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.

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. :-)

Transplant

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.

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

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. :-)

Blessings,
Amy

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

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]

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).

Transplant...

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

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.

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.

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.

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.

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.

Same old...

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

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

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

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

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

Update

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

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

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

Spurgeon for the Day

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

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

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

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

Blessings all,
Amy

Reinduction: Round Two Update

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

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

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

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

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

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

Reinduction: Round Two

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

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

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

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

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

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

The weekend in between

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

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

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