Saturday, December 30, 2006

Happy New Year

December 28th:

I hope everyone is enjoying the holiday season with their family. We had a nice Christmas. The bone marrow biopsy went o.k. Not the best, not the worst. I have had a lot of lingering pain, which I am still dealing with, but overall I think this time was better than the last. I've been seeing a chiropractor and she's been able to fix the rib problem I had, eliminating yet another source of pain.

The medicine my doctor prescribed for the neuropathy caused severe swelling in my feet, ankles and calves, to the point that walking was excruciating. I quit taking it after two days. It seems to have, at least temporarily, helped with the neuropathy, for which I am thankful.

I find out the results of last week's bone marrow biopsy tomorrow at my weekly appointment. I'll let you know. This one doesn't tell us a whole lot, but it tells enough that I'm nervous about the results. Trying to learn not to be. I know it's a faith issue I need to deal with because this is how it's going to be the rest of my life, and I can't spend it on pins and needles waiting for the next test result. I received the following advice on a Christmas card from one of my doctors:

Life is good -- but regrets can drive you mad
Walk blindly into the light and reach out for His hand
Don't ask any questions and don't try to understand
Open up your mind and then open up your heart
Be happy and never hate
Don't waste time, there is something more that you've been handed

It was such a good reminder to me. Life IS a gift -- for all of us. Nobody knows their days. But for me? There is something more I've been handed. Thousands of people went before me and died going through clinical trials while they figured out what the best treatment options were, and thousands more are still dying in those same trials -- always and ever seeking a cure for this horrible disease. I go to the cancer hospital and see so many sick, depressed, horrible looking people that I didn't know really existed before I got sick. Were my eyes just blind to it? I don't know. Did I just look away like everyone else does when I'm out in public without a wig, wearing a surgical mask? I wish for just one day that all of those with cancer would just be brave and go out bald and make everyone aware of how HUGE of a disease this has become. I think you would all be shocked. Maybe then more children would grow up to be oncologists, maybe then more people would register to be stem cell/bone marrow donors. I don't the meantime, I know I pray for a cure, for myself, and for all the others I have come to know who are suffering, some as young as 6 months.

As a side note, as it is nearing the end of the year, and some of you may be looking for a good charity for tax deduction purposes, consider the American Leukemia and Lymphoma Society (, or the American Cancer Society ( They both do a lot of good things for those of us who are ill.

Update: December 30th

I went to the doctor yesterday and got the results from my biopsy. They had warned me that at 30 days they wouldn't be able to tell much because most of the cells would still be immature (one of my doctors described it as a bunch of babies and you don't know if they're going to grow up to be juvenile delinquents (leukemic) or good cells. They had also warned me that it's not unusual at this point to see some leukemic cells. Well, I had 40% mature cells and in capitol letters on the report, "NO EVIDENCE OF ACUTE LEUKEMIA." This technically means I am finally in remission and I asked the nurse practitioner if this was good and I should be happy and she said yes, it's a wonderful report for 30 days. I'll have another biopsy at 100 days, so sometime in February, and we want that to be clean as well. Ultimately they want me to make it a year from transplant (11/13) without a relapse because that greatly lowers the overall risk of relapse. If I make it five years without a relapse, I'll be considered "cured."

I also found out that the extreme nausea and vomiting I struggled with last week is most likely a mild form of GVHD. They had warned me about Daniel's immune system attacking my gut, but placed more emphasis on things like diarrhea and didn't mention vomiting, so it didn't come to mind. I've been doing better the last few days and have a prescription written to take if it gets bad again. It's a steroid, so I would prefer to avoid it if possible. Mild GVHD is a good thing, so I'm not complaining too much. I'm so used to throwing up it doesn't really phase me anymore. It just bothers me because it interferes with weight gain. I was down a few pounds this week but I also lost all the swelling in my legs and feet, and I'm wondering if that had more to do with it than anything else. Otherwise my appetite is good, for which I am thankful.

I'll put an end to this lengthy post and bid you all a Happy New Year! I'm quite content to say goodbye to 2006 and pray for a better 2007.

Love you all,

Thursday, December 14, 2006

General Update

I thought I should write a general update so you all know what life is like right now. I'm down to one doctor visit a week -- at Barnes in St. Louis. Much better than the original 2-3 appointments for blood draws that I originally thought I'd have. That could change, but I'm happy with it for now. I have an appointment tomorrow and I am curious to find out what my counts are because my energy level is really low. I'm hoping I won't need a blood transfusion, but that's not uncommon at this point and is a distinct possibility.

Originally they wanted to do the bone marrow biopsy tomorrow but they didn't have an opening, so it is scheduled for next Friday, which I believe is the 22nd. We discussed various options regarding pain medication/sedation and I expect this one to go much better. Hopefully I won't have the swelling and pain for days afterwards. I just want to have a very special Christmas with my family this year.

Two of my sisters are still here assisting me as my strength has been slow to return. I'm so thankful for their willingness to serve me and sometimes it seems be my personal maids. Mom pointed out that it's only been a month since I was basically dead -- all my counts at zero, and to not be hard on myself. One of my old friends wrote on the blog to "Rest in the Lord, and trust in His strength." I needed to hear that today, thank you.

Other than the overall weakness, my only other struggle has been with side effects from either the radiation, chemo, or both. I've developed what I think is neuropathy, mostly in my feet, and for some reason mostly at night. The pain is bad enough to keep me from sleeping, though enough pain meds eventually knock me out. I'll be talking to the doctor about it tomorrow. Thankfully from what I've read this is a less common side effect that should eventually go away. I've also lost most of my eye brows and eye lashes, and the hair on my head is still falling out. I had about 3/4" growth prior to the transplant but we had to shave it off while I was at Barnes. I think the chemo they gave me was some rough stuff. I'm anxious for the growth to return. The radiation also leaves me with very, very dry skin that also feels like a sunburn, and even lukewarm water feels hot to the touch. These are little things in comparison to the overall picture, but as I said, I just wanted to let you know what life is like right now.


Tuesday, December 05, 2006

...and this little piggy went all the way home

I was just sitting here thinking of a hymn and decided to look up the words. I didn't know all of the verses, but found it so perfectly appropriate for how I feel today that I thought I'd just post the whole thing.

"Praise to the Lord, the Almighty"
by Joachim Neander, 1650-1680
Translated by Catherine Winkworth, 1829-1878

1. Praise to the Lord, the Almighty, the King of creation!
O my soul, praise Him, for He is Thy Health and Salvation!
Join the full throng:
Wake, harp and psalter and song;
Sound forth in glad adoration!

2. Praise to the Lord, who o'er all things so wondrously reigneth,
Who, as on wings of an eagle, uplifteth, sustaineth.
Hast thou not seen
How thy desires all have been
Granted in what He ordaineth?

3. Praise to the Lord, who hath fearfully, wondrously, made thee;
Health hath vouchsafed and, when heedlessly falling, hath stayed thee.
What need or grief
Ever hath failed of relief?--
Wings of His mercy did shade thee.

4. Praise to the Lord, who doth prosper thy work and defend thee,
Who from the heavens the streams of His mercy doth send thee.
Ponder anew
What the Almighty can do,
Who with His love doth befriend thee.

5. Praise to the Lord! Oh, let all that is in me adore Him!
All that hath life and breath, come now with praises before Him!
Let the Amen
Sound from His people again;
Gladly for aye we adore Him.

Anyway, today is just a quick update on where things stand. I am home now, and lovin' it. Gary has grown up SO much. It's been great to spend time with him again. My sisters are still here helping because I'm under a lot of restrictions. I can't clean, for one thing, which is really frustrating. Apparently dust is a really bad thing. I have a special industrial strength mask I have to wear whenever I'm out, or around dust, so anyway, they will probably still be here helping me for a while even though I feel stronger everyday. I am still weak and tire easily, but my energy level is night and day compared to other returns from the hospital.

