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.