00

I spent the early morning hours with a temp around 104-105, feeling really miserable. They aren't sure yet why I'm running fevers, as usual. So far everything is coming back negative so they are switching some antibiotics around today and will continue to manage things in the meantime. (I haven't had a fever since this morning.) They also installed a pain pump yesterday to help with the mucositis. It has been spreading throughout my mouth today. I was just having throat pain.

Thank you for all of your prayers. These are the scary days, when my immune system is non existent and my body is fighting to survive. Please pray that the fevers remain within our control (so far Tylenol has been doing a good job) and that if there is a source to identify, we can find it. It would be nice to get off some of these "big gun" antibiotics as they come with their own list of side effects.

Livi won the race

2007-07-06T16:27:00.001-05:00

Livi went to be with Jesus this afternoon after her battle with leukemia. Our hearts are broken for her family and this devastating loss. Please keep them in your prayers today.

Friday morning

2007-07-06T08:25:00.000-05:00

Midday Update:

Heart monitor is off, and the stitches are out from my biopsy site. The EKG and chest x-ray came back looking fine. I'm not sure why I had an accelerated heart rate last night, but it's not altogether uncommon for me. The fever I had was very low grade so we won't be making any major antibiotic changes.

Sometimes the nights are so long. After posting last night I started in with a fever -- low grade, but enough to start the usual pre-emptive strike of chest x-rays, blood cultures and antibiotics. In the meantime they feel my heart rate has been too high, so I am also on a heart monitor this morning. I'll keep you updated. In the meantime, please pray for Livi. She's a little one battling so hard right now, and my heart aches for her this morning.

Quiet day...

2007-07-05T21:19:00.000-05:00

No fevers, no transfusions necessary today, and I still need to have some stitches pulled from last week's biopsy. Hopefully I can get the doc on that tomorrow. I'm still waiting for evening rounds -- these guys pull some late hours somedays.

Just thought I'd update that everything seems to be going o.k. today. I'm having some pain in my throat that may be mucositis starting in, but I'm hoping not. In the meantime they cooked up some "magic mouthwash" for me to use.

White count - 0.1
Hematocrit - 28%
Hemoglobin - 9.8
Platelets - 30

We were able to catch some fireworks last night. We found an area on the 10th floor that was nice and empty and enjoyed several different displays across the city landscape. Last year I watched fireworks from the window of the University Hospital in Columbia and my mind was so full, trying to grasp the diagnosis and all that had happened to us within the past 48 hours. I'm so grateful to be here a year later and find myself wondering some of the same things once again -- praying this does the job and I can achieve a remission that allows me to still be here next year. Ultimately it is my prayer that God be most glorified in my life -- no matter what that means. I pray it is in my ultimate healing here on earth, but also know it may be in Heaven that He chooses to finally kill the cancer. Thank you so much for being our prayer warriors this last year and continuing to pray with us for His perfect miracle.

Mylotarg update

2007-07-04T19:14:00.000-05:00

I ended up needing 50 mg of demerol to control the chills I got this afternoon, but I never ran a fever, so that's a praise. It did its job of knocking my counts down.

White count - 0.0
Platelets - 6
Hematocrit - 19%
Hemoglobin - 6.9

As a result, I'll be getting two units of red cells and a unit of platelets tonight. I was warned that it could cause a huge drop in my blood counts, and it sure looks like that's what happened. In the meantime I've been feeling o.k. since my demerol nap this afternoon and I'm anxious to get the much needed blood boost.

We heard back on the CMV test and it was negative. All of the cultures on my central line also came back negative, so it looks like they are going to be able to leave it in. I've been on antibiotics to help clear up the skin and they appear to be working as it looks a ton better than it did when I came in over a week ago. Saving the line is a huge praise -- I definitely didn't want to go through a third placement.

Thanks so much for your prayers.

Mylotarg

2007-07-04T11:26:00.000-05:00

I just finished the two hour infusion of mylotarg. As the nurse said, "Now the fun begins!" We're waiting to see how I react. The "biggy" is VOD or veno occlusive disease. To summarize, basically the small veins leading into the liver can become blocked by the amount of cells we just killed and can cause the liver to swell, resulting in acute pain, or sometimes just long-term liver failure (similar to an alcoholic, though usually the person's liver fails within three months.) More immediate, less severe side effects remind me of those with the anti-fungal Amphotericin-B -- "shake 'n bake" with fever and severe chills. I'm on benadryl and tylenol to help control possible side effects, and if the chills kick in they will use Demerol.

So, hopefully the afternoon will be a quiet one and we will see great effects from this drug. My white count is at .02 right now, so I'm basically at my nadar point, though they said mylotarg can cause you to hit nadar the same day -- for those not familiar with chemo the nadar point usually takes about 7-14 days to occur, which is why I'm in the midst of it now from last week's chemo. I don't know if I do a very good job explaining. It basically means my marrow is wiped out and I don't have a white count. I may need red cells and platelets as a result of the mylotarg today as well. We'll see.

I'll update more later. Thanks, as always, for your prayers.

Happy Anniversary?

2007-07-02T17:06:00.000-05:00

I was diagnosed one year ago today. To still be here, having never acheived remission, is in itself a miracle. I have learned to marvel at the little things along the way...and I am quite grateful to be able to update today.

Though I admit there's not much to say. I finished chemo yesterday and today has been uneventful, but uneventful is good. I haven't heard anything regarding my breathing episode last week or the results of the CMV test. For now we're just holding on until Wednesday, praying that the mylotarg acheives remission without killing me.

Brandon is able to be with me for the rest of the week, and Gary is spending a few days with family. He has a hard time sleeping at the hospital (don't we all?) so shorter visits seem to work best for him.

Enjoying today and praying for so many others who are battling right now along with us. Livi...Joe...know you're especially in our prayers.

Almost done with chemo...

2007-06-30T21:45:00.000-05:00

Today was day four of five of the FLAG course. I'm still getting all three chemo drugs, plus two sterioids and growth factor (the "g" in flag.) Yesterday was a rough day. I had some breathing problems. We're not sure why, yet, just that I had inhilates in my lungs (i.e. fluid) and started hyperventilating for a while. That was my first experience with hyperventilation. I just felt like I couldn't get my lungs to expand at all. My ox-sat levels dropped so I spent some time on oxygen along with some Robitussin/codeine mix to help manage the cough. Once things cleared up I felt a lot better, and I've been o.k. today. We're waiting on test results on the fluid that showed up on the chest x-ray. One thing they are testing for is CMV.

My blood counts also took a pretty severe hit yesterday. My white count was down to 4.1 yesterday from 19.2 on Thursday. I got both blood and platelet transfusions last night as well, and will most likely get platelets again this evening.

My boys are here tonight, which has definitely made the battle of the past few days much more worth it -- I have really enjoyed spending the evening with my Gray.

Thanks so much for all of your prayers. Please keep them up! Tomorrow will be my last day of FLAG chemo, and then I will have mylotarg on Wednesday. For now they are planning to give me a full dose, depending on what my liver looks like by then. It is a highly toxic drug for the liver, so we have several concerns. It specifically targets snd destroys the protein CD33 in the cells, and I have been told that 95% of my blasts express CD33, so we are very hopeful that this will bring about remission for me.

FLAG Day 2 of 5

2007-06-28T14:29:00.000-05:00

I started chemo yesterday afternoon. The drugs run rather quickly, so it's not the continuous or hours long infusions I have come to know. That aspect is kind of nice. I'm also still on two different IV antibiotics for my central line and hoping it won't need to be pulled.

I haven't slept well the past two nights, and as a result I can barely keep my eyes open today. I've had a few good naps already. I'm taking dilautid still for the pain in my line and back (from the biopsy) and that tends to make me sleepy as well. I started feeling some nausea last night after finishing chemo but so far it has been manageable and I've been able to keep meals down.

Brandon stayed with me through yesterday afternoon, but he will need to work the next several days. I am hoping he can bring Gary up one evening soon so I can visit with him. He is allowed to visit as long as he passes the health exam at the door. Thankfully he just finished cutting a few teeth last week, so his typical symptoms from that have disappeared and Lord willing, he'll stay healthy. As my counts fall over the next days I will basically be isolated, except for brief visits from family.

For now things are really going as well as can be expected. I am somewhat nervous about the final chemo drug, mylotarg, as it can cause significant liver damage, especially when used with younger post-transplant patients. The doctors have made a good case for using it, though, and say it has the best chance of getting me into remission. If I can reach remission, we will do a second transplant with another sibling donor. That is the what I'm racing for -- the ultimate goal and the only chance of a "cure."

Happy Birthday to my dad today.

Biopsy #9

2007-06-27T10:57:00.000-05:00

The biopsy went well this morning. i requested the same meds as last time, and they really seem to help make it more bearable. They also took a DNA sample from my mouth and a skin biopsy as part of the study. I am really glad I was given an opportunity to participate in a study. So many others have gone before me and I finally feel like I can contribute something.

I'm still on antibiotics in an attempt to save my central line. The plan is to start chemo this afternoon. I have felt moments of peace -- just realizing that God has me exactly where I'm supposed to be right now, and His grace is always sufficient.

Tuesday evening update

2007-06-26T23:58:00.000-05:00

I'll probably have a series of shorter, more frequent updates for the next few days.

As far as I know the test went well this afternoon on my heart and we'll be starting chemo tomorrow. It is a five day regimen with mylotarg on day eight. At this point it looks like we'll use all four drugs -- fludarabine, idarubicin, cytarabine (Ara-C) and mylotarg.

I am also scheduled for a bone marrow biopsy/aspiration in the morning. The resident asked me this evening if I would be willing to participate in a research project and bank cells for genetic mapping. I thought it would be a good opportunity to give something back, and then when another doctor came by later for rounds he made it seem like he wanted to do a biopsy one way or the other, so I can't say it's totally heroic or anything. They will be able to check my cytogenetics once again and make sure nothing has changed since my last biopsy. I think everyone familiar with this blog knows how I feel about biopsy -- please pray that it goes well.

And thank you, once again, for your faithfulness to pray. I feel like I am always throwing out prayer requests and few thanks -- I realize the gift it is and appreciate all of you so much.

A prisoner once again

2007-06-26T13:59:00.000-05:00

Why is it that being admitted to the hospital feels like being imprisoned? Not that I've been to prison, but still...the similarities seem striking.

We met with my doctor this morning after consulting with multiple other hospitals and doctors. I was admitted around noon to the sixth floor and will begin chemo either tonight or tomorrow. We decided to do the FLAG therapy, and we're still debating about whether or not to use mylotarg along with it. (Leaning against it per advice from Sloan-Kettering and some other "big" institutions.) In the meantime I'm headed downstairs for a MUGGA test to make sure my heart can handle idarubacin and will most likely have my central line pulled and replaced.

It's hard to be here again, and there are a lot of emotions. My room is without much of a view, but thankfully there is a courtyard several floors down that I can gaze down upon, so it's not all brick walls staring back at me. I miss my Gary, but I am fighting for him.

Please pray for endurance.

Update

2007-06-25T10:54:00.000-05:00

I'm at Ellis today for labs and red cell transfusion. Counts today are:

WBC - 34.1
Hgb - 8.5
Hct - 24.9
Platelets - 40
Blasts - 81%
Abs Blasts - 28
Neuts - 3%
Abs Neuts - 1.02

I'll also be getting vancomycin today because it appears that my central line is infected. It's been very painful the past 24 hours to the point that I've taken dilautid. They almost decided to pull it today, but I just spoke to the doctor and they're going to let Barnes handle it. I am really upset about the idea of losing my central line. Having a new one placed means surgery and several days of pain, plus, I have built up enough scar tissue that I'm not sure if they can place a new one in my chest and the other alternate sites are less than ideal. I have an appointment with my doctor at Barnes tomorrow morning and may be admitted afterwards. Please pray that the Lord will protect me from infection (it will take a few days to get the cultures back to see what exactly is going on), that I will not react to the Vanc as is typical for me, and that my doctor will be open to a second transplant.

Thank you to everyone for your encouragement. Also, thanks to those who have given us contact information for other doctors/hospitals. I really want to pursue a second transplant and we're making calls today to see if other hospitals will be willing to work with me if my doctor still says no tomorrow. I know God holds the heart of the king and controls it as He wills.

The beginning of the end?

2007-06-22T22:22:00.000-05:00

I wasn't sure how to title this post, as I think the end probably began a long time ago. But once again it seems we've hit what may prove to be the end of the road rather than a mere bend.

