Monday, July 03, 2006

The Journey Begins

I wholly believe my journey through leukemia began from the foundations of the earth. The Lord has had this fully written in His plan for my life. Though we will never know the exact moment a single cell of my DNA acquired a problem, the doctors feel my body has been under attack for months. As I look back, I see the many ways God has been preparing us for this -- He has truly gone before, and for that I must be grateful. Our darling baby boy, Gary Lee, was born November 29, 2005. All babies are a miracle, but I have since been told that our baby is a special miracle. He shouldn't be here, and had he made it into this world, I shouldn't have survived birth. I am so thankful for him! His smile and bright blue eyes have become one of the greatest blessings in my life. Following his birth, I had the typical run-down feeling for several weeks. My white blood count had been up at the time, and I also had a low iron count, but we blamed the white blood count on the trauma from birth (for those who don't know, we had a home birth and my labor progressed very slowly.) My oncologist said that it was quite appropriate at the time for us to think that was all the white blood count indicated. My iron count was back up in normal ranges by February, as I followed the steps my midwife had laid out for me when I was anemic during pregnancy. I am exceedingly grateful for the prenatal care I received from my midwife. I was able to develop so many healthy eating habits and learn more about my body. After about 6 weeks following his birth, I began to feel like I had some strength again. My husband had been feeling led for several months to put our house in Phoenix on the market to take advantage of the investment opportunities the booming housing market was providing. We took steps to sell the house and with the help of an excellent realtor, had an offer the day our home listed. We prayed about our next step, and both felt the Lord leading us back home (for me) to Missouri, as we would be able to eventually reinvest in real estate in Missouri rather than renting for an unknown length of time in Arizona. (The downside of the booming market there.) We loaded up our rental truck with the help of family and friends, and began the long drive late February 27th. My Grandpa graciously opened up his home to us to provide us a place to stay rent-free while we searched for a job & housing in Columbia, the city we had felt called to ever since we began considering relocation to Missouri. Since that time, the Lord provided the perfect job for my husband as an outside sales rep for TigerTech within the UM system. We located a house we both love outside of Columbia a few miles and decided on a one-year lease while we search for the place we want to spend the next several years, even possibly build.

