More Than We Can Ask or Imagine

About a week before Jim was discharged from the hospital, Steven and I were guessing when Jim might be released. Steven wondered if his Dad might be able to come home in time to go to ISSMA State Finals in Indianapolis for Marching Band with us on November 1st. I told him that even if he was released by that time, I was sure his Dad wouldn’t be able to go to State because, with low blood counts, he wouldn’t be allowed to be in a crowd of people. I didn’t want to disappoint Steven, but I didn’t want him to have any false hopes either.

Today, Jim saw the nurse practitioner at his doctor’s office. He blood was drawn and all his counts were at a normal level. All diet restrictions are lifted, and there is no longer a need for him to wear a mask. He is also allowed out in public. He asked if that meant he could go to Lucas Oil Stadium in Indy for State Finals, and the answer was yes! We were so happy we cried. Those of you who are not familiar with the band program may not quite understand this, but THIS IS BIG. Our kids work so hard in band and going to State Finals is the ultimate reward. The entire time Jim was in hospital, we were certain that he would not be able to attend State Finals. Ephesians 3:20 immediately came to mind. “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” This is truly a gift and we are careful to give the praise and glory to God.

Jim will return to the doctor’s office on Monday for his bone marrow biopsy. His next round of chemotherapy is scheduled for Monday, November 10 when he will be admitted again to the hospital. If the results of the bone marrow biopsy on Monday are good, Jim will start the Consolidation Phase on November 10. If leukemia cells are found in his bone marrow, Jim will then repeat the first phase again, called Reinduction.

Please thank God with us for the good results so far and for the gift of being together as a family at State Finals. Also, continue to pray that the bone marrow biopsy would show no leukemic cells and that Jim would be declared in early remission.

We would also like to thank you for your prayers for Kyle. We have seen a wonderful positive change in his behavior as he has become more settled with his Dad being home. Please continue to pray for him as we will have many weeks ahead with Jim being in and out of the hospital. Thank you for lifting us up before the Lord.

It’s All About the Numbers

We are learning more about blood counts as we wait for Jim’s to rise. We were taught about “anc” or absolute neutrophil count. There is a formula having to do with “segs” and “bands” and the white blood cell count that determines the “anc”. Jim was told his anc level needed to be at 500 in order to be discharged. On Saturday it was 36. On Sunday, it was 66. On Monday, it rose to 238. I thought maybe by Wednesday, he would be able to come home. To our surprise, Jim’s doctor decided to discharge him on Monday with an anc level of only 238. His IV’s had already been removed, and the doctor said he could either sit around at the hospital and wait for his numbers to go up or sit at home and wait for his numbers to go up. So discharge it was!

I can’t even explain how wonderful it is to have Jim home. Our whole family felt a sense of being settled and a feeling of having things right again. Each of the boys told me on different occasions how nice it was to have their Dad home and how much they missed him when he was in the hospital. It was 4 weeks to the day. That’s a long hospital stay.

Jim will be seen by a home health care nurse. On Thursday, he will have his blood drawn to check his levels again. Once his levels are back to normal (not sure how long that will take), another bone marrow biopsy will be performed. They will check to see if there are any leukemic cells found while he has a normal cell count. If none are found, he will be declared in early remission.

Thank you for your concern for Jim and our family. Please continue to pray that Jim would go into early remission and be completely healed of this disease. We would also appreciate your prayers for our son, Kyle. This has been a difficult situation for him and we have having to deal with some unwanted behaviors. Pray for Jim and I and those around Kyle who work with him to have wisdom to know how to best help him and give him the proper support he needs during this time.

Oh, one more thing. Just gotta say it again. We are so happy to have Jim home!

We've Got News!

He's home!

The Blessing of Visitors

Last weekend, Jim’s brother, Dan, and his family came down from Grand Rapids to see Brad and Steven play in the marching band and to visit Jim. The visit became better and better when they delivered a letter to Jim from our 7-year-old nephew, Jeffrey. Jeffrey still uses “best guess” spelling, and we wanted to share his touching note with you. It is an illustration of the strength that even a child can draw from our Lord and use it to encourage others. Click on the picture to see it larger.