I'll be doing my bloodwork tomorrow at Ellis Fischel, as originally planned, and then I have an apppointment at Barnes on Friday. We'll probably be at Barnes once a week for a while, just so they can keep a close eye on things like signs of GVHD. We can handle that though. It's definitely worth it to be home. Otherwise life will be rather confined for a while as my immune system builds. I have to be especially careful due to cold/flu season, so I won't be out and about much at all. Even a slight fever means a return to the hospital, and I am praying that won't happen.

Please just continue to pray for strength and health, and that GVHD won't be a problem. A little bit of it is an o.k. thing, but our prayer is that the Lord will protect from the serious stuff. Also, I will most likely have a bone marrow biopsy done next week. I know I mentioned it once, but I am struggling with anxiety over going through the procedure yet again, even though the results are so important to know. I wish my brain could forget the pain, but alas...I remember all too well.

I'm thankful for all of you -- I was thinking today about all of the encouragement you have given, and the blessing of some amazing doctors and nurses that the Lord has allowed me to work with. Truly, I feel most blessed.

Monday, December 04, 2006


I think I will be going home today, and by home, I mean home. I'm very happy about this. We made an appeal to my doctor after we found out that most of the multiple visits per week were for blood work. It looks like I'll be able to have my blood work done at Ellis Fischel, and then come to Barnes once a week or so for a while to meet with my doctors here. I don't know exact plans yet, but I love the glimmer of hope.

I apologize for the lack of updates recently. At first it was due to not having access to a laptop (I've used my husband's work laptop until now) but I was blessed by one of my former pastors who put together a laptop for me to use. I am incredibly grateful to him for his kindness and all the ways he has impacted my life over the years.

The days after a transplant become rather monotonous, which is another reason I haven't written much. It's just all a waiting game. Waiting for counts to rise...waiting for any signs of a problem. Trying to rebuild That is mostly what life has been like. I've lost a tremendous amount of weight, so a major focus right now is on trying to consume enough protein and calories to begin to regain what was lost. Eating isn't always easy. I don't know if it is lingering effects of the chemo, drug side effects, or what, but most of the time I have to force myself to eat, and that's probably been one of the hardest parts of all this.

Thank you all for your prayers. So far the Lord has been merciful to me, and I pray I am "healed" of this disease, as much as is possible. I'll be having a bone marrow biopsy within the next few weeks and I'm anxious to know the results, though dreading the procedure.

For the basket filled with special little surprises, the CDs and books, the cards, the e-mails -- all the things you do to serve me, I thank you. Blessings, Amy

Sunday, November 26, 2006

Day 13 Update

This past week has been spent in a bit of a drug-induced haze. The mucositis hit me hard, and I am still using a pain pump to help control things and enable me to eat. I haven't gained any weight, but I haven't lost any, either, which is a good thing.

Dr. DiPersio (head of the transplant unit) has been making rounds while Dr. Westervelt has been on break. He seems very optimistic and I expect to be released later this week to the previously mentioned cancer housing. I would love to just go home but I will most likely have about three appointments per week for a while and the drive is about 120 miles one way, so I know it will be easiest to stay in the area.

My days have been quiet and have taken on their own routine. My counts are beginning to rise (praise the Lord!) so hopefully the mouth issues will clear shortly. Right now I am still spending most of my time trying to get food down. (Regarding counts, my WBC is at 1000 today and the neutrophils are at 600.) I am receiving Neupogen shots again to help boost the numbers. Definitely weary of those!

Gary will be one year old on Wednesday. I'll be able to see him briefly this evening, and can hardly wait. I want so badly to be home with him. I am feeling a lot stronger this time, and things like working out on the treadmill are helping with endurance, so I may actually be able to take care of most of his needs once I get home. I'm excited about that. I have been so grateful for all the childcare my family (especially sisters) have provided, but I miss being mommy.

I pray you were all able to enjoy a blessed Thanksgiving holiday with your families. I have been able to enjoy a four day weekend with my husband and have more to be thankful for this year than I could ever begin to list. Mostly I am thankful for life, and for each moment I have been given as a gift. We love you all. Thank you for your prayers, and may the Lord richly bless you all.

Sunday, November 19, 2006

Day Six Update

Sorry for the delay in updating my blog. Overall it has been a good week. The Dr. has been pleased with my progress so far though I am still dealing with a very sore throat and the mucositis. The mucositis is a side effect of a drug that I finished today, so hopefully that should start improving over the next few days.

I've been spending time daily either walking the halls or using the treadmill in the exercise room. My neutrophil count hasn't hit its lowest point yet, so the next few days may still be hard until my counts begin to rise again. My days have been filled mostly with trying to eat as much as possible, a slow, painful process, and just sleeping.

If all continues to progress well I should be released from the hospital to the housing provided by the American Cancer Society by the end of the month or so. The doctors will want me to stay within the St. Louis area for about the first 100 days, though they did say they will transfer me back to my doctors at Ellis Fischel as soon as possible.

There is still a lot that time will tell. For now, we continually thank you for your prayers on our behalf. I have received far too many cards to list, but do want to thank the Wassons and PHCers for blessing us. Also to Emily for the very cool pink fuzzy hat. It's all the rage. :-)

Monday, November 13, 2006


After a restless night of sleep and possibly an even more restless day of sleep, I finally remembered that this transplant meant a chance to live -- I really had nothing to lose -- lightened up and enjoyed what took all of about 20 minutes to complete. My wonderful brother needed to provide 2 million stem cells and we found out tonight he provided 9 million. They can use about 8 million to help me bounce back a little faster, the rest will be frozen. I am so thankful for all he went through for me today. He was hooked up to the pheresis machine for about 5 hours, so I definitely had the easy day.

Now begins the waiting game. My counts are at zero and I've lost weight again due to the mouth issues. Dr. Westervelt said I won't feel good for a while but they will do all they can to treat the symptoms. I've been taking advantage of the hospital's good fruit smoothies. I'm allowed fresh fruit and veggies here even though neutropenic since the food staff is trained to work with us. Everyone here has been so wonderful. I have been much encouraged.

I found the first chapter of James to be very comforting just prior to transplant, along with yesterday morning's "Morning & Evening" by Spurgeon.

I apologize that this seems so scattered. Thank you for your prayers.

Saturday, November 11, 2006

T minus 2 and Counting

This is Amy's mom helping her post tonight. She wanted you to know how things were going. Radiation and chemo both went fairly well for her. She does have one side effect from the chemo. Her mouth has gotten pretty sore, no mouth ulcers but more of a break down of the lining in her mouth and throat. She is able to take pain medication before she eats to try to make that easier for her. Amy orders food that is soft and easy to swallow right now. She is enjoying the smoothies that they make here. At last weight check Amy has gained weight and this is certainly a praise. She has had some fever today. It is not high but she asks that you continue to remember her in this area. She would also like to experience a good night of sleep. They have had to give her lots of fluid post chemotherapy to keep the drug from becoming toxic in her kidneys. And we all know what lots of water does to us! We try to walk a couple of laps around the halls as she feels able to do so. With her mask on, we feel fairly safe walking on 5900. Her blood counts from yesterday show that she is neutropenic now. We need to be careful that she is not knowingly exposed to illnesses. She is grateful to the Lord for all the help He has given to her.

Amy's brother Daniel is doing a great job getting his growth factor shots - Neupogen. We commented to the nurse today that we hope they only increase his bone marrow production and not his height. Daniel is about 6 foot 4 inches tall at 17 years old. He has not had any noticeable side effects from the shots. He will receive one more shot tomorrow morning and then the pheresis will occur on Monday, November 13 beginning around 8 a.m., Lord willing. The collection should take approximately 5 hours. The collection of stem cells will be counted. They need around 2.5 million cells to transplant to Amy. It will also undergo other lab tests and then it will be transplanted into her sometime Monday evening. If the count of stem cells is not high enough Daniel will need to return on Tuesday to give more. It is truly amazing what God has allowed us to understand so that many people with blood cancers and other blood disorders can be helped. I have met other family members here on the floor and so many of them have good reports about their loved ones. That is good for me to hear.

