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March
Adam's oncologist was proposing to get more aggressive with chemotherapy. The protocol Adam had been on was no longer valid. Much chemotherapy had been missed. Since early July there had only been a minimal amount of chemotherapy. This was very scary to us. A relapse of leukemia would be extremely serious.

Every day I wake up with the fear in my heart that yesterday was the last good day for Adam. That today would bring bad news and the start of a terrible ordeal. We were eager to do what we could to get more aggressive with chemotherapy and increase Adam's odds of staying in remission. At the same time we had to be careful not to do something that carried an undue risk of further damage to the central nervous system. The oncologist came up with a proposal. We felt it was time for a second opinion. How to proceed with chemotherapy would be the most important decision of Adam's life so far.

Lori and I took Adam to the University of Michigan to meet with Dr. Valerie Castle for a second opinion. She was wonderful with Adam. I had lots of questions for her. Dr. Castle answered everything with a great display of intelligence and knowledge. She also had a special combination of warmth, kindness, and compassion that makes her a truly great doctor and human being.

She offered to work up an alternative chemotherapy protocol for Adam after consulting some other leading oncologists. We left very impressed with Dr. Castle and also the facilities at U of M.

Less than a week later we had Dr. Castle's detailed recommendations for Adam. She explained what she wanted to do and why she wanted to do it. A lot of factors were involved, but in the end we made a decision to transfer Adam's care to Dr. Castle at the University of Michigan. They have a combination of expertise, facilities, and personnel that is hard to beat. We wanted Adam to get the best care possible and felt it was at U of M. Our one way travel distance would go from 25 miles to 75 miles, but I would never let that stop me from getting better care for Adam.

During this time, when we were weighing the pros and cons of the proposals for Adam, I was having a hard time with the long-term outlook. Talking about what we could and could not do for a new chemotherapy protocol was reinforcing how serious this was. We were being told some things just could not be made up or replaced in a new protocol. I felt like the odds against Adam were greater than ever. If he is still with us a year from now we will be very lucky. He is so healthy and happy right now it is hard to believe the leukemia could return. The emotional side of me does not accept the possibility of death. If it did I do not think I could function every day. But, the analytical side, which I can never seem to turn off, keeps telling me the odds are not very good. I realize that, and it slowly eats away at me. It is on my mind a lot.

No matter what happens I will never give up on Adam. He will get the best from me.

Every time I am home to get Adam on the school bus I go to the corner to wave and blow him a kiss when the bus comes back around the block. One day, when he got home, he told me he had kept the kiss I blew him as he went by. He put it in his pocket at school. He got the kiss out of his pocket while we were getting off the bus.

I sure do love him.

Adam's new oncologist, Dr. Castle, wanted to start a modified "intensification" chemotherapy right away. This would last 28 days. Then there would be 28 days off followed by a repeat 28 days of intensification if the first 28 days were tolerated well enough. We would have to visit U of M up to three times a week while Adam was undergoing intensification.
Adam with Dr. Castle

I knew right away it was finally time to stop working. We were under Lori's insurance so that was a factor in deciding that I should be the one to go on the Family Leave. I had the thought in the back of my mind that, once the 12 week Family Leave was up, I would not be able to go back to work. It is hard to have the family income cut in half. Our expenses are higher than they have ever been. In travel alone we are averaging over 10,000 miles a year just for medical appointments. But, more than anything, I want to do whatever I can to give Adam the best possible care.

Our first day of intensification chemotherapy at U of M went like this:

Up at 6am for our first day of chemo at U of M. Adam's visit today included a spinal tap. As a result he was under orders not to eat or drink after midnight. When we checked in they sent us to the blood station. The blood station thought his port had already been accessed. When they found out it had not they sent us back to the clinic and said it would be done there. One of the nurses accessed the port. Dr. Castle examined Adam and went over what would happen today. Then we were sent to pediatric cardiology for a heart ultrasound. Adam was afraid and would not hold still. Tammy, the ultrasound operator, told me she would come to the clinic after he was given the sedative for the spinal tap. She could do it there while he was relaxed. Back at the clinic we went into a room and the Nurse Practitioner, Marcia, did the spinal tap. The fluid was clear. She said she would take enough fluid so they could do a myelin basic protein test. Adam received demerol to make him drowsy and help with the pain. He did very well for the tap.