Lately, since Jim has been feeling well, chatting with visitors has become a special blessing to him. Today he was surprised to have a dear friend and former youth pastor, Bill Bennett, make a special trip down to Fort Wayne from Grand Rapids to visit. Bill and his wife, Sandy, were the Master and Mistress of Ceremonies at our wedding. This is a friendship that has lasted through the years, and these are people who have shared both our ups and downs with us. Even though years go by without us seeing them, we still share that special bond. It reminds me of the lyrics from a song – “We’ll keep you close as always. . . Friends are friends forever when the Lord’s the Lord of them. A lifetime’s not to long to live as friends.” It’s the tie that binds. Thank you to all who are able to visit. It is truly an encouragement to Jim, and a special blessing he is receiving as relationships are deepening.

We are still waiting for Jim’s blood counts to go up. His platelets continue to be in the normal range. Hemoglobin is on the low end but acceptable for discharge. His white blood count is slowly rising – from 600 on Friday to 900 on Saturday to 1100 today. Normal WBC is anywhere between 4500 and 11,000. Please continue to pray that Jim’s counts would rise.

Want To See Him Bald?

Platelets are in the normal range. Still waiting for the other counts to go up. Doesn’t he look good?

More Than Just A Band

Last Sunday afternoon, the Homestead Spartan Alliance Band Manager, Becca Blevins, gathered 5 other families from our subdivision and came over to blow our leaves and clean out our gutters. Once again, I was overwhelmed by the number of people who are surrounding us with love and care. We have always been impressed with the band program and the commitment of the directors, staff, students and parents. Our kids have learned so much more than music in this program - life lessons like leadership, dedication, commitment, hard work and team work. But this band has become more than a band – they have become like family. And they definitely hold each other up through tough times. From young kids up through the adults, here are a few pictures of the crew that came to help us.

Jim had a good day today. He is dedicated to getting his walks in to build up his strength and stamina and continues to have a positive attitude. The doctor reported that his blood work shows that he is producing something called monocytes which are a precursor to producing white blood cells – so that is good.

Kyle, Steven and I were able to visit Jim this evening. I showed Kyle the book I made for him first about Jim losing his hair which I think did help to prepare him a little. He didn’t like to touch Jim’s head but he was full of hugs for his Dad. When we left, Kyle gave Jim a kiss right on Jim’s mask – so sweet to see. It was good medicine for both father and son.

Further Clarification

While we are very happy that so far the blood tests and bone marrow biopsy have shown no leukemic cells, we’ve been reminded again that Jim is not out of the woods yet. They are still not able to say the Induction Phase of chemotherapy was successful. Jim’s doctor explained that he is “hypocellular” meaning Jim’s body is not producing enough bone marrow cells. When his body is only producing a few cells and no bad cells are found, that is good. However, they need to see Jim producing more cells. Then if no leukemic cells are found, they would consider the Induction Phase successful.

Jim is doing very well and the doctors are pleased. He continues to receive visitors and enjoys each and every one that stops by to see him. His white blood count continues to be low – yesterday at 300 and today at 600. He is eating well and goes for 2 or 3 walks a day. A big blessing is that his spirits are high. He has a positive outlook, and many have commented to me that Jim is a testimony, and that it is obvious that his faith in God, which is interwoven into his very being, is where he draws his strength and peace.

We thank you again for your interest and for your prayers. Please pray:

1. That Jim would stay clear of any infection.
2. That Jim’s blood counts would go up without any leukemic cells.
3. For complete healing of this disease.

We have one other concern for which we would appreciate your prayers. Please pray for our youngest son, Kyle. Kyle was born with Down syndrome and although he knows that his Dad is in the hospital and is “sick,” we’re not sure how much he grasps the seriousness of Jim’s illness. I have been taking Kyle up to see his Dad periodically, but he hasn’t seen Jim since much of his hair has fallen out. I was not sure how to prepare Kyle for this. It was suggested to me to make a social story for him to explain that his Dad doesn’t have much hair. I am working on a book for Kyle that will show people with different hair styles and people without hair (i.e. athletes, those who have shaved their heads, etc. I will probably include Larry the Cucumber who is featured in a Silly Song about not having hair). A friend, who is a graphic artist, took a picture of Jim and photoshopped it to take away his hair. I will then include a page about Jim losing his hair. Please pray that this would help to prepare Kyle and that he would have a sense of understanding and peace and not of fear.

