In The Arms of His Savior

James W. Miller

7/1/1964 - 12/3/2009

Jim went to be with his Lord on Thursday night at 11:30 p.m. surrounded by his sons and me who showered him with love and singing. It is a comfort to know that he is in the presence of the Lord but we are overwhelmed with grief at his passing.

Funeral arrangements are as follows: Visitation will be held Saturday, December 5 from 6:00-8:00 pm, and Sunday, December 6 from 2:00-4:00 pm and 6:00-8:00 pm at McComb's Funeral Home, Covington Road, Fort Wayne, IN 46814.The funeral service will be held Monday, December 7 at 10:30 am with visitation one hour prior to the service at Emmanuel Community Church, 12222 US 24 West, Fort Wayne, IN 46814.

We continue to trust in our most powerful God for the days, months and years that lie ahead as we continue on without our loving husband and father. Thank you for all your love and support and for continually lifting us up before the Lord.

ICU

The doctors decided to treat Jim's systemic leukemia with more chemotherapy in an effort to bring down his white blood count. The thinking is that once the white blood count is down, they will be better able to clear his central nervous system. That treatment was begun on Sunday night. At 4:00 a.m. on Monday morning, I received a call from the hospital saying there was a change in Jim's status. Jim was experiencing shortness of breath and was quickly transferred to the ICU. After many tests, it has been determined that Jim has a blood infection.

Yesterday, the doctors sat down with Jim and I and explained how dire Jim's situation is. We were told how very sick he is and that he is not expected to live. We were given a 5% chance of him pulling through this. The doctor also told us that they would continue to treat Jim as they are "not in the habit of giving up." Among the many medications Jim is receiving, he is receiving antibiotics for the infection and chemotherapy for his leukemia.

We are understandably devastated by this news and our family and friends have surrounded us as we face the upcoming days. We thank God for His faithfulness and His goodness as we continue to ask for healing. He, alone, is in control of our situation, and we thank Him for his grace for each moment.

Ps. 10:17 O Lord, you hear the desire of the afflicted, you strengthen their heart. You will incline your ear ~

Thank you for continuing to lift us up before our Mighty God.

A New Plan

Today we found out that the lab results from the spinal fluid that was drawn off last Monday still shows there are blasts in Jim's central nervous system. Jim's doctor here in Fort Wayne has called Dr. Mineishi in Ann Arbor to consult with him about a new plan for Jim. They have not been able to connect yet so we don't know what the next steps will be for certain.

We would be grateful if you could pray with us for the doctors' wisdom at this time as they formulate a new treatment plan for Jim. We will update you when we learn more.

“I Didn’t Really Fall, I Just Slid.”

As I write this blog entry, I have the advantage of seeing how much better things are now compared to a couple days ago. Wednesday was a difficult day. My reserves were gone and even though we had news to share, I couldn't bring myself to write a blog post because I was so exhausted and hopeless. Jim scared me and things escalated to the point where we both felt we had more than what we could handle on our own. Jim had become weaker and weaker. Early Wednesday morning after midnight, Jim was having trouble sleeping. His own words were that he was "agitated." His mind was racing and he was restless. About 2:00 a.m., he got up to use the bathroom. I heard him kind of moan or cry out, and I jumped out of bed to check on him. He was slumped down straddling the toilet backward. He did not have the energy to stay on his feet. I called for Brad and we got Jim back on his feet and into bed. We realized that he knocked the toilet paper holder right out of the wall. I stayed awake for the next few hours watching over him. Early in the morning, I phoned Jim's doctor who recommended admission to the hospital. It was another dark day. We were both so tired and Jim was so weak. I began to think that we would never make it through this because Jim seemed to be going downhill so quickly. I was losing hope. There were lots of tears. Wednesday evening I was given this passage as encouragement.

Lamentations 3:21-25

Yet this I call to mind and therefore I have hope: Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The Lord is my portion; therefore I will wait on Him." The Lord is good to those whose hope is in Him, to the one who seeks Him: it is good to wait quietly for the salvation of the Lord.

What a difference a day makes. Jim received IV fluids and transfusions of both platelets and hemoglobin after his lab work was evaluated. Yesterday, after a Thanksgiving dinner with the boys, we went up to see Jim at the hospital. I was surprised to see how improved he was. He was much steadier on his feet and had color in his cheeks. He was able and wanting to have a conversation where just a day earlier, he would only answer with two word sentences because he didn't have the energy to talk. He was clearer minded today and his reflexes were quicker. When we were explaining the reason for his admission to a friend of ours at the hospital, he showed his personality when he said, "I didn't really fall, I just slid." Thankfully, that is true. He didn't fall or bump his head; he just slid down the wall and took out the toilet paper holder. I, of course, told him that we would now have to redecorate our bathroom since there are holes in the wall where the toilet paper holder was.

Jim and I had a great conversation last night about what our lives here on earth mean and how we impact others. We are very aware of the fact that this battle with leukemia isn't about us at all or whether we win the battle, but it is about what God is accomplishing through our situation. As we pray for complete healing and keep our eye on the goal of getting to U of M for the stem cell transplant, we are praying that God would accomplish His purpose. We continue to be thankful that even though emotionally we are up an down from one day to the next, God is always faithful and His great love and compassion never fail. He is our rock and the One who is holding us tightly through this storm.

Jim will undergo another chemo treatment today while he is at the hospital. Please pray that the spinal fluid results would continue to show improvement and that Jim would be able to tolerate the treatment. Chemo days are difficult for Jim but we know they are so necessary to clear his spinal fluid which moves us closer to transplant.

Here's how you can pray:

• Thank God with us that Jim is feeling so much better.
• Thank God for His great love for us.
• Pray that the way would be clear to go to U of M for stem cell transplant.
• Pray that Jim's central nervous system would be clear of all leukemia and that there wouldn't be any "hidden" leukemia cells that could cause relapse.
• Pray that Jim would be better able to tolerate the chemotherapy today and would feel a special presence and comfort from God.
• Pray for the boys and me as we continue each day under the stress of this disease.

Thank you for following us on this journey and uplifting us before our most powerful God.

These Are The Dark Days

Jim has been receiving chemotherapy through the reservoir that was implanted in his head roughly twice a week. Each time they administer chemo, they first draw off some spinal fluid and send it to the lab for analysis to see if there are still any abnormal cells. At the next treatment date, we find out if the last sample was positive or negative for leukemia cells.

Last Thursday, Jim received chemo and had a very rough time with the side effects. He spent the entire morning at the doctor’s office as they gave him anti-nausea medication through his PICC line in an effort to help get the vomiting under control. They considered admitting Jim to the hospital again if they couldn’t get the vomiting to stop. Thankfully, the medicine eventually worked, and he was able to avoid hospitalization. Today was the next scheduled treatment and in an effort to head off these symptoms and make Jim more comfortable, they ran IV fluids to hydrate Jim and also gave him anti-nausea medication prior to administering the chemo. After an entire morning of preparing him, they administered the chemo and almost immediately, Jim experienced severe vomiting that totally wiped him out. While I sat with him, we both cried at how difficult this is. There is nothing more difficult than what he is going though and seeing him so weak and sick. These are the dark days. They have warned us that the chemotherapy given at the time of the bone marrow transplant will be rough, so we are not sure what is in store, but I can tell you that we have never experienced anything more difficult on this journey than what we are going through right now.

