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.