With all changes comes the struggle of discouragement, I suppose. There have been many times over the last few months that we have greatly missed our friends, family and church in Arizona. Plus the more insignificant little things, such as mountain views, beautiful spring evenings, and the great malls! My discouragement grew when I discovered the cute little house we had leased for a year had a serious insect infestation, and consequently, a spider bit me sometime around my birthday (June 1st). I first noticed a red spot on my leg on the 4th, and it became apparent that it was most likely a brown recluse bite so I visited the local Urgent Care on the 6th. They sent me home with an antibiotic that I finished within the appointed 10 days, and the bite slowly, yet painfully, began the healing process. As days went by I became more and more discouraged, feeling unable to cope, fearful of things I used to enjoy, such as getting together with friends or even going out to church. Even a trip to Wal-Mart became a massive undertaking that almost seemed too much to bear, and if possible, I would just ask Brandon to take care of errands on his way home from work. I began feeling sick to my stomach all of the time, and my appetite was off. Ever since our move I had struggled with things like hair loss, canker sores in my mouth that took weeks to heal, viruses that we shared (consequences of moving to a new area) that my husband would be over in a day and I'd be fighting for a week. I always had something to blame it on, though, mostly hormones, since that's what everything is blamed on after you have baby and while you're still nursing. A few weeks ago I noticed Gary began waking up through the night to eat every 3-4 hours, something he had never done, and I felt that my milk supply was dropping and wondered if I may need to wean him or at least supplement with formula. I tried to eat and drink as much as possible, but I just felt like I couldn't keep up. I lost weight. My 5'9" lightweight frame has never been much above 112 pounds, but I soon found that I was down to 105, a significant weight loss for me. My size 2 clothing began to hang off of me, and I just thought I needed to start eating more and fought again with my lack of appetite. After I finished the antibiotic for my spider bite, I began to notice a lot of bruising, mostly on my legs. At first I thought I was just being clumsy. I love playing with Gary and often crawl around on the floor with him, and through the moving in, cleaning and unpacking process, figured I'd just banged myself up a little more than normal. I joked with Brandon that I must be the clumsiest person alive or have cancer or something. During the last week of June we were blessed with overnight guests for an evening, and I was unusually tired during their visit. A few days before I had finally opened up to my mom about how I had been feeling, and that I felt I may have post-partum depression, though I had the "inability to cope" feeling far more than depression. I told her I was planning to visit the doctor sometime soon, but due to Brandon's job and lack of sick leave currently, decided to put it off until July 17th, his next flex day (he works a lot of weekends currently). Mom offered to come up in the meantime and help me with Gary so I could go earlier, and I said I might. I don't like going to the doctor, and was beginning to just feel like some kind of hypochondriac and worried that they would all just think I was crazy and give me a pill to fix my problems. My husband had been asking me to schedule an appointment for sometime at this point. The bruising continued to worsen. I decided our new countertop stools were the most uncomfortable things in the world, not realizing that the pressure of sitting on them had left giant bruises on the back of my legs. I'm not sure when I first noticed the petechiae. It sort of looks like a rash, or tiny little broken capillaries. I noted on my blog that I had noticed them when I was first bitten, around the bite location, which I thought was totally normal. By June 30th, I had them on my upper arms, chest, legs, tops of my feet, pretty much a little everywhere. I called a friend of mine that day and opened up to her about how I'd been feeling, and she said I needed to go see a doctor about a possible thyroid problem. That seemed a more legitimate reason to see one than just for "I don't feel good and I'm scared to leave the house" so I decided I'd have my mom come up the next week and help me with a doctor visit. In the meantime, my husband was on a two-day business trip, and I called him complaining of more bruises and the petechiae rash, which was quickly worsening. I'd looked it up on WebMD and discovered a link between the petechiae and brown recluse bites, and it said in rare occasions it could cause hemolytic anemia. Anemia! There, that's it, I thought. I'd been anemic during pregnancy, and I remembered the wiped out feeling and even a tendency to bruise easily. Brandon told me to get into the ER that night, but I didn't want to call my mom and ruin her already busy weekend, so I said I'd just go to the doctor as early in the week as possibly. He reluctantly said o.k. When he got home from Kansas City the following day (July 1st), he took one look at me and said he was taking me in. I argued with him, and asked if he would just call the nurse line through the local doctor's office. My experience at Urgent Care for the initial bite was lacking in my opinion, and I didn't want to spend another copay being told it's just the bite and here, take this for ten more days. I'd rather just see a regular doctor the following week, someone I could also talk to about my thyroid.

The nurse line ended up transferring me to the head nurse in some department at the hospital. She said my symptoms didn't sound like an ER visit, but that I needed to go to Urgent Care that night, because something wasn't right, and it could be a delayed reaction to the medicine I took after the bite. So we headed there immediately, and I saw a doctor around 6:30. He seemed mildly concerned, said he would draw blood to check my levels and also my thyroid, since I went ahead and mentioned it. Since it was so close to closing time he said they probably wouldn't call me with the results until Sunday morning, possibly Monday, but that he would follow-up with me Monday morning himself. The visit went much better -- he said the spider bite actually looked like it was healing quite nicely, and even sent me home with a prescription for Flonase to help with my allergies. We drove home, pulled out some leftovers to eat, just sat down to relax and the phone rang. Not only was it Urgent Care, it was the doctor himself, telling me the preliminary blood work came back and it did not look good at all. He said it could just be a reaction to the meds like the nurse had said earlier, but that I needed to go to ER immediately, was not to wait in the waiting room for any length of time. When I asked if I should take my toothbrush and plan to stay overnight he said, "'ll be there for a while." Little did I know.