I shared with my sister how I ride this roller coaster of emotions. Sometimes, I am so confident that all will turn out well, and other times, I end up in a heap of tears fearing what the future may hold. She compared it to when Peter walked on the water. At first, he trusted God and was fine walking on the water, and then he saw the waves and became afraid and began to sink. Our lives right now are filled with waves crashing all around us – the life or death kind of crashing waves. I have learned over the last few days to identify those feeling as the crashing waves that they are and then pray that God would help me navigate through the storm. And, God is so gracious to continue to be patient with me even when He has shown His mighty hand again and again in our situation. He gives the grace we need when we need it to handle any situation we find ourselves in.

Jim already has this concept down. As I watch him live through what must be the worst days of his life, I see repeatedly what a strong spiritual man he is. I was sharing my frustration with him about leukemia. I was saying that I wanted to have the spinal fluid come back clear so we would feel like we were winning the battle and not the leukemia winning. In his soft, weak voice, he calmly told me that it is not whether we are winning or the leukemia is winning, but rather if God’s purpose in all of this is being fulfilled. After a day of being sicker than I’ve ever seen him, he comes to the dinner table to lead our family in prayer and thanks God for the chemotherapy that has made him so very sick. He is an amazingly strong man, and I am so thankful to be married to him.

We have been praying specifically that the spinal fluid would come back clear and that God would have mercy on Jim as he undergoes these chemotherapy treatments. Today, the doctor told Jim that last Thursday’s lab results showed only one abnormal cell and, according to the doctor, it looked like it was dying. Jim shared that news with me while his eyes were closed and he was lying down recovering from being so sick. It was such good news to us, that we both wept – the ugly cry – but the crying out in thankfulness to God for His continued faithfulness to us.

Jim has a number of other tests scheduled this week that have to be completed before he can return to Ann Arbor. Once the doctors are convinced the spinal fluid is clear, we will get a call from the University of Michigan to find out when we can return. More good news: I talked with the nurse coordinator from U of M today and she confirmed that they were granted permission to use the same protocol for Jim as the clinical trial that just ended. We are looking forward to the next steps toward the stem cell transplant.

Here’s how you can pray:

* Thank God for His goodness and faithfulness to us and for his everlasting love.
* Please pray for strength for Jim. He is very weak and has tests every day except on the Thanksgiving holiday.
* Pray that he would be protected from any germs or illness and that his appetite would continue to be good.
* Pray that the way would be smooth for us to go to transplant. Pray that the central nervous system would be completely cleared of leukemia and that there wouldn’t be any “hidden” leukemia cells.
* Pray for complete healing of this disease.
* Pray that God would continue to show His hand in a mighty way and receive all the glory.

Thank you for continuing to uplift us before our Lord who is able to do more than we can ask or imagine. Our God is good and He is the faithful One.

Our Consultation in Ann Arbor

Yesterday we made the trip to the University of Michigan Comprehensive Cancer Center for an initial consultation. We were both a little nervous about this appointment but also anxious to meet the doctor and his team and get started. I had been praying that God would give us His peace and show us His hand in a mighty way. Jim’s brother, Dan, and his mother-in-law, Linda, (whom I will be staying with during Jim’s hospital stay) joined us for the appointment. Our dear friend, Pat, drove us up to Ann Arbor and back.

After checking in and getting Jim’s height, weight and vitals, we met Dr. Shin Mineishi. It did not take long for us to realize that we were in the presence of an expert in the field of blood and marrow transplantation. Dr. Mineishi is a researcher and principal investigator. He explained to us that he developed the protocol for a clinical study that had just closed at the University of Michigan. He was pleased to report to us that the results of that study show an increased percentage of long-term survival over the traditional method of stem cell transplantation when a patient is not in remission. This was good news to hear. The low percentage that the doctor at IU had given us is no longer the case under this protocol. The percentage of long-term survival is near the same percentage as transplantation in a patient with AML who is in remission. This protocol is being studied at U of M and in Houston, Texas. He explained that because they had received a call from our doctor at IU Medical Center and they knew we were coming, he submitted a request to see if the clinical study could be opened to accept Jim as the 46th patient in that study. That request was turned down. He then explained that he was seeking permission to treat Jim with the same protocol as the clinical study however Jim would not be a participant in that study. He was confident that permission would be granted to do that. The plan is to move forward assuming that permission will be granted.

They reviewed the procedure for transplantation and the possible complications that could arise. Jim would be in the hospital for 3 to 4 weeks and then would be required to stay in the Ann Arbor area for 100 days following discharge for follow-up care. Since Dan was also at this appointment, they began some of the testing that is required for the donor.

Jim will be able to go to transplant in about 2 to 3 weeks. During that time, two things need to be accomplished. The central nervous system needs to be cleared of leukemia. Jim will continue chemo treatments which will be given through the Ommaya reservoir in his head twice a week. Preliminary testing such as MUGA, lung function test, etc. will be done here in Fort Wayne. The doctors will keep a close eye on his peripheral blood and the number of blasts that are present in the blood. If the disease becomes more active, they will move to transplant more quickly.

As we drove home and digested all the information we had been given, we were awed again by how God is in control. We reminded ourselves that none of this is a surprise to Him and are comforted to know that only He is in full control of our situation – not the doctor at IU or even the doctor at U of M. Jim and I both have a renewed sense of hope. I could see as the day went on that Jim was more hopeful and eager to get started. At dinner on the way home, I saw a more relaxed Jim who was even able to laugh.

Here’s how you can pray:

* Pray that the chemotherapy would be effective and that Jim’s central nervous system would quickly clear of all leukemia.
* Pray for strength for Jim and that he would be protected from any germs or illness.
* Pray that Jim would continue to have a good appetite.
* Pray that we could get the required testing accomplished and the way would be smooth to move toward transplant.
* Pray that we would find child care for our children as Jim and I will be in Ann Arbor and for help in care giving for Jim while he is in Ann Arbor after discharge.
* Pray for complete healing of this disease.

Thank you once again for all your support – both in prayer and practical ways – as we continue this journey.

Discharged From The Hospital

Thank you, God, for doctors and nurses who care for Jim and can manage his pain and nausea so he is comfortable.

Thank you that someone figured out that cutting into Jim’s head would reduce his headaches.

Thank you for nurses who hug Jim and me when we leave and whisper in our ear that they are praying for us.

Thank you that Jim is upright and feeling better.

Thank you for friends who come by to visit.

Thank you for Brad who was a huge help this weekend, and who was so sweet and gentle with his mom when the tears came again.

Thank you for friends who provide hot yummy meals for my family so I don’t have to wonder what to make for dinner.

Thank you that Jim could join the family at dinnertime tonight and lead us in prayer.

Thank you for all those who have come week after week to blow our leaves.

Thank you for all the people who send cards and words of encouragement that mean so much.

Thank you for the text messages and phone calls from friends who continue to support us and check in on us every day.

Thank you for a friend who counts it a "privilege" to drive us to Ann Arbor tomorrow.

Thank you for friends who come at a moment’s notice to help Brad rotate the tires on our van and buy tires for his car.

Thank you for a friend who helps me put one foot in front of the other when I don’t know what to do next.

Thank you for both Jim’s family and my family who call to check in on us and pray for us.

Thank you for cell phones so that Jim could be part of John’s prayer service and be encouraged by someone who prayed for him.

Thank you that Dan is a perfect match and You planned it that way.

Jim's in the Hospital

Jim has been having an increasingly difficult time managing the side effects from the chemotherapy and lumbar punctures he has undergone. We went in for a doctor’s appointment on Thursday, and after consulting with the doctor from IU, Jim’s doctor made the decision to admit Jim to the hospital. He is there for two reasons. One is that they can better manage his pain and nausea with IV medications, they can keep him better hydrated with IVs and they can better monitor his need for platelets and hemoglobin. The other reason is that the doctor decided to place an Ommaya reservoir into Jim’s head. The Ommaya reservoir is a device that is implanted under the scalp. It allows chemotherapy to be given through the fluid around the spinal cord and brain. The chemo can go directly to where it is needed, and Jim can avoid the side effects of headaches that he gets from the lumbar punctures. Here's what he looks like now.

