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.