I have stopped responding to Decitabine, and my doctors at Ellis have basically said there is nothing more they can do for me. They recommended contacting my transplant doctor at Barnes to see what they could offer me. I don't qualify for any of the current clinical trials and though a second transplant was mentioned earlier in the week, my phone call with the doctor this evening was less than promising as he summed up a second transplant as the "height of medical futility." His recommendation was a type of FLAG treatment, which as some may remember was also recommended back in February. We chose not to go that route then, and I don't see why I would choose to go that route now. I was told that if I could achieve significant remission with FLAG (assuming I survive the drugs and still have enough bodily function to qualify -- which with these drugs is a long shot) they may consider a second transplant at that time. Given the fact that I have never acheived remission I feel they are basically trying to pacify me with a treatment that is basically a death certificate. Being told that if I am admitted I can expect to never leave the hospital isn't exactly encouraging.

For now the plan is to go to Ellis Monday morning for lab work and make as many phone calls as it takes to get as many second opinions as possible, and try to get in to see my local oncologist on Tuesday before going up to Barnes also on Tuesday, where we will discuss the options with my transplant doctor. He said I can plan to be admitted from the clinic -- I may take my walking papers and come home to die. Though, I am not naive enough to believe that death for me will be either at home or easy. This is when you sign the papers telling your family it's o.k. to pull the plug, because that's basically what you know it will come down to.

So, needless to say, we ask for your prayers, that someone will come up with something -- that the doctors may have a change of heart about a second transplant. I know it is a longshot, and I know it is a horrible, horrible procedure. I know that better than anyone. But I don't want to be told I'm out of options, and I don't want the only options presented to me to be ones that are merely a terrible way to die.

Storm heaven for us, please. We need all the wisdom God can give.

The Final DLI

2007-06-12T12:15:00.000-05:00

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.

Labs

2007-06-07T11:00:00.000-05:00

Today's labs were trending downward, which indicates the chemo is doing its job. The blasts are still higher than I would like, but hopefully they will continue to drop over the next few weeks, along with the help from the final DLI.

Thanks for your prayers.

Chemo Round Four

2007-06-04T10:23:00.000-05:00

Our appointment with my primary oncologist went well last Wednesday. He was pleased with how things have been going. I'll meet with my transplant doctor prior to the DLI next Tuesday and we'll most likely schedule bone marrow biopsy/aspiration #9 and make plans regarding what the future holds as far as continuing chemo and a possible second transplant.

In the meantime, I'm not pleased with my labs today. My white count doubled and blasts jumped to 21%. I'm trying not to jump to conclusions, but suffice it to say it's never a good thing when that happens. Please pray that the chemo this week will be successful in knocking the blasts back down and that the final DLI on the 12th will be effective. And for my sanity until the next set of labs on Thursday.

All heavy laden acquainted with sorrow
May Christ in our marrow, carry us home
From alabaster come blessings of laughter
A fragrance of passion and joy from the truth

Grant the unbroken tears ever flowing
From hearts of contrition only for You
May sin never hold true that love never broke through
For God's mercy holds us and we are His own

This road that we travel, may it be the straight and narrow
God give us peace and grace from You, all the day
Shelter with fire, our voices we raise still higher
God give us peace and grace from You, all the day through
- Jars of Clay

DLI #2 Update

2007-05-29T15:07:00.000-05:00

So far no GVHD. I wasn't feeling great a few days after the infusion, and wondered if I was starting in with something, but it cleared up without treatment. I guess it's full speed ahead with next week's chemo and the final DLI on the 12th of June. I'll meet with Dr. Perry in the morning but I don't expect any changes to the plan.

Today finds me at SEU (Symptom Eval Unit) in the University Hospital. Due to the holiday, Ellis Fischel's AIU bumped me here for a day of platelet and blood transfusions. I haven't been here since I left last October, headed to transplant. It's been really great to see my old nurses, but it has also brought back a flood of memories, some I thought I had forgotten. When the hospital meal tray arrived at lunch I couldn't even touch it. Everyone remarks on how good I look, and I remember that "death warmed over" was probably a compliment when I left last year. Most of the nurses have never seen me with hair or some meat on my bones.

We're celebrating birthday week at our house -- Brandon and I both have birthdays within the same week and Gary is 18 months old today. We celebrated his 1 1/2 birthday yesterday -- yes, 1/2 birthday. I decided since I missed the first and don't know what will be going on with the 2nd, we were gonna woop it up for his 1 1/2. I'm excited about turning 26. Last year I declared to anyone who would listen how old I was getting and that I was never going to celebrate another birthday...what a difference a year makes. WIthin a month of that statement I was certainly eating my words. I said early in my blog posting that I had hope to see my 30th birthday -- and I still cling to that hope.

DLI #2

2007-05-18T15:10:00.000-05:00

The 2nd DLI is finished. We infused 50 million cells this time. It was my first experience with frozen cells, and having heard much about the taste of the preservative used in the freezing process I wasn't quite sure what to expect. It's weird. That's all I can really say about it. They're keeping me in observation for about another half hour, and then we should be able to head home. It has been a long day.

The cryo-lab storage container for the cells.

My next round of chemo begins June 4th and the next and final DLI is scheduled for June 12th, assuming I don't present with GVHD in the meantime. I spoke to the doctor today about the possibility of doing a second allogeneic stem cell transplant if the DLIs are unsuccessful, if we are able to keep my blasts low using Decitabine. He said he would think about it. It helps that I have so many siblings and matches readily available. I am beginning to realize I am a rarity at this point. The doctor said that relapse immediately after transplant usually has a very fast disease progression, thus the two month prognosis I was given. I think they are all surprised by where I'm at right now. I've never been the optomist so I am hesitant to get too emotionally involved in the fact that things seem to be going o.k. right now. I'm still very, very sick. I still require seemingly constant tranfusions...but I am alive. Nothing short of a miracle at this stage.

Thanks so much for all of your prayers.

Transplant +6 months

2007-05-13T20:11:00.000-05:00

Today marks the six month anniversary of my transplant. I would love to be sitting here in a state of remission, but even though I'm still dying I thought it was worth noting. The odds are certainly against me to make it a year past transplant, so I value each day. I try to remember that I've beaten multiple odds just to be at this point, and that I am an individual, not a statistic. I was essentially killed four times in as many months last year...sometimes I wonder how it is possible that I am still alive.

I've been using a much smaller bandage on my central line, giving the majority of the skin some time to heal. It seems to be doing so, slowly but surely. I'm still not sure what to do about the skin immediately around the site. Someone mentioned an alternative bandage that I am not familiar with -- I need to check with my doctor to see if it is an option. I was originally told central lines only stay in about six months, and I'm past seven months now, so I'm not sure if they really know what to do once the skin starts rejecting adhesive. Thanks for your prayers. I'm really grateful that the site itself is remaining free of infection. My counts will be falling this week, so it's especially important to avoid infection.

Friday at 8 a.m. I'll be at the Siteman Cancer Center (Barnes) for my next DLI. It will be a larger infusion of cells this time (last time was 10 million) and the same prayer requests apply. It would be "good" to have manageable GVHD and the Graft vs. Leukemia effect. I will be honest and say I am dreading Friday. Anyone who knows anything about GVHD knows why. It's like holding a loaded gun to your head and pulling the trigger. I just can't help but feel a little crazy for going through this again, but I know I don't have any real options. Times like this I stop and remember I'm dying, and any benefit outweighs the risk at this point. I'm anxious to see what my labs do this week. We've been told repeatedly that it takes at least three months to see an effect from Decitabine, and since I've completed three courses I'm really hoping the blasts stay down this time and don't bounce back up again. I watched a documentary on Discovery last week called "Living with Cancer." There was no mention of God at any point during the show, but other than that I found the comments by those being interviewed echoed a lot of my own thoughts. Lance Armstrong talked about taking a crash course in oncology, and always getting copies of his labs and test results and viewing them like a score in a competition. I've approached leukemia in the same way -- often living and dying emotionally by the latest results. Not sure if that's the best thing to do, but to fight is to live in my opinion.

Prayer Request

2007-05-08T16:16:00.000-05:00

I've developed a pretty nasty rash around my central line (Hickman). I mentioned it as a prayer request before -- this is about ten times worse and I'm really worried about infection. I had the doctor check it this morning while at the hospital for chemo and he said it looks o.k. so far, but if I start running a fever or if it looks infected I'll need to start an antibiotic. Worst case scenario, since my counts will be falling from chemo, I could end up in the hospital on IV meds and need to have the line removed.

I do not have a latex allergy, it's just skin that has been covered up for seven months that has had enough. I've tried every type of bandage that they make. Hypafix seems to be the best option right now because the tagaderm is condensating on the inside due to humidity and a wet dressing encourages a fungal infection, so I can't go there. It's extremely uncomfortable and somewhat swollen -- I'd really appreciate prayer that it will clear up quickly.

Also, to update, today was day two of chemo. I started out the week with blasts at 2%, which is the lowest they've been pre-chemo, I believe. I think this round is hitting me harder than the previous one, but time will tell.

Thanks for your prayers.

Amy

A Sovereign God

2007-05-03T16:52:00.000-05:00

I'd like to begin with an excerpt from "Christ and Cancer" by John Piper.

God controls who gets sick and who gets well, and all his decisions are for the good of his children, even if they may be very painful and long-lasting. It was God who subjected creation to futility and corruption, and he is the one who can liberate it again. In Exodus 4:11, when Moses refused to go speak to Pharaoh, God said to him, "Who made man's mouth? Who makes him dumb or deaf or seeing or blind? Is it not I the Lord?" Behind all sickness is finally the sovereign hand of God. God speaks in Deuteronomy 32:39, "See now that I, I am he, and there is no God besides me; it is I who put to death and give life. I have wounded and it is I who heal; and there is no one who can deliver from my hand."

But what about Satan? Isn't he the great enemy of our wholeness? Doesn't he attack us morally and physically? Wasn't it Satan who tormented Job? Yes, it was. But Satan has no power but what is allotted to him by God. He is an enemy on a chain. In fact, for the writer of the book of Job it was not wrong to say that the sores afflicted by Satan were sent from God. For example, in Job 2:7 we read, "So Satan went forth from the presence of the Lord, and afflicted Job with loathsome sores from the sole of his foot to the crown of his head." Then after Job's wife urges him to curse God and die, Job says, "Shall we receive good at the hand of the Lord and not receive evil?" And lest we think that Job erred in attributing to God his sores afflicted by Satan, the writer adds in verse 10, "In all this Job did not sin with his lips." In other words, it is no sin to recognize the sovereign hand of God even behind a disease of which Satan may be the more immediate cause.

Satan may be sly but on some things he is stupid, because he fails to see that all his attempts to despoil the godly are simply turned by God's providence into occasions for the purifying and strengthening of faith. God's goal for his people in this age is not primarily to rid them of sickness and pain, but to purge us of all the remnants of sin and cause us in our weakness to cleave to him as our only hope.

My son, do not regard lightly the discipline of the Lord, nor faint when you are reproved by him; for those whom the Lord loves he disciplines, and he scourges every son whom he receives . . . he disciplines us for our good, that we may share his holiness. All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness. (Hebrews 12:5, 6, 10, 11)

All the affliction that comes to the children of God, whether through persecution or sickness, is intended by God to increase our holiness by causing us to rely more on the God who raises the dead (2 Corinthians 1:9). If we get angry at God in our sickness we are rejecting his love. For it is always in love that he disciplines his children. It is for our good and we must seek to learn some rich lesson of faith from it. Then we will say with the psalmist, "It was good for me that I was afflicted, that I may learn thy statutes . . . I know, O Lord, that thy judgments are righteous, and that in faithfulness thou hast afflicted me" (Psalm 119:71, 75). That is my fourth affirmation: ultimately God controls who gets sick and who gets well and all his decisions are for the good of his children, even if the pain is great and the sickness long. For as the last verse of our text, Romans 8:28, says, "God causes all things to work together for good to those who love God and are called according to his purpose."

http://www.desiringgod.org/ResourceLibrary/Sermons/ByTopic/32/243_Christ_and_Cancer/

I have been learning a lot about God this past year. I have always professed belief in a sovereign God, but the events of this past year have forced me to live my theology out loud. Easy enough to believe in a sovereign God when the way is easy, the struggle comes when life gets hard. This past week I have also been focusing on realizing that a God who does all things to His ultimate glory is also a loving God who understands my pain when no one else does. Spurgeon writes the following in Morning & Evening:

Believer, rest assured that the heart of Jesus cares about your meaner affairs. The breadth of his tender love is such that you may resort to him in all matters; for in all your afflictions he is afflicted, and like as a father pitieth his children, so doth he pity you. The meanest interests of all his saints are all borne upon the broad bosom of the Son of God. Oh, what a heart is his, that doth not merely comprehend the persons of his people, but comprehends also the diverse and innumerable concerns of all those persons! Dost thou think, O Christian, that thou canst measure the love of Christ? Think of what his love has brought thee—justification, adoption, sanctification, eternal life! The riches of his goodness are unsearchable; thou shalt never be able to tell them out or even conceive them. Oh, the breadth of the love of Christ!

