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.