Jim has been somewhat uncomfortable and low on energy; however, we are thankful they are better able to manage his symptoms at the hospital. We are still scheduled to go to the University of Michigan on Tuesday. Jim’s doctor said we would give Jim a “tune up”, get him feeling better, and then discharge him in time for our consultation in Ann Arbor.

Here’s how you can pray:

- Pray for complete healing from this disease.
- Pray for encouragement for Jim. This is a very difficult time for him right now. He is not feeling well at all and has been somewhat discouraged.
- Pray that his central nervous system would be cleared of all leukemia.
- Pray for the doctors’ wisdom as we learn what our next steps will be at the University of Michigan.
- Pray for the boys and me as we continue this journey with Jim.
- Pray that we would see God’s hand work in a mighty way in our present circumstances.
- Pray that God would receive honor and glory as we continue to trust in Him.

Thank you, once again, for uplifting us before our God and Saviour.

These Things I Know

One of the things I find comfort in is recalling the attributes of God. These are things about God that are never changing. In both good times and difficult times, God is faithful and dependable. He is loving and calls me his child. He is full of mercy and peace. He is consistent and unflappable regardless of the circumstances we find ourselves in. He is all powerful and able to do more than we can ask or even imagine. He alone is in control and knows what is best for me, his child. He loves me more than I can understand. He is all-knowing and sees the big picture, when I only see the little snapshot of life that is before me now.

Yesterday, while Jim was at the hospital undergoing his lumbar puncture, I was home praying for him and listening to a CD of music that my cousin, Erin, put together and mailed to us. These are a collection of songs about God’s faithfulness – songs that Erin found comforting herself and wanted to share with us. As I listened to this music, I found myself taken aback by who God is. “All I have needed thy hand hath provided. Great is thy faithfulness.” "He's always been faithful to me."

There are many circumstances in my life where I have experienced God’s goodness and faithfulness. When the words “Down syndrome” were spoken to me about my youngest son, I thought my world was coming apart. Jim and I held on tight to each other and asked God to help up on this journey. Then we put one foot in front of the other. What we found out was there are so many hidden blessings in having a child with Down syndrome. As Jim lays on our couch, feeling as low as he can be, Kyle comes beside him and kisses Jim’s bald head and pats his shoulder. I see a tear fall from Jim’s eye as he is moved by Kyle’s tenderness and love.

When our middle son, Steven, was diagnosed 6 years ago with cystic fibrosis, I thought – Lord, isn’t this more than I can handle? Jim reminded me how we move forward – we put one foot in front of the other as trust in our God. What I found out was that God is in control, and that I can do all things through Christ who strengthens me. And God has blessed in what many would consider a difficult situation. What could have been a devastating illness for Steven has turned out not to be the case. Steven presents very mildly and is able to manage his health relatively easily. He is on less medication than the typical patient with CF and has never been hospitalized since his initial diagnosis. He has maintained excellent lung function over the past 6 years - usually over 100%. And he has grown in his faith as we trust God every step of the way.

We have looked to God to provide in other areas of our lives – from job changes to cities we’ve lived in to education for our children and more. As Jim and I were discussing this blog post he shared this with me. “I was taught God was the Great Provider as I was growing up. When my Dad was laid off for 2 ½ years while I was in high school and college, I experienced God as the Great provider. And 10 years from now, when I look back on this time, I will say, I knew God was the Great Provider.”

Yesterday we received a call from the University of Michigan. We are scheduled for a consultation next week Tuesday. We will meet with the doctor and a nurse coordinator much like when did when we traveled to IU Med Center. We are pleased to be moving forward in this process, however understandably a little nervous. But, as we continue to put one foot in front of the other, we will continue to trust God each step of the way. We are grateful for all of you who continue to lift us up in prayer. Our God is good, and He is the faithful one.

Update

We are thankful for all those who have been praying for us. These are very difficult days for our entire family. The stress is weighing heavy on us all. Jim continues to receive chemo on an out-patient basis each time he undergoes a lumbar puncture. These procedures are scheduled every Tuesday and Friday until the spinal fluid comes back clear. He is feeling the side effects of the chemo and has not been very comfortable over the past several days. His energy is low and he continues to have headaches, muscle aches and generally feels lousy. It has been difficult for me to manage our home and children and doctor appointments, etc. and to see Jim feeling so low. Steven and Kyle are both feeling better and have returned to school. Steven will follow-up with his pulmonologist tomorrow.

Jim had an appointment for a blood draw and to meet with the nurse practitioner yesterday. We were told that his spinal fluid is still not clear yet, and that we will continue with the lumbar punctures / chemotherapy until it is. I asked if it was troublesome to them that the spinal fluid wasn’t clear yet. The doctor sent the answer back that he has never seen the central nervous system NOT clear. We just need to remain patient and continue on with the procedures. This was comforting to us.

We have not heard from the University of Michigan yet, although the nurse coordinator from IU Med Center has contacted us and said he would follow up with U of M.

Here’s how your can pray:

- Pray that Jim would be completely healed of this disease.
- Pray for our children as they try to continue on with school and their activities all while seeing their Dad feeling so badly.
- Pray for strength and peace for me as I do my best to manage our family under these difficult circumstances. Each day weighs heavy on me.
- Pray that Jim’s central nervous system would clear and we could move on toward transplant.
- Pray that the way would be clear for us to go to the University of Michigan or wherever God wants Jim to be.
- Thank God for what He is doing in our lives, and pray that He would be glorified as we continue this battle.

Thank you again for all your cards and words of encouragement. Thank you for your prayers and meals and help to our family. Not a day goes by without tears being shed as we are finding ourselves in such a difficult place. We pray for God’s mercy that is new every morning and peace that passes all understanding. We continue to place our trust in Him.

A Day of Fasting and Prayer for Jim

Today is the day our church has set aside time to come together in prayer for Jim. We are also encouraged to fast over the lunch meal today or any other day this week to keep our focus on praying for Jim.

Jim underwent another lumbar puncture procedure yesterday and received chemotherapy in his central nervous system. He tolerated the procedure well but is complaining of a headache this morning which is common with this procedure. He is taking it easy today and drinking plenty of fluids. The next procedure will be done again on Friday.

On another note, our middle son, Steven, has been running a low grade fever since Sunday. We thought it might be related to his cystic fibrosis since low grade fevers are common with CF exacerbations. However, today our youngest son, Kyle, is also running a low grade fever. So, we may be dealing with some sort of virus. We are doing our best to keep the kids separated from Jim in different areas of our home.

Here's how you can pray:

• Please pray for complete healing of this disease.
• Pray that Jim would find relief from the headaches that are common with the lumbar puncture procedure.
• Pray that the chemotherapy would be effective in treating his central nervous system.
• Pray that Steven and Kyle would be restored to full health and that Jim would be protected from whatever they have.
• Pray for wisdom and strength for me as I manage our family under these circumstances.
• Pray that God would be glorified as we continue on this journey.

I cannot express how thankful we are to have the love and support and prayers of all our friends and family. There are days we feel like we are living in a nightmare from which we will never awaken. But then a strength and peace surround us, and we move forward step by step. We know our heavenly Father is with us with every step we take. Thank you for uplifting us before our powerful God who is able to do more that we can ask or imagine.

