Tuesday, May 15, 2007

Mother's day breakfast in bed, kindergarten style

french carrots 6x6 hand painted ceramic tile

My little kindergartner has been counting the days until Mother’s Day, he has been telling everyone that he is going to make me breakfast on Mother’s Day. Early on Sunday morning just as I awoke, in walked my little boy with a big plate and a big smile.
In the center of the plate was a carrot. He then ran from the room and returned with a glass of water and a goldfish cracker that he had saved in his pocket from the day before. Then he sat down to watch me “enjoy my breakfast in bed”. As I munched my carrot and sipped my water he proudly bragged to his brothers “now mom won't have to clean up a mess the kitchen”.

Tuesday, May 8, 2007

My Son's Brain Tumor Story

In August 2005, I noticed that my 4 year old son, Jimmy could not see very well. Upon closer inspection we discovered that he could see nothing in his right eye and could see very little in his left eye. His pediatrician told me it was probably lazy eye but I should take him to a pediatric ophthalmologist to be sure. I knew it wasn’t lazy eye! I frantically tried to get him into a pediatric ophthalmologist I called all of them in the phone book. But I was told again and again “if his vision loss was not sudden and if he was not having headaches than it was not an emergency”. No one would see him for a month or more. I knew it was an emergency! I knew something was very wrong! I begged for help, but no one would budge, no one would see him. My husband knew an ophthalmologist who was willing to see Jimmy the next day. He wasn’t a pediatric ophthalmologist, but I was willing to take whatever I could get. The doctor who finally saw Jimmy was surprised at the extent of his vision loss, he suspected that it might be something neurological and arranged for an MRI .

We had our bags packed for a two week vacation we were going to take with our four sons, the first two week vacation we have ever had. We were all very excited especially our youngest, Jimmy who loves to go places. On Thursday we had seen an Ophthalmologist about Jimmy’s vision loss. The Ophthalmologist scheduled an MRI for Saturday morning, we had been planning to leave Friday night but we delayed leaving so we could get the MRI done. We left the house and gave our oldest sons a list of chores to be done so we could leave as soon as we got back from Primary Children's Medical Center where the MRI was to be done. I didn’t really think we would be going on the vacation, I kept thinking Jimmy had a brain tumor. When I had asked the doctor he said it could be a thousand different things and not to worry, we could still go on our trip. But all I could think of was a brain tumor.

Jimmy was still in the middle of his MRI when they called us into a different room. As we entered the room there were several pictures of MRIs on the walls, I saw one in the middle of an obviously large brain tumor in a small child’s head and I thought “what ever they say at least I’m not the parent of that child.” I had been extremely stressed and scared all week, so I had been playing a little game in my head. As bad or as worried as I felt I would try to find someone worse off and say to myself “at least I don’t have it as bad as that person.” But, it turns out I was the parent of that child. The Neurosurgeon was there, I don’t know how he got there so fast. He said they would do surgery Sunday, tomorrow morning to try to remove the tumor. He seemed very concerned about it being so vascular. But it looked so easy to me, on the MRI it was just on the other side of his skull. How hard could it be? You just grab it and pull it out. They took Jimmy straight up to ICU they said he could “get real bad real fast” they said he should be having seizures and he should be paralyzed with a tumor that large.

It turns out that small children don’t always complain of headaches when they have a brain tumor, someone should tell all those ophthalmologists that.

Jimmy is a very charismatic child; I’m not just saying that because he is my child, even when compared to his extraordinary brothers, he has a remarkable way of charming all the adults around him. So he quickly became a favorite in the ICU. That night I went home, they don’t usually let parents stay in the ICU. But, Jimmy was doing well and really wanted his dad there so the nurse let dad stay. Jimmy can be very persuasive. My brother had taken my other kids to stay with him, so I came home to an empty house. I have never felt so alone and afraid in my life. I walked into the dark house and just collapsed on the floor sobbing. I did not think I would be able to sleep, but I was exhausted and fell to sleep. I had a dream that after two hours of surgery the doctor came and gave us bad news, when I woke up and it was all I could remember of the dream, I not remember exactly what he said I just remembered it was very bad. I got back to the hospital before 8am Jimmy appeared to be having a great time except he was hungry. He had not eaten anything since Fri. night and they still were not letting him eat. Before they took Jimmy into surgery he began to get upset. I think he could tell I was upset even though I had tried very hard to hide it. He crawled into my arms and fell asleep. They took him into surgery still sleeping from my arms.

