TrinityJane's DIPG Cancer Fund
Donation protected
On March 28, 2018 our one and only daughter Trinity Jane was diagnosed with a rare form of brain tumor called Diffuse Intrinsic Pontine Glioma known commonly as DIPG.
DIPG facts:
DIPG or Diffuse Intrinsic Pontine Glioma is a rare, inoperable brain tumor found in the brain stem known as the pons. The pons is responsible for vital functions such as breathing, swallowing, coordination, balance and heart rate. It primarily affects children between 5-11 Years old. Teens and adults can have DIPG although its extremely rare. DIPG is considered terminal with only 9-12 months median survival of patients upon diagnosis. Only 10-20 % of DIPG patients survive up to two years. For more information on DIPG visit http://dipgregistry.org/patients-families/about-dipg/dipg.org .
Our Family:
I am TJ Pelagio, a restaurant manager in the Philippines and my wife is Che, a work-at-home mom. Trinity was born approximately 3 years after we got married so you could say that having her was long overdue. She is the first grandchild on both sides and very much the big doting sister to all of her four cousins.
Trinity likes YouTube videos, video games, Steven Universe, Adventure Time, Star Wars, Harry Potter, Barbie and slime and crafting among other things . It really does not make sense how she got sick because her favorite food consists mainly of healthy food such as fruits, fish, broccoli, and yogurt (she would say she prefers it over ice cream).
How it started
The month of March 2018 started very busy for Trinity with the final exams and the last days of school approaching. We thought she was just being stressed out when she complained of headaches throughout the day. Then we noticed she was beginning to tilt her head on to one side when she which we thought as plain old mannerism. But during the course of another week she began vomiting. She vomited almost everyday during the mornings and sometimes after eating in the afternoon. This prompted us to take her to the clinic where the pediatrician told us to keep her from eating dairy and chocolates due to stress. Same doctor also sent us to see an eye doctor to test her vision to see if it was causing the headaches. The ophthalmologist told us there was nothing wrong with her vision so that left us with the dairy abstinence. After that first trip to the doctors we were optimistic that everything was just part of her puberty acting up. The next few days there was no vomiting but she was still in pain. Her headache made her didn't want to get out of bed and it was that time that school was over so she was just lying in her room most of the time. One day she and Che went to her school to pick up her final school cards and then decided to meetup with her classmates at the mall. They went and did what normal kids do at the mall, arcade, frappuccinos, and even "nerf tag". During lunch time after eating a lot of chicken wings, Trinity asked to go to the restroom and then suddenly threw up everything she ate. Che knew then we needed to take her back to the doctor. We decided to consult a new pediatrician recommended by Che's sister. The new doctor noticed she had sinus problems which may contribute to her headache but asked us to do a CT Scan to put our worries to rest. It was after that test it seems, that our worries escalated to pure horror and shock. The scan detected a mass in in her brain and we were told to get an MRI to get a more detailed image of the mass. These terms were very new to my wife and me: MRI, CT Scan, and it was even our first time to ride an ambulance that day as the MRI service was not available in the hospital that we were admitted.
The Diagnosis:
Like I said, everything was very new to us and all these medical stuff were being shoved to our brains very fast. I do not know how MRI scans go but after taking Trinity through a stretcher inside a noisy machine for 1 hour, we got handed the big envelope where the negative prints were and a piece of paper which contains what looks like an initial analysis of the image that was taken of my daughters brain. I saw my wife’s hand weaken as she read the paper, almost dropping it in the process. I took it from her and read it and saw the words tumor and “blastoma” which I would come to know later as synonymous with cancer. After the scan we found out that pediatric neurologists were very few in this country and we would likely see the one who could read the scans to us within the next 48 hours. Our kind doctor recommended that if we wished, we can move her to another hospital if we knew another pedia neurologist who can take our case. Luckily, Che has good friends in the medical field and they have helped us get transferred to a better hospital and coordinated for us to get our diagnosis sooner. Nothing could have prepared us the for the worst news of our lives. We got to be introduced to four dreaded letters:D.I.P.G. It is a rare form of brain tumor that is inoperable and incurable. I can remember holding back my tears as I listened to the doctor explain to us all these medical terms some of which I really did not bother to listen. As soon as the words “9-12 months to live” was mentioned my mind just involuntarily shut itself and dread and shock came over. I remember my wife was blankly staring into the doctors eyes. She was repeating her words and struggling to form new sentences to say.