We Got The Phone Calls

We got the phone calls from both our doctor in Fort Wayne and the doctor at IU Med Center. The results of Jim's lumbar puncture show that he does have blasts in his spinal fluid. The first order of business is to get his spinal fluid cleared. Jim will need to have lumbar punctures twice a week until the spinal fluid is clear. This will begin tomorrow. They will draw some spinal fluid off and send it to be tested each time they do a lumbar puncture. They will replace it with chemotherapy to treat the leukemia. Once the spinal fluid is clear, they will treat it two more times to "seal the deal" and make sure they have it all. The doctors think this could take 2 to 2 1/2 weeks to accomplish. I asked if she felt confident they could get rid of the leukemia in the spinal fluid, and while she said there were no guarantees, she did say that she was fairly confident that this could be done.

While that is being done, she will contact the University of Michigan to make arrangements for the bone marrow transplant to be done there. The doctor said she wasn't able to connect with the contact person at U of M, but that she would continue to work on that. I asked if there was any chance that U of M would not accept us, and she assurred me that wasn't the case. They just need to make the contact.

So that's the plan. Jim and I are understandably nervous and have shed our tears, but we are ready to put one foot in front of the other and begin. Here is how you can pray:

- Pray that Jim would be able to tolerate the lumbar puncture procedures well and be protected from the headaches and nausea that often occur.
- Pray that the chemotherapy would be effective and that the spinal fluid would clear quickly.
- Pray that I would be able to arrange for child care and organize my home and provide a guide to whomever may come to help me with our children.
- Pray that our family would experience that peace that only God can give. This is an incredibly hard and scary road that we are on. Pray especially for our children as both Jim and I will be away from them for a while.
- Pray that Jim would be completely healed of this disease.
- Pray that God would receive the glory no matter what the outcome.

Thank you once again for all your love and care and support. Please continue to uplift us in prayer.

His Mercy Endures Forever

The news we received on Monday was devastating to us, and Jim and I have been struggling with what our future holds. We have been supported by some close friends who have come along side us to help us put one foot in front of the other. This has been an incredibly difficult time, but God is supplying all our needs right down to every last detail.

During Jim’s last hospital stay after he had his seizure, the doctors performed a lumbar puncture to determine if there were any abnormalities in his spinal fluid. The tests results then showed a small abnormality, however, the doctors were not concerned stating that given the fact that Jim had a seizure, those abnormalities could be expected. When the doctor at IU saw the report from that test, she told us that she would like the lumbar puncture to be repeated to confirm if there is any leukemia in the central nervous system. If there is, our understanding is that we would not be able to move toward transplant until that is treated. Last Wednesday, Jim underwent the lumbar puncture again, and we are still waiting for the doctor to let us know what the results are. Jim tolerated the procedure well, but has had some headaches since Wednesday which the doctors believe is due to the procedure. They are “positional” headaches meaning that when he lies flat on his back, he gets relief almost immediately. He is to take it easy for a few days to allow the puncture to heal properly.

Over these last few days, I have prayed through my tears that God would give us some encouragement. My prayer and the prayers of others on our behalf have been answered. On Thursday, Jim received a call from the nurse coordinator at IU Med Center. We were given news more than we could have even asked or imagined God would provide for us. Jim’s brother Dan is a full bone marrow match. Not only that, but our son, Brad, is a proper half match. If for any reason, Jim and Dan could not proceed with the bone marrow transplant, Brad could be used instead. We were also told last Monday that if we had a full sibling match, the transplant would not be able to be performed at IU Med Center because there are no open studies there for a full sibling match when a patient is not in remission. The doctor at IU will be calling other facilities to determine where the best facility would be to proceed to transplant. The nurse coordinator told Jim on Thursday that the University of Michigan has an open study and it might be possible that the transplant could be performed there. If we find that we could have this procedure done in Ann Arbor, it would be a huge answer to prayer. Before we moved to Fort Wayne, we lived in Novi, Michigan. Novi is about 45 minutes away from the University of Michigan. We would be going back to an area we are familiar with and where we still have many friends. And . . . a demonstration that God provides for every little detail is this: Jim’s brother Dan has in-laws, who are also friends of ours, who live only 20 minutes away from U of M. Not only would I be able to stay there while Jim is being treated, but for 4 weeks after Jim’s discharge, he will be required to stay within an hour’s drive of the hospital in case he would need to be treated for any complications. It is possible that Jim could stay with Dan’s in-laws during this time. And one more exciting thing that God has provided? Dan’s mother-in-law is a retired oncology nurse! How cool is that!

Thursday evening was another emotional time for us. We are blown away at how God is demonstrating His control of our situation. We continue to give him praise and honor for what He is doing in our lives. Jim was so excited he wanted to share our news with as many people as he could – friends who have been so good to us and faithful to pray for us. Jim’s parents and his brother, Dan, were on their way to Fort Wayne to visit us. Without letting me know, Jim found out what time they would arrive and then began making phone calls and asked a few friends to come to our home for an update. He gave them about a 2 hour notice. While he was doing that, I left the house to go to a parent teacher conference for our youngest son, Kyle (which went very well, by the way). When I returned, I found Jim and a friend of ours, setting up the house to prepare for company. There were 3 cakes on our kitchen table along with a couple gallons of ice cream. Soon after I came home, Jim’s parents and brother arrived. Then, the doorbell rang and to my surprise, people started streaming into my home. Jim had called a few people and asked them to contact even more people. Jim also went around to our neighbors and asked them to come. We estimated that we may have had 50 people in our living room that evening. Jim welcomed everyone and recounted our journey in this fight with leukemia and then asked us all to join him in praising God for His abundant goodness and mercy to us.

Today we find ourselves on an incredible emotional roller coaster. We do not know what the next steps will be as we continue to wait for our doctor’s phone call. We are confident that God is in control and that whatever the outcome, we will continue to trust in Him. Please continue to pray:

· That Jim would be completely healed of this disease.
· For wisdom for the doctors who are caring for Jim.
· For God’s peace that passes all understanding.
· That our Father in Heaven would be honored and glorified no matter what the outcome.

Difficult News to Hear

Yesterday, Jim and I made the trip down to IU Medical Center for our first appointment to learn about a bone marrow transplant. They drew Jim’s blood as they always do to determine where his blood counts are. A nurse coordinator then came in and explained the process and follow-up required for a bone marrow transplant. After a long discussion with this nurse, the doctor came in and we received some unexpected news. The blood test results showed 2% blasts in Jim’s blood. This is an indicator that the leukemia has returned. We were blindsided by this news.

Because Jim has active leukemia, our options have narrowed, the success rate is lower and time is of the essence. He is still able to move toward a bone marrow transplant, if a match is found. Kits for blood draws were sent by FedEx to both of his brothers to determine if either of them would be a match. Another kit was sent out to our son, Brad, to determine if he might be a half match which is another possibility. Once we receive the results of the cross typing of their blood samples, we will be able to determine what our next steps will be.

We would truly appreciate your prayers for us in this process as we have received this devastating news.

Please pray:

- That Jim would be completely healed of this disease.
- That the best bone marrow donor would be found quickly.
- For wisdom for the doctors as they formulate a new plan for us.
- For rest and a peace that only God can give in this time of uncertainty.

As unexpected as this news was to us, we know that it was not a surprise to God. We continue to trust Him as He holds us through this storm. This was such difficult news to hear and we are struggling with our emotions. Thank you for lifting us up before our Lord.

The last few days since Jim’s discharge from the hospital have been a bit of a respite from the battle with leukemia that we’re in, and we are grateful for that. Jim is feeling good and is happy to be home. He has been able to spend time with the kids and watched Steven’s marching band rehearsal on Saturday. He is feeling more like a part of our family again, pitching in to help with things around the house. It always amazes me how many little things break or need attention when he is in the hospital. He has the chance now to work on the to-do list a little before we head into the second phase of this journey.