Through a records request we discovered this past week that I do have chromosomal abnormalities -- I've been told all along that they were not able to find any. A FISH test done at Barnes to check engraftment after transplant also showed a specific abnormality that allows us to know the specific type of leukemia that I have -- t(11;19)(q23;p13.1). It is still categorized as AML M4, but goes by the name mixed-lineage leukemia (MLL) and in my particular case could present as either MLL-ELL or MLL-MEN (virtually identical). It is rare, affecting less thant 2400 people per year, with a median age of 19 and a median life expectancy of 6 months (most cases are infants, though all ages are susceptible). The chromosomes also indicate that I had a form of MDS prior to AML, as I had suspected. MDS can last for months or years before progressing into AML, so it is impossible for us to know how long I have really been sick. In light of this new information, we spent the weekend researching and contacted a doctor/professor currently studying this specific type of leukemia at the University of Chicago. I asked if he could point us to any specialists or clinical trials aimed specifically at MLL, and he said he wasn't aware of any, but that my current treatment "appears appropriate and state of the art." Decitabine is also the drug of choice per Harvard for treating this particular type of MLL. We consulted with my local oncologist yesterday and it is his opinion that the Decitabine is definitely keeping the disease at bay, though it is not yet achieving remission. We are going to continue with this course of chemo and the DLI as planned. I'm not sure what comes next if the Decitabine proves ineffective. My doctors are still doing research to ascertain the best options. Obviously it is our prayer that the Decitabine will prove effective in putting the disease into remission. It has been a gentle chemo, which I have greatly appreciated.

I have been amazed to realize that once again, God has gone before, and even though we just discovered this information, I am already on the treatment of choice. He truly is the One who heals -- the One who preserves our every breath.

I continue to need regular transfusions. I figured out yesterday that it is taking approximately 12 donors per month to keep me alive. They are strangers that I will never meet -- and a simple "thank you" seems insufficient. There are over 200,000 people currently living with forms of blood cancer. Do the math -- and please donate blood or platelets if you're able.

As always, thank you for your prayers.

April Update

2007-04-21T20:02:00.000-05:00

I read another blog this week by a woman about my age who also has AML. She's currently undergoing the same experimental treatment as me (decitabine) and expressed that if this doesn't work, it's the end of the road for her. I understand the emotional rollercoaster she is on. Fighting to live. The good days for us are the worst days for the rest of the world...our feelings become very relative. My definition of "good" has come to mean an entirely different thing than it did a year ago.

That being said, things are going as well as can be expected right now. Chemo week came and went without too many horrible side effects -- just the standard complaints. I've been able to keep my weight up for the most part, and finally exceeded my starting weight from a year ago. It's still too early to tell, really, if the decitabine is working, though it appears that the disease isn't progressing at a rapid pace. I'm still here -- that's proof enough, I suppose. I still require regular transfusions. Red Cross commercials make me cry. I don't think people really realize the gift they are giving when they donate blood product. It is truly a gift of life. My counts are low this weekend and I am fighting the weariness, shortness of breath, aching muscles, and all that goes with it. It has me actually looking forward to spending Monday getting transfusions.

I may not update for a little while, unless there is something important to note. I'll see my oncologist on May 2nd, do a week of chemo starting May 7th, and have another DLI on May 18th. I'll be getting a much larger "dose" of cells this time, so I would appreciate prayer that it is effective without killing me. Trust me, we transplantees view GVHD with much fear and trembling.

As always, thank you so much for your prayers, love and support.

Quick Update

2007-04-12T14:19:00.000-05:00

Only one more day of chemo! I'm excited...going to the hospital every day gets old, but again, I'm thankful that I'm not inpatient. So far I haven't noticed many side effects. The skin around my bandage seems to be healing nicely. Thanks for all the prayers! We had a doctor check it yesterday while I was getting chemo, just to be on the safe side. I may switch over to Hypafix (spelling?) tomorrow -- one of my nurses calls it "old lady tape." It's a lot easier on the skin, though I tend to avoid it because it's not waterproof and makes showers difficult. Several have suggested using the tegaderm over top, so I think I'll give that a try. I never really thought I had sensitive skin but tape has often been an issue over the past year.

My platelets seem to be holding a little bit better this time. They were at 21 today and the fellow on call decided to let me go through the weekend, if possible. She told me what to watch for if they get too low and to call SEU at the main hospital if necessary over the weekend. If they get really low there is some risk of stroke or hemorrhage, but that is supposed to be rare. I forgot to ask for a copy of my labs today so I'm not sure what my ANC is like. I just continue to be cautious and always mask up when out at the hospital.

We'll be meeting with my transplant doctor at Barnes on Tuesday. He wants to make sure I don't have any GVHD that I'm not aware of. I spoke with him on the phone the other day and he has decided to wait on the next DLI. I'll find out more on Tuesday, but for now it looks like May or June. He said in his opinion the disease is progressing slowly, if at all. (Blasts were at 13% on Monday, for those in the know.) I was quite pleased to hear that, especially from the same man who gave me a two month prognosis, but he hasn't been following my labs these past few months, so I prefer to have him repeat that after I show him some records on Tuesday.

Thanks so much for all of your prayers. Have a good weekend!

Chemo Round Two

2007-04-09T11:18:00.000-05:00

I'm writing from Ellis Fischel once again. We've been here since a little before 8 a.m. I'm about halfway done with today's dose of Decitabine, and then I'll start a bag of platelets. They were down to 8 today and as a result I'm covered with petechiae rash. I'm hoping they'll hold better this time. I read over the weekend that it's possible for the body to eventually build up a resistance to platelet infusions and quit responding. For that reason, they don't give any more than necessary.

Prayer requests right now are for mild side effects from chemo. I'm getting Zofran again as a premed, and using another anti-emetic at home. Last time nausea seemed to be the worst side effect, and for the most part I could manage it with the drugs. The other major side effect for me was a constant tense, jittery feeling. I'm currently undergoing hormone therapy to deal with some disease side effects, so it's a bit of an emotional rollercoaster. And of course, low counts. My ANC was up to 1200 today. I was very pleased with that. Still only about half of what a normal person would have on the low end. Also, I've developed an area of broken skin around the bandage on my Hickman catheter. The bandage is called tagaderm, and it's similar to a sticky-sided saran wrap. Sometimes I react to it, and I would appreciate prayer that it would heal quickly and not get infected, as it's only about 1" from the actual catheter site. If the site becomes infected they'll have to pull the line and I'll need outpatient surgery to place another one. I don't even want to think about the possibility. Healing is a slow process when counts are low -- in the meantime I'm keeping Neosporin on it to help ward off an infection.

I hope everyone had a blessed Resurrection Sunday. In light of everything in my life this year, I am especially thankful that Christ has risen, and death has been swallowed up in victory.

Information and some answers

2007-04-06T21:03:00.000-05:00

Over the past months I've received a lot of e-mail. It varies from "I'm praying for you" to detailed advice. I haven't taken the time to reply to all of them, especially the more detailed ones which in turn require a detailed response. It's easy to get tired of explaining things and justifying to family and friends decisions we have made, to be perfectly honest, even though I know the advice and questions come out of a sincere desire to help. So, I've decided to do a "questions and answers" post to address the questions we most commonly receive.

First, I want to explain very basically what AML is. There will be approximately 12,000 new cases in the US this year. Of those, 90% will affect people over 65 years of age. 90% will die. There is debate among the leukemia community as to whether these statistics are accurate based on the fact that most AML deaths are recorded under the secondary cause of death, such as pneumonia or influenza. A family member of the deceased needs to stay on top of the doctor in order to have the cause of death recorded as AML.

AML is a result of acquired genetic damage to the DNA of developing cells in the bone marrow. In my case, they were unable to find any genetic changes, and I haven't been exposed to things like benzene or radiation and never smoked, so I was told it just happened one day like being hit by lightning. (Studies now show that it only takes the carcinogens in the smoke of one cigarette to cause irreversible genetic damage, so I certainly don't rule out second hand smoke as a possibility. Unfortunately none of us have managed to avoid cigarette smoke all of our lives.) We feel there is still a genetic marker somewhere, but it has yet to be discovered. One of the chromosomal changes, dubbed Philadelphia after its place of discovery, was just found in the past ten years. AML is also not a result of a compromised immune system or a failure to think positively.

The effects of AML are an uncontrolled, exaggerated growth of cells called leukemic blasts which fail to function as normal blood cells. My oncologist refers to them as juvenile delinquents. The other major effect is a blockage of the normal cells which in turn causes me to be anemic, have low platelets and become neutropenic. Lots of people have implied that my struggle with low counts and constant need for blood and platelets is because we've chosen to do chemo, not realizing that my disease alone does all the damage of chemo. The difference with chemo is that something is attacking the blasts along with all the other cells.*

The overwhelming advice we are given is to eat only organic or raw foods. I recognize that with most diseases, this is probably a good approach to use along with treatment. And certainly eating healthy is something I've focused on, but an organic or raw food diet poses significant risk to AML patients because our immune system is compromised from the disease. It's impossible to wash all the bacteria from raw foods (such as E. Coli or more common strains), and while most people can handle it, AML patients cannot. It's not just the doctors being "anti natural" -- it's a fact that I have to deal with everyday. I avoid uncooked foods just like I avoid public places. Unfortunately it goes with the diagnosis. Through study we have also learned that I need to avoid an iron-rich diet which has me avoiding meat along with a lot of green vegetables and some fruits. It is our understanding that the leukemic blasts "feed" on iron and I honestly feel my disease is progressing at a slower rate with these diet changes, though only time will tell for sure.

The one aspect of the disease that I hate the most is the compromised immune system. I have missed anniversary parties, weddings and funerals this past year, always weighing the benefit against the risk of death. At this time it is paramount that I stay healthy. AML patients die of secondary diseases as a result of low blood counts. If I stay healthy, I stay alive, and I have time to fight.

I have become increasingly aware of the danger of giving medical advice to others. (As opposed to making someone aware of a possible treatment so they can research how it may apply to their illness.) Even within AML there are subtypes and chromosomal involvement or deletion which cause treatment to vary greatly. What is good for one patient may kill another, and certainly leukemia often gets lumped in with other types of cancer and recommendations are based upon a friend or family member who once had breast or prostrate cancer, the two most common types. It's frustrating, and I often find myself repeating "they're not the same!!" Unfortunately cancer is a very wide category, and each case is unique. To that end, I do not want anything I have written or any treatment options I have mentioned on this blog to ever be construed as medical advice for another patient. My advice has been and continues to be -- learn about your disease. Study it. Learn to communicate with your doctors and get multiple opinions. Try to have a patient advocate. I don't have one professionally, though I feel my husband functions as such, as have other family members when needed. We've consulted with multiple hospitals, cancer patient advocates, oncologists, hematologists, immunologists, naturopaths and a psychiatrist. All have helped to give us information on different aspects of this disease, and I find the knowledge helps so much in our own personal fight.

Again, thank you for the love and care that each e-mail expresses, and I hope this has helped to clarify AML and the treatment options we are pursuing. We have been very grateful for everyone who has taken the time to make us aware of possible treatments, and it is only my intention to "get a reply" to everyone without taking a lot of time away from my family right now.

*I obtained most of this information from the following website:
http://www.leukemia-lymphoma.org/all_page?item_id=8459

Friday Update

2007-04-06T15:27:00.000-05:00

I'm sitting in a bed at Ellis Fischel, about halfway through my second unit of red cells for the day. I've been here since 8 a.m., and it's going on 4 p.m. Transfusions have become a sort of part time job. So far I've needed a blood transfusion about every other week. My platelets haven't been holding well -- I had a unit last Friday, again on Wednesday, and they're in the 30s again today, so I'm sure I'll need more on Monday. I get them anytime the count drops below 20 -- an average person would want to be 150 on the low end, just to give an idea. Anything below 50 is dangerous. A few weeks ago I hit my record low of 7. I don't want to get back there.

I met with Dr. Perry on Wednesday and we will continue with chemo next week as planned. Just like last time -- five days and then off for three weeks. At this point I haven't shown any significant GVHD so I expect to have another DLI 10-14 days after this round of chemo. I don't really have much to say as far as disease progression goes. The chemo drug we are using causes the counts to jump all over the place so there's no real way to tell what's going on at this point. I expect to have a bone marrow biopsy/aspiration after the three month point, sometime in May. Somedays I feel really good, and other days I'm wiped out. My husband compares it to pregnancy when people ask how I feel. I'm tired, nauseous and my iron is constantly low.