Thank you for interceding on our behalf.

Proud Parents

While we are proud of all of our children, Friday night we had the opportunity to honor our son, Brad. It was Senior Night at Homestead High School where all the seniors were recognized and honored. We were sad and disappointed when Jim got sick, and we realized he would not be able to attend this function with Brad. I escorted Brad across the football field while our names, including Jim’s, were announced. Steven was in the band while Kyle sat with Jim’s parents in the stands along with Jim’s brother, Dan, his wife, Anna, and their children. They were our cheering section. There was also a banquet after the football game that Brad, Steven and I attended, where each senior in the marching band was honored. Brad’s band director had some very nice things to say about Brad and how he always gives his best at everything his does. I wanted to take this space on the blog to give a shout out to Brad.

Brad, you are growing into such as handsome young man with wonderful talents and qualities that God has given you. We are so very proud of you and how you handle yourself even in the midst of trials. This is a tough road we are traveling that not many kids your age have to deal with - and you are managing it all with such grace. We love you and will continue to pray for God’s leading in your life.

Here are some pictures of Brad and also his band directors, Brad Wadkins and Steve Barber, from Friday night.

Jim continues about the same today. He is able to eat and the mouth sores have become just a minor annoyance. His white blood count went from 400 to 500 today – still very low. Please pray specifically that Jim’s blood counts would come up and that he would be completely healed from this disease. Thanks for your prayers and support. It’s hard to explain how encouraging your prayers and cards and comments are. We are so blessed to be surrounded by such loving support.

We've Got News!

We are thrilled to share that the results of Jim’s bone marrow biopsy show no leukemic cells! We cannot say that he is in remission, however, until his blood counts come up. The doctor expects that by the end of next week, his counts should be better. Jim’s white blood count is very low. A normal white blood count is anywhere between 4.5 and 11 thousand. Jim has a white blood count of only 400. He still needs platelets and blood to boost those counts as well. We’re still unclear if Jim will be able to come home after his counts increase or if they will start Phase II – the Consolidation Phase – at that time. We will hopefully be able to speak with Jim’s doctor this week to clarify this. They did, however, tell us to expect and 3 – 5 week stay and possibly as long as 6 weeks.

Some other good news is that Jim’s mouth sores are healing nicely. He was able to have pot roast for dinner last night and a chicken sandwich tonight! We’re thankful that he is more comfortable and that it is easier for him to eat. Thank you for all your prayers. It is comforting to know that God cares even about the minor side effects Jim has.

Speaking of side effects, Jim’s hair is also getting thinner and thinner. There are no obvious clumps missing but his full thick head of hair is getting pretty T-H-I-N! Other than that, Jim is feeling well. He has a good amount of energy and takes some walks but also likes to nap occasionally too.

Thank you for thinking of us and supporting us and especially for your prayers. We continue to trust God for our strength and peace and are careful to give Him the praise.

Still Waiting

10:15 am: The doctor came in and the first thing out of his mouth was that he still doesn't have the results of the bone marrow biopsy. So we continue to wait. Blood tests, however, continue to show 0 blasts so that's a good sign. Will update when we know more . . .

Learning Patience

We are open to learn whatever we are suppose to learn from this experience of having a diagnosis of leukemia. Apparently, one of those things is patience. This morning, we were eager to hear what the results of the bone marrow biopsy were. The nurse told Jim that the doctor was on the floor and would be in to see him soon. After 1-1/2 hours of Jim waiting first patiently and then impatiently, the doctor came in and told him he didn't have the results of the biopsy yet but that he should have them tomorrow. So we wait another day!

Jim continues about the same. Thank you to those who are able to visit. It helps to fill his day and is an encouragement to him. Thanks also for your continued interest and prayers.

Bone Marrow Biopsy

Jim's doctor decided to do the bone marrow biopsy today. We should find out the results tomorrow. Please pray that the results would show that the Induction Phase was successful. Jim was mildly sedated for the procedure but told me it was painful. He was very tired today and slept. He also complained that the back of his head felt sore. When I tugged on his hair gently, it came out easily. Understanding that this is a minor side effect in the big picture of our battle with leukemia, this side effect is more difficult for me because it is such a visual picture of cancer.