Yesterday, we had a visit with Jim’s doctor. After his blood was drawn, the doctor told us how pleased he was with the recovery of Jim’s blood counts. The number we watched while he was in the hospital, anxious for discharge, was the anc (absolute neutrophil count). Remember waiting for it to get up to 500 in order for Jim to be discharged? The discharge still happened, but his anc was only 270. Yesterday, it was a whopping 700! All the other counts are on the rise as well.

Jim is no longer considered neutropenic and is able to eat fresh fruits and vegetables again. They were restricted from his diet because of the possibility of bacteria they might harbor. He will be able to be in public again by the weekend, but the doctor cautioned us to be careful in light of the flu season and the current H1N1 pandemic.

The doctor’s office also arranged the referral to IU Medical Center in Indianapolis. Our appointment is next Monday. We will be given more details about the bone marrow transplant at that appointment. For now, we intend to enjoy every day and live them to the fullest until Jim’s next admission.

He's Home

What a roller coaster we are on! Jim called me first this morning and sounded very discouraged. He got the numbers from his blood draw and found out that his anc had dropped from 360 to 270. He was so afraid that would mean he couldn't be discharged today and wanted to prepare me for that.

When the doctor did rounds, he reviewed all of Jim's records and decided that discharge today was appropriate even with the drop in his anc. Since Jim's follow-up appointment at the doctor's office isn't until next Wednesday, they decided to give him a transfusion of platelets to ensure that they stay at an acceptable level until he is checked again. By 6:00 this evening, we had him home. We enjoyed dinner together as a family - something that hasn't happened in a long time. It's hard to describe what it is like to have him back home after he's been away so long. It's like all is right with our world again.

Steven remained fever-free for almost the entire day yesterday and went back to school today. He is feeling better and his cough is less frequent. Brad is recovering well from his cold. The boys are keeping a distance from their Dad, and we are weaking masks and being very diligent in our hand washing to keep Jim safe. We are thankful for God's protection this far. Next week, we should find out more about the referral to IU Med Center for the bone marrow transplant. Thank you so much for all your prayers.

A Quote from Steven and Some Great News

"Okay, Mom. It's really time now for Dad to come home. It's been long enough. I miss my Dad."

I hear ya, kid. I hear ya! We are all missing Jim and are ready for him to come home.

After my last post when Jim's anc was 72, we were cautiously optimistic that his counts would continue to go up. The next day we were disappointed that his anc dropped to 35. That was a long way from the 500 we need for discharge. I fell into a bit of a slump and haven't updated the blog. Since Sunday, Jim's anc has risen, albeit, very slowly. After 35, his anc went to 54. The next day brought a number of 102. We began to see the end in sight, although the doctor was concerned that his counts weren't rising faster. There are a couple of reasons why it would take so long for his counts to rise. One is that Jim has undergone so much chemotherapy over the past year that it just takes longer for his counts to recover. The other reason is that there might be something preventing his counts from recovering. The doctors decided another bone marrow biopsy was in order to make sure everything was okay. The biopsy was done on Tuesday of this week. On Wednesday, Jim's anc rose to 154 and we waited for the results of the biopsy. Today, we got the best news of all. The bone marrow biopsy results shows there are no leukemia cells and that Jim is in remission. Jim's anc rose to 360 and the doctor gave Jim strict instructions not to run a fever today or get into any other trouble and he would consider discharge tomorrow. It's been 5 weeks today. A very long time.
On another note, Steven saw his doctor yesterday and had a good visit. We stopped in to see Jim before the appointment. Steven's lung function has improved and his cough isn't as frequent. He has gained weight over the last 2 weeks and looked and felt great. He finishes up his IV antibiotic today. We were hoping to have his PICC line pulled after his antibiotics were finished, but today Steven came home from school with a low grade fever and was not feeling well. After a call to the doctor, we were told that it's possible he may have picked up a virus. We will continue to monitor him and continue all medications as prescribed and see how he does. The doctor has decided to leave the PICC line in place for another 2 weeks in case we may need it for more medication. There is also a concern for Jim's health if he comes home to a household with sick kids. Brad is home for fall break and is also just getting over a cold.

Here's how you can pray:

• Please pray that Steven's medications would be effective and that he would be fever-free and feeling better.
• Pray that Brad would also recover quickly from his cold.
• Pray that when Jim is discharged, he would be able to remain separated from Steven and Brad and be protected from any illness.
• Pray for rest and strength for me. There have been times this past week that I questioned how much longer I could continue on with this. I was reminded again that I do not have to do this alone. My Savior is with me every step of the way and knows my fears and concerns. I experienced comfort in knowing that.
• Thank God with us that Jim's bone marrow biosy results show REMISSION!

This has been a long haul and we aren't finished yet. We are thankful for God's protection every step of the way and we trust Him with the next steps in Jim's treatment. Thank you again for all your prayers and support. Jim has appreciated all the cards and visits. Please continue to keep us in your prayers.

Today's Number

Jim gets his blood drawn every day to check his blood counts. Today's anc is 72. Thank you God for this encouraging number. We continue to wait on You.

A False Alarm

Apparently, it is now time for us to practice our patience and wait for God's timing. We were encouraged a couple days ago when Jim's anc was up to 76. Yesterday it fell to 30 and today it continues at 30. The doctor said that sometimes happens and that we just wait until the numbers move again. So, for now we are thankful that Jim is feeling good, and we will bide our time and wait.

The Numbers are Moving!

We are thankful that Jim has been having some very boring days at the hospital. Boring in that he feels good, but he is still not able to go home until his blood counts are higher. He has had many visitors including some friends from the Grand Rapids area who have come down to spend some time with him and encourage him.

So the big question is, "When can he come home?" The doctors are looking at his ANC or Absolute Neutrophil Count. To be discharged, that number needs to be up to 500. For the last 4 or 5 days, they have been in the 40's and not really moving anywhere. Today we were happy to hear that his ANC was up to 76. This is the first sign that Jim's body is beginning to produce its own blood cells. It's still a long way off from 500, but we remember from last year, that once the numbers start rising, they can double in just one day.

Many people have asked us how our boys are handling Jim's illness. Brad, our oldest, is studying at Bethel College and is doing very well. He has been able to come home occasionally on the weekends which has been a blessing to me. Not only is he a big help to me with Kyle, but I enjoy his company in our quiet house since Jim has been gone.

Steven continues to do well now that he is receiving IV antibiotics. He is feeling better and better with each passing day. We have completed one week of his antibiotics and have one more to go until he sees his doctor again to be reassessed. He is busy with marching band and has been able to keep his grades up as well.

Kyle is doing surprisingly well. Last year when Jim was diagnosed with leukemia, it hit Kyle the hardest. The stress of the situation with his Dad caused him to exhibit many unwanted behaviors both at school and at home. He even developed some OCD type symptoms as well. Many of these symptoms faded after Jim went in to remission last spring, but they have not totally gone away. This fall, even though Jim has been in the hospital for 4 weeks now, Kyle is having good days at school and at home. He has been cooperative and even has his sense of humor. Transitions from one activity to another can sometimes be difficult for Kyle, but lately that has not been a problem either. I truely believe that God will not give us more than what we can handle, and this may be an example of that.

When you think of us, here's how you can pray:

• Pray that Jim would not have any more seizures. He is still being followed by a neurologist and has some restrictions because of the one seizure he had.


• Pray that Jim's blood counts will continue to rise so he can be discharged and we can move onto the next step - the bone marrow transplant.


• Pray that our family would be protected from colds and flu and the H1N1 virus.