The surgical waiting room is very large and very quiet and deserted on a Sunday. We sat there alone in the dark room next to the desk where the receptionist usually sat but there was no one at the desk that day. The surgery was supposed to take 4-6 hours. Someone would call from the O.R. every hour or so to tell us how the surgery was going. We got the first call to tell us that everything was going very well. We got a second call telling us that everything was going very well at about one hour and forty-five minutes into surgery. After that call I finally felt I could relax a little. Two hours into surgery the neurosurgeon walked into the waiting room and told us he could not get the tumor out the tumor was bleeding too badly and if he kept trying Jimmy would die. When my husband asked if Jimmy would live the doctor said “I can’t say”

We spent the next two days in just watching our little boy die. I felt like that is what we were doing, watching him die. 4 year-old Jimmy was being kept in a drug-induced coma. They told us that possibly they would be able to shrink the tumor with chemotherapy but I knew we did not have that kind of time. I kept thinking that there had to be some way to cut off the blood supply to the tumor. It is so frustrating to feel so helpless. We had been asking everyone I knew to pray for Jimmy I felt that was all I could do fast and pray, sometimes that is enough.

On Tuesday the neurosurgeon came in and said “we can’t leave him like this” and told us how he wanted to have a doctor come from LDS Hospital and put a tube through Jimmy’s leg, through his veins and into his brain to try to block off part of the blood supply to the tumor. It was extremely risky; Jimmy’s veins were so small. They scheduled the procedure for the next morning and another brain surgery for that afternoon. The surgery was supposed to take 6-8 hours and they had four neurosurgeons lined up for the operation Jimmy would probably be paralyzed on his right side it may or may not be permanent. It was all very scary stuff.

I went to bed that night and had a dream that the doctor came in after 2 hours of surgery again, only this time the news was good

The procedure in the morning went splendidly. There were two arteries feeding the tumor they were able to block one of the arteries and a bunch of veins coming from the other one. During the brain surgery I remember sitting in the surgery waiting room feeling more anxious than scared, waiting for two hours to be up. I just knew that it was going to be alright. I knew the neurosurgeon would be out in two hours. About two hours later the neurosurgeon was there with a smile on his face. “It was like night and day, I didn’t even have to touch the brain” he said. The anesthesiologist said “it was so easy it was almost boring” another doctor said “it was like the tumor just fell out.” I knew our prayers had been answered.

When we got back to ICU Jimmy’s nurse was literally jumping up and down for joy! she did not know the outcome of the operation, but she knew surgery was over in just two hours and they only used one unit of blood so she knew it had to be good. I told her what happened and she just cried. Jimmy was kept in a coma for 3 more days. I was getting concerned because he had not eaten for more than seven days. They weren’t feeding him I.V. because they were having trouble with his sodium levels. They weren’t feeding with a tube because they were afraid of moving him. I voiced my concern to one of the nurses and she said “It’s ok for them to go without food for a few days, I’ve even seen them go as long as week without food” I pointed out that it had been over a week since he had any food, they had only been counting since the last surgery. We got a feeding tube in and the next day they started letting him wake up. One of the first things they checked is if he could move both sides of his body. He could! Jimmy was not paralyzed! He only had a very small amount of weakness on his right side. When one of the neurosurgeons saw that Jimmy was not paralyzed he just shook his head and said ”how did that happen?” everyone was amazed at how well Jimmy was doing.

Just three days after Jimmy awoke from his coma, I was walking down the hall to Jimmy’s room when one of the nurses saw me and said “good news! It looks like he will be going home today” I thought she had obviously mistaken me for someone else’s mom. I was wrong! they sent Jimmy home that day, after 10 days in a coma and two weeks in the hospital we had him home. He could barely walk 2 steps, he could not remember how to talk but within a month you would not know he ever had these problems.

Jimmy has had two additional surgeries on his little head but is still with us he is doing very well*

*When people ask how Jimmy is doing I “say he is doing very well” I always feel as though I should put an asterisk there. If you had described how Jimmy is doing now to me before we discovered his brain tumor I would never have described it as “doing very well” He is blind, half bald from radiation, has some memory problems, cognitive problems and endocrine problems but he is doing very well considering everything, and we are very happy about it.