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Jacob--My Life, My Teacher, My Angel
May 01, 2002

My name is Cris, My 3 year old son Jacob was diagnosed with a brain tumor in September 2001 and passed away on March 13, 2002. Jacob went through 7 months of torture with his treatments and sickness caused from his treatment and in the end died. He has been gone for a month and 2 weeks and I am lost without him. Jacob was my life, my teacher, my angel. He was diagnosed with a metastatic medulloblastoma on September 4th (labor day weekend). Had brain surgery on September 6th to remove the tumor than on September 12th had a shunt put in to releave the pressure from the fluid in his head. He was on a Morphine drip during this stay due to pain. He recieved his first dose of chemo 1 week after surgery and his hair fell out from the large dose given, 19 days later he was released from the hospital and we went home. 8 hours later we were back in the hospital because he got a staph infection that looked like someone had poured hot grease all over the back of his head and neck. His poor little body suffered so much. While we where still in the hospital with the infection he was transfered to University Hospital in Denver daily by ambulance for Radiation. The radiation burned his skin, gi track, his ears blistered and they had to put him under everyday so he would be still. The radiation made him vomit at least 2 times an hour and diarrea. He tried his hardest to eat but would just throw up. He would ask me are we going to take a nap today and get pictures of my bones (that is how I explained radiation to him)because the relief that he got from being put under was such a relief to him and his pain. He completed 31 radiation treatments all the while getting chemo at the same time during this time we ended up in the er with 105 temps and no blood counts. He finished radiation on November 12th and had 4 weeks off treatment for counts to recover. The radiation treatment that he recieved could cause brain damage because of the high amount given at each setting and mri showed severe scare tissue where the tumor was. His next course of treatment was high dose chemotherapy. This was the start of Jacobs decline. Jacob was to go through 3 courses of treatment. He only completed 1. The 1st course was given the week before Christmas than on Christmas eve he was given bone marrow transplant which was made up of his own stem cells that where collected on his 1st stay in the hospital. Christmas Eve Jacob had been crying that his teeth were hurting. I had a feeling this was our last Christmas with Jacob. I think god gives us this insight so we are able to make the best of everything for our children and able to cope with the end. The Christmas day Jacob was soooo sick he was in so much pain. I gave him morphine throughout the day and night. I took him to the hospital the next morning. He was not running a fever so they were not going to admit him but his doctor did notice a few mouthsores which were common with the type of chemo he was getting. I insisted that something was not right. An hour later Jacob's mouth was full of sores and you could not tell the difference between his gums and his teeth because everything was sloafing off he was admitted that day December 26th he stayed in the Bone Marrow Transplant Unit for 10 days when I said to his nurse Jeanne he should be getting better by now and she ageed. The night before I mentioned that Jacob had talked to me for 22 hours straight. He talked to me about everything and he talked to me about nothing. He was a smart boy. That morning when I mentioned to Jeanne that things should be improving she took his blood pressure and it had bottomed out and he started to breath shallow. they rushed him down to the ICU and his doctor told me "if he goes to icu and the vent him, he will die" I will never forget that moment. Jacob was still aware of what was going on so I could not lose it I had to be strong for him. I spent the next 12 hours listening to the doctors talk of his odds what they had to do. Finally he was stable at 12am they told me to go to a sleep room. I had done this one time before when he was in the ICU for his 1st surgery and at 4am they came knocking that he had crashed. Well I told them I would not go to a sleep room and the doctor insured me that Jacob was very stable. Well at 4am they came knocking again and it was a tech I asked if Jake was OK she said you better just come right away. I ran down the hallway thinking he was already gone. They had vented him. The irony of this is the day he was put in ICU my family was meeting with the doctors to put a do not resusitate on him and the nurse came running in that Jacob was awake and asking for me. If that do not resusitate was finished I would not have gotten the precious time I did with him. He was on that vent for 4 days. The doctors gave him 24 hours to live. They said we need to say our goodbye and the nurses made it possible for me to lay next to him in bed because I had stayed with him in the hospital and always slept in bed with him it was a great comfort for me and I think it made him want to hold on a little longer because he did not leave us in 24 hours he had unfinished business on this planet. The chemo that he was given the week before christmas had caused liver failure which was now leading to renal failure. My husband and I had made the decision not to torture him any longer if there was no hope so we spent the night telling him how much he ment to us and what a special child he was. The next morning they did his labs and his liver numbers had gone down only slightly but that was enough for his doctor to look at other options. Next thing I know Jacob has 8 doctors around his bed and they are telling me the 2 options we have. 1 use an experimental drug that they don't even know is available or 2 do a liver tap so they can get blood moving through his system again. Both are very dangerous and can cause death but that is what we had. They had to call around the world to get this drug which ended up not being available but sitting and talking with his doctor the morning he broke the news that the only option was the tap he had a revalation. He had another drug flown in from another state and it improved Jacob just enough to give his body the time it needed to survive. Jacob gained 16 pounds of fluid while on the vent and they had to tap his belly to try and drain this fluid so his lungs would not colapes from the pressure but the tap could cause infection because he had no counts. He survived this and we spent 10 days in the ICU and finally got out of the hospital January 20th. From the stay in ICU and the hospital Jacob could no longer walk and his feet where locked in a pointed postion. When we came home from this visit Jacob was a different child, he was depressed and had anxiety. This was the hardest struggle for me. Through all of this hell Jacob always kept his sense of humor and still made all of us smile. If he could do it I could do it. I felt after this visit it had broken his spirit and he had given up hope. He did not like the fact that he could not walk or even hold him self up for more than 5 or 10 minutes. He would watch his sister and his cousins play and just get so upset. I remember one time we were playing ring around the rosie and I just hear Jacob starting crying. I asked him what was wrong and he said he wanted to play so bad and he was so sad because his legs couldn't hold him. Continue on next page
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