Thank you for all your prayers and concern for us. We have truely been blessed by so many who have surrounded us with love and prayers and support.

Fall Risk

Since Jim's seizure and subsequent stay in the ICU, he is now considered a "Fall Risk." He has padded bed rails and must ring for the nurse whenever he needs to get out of bed - even for the bathroom. If he doesn't ring for the nurse, he has a bed monitor that tells the nurses if he gets out of bed. He doesn't really like having such a close watch on him, but he understands the reasons for it.

There were a number of tests that were run to rule out any other possible reason for a seizure - a CT scan, EEG, MRI of his lower back, and a lumbar puncture. Not all the test results are back, but so far there is no indication that the seizure was the result of anything other than the antibiotic that Jim received. Jim is feeling good and resting comfortably. This is how I left him after my visit with him yesterday - sitting in the waiting room of the Oncology Unit working on his computer.

Steven is also doing well. He still has a bit of a cough, but is compliant in doing all of his treatments and medications. We're hopeful we'll see more improvement each day.

It's a New Day

Today began with a trip to the pulmonologist for Steven. After review of his records, lung function testing and examination, the doctor did, indeed, recommend IV antibiotics for Steven to help clear up his lungs. After I shared with the doctor our present situation with Jim, he decided that Steven could receive his treatment on an out-patient basis.

A PICC line was put in place and the first dose of antibiotics was given at the office. This evening, we had a visit from a home health care nurse - the same nurse that has taken care of Jim in the past. She trained both Steven and I to give the medication through the PICC line. Steven will receive this IV antibiotic three times a day for two weeks and will continue his regular medication and chest percussion therapy. He will be able to attend school and band. Even though he has a rigorous medication schedule, it will be much easier to continue on with our routine since he can receive all this as an out-patient.

Often the marching band schedule calls for Saturday contests that are held in other cities and require travel. If this were the case, it would be very difficult to administer this medication while on the road. Thankfully, the next two weeks find the Homestead band right here in Fort Wayne. We believe that God's timing is perfect and this was His plan. He has His hand on us every step of the way.

Jim had a good day. He continues to be sore from his bruises and takes medication to ease the pain. He underwent a few more tests today to make sure everything is okay. One test was an EEG. Steven and I stopped in to see Jim at lunchtime and this is what we saw - wires all over his head!


After his testing was completed, he was okayed to return to the Oncology Unit back to the same room he had before. We are hopeful and happy to go back to the boring hospital stay where we just wait for his counts to go up.

Thank you for following us as we continue to battle this disease. Thank you for your prayers and support. We are surrounded by so many who are helping us in so many ways. My employer who follows me to the hospital and stands with me while I hear difficult news. Those who drop everything and come when I ask them to pick Kyle up from school or be at my home when he gets off the bus. Those who come and mow our lawn and take care of our leaves and those who provide housecleaning so we don't have to think about those chores. Those who provide meals for us when I haven't even had a chance to think about what we would eat for dinner. You are truely a picture of His arms that are reaching around us to carry us through. We appreciate your love and care for us. Thank you.

I'll Praise You In This Storm

Today was the scariest most difficult day we have had since Jim was diagnosed with leukemia one year ago.

Jim has been doing well over the last few days and we have been waiting for his counts to rise so he can come home. Today, however, he experienced a new symptom - a tremor in his right arm. Jim called me to let me know that the doctor examined him and ordered a CT of his head to rule out any bleeding in his brain and a neurology consult. I received another call less than an hour later from a nurse telling me that Jim had experienced a seizure and was not doing well. She asked me to come to the hospital right away.

As I drove to the hospital, a million things went through my mind, not knowing what to expect when I got there. It was very scary. When I arrived, I was met by another nurse who gently took my hand and told me first that Jim was stable and awake and talking. Then she told me the entire story. Jim decided to take a shower. As he was drying off, he experienced some cramping of his right hand and his fingers curled inward. He was not feeling well at this point and pulled the cord to call the nurse. He doesn't remember anything after that. His nurse came right away and found him face down on the bathroom floor. She called a code and the nurses and doctors came in to get him back in bed and assess him. They believe he experienced a seizure and was out for about 15 minutes. Within 30 minutes, they had him in the ICU. He has some bumps and bruises from his fall, and since Jim's platelet count is so low, the plan was to have another CT scan done of his head to see if he experienced any bleeding. Both the first and the second CT scans were negative for any bleeding - a big sigh of relief. Then a neurologist reviewed his records and examined Jim. The neurologist believes the seizure was a side effect from an antibiotic he received. More tests were ordered to rule out any other causes, but the doctor seemed convinced that this antibiotic was the cause. It has been discontinued.

Jim is a little sore and bruised, but is resting comfortably this evening and receiving the best of care in the ICU. Once all the test results are back and he gets the okay from the doctor, he will be moved back to the Oncology Unit, probably in a day or so.

On another note, Steven, our middle son who has cystic fibrosis, has not been feeling well over the last few days. He has developed a cough and a stuffy nose. I called the doctor this morning and they have asked to see Steven in the office tomorrow morning. The nurse cautioned me that the pulmonologist may want to admit Steven for IV antibiotics which is sometimes done for patients with cystic fibrosis to treat lung infections. Thankfully, Steven presents mildly with cystic fibrosis. He was not diagnosed until he was 10 years old, and outside of his diagnosis, he has not had any hospital admissions. At least not until now, possibly.

As I reflect on this day, I am struck by how difficult this journey is. This is hard. I am so weary in the evenings and sometimes so overwhelmed by it all. At the same time, I see how the Lord continues to watch over and provide for us. I am so thankful that Jim was able to pull that cord so that help came right away. I am so thankful that the CT scans were negative. I am thankful that the seizure appears to have been caused by an antibiotic that can be discontinued. I am so thankful for the best nursing staff we could ever imagine. Not only did they do their very best for Jim, but they were gentle with me and gave me the time I needed to cry and absorb it all and answered all of my questions. We saw the look of concern on their faces. Many came up to see Jim and make sure he was okay before leaving when their shift ended. I know they read this blog and so I want to take a moment to give a shout out to them. They have become like part of our family, or maybe it's that we have become a part of theirs. They are wonderful caregivers that truely want the best for Jim. Thank you, thank you, thank you for taking such good care of Jim. Thank you for your kindness and concern for both of us. We count you all as a blessing from God. You all make this difficult journey a little more bearable.

We will continue to trust God as we find ourselves in the middle of this storm. We know He is all powerful and is able to do immeasurably more than we can ask or imagine.

Oh, I forgot to tell you - Jim began losing his hair a few days ago. He shaved his head this morning so he wouldn't have to deal with it anymore. This was such a difficult thing for me to see last year. Today it seemed pretty minor.

Thank You For Your Prayers

By Saturday, Jim’s temperature had returned to normal, although he was a little wiped out from the fever and was not at full strength yet. His chest x-ray came back clear and blood cultures that were done were also clear. A different antibiotic was given and Jim was feeling much better by Saturday evening. We breathed a sigh of relief that things resolved so quickly. Thank you for your prayers.

Jim’s brother, John, flew in from Virginia to see his brother. They spent Saturday together watching the football game. Later on Saturday, John went with me to Mishawaka to meet up with Brad and some of his friends, and we all went to the band contest where Steven was participating. We’re proud to say Homestead took first place with an awesome performance. It was so nice for me to spend time with both Brad and Steven. And, what a blessing to be able to spend some one-on-one time with my brother-in-law as we traveled to Mishawaka and back. I am blessed to have married into such a wonderful family. We all enjoyed our time with John and wish he could have stayed longer. Another blessing to count - and wonderful and supportive family.

