Brandon Alexander Salazar, born in Phoenix, AZ on 5/23/04, at Good Samaritan Hospital,weighed 9lbs 4 oz. He had a full head of curly hair and a face you could easily fall in love with. He was a very happy baby and made his Dad and I so glad to have him in our lives. As months went on Brandon began to show his different personalities. We could tell when he was hungry, upset, bored, or just had a dirty diaper. He would let everyone know when he was hungry!! His favorite foods were mash potatoes and sweet potatoes. Oh man I could not have mash potatoes on my plate without him making it clear that I better give him some. This munchkin was the joy of my life. He used to yell at the top of his lungs when he would play. Not because he was upset, but because that's the way he expressed his happiness. I remember thinking to mysef, this little boy is going to be a handful, but I was ready to take on what he brought my way. One morning Brandon and I were on our way to his babysitters (my sister) when he became very lethargic. Brandon was 10 months old at the time. I remember looking back into his carseat and seeing his head slummped over. I didn't think much of it cause it was 5 am and I thought he was sleeping. After a while of him not getting better, I took him to the hospital. All they could tell me was that he probably just has a virus making him weak. One day goes by and mother's intuition tells me something is still not right with Brandon. So by the advise of his pediatrician we took him into Phoenix Children's Hospital. We then found out that he was having seizures. They did several test on him which included MRI, EKG, EEK, CT, spinal tap, and several blood tests. Everything was negative or normal and all they would come up with is that he had a virus and which caused encephalitis (inflamation of the brain). Brandon could not sit, hold his head up, or hold his bottle. All this would be corrected by therepy. He was sent home 6 weeks later on a couple of meds for seizures and acid reflux that would be caused by seizure med. His stay here was from 3/05 - 4/05. About 3 months go by and Brandon starts to regress. A bad feeling again says to take him back to PCH. They ran another MRI which showed that he had more brain damage done. He then started to have a grand maul seizure which puts him ICU. He was given heavy doses of drugs to stop the seizures. He was in a drug induced coma and placed on a vetilator to breath. During this time another EKG, EEG, CT and spinal tap were perfomed. This time new tests were performed which included a brain, muscle and skin biopsy. Nothing was conclusive. All they could tell us was that he had a virul infection that caused Encephalitis and it left his body before the tests were performed, so no definite diagnosis could be given. The effect of the grand maul left him with 80% brain damage, loss of eyesight, and could not eat by mouth so a g-tube was placed in his stomach. Doctors did not think he was going to make it after the ventilator was taken off. That day when the doctors had told us that, he was taken off and miraculously started breathing on his own. We were so excited! But now had to prepare ourselves for our new lives. Brandon was completely disabled and would probably never walk , talk, eat, see or sit on his own. We were ready though to take on whatever God had in store for us. We loved him no less and were just happy that we were going to take him home. The time spent in Pch this time was 6 weeks 8/05-9/05. Our new lives at home consisted of tube feedings every 4 hours and medications that you wouldn't think a child can bare. Brandon was a fighter though. He was ready to take on the world. He would attend speech, occupational, and physical therepy about 3 days a week. He also had several doctors appointments with neurology, gastrointerology, pediatrics, and opthomology. This little boy had a very busy schedule. Brandon still suffered from seizures the whole 2 1/2 years he was sick. He had about 20-30 a day. He was allergic to the top 3 seizure meds used in kids. He wasn't giving up though. He was a fighter. He was in and out of the hospital for EEG's, MRI's and to try a diet called ketogenic diet that is known to help those kids that have seizures like his and can't seem to find the right drug to help them. Again Brandon took it with a grain of salt and didn't give up. He was what some call a pillow angel. He spent most of his time on a pillow. He knew how to cry and would crack a smile every now and then. I could always tell though in his eyes that he was happy. As the years went by Brandon was pretty much stable, besides the seizures, his brain damage was not getting any worse. But we still had no answers. I came to terms with that and was just happy to have him here. July 12th 2007 Brandon starts to have very high fevers around 102-103. This was out of the norm because he hadn't had a fever in over a year. I decided to give him tylenol hoping that maybe he just had a bug. As the day goes by his fevers do not subside. I was at work and his dad calls me to let me know how high his fevers were. They were about the same all day and tylenol was not doing much for him. I told his dad I thought we should take him to PCH just to be sure there were no underlying causes of this fever. He had a bad feeling and didn't want to take him for fear of him not coming back home because of our other experiences the years before. We didn't have much of a choice though. We got to the ER at PCH and just the feeling of being here again was uncomfortable. Although we loved the hospital, we would rather not have to come here. The first thing the docs did was a chest x-ray. They noticed some wheezing in his chest and wanted to be able to rule out the flu or the common cold. When the results came back, they said he had pneumonia. That name sounded scary and worried me. But I just figured, ok give him meds and make him better. They decided to admit him because his breathing was kind of shallow and because of his disabiltites they didn't want to take any chances. He was placed on a small amount of oxygen with a tube in his nose. A couple of days go by and he seems about the same. By the end of this week his skin starts to become jaundice. The doctors ordered some blood work. Results came back and showed that his red, white cells, platlets and plasma were kinda low. They weren't too concerned with it. They had thought maybe one of his seizure meds was