I continue to be grateful for each healthy day (outside of GVHD). We have focused on supplements that we feel aid my immune system and I've been thrilled to make it through the past three weeks of low counts without getting sick. I am continually reminded of the risks -- so many AML patients end up dying from something like influenza or pneumonia. If I can stay healthy, I have time to fight this. My absolute neutrophil count (ANC) had been sitting at about 100 but was starting to climb as of Tuesday. They like to see it at 1000 before starting another round of chemo.

As always, thanks for your prayers and for the many ways you bless us.

DLI

2007-03-31T20:39:00.000-05:00

Thanks to everyone for your prayers yesterday. We had an eventful day, though most of the action involved driving to and from the hospital and not the actual procedure. Our tire went flat on the way up, but seemed to be o.k. after a stop at the gas station for air. It made it through the day and all the way home (120+ miles), though upon further inspection today we discovered it to be completely blown and shredded. We had a very rainy drive up, and at one point on the interstate the vehicle in front of us lost control and we immediately followed. Brandon was able to keep control of the vehicle for the most part and thankfully there were no cars in the lane next to us at the time. I'm very shaky about things like that. Even a minor fender bender can be fatal when your platelets are below 20. On the way home, driving slow on a very bad tire, we ended up putting the car in a ditch. Thanks to the Lord and some helpful friends and neighbors, everything is going well today.

Regarding the procedure, Daniel did about five hours of pheresis yesterday. They were able to give me 10 million lymphocytes (the goal was 5-7 million) so I call that a success. The procedure itself was quite simple. I had premeds (benadryl and ativan) and then they injected the 14 ccs of blood product into my Hickman line. Took about ten seconds. The doctor told us he wants to see significant GVHD. The important thing is to catch it early so they can treat it with medication so I don't have long term damage. If I don't have GVHD with this infusion, they will probably do another. He said it often takes 2 or 3 treatments before they see significant GVHD. I don't know if I have that long, so I'm honestly praying we'll see it with this round -- normally flares within about a week. Praying to get sick seems odd, but it would definitely be the answer we need. We met a 26 yo AML patient yesterday who is currently in remission after having a stem cell transplant and subsequent DLI. (He was similar to me in that everything looked good until the 100 day biopsy.) That was definitely encouraging.

I'll see Dr. Perry this Wednesday, and the plan is to begin chemo again on the 9th. If I don't have GVHD with this DLI, we'll do another about 10-14 days out from this next round of chemo. The cells are frozen now so I shouldn't have to ask my brother to go under the needle again, which is nice. He's definitely been a trooper. Those are some BIG needles.

Preparing for the DLI

2007-03-24T15:59:00.000-05:00

My brother (stem cell donor) and I will be going to Barnes in STL on Monday for blood work. We each have to give up about 15 vials in preparation for the donor lymphocyte infusion (DLI) on Friday. I don't have Friday's appointment time yet, but we'll both be there again for pheresis and the infusion. If all goes well I can come home immediately afterwards. I am expecting to get sick as a result of the DLI. We are trying to cause GVHD in hopes of also having GVL (graft versus leukemia) to fight the disease. From what I've read, GVHD of the gut, mouth, skin and eyes are most common. The seriousness varies. It could land me in the hospital or be controlled with prescription steriods. If it doesn't kill me, I have hope of remission. The risks are very similar to having another transplant in a lot of ways. I'm approaching it with much fear and trembling. I've never been the adventurous type, yet find myself doing experimental chemo and procedures in an attempt to save my life. Quite ironic coming from the person who would never consider white water rafting or sky diving. I read about a woman the other day with AML who has undergone four transplants. I told my mom I have more respect for her than any olympian I've ever heard of.

In the meantime I'm staying in. My ANC was down to 200 on Thursday, so my immune system is basically non-existent. I still have to go out for labs twice a week. On Thursday I received blood and platelets. My platelets had dropped to 7, and I expect to need more again soon because one infusion doesn't usually bring them up that much. I hate when they get so low, because it's a battle to get them up again. In the meantime I face a lot of risks, as well as discomfort (easy bruising, petechiae rash, etc). Gary has learned that mommy is fragile and tries to be very careful around me.

Day Five

2007-03-16T14:13:00.000-05:00

I'm done with chemo for the month. So far things are looking o.k., including today's blood work. I received some much needed platelets yesterday but it looks like I'll make it until sometime next week before I need another blood transfusion. From here on out I'll be doing blood work twice a week, and start a second round of chemo on April 9th. My white count is dropping and my neutrophils are still very low, so right now I am just trying to stay healthy enough to give us time to fight the disease. I live with the very real fact that one germ can end my life. I have to remember, too, that my body becomes my worst enemy at this time, as all of the natural bacteria can thrive. I'm on several prescriptions to help control that, and so far the Lord has granted health.

Side effects have been very minimal, which is a praise. Thanks for all your prayers! I don't know yet when I'll be getting the "booster" from Barnes. I'll keep you posted.

**Update**

We heard from Barnes this afternoon. I'll be going in on the 30th for the booster. (Outpatient) We're still waiting to receive clarification as to the exact type of cells I'll be receiving.

Day One

2007-03-12T20:45:00.000-05:00

Cardiac arrest, heart failure, cerebral hemorrhage, pneumonia...the list of side effects on the drug information sheet I received this morning were sobering to say the least. I fought the aspect of chemo that is rarely mentioned -- psychological -- wanting to run but knowing that this poison holds potential life for me. Fighting to live, once again. Praying that this time it will work.

Meanwhile, the disease continues to rear its ugly head, and my blood work reminds me of how sick I really am. Friday's transfusions provided a much needed boost in my hemoglobin and platelets. I'm mostly concerned about my neutrophil count, which was around 800 today. I'm used to seeing those numbers after chemo, not before. This is my first time dealing with low counts outside of the hospital.

Thankfully treatment went well today. I have yet to experience any significant side effects. I'm fighting mouth sores as a result of low counts, and I had some nausea today, but was able to keep everything down with some help from zofran and compozine. Nausea seems to be the most common side effect with decitabine.

I'll be receiving a T-cell or lymphocyte "booster" the week of the 26th up at Barnes, where I received my transplant. The goal is to infuse another 5-7 million cells. I have 3.5 million frozen, so my brother will be going in for more pheresis. I appreciate his willingness to go through it again. I'm nervous about a possible GVHD flare, but it holds some promise of remission, so I'm willing to try.

Thank you for your continued prayers.

Family Photo

2007-03-10T20:01:00.000-06:00

The Plan

2007-03-08T17:24:00.000-06:00

Hast thou not known? hast thou not heard, [that] the everlasting God, the LORD, the Creator of the ends of the earth, fainteth not, neither is weary? [there is] no searching of his understanding. He giveth power to the faint; and to [them that have] no might he increaseth strength. Even the youths shall faint and be weary, and the young men shall utterly fall: But they that wait upon the LORD shall renew [their] strength; they shall mount up with wings as eagles; they shall run, and not be weary; [and] they shall walk, and not faint. - Isaiah 40:28-31

Weary pretty much sums up how I feel right now. I'm getting blood and platelets tomorrow, though, which will help. I made it three weeks without a transfusion. Not too bad...I'll certainly take it.

I'll be starting chemo again on Monday. Round six as far as I'm concerned. We'll be using Decitabine. It's somewhat experimental in that it's not commonly used for AML patients, but it has been recommended to us by several doctors, including Ohio State. (Ohio is currently using it with their patients, and also within at least one clinical trial that I know of.) It is supposed to be a "gentler" chemo as far as side effects go. My counts will be low, but they already are. That's the nature of AML. We are still working with my transplant team at Barnes to see about getting a stem cell booster after chemo. There is some risk of a GVHD flare, but at this point in my life all of the options hold considerable risk.

The chemo will be administered outpatient -- one hour a day for five days. I can stay out of the hospital as long as I'm healthy, so my prayer is of course for good health. I would also like to continue taking the Mannatech throughout this course, so minimal side effects such as nausea and changes in taste would also be helpful. We may ease up a bit on the diet restrictions I've been following. Weight loss is an issue for me. I just reached the 100 pound mark a few weeks ago.

The best thing about getting treatment is probably having access to the university's high speed internet, so I'm sure I'll keep everyone posted throughout this next week. We live far enough outside of Columbia to be forced to use dial-up as our home connection.

Thank you, once again, for your prayers.

Update

2007-03-02T23:24:00.000-06:00

Narrator: Little did he know that this simple seemingly innocuous act would result in his imminent death.
Harold Crick: What? What? Hey! HELLOOO! What? Why? Why MY death? HELLO? Excuse me? WHEN?
(quote from Stranger Than Fiction)

I was sitting in the waiting area of Ellis Fischel too early this morning when CNN broadcast a news story about several teenagers who died from a tornado yesterday, as well as a bus crash in Georgia that killed several college students. I was pondering the fact that life is so brief, and none of us know when we will be taken, or what will take us. Even now, it's easy for me to think the question is pretty much answered, but ultimately I don't know what will take me home, or when. I know I may sound hopeless or morbid to some of you, but that is not the case. I am preparing for a possibility of death. I think it is only prudent to do so in my situation, and honestly, I think it is prudent for everyone to do. None of us are immortal, and care should be taken to consider what comes next. I shared with a friend recently that I had been reading several articles on John Piper's website (www.desiringgod.com) regarding Heaven, as though studying up on some country I'm visiting on vacation soon. It's just all of a sudden become a very interesting topic to me. Sad that only the prospect of death has me at this place, because I believe as Christians we should be focusing on the fact that our stay on earth is quite brief and very temporal. Very little matters when you view it in light of eternity.

I told my husband the other day (who has kept me faithful all these months) that I am finally learning how much God hates sin. I HATE cancer. I am sick of it. And I realize cancer is just one more visible sign of sin in this world. So ultimately, I hate sin. And how much more does God hate sin? I am also realizing how helpless I am in this battle against AML. Just as helpless as I am, totally depraved and living in sin from the second I was born. Ultimately God is the cure, and He chooses to show mercy and grace as He wills. (Titus 3:5) He has already rescued me from the ultimate death of sin, and I trust He can rescue me from AML if He chooses. But if not, ultimately the price of sin has been paid, and I know I am secure, and I am thankful every second for the gift of faith. "My faith is like shifting sand, so I stand by grace." - Caedmon's Call

We've decided against pursuing treatment out of state at this point. A change in environment right now poses significant risk, and we've seen the Lord pretty effectively close the doors on a few options we were considering. The Phase One clinical trials my doctor mentioned are being conducted at Ohio State University. After speaking with an RN who heads up the AML trials there, we've decided against that route at this time. She pretty much summed it up with the statement, "If they don't kill her, which they probably will, she'll wish she were dead." We're not at that point yet. I think it is a noble thing to dedicate your body to science before your death, but I also know the people who do so have no other options.

At this time we are trying to get insurance approval for the chemo drug Decitabine, which is being used in conjunction with another drug at a trial in Ohio. It was recommended to us by Ohio and my local team as an "easier" (i.e. side effects) chemo drug, but they said they are having a hard time getting it approved by insurance for use at Barnes or MU (University of Missouri at Columbia, to clear up some confusion). We contacted the insurance company and they said they would look into covering it, so the social workers here are working on it. I hope to have an answer early next week, and if it is a yes, will probably go back into the hospital very soon. I'm already neutropenic, so there is a possibility I will end up there from an infection rather soon, anyway. It's only taken a few days for me to be reminded of how swiftly this disease works. Assuming all goes well with the chemo, I would also receive a stem cell booster from my brother -- some frozen, and possibly some newly obtained. I am being told that it is doubtful this will put me into remission. At best it may buy me some time. We'll see.

We've also been offered a second stem cell transplant by Ohio State. I don't know how feasible an option this is. Right now I'm kind of considering it a last resort, and again, I'm not quite there yet.

In the meantime, I'm getting regular bloodwork at Ellis Fischel. I'll need regular blood and platelet transfusions over the next weeks. (Thank you again to those who donate blood products, I have certainly mooched quite a bit over the past months. Barnes always emphasized a special need for more platelet donors.) I'm also continuing to use the Mannatech products, along with several other natural supplements and diet changes. Those who know me best know what a challenge this has been for me. I have yet to see an effect in my bloodwork, but it's only been about a week.