Amy is so thankful to those who have sent cards to her and have contacted her in other ways. Thanks also to the Rodriguez, Quinones, and Ymker families for their gifts. She also wants to thank her family for all the help they have given to her -- to Aunt Linda and Uncle Ron for helping Daniel get to his appointments and letting him stay at their house during these days, to Emma, Christianne, and Lizzy for helping with Gary, and to Daddy for letting Mom spend so much time with her. She loves you all. Thanks to you all for your continued prayers for Amy and Daniel. We will keep you posted.

Until later,
Anita, Amy's mom

Wednesday, November 08, 2006

T minus 5 and counting

I just finished my last round of radiation. I haven't had any side effects so far other than maybe a bit of a tan, so praise God. I'm very, very grateful that I haven't been so sick and have been able to eat. My main complaint at the moment is a pulled muscle in my side. A visit to the chiropractor indicated a rib out of place in my back, but he said the muscle was pulled in front and that would just take time to heal. Thankfully I have access to pain killers and muscle relaxers.

I'll start chemo tomorrow. Two days of two hour long treatments. The drug is Cytoxin. I haven't looked it up but I think it has the potential to be pretty nasty so I would appreciate continued prayers that side effects would be mild.

Thank you all for your love and support. Just in case you didn't notice, I did put my Barnes address on the sidebar. It's quite lengthy, but that should get a note here if you were wanting to send one.

Oh, oh, and one more praise. I have a room with a view! After spending 5 weeks approx. at MU staring at a brick wall, this was an answer to prayer, so I wanted to be sure to share it with you. (The praise...sorry I can't a pic at the moment.) I brought in pictures and stuff from home, and my room is quite comfortable. So far being here has been a great experience. Wish I could have brought my favorite nurses from MU along, though. :-)


Monday, November 06, 2006

T minus 7 and counting...

My radiation was bumped up a day, so I'm actually 1/3 of the way through the process. I'll have two more treatments tomorrow, and then again on Wednesday. Thursday and Friday will be chemo, the weekend will be rest, and then I'll have my transplant, or "Day Zero" as they call it, on Monday, Lord willing. Today went much better than I expected. Radiation took about 15 minutes on each side, and I was able to listen to music so it was relatively comfortable. The positioning made my back hurt -- that's my only complaint. So far the anti-nausea drugs have been doing their job, which is a huge praise because I was really sick over the weekend and dropped all the weight I had put on so far. I was able to go home on Thursday evening, but began running fevers and feeling really sick by Friday evening and ended up back in the hospital last night (Sunday). Right now I'm feeling o.k. Much more at peace about everything than I had been in quite a while. I have access to an exercise room and the halls are kept relatively free of people so I plan to do a lot more walking and exercising this time to help regain some strength. At least for now while I'm able.

Thank you all so much for your prayers. Please pray especially for my husband. It's hard for him to be far away and unable to see me except on the weekends for the most part. Also, for my family as they once again share my mom. She's spending this week here at the hospital with me. I am very grateful for all of the sacrifices they have made on my behalf. Also, for my brother Daniel. He'll begin the Neupogen shots on Thursday.

I'll leave this rather short as I have to be up early for radiation in the morning. I know I've lost track over the past week or so as I've been ill with the high fevers, but thanks to those who sent notes of encouragement and even flowers. You're all such a blessing.

Oh, one last thing. Now that I have started the transplant process I am unable to receive flowers, plants, etc. I think silk are o.k. but I'm not 100% sure on that. My room is super clean with HEPA filters and they take a ton of precautions. We are also asking that people refrain from visiting from this point on. If you'd like to stop by and talk with my mom or Brandon, arrangements can be made to do so, but I won't be able to have visitors in my room. We love you all, but the ultimate goal is to make it through this, and something like the flu or pneumonia at this point could prove deadly. I know you all understand, and thank you.

Many blessings, Amy

Tuesday, October 31, 2006

Amy Wilhoite Medical Fund

There was a comment on my last post from some family members in AZ regarding the Amy Wilhoite Medical Fund. As we were getting people questioning the legitimacy, I removed the post until I could adequately address the fund. The Amy Wilhoite Medical Fund is legitimate. Since we have that out of the way, let me actually address the fund.

There has been a medical fund set up for Amy, through Bank of America. Originally, the account was set up to have a single place for donated funds to go from fundraisers that were being organized and held in both AZ and MO. By asking for the "Amy Wilhoite Medical Fund," anyone can make donations at their local Bank of America. Regarding what the insurance company is paying for – whether the transplant or the prescriptions we'll need afterwards to maintain a quality of life for Amy - is still unknown. As well as the immune building treatments, which aren't covered by insurance that we would like to have Amy treated with... We don't know what our future medical financial need will be, but we do estimate it to be high.

Amy & I refrained from posting any information about her fund on the blog as we wanted the blog to be an information source for friends and family, stating how Amy is progressing through her battle with this disease -- as well as a place for prayer and encouragement -- not as a place for the solicitation of money to help with medical expenses. We had created the fund for the use of fundraising events as it was never our intention to ask anyone for money, rather to let people give if they felt called to. We have received several gifts and donations from people and churches without asking and we never wanted to do so now. So, please, don't feel pressured to give in the slightest bit and only do so if you feel the Lord has put it in your heart to give. If you have any questions about the fund, you can call 480-538-4901 in AZ, 573-876-6223 in MO, or ask about it at your local Bank of America.

[Edited for clarity and to also add that Amy & I are very appreciative of the fundraisers and those organizing and hosting them. And also wanted to send quick thank you to the members of HSA for the package of cards sent to Amy -- she was very encouraged by the thought and the kind words]

Sunday, October 29, 2006

Brandon's View of Amy's Journey

Up until now I haven’t written much, but I wanted to take this opportunity to share of Amy’s Journey through my eyes. (This is somewhat rough and scattered, but hopefully still readable and understandable.) My wife is a lot tougher than I ever imagined. Each and every day since she was diagnosed, and even before the diagnosis, at home, she has dealt with the side effects of her disease before we even knew about it. This last year has not been easy for her, for us.

As Amy has written before, she had a physically demanding birth experience with Gary that showed me how strong she was. With the help and care of a great midwife Amy made it through and we were blessed with the sweetest and most beautiful little boy. A little boy that is growing up very quickly. We are nearing his 1st birthday and he has grown so much from that little guy who relied on us for everything. He has become so much more independent, walking everywhere, hiding and stockpiling food for his later consumption (animal crackers in the trunk of a push-along/ride-along car he has), to pointing at things and asking “Buh-Dis?” (What’s This?). He also loves to read and can often be found sitting next to our bookshelf with a pile of his books next to him going through each of them page by page. We are looking forward to his birthday and making a big deal out of it for him. We’re going to celebrate it a couple of weeks early since Amy will be in the hospital at Barnes for his real birthday.

We are actually at Barnes as I type this. Not sure how long we will be here. We came up Friday for a regularly scheduled appointment and she had been running a fever since Thursday night, so the doctor admitted her to be on the safe side. We were not prepared at all. We didn’t have enough food or diapers for Gary for an overnight trip, and neither one of us had extra clothes or even toothbrushes along… I did bring the laptop though to test out their wireless service, so that worked out nicely. In some ways, it has been nice to get a trial run of sorts here at Barnes so we know what to expect when she is admitted on the 7th for her transplant.

Overall, things are progressing as has been par for the course for Amy. The results of her last biopsy came back and she is still leukemic – 38% leukemic, which means she is worse off now than when they started this last round of triple chemo back in September. This means that all that horrible five-week stay did for her disease was maybe slow down its progress a tad. This also is more evidence that she has a very aggressive form of leukemia. She’s had some very powerful chemo drugs (four different chemo drugs, one given twice in two different dosages) that would normally do the trick, but have barely done anything other than slow her disease down, and with the help of transfusion, kept her alive to this point.