We were advised that the prescribed treatment is 30 sessions of Radio Therapy which blasts the tumor with concentrated X-rays with the purpose of attempting to shrink the tumor down to size but never actually taking it out. We were told that after the therapy Trinity may experience alleviated symptoms for a couple of months. Che asked what I was thinking: "what happens after that?” to which the Doctor replied "then we may expect her symptoms to gradually worsen afterwards". I can hear my heart broke into thousand pieces.
Our Plan:
It has been almost two months since that fateful day at the hospital and we are already on last week of Trinity's Radio Treatment sessions. I have spent that time researching learning more on this disease and what other options do we have. I have learned that in the US and Australia, children with DIPG have undergone clinical trials which means that while it has no cure yet, kids together with their parents are fighting to find it.A little over a year ago Che and I were working and saving up to migrate to Australia. I qualified for a skilled migration program and all the money we earned the past year up to now has been put into this endeavor of ours. Now that we are days away from getting our visa approved, our plan is to go to Australia and look for more options for Trinity's treatment. We have only saved enough to support us for a few months until we get settled in this new country and with my daughter's condition it is certain that our medical expenses will accumulate really fast. So we want to be prepared. More over, Trinity will begin to have special needs when her symptoms come back and we would like for her to be as comfortable as possible and again come prepared.
How you can help
My wife and I are asking everyone who reads this to help us extend our daughter's life. Help us bring her to Australia to look for more treatment and at the same time make more experiences with her in this new country. She is the only one we have and she has been the motivation for every single thing we have done in our lives. She is so excited to come to Australia and she is even planning everything she is going to do there even how her room is going to look like. She has a heart of gold and a soft spot for all animals which makes her a perfect fit to live there. Help us make her wishes come true. With your donations, our family can hit two birds in one stone:1. Look for clinical trials in Australia which may and can extend her life, and 2. fulfill Trinity’s bucket list and experience more of the country making her life full of memories and moments with us. We hope that this fund raising campaign will be successful so that we can spend more quality time with Trinity without the stress of worrying about the finances.
No amount is too small. Your kindness and generosity will surely get us through this trying time in more ways you can ever imagine.
We thank you for the time you took to read this and we hope that God rewards your kindness.
Please click the share button.
DIPG facts:
DIPG or Diffuse Intrinsic Pontine Glioma is a rare, inoperable brain tumor found in the brain stem known as the pons. The pons is responsible for vital functions such as breathing, swallowing, coordination, balance and heart rate. It primarily affects children between 5-11 Years old. Teens and adults can have DIPG although its extremely rare. DIPG is considered terminal with only 9-12 months median survival of patients upon diagnosis. Only 10-20 % of DIPG patients survive up to two years. For more information on DIPG visit http://dipgregistry.org/patients-families/about-dipg/dipg.org .
Our Family:
I am TJ Pelagio, a restaurant manager in the Philippines and my wife is Che, a work-at-home mom. Trinity was born approximately 3 years after we got married so you could say that having her was long overdue. She is the first grandchild on both sides and very much the big doting sister to all of her four cousins.
Trinity likes YouTube videos, video games, Steven Universe, Adventure Time, Star Wars, Harry Potter, Barbie and slime and crafting among other things . It really does not make sense how she got sick because her favorite food consists mainly of healthy food such as fruits, fish, broccoli, and yogurt (she would say she prefers it over ice cream).