Thank you for your continued prayers on our behalf. I know the Lord hears them. Please always remember that even if I do not continue here on this earth, I will achieve ultimate healing in heaven. One way or the other, your prayers will all be answered. It is a miracle that we are not consumed day by day. (2 Cor. 4:16)

Diagnosis: 2 months

2007-02-23T21:24:00.000-06:00

We met with Dr. Westervelt this morning and he basically gave me two months to live, possibly three. I admit I was thinking it might be a little longer than that, but I also went into today knowing that AML is extremely aggressive and it probably wouldn't be a great prognosis. He did offer us one option, and referred to it as FLAG treatment with a "booster" of stem cells from my brother. They want to admit me on Monday. The drugs he mentioned were either ones I've had before or are similar in their structure to ones I've had before, and sounded very much to me like induction treatment, which you would do when a person first presents with the disease. One of the drugs works by targetting a specific molecule within the cancer cell that may not even apply to me. He said it has a very poor chance of putting me in remission, but it's a chance and could buy us some time. It also carries a pretty high mortality rate, and being familiar with the drugs (high dose Ara-C and idarubacin (I've had daunarubicin)) I am fully aware of what quality of life would look like for what would most likely become a six week stay in the hospital. I do not want to spend the next six weeks of my eight weeks of life going to hell and back once again, away from my family and especially my baby. I've pretty much concluded at this point that it's not an option I'm open to trying.

In the meantime, I also received a blood transfusion. My iron had dropped over a full point in the past week, regardless of the Aranesp shot. In retrospect, Aranesp should not be given to patients with active myeloid leukemia and from my understanding has just aided in feeding the cancer. The blood is always an energy boost. It's important to note that the 2-3 month outlook is with regular transfusions. It's not just going home and doing nothing. I expect things would progress much faster in that case.

My husband has been on the phone all day and we put a call into my primary oncologist, Dr. Perry. He is out of the office until Tuesday, but very graciously called us from his home tonight. He was not pleased with the information I was given today and asked if we had been informed of "Phase One." We aren't familiar yet with what this is, but he is researching this weekend for me and will call us on Monday. He sounded very hopeful. I am so thankful for my team of oncologists at MU, and trust their expertise, especially that of Dr. Perry and Dr. Doll, who both specialize in blood cancers. They just aren't the same as a tumor based cancer and I like knowing that their main focus is on what I have specifically. He's given us the ray of hope we so desperately needed today.

Another option we are considering is alternative treatment through a clinic in Scottsdale. At first this door was closed to us due to the fact that the treatments would most likely not be covered by insurance. We've had a few families contact us and basically tell us that they don't want money to be an issue. I have been amazed and incredibly blessed by their willingness to share what God has given them, and there really aren't words to express the amount of gratitude we feel. We mentioned one of the possible treatments to Dr. Perry and he said he was aware of them, so he could give us more information on that as well. I just wanted to leap for joy when I heard that, because I wanted so badly to talk to someone who knew more about it, and here is my oncologist aware of alternative procedures.

We are also looking into using Mannatech products to boost my immune system. We've heard a lot of good things, and trust that God can use those products for healing if He so chooses.

At this point we just ask for prayer that we will be able to make the correct decision. We don't have a lot of time, and I am anxious to hear from Dr. Perry on Monday. I trust his opinion greatly. Thank you for your e-mails and notes of encouragement. You've been a blessing.

The Results

2007-02-21T17:33:00.000-06:00

Heaven got a lot closer today. We received the preliminary results from Friday's biopsy. The cancer has returned at 14% currently. We won't have detailed information until the cytogenetics are back from California (about 1 1/2 weeks), but it looks like the same one as before. We have an appointment on Friday to discuss options with the doctor. At this point they are few, and not very hopeful. I am not a candidate for high-dose chemo, which would be a normal procedure at this point, because I've already had every chemo drug, and have most likely built up a resistance. (Plus, I'm at a lifetime limit for some of them.) A second stem cell transplant only holds about a 5% success rate. They mentioned using chemo treatments to prolong life, but I think any hope of a "cure" would rest in experimental clinical trials, which aren't covered by insurance and thus really aren't an option in my mind. We have a lot of decisions to make over the weekend -- the kind couples in their 70s make. It all seems very unreal at the moment. It's hard to be hit with your own mortality. A part of me wanted so badly to believe that I had beat the odds, even though I've been a wreck this past week, knowing somehow that the news wouldn't be good. I think that is a sign of God's grace for me -- I needed to know deep down, because it is just too much to bear all at once.

We are heartbroken. This is not the news we wanted to hear. We wanted to raise our son, to grow old together, but God has different plans for our family. And as much as we don't understand them right now, we know that He is sovereign over this as well. Please pray for us, and for my family especially. My part in all of this is rather easy. I get to die and be with my Savior in glory. I get to miss out on all the suffering this world holds. It is my family who bear the grief and the pain day in and day out. It is for them that my heart breaks.

Hold your loved ones a little closer for me today. Live life a little more -- wear your dressy clothes around the house just because life is really short and stains don't really matter. Don't get impatient about the little things.

Someday we'll understand why.

Approaching 90 days...

2007-02-03T20:41:00.000-06:00

We're now traveling to Barnes every other week for appointments, as hoped. On the "off" week I have bloodwork done at Ellis Fischel here in Columbia. That's been really nice. Dr. Westervelt (Barnes) recommended yesterday that I have an Aranesp shot to help build the red blood cells in my body. He said I will feel a lot better if they can get my hematocrit over 30, and my hemoglobin up as well. (It is still sitting in the 9s.) I do get out of breath easily, and I've been anemic for so long I don't really remember what it feels like not to be...so I am anxious to see how this works. It comes with some nasty side effects, but other than the pain of the shot I've only noticed some additional fatigue. I go back to Barnes in two weeks and we rescheduled my bone marrow biopsy for that date so we don't have to go two weeks in a row. It is now scheduled for February 16th at 9 a.m. Dr. Westervelt said I will have another one done in about three months and then one year from transplant (so sometime in November) and then that will be all unless bloodwork indicates a need for another one. That will bring my total up to 10. Sounds like a nice stopping point to me. :-)

If the biopsy results are good, they will begin weaning me off of the immune suppressant I am currently taking. (Prograf, specifically). The purpose of this drug is to keep my brother's immune system from attacking my body (otherwise known as GVHD). I'm not entirely sure what to expect during this process. For now I'm just taking it a day at a time. We're still staying in to avoid illness. Strep, mono, and pneumonia have been going around at my husband's office, but thankfully the Lord has kept him in good health. I know several of you have been praying to that end, specifically -- thank you!

60 Day Update

2007-01-18T16:40:00.000-06:00

This past week marked 60 days since the transplant. A nice milestone, and I'm happy to say things are still looking good. I fully expected to need a blood transfusion due to low hemoglobin (iron) levels on Friday, as the week before they were in the range for transfusion, but I declined. Turns out those red cells were hard at work for me all week and my hemoglobin levels actually climbed for the first time. (From 8.9 to 9.2 in a week.) They have been offering me shots to kick my system into rebuilding faster. So far I've declined those. I'd prefer to do it on my own and avoid yet another drug with more side effects. My platelets have also been climbing on their own and I'm almost in the normal range. I haven't seen my actual transplant doctor in quite some time, though, so I'll see what he has to say about everything at my upcoming appointment on Friday. I am hoping that I can start going every other week or so now that I have hit the 60 day mark, but we'll see. Eventually I'll be able to transfer back to my local oncologist at Ellis Fischel. I look forward to that day! The drive to Barnes is about 240 miles round trip every Friday, and tends to be an exhausting day.

We received more good news from my 30 day biopsy on Friday. The results were back from California and show 100% engraftment. This means the transplant "took" and was a success. The nurse practitioner I've been seeing seemed very pleased. Brandon said from what he's read it's unusual to have 100% engraftment so soon, so we are very grateful. I should now have my brother's DNA and blood type. As my husband jokingly put it, I can get away with murder. :-) My next bone marrow biopsy and aspiration will be around day 100. It's the "big one" and will determine a lot, so as much as I don't want to go through another one, I recognize how important it is. We went ahead and scheduled it for 10 a.m. on February 23rd.

I am still experiencing various side effects from the chemo (neuropathy, specifically) and other problems that I relate to either mild GVHD or side effects of the many medications I'm on right now. We've been staying in to avoid the flu, so I only get out for doctor appointments. That gives me lots of time to spend with Gary, and I've slowly been taking on more responsibility around the house. Brandon still takes care of most things, though. I'm very thankful for him.

Thank you for your continued prayer on our behalf. We are so grateful to the Lord for the good news and His many mercies on our behalf.

Happy New Year

2006-12-30T11:45:00.000-06:00

December 28th:

I hope everyone is enjoying the holiday season with their family. We had a nice Christmas. The bone marrow biopsy went o.k. Not the best, not the worst. I have had a lot of lingering pain, which I am still dealing with, but overall I think this time was better than the last. I've been seeing a chiropractor and she's been able to fix the rib problem I had, eliminating yet another source of pain.

The medicine my doctor prescribed for the neuropathy caused severe swelling in my feet, ankles and calves, to the point that walking was excruciating. I quit taking it after two days. It seems to have, at least temporarily, helped with the neuropathy, for which I am thankful.

I find out the results of last week's bone marrow biopsy tomorrow at my weekly appointment. I'll let you know. This one doesn't tell us a whole lot, but it tells enough that I'm nervous about the results. Trying to learn not to be. I know it's a faith issue I need to deal with because this is how it's going to be the rest of my life, and I can't spend it on pins and needles waiting for the next test result. I received the following advice on a Christmas card from one of my doctors:

Life is good -- but regrets can drive you mad
Walk blindly into the light and reach out for His hand
Don't ask any questions and don't try to understand
Open up your mind and then open up your heart
Be happy and never hate
Don't waste time, there is something more that you've been handed

It was such a good reminder to me. Life IS a gift -- for all of us. Nobody knows their days. But for me? There is something more I've been handed. Thousands of people went before me and died going through clinical trials while they figured out what the best treatment options were, and thousands more are still dying in those same trials -- always and ever seeking a cure for this horrible disease. I go to the cancer hospital and see so many sick, depressed, horrible looking people that I didn't know really existed before I got sick. Were my eyes just blind to it? I don't know. Did I just look away like everyone else does when I'm out in public without a wig, wearing a surgical mask? I wish for just one day that all of those with cancer would just be brave and go out bald and make everyone aware of how HUGE of a disease this has become. I think you would all be shocked. Maybe then more children would grow up to be oncologists, maybe then more people would register to be stem cell/bone marrow donors. I don't know...in the meantime, I know I pray for a cure, for myself, and for all the others I have come to know who are suffering, some as young as 6 months.

As a side note, as it is nearing the end of the year, and some of you may be looking for a good charity for tax deduction purposes, consider the American Leukemia and Lymphoma Society (www.leukemia-lymphoma.org), or the American Cancer Society (www.cancer.org). They both do a lot of good things for those of us who are ill.

Update: December 30th

I went to the doctor yesterday and got the results from my biopsy. They had warned me that at 30 days they wouldn't be able to tell much because most of the cells would still be immature (one of my doctors described it as a bunch of babies and you don't know if they're going to grow up to be juvenile delinquents (leukemic) or good cells. They had also warned me that it's not unusual at this point to see some leukemic cells. Well, I had 40% mature cells and in capitol letters on the report, "NO EVIDENCE OF ACUTE LEUKEMIA." This technically means I am finally in remission and I asked the nurse practitioner if this was good and I should be happy and she said yes, it's a wonderful report for 30 days. I'll have another biopsy at 100 days, so sometime in February, and we want that to be clean as well. Ultimately they want me to make it a year from transplant (11/13) without a relapse because that greatly lowers the overall risk of relapse. If I make it five years without a relapse, I'll be considered "cured."

I also found out that the extreme nausea and vomiting I struggled with last week is most likely a mild form of GVHD. They had warned me about Daniel's immune system attacking my gut, but placed more emphasis on things like diarrhea and didn't mention vomiting, so it didn't come to mind. I've been doing better the last few days and have a prescription written to take if it gets bad again. It's a steroid, so I would prefer to avoid it if possible. Mild GVHD is a good thing, so I'm not complaining too much. I'm so used to throwing up it doesn't really phase me anymore. It just bothers me because it interferes with weight gain. I was down a few pounds this week but I also lost all the swelling in my legs and feet, and I'm wondering if that had more to do with it than anything else. Otherwise my appetite is good, for which I am thankful.

I'll put an end to this lengthy post and bid you all a Happy New Year! I'm quite content to say goodbye to 2006 and pray for a better 2007.

Love you all,
Amy

General Update

2006-12-14T14:27:00.000-06:00

I thought I should write a general update so you all know what life is like right now. I'm down to one doctor visit a week -- at Barnes in St. Louis. Much better than the original 2-3 appointments for blood draws that I originally thought I'd have. That could change, but I'm happy with it for now. I have an appointment tomorrow and I am curious to find out what my counts are because my energy level is really low. I'm hoping I won't need a blood transfusion, but that's not uncommon at this point and is a distinct possibility.

