March. What do we say about March. It is a month we would not want to wish on anyone.
At the beginning of the month I went to the local boat dealer and put down a deposit on a Corsair F-28R sailboat. It was what I had decided on at the Miami Boat Show. Production was very backlogged and delivery would not be until late July or early August. I kept telling Adam about all the places we would take the boat. Sailing under the Mackinaw Bridge, sailing to Cedar Point and lots of other places. In a few years I hoped to do the Port Huron to Mackinaw Island race. It is kind of the Holy Grail of racing in this part of the country. My dream was coming true.
Adam had his four-year checkup on Friday the 13th. Lori took him while I was at work. I received a call from her in the late afternoon. She was very anxious and wanted me to come home as soon as possible. Adam needed to go to the St. John Hospital clinic where Lori works for a stat blood test.
The Pediatrician had examined Adam and found nothing wrong. At the end of the exam he said he could do a blood test this time or on his five-year checkup. He decided to do it this time. Lori was on the way out the door when the nurse came running up telling her there was something wrong and they needed to redo the test. She thought the machine had made an error. While they were doing another test the doctor gave Adam another exam, going over him from head to foot very thoroughly. The second blood test came back the same as the first. The readings were way off. The doctor called in a stat order for more complete blood work at the clinic and Lori called me. I got home as fast as I could and we took Adam to the clinic around 5:00.
Needless to say we were very worried all night. The next day (Saturday) the doctor called us with results. There were some serious problems with Adam. His test results were still way off normal ranges in many areas but he could not make a diagnosis from what he was seeing. He had made an appointment with an oncologist for us on the following Monday, March 16, at St. John Hospital.
It was a long weekend. We were in agony not knowing what was wrong. On the one hand it seemed like things were not really serious or they would have admitted Adam right away. But on the other hand his blood tests were very abnormal and it was scaring the daylights out of us. To top it all off Lori was throwing a baby shower at our house on Sunday, March 15, for my sister-in-law Kathy. It was quite a feat for her to handle all the pressure of the party with the worry of Adam constantly on her mind.
We met with the oncologist on Monday. He talked with us but did not offer any diagnosis. He wanted to do a spinal tap on Adam and get a bone marrow sample. We asked when. He said right now. So he did it right in the office with just a local anesthetic. It was a very painful experience for Adam. I stayed with him holding his hand and talking with him during the procedure. It was very difficult to see him go through this. Lori had to leave the room because it was too hard on her. After the spinal the oncologist told us to come back on Wednesday, March 18. He would have the results and was sure he could give us the diagnosis. Two more agonizing nights to endure. Neither of us were eating or sleeping well.
Finally we went back to the oncologist on Wednesday.
Right away he told us it was leukemia.
My heart was pounding and I felt like I had been hit with a sledgehammer.
He then quickly explained to us that there were three major types of leukemia and Adam had the most curable type. We needed to keep a positive attitude and be hopeful he would get through this. The cure rate for children with standard Acute Lymphoblastic Leukemia (abbreviated ALL) is up to 75%. Of the roughly 2500 cases in the US of pediatric leukemia each year, 85% have ALL. We were lucky Adam had fallen into this group. The two other types have far lower cure rates and require bone marrow transplants as soon as possible.
It is amazing how quickly your values change. A week ago we would have never believed that being told your son has a 1 in 4 chance of not living the next year was a good thing. Kids with one of the other types of leukemia get quoted odds of only 1 in 5, or less, of making it through another year. We found out that one of the major signs of leukemia is joint pain. Adam's leg pains in Florida had been the leukemia making its presence known.
After much research and reading of other people's stories with leukemia I found that it is misdiagnosed many, many times; for weeks or months. Doctors will pass it off as a virus or growing pains, or some other thing that the child will outgrow. In some cases parents with a feeling that something more serious was occurring have had to demand that the doctor do a blood test. Only then finding out their intuition was right, and leukemia or some other cancer was really the source. Adam's pediatrician later told us Adam had looked a little pale to him and that was why he wanted to do the blood test. We were lucky he did.
Normal bone marrow produces, among other things, lymphoblasts (or blasts for short). These blasts normally grow into mature white blood cells. When someone has leukemia the bone marrow starts producing blasts that never grow up. They remain blasts and continuously multiply. Eventually the blasts pack the bone marrow and blood completely, choking out the normal red cells, white cells, and platelets. A variety of symptoms can appear. In Adam's case it was joint pain from the blasts packing the joints in his legs. In other cases it can be loss of energy, bruises that don't go away, fevers, and more.