A diagnosis of leukemia in a parent affects the whole family. Please continue to pray for the boys and me. At times I feel overwhelmed with the responsibility of taking care of our family and home as Jim remains in the hospital. We are trying to maintain a routine schedule which includes college visits for Brad, medication regimens for Steven, and speech therapy for Kyle along with all the typical stuff that is required in raising children. This is not a complaint but sometimes the burden seems so heavy. This is the verse I claim as I find myself so tired this evening, "Come unto me, all ye that labour and are heavy laden, and I will give you rest." Matthew 11:28

Thanks for keeping us in mind and praying.

Transfusions

One of the reasons the treatment protocol for AML is done as an inpatient is because the doctors and nurses keep a close eye on the patient. All of Jim’s good and bad cells have been destroyed by the chemo and he has little, if any, immune system right now. Other things they watch closely are his blood counts. He receives both blood transfusions and platelets often if his hemoglobin and platelet counts get too low.

Jim seemed more tired today. Later in the day, he received two units of blood which will help raise his hemoglobin and hopefully give him a little more energy. He said his mouth sores seemed about the same; however, he was able to eat a little solid food. The doctors may perform the bone marrow biopsy tomorrow, however, they are watching his white blood count since it is so low and may need to delay the procedure for a day or so until it is higher. Boredom has definitely set in for Jim. He loves to chat with those who come to visit. His emotions are still very close to the surface, and when we talk about all the people who are praying for him, he gets understandably choked up and his eyes fill with tears. Your prayers mean so much to him. Here are some specific things to pray for:

• Pray that Jim would stay clear of any illness or infection during this time when his immune system is compromised.
• Pray that his mouth sores would continue to heal.
• Pray that there wouldn’t be any or very little leukemic cells found in his bone marrow which would indicate success of the Induction Phase of treatment.

We're trusting God to sustain us. Thank you for interceding on our behalf.

A Beautiful Day in the Fort!

It has been two weeks since Jim was admitted to the hospital. Even though we know we are in for a long journey, it is amazing to see how much he has improved over a two week period of time. The day he was admitted and for a few days after, he was so very sick.

He called today and asked me when I would be coming up because he wanted to go outside again to enjoy the beautiful weather we’ve been having. And he finally uttered the words I’d been suspecting, “I’m getting a little bored.”

Today was a good day. Jim felt well and had some energy. His mouth is still sore – about the same as yesterday – and he has gone entirely to a soft food diet. He did enjoy some soup I took up to him and also enjoyed his visitors. This evening, he kicked back with some friends and watched Monday Night Football. That is something he looks forward to all week.

We know there will be good days and bad days, but we are thankful for these good days when Jim feels well. We are also thankful for those friends who visit. It lifts our spirits as we take this one step at a time. Thank you again for your love and prayers.

Philippians 4:19

"But my God shall supply all your need according to his riches in glory by Christ Jesus."

It has been overwhelming to us to see how many are surrounding us with love and care as Jim remains in the hospital. This picture shows just a sample of the different dishes that were filled with wonderful meals. We have been provided food, child care, house cleaning as well as lawn care and more. I have a friend who calls me daily to see how I am doing and to ask how she can help for each day. We've received wonderful cards, comments and emails. So many have become the hands and feet of Jesus to us. God has always shown Himself faithful in meeting our needs. Thank you doesn't seem adequate to express how grateful we are for all the love and care that has been shown to us.

We've been told that the journey we are taking with battling this leukemia is like a roller coaster ride filled with both good and bad days. Today was a turn around from yesterday for both Jim and me. Jim received platelets and two units of blood which may have helped to give him some energy. He does not have any pain today, and we are counting it as answered prayer that the mouth sores he was experiencing seemed better today compared to yesterday. The doctor added another medication to help with these sores which will hopefully make it easier for Jim to eat.

It was a beautiful day in Fort Wayne today with the leaves just beginning to turn colors. Fall is a favorite time of the year for Jim. We were given permission to take a walk outside the hospital to enjoy the weather and see some of the leaves. We went out the side entrance of the hospital and walked all the way around to the front entrance, sat for a while on a bench, and back to his room. I loved going for a stroll with Jim as he had his sense of humor again and was cracking jokes to make us both smile. Thanks for reading this update. Please continue to pray specifically that Jim would find relief from the mouth sores and for complete healing of this disease. Our God is good and He is the faithful one.