Originally they wanted to do the bone marrow biopsy tomorrow but they didn't have an opening, so it is scheduled for next Friday, which I believe is the 22nd. We discussed various options regarding pain medication/sedation and I expect this one to go much better. Hopefully I won't have the swelling and pain for days afterwards. I just want to have a very special Christmas with my family this year.

Two of my sisters are still here assisting me as my strength has been slow to return. I'm so thankful for their willingness to serve me and sometimes it seems be my personal maids. Mom pointed out that it's only been a month since I was basically dead -- all my counts at zero, and to not be hard on myself. One of my old friends wrote on the blog to "Rest in the Lord, and trust in His strength." I needed to hear that today, thank you.

Other than the overall weakness, my only other struggle has been with side effects from either the radiation, chemo, or both. I've developed what I think is neuropathy, mostly in my feet, and for some reason mostly at night. The pain is bad enough to keep me from sleeping, though enough pain meds eventually knock me out. I'll be talking to the doctor about it tomorrow. Thankfully from what I've read this is a less common side effect that should eventually go away. I've also lost most of my eye brows and eye lashes, and the hair on my head is still falling out. I had about 3/4" growth prior to the transplant but we had to shave it off while I was at Barnes. I think the chemo they gave me was some rough stuff. I'm anxious for the growth to return. The radiation also leaves me with very, very dry skin that also feels like a sunburn, and even lukewarm water feels hot to the touch. These are little things in comparison to the overall picture, but as I said, I just wanted to let you know what life is like right now.

Blessings,
Amy

...and this little piggy went all the way home

2006-12-05T14:38:00.000-06:00

I was just sitting here thinking of a hymn and decided to look up the words. I didn't know all of the verses, but found it so perfectly appropriate for how I feel today that I thought I'd just post the whole thing.

"Praise to the Lord, the Almighty"
by Joachim Neander, 1650-1680
Translated by Catherine Winkworth, 1829-1878

1. Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is Thy Health and Salvation!
Join the full throng:
Wake, harp and psalter and song;
Sound forth in glad adoration!

2. Praise to the Lord, who o'er all things so wondrously reigneth,
Who, as on wings of an eagle, uplifteth, sustaineth.
Hast thou not seen
How thy desires all have been
Granted in what He ordaineth?

3. Praise to the Lord, who hath fearfully, wondrously, made thee;
Health hath vouchsafed and, when heedlessly falling, hath stayed thee.
What need or grief
Ever hath failed of relief?--
Wings of His mercy did shade thee.

4. Praise to the Lord, who doth prosper thy work and defend thee,
Who from the heavens the streams of His mercy doth send thee.
Ponder anew
What the Almighty can do,
Who with His love doth befriend thee.

5. Praise to the Lord! Oh, let all that is in me adore Him!
All that hath life and breath, come now with praises before Him!
Let the Amen
Sound from His people again;
Gladly for aye we adore Him.

Anyway, today is just a quick update on where things stand. I am home now, and lovin' it. Gary has grown up SO much. It's been great to spend time with him again. My sisters are still here helping because I'm under a lot of restrictions. I can't clean, for one thing, which is really frustrating. Apparently dust is a really bad thing. I have a special industrial strength mask I have to wear whenever I'm out, or around dust, so anyway, they will probably still be here helping me for a while even though I feel stronger everyday. I am still weak and tire easily, but my energy level is night and day compared to other returns from the hospital.

I'll be doing my bloodwork tomorrow at Ellis Fischel, as originally planned, and then I have an apppointment at Barnes on Friday. We'll probably be at Barnes once a week for a while, just so they can keep a close eye on things like signs of GVHD. We can handle that though. It's definitely worth it to be home. Otherwise life will be rather confined for a while as my immune system builds. I have to be especially careful due to cold/flu season, so I won't be out and about much at all. Even a slight fever means a return to the hospital, and I am praying that won't happen.

Please just continue to pray for strength and health, and that GVHD won't be a problem. A little bit of it is an o.k. thing, but our prayer is that the Lord will protect from the serious stuff. Also, I will most likely have a bone marrow biopsy done next week. I know I mentioned it once, but I am struggling with anxiety over going through the procedure yet again, even though the results are so important to know. I wish my brain could forget the pain, but alas...I remember all too well.

I'm thankful for all of you -- I was thinking today about all of the encouragement you have given, and the blessing of some amazing doctors and nurses that the Lord has allowed me to work with. Truly, I feel most blessed.

Home?

2006-12-04T09:58:00.000-06:00

I think I will be going home today, and by home, I mean home. I'm very happy about this. We made an appeal to my doctor after we found out that most of the multiple visits per week were for blood work. It looks like I'll be able to have my blood work done at Ellis Fischel, and then come to Barnes once a week or so for a while to meet with my doctors here. I don't know exact plans yet, but I love the glimmer of hope.

I apologize for the lack of updates recently. At first it was due to not having access to a laptop (I've used my husband's work laptop until now) but I was blessed by one of my former pastors who put together a laptop for me to use. I am incredibly grateful to him for his kindness and all the ways he has impacted my life over the years.

The days after a transplant become rather monotonous, which is another reason I haven't written much. It's just all a waiting game. Waiting for counts to rise...waiting for any signs of a problem. Trying to rebuild strength...eat...drink. That is mostly what life has been like. I've lost a tremendous amount of weight, so a major focus right now is on trying to consume enough protein and calories to begin to regain what was lost. Eating isn't always easy. I don't know if it is lingering effects of the chemo, drug side effects, or what, but most of the time I have to force myself to eat, and that's probably been one of the hardest parts of all this.

Thank you all for your prayers. So far the Lord has been merciful to me, and I pray I am "healed" of this disease, as much as is possible. I'll be having a bone marrow biopsy within the next few weeks and I'm anxious to know the results, though dreading the procedure.

For the basket filled with special little surprises, the CDs and books, the cards, the e-mails -- all the things you do to serve me, I thank you. Blessings, Amy

Day 13 Update

2006-11-26T09:49:00.000-06:00

This past week has been spent in a bit of a drug-induced haze. The mucositis hit me hard, and I am still using a pain pump to help control things and enable me to eat. I haven't gained any weight, but I haven't lost any, either, which is a good thing.

Dr. DiPersio (head of the transplant unit) has been making rounds while Dr. Westervelt has been on break. He seems very optimistic and I expect to be released later this week to the previously mentioned cancer housing. I would love to just go home but I will most likely have about three appointments per week for a while and the drive is about 120 miles one way, so I know it will be easiest to stay in the area.

My days have been quiet and have taken on their own routine. My counts are beginning to rise (praise the Lord!) so hopefully the mouth issues will clear shortly. Right now I am still spending most of my time trying to get food down. (Regarding counts, my WBC is at 1000 today and the neutrophils are at 600.) I am receiving Neupogen shots again to help boost the numbers. Definitely weary of those!

Gary will be one year old on Wednesday. I'll be able to see him briefly this evening, and can hardly wait. I want so badly to be home with him. I am feeling a lot stronger this time, and things like working out on the treadmill are helping with endurance, so I may actually be able to take care of most of his needs once I get home. I'm excited about that. I have been so grateful for all the childcare my family (especially sisters) have provided, but I miss being mommy.

I pray you were all able to enjoy a blessed Thanksgiving holiday with your families. I have been able to enjoy a four day weekend with my husband and have more to be thankful for this year than I could ever begin to list. Mostly I am thankful for life, and for each moment I have been given as a gift. We love you all. Thank you for your prayers, and may the Lord richly bless you all.

Day Six Update

2006-11-19T18:15:00.000-06:00

Sorry for the delay in updating my blog. Overall it has been a good week. The Dr. has been pleased with my progress so far though I am still dealing with a very sore throat and the mucositis. The mucositis is a side effect of a drug that I finished today, so hopefully that should start improving over the next few days.

I've been spending time daily either walking the halls or using the treadmill in the exercise room. My neutrophil count hasn't hit its lowest point yet, so the next few days may still be hard until my counts begin to rise again. My days have been filled mostly with trying to eat as much as possible, a slow, painful process, and just sleeping.

If all continues to progress well I should be released from the hospital to the housing provided by the American Cancer Society by the end of the month or so. The doctors will want me to stay within the St. Louis area for about the first 100 days, though they did say they will transfer me back to my doctors at Ellis Fischel as soon as possible.

There is still a lot that time will tell. For now, we continually thank you for your prayers on our behalf. I have received far too many cards to list, but do want to thank the Wassons and PHCers for blessing us. Also to Emily for the very cool pink fuzzy hat. It's all the rage. :-)

Transplant

2006-11-13T20:41:00.001-06:00

After a restless night of sleep and possibly an even more restless day of sleep, I finally remembered that this transplant meant a chance to live -- I really had nothing to lose -- lightened up and enjoyed what took all of about 20 minutes to complete. My wonderful brother needed to provide 2 million stem cells and we found out tonight he provided 9 million. They can use about 8 million to help me bounce back a little faster, the rest will be frozen. I am so thankful for all he went through for me today. He was hooked up to the pheresis machine for about 5 hours, so I definitely had the easy day.

Now begins the waiting game. My counts are at zero and I've lost weight again due to the mouth issues. Dr. Westervelt said I won't feel good for a while but they will do all they can to treat the symptoms. I've been taking advantage of the hospital's good fruit smoothies. I'm allowed fresh fruit and veggies here even though neutropenic since the food staff is trained to work with us. Everyone here has been so wonderful. I have been much encouraged.

I found the first chapter of James to be very comforting just prior to transplant, along with yesterday morning's "Morning & Evening" by Spurgeon.

I apologize that this seems so scattered. Thank you for your prayers.

T minus 2 and Counting

2006-11-11T19:10:00.000-06:00

This is Amy's mom helping her post tonight. She wanted you to know how things were going. Radiation and chemo both went fairly well for her. She does have one side effect from the chemo. Her mouth has gotten pretty sore, no mouth ulcers but more of a break down of the lining in her mouth and throat. She is able to take pain medication before she eats to try to make that easier for her. Amy orders food that is soft and easy to swallow right now. She is enjoying the smoothies that they make here. At last weight check Amy has gained weight and this is certainly a praise. She has had some fever today. It is not high but she asks that you continue to remember her in this area. She would also like to experience a good night of sleep. They have had to give her lots of fluid post chemotherapy to keep the drug from becoming toxic in her kidneys. And we all know what lots of water does to us! We try to walk a couple of laps around the halls as she feels able to do so. With her mask on, we feel fairly safe walking on 5900. Her blood counts from yesterday show that she is neutropenic now. We need to be careful that she is not knowingly exposed to illnesses. She is grateful to the Lord for all the help He has given to her.

Amy's brother Daniel is doing a great job getting his growth factor shots - Neupogen. We commented to the nurse today that we hope they only increase his bone marrow production and not his height. Daniel is about 6 foot 4 inches tall at 17 years old. He has not had any noticeable side effects from the shots. He will receive one more shot tomorrow morning and then the pheresis will occur on Monday, November 13 beginning around 8 a.m., Lord willing. The collection should take approximately 5 hours. The collection of stem cells will be counted. They need around 2.5 million cells to transplant to Amy. It will also undergo other lab tests and then it will be transplanted into her sometime Monday evening. If the count of stem cells is not high enough Daniel will need to return on Tuesday to give more. It is truly amazing what God has allowed us to understand so that many people with blood cancers and other blood disorders can be helped. I have met other family members here on the floor and so many of them have good reports about their loved ones. That is good for me to hear.

Amy is so thankful to those who have sent cards to her and have contacted her in other ways. Thanks also to the Rodriguez, Quinones, and Ymker families for their gifts. She also wants to thank her family for all the help they have given to her -- to Aunt Linda and Uncle Ron for helping Daniel get to his appointments and letting him stay at their house during these days, to Emma, Christianne, and Lizzy for helping with Gary, and to Daddy for letting Mom spend so much time with her. She loves you all. Thanks to you all for your continued prayers for Amy and Daniel. We will keep you posted.

Until later,
Anita, Amy's mom

T minus 5 and counting

2006-11-08T14:33:00.000-06:00

I just finished my last round of radiation. I haven't had any side effects so far other than maybe a bit of a tan, so praise God. I'm very, very grateful that I haven't been so sick and have been able to eat. My main complaint at the moment is a pulled muscle in my side. A visit to the chiropractor indicated a rib out of place in my back, but he said the muscle was pulled in front and that would just take time to heal. Thankfully I have access to pain killers and muscle relaxers.

I'll start chemo tomorrow. Two days of two hour long treatments. The drug is Cytoxin. I haven't looked it up but I think it has the potential to be pretty nasty so I would appreciate continued prayers that side effects would be mild.

Thank you all for your love and support. Just in case you didn't notice, I did put my Barnes address on the sidebar. It's quite lengthy, but that should get a note here if you were wanting to send one.

