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

Fevers

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

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

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...

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

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

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?

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...

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.