Before the Hospice Decision

July 3, 2001
This is the day our journey to hospice began. This was the day we had the MRI done that confirmed my suspicions that the tumor was indeed on the move. I really did not think it was as bad as it turned out to be, though. I never really thought we would be calling in hospice that soon. Anyway, we had the MRI done as an inpatient because the hospital would not schedule both a spine and brain MRI as an outpatient on the same day, because of time. Our oncologist then said he would just admit Kevin to get it done right away. Kevin was having many neurologic problems that were rapidly occurring in the two weeks after he had a second surgery to drain a cyst. The scariest thing for me was the fact that, the day before, Kevin did not know who I was. He would not believe I was his mother. I will never forget the day that our oncologist and Kevin's psychologist came up to the room at Children's Hospital and said that the MRI showed the tumor to be invading Kevin's entire brain. The suggestion was that we stop treatment, call in hospice, and let nature take its course. What I felt that day is still very hard to describe. My world was falling apart; my youngest son was going to die. This could not be true. I told my oncologist that I had to talk to Henry Friedman first before we made any decisions. He graciously called Henry and told him what was going on. Henry offered some chemo that might slow down the growth. Henry wanted to see the films first, though, before he would give a definite answer. We left the hospital that day and returned home trying to decide what to do. Our inclination was to indeed call hospice and let nature take its course, but we did want to see what Henry had to say after he saw the films. At this point, Kevin did not seem to understand what was going on. He was totally blind, he had no short-term memory, and he was so very confused. He was present when the oncologist gave us the news but did not seem to understand (I think that was a blessing).

July 6, 2001
Over these few days, Kevin was still walking, talking, and acting like his silly self, but his personality was changing. He was not the same child. We did hear from Henry on this date, and he too thought things were out of control. He did say he could offer more chemo, but realistically it would not stop anything---only slow things down---and Kevin would regain nothing. We decided that Kevin would not want to live this way. He hated all the help we had to give him up to this point; he was very independent before he got sick. At this time, we told Henry and our oncologist that we would let nature take its course. Both doctors thought we made the right decision. We still had not contacted hospice, though, because I felt that was such a final step and I just could not do it.

July 8, 2001
Kevin awoke with a terrible headache (he had been fine the day before). I called the psychologist, who got us in contact with the doctor on call, and oral morphine was called in. Kevin seemed to be in less pain after the morphine, and he had a somewhat normal day (his last normal day). I did contact hospice this afternoon, and they said they would come out the next day. Kevin talked on the phone to my oldest son that evening. Some of the conversation did not make sense, but then lately, a lot did not make sense.

Under Hospice Care

July 9, 2001
Kevin awoke with another very bad headache. I tried the oral morphine but it did nothing. Tried again an hour or so later, and Kevin became very sick and began to have small seizures. I was very scared, so I called hospice and talked with the nurse, trying to decide if we should go to the hospital or stay at home. After talking to the nurse, I decided that Kevin would not want to be in the hospital. He hated the hospital. So we decided to just remain at home and try to maintain the best quality of life possible. I was able to get him calm after a few hours. The hospice team came out that afternoon, and they were able to get his pain under control and they were able to get me calmed down. The team was wonderful. They were so caring and concerned about Kevin, but also about the rest of us too. They gave Kevin pain patches, liquid morphine, Valium if he had more seizures, and numerous other things to help. One of our parish priests came by and gave Kevin the sacrament of the sick. I was so sad. This should not be happening to a 17-year-old.

July 10, 2001
Kevin's breathing did not seem good to me today, so I had hospice come back out. They got his pain under control and he seemed a little better. Because I was so scared, I called home my son who lives in Washington, DC. Kevin was not eating or drinking today. I did not know if he was going to make it through the week.

July 11, 2001
Kevin ate a little today, but it was difficult to get him to sit up. The hospice team, on the first visit, had suggested we contact the funeral home to make arrangements. They told us the funeral home might come out to the house---that is what we did on this day. That was such a hard thing to do, but I am so glad they came out to the house. I do not know if I could have handled it, going to the funeral home to do everything.

July 12, 2001
Eating and drinking a little. Hospice ordered a wheelchair and a bedside commode for us. Nurses said he was getting used to the pain meds and he should be a little more alert now.

July 13, 2001
Wheelchair arrived. We were able to get Kevin up and into the living room. Eating a little more.

July 14-15, 2001
Pretty good days, but getting more lethargic.

July 16, 2001
Kevin had quite a few visitors from his school. I was so happy that his friends would continue to come by, even though Kevin was not able to communicate much with them. He was not eating or drinking much, very lethargic, slept a lot.

July 17, 2001
His best friend, Roman, came by today. Kevin seemed to be a little more alert. Was able to smile and hum this little tune he was doing a lot the past few days.

July 18, 2001
Kevin was a little more awake in the morning. Ate pretty good. By evening, he was becoming more lethargic again and beginning to ignore his right side. He was sick to his stomach again. It seems that every day more and more of Kevin is slipping away. He is not talking much at all by this time. He still seems to understand what is said to him. He mostly would say one or two words at a time. I think he is not able to get the words out that he wants because when he does speak, most of the words are jumbled. It is like with a stroke patient. I think he is very frustrated not being able to talk. The hospice team was out again. They actually came two to three times a week to bring supplies, check on us, and mostly just offer support. They would have come more if we needed them.

July 19, 2001
Kevin's psychologist he had been seeing came by to visit today. Kevin is sleeping more and more now. He was sick to his stomach again tonight. He is giving only yes and no moans now. Our parish priest came by tonight.