Oh, oh, and one more praise. I have a room with a view! After spending 5 weeks approx. at MU staring at a brick wall, this was an answer to prayer, so I wanted to be sure to share it with you. (The praise...sorry I can't a pic at the moment.) I brought in pictures and stuff from home, and my room is quite comfortable. So far being here has been a great experience. Wish I could have brought my favorite nurses from MU along, though. :-)

Blessings,
Amy

T minus 7 and counting...

2006-11-06T23:07:00.000-06:00

My radiation was bumped up a day, so I'm actually 1/3 of the way through the process. I'll have two more treatments tomorrow, and then again on Wednesday. Thursday and Friday will be chemo, the weekend will be rest, and then I'll have my transplant, or "Day Zero" as they call it, on Monday, Lord willing. Today went much better than I expected. Radiation took about 15 minutes on each side, and I was able to listen to music so it was relatively comfortable. The positioning made my back hurt -- that's my only complaint. So far the anti-nausea drugs have been doing their job, which is a huge praise because I was really sick over the weekend and dropped all the weight I had put on so far. I was able to go home on Thursday evening, but began running fevers and feeling really sick by Friday evening and ended up back in the hospital last night (Sunday). Right now I'm feeling o.k. Much more at peace about everything than I had been in quite a while. I have access to an exercise room and the halls are kept relatively free of people so I plan to do a lot more walking and exercising this time to help regain some strength. At least for now while I'm able.

Thank you all so much for your prayers. Please pray especially for my husband. It's hard for him to be far away and unable to see me except on the weekends for the most part. Also, for my family as they once again share my mom. She's spending this week here at the hospital with me. I am very grateful for all of the sacrifices they have made on my behalf. Also, for my brother Daniel. He'll begin the Neupogen shots on Thursday.

I'll leave this rather short as I have to be up early for radiation in the morning. I know I've lost track over the past week or so as I've been ill with the high fevers, but thanks to those who sent notes of encouragement and even flowers. You're all such a blessing.

Oh, one last thing. Now that I have started the transplant process I am unable to receive flowers, plants, etc. I think silk are o.k. but I'm not 100% sure on that. My room is super clean with HEPA filters and they take a ton of precautions. We are also asking that people refrain from visiting from this point on. If you'd like to stop by and talk with my mom or Brandon, arrangements can be made to do so, but I won't be able to have visitors in my room. We love you all, but the ultimate goal is to make it through this, and something like the flu or pneumonia at this point could prove deadly. I know you all understand, and thank you.

Many blessings, Amy

Amy Wilhoite Medical Fund

2006-10-31T19:10:00.000-06:00

There was a comment on my last post from some family members in AZ regarding the Amy Wilhoite Medical Fund. As we were getting people questioning the legitimacy, I removed the post until I could adequately address the fund. The Amy Wilhoite Medical Fund is legitimate. Since we have that out of the way, let me actually address the fund.

There has been a medical fund set up for Amy, through Bank of America. Originally, the account was set up to have a single place for donated funds to go from fundraisers that were being organized and held in both AZ and MO. By asking for the "Amy Wilhoite Medical Fund," anyone can make donations at their local Bank of America. Regarding what the insurance company is paying for – whether the transplant or the prescriptions we'll need afterwards to maintain a quality of life for Amy - is still unknown. As well as the immune building treatments, which aren't covered by insurance that we would like to have Amy treated with... We don't know what our future medical financial need will be, but we do estimate it to be high.

Amy & I refrained from posting any information about her fund on the blog as we wanted the blog to be an information source for friends and family, stating how Amy is progressing through her battle with this disease -- as well as a place for prayer and encouragement -- not as a place for the solicitation of money to help with medical expenses. We had created the fund for the use of fundraising events as it was never our intention to ask anyone for money, rather to let people give if they felt called to. We have received several gifts and donations from people and churches without asking and we never wanted to do so now. So, please, don't feel pressured to give in the slightest bit and only do so if you feel the Lord has put it in your heart to give. If you have any questions about the fund, you can call 480-538-4901 in AZ, 573-876-6223 in MO, or ask about it at your local Bank of America.

[Edited for clarity and to also add that Amy & I are very appreciative of the fundraisers and those organizing and hosting them. And also wanted to send quick thank you to the members of HSA for the package of cards sent to Amy -- she was very encouraged by the thought and the kind words]

Brandon's View of Amy's Journey

2006-10-29T19:02:00.000-06:00

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).

Transplant...

2006-10-22T11:48:00.000-05:00

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

Going home

2006-10-19T11:34:00.000-05:00

I'm going home today. The doctors said I'll be discharged by noon. Not sure if that is going to happen, but I'm trying to be patient.

I had surgery on Tuesday and have my new catheter placed. It has three lumens this time and is on the left side of my chest. They weren't able to place it in the same place as the other because of scar tissue. I'm still really sore from it, but they've had me off the IV since yesterday so I've just been taking Tylenol.

I have an appointment with Barnes tomorrow morning and will see Dr. Westervelt in the afternoon. I don't plan on being admitted tomorrow. I'm hoping for a weekend at home. I want to spend time with my family and try to put on some weight. Last I was weighed I had dropped to the mid-90s. I lost a lot this time and look pretty bad. Between my arms and bony body I think I look like a heroin addict. Thankfully I'm just sick.

Thank you for your prayers. Thanks also to Meam, Rachel, Anne, Aunt Susie and Kathie for the cards of encouragement.

Counts rising, surgery tomorrow

2006-10-15T18:32:00.000-05:00

My counts are finally starting to come up. Today my white count was at 900. Still neutropenic, but we're getting there. Please pray that they will continue to rise.

I will most likely be in OR tomorrow to have my Hickman replaced. They are replacing it with something similar, specified by Barnes. I'm a little nervous about it even though last time went fine. I am very anxious to have it replaced, though. My arms are really beat up from daily blood draws and the IVs I have in currently have been very painful. The meds I'm on are hard on the veins and sometimes they just burn.

I'll be released from MU this week into the care of Barnes. Not exacty sure what day this will happen. I'll keep you updated as much as possible.

Thanks to Rachel D. for the book. Thanks also to Rachel D., Dixie, Meam, Rowena, Peggy, Mara, Aunt Kristy & Uncle Jim, Anne, Colleen, Rachel E., Perdews, and Grandpa and Linda for the cards.

Bone Marrow Biopsy #5 Update

2006-10-09T19:42:00.000-05:00

I'm fever free for a while so I thought I would take this opportunity to update. The results of my bone marrow biopsy looked good. No sign of leukemic blasts. We are still waiting for my counts to rise and then I'll have another biopsy. That is probably my biggest prayer request right now, that my counts would rise and the fevers would break and I could start coming off all the drugs. I've been using Ativan to help me sleep a lot lately. It seems to be the best way to deal with everything.

I'm still struggling with my appetite, nausea and vomiting. I've definitely lost weight but I think the Lord is preserving my body in that most of my nutritional levels are looking o.k. with daily blood draws. I am having trouble with potassium. It has been very low due to some of the drugs I'm on. It's hard to take through IV and I am not tolerating it very well otherwise.

They took my Hickman out in the middle of the night (early Friday morning). I had cultures drawn today. If those come back clean I'll be getting another Hickman or whatever Barnes prefers. The doctors are consulting with them. I'm very anxious to have it back as I really don't have any veins left for morning blood draws. And I think the IVs are very uncomfortable.

Thanks to Pastor and Mrs. Preusch for the encouragement today. Thank you also to Grandpa and Grandma O, Lizzie, Meam, Kim N, Calzones, and Applegates for the cards.

Biopsy #5 and other news

2006-10-05T20:54:00.000-05:00

This is Anita, Amy's mom, posting for her. Today was biopsy day for Amy. Overall, it was the best biopsy yet. The doctors have found a good mixture of drugs to help her. She mainly felt pressure and poking and very minimal pain. Her new hematologist, Dr. Kingslee, did a great job. He has shown all of us so much kindness. We are grateful that he came in yesterday and prayed with Amy and then also prayed with her today before he did the biopsy. He will probably know preliminary results Friday afternoon. Otherwise we should know results on Monday.

Amy is still spiking fevers throughout most days. We had news this afternoon that blood cultures are positive for staph infection in her Hickman port line. This is not good news at all. It means they will have to remove the port from her, treat her with powerful antibiotics, and re-insert a port after the infection is gone. This is definitely a matter of prayer for God's protection over her body. She is also on an anti-fungal called amphotericin-B, nicknamed ampho-terrible. After about the first 1 or 2 hours of infusion she reacts with tremors that only seem to stop after they give her several doses of demerol. The infectious disease doctors say that she must have this drug since she is still neutropenic. Her counts remain low and they are giving her red blood tonight and gave her platelets earlier in the day.

We have heard from Barnes Hospital in St. Louis today. They report to us that Amy has 4 siblings who are perfect matches for a bone marrow transplant. This information has been reported to the physicians and we should hear from them as to which one they feel will be the best match for her. Until then, we are not saying who the blessed four are. Stay tuned. . . Please remember to pray for the little girl that Amy has mentioned in the past, Baby Livi, who has no siblings and needs to find a perfect match for her future BMT. We are grateful to the Lord for His provisions for Amy and know that His hand has provided. "All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord unto me!!"

Thank you as always for praying for Amy and all of us.

Quick Update

2006-10-04T23:27:00.000-05:00

[From Brandon] Amy's got her bone marrow biopsy scheduled for tomorrow morning at 11:00. Prayer would be appreciated. The results of this biopsy have many many decisions hanging on them.

Same old...

2006-09-29T21:19:00.000-05:00

Not a whole lot of news to write about. My counts are still down, and I'm still feeling bad. I'm weary, we're all weary. Tonight I can't stop crying, but He has my tears in His bottle, right? I think it must be a very large one.

I'll be having the bone marrow biopsy sometime next week. They haven't told me what day yet, but that's the decision. We haven't heard yet about a donor match for my bone marrow transplant. They originally told us it took a week to get results back but when we called this week they said it takes two weeks. I get tired of miscommunication, it seems there is a lot of it. Bottom line, they told Brandon to call back October 3rd. Hopefully we will have an answer then. I am so blessed to have such a strong chance of a sibling match, but it is hard in the dark hours to wonder if that 10% won't win out in the long run, and then what if? I have to keep coming back to God's sovereignty. I know He's got it. I have to know that. It's the only thing that gets me through these days.

Gary is 10 months old today. I'm so thankful for him. I got to see him for a few minutes today.

Just FYI, I can receive e-mail, but not send any from the hospital for some reason. So if you've written me and are wondering about a reply, that's the deal. We're working on it, hopefully it will be working soon.

Thanks to Meam, Dixie, Aunt Susie & family for the cards.

Update

2006-09-26T10:14:00.000-05:00

I wanted to write a quick update to let everyone know I didn't have the bone marrow biopsy yesterday. The doctors have decided to wait until my counts begin to rise again, that way I should only have to have one instead of two. I'm content with that. It could possibly be by the end of the week, but I don't know a day or time yet. Currently my counts are still down and I'm still neutropenic. I was told it can take 5-6 weeks for the blood to rebuild after the start of chemo so it may be another week or so before they begin to rise.

I'm still in the hospital. I started with a new team of doctors on Monday (now working with Dr. Doll as my oncologist) and he said I'm not going anywhere until my counts start coming up, so I guess I'm here for a while still. I've been running fevers and having some nausea and upset stomach, plus the rash is still very, very present. Overall I haven't been feeling very good but they have meds to help with a lot and I've taken advantage of them. They're doing blood cultures just about everytime I spike a fever, and those get really old. Most are from my Hickman line but the ones from my arm are rough.

Thanks to Meam, Rowena, and Abby for the cards, and thanks to Alea and Grandma Edie for the packages. (Yes, Alea, it finally came!)

Spurgeon for the Day

2006-09-23T21:19:00.000-05:00

I love C.H. Spurgeon. It seems he never fails to provide wisdom for whatever I am struggling with on any particular day. This is today's entry from Faith's Checkbook:
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For, lo, I will command, and I will sift the house of Israel among all sections, like as corn is sifted in a sieve, yet shall not the least grain fall upon the earth. (Amos 9:9)

The sifting process is going on still. Wherever we go, we are still being winnowed and sifted. In all countries God's people are being tried "like as corn is sifted in a sieve." Sometimes the devil holds the sieve and tosses us up and down at a great rate, with the earnest desire to get rid of us forever. Unbelief is not slow to agitate our heart and mind with its restless fears. The world lends a willing hand at the same process and shakes us to the right and to the left with great vigor. Worst of all, the church, so largely apostate as it is, comes in to give a more furious force to the sifting process.

