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.