Growing Weary

Today was a rough day for both Jim and me. Our lives have taken on a "new normal" with Jim in the hospital. Our routines have changed, and as we begin this journey we find we are growing tired with it and wish we could go back to the way it was before Jim got sick.

Jim is feeling some of the side effects of the chemotherapy. He complained of a little intestinal pain and has also developed some mouth sores which are very uncomfortable for him. Please pray that the medication will be effective and help the sores to heal. Pray for rest and renewal for us both and complete healing of this disease. This verse was a comfort to us tonight:
"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

Hangin' at the Hospital

So, we’re spending a lot of time here. We’re thankful that this hospital is close to our home and we can easily make multiple trips here in one day if needed - another hidden blessing. I took Kyle up to visit his Dad this evening and it was sweet to see the two of them together. I think Kyle thought it was Halloween with all the masks. He showed us how many different ways there are to wear a mask on your head, hands, and feet! It was great to see Jim laugh. Kyle was a delight to him tonight.

Seems like we’re playing a waiting game now to see how Jim responds to the Induction Phase of chemotherapy. The bone marrow biopsy should be done in about a week. Jim feels good and doesn’t take as many naps during the day. I’m certain he may get a little bored, but he doesn’t complain. Thank you again for all your prayers and support. Please continue to pray that no more leukemia cells are found.

Neutropenia

Today was the last day of chemotherapy for the Induction Phase of treatment. We have been told that Jim is neutropenic which means his immune system is compromised, and it is difficult for him to fight off infection. Visitors must now wash their hands and wear a mask while visiting Jim.

Today was probably the best day Jim has had since he was admitted. He seemed well rested and felt good. He went for a couple walks to get some exercise and has begun both occupational and physical therapy to work his muscles. I spoke with the oncology nurse today, and she told us that the blood tests show 0 leukemic cells in Jim's blood. Yes, that right - zero! We still need the results of a bone marrow biopsy which, will be done in 1 week to confirm that the Induction Phase was successful, but we are certainly on the right track. The nurse said she was "just tickled" about how well Jim is doing. So are we. God is so good to supply all our needs. Please continue to pray for complete healing of this disease.

Day Ten

We're on the last day of chemo in the Induction Phase. Jim had a great day. He slept well and felt good except for being tired. I brought in more cards for him to read. He really loves getting cards and having visitors. Thanks for your prayers and all your support.

The Treatment Protocol

I have been given a large folder full of information about AML and the treatment protocol for it. I am nowhere near understanding it fully, but I thought I’d try to give you a little idea of how the doctors will be treating this disease.

Phase I is called the Induction Phase. Jim undergoes one week of chemotherapy. Three different chemotherapy drugs are used over this one week period. He then has a two week recuperation time. Jim began this phase last Thursday. They will do a blood test to check his levels after the first week of chemo. This is all done as an inpatient. If everything looks good, he will go on to Phase II which is called the Consolidation Phase. That requires three sets of a week of chemo and two weeks off for a total of nine weeks. During the Consolidation Phase after the first week of chemo, Jim will be allowed to come home, I think, to spend the two weeks of recuperation time at home. He will then be admitted to the hospital for each week of chemo. After the Consolidation Phase, a bone marrow biopsy will be done to see if he has gone into remission. This is all the best case scenario. If Jim doesn’t do well after the Induction Phase, he will need to repeat that treatment again which would be called Reinduction. Please pray that the drugs he is receiving would be effective and that Jim would go into remission quickly.

Jim continues to be about the same - tired. He enjoys visiting with those who stop by. He also enjoyed all he cards that had come for him. He gets a little stiff lying in bed all day so we strolled together through the halls of the hospital this evening so he could get a little exercise. Pray for rest for both Jim and for me. I found myself looking for the milk in the cupboard today :) That's never good!

