Remembering...

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...

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

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...

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...

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...

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?

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

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

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

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

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

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

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

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

"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

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

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

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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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...

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