I'll Praise You In This Storm

Today was the scariest most difficult day we have had since Jim was diagnosed with leukemia one year ago.

Jim has been doing well over the last few days and we have been waiting for his counts to rise so he can come home. Today, however, he experienced a new symptom - a tremor in his right arm. Jim called me to let me know that the doctor examined him and ordered a CT of his head to rule out any bleeding in his brain and a neurology consult. I received another call less than an hour later from a nurse telling me that Jim had experienced a seizure and was not doing well. She asked me to come to the hospital right away.

As I drove to the hospital, a million things went through my mind, not knowing what to expect when I got there. It was very scary. When I arrived, I was met by another nurse who gently took my hand and told me first that Jim was stable and awake and talking. Then she told me the entire story. Jim decided to take a shower. As he was drying off, he experienced some cramping of his right hand and his fingers curled inward. He was not feeling well at this point and pulled the cord to call the nurse. He doesn't remember anything after that. His nurse came right away and found him face down on the bathroom floor. She called a code and the nurses and doctors came in to get him back in bed and assess him. They believe he experienced a seizure and was out for about 15 minutes. Within 30 minutes, they had him in the ICU. He has some bumps and bruises from his fall, and since Jim's platelet count is so low, the plan was to have another CT scan done of his head to see if he experienced any bleeding. Both the first and the second CT scans were negative for any bleeding - a big sigh of relief. Then a neurologist reviewed his records and examined Jim. The neurologist believes the seizure was a side effect from an antibiotic he received. More tests were ordered to rule out any other causes, but the doctor seemed convinced that this antibiotic was the cause. It has been discontinued.

Jim is a little sore and bruised, but is resting comfortably this evening and receiving the best of care in the ICU. Once all the test results are back and he gets the okay from the doctor, he will be moved back to the Oncology Unit, probably in a day or so.

On another note, Steven, our middle son who has cystic fibrosis, has not been feeling well over the last few days. He has developed a cough and a stuffy nose. I called the doctor this morning and they have asked to see Steven in the office tomorrow morning. The nurse cautioned me that the pulmonologist may want to admit Steven for IV antibiotics which is sometimes done for patients with cystic fibrosis to treat lung infections. Thankfully, Steven presents mildly with cystic fibrosis. He was not diagnosed until he was 10 years old, and outside of his diagnosis, he has not had any hospital admissions. At least not until now, possibly.

As I reflect on this day, I am struck by how difficult this journey is. This is hard. I am so weary in the evenings and sometimes so overwhelmed by it all. At the same time, I see how the Lord continues to watch over and provide for us. I am so thankful that Jim was able to pull that cord so that help came right away. I am so thankful that the CT scans were negative. I am thankful that the seizure appears to have been caused by an antibiotic that can be discontinued. I am so thankful for the best nursing staff we could ever imagine. Not only did they do their very best for Jim, but they were gentle with me and gave me the time I needed to cry and absorb it all and answered all of my questions. We saw the look of concern on their faces. Many came up to see Jim and make sure he was okay before leaving when their shift ended. I know they read this blog and so I want to take a moment to give a shout out to them. They have become like part of our family, or maybe it's that we have become a part of theirs. They are wonderful caregivers that truely want the best for Jim. Thank you, thank you, thank you for taking such good care of Jim. Thank you for your kindness and concern for both of us. We count you all as a blessing from God. You all make this difficult journey a little more bearable.

We will continue to trust God as we find ourselves in the middle of this storm. We know He is all powerful and is able to do immeasurably more than we can ask or imagine.

Oh, I forgot to tell you - Jim began losing his hair a few days ago. He shaved his head this morning so he wouldn't have to deal with it anymore. This was such a difficult thing for me to see last year. Today it seemed pretty minor.

Thank You For Your Prayers

By Saturday, Jim’s temperature had returned to normal, although he was a little wiped out from the fever and was not at full strength yet. His chest x-ray came back clear and blood cultures that were done were also clear. A different antibiotic was given and Jim was feeling much better by Saturday evening. We breathed a sigh of relief that things resolved so quickly. Thank you for your prayers.

Jim’s brother, John, flew in from Virginia to see his brother. They spent Saturday together watching the football game. Later on Saturday, John went with me to Mishawaka to meet up with Brad and some of his friends, and we all went to the band contest where Steven was participating. We’re proud to say Homestead took first place with an awesome performance. It was so nice for me to spend time with both Brad and Steven. And, what a blessing to be able to spend some one-on-one time with my brother-in-law as we traveled to Mishawaka and back. I am blessed to have married into such a wonderful family. We all enjoyed our time with John and wish he could have stayed longer. Another blessing to count - and wonderful and supportive family.