The statistics are overwhelmingly against Amy at this point and the transplant is a necessity. Though in some ways its kind of like she’ll die without a transplant, so we might as well try one because if she was in remission the odds are bad enough to make you really consider whether a transplant is worth it -- and having AML and not being in remission a transplant isn’t nearly as effective as if she were in remission.

Like all of you, I’ve been constantly amazed by Amy’s strength and faith as she has battled through each of these challenges her disease brings forward, and the side effects of all of these terrible chemo drugs and antibiotics. I know I wouldn’t have made it through some of the hardships she has and my heart aches knowing that she still has more to go through.

Unlike all of you, I get to see Amy everyday and see all of the little things, and the emotions that never make it to the blog. Not that Amy hasn’t been honest in her blog, she has, but she doesn’t usually type anything up on her bad days and when she does type its when she’s feeling better and looking back on those days now that she has survived the rough patch, and not through the eyes of one going through the rough patch. Though, we get to see some of that through her overall war with her leukemia, its the small battles that only I get to see her fight, and then she shares the results with everyone.

This battle has been difficult in so many ways for all of us. There is the physical side for Amy – she’s lost her hair and so much weight; she’s constantly battling fatigue; the nausea, headaches and weird side effects from the drugs and disease (Red Man’s, Hives, Sweets, etc); the pain from the biopsies and surgeries. We both have the emotional side of the very high chance that she will die from this disease, the chance of which increased after each round of chemo that didn’t knock her into remission. The transplant is her last chance – without it she will surely die, with it she may very well still die (from either her disease or the side effects of the transplant), best case, she only has to deal with the physical side effects such as dry eyes, permanent diarrhea, or even face a liver transplant.

We’ve both had to deal with the emotions of knowing that if she makes it through this that Gary will be our only child (yes, we both know that God can perform miracles and allows us to still have children, but we can’t count on miracles, we can pray for them, but we can’t expect them), and she will likely be reliant on drugs to get through each day.

Amy is not afraid of dying – there is hope in death. She’s afraid of leaving Gary & I alone, she’s afraid of living with a low quality of life from the transplant side effects, she’s afraid that all of this will be for naught and that we would have been better served enjoying our remaining time here on earth with each other.

In the last week, her platelets have dropped back down to 12,000, her hemoglobin has dropped down to the 7’s, the only good news is that her white count is above 7,000 (but how much of that is inflated from the neupogen shots I’ve been giving her every day?). While she was here at Barnes she received a blood transfusion that brought her hemoglobin back up above 9.5, but they have yet to give her platelets (inpatient they have to be at 10,000 or below, if they were releasing her they would). To make things worse, she’s been dealing with excruciating pain for the last two days as a vomiting spell Saturday morning threw a rib out and the pain medication they’ve been giving her for it just hasn’t been cutting it, while we wait for her regular doctor to come back on the clock Monday and see what he wants to do to alleviate her pain.

I am not afraid of what’s come to come. I’m more than willing and ready to serve Amy in whatever way she needs served if this leaves her with a low quality of life and on drugs and side effects that need constant attention. I’m ready to deal with the possibility that she may leave Gary & I – as a friend reminded me this week when I called him crying – there’s hope in death, I’ll see Amy again – and will do my best to raise Gary as Amy and I have already discussed and planned. I’m also ready to welcome her back home after winning this war with open arms and no lack of joy or excitement, and the honest desire to make every day we spend together incredibly specially memorable.

I constantly pray for the latter. I love my wife. I need my wife. I miss my wife. I will always be there for her no matter what this brings. But, oh, how I pray that God will bring her home to me.

After the transplant we hope to take her to Arizona to undergo some treatments to help rebuild her immune system, as on its own she would be severely immunosuppresed for the rest of her life (many of the same risks and symptoms as an AIDS patient). These treatments have a very good chance of allowing her to have a normal life, and we hope to maybe turn the trip into a relaxing vacation at the same time while we visit family and friends (and swim in the views of the beautiful mountains and blue skies).

Sunday, October 22, 2006


It is so nice to be home again. My doctors gave me a gift of a photo the day I left and the entire team signed it on the back. Such a touching gift! Even more so the ability to be home. It is a sobering thing when a doctor tells you he is glad you are going home because there were a few days they weren't sure I would be. This last round of chemo hit me really hard, and I am grateful to the Lord for bringing me through it. I don't express the extent of sickness in my blog posts, mainly because I don't post when I'm sick. I don't do anything when I'm at my worst, and days go by that I don't even remember afterward.

Friday at Barnes was exhausting, but productive. My brother, Daniel (17), is my marrow donor. I ended up with four perfect matches (I know I am blessed in this) but he is the oldest, so they chose him. Between the two of us we had several different lung and heart tests done, and about 30 vials of blood drawn. I also had a bone marrow biopsy. I believe it was number six since July and I am very, very weary of them. This particular one is lingering in pain to the point that I filled my synthetic morphine prescription to hopefully aid in the pain that Tylenol is not touching. I am also still in a lot of pain from the placement of my new "Hickman." Technically it isn't a Hickman, but it is so similar to my last one that I am calling it such. Anyway, back to Barnes, I'll be going in for transplant within the next month. I see Dr. Westervelt again on Friday and we will go from there. I need to put some weight on and we also need to wait for insurance approval for what is about a half million dollar procedure, thus the delay. My brother will receive Neupogen shots for a few days and then they will harvest the marrow using what one of my doctors referred to as a "cream separator" on day five. The same days he is receiving shots I will be receiving two days of radiation, and two days of a rather intense form of chemo. Both cause infertility, so I have been dealing with a lot of emotions. I am trying to constantly remember that God has us, and this is all within His plan. My husband got a new CD the other day by a band he likes, Stavesacre, and one of the lines from a song stood out to me:

I'm not looking for a reason to believe. I do. I breathe, that's enough for me.

That's how I've felt the past months. Just a deep trust that God has us, even though there are days when my faith is weak. I will admit I'm scared of what is coming up. I had to sign off on a very detailed consent form for the transplant, and it isn't going to be easy. Knowing how sick I will be, having just been there, is so hard. Knowing I could die, or knowing there are things worse than death, such as severe GVHD, are really hard to deal with. Oh, I know there will be grace for it, but right now I am scared, and I am just really, really wanting all of this behind me.

I am so, so thankful for my brother and his willingness to sacrifice for me. It is an amazing thing to think that I will basically be him by the end of the year -- his DNA running through my blood. I am blessed to live in a time when we have these options, when I have a chance to live. When I have a chance to possibly be "cured" to the extent that leukemia can be cured. We're also blessed to live in a time in which harvesting marrow is a rather simple procedure. It used to involve a bone marrow biopsy in which the patient was put completely under anesthesia and marrow was aspirated about 80-100 times. Having had about 3-4 aspirations per biopsy personally, if you weren't under all the way, I think it would kill you. The worst of it for him will be the 4-6 hour harvesting procedure, and possibly the Neupogen shots. I've been on Neupogen for about three weeks now, but he will be receiving a much higher dose, and it does have some painful side effects. (Bone pain, headaches, etc.) In fact, they sent me home with a seven day dose of shots which Brandon has been giving me each day. This has certainly been an exercise of trust with our marriage as we learn even more about the "in sickness and health" portion of our vows. How thankful I am for him, though, and I admit some of his sticks have been better than the nurses.

I'll probably update again after Friday's visit to Barnes, once I know more about when I will be admitted, etc. I've been told to expect a 3-4 week stay in the hospital and then I may be in hospital housing for a while afterwards. They like to keep you close for 100 days, due to the high rate of GVHD.

Thank you, once again, for your prayers for us. Blessings to you all, Amy

Thursday, October 19, 2006

Going home

I'm going home today. The doctors said I'll be discharged by noon. Not sure if that is going to happen, but I'm trying to be patient.

I had surgery on Tuesday and have my new catheter placed. It has three lumens this time and is on the left side of my chest. They weren't able to place it in the same place as the other because of scar tissue. I'm still really sore from it, but they've had me off the IV since yesterday so I've just been taking Tylenol.

