Same old...

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

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

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

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

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

Update

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

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

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

Spurgeon for the Day

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

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

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

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

Blessings all,
Amy

Reinduction: Round Two Update

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

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

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

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

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

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

Reinduction: Round Two

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

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

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

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

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

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

The weekend in between

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

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

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

Reinduction

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

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

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

Thank you all for your prayers.

Deja vu

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

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

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

Relapse

A quick search on Google yielded the following medical definition:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Ellis Fischel Appointment Results

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

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

Thanks so much for your prayers.