After the tap we went back to the clinic and a doxorubicin drip was started. Adam played Super Mario on the Nintendo 64 the whole time. When it was done we left for home. Before we left the nurse gave me the blood counts. WBC=4.2 Hemoglobin=12.7 Platelets=313000 ANC=1100.

Adam said he was hungry and wanted to stop and eat. He had been under orders not to eat or drink since midnight because of the spinal tap, so he was pretty hungry. I got off on Washtenaw road and we went to a Big Boy. He wanted a waffle. I ordered that and a burger for me. Adam drank a little milk and then I could see he was getting an upset stomach. I asked him if he wanted to get up and leave. He said he was OK but I was really tempted to go anyway. I was pretty sure he was going to be sick in a short while. I asked the waiter for a large cup to take with me. He took one bite of the waffle and then spit it out. I ate half the burger and then we left as fast as we could.

A few miles later on I-94 he threw up. Adam got the cup to his mouth in time and most of it went in. He tried so hard to get it all in the cup and not spill any. I was very proud of his efforts. We pulled over and got cleaned up. He almost threw up a couple more times but held it down. Then he fell asleep for about an hour. We got to Gratiot and 13 Mile before he threw up again. Then we made it the rest of the way home. I could kick myself for not thinking to bring lots of towels, a bowl, and change of clothes in case this happened.

He was very hungry and wanted something to eat. We gave him a little yogurt and water. He threw up several more times. Then we tried Pepsi and he threw that up. Lori called the on-call oncologist. She said she would call in a prescription if the nausea continued. Adam drank water and kept throwing up so we called back and got a prescription called in. By the time I got back with it he had fallen asleep.

Adam woke up at 6:30 the next day saying he was hungry. He hadn't eaten in over 34 hours. We got up and he ate a bowl of Corn Chex. Then he had a bowl of Cheerios. He said his stomach hurt a little. Other than that everything was fine today. What a relief that he feels better.

On our third trip to U of M for chemo things got interesting again. This is what happened:

Adam received an injection of a drug called L-asparaginase today. Normally he would get the shot, be monitored for an hour, then be sent home. After the hour was up (around noon) we went upstairs in the hospital to get some lunch before starting for home. As we were getting ready to leave I noticed Adam's forehead was getting a rash and he was scratching it.

This was one of the side effects of L-asparaginase we were supposed to watch for. So I took him back into the clinic room. The nurse said it was an allergic reaction to the drug. A severe reaction can cause a person to stop breathing. She gave him a teaspoon of benadryl, which is supposed to counteract the rash and itching. We started out for home again.

When I got to the parking deck I noticed Adam's ears were turning red. The nurse had told me it may take a little while for the benadryl to kick in. I decided to keep going and head for home. We got a few miles down the road and Adam suddenly started to complain of itching in his eyes and ears. I looked and the rash was getting worse. In a matter of just a minute or two it got much worse. So I turned around and went back to the hospital. Adam was almost in a panic. He wanted me to get him back to the hospital so they could do something. I could not be33CCe how quickly the rash and itching were advancing.

The nurse took one look and paged Adam's doctor. I knew she was concerned because she started getting an IV ready right away, even before the doctor called back. The doctor called back and said to start an IV with benadryl. They checked Adam's blood pressure and it was very high.

Dr. Castle came in after a while. She said we were going to have to take L-asparaginase out of the treatment protocol. Another strike against Adam, I thought.

Around 2:30 Adam was stable. The rash was gone. Once again we started out for home.

We got home a little after 4:00. By 5:00 the rash and itching were coming back. The doctor had said this might happen and to keep giving benadryl every 4-6 hours all night. The rash kept getting worse so I called the after hours on-call number. The doctor there said to increase the benadryl to 2 teaspoons and bring Adam to the emergency room if he develops trouble breathing. He finally got to sleep. The rash covered almost his whole body. It was pretty scary. All we could do was hope it got better by morning. We kept checking him all night long.

It took several days, but finally the rash went away.

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