Well, well! Let it go on. Thus is the chaff severed from the wheat. Thus is the wheat delivered from dust and chaff. And how great is the mercy which comes to us in the text, "Yet shall not the least grain fall upon the earth"! All shall be preserved that is good, true, gracious. Not one of the least of believers lose anything worth calling a loss. We shall be so kept in the sifting that it shall be a real gain to us through Christ Jesus.
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I especially like the line, "Not one of the least of believers lose anything worth calling a loss." It is easy in the midst of all of this to pile up my "losses" -- most specifically in my mind, time as a wife and mother. So this was a good check for me today.

One day Brandon and I were talking and I got all excited when I realized if the Lord does choose to take me home soon (and ultimately, whenever), I may get to see my grandma again, and meet the siblings my mom miscarried, and meet Brandon's dad who died when Brandon was young, and then I thought of people like Spurgeon and the giants of the faith, and Paul! And Jesus. It's actually really exciting. I know I don't understand exactly how heaven works, but I know it will be glory, and having that to look forward to is really all that makes this life worthwhile.

Blessings all,
Amy

Reinduction: Round Two Update

2006-09-23T12:30:00.000-05:00

Still stuck in the hospital. I may be able to go home tomorrow...I just have to be fever free for a while. I did manage to get them to stop the Vancomycin (?) which was causing "Red Man Syndrome" and in my opinion, the fevers as well, so I expect the next day to go better. I ran a fever with the "bad" bag of blood the other day and they've had me on antibiotics ever since. As with my original stay in the hospital, the fevers seem to coincide with the antibiotics and I'd just prefer they pull them all. I'm still on one, but at least it's an improvement. I'm still neutropenic and my platelets are low today, so I'll get a unit of those sometime this afternoon.

The dermatologist's biopsy verified that I do have Sweet's Syndrome on my hands. The rash from the Vanc has irritated it a lot, and I'm quite itchy, but overall I think it's getting better. They've been giving me a smaller dose of Benadryl, which I seem to be able to handle o.k. and I guess it is helping somewhat.

Appetite is still deplorable and the food even worse in my opinion. The nutritionists have been trying their best, but I threw everything up the first six weeks I was here and have no interest in any of it now. They did find an expanded menu for me which helps a little. At least it's not the same old one-week rotation from July on...it's just so hard to not feel like eating anything. Last night I thought a salad sounded good, but I'm still under the neutropenic restrictions.

I'm having another bone marrow biopsy done on Monday. This will hopefully show that we have achieved a second remission, and I'm ready to move on to transplant. Please pray for good results. I told the doctors I don't want to feel it this time. Last time I did it without pain meds (I've basically done it without pain meds 3 out of 4 times) and I cannot, cannot handle it anymore. I'm too emotionally wiped to bear the torture. I don't know what they'll use since I don't react well to the normal options, but they'll either have to find something or it's just not happening.

I'm fighting discouragement. Please continue to pray for us. The journey is just so long and hard and I am so weary. I haven't seen my baby in several days it seems and I just want to go home.

Thanks Rachel for the "Diva" package, it really brightened my day.

Reinduction: Round Two

2006-09-20T16:12:00.000-05:00

I made it through the weekend at home and came in Tuesday morning to begin the second round of chemo. They are using Citarabine and Etoposide this time, and it seems to be a little easier on the system.

The skin rash I mentioned developing over the weekend is still very much a part of me. The dermatologists did a biopsy today, and they think it is probably Sweet's Syndrome. It looks like an acid burn on my hands, to be honest, and feels about like one, too. They should have a diagnosis by tomorrow and be able to treat appropriately from there. I'm looking forward to it.

Other side effects have been better than last week overall. My appetite is still lacking, but I did manage to keep dinner and breakfast down last night and today. I didn't eat lunch, but dinner is here and looks o.k. I've been sticking to baked potatoes. My counts were really low today (platelets around 17, iron around 7, white count is .3 -- I've been neutropenic since yesterday at least) so that made it transfusion day. The platelets went in o.k., but I reacted to the first bag of blood and before I knew it I was receiving a chest x-ray, blood draws, and an antibiotic since my reaction involved a fever. The fever is now gone, and I'm hoping the antibiotics can go soon as well. I still need to receive two units of blood at some point but they're all talking about it right now to see what they want to do. I thought since I am going to be having a transplant that they would be careful to only give me my type, and the unit today was not my type, so they may be trying to get some in. I don't feel good when the fevers hit, and ended up just going downhill and held my teddy bear while they poked and prodded, and cried for Alivia, the little girl we know of with ALL, and how she has to have all of the same stuff done to her and she doesn't even know why, and wants to tell them to just all go away and leave her alone just as much as I do. My heart breaks for her, and for all the other little ones who are suffering from this disease. Somedays it just seems like too much to bear.

All of my siblings had blood drawn yesterday and sent to Barnes in STL for testing. We should know the results next week. For now it's still just a day at a time. I find myself wishing they could just knock you out and wake you up when it's all over, but I suppose this is the race, isn't it?

Thanks to Pastor and Mrs. Preusch for your encouragement yesterday.

"Master, carest thou not that we perish? And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm. And he said unto them, Why are ye so fearful? how is it that ye have no faith? And they feared exceedingly, and said one to another, What manner of man is this, that even the wind and the sea obey him?" - Mark 4:38b-41

The weekend in between

2006-09-17T14:25:00.000-05:00

"Though our outer nature is wasting away, our inner nature is being renewed day by day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal." -- 2 Cor. 4:16-18

Our Caregroup leader in Arizona shared that verse with us before I went in for treatment, and it is heavy on my soul today. It is so hard in the midst of affliction to remember that it is momentary, and perhaps even slight, even when it feels that it is consuming every aspect of your body. This round of chemo has been hell on earth for me. The doctor released me from the hospital on Friday as planned with about a 103 degree fever and flu-like symptoms. He did give me some meds to help with side effects, and those have allowed some blessed sleep. I'm still not eating much, and haven't since I went in on Tuesday. I am dreading a return to the hospital on Tuesday for more treatment, and praying constantly that this next drug will be easier on the system. The doctor reminded me that I had toxins running through me when I was feeling so horrible. It is so hard to accept the fact that I have to have the toxins to live.

I was released with the fever because the doctor felt it was entirely chemo induced and would go away by evening. It did, and I don't have to go back until Tuesday unless the fever comes back. So far I've been o.k. in that regard. I just basically feel like I have a sinus infection, influenza, and the stomach flu all rolled into one, plus a really bad skin rash. The valley is really dark right now. Please pray for us.

Reinduction

2006-09-14T20:02:00.000-05:00

The last few days have been really hard. I've been running a fever along with a migraine, and I've felt like I've had the flu. My blood pressure was extremely low all day yesterday as well. I've been sleeping a lot. Brandon says it is a side effect of the medicine. They gave me oxycotin (?) to help with the headache tonight so for the first time I'm feeling halfway decent. This round has just been brutal. I am done with the blue stuff -- at my personal lifetime limit, and happy enough to never see it again. I'll have a different drug next week along with the Cytarabine.

My prayer request tonight is that the fever will stay away and I'll be allowed to go home after my chemo finishes up tomorrow morning. I haven't been eating at all, and I think I will do much better at home. The doctors think the fever has been due to the chemo drugs, though they did take cultures today just in case. I also received a blood transfusion today. My iron count was down in the 7s, so I'm sure that has something to do with why I'm feeling better tonight.

Barnes has kits in the mail for my siblings to be tested for a bone marrow donor match. The doctors say I have about a 90% chance of having a sibling match. We should know within two weeks.

Thank you all for your prayers.

Deja vu

2006-09-12T21:34:00.000-05:00

Here we are again at the MU hospital in room 27 on the 5th floor. I was rather surprised to find that the only open room on the floor this morning was my old one. We came in around 10:30 and the reinduction chemo was started by about 1:30. I haven't spoken with the oncologist yet (Dr. Anderson is attending this month) but the plan is to use Cytarabine, Etoposide and Mitoxantrone. I'll have three days of both the Cytarabine and Mitoxantrone, and the Etoposide for a day or two. The overall plan is three days of chemo, go home for a few days, and then come back on day eight, which will be the 19th, for another round. Not quite sure what happens after that, so I'll leave that for now. The side effects are very similar to last time, so we'll see how hard those hit. The only one I've noticed so far is blue urine. :-) The Mitoxantrone is navy blue, and effects both urine and the whites of the eyes.

We're still in the early communication stages with Barnes. Today we played phone tag with them regarding the preliminary steps towards getting my siblings tested. Several people have asked me to let them know if I don't have a match, so they can be tested. If it's something you're considering, I would encourage you to pray about registering anyway. There are so many people who desperately need a transplant and have to wait months or even years for their donor match. Right now I know of a 21 year old and an 18 month old who may be in need of donors in the near future. There is always someone, and you can make a difference in a life -- save a life -- even if you don't know the person.

I'll keep this short and write more in the coming days. Thank you, again, for all of your prayers and support.

Relapse

2006-09-08T15:38:00.000-05:00

A quick search on Google yielded the following medical definition:

Relapse: The return of signs and symptoms of a disease after a patient has enjoyed a remission.

I'm not entirely sure how much I've been able to enjoy this brief remission, but just being home has been a huge blessing. Every minute with my baby becomes more valuable in my sight with every passing day.

Preliminary results from yesterday's oh-so-painful biopsy resulted in a phone call from my doctor today, telling me that I have relapsed. What a way to ruin a perfectly good Friday. The leukemic blasts are back at about 20%. I knew, I wondered if I was sick again before Tuesday's appointment but when I saw my blood work I knew. Yet still...hearing it on the phone...there just aren't words. A relapse this quickly? "Not good" is an understatement.

I'll be going back into the University Hospital on Tuesday to begin reinduction therapy. They will be using different chemo drugs this time but the side effects will be similar to the original induction. The doctor said to expect to be there for "a while." In the meantime, my siblings will be typed for a bone marrow donor match. As I've said before, each one has a 1 in 4 chance of being a match, and I have eight siblings, so statistically the chances are good. Our prayer is for a sibling match because that lowers the risk of graft versus host disease. GVHD can be really horrible to the point of fatal. Bone marrow transplants are not the "fix all" we tend to think they are -- this is honestly a last resort -- I have a transplant or I die, no options. The results may be wonderful, but it is also a very real fact that a lot of people don't survive, and a lot who do have a very poor quality of life due to GVHD, radiation, etc.

Once I am in second remission, I will be going to Barnes Jewish Christian Hospital in St. Louis for the allogenic bone marrow transplant. I don't know how all of that will play out yet, so I won't waste time and words speculating.

Psalm 118
1 Give thanks to the LORD, for he is good;
his love endures forever.

5 In my anguish I cried to the LORD,
and he answered by setting me free.

6 The LORD is with me; I will not be afraid.
What can man do to me?

7 The LORD is with me; he is my helper.
I will look in triumph on my enemies.

8 It is better to take refuge in the LORD
than to trust in man.

13 I was pushed back and about to fall,
but the LORD helped me.

14 The LORD is my strength and my song;
he has become my salvation.

15 Shouts of joy and victory
resound in the tents of the righteous:
"The LORD's right hand has done mighty things!

16 The LORD's right hand is lifted high;
the LORD's right hand has done mighty things!"

17 I WILL NOT DIE, BUT LIVE,
and will proclaim what the LORD has done.

(Thanks to Emily B. for sending this to me yesterday.)

Ellis Fischel Appointment Results

2006-09-05T20:56:00.000-05:00

Today was my appointment with Dr. Perry. I also met with Dr. Medlin. They both agreed that I am in remission, or at least that I was at the time of the last biopsy. We discussed my consolidation treatments and also did blood work. Dr. Perry was not going to do another bone marrow biopsy unless my blood work indicated a need for one, and it did, so I will be going in (outpatient) on Thursday at 1 p.m. Dr. Medlin will do the procedure. At this point I'm not going to speculate too much on the biopsy results, which should be back by next Tuesday. Assuming I am still in remission we will proceed with the consolidation treatments pretty much immediately. They will be 1-3-5 (as in Monday, Wednesday, Friday, or every other day for three days depending on when I start) and inpatient, so I can expect to be in the hospital for 5 days, once a month, for the next four months. If I begin to run a fever after returning home following each treatment, I'll return to the hospital for probably about a week until my counts are back up. I would like to begin as soon as possible so perhaps I can be done by Christmas.

On a happy note, I'm still feeling good and enjoying time with my family. I've been caring for Gary on my own for a few weeks now, and he's definitely become quite attached to mommy again, and I'm quite attached to him. He is certainly our greatest joy and blessing during this time.

Thanks so much for your prayers.

Barnes appointment & upcoming treatment plan

2006-08-26T13:51:00.000-05:00

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!