The Everlasting Arms

In 1995, my mom was diagnosed with colon cancer. While waiting to go into surgery, she recalled a verse she learned as a child that was a comfort to her. "The eternal God is thy refuge and underneath are the everlasting arms." Deut. 33:27. I decided to cross stitch a plaque with the words of that verse to give to her as a Christmas present that year. That fall, I was stitching these very words while I sat in the waiting room of my OB-GYN office when I was pregnant with our youngest son, Kyle. Moments later, I was called back to the doctor's office were I was given the news that the baby I was carrying would be born with Down syndrome. This verse has become very special to me. Once again, I claim it for our family as we face our present circumstances. We believe that God is all powerful and is in control of the situation and we look to him for the peace that only He can give and the comfort of his everlasting arms.

Jim continues on chemotherapy today. He had a sleepless night last night and was very tired this morning. He had many visitors and was disappointed to miss a few people because he needed to sleep. I arrived later in the afternoon after he napped and again was able to spend some sweet time with my husband. One of those hidden blessings during this time is being forced to slow our lives and schedules down and spend quality time with those we love. We are so blessed. Jim has been looking forward to tonight all week. He is spending time with some buddies watching Monday night football. He really seems very much himself - just worn out. Please continue to pray that Jim would be completely healed of this disease. We are moved each day by those who have gathered around us with their love and support. Thank you for your emails and comments. I am printing them all out and sharing them with Jim. They are very encouraging to him. We love you all and thank you for your prayers.

The Good News

It seems that when we have experienced difficult times and trials in the past, we are always able to find "the good news." With Kyle, we found out quickly that we experienced many blessings by having a child with Down syndrome. With Steven, the good news is that even though he was diagnosed with cystic fibrosis, he presents mildly and has been able to maintain his health. Each day since Jim has been in the hospital, I have been praying that God would give us that "good news" to hold onto. Here it is: DNA studies are done from the bone marrow biosy. A chromosomal study was done and showed that Jim has an inversion of #16 which indicates that he has a good prognosis given the chemotherapy treatment. Jim asked the doctor to write this information down so I've kept this note in full view in my kitchen where I can look at it often.



Further studies have been done which confirm this finding so the word "possible" can be removed. Today, Jim reported that after 3 days of chemotherapy, the doctor told him the "blasts" in his blood went from 50 to 6. Very good news that the bad cells are being killed off. They have also confirmed that there is no more bacteria in his lungs. His pneumonia is resolving and he is breathing much easier.

We have also been so blessed by the network of people around us that are praying for us and loving and supporting us. From family who have dropped everything to be with us to friends who are providing meals and goodies and child care. We love and appreciate you all but especially appreciate your prayers on our behalf. The diagnosis Jim received has been overwhelming to us but the love and the prayers of so many have been equally overwhelming. God is using so many to supply our needs.

The First Week

On Tuesday morning, Jim underwent a bone marrow biopsy. Even as sick and sedated as he was, the nurses told me later that he gave the doctor doing the procedure a hard time about the type of instrument they used to tap into his bone. He suggested it might work better to use a double helix screw. The doctor guessed, at that point, that Jim was an engineer. It was great to see that Jim still had a sense of humor, but it was also very difficult to see him so sick. Later in the day, he underwent a "bronch" where a tube was put down into his lung to "wash" the lung and gather a sample to determine what type of bacteria he was fighting. That procedure was very successful in terms of helping Jim to breathe easier and easing his cough.

We didn't realize that the results of the biopsy would take a while and even though we didn't have all the results, we felt it was necessary to tell our boys the full story of what was going on with their Dad. I returned home from the hospital to be there when they came home from school. Telling them this news was one of the hardest things I've ever had to do. After lots of tears and working through the initial shock, they boys wanted to go to the hospital to see their Dad. It was a tender sweet family moment full of tears. but we also reassured each other that the Lord has aways been faithful to us, and we will depend on Him again for our strength and peace and for healing of this disease.

Wednesday was a better day for Jim. The medications he had been receiving seemed to be doing their jobs. He looked better and felt better and even walked a lap around the ICU. The procedure for that day was to do an ultrasound to make sure Jim's heart was strong enough to start the chemotherapy treatment and the results showed it was. They scheduled the chemotherapy to begin on Thursday.