Fever

Jim has been running a low grade fever on and off over the last few days - something that could be related to the blood products he is receiving. Today, his temperature spiked to 101 degrees, and he is a little more uncomfortable. The doctor ordered a chest x-ray and began antibiotics and has given Tylenol for the fever. With Jim's white blood count being so low, it is not unusual that antibiotics might be needed. Even so, please pray that the medications Jim is receiving would be effective and his temperature would return to normal, and that Jim would be back to feeling better. Jim's brother, John, is coming into town tonight and will be able to spend some time with Jim tomorrow. Hopefully, that will be some more good medicine for Jim - watching football with his brother!

An Optimistic Doctor

Jim is seen daily by the doctor in the oncology practice that does rounds at the hospital for that week. Yesterday, his own doctor also visited him to have a chat and give him some encouragement. Jim’s doctor is certain that the problem he had with cellulitis was caused by the leukemia and not necessarily caused by a bacterial infection. He went on to explain that leukemia can attack the soft tissues. This would explain the swelling in Jim’s legs as well as the swelling that occurred in his right arm when he was admitted both last year and currently. What that means is that there is only one illness to treat and not other complicating problems as well, which is very good news.

He also talked to Jim about the bone marrow transplant. Very interestingly, once a donor is identified, one of the ways the donation is done is through a series of blood draws. The donor is given a shot that increases their white blood count and produces stem cells. Over a period of days, blood is given and the stem cells are then separated from the rest of the blood. Those stem cells are what Jim will receive, much like a transfusion of platelets or hemoglobin that he currently receives. If this is indeed the way that Jim’s transplant will occur, it is obviously much easier for the donor to tolerate. The doctor was also very encouraging to tell Jim that a large percentage of patients who have bone marrow transplants are long term survivors.

Jim is doing great. Other than feeling a little worn out, he is feeling well. He is beginning to have some mild mouth sores but has been taking medicine to help with that. He remains optimistic and pleasant to be around. The doctor predicted possibly another 10 days or so in the hospital. By that time, his counts should begin to rise. Once it is determined that he is in remission, he will be referred to IU Med Center to begin the process for the bone marrow transplant.

It was a good day. We are once again encouraged and thankful that Jim is receiving such wonderful care by both the doctors and nurses.

The Last Day of Chemo

After five days of three different kinds of chemotherapy drugs, the last bag of the last drug was hung tonight. Jim has been feeling remarkable well. It seems he has reaped the benefits of the drugs but not the side effects . . . yet. His blood counts are all low, and he is watched closely for when transfusions are necessary. Now it’s a waiting game – waiting for Jim to generate bone marrow again that hopefully will not contain leukemia cells. This could take 2 to 3 weeks. So for now he waits as an inpatient in the hospital. He sometimes gets a little bored and loves the visitors he has. We count it as a special gift that since he has to spend this time in the hospital, he can do it during football season. Close friends, who are almost like family, picked up our son, Steven, last night, and they all surprised Jim by coming up to watch Monday Night Football with him. I was on the phone with Jim when they arrived, and it was sweet to hear the surprise and happiness in his voice to have friends join him for the football game.

Since his counts are so low, visitors are asked to wear a mask while visiting and to visit by phone if they have a cold or other respiratory illness. Jim’s diet is now restricted to cooked foods – no fresh fruits or vegetables since they might carry bacteria. He is also not allowed any fresh flowers or plants for the same reason.

Jim has a remarkable optimism and peace about the circumstance we find ourselves in. He continues to uplift and encourage me and those who visit him. We recognize this as answered prayer and thank God for the peace, comfort and mercy He gives us. And, we are trusting Him for the outcome.

As before, we find ourselves surrounded by people who are reaching out to bless us. So many are helping us with practical things – food, lawn care, housekeeping, and childcare. We continue to be amazed at the selflessness of those around us. Thank you for your love and care for us.

Please continue to pray that Jim would go into remission quickly and be completely healed of this disease.

Prayers Are Already Being Answered

Chemotherapy began yesterday with three different drugs being administered. We are reminded again how powerful these drugs are as we were given an explanation of each one with the side effects that may accompany them. Believe it or not, one drug may temporarily turn the whites of Jim’s eyes blue! These three drugs will be given every day for 5 days. The doctor seemed confident that he would be able to get Jim in remission quickly. If Jim achieves remission, he will then be referred to IU Med Center for a bone marrow transplant.

A few people have asked if they could be tested to see if they are a match to donate bone marrow. We were told that the best chance for a match would be with Jim’s siblings and then possibly other family members. Jim has two brothers who have both agreed to be tested to determine if they would be a match for Jim. If they are not a match, we will then be given the criteria to see who would qualify to be tested as a bone marrow donor. Please pray that Jim would go into remission quickly.

The news of Jim’s relapse has hit us hard. The last few days have been difficult for us. However, already I can see prayers are being answered. Jim was feeling better today and sat in a chair most of the day instead of being in bed. His attitude is positive and he is good-natured. His peace about this situation helps to calm me as well. I also realize again what a man of faith he is and that encourages me look toward his source of strength as well. We were given a devotional book and together we read the entry for September 10, the day we were given this horrible news. It refers to Paul who in 2 Cor. 4:8-9 says, “’We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed.’ We can’t attribute Paul’s inner perseverance to any other source than the Holy Spirit.” The devotional goes on to say, “No matter how difficult or discouraging our own circumstances become, we have the very same Spirit. If we’re hindered, we don’t have to be frustrated. If we’re puzzled, we don’t have to be in despair. If we’re persecuted, we don’t have to face it alone. If we’re dying from a physical disease, we can be alive in heart and spirit. Our outer person might be exhausted and hard-pressed, but we have the assurance that our inner self is being renewed with fresh strength daily from the Holy Spirit. (2 Cor. 4:16) Please pray that we will continually seek God's strength and peace in this situation.

Brad came home from college to see his dad this weekend. Here is a picture from that visit.

Difficult News

September 29, 2009 is the one year anniversary of, my husband, Jim’s diagnosis of Acute Myeloid Leukemia. As that date drew closer, I was afraid it would bring back bad memories of a difficult time in our lives. Instead of recalling that date with dread, I was planning to have a big party and invite all our family and friends to celebrate Jim’s life and what he means to us to mark that date with celebration.

It is with a heavy heart and much disappointment that I need to tell you that this celebration will not be occurring this year. We recently found out that Jim has relapsed and his leukemia is back. We have cried all the tears we can cry and have just been so very sad at this news, wondering if and how we would be able to fight this battle yet again.

Here’s the background: On August 20, the day before we left to take Brad to college, Jim showed me a discolored swollen area of his leg which looked like the cellulitis (an infection of the deep tissues of the leg) that he had prior to his diagnosis a year ago. He saw his doctor the following morning, was given an antibiotic and met up with us at Bethel College to help get Brad settled. He seemed to be doing fine for the next week until August 27 when he came home from work with a fever and the same symptoms in the other leg. We made a trip to the Emergency Room that evening, and Jim’s doctor decided to admit him for IV antibiotics. The cellulitis resolved quickly but the hospital stay was complicated by a pneumonia shot that was given to Jim. His arm, around the site of the shot, became red and swollen and he continued to run a fever which was attributed to a bad reaction to this shot. We were told at that time that this did not indicate that the leukemia had returned. Rather, since Jim’s blood counts were lower due to the chemotherapy he had received a few weeks earlier as part of the clinical trial he is participating in, it was more likely that he picked up this infection and was not able to fight it off as easily. On September 8, Jim was scheduled to have chemotherapy again for the week. It is routine to do a blood draw before giving chemotherapy. This time, the blood draw showed some abnormalities in his counts. The doctor suspected then that Jim had relapsed and cancelled the chemotherapy and scheduled Jim for a bone marrow biopsy which would confirm if the leukemia had returned. We met with the doctor today and received the bad news that Jim had indeed relapsed. The doctor gave us a new plan of action and admitted Jim this evening to prepare for the chemotherapy that will be administered tomorrow.