After a thorough exam in ER, the doctor said I would need to have a blood transfusion and receive extra platelets. (For those who may be interested, initially my white blood cell count was pushing 40, my iron (hemoglobin) was 8.2, lower than it ever was during pregnancy/post labor, and platelet count was 24.) They weren't sure at the time what the problem was, but I could tell people were acting concerned. They admitted me and took me to a room on the 4th floor, which I believe is where all the general sickies are. My ER doctor spent some time with me and said he had called in a hematologist to look at my results. There hadn't been one in, but he made sure of it because he wanted to check all the bases. Sometime around 2 in the morning I saw the hematologist, and heard the word leukemia for the first time. He said it could possibly be a problem related to the bite/medication, but that he wanted me to be aware it could be something much worse, so I wouldn't be shocked if they came back with that diagnosis in the morning. A few hours later, the hematologist returned and said the ER doctor had placed me in his care, and they would be moving me to the 5th floor, which I later found out was the Ellis Fischel Oncology ward. Sunday morning four doctors, two medical students and two nurses filed into my room, and I knew. They were led by the head oncologist, Dr. Perry. He told me they had reviewed my blood smears and at the time they knew I had acute leukemia, but would not be sure of the type until they performed a bone marrow biopsy. Due to the holiday weekend, they would be unable to perform the biopsy until Monday afternoon, and I most likely would not know the preliminary results until Wednesday. I don't think there is a way to put in writing how such a diagnosis hits you, I was silent except for a few questions and tears while they were in the room, afterwards I broke down in my husband's arms and we both sobbed. Somewhere in the midst of all of the emotions I had an overwhelming sense of peace. Ever since the Urgent Care doctor had called, the song "Blessed be Your Name" had been running through my head. "Blessed be Your name, when the path's marked with suffering, though there's pain in the offering, blessed be Your name." I told Brandon, "The Lord gives, and the Lord taketh away, blessed be the name of the Lord." In the midst of everything known and yet unknown, all I could know is that He had me. I wasn't anywhere I wasn't supposed to be, this was the path I had been called to, and He wouldn't give me more than I could bear.


J R Phillips said...

Words cannot express all my heart holds for you guys. You are all in my prayers.

Anonymous said...

We're so glad to see you have a blog so we can stay updated. You and your family have been in our hearts and prayers snce we found out.
Lam. 3:22&23
It is of the Lord's mercies that we are not consumed, because his compassions fail not. They are new every norning: great is thy

Isaiah 41:10
Fear thou not; for I am with thee: be not dismayey for I am thy God; yea, I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.
Much Love,
the McDonalds

Rachel Davis said...

I'm so glad to see this up here...I call my parents 20 times a day to see if there has been any news or updates, so this will be easier. :)

Love you so much.

Anonymous said...

I love you, precious girl. You are such an inspiration.

I miss you so much it hurts.


Anonymous said...

This is Amy's mom, Anita. Thank you so much for all the prayers you are offering up on Amy's behalf. It is such a privilege for me to be here serving her. She is a precious daughter and friend. I long to see the day when we can have pillow case races again. We were always very competitive to see who could get that pillow down in the case the fastest!! I have a request. If you would like to do something for Amy, please send a card to her here at the hospital. The address is on the first page. We would love to paper her walls with cards from all over. Thank you again and again. We have cried buckets of tears together but still know that our Lord is sovereign and cares for Amy more than we can ever know.
With love from our family,
Anita Martin

N said...

...I don't know you; linked to you through Abigail Hackman, but I am definitely praying for you. May He grant you peace that passes understanding.

~Naomi Johnson

Anonymous said...

Amy, you are constantly in my thoughts and I pray for you often during the day and night. I know the Lord is teaching me through your example. Thank you for sharing-

Much love,
Rachel Eldredge

Carrie said...

I, too, followed a link to read your story. And its an incredible one, written by an incredible God.

I'm going to bookmark your blog and pray for you daily. (I'm expecting a baby in October and my heart tugs for your budding new family!) Thank goodness God is good and He is gracious and faithful, eh?!!

-- Carrie Brownell

Carrie said...

I, too, followed a link to read your story. And its an incredible one, written by an incredible God.

I'm going to bookmark your blog and pray for you daily. (I'm expecting a baby in October and my heart tugs for your budding new family!) Thank goodness God is good and He is gracious and faithful, eh?!! I'll stand with you and yours in prayer.

-- Carrie Brownell

Anonymous said...

