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My name is Joshua Newcomb. My 10-year-old daughter Julia is sick with Pulmonary Hypertension, Systemic Juvenile Idiopathic Arthritis, and an unknown Autoimmune Disease. I had hoped to get through these hard times without asking anyone for help, but after 2 year I found I really needed help paying for increasing medical bills and medically required travel to various hospitals around the country and so I decided to setup this fund for her. Julia said she wanted to write her own explanation of what is going on, so here is Julia’s Story from her perspective…thank you all!
Julia’s Story
My name is Julia Newcomb, I am 10 years old and finished grade 3 even though I didn’t go to school the last 2 months this year. I am on the Honor Roll. I have a sister named Madelyn she is 14 years old. She is everything you would want a sister to be.
About 2 years ago I just didn’t look right. My skin looked a little yellow and grey. I went to the Pediatrician, Dr. Pearson, and she said everything looks fine, your labs are normal. But I wasn’t feeling too well, I was tired, and then one day in January just about the time of the South Florida Fair, I started vomiting and everyone thought I had the stomach flu. I went to the emergency rooms several times but the vomiting didn’t stop so I was admitted to Palms West Hospital. I started feeling much worse and was admitted into intensive care for 2 weeks, I kept vomiting and had fevers all day long. After seeing a lot of doctors there and having an IV put in my leg the doctors said “We don’t know what to do”. The doctors decided that my labs didn’t look good and that I wasn’t doing well so they sent me to Miami Children’s hospital in a helicopter.
I was in intensive care in Miami Children’s for a week, I had many tests. I had a PET scan, CT scans, MRI, bone marrow test and blood tests. I had a PICC line put in my arm, I didn’t like that. I continued running fevers every day and vomiting, I didn’t eat anything for over 3 weeks. I lost a lot of weight. I met Dr. Rivas Chacon, he is a rheumatologist at Miami Children’s hospital. He said that he thought I had a disease called Systemic Juvenile Idiopathic Arthritis. He decided to give me a lot of steroids through my IV, that made me feel better in 24 hours and I ate for the first time. Food tasted so good. I stayed there on the pediatric floor for another week and then on Valentines Day I got to come home at 10:00 at night.
I have had many trips to Miami Children’s since then, I have gone for many, many medication infusions, for labs and to see Dr. Rivas Chacon. He gave me 3 different types of medications over the past year but they only worked for a short while and then stop working. When I am not taking medicine I feel really bad, I have body aches, my joints hurt and I have high fevers and I just stay in bed. In March of this year Dr. Rivas Chacon said that the medication should work but they are not working so something else must be wrong or this is the wrong diagnosis. He increased the amount of steroid I was taking. I hate the side effects, the medicine keeps me awake, makes me have anxiety and makes my face swell and look stupid.
In mid-March I started getting very tired and couldn’t ride my bike or run and play like I used to. I had a chest x-ray and everything was OK with that, I had labs and they were what the doctor expected. I was totally out of energy, went to school but couldn’t go to PE because it made me too tired. My fingers and toes started to look a little blue so I went back to see Dr. Rivas Chacon and he admitted me back into Miami Children’s again. I saw many doctors they thought that my problem with breathing. They put me on oxygen to help. They thought that maybe this was caused by the medication I had been taking for the SJIA, so they tried to fix it with more steroids but it didn’t work. Now I am needing to be on oxygen all the time, without the oxygen I get really out of breath. I went home for a week to see if I would get better but I didn’t. I was admitted to Miami Children’s again after that week, I had more tests and a cardiac catherization when it was discovered that I have pulmonary hypertension. So the doctors in Miami decided I needed a lung biopsy to see what was going on but they didn’t want to do it. They decided that I needed to come to Children’s Hospital of Philadelphia (CHOP) for a lung biopsy and to see the Pulmonary Hypertension Doctors there because it is the Pulmonary Hypertension Center of the World for Children. At CHOP, I saw a rheumatologist here that has decided that I have a kind of vasculitis that has caused a problem in my lungs. I have an airspace problem and cannot get the oxygen across to the capillaries. He decided that the best treatment will be chemotherapy. I got the treatment for about 5 months, but it stopped working. Just this past month the Doctors decided to put me on a new form of the treatment in hopes that it will fix me, but I can’t go to school and I have to do all my school work from home. I did get to go in to school for 1 hour and get my school picture though!
I hope that I get better soon and get off this oxygen and steroids because they prevent me from doing a lot of the things I like to do. Since I have been sick I spend time reading, drawing and painting. Some of the things I am looking forward to when I get better are going outside, walking around, shooting my bow and arrows, going to church, going to the movies, going to the library, riding my bike. I’m a 10 year old girl that is thankful for all the doctors that have been taking care of me and thankful for all the prayers from my family and friends. The prayers really have helped me through all this. I prayed during my time in recovery from the biopsy and God helped me with the pain.