I have an appointment with Barnes tomorrow morning and will see Dr. Westervelt in the afternoon. I don't plan on being admitted tomorrow. I'm hoping for a weekend at home. I want to spend time with my family and try to put on some weight. Last I was weighed I had dropped to the mid-90s. I lost a lot this time and look pretty bad. Between my arms and bony body I think I look like a heroin addict. Thankfully I'm just sick.

Thank you for your prayers. Thanks also to Meam, Rachel, Anne, Aunt Susie and Kathie for the cards of encouragement.

Sunday, October 15, 2006

Counts rising, surgery tomorrow

My counts are finally starting to come up. Today my white count was at 900. Still neutropenic, but we're getting there. Please pray that they will continue to rise.

I will most likely be in OR tomorrow to have my Hickman replaced. They are replacing it with something similar, specified by Barnes. I'm a little nervous about it even though last time went fine. I am very anxious to have it replaced, though. My arms are really beat up from daily blood draws and the IVs I have in currently have been very painful. The meds I'm on are hard on the veins and sometimes they just burn.

I'll be released from MU this week into the care of Barnes. Not exacty sure what day this will happen. I'll keep you updated as much as possible.

Thanks to Rachel D. for the book. Thanks also to Rachel D., Dixie, Meam, Rowena, Peggy, Mara, Aunt Kristy & Uncle Jim, Anne, Colleen, Rachel E., Perdews, and Grandpa and Linda for the cards.

Monday, October 09, 2006

Bone Marrow Biopsy #5 Update

I'm fever free for a while so I thought I would take this opportunity to update. The results of my bone marrow biopsy looked good. No sign of leukemic blasts. We are still waiting for my counts to rise and then I'll have another biopsy. That is probably my biggest prayer request right now, that my counts would rise and the fevers would break and I could start coming off all the drugs. I've been using Ativan to help me sleep a lot lately. It seems to be the best way to deal with everything.

I'm still struggling with my appetite, nausea and vomiting. I've definitely lost weight but I think the Lord is preserving my body in that most of my nutritional levels are looking o.k. with daily blood draws. I am having trouble with potassium. It has been very low due to some of the drugs I'm on. It's hard to take through IV and I am not tolerating it very well otherwise.

They took my Hickman out in the middle of the night (early Friday morning). I had cultures drawn today. If those come back clean I'll be getting another Hickman or whatever Barnes prefers. The doctors are consulting with them. I'm very anxious to have it back as I really don't have any veins left for morning blood draws. And I think the IVs are very uncomfortable.

Thanks to Pastor and Mrs. Preusch for the encouragement today. Thank you also to Grandpa and Grandma O, Lizzie, Meam, Kim N, Calzones, and Applegates for the cards.

Thursday, October 05, 2006

Biopsy #5 and other news

This is Anita, Amy's mom, posting for her. Today was biopsy day for Amy. Overall, it was the best biopsy yet. The doctors have found a good mixture of drugs to help her. She mainly felt pressure and poking and very minimal pain. Her new hematologist, Dr. Kingslee, did a great job. He has shown all of us so much kindness. We are grateful that he came in yesterday and prayed with Amy and then also prayed with her today before he did the biopsy. He will probably know preliminary results Friday afternoon. Otherwise we should know results on Monday.

Amy is still spiking fevers throughout most days. We had news this afternoon that blood cultures are positive for staph infection in her Hickman port line. This is not good news at all. It means they will have to remove the port from her, treat her with powerful antibiotics, and re-insert a port after the infection is gone. This is definitely a matter of prayer for God's protection over her body. She is also on an anti-fungal called amphotericin-B, nicknamed ampho-terrible. After about the first 1 or 2 hours of infusion she reacts with tremors that only seem to stop after they give her several doses of demerol. The infectious disease doctors say that she must have this drug since she is still neutropenic. Her counts remain low and they are giving her red blood tonight and gave her platelets earlier in the day.

We have heard from Barnes Hospital in St. Louis today. They report to us that Amy has 4 siblings who are perfect matches for a bone marrow transplant. This information has been reported to the physicians and we should hear from them as to which one they feel will be the best match for her. Until then, we are not saying who the blessed four are. Stay tuned. . . Please remember to pray for the little girl that Amy has mentioned in the past, Baby Livi, who has no siblings and needs to find a perfect match for her future BMT. We are grateful to the Lord for His provisions for Amy and know that His hand has provided. "All I have needed Thy hand hath provided. Great is Thy faithfulness, Lord unto me!!"

Thank you as always for praying for Amy and all of us.

Wednesday, October 04, 2006

Quick Update

[From Brandon] Amy's got her bone marrow biopsy scheduled for tomorrow morning at 11:00. Prayer would be appreciated. The results of this biopsy have many many decisions hanging on them.

Friday, September 29, 2006

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.

Tuesday, September 26, 2006


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!)

Saturday, September 23, 2006

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:
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.

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,

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'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.

Wednesday, September 20, 2006

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

Sunday, September 17, 2006

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.

Thursday, September 14, 2006


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.

Tuesday, September 12, 2006

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.

Friday, September 08, 2006


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!"

and will proclaim what the LORD has done.

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

Tuesday, September 05, 2006

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.

Saturday, August 26, 2006

Barnes appointment & upcoming treatment plan

Yesterday was our trip to Barnes -- the Siteman Cancer Center, specifically. We got there about an hour early for labs and then met with Dr. Westervelt. The appointment was very informative. I was told that they do not actually know yet if I am in remission. The doctor implied that it is probably a safe assumption given that I am feeling better and my blood work looked pretty good yesterday, but he said they will need to do one more bone marrow biopsy to verify. Basically he said the previous biopsy was 100% clear meaning it showed nothing. They consider you to be in remission when they see normal cells and few or no leukemic cells. (I'm probably over-simplifying, but I believe that is basically correct.) He does not feel a bone marrow transplant (hereafter BMT) is necessary at this time. He said they have about a 30% chance of controlling the disease with chemo, and at this time that is a better outlook than doing a BMT. It is possible that we could look back down the road and say that a BMT now would have been the best route, but I feel God is sovereign over that as well, and trust the doctors He has given me and their opinions on the matter. I was somewhat discouraged to learn that I am facing more chemo. I admit I had gotten it into my head that I was done for now, and facing high dose Ara-C is really overwhelming. (Also known as Citaraban, which was one of the chemo drugs I had with induction therapy.) The same side effects apply, and my immune system will bottom out again, so the same possibilities for infection and just everything all over again basically. At this time I do not know the schedule for all of this. Dr. Westervelt said if I were having the treatment done at Barnes they would probably do outpatient -- six treatments every other day. He wasn't sure if the MU hospital would do the treatment inpatient or outpatient, so I have yet to learn more about that. I'm actually hoping it will be inpatient. If for no other reason than getting to see my nurses again, who feel like my long-lost friends! Dr. Westervelt will be calling Dr. Perry and giving him all of this information and we will proceed from there. I will probably contact Ellis Fischel on Monday or Tuesday to see about an appointment if I don't hear from them first. At this time I fully expect a biopsy again within a few weeks and for consolidation to start rather soon as well. But, I honestly don't know.

I think the hardest part about yesterday was just being faced with the solemnity of this disease. There is no happy, there is no cure. Even a BMT allows about a 25% relapse rate, and the potential for poor quality of life after a transplant causes us to wonder if it is truly worth it. Plus, there's a 25% mortality rate, so there are serious risks involved. For now, if I am not in remission we will work to get me into remission and then go straight to a transplant. Otherwise we will reserve a transplant for second remission if I were to relapse, which statistically is more likely than not. My parents were able to go to the appointment with us -- my aunt watched Gary in the waiting area for us. My dad commented something about it being nice that I was finally feeling well enough to be able to participate in the appointment, but at the same time it was like, wow, I'm finally feeling well enough to participate, meaning everything is really just starting to hit me, and I'm coming out of survival mode and realizing how majorly serious this all is. I am thankful that for now, most likely, I won't be facing a transplant. We're going to hold off testing my siblings for now as well. Each one has a 1 in 4 chance of being a match, so statistically I should have a sibling match. Thanks to an e-mail from a pathologist who has been reading my blog, we were able to clarify the information we had been giving regarding my cytogenics. As a result the doctor ordered an additional test (FLT-3) that can give us further information regarding my risk for relapse. We were very grateful for the information that allowed us to ask further questions and obtain more knowledge about my disease. The doctor also verified that I have subtype M4 with normal chromosomes, which we weren't sure about previously.