Thus began a roller coaster ride that has continued every day since.
The oncologist said Adam would begin a standard, well defined chemotherapy regimen. We said when. He said tomorrow morning! They had already scheduled him for admittance and surgery early the next morning. He told us to watch out for fevers that reached 101 degrees or higher. This would require immediate admittance. Adam had been running a mild temperature for several days. We would have to keep a close eye on him that night.
The last several days had been filled with many tears, but nothing was ever worse in my life than this one night before admittance. Adam's temperature kept going up and down all night, I couldn't sleep and kept getting up to check it. A couple of times it briefly went over 101 and I felt we would be leaving for the hospital in just a few minutes. Each time it was high I said let's give it 20 minutes. If it remains over 101 we will go to the hospital. It came back down each time. I had horrible thoughts all night, thinking we were going to lose Adam, that things were going to go terribly wrong.
In the morning Lori and I could not eat breakfast. Adam was under orders not to eat or drink after midnight because of the upcoming surgery. My mom arrived to go with us. So we just got in the car and left for the hospital.
An admitting nurse who was wonderful met us. Nurse Jan greeted us all warmly and then marched into the admitting room blowing a kazoo! I don't know how much it helped Adam but it sure helped Lori and I. She was there to give us support and encouragement all morning. Adam was in surgery for a little over an hour so they could implant a medi-port in his chest. This device will remain in his chest for at least a year. It is a chamber with tubes that attach to major vessels in the neck and near the heart. There is a membrane over the chamber and it is visible under the skin as a quarter size protrusion that rises out of the chest about half an inch. It allows the nurses to give shots and start IV's with much less effort and side effects. They just poke the needle through the skin, through the membrane, and into the chamber. Blood flows into the chamber through one tube and out the other, carrying medicine into the body. It is also much easier for Adam. When the IV is done the needle is removed and there is nothing left but skin.
It was very hard to watch Adam be wheeled into surgery. He was pretty frightened by now. Nurse Jan had started an IV in his hand earlier and he did not like that at all. The surgeon who would do the procedure met with us briefly about an hour earlier. We did not like him at all. He was one of those doctors who has a know it all attitude and talks down to everyone, us and the nurses. We found out months later he had put a medi-port in another child upside down! They kept having problems with the port and finally had to do surgery to find out what was wrong.
Lori, my mom, and I were all in tears as Adam went through the operating room doors. I felt like I would never see him again.
The surgery went OK and Adam was soon taken upstairs to the pediatric floor for what we thought would be at least two weeks of intensive chemotherapy. He ended up only needing five days in the hospital, but it felt like two weeks. There were lots of oral medications to take. Adam fought them with all his strength. We were extremely frustrated. Everything we tried to get him to take the medicine did not work. The nurses asked Lori and I to leave the room many times so they could use their techniques on him without us nearby. That way he would not be expecting us to "rescue" him. They would hold him down and pinch his nose to force him to swallow. It was still very difficult and would remain so for several months. He would get so worked up that he would throw up many times within a minute or two of the medicine going down. Then we would have to do it all over.
Sometime during the week I went to the boat dealer and asked if they could refund my "non-refundable" deposit. After I explained why they said it would not be a problem. I hope that someday we get to the point where we can try it again. For a long time after, Adam kept talking about going sailing when our boat came. I never told him it would not be coming this year.
The first 28 days of leukemia chemotherapy are called the Induction Phase. It is where the oncologists attempt to induce remission of the leukemia. We found out this is one of the easiest things to accomplish with leukemia. 97% of pediatric leukemia patients achieve remission in this phase. Unfortunately many of them do not remain in remission, which is why the overall survival rate is only 75%. Adam achieved remission in less that two weeks, which was a positive sign. He was responding very well to the chemotherapy. The hard part was getting it into him.
The nurses were wonderful on the floor. I'll never forget one of them helping me try to get the medication into Adam one evening. We were having another very hard time. She was trying to talk with Adam about her dog while giving the medicine. Adam had told her about his dog (actually his grandma's dog, Rosie). She tried everything. It did not work very well. We finally got it into him. She left and came back with pictures of her dog. She was showing them to Adam while she was in tears. I was crying too.
After we got home we had to continue with the induction phase. This meant giving several types of oral medication from one to three times a day. Prednisone was the worst of the lot. It has the most horrible taste you could imagine, and there is nothing they can do tsk the taste. We tried everything to get it down Adam. We would many times end up using two or three doses just to get one dose into Adam.