We finished the induction phase in the middle of April. It had been a very stressful time for all of us. Getting the medicine down three times a day was pretty much a major disaster each time. It seemed like a nightmare that was never going to end. We went through several weeks of Adam vomiting nearly every day. We thought this was normal. After all, it seemed like common knowledge that chemotherapy drugs make anyone nauseous. One day while talking with the oncologist we explained how frequently Adam would vomit. He said this was not normal. Furthermore he would prescribe something that would bring relief. We were sure surprised. The medication worked right away and we had no problems after that. Never assume anything!
At least with the end of induction the daily medicine doses went down. The next phase was called consolidation and would last for 144 days. We soon found out that this would be the hardest phase for Adam. Every three weeks Adam would be admitted to the hospital for three days. During this time he would receive a large dose of methotrexate (1.6 liters) intravenously over the first 24 hours. Events like this were where we came to really appreciate the value of the medi-port in Adam's chest. The medi-port made it very easy to start and stop IV's.
Adam would typically be admitted on a Thursday morning. The methotrexate would start around lunchtime. 24 hours later the bag would be empty. Friday night the first leucovorin dose would be given. Usually by Saturday afternoon Adam would be discharged.
Methotrexate is pretty horrible stuff. It kills cancer cells but also kills normal cells. The trick is to give enough of it to fight the cancer but not enough to kill the patient. The dose Adam would receive would be enough to kill him. To prevent that he would receive Leucovorin during the second 24 hours. This was called Leucovorin rescue. The Leucovorin neutralizes the methotrexate.
Cancer cells are destroyed more quickly than normal cells by the methotrexate. So the Leucovorin is introduced after the high dose of methotrexate has had enough time to destroy a large number of cancer cells but has not had enough time to destroy enough normal cells to adversely impact the patient. Pretty scary stuff. A 1-1/2 teaspoon dose of Leucovorin would be given orally every eight hours for a total of five doses. I was very surprised to find out only the first two doses would be given in the hospital. After that we would be sent home and give the last three doses ourselves.
Once again we had to fight with Adam to take the medicine. Only this time it was critical that he take it. He was getting very good at spitting out the medicine no matter how we held his nose and pinched his cheeks. I was not sure how much he was actually swallowing. We were getting panicky. Was he getting enough Leucovorin, or not? What if he got too much? We called the oncologist emergency number to find out what to do. I was worried about giving an overdose of Leucovorin. Fortunately, he told us more than the specified dose would cause no harm. Unfortunately we only had a bottle with exactly five doses in it, so we could not afford to waste much. Our five-dose bottle (7-1/2 teaspoons) cost $60, so the pharmacy is very precise about putting in only the amount needed. We got through the last three doses but it was quite a struggle.
Adam had made friends with another four-year-old boy while in the hospital. Trevor had been diagnosed with leukemia one day before Adam. Each leukemia patient has a roadmap that they follow. It specifies the entire course of treatment. Things like hospital stays, treatments, procedures, drugs, etc. and when everything takes place. Adam and Trevor had the same roadmap and schedule. So they always were together in the hospital. Adam and Trevor were quite a pair. One time they had squirt guns and both ran through the halls squirting all the nurses. It was really a sight seeing Trevor's dad and me try to keep up with the IV poles, since they both had IV's running anytime they were in the hospital. Another time Adam had a pad of paper with him. He patrolled the halls giving out tickets to any nurse that did not smile. We always had great nurses and they all got along wonderfully with Trevor and Adam.
Adam and Trevor in the hospital.
Lori and I would alternate sleeping with Adam in his room during any overnight stay. These were about the worst nights you could imagine. The rooms were small and usually had two patients. It was never quiet at night. A nurse or intern would come in every four hours to check Adam. The parents were expected to sleep on fold up beds or these ugly, antique, uncomfortable reclining chairs. Neither one was much of a choice and with both parent "beds" opened up it was nearly impossible to move around in the small room. Every time Adam had to go to the bathroom you had to maneuver the IV pole around everything.
Another requirement of the consolidation phase was an outpatient procedure to inject three drugs into Adam's central nervous system. It is called a triple-intrathecal, abbreviated TIT. This was also done every three weeks, but on alternate weeks from the methotrexate/leucovorin treatment. For this Adam would go to Pediatric Intensive Care early on a Thursday morning.
After he was all checked in, vitals taken, IV's started, and consent forms signed a team of doctors and nurses would get started. They would introduce the drug versed into the IV fluid. This would make Adam very drowsy. When he was nearly asleep they would do the spinal tap. This is a new technique called conscious sedation. It is much easier on the patient than the way this procedure was done just a few years ago.
A LONGGGG needle would be inserted into the spine. When the needle was in the end was removed so a few drops of spinal fluid could be collected. This would be examined for leukemia cells. If the fluid came out crystal clear, like water, it was a good sign. Cloudy fluid could be one of the first signs of a leukemia relapse. I always felt like my heart would stop if the fluid came out cloudy. After the fluid collection the three chemotherapy drugs would be injected. One of the drugs was methotrexate. Adam would soon wake up once the versed was turned off. He would be monitored for another hour. Then we could go home. We were usually in and out in six hours or less.
This picture always tugs at my heart.
It was taken in the hospital. I see a sad, resigned
look in Adam. But I can also see some bravery, and determination.