With each discouraging day it seems the Lord is great to bless us with encouragement. We found out yesterday that someone has arranged for a month of meals for us through Super Suppers. ( One of the local employees, possibly even the owner I guess, just stopped by with a few entrees and an edible bouquet of chocolate covered strawberries. This is just one of the anonymous gifts we have received. Being unable to thank all of you personally, please know the extent of our gratitude. We have truly been overwhelmed by the generosity and love shown to us by so many, even so many of you that we have never met. We are also exceedingly grateful for the prayers offered on our behalf. My husband keeps reminding me not to get caught up in the statistics and lose hope, God is still in control, and He still knows my days. I want to be able to focus on His blessings, and the beauty of each new day, and not so much on the fact that my days on earth may be much more limited than I ever expected and that my plans are not His. I am so grateful for every minute I have with my husband and baby. Brandon is home this weekend, his first weekend off in about six weeks, and it is just wonderful to be together as a family. Gary is doing really well. I've seen him take a few steps now. His balance is improving everyday and he thinks he's big stuff when he stands up in the middle of the room and takes a step or two before plopping down. He crawls like lightning and gets into everything, so he keeps his momma busy. I love it though, and have been grateful for renewed energy everyday. It gives me hope that I can make it through this next round and hopefully be back to this point before the holidays. It is a long, hard journey. I think often of Pilgrim's Progress, and I told mom today that I dread walking back through the Valley of Despair, but there is a place of rest as well, and I know God goes with me through it all. I spent some time wallowing in misery the other night asking "Why me?" and Brandon replied, "Why not you?" The saying, "There, but for the grace of God, go I" came to mind. We talked for quite a while and just once again remembered that this is my path -- our path -- and that there is grace for it. I am thankful to the Lord for the gift of faith, because without it I don't think I would have made it this far.

I'll update again once I meet with my doctor here and have more information on the upcoming treatment. Once again, thank you all for your prayers and encouragement!

Friday, August 18, 2006

Home & Barnes

I finally have enough energy today to attempt a post. I don't know why, but being home leaves one feeling much more drained than being in the hospital, I guess it's just the environment. Coming home after such an extensive stay was somewhat traumatic. As much as I longed to be home and have a night of sleep in my own bed with my family, no 4 a.m. vital checks and blood draws, I actually told my husband Tuesday morning in the midst of my tears that I wanted to go back to the hospital because "it was easier and food just appeared and everyone just took care of me." Not that I am not being cared for at sisters have stayed to help me care for Gary. Brandon has been back to work -- throughout all of this he has not missed a day. Not that he's a workaholic, he's new to his job and doesn't have any sick or vacation leave until he's been employed for six months. God has blessed and worked it out so that every day I have needed him (bone marrow biopsies, leaving the hospital, etc) has been a scheduled day off due to working several weekends lately. He's leaving tomorrow for a four day business trip and I'm finding the idea of coping without him quite difficult, but my mom is coming to help care for me, so we'll make it. Thankfully this has been the first job in which insurance has been effective from day one. God certainly went ahead for us in that regard, and provided us with some excellent coverage to boot, though a nurse from the insurance company called today to remind me of my two million dollar lifetime limit which I suppose I am somewhat quickly approaching. She was calling regarding a bone marrow transplant specifically, and I found out a little more about what costs are involved with those.

I have never been so wiped out in my life. I couldn't walk for days after my baby was born, and thought that was the most wiped out I would ever be, but this has brought me to the utter and complete end of self. I spent the first few days home crying and blubbering like a baby, having a total and complete pity party. I found myself dealing with everything I'd just been putting off for six weeks. My husband reminded me that I was also void of all emotion-suppressing drugs, so I guess it just all caught up with me. They took me off all meds the weekend I left, and sent me home with absolutely nothing. I've found that waking up every day can be misery if I focus on all I am not, all that I used to be, and the fact that my baby doesn't know me as mother anymore, etc, but I can also focus on the fact that I am alive, that six weeks ago we didn't know if I would be, that my baby has the chance to get to know me again, that I am not just a name he is told about someday. So the past few days have been full of lessons for me, as I learn once again to praise my God for the gifts, not blame Him for what I feel are the losses. Once again I have to realize that it's one day at a time, that I'm right where I'm supposed to be, that He is sovereign and I'm not going anywhere until He is done with me. I should think by now that I could live without fear, having stared death in the face more than once, but still I have to give my fears to Him daily.

Especially hard right now is the unknown in my near future. I have an appointment with Barnes in St. Louis next Friday at 1:30 p.m. with their transplant team. My oncologist went from saying one day that he's pretty sure they will just tell me to go home and live my life to "you're 25, and it would be a cure, you might as well." I also have no idea what is in my future if I don't have a transplant and just have follow-up care. No one has told me if I'll have consolidation chemo treatments. I think overall they are just not quite sure what to do with me yet. I'm 25 and have AML. People my age don't get AML to begin with. I have yet to hear of anyone who is 100% clear after two chemo treatments. That just doesn't happen. My doctors have never come out and said I'm a miracle, but when I have commented on the number of people praying for me they have said, "Well, obviously prayer works." So I am unusual, I am a sign of God's hand -- the result of your prayers. I am learning once again to just trust my Savior.

It is my goal to write everyone once I being feeling stronger. I have so much I want to say, so many thanks to give to all of you. By the way, we're not entirely sure what is happening with the mail I was receiving from the hospital. My husband stopped by the mail room and talked to them one day (one clerk told him in 24 years they have never known anyone to receive so much mail and I had my own bucket in the mail room). He was told that all my mail would be returned to sender, but I have received several forwarded letters. I think any packages that I was aware of were received prior to my leaving, for those of you who may be wondering. A thousand thanks to you and I intend a more personal note soon. How you have all blessed my heart!

Prayer requests at this time would be for health. I have the immune system of a newborn, basically, and still need to stay away from sick people, crowds, etc. Also that the Lord would prepare us for our appointment with Barnes and the information we will be given there. Thank you all!

Tuesday, August 15, 2006

Home at Last!

This is Brandon once again writing on behalf of Amy. She is now home. Though she is very tired and worn out still. She is home. All of us are very grateful for her being back home, but realize it is still a long road to go. We have a follow up/2nd opinion consultation with Barnes in St. Louis sometime next week, and then will have another follow up with the doctors back here at Ellis Fischel. Amy will post an update in the next couple of days on how she's doing, and we will, of course, post updates after the consultation at Barnes and the follow up here. We are working with the hospital to make sure we get our mail so that any cards or leters still sent to the hospital before the good news came, can still get to her. 6 weeks in the hospital have left her very weak physically and very tired.

Thank you so much for your continued prayers! We, she especially, appreciate them very very much.

Saturday, August 12, 2006

Homeward Bound

Wonderful news today -- my white count is up to 6200 and my neutrophils jumped to 2910! My iron and platelets are also climbing on their own, so no transfusions. The doctor came in to tell me while I was napping and said she thought it was worth waking me up. I agreed. They are in the process of removing my antibiotics. I'll go home with two of them, so they're changing from IV to oral. Dr. Papageorgio said this morning that he expects me to go home on Monday, possibly Tuesday morning. I'm rooting for Monday, and I'm stopping at Outback on the way home for a salad to go! :-)

Dr. Papageorgio also said he plans to refer me to the transplant team at Barnes in St. Louis to consult with them regarding a bone marrow transplant. He expects they will tell me to just go home and enjoy life, because I'm in the moderate risk group for relapse. Statistically my chances of relapse are less than the chances of dying from a transplant. It's something we're praying about, and right now we're not wanting to do a transplant, so I trust the Lord's leading in the matter, just as He has gone before us in every other step of this journey.