I am Rachel's cousin Amanda. I have so amny emotions running through me right now after reading your blog. You are truely an inspiration.

I just wanted to let you know that you are in my thoughts and prayers.

Ashley said...

Hi, you don't know me.
I'm a friend of Joanna Burks', and I've been praying for you. She called me to give me the blog address today and I went to it immediately.
What a beautiful, God-glorifying testimony you exhibit! I can only imagine how difficult this must be for you, and my heart is with you and your family.
Our God is good, and He works all things together for the good of those who love Him.

You are bringing amazing glory to Him.
God bless you,

Anonymous said...

Hi Amy,
my family and I are friends of Chad and Natacha and just wanted you to know that you and your family are in our prayers. Your strength and faith in God will carry you through this journey, and we will look forward to your updates. Stay strong and rest in his healing love.
with love and blessings
The weasts

Anonymous said...

Hi Amy! It's your second cousin Sarah Howson. I just want you to know that you are in my prayers. Your strength and faith is inspirational Amy. It sounds like God is truly working in and through you. I'm so glad you have this blog so others can be updated on how you're doing.

Lisa said...

Dear Amy,

This is Lisa Williams, your mothers friend. (We went out for sundays together.) I am sure you remember me now. :) I just read your "blog account" and must say that you are an inspiration to me. With your situation, and sudden change in life, I see total peace and JOY in your letter. What a blessing. My heart feels for you, your husband and little baby. We are praying for you all, and will continue to do so.

With our love,
Lisa and the Williams Family;
Chris, Hannah, Zachary, Joshua, Benjamin, and Samuel

Anonymous said...

Hi Amy,

I'm Earl Smith's daughter out in California. Our whole family is praying for you as you go through the deep waters with God. May He continue to sustain you. May you press into our Father and not turn away from Him during this time. God always has a plan. (Your baby is darling.)

Earline Howson

Anonymous said...

Amy, Brandon, Gary, and Family;

Thanks for the updates.
We are so very thankful for the progress and indeed do know the Lord's provision in this. You are on our minds most all the time and seek the Lord's comfort, strength and peace to each and all.

We Love You,
Don and Lilan

Anonymous said...

I am keeping you and brandon and the baby in my prayers Amy.
<3 Micha

Anonymous said...

What a testimony your words and life are to others! I just found this blog because a friend told me about it. We are praying for you and your family.

rach said...

Thank you for your example of an obedient heart. I am going through many emotions, being pregnant again after the loss of one baby and many birth defects of another.

Reading your blog, it hit me in the face.

"Be still and know I am God."

Wow. Just, wow.

Janice (5 Minutes for Mom) said...

I am here from Brenda's. After reading some of your recent posts, I went back here to read your story.

I can't imagine what you are going through. I will most definitely be praying for you and your family.

annb said...

Amy, I found your site through Annie's, and feel like I was led to you. Your son was born on my birthday, Nov 29 which I discovered on your first post. I am truly sorry to read about your diagnosis, but I also know that God is the ultimate healer and please know that I will be lifting you and your family before God in prayer.
I am a distributor for a produce called JuicePlus which is something I truly believe in. It is not a supplement and I would love to share the information with you if you would like any information. Please understand I am not trying to push anything on you, but know from the results of those who are using the products that the added nutrition in your diet can be very useful to keeping up your strength when you don't feel like eating. If you would like more information, please visit me at my site or you may email - also going through my site. said...

Dear Amy and Brandon,
Just came across your blog and my heart aches for you!! I know exactly how difficult it is to be going through this as my husband, Gino, was diagnosed with AML - M4 May 1998. There was even a mention that he could possibly have had M5. He had an allogeneic stem cell transplant as well (from his brother). He had a rocky road after that for quite a while. Watching him go through that was the most difficult and heart wrenching thing that I've ever had to go through. But he will be 9 years in remission on July 20th! His life is not the same as it was prior to his diagnosis but he is improving each year and is still here with me! Please know there are blessed endings to a horrible experience. Keep your faith and prayers and let your husband take care of you when you feel that you just can't go on! My thoughts and prayers are with you both! Please email me if you want...especially for encouragement!
Take Care