Fever

Jim has been running a low grade fever on and off over the last few days - something that could be related to the blood products he is receiving. Today, his temperature spiked to 101 degrees, and he is a little more uncomfortable. The doctor ordered a chest x-ray and began antibiotics and has given Tylenol for the fever. With Jim's white blood count being so low, it is not unusual that antibiotics might be needed. Even so, please pray that the medications Jim is receiving would be effective and his temperature would return to normal, and that Jim would be back to feeling better. Jim's brother, John, is coming into town tonight and will be able to spend some time with Jim tomorrow. Hopefully, that will be some more good medicine for Jim - watching football with his brother!

An Optimistic Doctor

Jim is seen daily by the doctor in the oncology practice that does rounds at the hospital for that week. Yesterday, his own doctor also visited him to have a chat and give him some encouragement. Jim’s doctor is certain that the problem he had with cellulitis was caused by the leukemia and not necessarily caused by a bacterial infection. He went on to explain that leukemia can attack the soft tissues. This would explain the swelling in Jim’s legs as well as the swelling that occurred in his right arm when he was admitted both last year and currently. What that means is that there is only one illness to treat and not other complicating problems as well, which is very good news.

He also talked to Jim about the bone marrow transplant. Very interestingly, once a donor is identified, one of the ways the donation is done is through a series of blood draws. The donor is given a shot that increases their white blood count and produces stem cells. Over a period of days, blood is given and the stem cells are then separated from the rest of the blood. Those stem cells are what Jim will receive, much like a transfusion of platelets or hemoglobin that he currently receives. If this is indeed the way that Jim’s transplant will occur, it is obviously much easier for the donor to tolerate. The doctor was also very encouraging to tell Jim that a large percentage of patients who have bone marrow transplants are long term survivors.

Jim is doing great. Other than feeling a little worn out, he is feeling well. He is beginning to have some mild mouth sores but has been taking medicine to help with that. He remains optimistic and pleasant to be around. The doctor predicted possibly another 10 days or so in the hospital. By that time, his counts should begin to rise. Once it is determined that he is in remission, he will be referred to IU Med Center to begin the process for the bone marrow transplant.

It was a good day. We are once again encouraged and thankful that Jim is receiving such wonderful care by both the doctors and nurses.

The Last Day of Chemo

After five days of three different kinds of chemotherapy drugs, the last bag of the last drug was hung tonight. Jim has been feeling remarkable well. It seems he has reaped the benefits of the drugs but not the side effects . . . yet. His blood counts are all low, and he is watched closely for when transfusions are necessary. Now it’s a waiting game – waiting for Jim to generate bone marrow again that hopefully will not contain leukemia cells. This could take 2 to 3 weeks. So for now he waits as an inpatient in the hospital. He sometimes gets a little bored and loves the visitors he has. We count it as a special gift that since he has to spend this time in the hospital, he can do it during football season. Close friends, who are almost like family, picked up our son, Steven, last night, and they all surprised Jim by coming up to watch Monday Night Football with him. I was on the phone with Jim when they arrived, and it was sweet to hear the surprise and happiness in his voice to have friends join him for the football game.

Since his counts are so low, visitors are asked to wear a mask while visiting and to visit by phone if they have a cold or other respiratory illness. Jim’s diet is now restricted to cooked foods – no fresh fruits or vegetables since they might carry bacteria. He is also not allowed any fresh flowers or plants for the same reason.

Jim has a remarkable optimism and peace about the circumstance we find ourselves in. He continues to uplift and encourage me and those who visit him. We recognize this as answered prayer and thank God for the peace, comfort and mercy He gives us. And, we are trusting Him for the outcome.

As before, we find ourselves surrounded by people who are reaching out to bless us. So many are helping us with practical things – food, lawn care, housekeeping, and childcare. We continue to be amazed at the selflessness of those around us. Thank you for your love and care for us.

Please continue to pray that Jim would go into remission quickly and be completely healed of this disease.

Prayers Are Already Being Answered

Chemotherapy began yesterday with three different drugs being administered. We are reminded again how powerful these drugs are as we were given an explanation of each one with the side effects that may accompany them. Believe it or not, one drug may temporarily turn the whites of Jim’s eyes blue! These three drugs will be given every day for 5 days. The doctor seemed confident that he would be able to get Jim in remission quickly. If Jim achieves remission, he will then be referred to IU Med Center for a bone marrow transplant.