I think they're going to leave my Hickman catheter in place until the consult, just in case, but that should be within the next week or so. Assuming they tell me I'm not a candidate for transplant, I'll come back in for outpatient surgery to have the catheter removed. I admit I'd prefer not to take it home with me, because I always worry about Gary pulling on it or snagging it on something. Plus, I'll need to take care of the bandage and flushing the lines myself, and it kind of grosses me out. But, that's life, and I know I'll have help with it if I need it. (It's located below my collarbone on my right side in case I've failed to mention.) Several of the nurses have asked me if I'll go to nursing school after all this, but there's no way. I respect them greatly, but could never do their job. I don't have the stomach for it at all. It's challenging enough making it through IVs, blood draws, shots, and everything else I've had in the last 6 weeks. I've had my fill of it!

The nicest thing about being out of neutropenic stage is that I can finally kiss my husband again. Unfortunately he's on a business trip right now, but I'm looking forward to having him home. Gary was in today and I gave him ever so many kisses. It's a nice feeling to not be terrified of touching another person.

So today has just been full of praises that my counts are going up, and that the doctors are so optimistic about things. I'll be seeing the oncologist often for check-ups, but they aren't planning any follow-up consolidation (chemo) treatments since I'm 100% clear, so that is a praise as well. I am just amazed and astounded at God's work in my life, our lives, and it has been a wondrous thing to see His answers to the prayers of thousands on my behalf. I don't know what the next few years will bring, but I know God does, and that gives me peace. I do know that I value every day now in a way I never did before, and I have come to realize how utterly dependent we are upon the Lord, and how He sustains each of us daily. We are truly fearfully and wonderfully made -- I have witnessed the horrors a single cell change can cause.

"But for me it is good to be near God; I have made the Lord God my refuge, that I may tell of all Your works." Psalm 73:4

Friday, August 11, 2006

Climbing higher

Good news today -- my white count is at 2500, neutrophils at 620. That means I'm no longer neutropenic, but they still won't let me have a salad. My iron and platelets are still on the low side, so there's a possibility I'll need a transfusion sometime this weekend. So far I've made it over 24 hours without a fever, so they are going to start removing some of my meds to see what happens. They're starting with the one that affects my vision, so I'm really happy about that.

I asked the doctor if he could give me a ballpark idea of when I can go home, and he said possibly as early as the 15th of this month. They are going to continue the Neupogen shots since they appear to be helping. So my prayer requests specifically today are that I will remain free of the fevers, that my counts will continue to rise, and that I can go home next week. It's a little scary to let go of the antibiotics -- kind of like losing my training wheels or something. But I know that God is the one who has kept me alive up to this point, and that He will continue to do so until He is finished with me. Thank you all so much for your prayers.

Thursday, August 10, 2006

41 Days

I just noticed this evening that this is my 41st day in the hospital. No wonder I'm sick of cafeteria food! :-)

Since I last wrote I've had another CT scan and chest x-rays, all of which came back clear. I've ben running a high fever off and on and the doctors are thinking it may be caused by one of the antibiotics I'm on. They haven't removed any of them, though, because they want my white count to be a little higher before they start pulling the safety net. Yesterday was probably the worst day. My fever spiked to 41.7 C by ear, and 40.8 C by mouth. (Read close to 107/104) I think I was delirious part of the day, because I don't remember much. I don't even remember going down for the CT scan. When I woke up after a nap around 7 p.m., Brandon and my parents were here with Gary. (The doctor approved a 20 minute -- no drool or kisses -- visit.) I kept asking Brandon and my dad why they weren't going to work, and they kept telling me it was evening, but then I would forget and ask again. I was just so confused. My cognitive abilities are really poor right now, and I'm having a hard time remembering things. Some days I think it is due to the fever, and some days I wonder if it's a side effect of the chemo or one of the meds I'm on. They have given me Ativan some days, and that can cause some confusion and short term memory loss. I'm also on a new preventitive anti-fungal med that is causing a lot of vision problems. Lights and things like TV or computer screens just seem really bright to me and I catch myself squinting a lot. Reading is difficult as well. Everything blurs. I'm even more grateful now for sites like and enjoyed listening to a sermon by C.H. Spurgeon. I think I fell asleep about halfway through, but what I heard was really good.

I received platelets again yesterday and had a reaction. It may have been responsible for the high fever. I've been running fevers for about a week now, but yesterday was by far the worst. I think I am going to ask them to pre-med with a small dose of Benadryl next time, or some other kind of antihistamine. My iron count is starting to climb on its own and my white count was 1300, up from 600 yesterday. My neutrophils are up to 300, which is great. They need to be at least 1000 before I can go home. I'm still getting a daily shot of Neupogen and apparently it's working. So I am praising God for causing my blood to rebuild, and no fevers today. My main complaints at present are side effects of meds I'm on, so I look forward to the day when we can start removing those and I can go home.

As always, thank you for your prayers on my behalf!

Tuesday, August 08, 2006

MRI & Transfusion

Thank you all so much for praying for me over the past few days, especially relating to the MRI. I was really nervous about it, but ended up having a lot of peace and it was over before I knew it. (I think the Ativan helped as well.) They let me see the scans afterwards which I found very interesting. The results were back this morning and everything is normal. They have been trying to find the source of my fevers, and the main reason they ordered the MRI was to check once again for fungus.

I received two units of blood yesterday, so my energy is up today. It's all relative -- I'm still really weak and tired. This past week has been harder on me than the second round of chemo was. I am still receiving Neupogen shots to help my bone marrow rebuild, and today it showed signs of working -- my white count is at 500. I think the doctor said that's the first time it's been 500 (or above) since July 27th. So that's a big praise -- things are heading in the right direction. My neutrophils are still at zero, so they are still restricting visitors and I can't see Gary. I miss the little guy. The kids (my siblings) and Brandon taped about a half hour of footage on our camcorder, so that was fun to watch this morning.

I remembered a few days ago that I could listen to Scripture at They have selections from the KJV, and since I've been too sick to read, it's been very relaxing to me to just listen. I also discovered they have old sermons by Charles Spurgeon, among others. I find his writings very encouraging, so having the opportunity to listen to some of his sermons is a blessing.

The first book I listened to was Hebrews. The following caught my ear especially:
"For the word of God is living and active, sharper than any two-edged sword, piercing to the division of soul and of spirit, of joints and marrow, and discerning the thoughts and intentions of the heart. And no creature is hidden from his sight, but all are nailed and exposed to the eyes of him to whom we must give account. Since then we have a great high priest who has passed through the heavens, Jesus, the Son of God, let us hold fast our confession. For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin. Let us then with confidence draw near to the throne of grace, that we may receive mercy and grace to help in time of need." -- Hebrews 4:12-16

I found Hebrews to be fascinating. I've been thinking a lot about the people of the Old Testament whose names are mentioned in Hebrews 11. Such incredible faith, and they did not even know about Jesus Christ -- they only had the promise, and they held tight to that. My faith is so weak, but thankfully His grace is that much stronger.

Monday, August 07, 2006

Monday Night

Again this is Brandon posting on Amy's behalf. She asked me to post to let everyone know that she will be undergoing an MRI tonight. She asked if you could all pray for her to have peace and that God would calm her nerves.

Thank you,


This is Brandon, posting for Amy since she is too tired and weak to do so herself right now. Since I don't type even half as fast as she does, this will be a significantly shorter posting than you all are used to. Her white blood count has been holding steady for the last several days at between three and four hundred, her hemoglobin is down to 6.7 and her platelets to 28. She will most likely be getting a blood transfusion, and possibly platelets again, today, though it may end up being tomorrow as they are being extra careful to make sure they have an exact match now. With the low hemoglobin count she has just been extremely physically weak and tired the last couple of days. She has also had more fevers, mostly low, but yesterday had several high fevers (depending on whether you go by ear or mouth they were either 104.5-104.9 or 102.2-103.1, respectively) and has had a hard time keeping food down both yesterday and the day before.