I wrote a letter of appreciation to CHOP thanking everyone here who helped me and my family get through the hardest time in our lives. I think that CHOP might just become the best hospital in the whole world for children. This is my story.
Julia Newcomb
Julia’s Story
My name is Julia Newcomb, I am 10 years old and finished grade 3 even though I didn’t go to school the last 2 months this year. I am on the Honor Roll. I have a sister named Madelyn she is 14 years old. She is everything you would want a sister to be.
About 2 years ago I just didn’t look right. My skin looked a little yellow and grey. I went to the Pediatrician, Dr. Pearson, and she said everything looks fine, your labs are normal. But I wasn’t feeling too well, I was tired, and then one day in January just about the time of the South Florida Fair, I started vomiting and everyone thought I had the stomach flu. I went to the emergency rooms several times but the vomiting didn’t stop so I was admitted to Palms West Hospital. I started feeling much worse and was admitted into intensive care for 2 weeks, I kept vomiting and had fevers all day long. After seeing a lot of doctors there and having an IV put in my leg the doctors said “We don’t know what to do”. The doctors decided that my labs didn’t look good and that I wasn’t doing well so they sent me to Miami Children’s hospital in a helicopter.
I was in intensive care in Miami Children’s for a week, I had many tests. I had a PET scan, CT scans, MRI, bone marrow test and blood tests. I had a PICC line put in my arm, I didn’t like that. I continued running fevers every day and vomiting, I didn’t eat anything for over 3 weeks. I lost a lot of weight. I met Dr. Rivas Chacon, he is a rheumatologist at Miami Children’s hospital. He said that he thought I had a disease called Systemic Juvenile Idiopathic Arthritis. He decided to give me a lot of steroids through my IV, that made me feel better in 24 hours and I ate for the first time. Food tasted so good. I stayed there on the pediatric floor for another week and then on Valentines Day I got to come home at 10:00 at night.
I have had many trips to Miami Children’s since then, I have gone for many, many medication infusions, for labs and to see Dr. Rivas Chacon. He gave me 3 different types of medications over the past year but they only worked for a short while and then stop working. When I am not taking medicine I feel really bad, I have body aches, my joints hurt and I have high fevers and I just stay in bed. In March of this year Dr. Rivas Chacon said that the medication should work but they are not working so something else must be wrong or this is the wrong diagnosis. He increased the amount of steroid I was taking. I hate the side effects, the medicine keeps me awake, makes me have anxiety and makes my face swell and look stupid.
In mid-March I started getting very tired and couldn’t ride my bike or run and play like I used to. I had a chest x-ray and everything was OK with that, I had labs and they were what the doctor expected. I was totally out of energy, went to school but couldn’t go to PE because it made me too tired. My fingers and toes started to look a little blue so I went back to see Dr. Rivas Chacon and he admitted me back into Miami Children’s again. I saw many doctors they thought that my problem with breathing. They put me on oxygen to help. They thought that maybe this was caused by the medication I had been taking for the SJIA, so they tried to fix it with more steroids but it didn’t work. Now I am needing to be on oxygen all the time, without the oxygen I get really out of breath. I went home for a week to see if I would get better but I didn’t. I was admitted to Miami Children’s again after that week, I had more tests and a cardiac catherization when it was discovered that I have pulmonary hypertension. So the doctors in Miami decided I needed a lung biopsy to see what was going on but they didn’t want to do it. They decided that I needed to come to Children’s Hospital of Philadelphia (CHOP) for a lung biopsy and to see the Pulmonary Hypertension Doctors there because it is the Pulmonary Hypertension Center of the World for Children. At CHOP, I saw a rheumatologist here that has decided that I have a kind of vasculitis that has caused a problem in my lungs. I have an airspace problem and cannot get the oxygen across to the capillaries. He decided that the best treatment will be chemotherapy. I got the treatment for about 5 months, but it stopped working. Just this past month the Doctors decided to put me on a new form of the treatment in hopes that it will fix me, but I can’t go to school and I have to do all my school work from home. I did get to go in to school for 1 hour and get my school picture though!
I hope that I get better soon and get off this oxygen and steroids because they prevent me from doing a lot of the things I like to do. Since I have been sick I spend time reading, drawing and painting. Some of the things I am looking forward to when I get better are going outside, walking around, shooting my bow and arrows, going to church, going to the movies, going to the library, riding my bike. I’m a 10 year old girl that is thankful for all the doctors that have been taking care of me and thankful for all the prayers from my family and friends. The prayers really have helped me through all this. I prayed during my time in recovery from the biopsy and God helped me with the pain.
I wrote a letter of appreciation to CHOP thanking everyone here who helped me and my family get through the hardest time in our lives. I think that CHOP might just become the best hospital in the whole world for children. This is my story.
Julia Newcomb