Both Thursday and Friday were good days for Jim. The chemo was started but he really didn't feel any effects from it. He was determined to work his lungs and got up two to three times a day to "power walk" laps around the ICU. He did 4 to 5 laps each time. The nursing staff teased him that he should start a walking club so they all could get their exercise. He was reminded that not many patients in ICU do powerwalks and it was fun for them to see him doing so well.

Saturday, he was moved from the ICU to the Oncology Unit. He had a good day but was much more fatigued. Today, I cherished the time I was able to spend with him just hanging out with him in his room watching a little football. He is tired but feels well. We went for a walk together and ate dinner together. Jim's mood is very positive. Though the news has been very difficult and he has been understandably emotional at times, he finds comfort in his faith in Christ which encourages me as well.

The Diagnosis

On Monday, September 29, 2008 my husband, Jim, was diagnosed with Acute Myeloid Leukemia. I’ve decided to create this blog to keep everyone updated on how he is doing.
Here’s the story of how we arrived at this diagnosis . . .

Last July, Jim began having symptoms of swelling in his ankles and discoloration of his shins along with pain the area and a low grade fever. He saw the doctor and was treated for cellulitis, an infection of the deep tissues in the legs. The cellulitis didn’t respond as quickly as the doctor anticipated, and Jim was told to stay on the antibiotic for a longer period of time. To make a long story short, the symptoms improved but the swelling never totally went away.

Over Labor Day weekend, we hosted a family reunion to celebrate my Dad’s 90th birthday. After that big event, a few of us in the family came down with a bit of a sore throat for a couple days. Jim caught a cold but couldn’t shake it. His coughing has continued to persist. A few days later, he began to have symptoms of cellulitis again along with an intermittent fever and returned to the doctor for another round of antibiotics with a diuretic added this time. There was no improvement after a week or so, and Jim returned to the doctor on Thursday, September 25th. His medications were continued and an anti-inflammatory medication was started, and he was asked to return in a week for a blood test. On Saturday, the 27th, Jim coached PAL football in the morning. Not only were his ankles swollen, but his legs were swollen up to his knees. We ran a few errands that afternoon and then Jim decided to take it easy, put his feet up to hopefully relieve the swelling and watch a little football for the rest of the day. Sunday morning, he said he didn’t feel up to going to church. When I returned after dinner, I found him lying on the couch, coughing a lot and so violently he was coughing up blood. He was also running a fever and his legs had developed bruising that wasn’t there the day before. I called his doctor to see if we should take him into the Emergency Room. The doctor suspected a possible phlebitis and changed his medication and asked me to bring him in first thing Monday morning.

When we arrived on Monday, the doctor examined Jim and decided to admit him to the hospital to run some tests, concerned about possible blot clots and pneumonia. As we got settled into his room, Jim was given oxygen to help with his shortness of breath and the technician came up to draw some blood. He was then taken down for a chest x-ray. We were told his x-ray showed that he did indeed have pneumonia. The doctor also ordered a CAT scan of Jim’s legs and chest to check for blood clots.

We called Jim’s mom and told her Jim had been admitted to the hospital for pneumonia. She wondered if she and Dad should come down to help, but we told her we thought we could manage for the short time we thought Jim would be in the hospital. The time came when I needed to leave Jim to be home when Kyle came home from school. On the way to the parking lot, Jim phoned me on my cell and told me he was being moved to the ICU. A bit confused, I asked why and he said he wasn’t able to talk because they were moving him but he would phone me later. I had an uneasy feeling but continued home. I waited a bit, but Jim never called. I was so uneasy at that point that I called him. That’s when he told me that the news wasn’t good. The doctor came in shortly after I left and told him that his blood tests confirmed that he had acute myeloid leukemia. My knees buckled as he told me over the phone and emotionally, I fell apart.

Later, as Jim and I talked, he was very stoic and said that we could get through this. He reminded me that just like when we received the news that Kyle had Down syndrome and Steven had cystic fibrosis, we need to take this one step at a time. That has become my mantra.

He asked me not to share this news with our sons, but to wait instead for the results of the bone marrow biopsy which was scheduled for Tuesday morning. We thought we would know more specifics about this type of leukemia and have a better idea of the prognosis. Steven came home from band, while Brad went to work, and I returned to the hospital to be with Jim. We were emotionally spent and I was functioning in a daze, still not believing this was our reality.