Everyone's comments and emails are very encouraging for her and she wants me to make sure I thank everyone for her. So, thank you. Thank you also for your prayers -- knowing that people are praying for her is the biggest encouragement for her. She has continued to receive ever so many cards (her count now is up around 300) and each one blesses her so. There are so many of you that have written such touching messages and emails that she wants to reply to, but just hasn't had the energy to do so, so know that she is encouraged and thankful for your kind and caring words. There are also several of you going through your own trials (health, familial, life, etc...) that she has been keeping in her own prayers and I just wanted to try to encourage you by letting you know that she thinks of you often.

Once she gets the transfusion she should have some more energy and will likely post an update of her own, but in the meantime if you could continue to pray for her, specifically that she'll get past these fevers and that her white blood count will start to climb, we would both be very grateful. Thank you all so much for your love and kindness.

Friday, August 04, 2006

Friday Update

The doctor said today that I am only allowed visits with my caregiver (Mom or Brandon), so I won't be able to see Gary for a few days. I haven't seen him since Tuesday, so I am sad about that, although at the same time I would be too tired to really visit with him anyway. We had a really fun visit with him on Tuesday night. At first I had a hat on and he didn't seem to like it one little bit, but once I took it off he grinned and squealed and proceeded to pat and kiss my bald head. He seems to really like it.

My white count dropped, which concerns them, and he wants to be especially cautious for a few days until he sees it begin to climb again. (400 yesterday, 300 today, just fyi) They just gave me a shot of Neupogen, which is supposed to stimulate my marrow to make blood faster. Ouch. It causes pretty serious bone pain, but he said they will give me pain meds if I want. He also emphasized the importance of resting. I've been using meds to help me sleep at night for the last several days. As my iron drops it's easier and easier to just sleep all day. Maybe that's the best thing for right now, though.

I have still been running fevers off and on. I remember a woman who had cancer when I was young commenting about the "shake and bake" she went through. I understand exactly what she meant now.

The platelets, which were due yesterday afternoon, just now showed up. My platelet count dropped down to 7 this morning and I have petechiae all over my body again. They've had to draw a lot of blood lately, and my iron count is down to 8.1. (When I run fevers they culture blood from my arm and blood from my Hickman catheter). I've got a couple of blown veins in my arms now. Hopefully they won't run out of places to stick.

Well this day's been crazy but everything's happened on schedule
From the rain and the cold to the drink that I spilled on my shirt
'Cause You knew how You'd save me before I fell dead in the garden
And You knew this day long before You made me out of dirt

And You know the plan You have for me
And You can't plan the ends and not plan the means
And so I suppose I just need some peace
To get me to sleep

- Table for Two, Caedmon's Call

Thank you again for all your prayers! We realized a few days ago that we have heard from every continent. I can't explain what an amazing, humbling thing it is to know that people are praying for me all over the world.

Thursday, August 03, 2006

The last few days

My husband encouraged me to update my blog. I've been fighting fevers since Monday, and dealing with a plummeting iron level as well, so my energy is pretty much zapped. Tuesday's CT Scan went fine. The tech let me see some of the pictures on her screen afterwards which I thought was really neat. The doctors told me the next morning that everything looked normal. No mushrooms growing in my cheekbones or anything like that. It was comforting to me to have the scan because it's easy to wonder when you have cancer in your blood if it truly hasn't affected any organs. They are still adding an anti-fungal drug to my long list of meds. They warned me about color changes and seeing colored circles, etc. Another side effect is seeing things that aren't there. That hit last night while mom was here with me. She was on the laptop and I kept asking her if she could see the man moving on the screen -- looked like a commercial running under the main screen she was viewing. I also started in with some rather violent teeth chattering and muscle spasms that lasted about 15 minutes -- until they administered Ativan. I've had the same dosage again today and so far all I've had are some color vision changes. Keeps things interesting, I guess.

For now my team is concentrating on getting me healthy. They haven't been able to figure out a cause for the fever. Other than a bit of a sore throat I really don't have any symptoms. They've drawn tons of blood this week for cultures but last I heard nothing was growing, so they don't know what it is. The fevers really wipe me out. I am anxious for them to end. My white count was holding steady today. It has quite a way to go before I can be allowed to go home. At that point we'll begin consolidation treatments and I don't know anything about those yet. They may be outpatient at Ellis Fischel or inpatient here at the University Hospital. I'm expecting some type of chemo, and I think the verdict is still out on a possible (sibling match) bone marrow transplant. Needless to say, the road is far from over. It's a difficult thing emotionally to hear "remission" and have so much joy with that, and yet realize there is still so much more really hard stuff to make it through. I'm beginning to read a little more about chemo side effects as well, and sometimes that can be discouraging. I told Brandon today that I need to be careful because I know my iron count is dropping (8 something today) and Dr. Papageorgio said he doesn't like to transfuse people my age, especially ones who are BMT candidates, so he won't unless my iron gets dangerously low, to quote, "Like a 5." I haven't been that low and really don't want to. The low iron makes me so tired and weary, and everything seems like too much, and I end up feeling tired and depressed. I don't want to get stuck there. I just need to still be able to remember to praise Him even if the days seem really dark.

I am also beginning to ponder some of the long term effects all of this will have on our lives. Chemo induces menopause in the large majority of women, and it can be temporary or permanent. I was told at the beginning of all of this that I will probably be infertile. I have heard of women who have made it through cancer and have gone on to have many children, so I know that can happen as well. It's just a hard kind of waiting game to see which catagory you fall into. At this time the doctors don't think that I'm menopausal, though I do seem to have a lot of the symptoms. I told mom today that sometimes I sit here and think, "Why didn't I get pregnant as soon as we got married? We could have 2 or 3 kids already." Or the reverse side, mourning the children I planned, but may never be able, to have. But then I realized that there isn't a child there to mourn if I'm infertile. God's sovereign over all -- family size included, and if our quiver is full with one, then that is all it was ever meant to hold, and praise Him for it. We didn't lose any along the way. I find comfort in that. These are the sorts of things that are going to be the hardest part of this journey, I think. The emotional and spiritual.

I've been spending this week praying for those of you who have written me and are going through similar sufferings. I know some of you have had bad test results this week, some yet to be determined. My heart aches for you and I want you to know you are being brought before the throne. I know His grace will be sufficient for you as it has been for me. Even when we don't really see it. My husband keeps reminding me to take it a day at a time.

A friend who attended Gary's birth shared from Matthew 6 in an e-mail to me recently. It has been going over and over through my mind.

"And which of you by being anxious can add a single hour to his span of life? Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble." Matthew 6:27,34

It's very, very easy to sit and play the mindgames with the statistics the doctors give you. It is so overwhelming to try to decided if this risk is worth that risk or maybe even a completely different risk. I start trying to figure out what's going to be happening down the road with my treatment, etc, and I think I need it yelled to me everyday to just take it one day at a time. I am hoping once I begin consolidation I can work with Dr. Perry again. He came by yesterday to see me and asked if I'd heard the news of my biopsy. I said yes, and that I wish they had let him tell me since he had to tell me all the bad news -- it only seemed right. He said the report had come across his desk that morning and he wanted to come see me in person. I'm so glad he did, because I so wanted to thank him. As he left he reached over, said, "You did good, kiddo" and gave me a "germ free kiss" on the top of my bald head. I was left in tears -- so grateful for this man whose skill and knowledge has allowed me to be sitting here today sharing with you. I told mom that they have truly been ministers of God for good in my life, and I have been so thankful for each and every one of my doctors, and their dedication.

I am supposed to receive platelets today. They have had a hard time locating them, because the Doctor wants them to be my exact (rare) type. I was just updated that they will be here around 4 a.m. I am expecting my iron to possibly be low eights or even seven tomorrow, so if you don't hear from me for a few days, it is because I am bone weary. One of my dear friends told me I've fought hard, and now is the time to rest. So tonight I pray for rest, and for all of you.