A few people have asked if they could be tested to see if they are a match to donate bone marrow. We were told that the best chance for a match would be with Jim’s siblings and then possibly other family members. Jim has two brothers who have both agreed to be tested to determine if they would be a match for Jim. If they are not a match, we will then be given the criteria to see who would qualify to be tested as a bone marrow donor. Please pray that Jim would go into remission quickly.

The news of Jim’s relapse has hit us hard. The last few days have been difficult for us. However, already I can see prayers are being answered. Jim was feeling better today and sat in a chair most of the day instead of being in bed. His attitude is positive and he is good-natured. His peace about this situation helps to calm me as well. I also realize again what a man of faith he is and that encourages me look toward his source of strength as well. We were given a devotional book and together we read the entry for September 10, the day we were given this horrible news. It refers to Paul who in 2 Cor. 4:8-9 says, “’We are afflicted in every way, but not crushed; perplexed, but not despairing; persecuted, but not forsaken; struck down, but not destroyed.’ We can’t attribute Paul’s inner perseverance to any other source than the Holy Spirit.” The devotional goes on to say, “No matter how difficult or discouraging our own circumstances become, we have the very same Spirit. If we’re hindered, we don’t have to be frustrated. If we’re puzzled, we don’t have to be in despair. If we’re persecuted, we don’t have to face it alone. If we’re dying from a physical disease, we can be alive in heart and spirit. Our outer person might be exhausted and hard-pressed, but we have the assurance that our inner self is being renewed with fresh strength daily from the Holy Spirit. (2 Cor. 4:16) Please pray that we will continually seek God's strength and peace in this situation.

Brad came home from college to see his dad this weekend. Here is a picture from that visit.

Difficult News

September 29, 2009 is the one year anniversary of, my husband, Jim’s diagnosis of Acute Myeloid Leukemia. As that date drew closer, I was afraid it would bring back bad memories of a difficult time in our lives. Instead of recalling that date with dread, I was planning to have a big party and invite all our family and friends to celebrate Jim’s life and what he means to us to mark that date with celebration.

It is with a heavy heart and much disappointment that I need to tell you that this celebration will not be occurring this year. We recently found out that Jim has relapsed and his leukemia is back. We have cried all the tears we can cry and have just been so very sad at this news, wondering if and how we would be able to fight this battle yet again.

Here’s the background: On August 20, the day before we left to take Brad to college, Jim showed me a discolored swollen area of his leg which looked like the cellulitis (an infection of the deep tissues of the leg) that he had prior to his diagnosis a year ago. He saw his doctor the following morning, was given an antibiotic and met up with us at Bethel College to help get Brad settled. He seemed to be doing fine for the next week until August 27 when he came home from work with a fever and the same symptoms in the other leg. We made a trip to the Emergency Room that evening, and Jim’s doctor decided to admit him for IV antibiotics. The cellulitis resolved quickly but the hospital stay was complicated by a pneumonia shot that was given to Jim. His arm, around the site of the shot, became red and swollen and he continued to run a fever which was attributed to a bad reaction to this shot. We were told at that time that this did not indicate that the leukemia had returned. Rather, since Jim’s blood counts were lower due to the chemotherapy he had received a few weeks earlier as part of the clinical trial he is participating in, it was more likely that he picked up this infection and was not able to fight it off as easily. On September 8, Jim was scheduled to have chemotherapy again for the week. It is routine to do a blood draw before giving chemotherapy. This time, the blood draw showed some abnormalities in his counts. The doctor suspected then that Jim had relapsed and cancelled the chemotherapy and scheduled Jim for a bone marrow biopsy which would confirm if the leukemia had returned. We met with the doctor today and received the bad news that Jim had indeed relapsed. The doctor gave us a new plan of action and admitted Jim this evening to prepare for the chemotherapy that will be administered tomorrow.

This has understandably been a difficult week for us. We began our prayers on our knees with the only word we could utter before God and that was, “Help!” Through our tears we asked again for those things that our Lord has provided for us before - comfort, strength, mercy, and His peace that passes all understanding, and God’s healing touch. And now we ask again for your prayers for Jim as well. The recommendation this time is for a bone marrow transplant which requires that the cancer be in remission. Please pray that Jim’s cancer would go into remission quickly so we can move forward to the next step in the process. Pray also that Jim would maintain a positive attitude and not struggle with depression. Please pray for our family as we face this battle again one year later.