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.