July 20, 2001
He had a very rough night last night. He was restless and agitated. I needed to give him morphine drops at least three times before he calmed down. He was sleeping a lot today. His yes and no moans are getting less and less.

July 21, 2001
It is getting harder and harder to transfer him. He is so lethargic. It is so hard to see him slipping away every single day, but we continue to tell him how much we love him and that we just want him to be in peace. He seems to understand. He had more of his friends come by today. It is so hard for all of them.

July 22, 2001
He is beginning to have more little seizures in his arms and legs (more like tremors). He is sleeping a lot.

July 23, 2001
Kevin's right arm and leg are becoming quite spastic. We were not able to get him into the wheelchair today. We brought a recliner into his room and my son and I were able to get him transferred into it. The hospice nurse feels he will go into a coma, but she is not sure when this will happen. She hopes he does not have any major seizures, but if he does there are meds to help with that.

July 24, 2001
We had a very difficult time getting Kevin into the chair today. He is beginning to hold his head to one side, and it seems painful if we try ot move it. He was awake a lot today but not very responsive to my questions. He was able to eat and drink some, not much. His cousins from Cleveland came by today.

July 28, 2001
Today was a good day. Kevin was more alert (well, alert for him). He even was able to say a few understandable words. No extra pain meds were needed today.

July 29, 2001
Fairly good day for Kevin 'til the evening. He seemed to be in a lot of pain. He would nod yes when we asked if his head hurt. He was very agitated. It took a while to get the pain under control, but we finally did and he then slept for a while.

July 30, 2001
Kevin is holding his head to the right almost all the time now. The hospice nurse said that his spasticity and these posturing positions are most likely due to the tumor growth. I talked to Kevin's oncologist and he said the same thing. He said we should not try to force him to change positions if it hurts him. He told us the tumor was most likely gettinhg near the brain stem, and when that happened, Kevin would go into a coma and the breathing would stop. When he is not in pain, Kevin still would smile and hum his little tune. What a fighter he is.

July 31, 2001
Kevin is sleeping peacefully almost all day. He looks so calm when he is asleep today. I hope that he will go peacefully and finally be free from this beast that has taken over his whole being. He had a lot of visitors today: friends from school, family friends, the nurse from hospice.

August 1, 2001
More of Kevin's friends dropped by. They have been so good about coming to see him. The sad looks on their faces are more than I can stand though. It is so sad for all of us. Kevin's closest friend from his high school came by later and just sat with him for about an hour. Kevin is only drinking a little water. He will take about half a shake we make for him. It may be my imagination, but his breathing seems to be changing.

August 2, 2001
Kevin has developed a small pressure sore on his right ear from lying on that side so much. My son and I were able to get him to roll on the left side and then prop him up with pillows to keep him off of the ear. The hospice nurse came. She is going to get a pad to put around his ear to keep the pressure off. He is having more changes in his breathing now. He was very agitated again. We all stayed in his room. His brothers are having such a hard time. We are all trying to spend as much time with him as possible. Kevin is not even doing his moans much at all anymore.

August 3, 2001
Able to get him up into the recliner today. He is still not eating or drinking much at all. He still gives us a smile though and sometimes it seems like he is looking right at us and can see us (he has been totally blind since the end of May). He was able to give me a few hugs today, so I feel like he knows what is going on and that he knows that we love him so much.

August 5, 2001
Tonight was another rough night. He was very agitated again. I could not get him calmed down until very early in the morning.

August 6, 2001
Kevin continues to hang on. He is sleeping so much now. He is getting angry when we try to move him now. I think it must hurt him because he acts like it is painful when we have to move him. I try to give him the morphine about a half-hour before we have to do anything like a bath, changing positions, etc., and that does seem to help. More of his friends came by today.

August 8, 2001
Hospice came yesterday, increased his pain patch, and ordered Ativan to help with the agitation. His heart rate continues to increase, his breathing is getting more irregular, and he is having episodes of apnea that last 10-30 seconds. The nurse said that as long as his heart rate is going up, things will probably stay the same. He is not using his left side much now either.

August 9, 2001
Today Kevin's breathing was really changing. His heart rate was still very high though, but now he was running a very high fever. The hospice nurse came out in the morning and she said things looked like it was getting very near the end. But she said that as long as the heart rate was high, it would take longer for the body to shut down. She left and about two hours later he started having seizures. I called her back and she gave him some Valium to help with that. We were using cold compresses to try to lower the fever. Kevin's cross country coach, who was very close to him, called and wanted to come out. We said yes, he could. His coach sat by his bed for at least an hour and talked to Kevin and held his hand and told him what a fighter he was and what an inspiration to all who knew him. At that time, I asked his coach if he would read a poem called "Leave Taking" at the funeral. He was honored to do that. By late afternooon, Kevin's color was changing, his hands and feet were getting cold, and his breathing was getting very shallow. We were all with him those last hours. His two older brothers raised a toast to him, with their Guiness beer, at 11:30 pm and it was at that moment that Kevin took his last breath and finally was free from all his pain and suffering. At the end, Kevin seemed to be at peace. He kind of had a smile on his face to let us know he was OK and with God now.

This is our story and our experience with hospice. I am very glad we were able to keep Kevin at home and we were all with him when he went home to God. We are forever thankful for the wonderful hospice team. They were so caring and concerned, not only about Kevin, but about the entire family and circle of friends.