This has understandably been a difficult week for us. We began our prayers on our knees with the only word we could utter before God and that was, “Help!” Through our tears we asked again for those things that our Lord has provided for us before - comfort, strength, mercy, and His peace that passes all understanding, and God’s healing touch. And now we ask again for your prayers for Jim as well. The recommendation this time is for a bone marrow transplant which requires that the cancer be in remission. Please pray that Jim’s cancer would go into remission quickly so we can move forward to the next step in the process. Pray also that Jim would maintain a positive attitude and not struggle with depression. Please pray for our family as we face this battle again one year later.

A New Beginning

With the season of spring upon us, we are encouraged and look forward to a new time in our lives; a time that includes renewal, new hope and a new beginning. As we reflect back over the last six months, we are awed at how the Lord has worked in our lives. From those early, dark days of a frightening and horrifying diagnosis to the last few weeks of hearing the word “remission”, anticipating spring and a new beginning in our lives, we have seen the hand of God over and over again. We have learned to trust in Him on a whole different level. We have learned the lessons of patience as we waited on Him to provide. We have experienced His great love for us in so many ways. Our family has been drawn closer together as we weathered the effects of this illness and trusted in God for his goodness to us. We have been overwhelmed by those people who were sent our way to help us through this ordeal in so many practical ways, from providing meals and child care to help with yard work and housework. We have a new sense of compassion for those in difficult times and have been given wonderful examples of how to help others. The number of people who interceded on our behalf was amazing, and it is difficult to describe the encouragement that brought us. Thank you for all your support and care.

Over the last few Sundays at church, we have been studying the life of David, “a man after God’s own heart.” Just as David fought the giant, Goliath, we have giants in our lives that we must also fight. They might be things such as addictions, loneliness, grief or fear. In fighting our giants, we were reminded that we need to put forth effort and action, but we must wholly lean on God for courage, and His completion in killing our giants. In preparation for a Sunday service, Jim was asked if he would be willing to share with our congregation, through videotape, how he handled his fears as he faced the diagnosis of Acute Myeloid Leukemia. If you would like to hear that sermon, you can find it here: http://www.emmanuelcommunity.org/resources.html. The title of the sermon is "The People of the Battle" dated March 22, 2009. As a closing post to this blog, we want to share Jim’s testimony with you which was presented at the end of that sermon.

The Test Results Are In

We received the call that all of Jim’s test results are in and all showed normal results. Please join us in the celebration of the words we have been waiting to hear, “You are 100% in remission!” We have been emotionally moved since this phone call with many tears of joy as we begin to share this news. We have shared many hugs and feel like our feet still aren’t quite on the ground. And, we are enjoying every second of it!

This is the end of Jim’s treatment protocol. However, he agreed to participate in a clinic trial of the known chemotherapy drug, Decitabine. This clinical trial will study the role that this drug has in preventing relapse in patients with AML who are in remission. Decitabine will be given by IV infusion over 1 hour for five consecutive days, every 6 weeks. Each 6 week period is considered a cycle. Treatment will continue for a total of 8 cycles. We have been told that Jim should be able to receive this treatment and then continue on to work. There shouldn’t be any of the typical chemotherapy side-effects of vomiting, hair loss, lowered blood counts etc. We are looking at this as a maintenance phase of treatment. This phase begins for Jim on Monday, March 23.

We want to thank you again for your interest in following us on this journey. We continue to be overwhelmed by the love and support we have received from so many. There are not adequate words to express our thanks to you for all your prayers. God has been faithful to us every step of the way, and we give the praise and glory to Him for this wonderful outcome. Watch in the next week or so for a final post to this blog as we reflect on this journey and God’s goodness to us.

Bone Marrow Biopsy

The week really went well before Jim went in for his biopsy. He didn't mention anything to me about feeling anxious about the procedure. I think now that he is working, it helps occupy his mind with other things. Right before the procedure, however, Jim called me and said his stomach was in knots. It's just never easy. The doctor gave him some Ativan to help calm him. The procedure was somewhat difficult. The needle bent as they tried to insert it to draw out the bone marrow. The good news is that Jim has strong bones. The bad news was that he had to be poked again. Jim suggested they put handlebars on the bed he was lying on so he could grip something as he braced for the pain. The joke he tells is that it was all good. He "took it lying down!" After the procedure was over, we returned home where he immediately asked for morphine to help ease the pain. We ate a little dinner which did not sit well with Jim. The morphine may have upset his stomach a bit, and he became sick and laid low the rest of the night. Over the last day or so, he only has pain at the incision site when he moves a certain way.

The next step is an appointment on Monday for an EKG, chest x-ray and ultrasound of his heart. This is a follow-up procedure to the chemotherapy treatment to determine if any damage was done to his heart by the chemo. We are hoping for a good result from those tests as Jim has not exhibited any symptoms related to his heart at all. And we continue to wait (patiently) for the results of the bone marrow biopsy.

Thanks again for following us on this journey. We appreciate your love and support.

A Few More Steps in the Right Direction

Jim's first week at work went well. He works only half days now for the month of March which seems to be about right for him. He is tired by the end of the day. Last Friday, when he saw his doctor, he found that most of his blood counts are just below the low end of the normal range. Here's the data: Jim's platelets - 149,000; Normal range is 150,000 to 450,000. They were as low as 3,000 after chemotherapy when spontaneous bruising occurred. Jim's hemoglobin: 9.9; Normal range for men is 14 to 17. Jim's white blood count: 4.4; Normal range is 4.5 to 11. The hemoglobin has been the slowest to rise which is why Jim tends to tire out easily.

At the beginning of each new year, instead of coming up with resolutions that I won't keep, I choose one little word that I want to focus on for the year. This year, I chose the word, "renew." In light of Jim's fight with leukemia, we know things will never be the same normal we had before his diagnosis. During his treatment, we had a "new normal". But this year, we are looking forward to a "new beginning". Here are some of examples of the "new beginning" we are starting to see:

Last Friday, Jim's PIC line was removed. This is the line that has been in for months at a time through which he receives medication, chemotherapy and from which the nurses draw blood. Each day, it was my job to tape plastic over it before Jim could shower. Now he is free of all that!

Another sign of a new beginning is that Jim is presently not on any medication. None! Remember this picture?

This is how my bathroom counter looks now.

Obviously, we are thankful for all the medication that Jim was able to take to treat this illness and also to help him feel more comfortable from the nasty side effects of chemotherapy. But, it is refreshing to have our bathroom clear of all those medications. A new beginning.

The other news we'd like to share with you is that Jim will be undergoing a bone marrow biopsy which is scheduled for this Thursday, March 12 at 2:00. This is the test that will determine is there is any leukemia present in Jim's bone marrow. If not, he will be declared in remission.

We are grateful for all of you who have followed us on this journey and have helped to meet our needs and lifted us up in prayer. Again, I would ask for your prayers as Jim undergoes this biopsy procedure on Thursday. He has had bone marrow biopsies three times before and tells me they are painful even though anesthesia is given. Jim has been very anxious each time he has undergone this procedure. Please pray that Jim would experience a calm and God's peace that passes all understanding as he faces this procedure. Our God is good and we are careful to give Him the praise.

It sometimes takes up to a week before the results of the biopsy are known- always a long week for us. We'll let you know as soon as we know. Thanks again for all your prayers.