causing this and effecting his liver. A couple more days go by and his counts are even lower. They now decide to give him a blood transfusion to see if this would help. The doctors the next morning came in to do there rounds and noticed that his spleen was a little enlarged so another x-ray was ordered. The x-rays confirmed his spleen was enlarged and so was his liver. Blood work was ordered to determine how bad his liver was, and at this point the tests showed his liver was not functioning well, but it could still improve. So as the day's go by doctors still can't seem to figure out what's going on. There throwing out the possiblity of hepatitis, ebstein bar, and just a virus that has left the body again that can no longer be detected. His jaundice is getting worse and is now starting to retain fluids. At this point Brandon was not well at all and it was decided that he needed to be moved to the ICU so that he can be on constant watch. The doctors decide to take him off all of his feeds and start IV fluids. This doesn't seem to help him at all. He gained 10 lbs in about 2 weeks, just by retaining fluids. During this time Brandon's blood counts seem to be getting worse so he is transfused about 3 times a day with red blood cells, plasma, and platelets. It seems to hold him over to the next day, but is continuous the whole stay in the hospital. The next morning Brandon's pediatrician comes in and tells me that she thinks she found out what is wrong with him, but that the hemotologist would need to come speak with me on this particular illness. The illness was called Hemophagocytic lymphohistiocytosis. Histiocytosis is a rare blood disease that is caused by an excess of white blood cells called histiocytes. The histiocytes cluster together and can attack the skin, bones, lung, liver, spleen, gums, ears, eyes, and/or the central nervous system. The disease can range from limited involvement that spontaneously regresses to progressive multiorgan involvement that can be chronic and debilitating. In some cases, the disease can be life-threatening. In some ways, histiocytosis is similar to cancer and has historically been treated by oncologists with chemotherapy and radiation. Unlike cancer, histiocytosis sometimes goes into remission without treatment. The vast majority of people diagnosed with histiocytosis are children under the age of 10, but it is also found in adults of all ages. It is approximated that histiocytosis affects 1 in 200,000 children born each year in the United States. This illness is so rare, there is little research into its cause and treatment, and it is often referred to as an "orphan disease," meaning it strikes too few people to generate government - supported research. At first it hadn't sunk in how bad this disease was. And it wasn't a definite diagnosis. The test's performed for this disease was a bone marrow biopsy. The first test was negative, but docs were almost positive that this was the diagnosis. He showed all the signs of the illness, so they decide to treat him anyway. They started him on antibiotics and chemo therepy. As most of us know, chemo is like poison to the body, but it was the only treatment available. The first dose of chemo seemed to go well. But now his lungs were starting to fill up with fluid. Docs decide to put him on a new breathing machine to open up his lungs. This required for him to be on a paralydic. Brandon could not feel anything, but he knew we were there. That day the on-call ICU doctor came and said that he needed to speak with Alex and I. We were about to have the most difficult conversation no parent should ever have to have. They wanted us to decide if we wanted Brandon to be DNR, do not recusitate. How does a parent come to a decision like that? Me and his father talked it over and felt that our son was suffering too much and if God was ready to take him and if his body could not handle it anymore then he could go. We knew he couldn't fight anymore. A couple days go by after the chemo and Brandon seems a little better. His blood counts were back up and the only thing not functioning well was his liver. That gave me some hope. But I had to understand that without his liver he would not survive. He was not a candidate of liver transplant because of the extensive brain damage he had already sustained. I had to come to terms that he might not survive. They performed another biopsy and this time did a spinal tap. The reason for the second test is because with this disease a lot of times it will not show up in the bone marrow right away. Unfortunately this time it was positive. They were not sure though if he had the genetic form of the disease or what they call the secondary form that is just brought on by a virus. After 2 years we finally have an answer. We can now continue with the treatment. The second dose of chemo is given on 8/4/07. That night Brandon's blood pressure goes from extremely high to extremely low. Blood pressure meds were started, but this was just a sign that his organs were starting to fail. The meds were just keeping him alive. Me and his dad had to now let the doctors know when enough is enough. We decided to stop the heart med, and if he is meant to live his heart will keep going. His dad and I both sat next to him and let him know that it was ok for him to go if he was tired. We let him know how much we loved him and how much we are so happy that he held on as much as he did! The most difficult thing for a parent to have to do, is say good-bye to your child. With a room surrounded by myself, his father, aunts, uncles, cousins and many friends Brandon passed at 5:05 pm on 8/05/07. He lived his life like a pillow angel, but he didn't mind it. He was always very calm and very loving. Although we never knew what he was thinking, we always knew in his eyes that he was happy. Brandon would of started pre-school the day after he passed away. There's so much we had planned for him, but unfortunately God had other plans. His life on earth was just for a moment, but in my heart he will always be. The reason I am doing this tribute is to let the world know how PROUD I am of my son. He was very strong and courageous, and I am so glad God brought him into my life even if it was for a short while. He faught so long for his dad and I. He took a piece of my heart that will never be replaced. His dad and I will always love him and he will forever be in our hearts. Rest in peace my "Tweet Heart!"