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