How it started
The month of March 2018 started very busy for Trinity with the final exams and the last days of school approaching. We thought she was just being stressed out when she complained of headaches throughout the day. Then we noticed she was beginning to tilt her head on to one side when she which we thought as plain old mannerism. But during the course of another week she began vomiting. She vomited almost everyday during the mornings and sometimes after eating in the afternoon. This prompted us to take her to the clinic where the pediatrician told us to keep her from eating dairy and chocolates due to stress. Same doctor also sent us to see an eye doctor to test her vision to see if it was causing the headaches. The ophthalmologist told us there was nothing wrong with her vision so that left us with the dairy abstinence. After that first trip to the doctors we were optimistic that everything was just part of her puberty acting up. The next few days there was no vomiting but she was still in pain. Her headache made her didn't want to get out of bed and it was that time that school was over so she was just lying in her room most of the time. One day she and Che went to her school to pick up her final school cards and then decided to meetup with her classmates at the mall. They went and did what normal kids do at the mall, arcade, frappuccinos, and even "nerf tag". During lunch time after eating a lot of chicken wings, Trinity asked to go to the restroom and then suddenly threw up everything she ate. Che knew then we needed to take her back to the doctor. We decided to consult a new pediatrician recommended by Che's sister. The new doctor noticed she had sinus problems which may contribute to her headache but asked us to do a CT Scan to put our worries to rest. It was after that test it seems, that our worries escalated to pure horror and shock. The scan detected a mass in in her brain and we were told to get an MRI to get a more detailed image of the mass. These terms were very new to my wife and me: MRI, CT Scan, and it was even our first time to ride an ambulance that day as the MRI service was not available in the hospital that we were admitted.
The Diagnosis:
Like I said, everything was very new to us and all these medical stuff were being shoved to our brains very fast. I do not know how MRI scans go but after taking Trinity through a stretcher inside a noisy machine for 1 hour, we got handed the big envelope where the negative prints were and a piece of paper which contains what looks like an initial analysis of the image that was taken of my daughters brain. I saw my wife’s hand weaken as she read the paper, almost dropping it in the process. I took it from her and read it and saw the words tumor and “blastoma” which I would come to know later as synonymous with cancer. After the scan we found out that pediatric neurologists were very few in this country and we would likely see the one who could read the scans to us within the next 48 hours. Our kind doctor recommended that if we wished, we can move her to another hospital if we knew another pedia neurologist who can take our case. Luckily, Che has good friends in the medical field and they have helped us get transferred to a better hospital and coordinated for us to get our diagnosis sooner. Nothing could have prepared us the for the worst news of our lives. We got to be introduced to four dreaded letters:D.I.P.G. It is a rare form of brain tumor that is inoperable and incurable. I can remember holding back my tears as I listened to the doctor explain to us all these medical terms some of which I really did not bother to listen. As soon as the words “9-12 months to live” was mentioned my mind just involuntarily shut itself and dread and shock came over. I remember my wife was blankly staring into the doctors eyes. She was repeating her words and struggling to form new sentences to say.
We were advised that the prescribed treatment is 30 sessions of Radio Therapy which blasts the tumor with concentrated X-rays with the purpose of attempting to shrink the tumor down to size but never actually taking it out. We were told that after the therapy Trinity may experience alleviated symptoms for a couple of months. Che asked what I was thinking: "what happens after that?” to which the Doctor replied "then we may expect her symptoms to gradually worsen afterwards". I can hear my heart broke into thousand pieces.
Our Plan:
It has been almost two months since that fateful day at the hospital and we are already on last week of Trinity's Radio Treatment sessions. I have spent that time researching learning more on this disease and what other options do we have. I have learned that in the US and Australia, children with DIPG have undergone clinical trials which means that while it has no cure yet, kids together with their parents are fighting to find it.A little over a year ago Che and I were working and saving up to migrate to Australia. I qualified for a skilled migration program and all the money we earned the past year up to now has been put into this endeavor of ours. Now that we are days away from getting our visa approved, our plan is to go to Australia and look for more options for Trinity's treatment. We have only saved enough to support us for a few months until we get settled in this new country and with my daughter's condition it is certain that our medical expenses will accumulate really fast. So we want to be prepared. More over, Trinity will begin to have special needs when her symptoms come back and we would like for her to be as comfortable as possible and again come prepared.
How you can help
My wife and I are asking everyone who reads this to help us extend our daughter's life. Help us bring her to Australia to look for more treatment and at the same time make more experiences with her in this new country. She is the only one we have and she has been the motivation for every single thing we have done in our lives. She is so excited to come to Australia and she is even planning everything she is going to do there even how her room is going to look like. She has a heart of gold and a soft spot for all animals which makes her a perfect fit to live there. Help us make her wishes come true. With your donations, our family can hit two birds in one stone:1. Look for clinical trials in Australia which may and can extend her life, and 2. fulfill Trinity’s bucket list and experience more of the country making her life full of memories and moments with us. We hope that this fund raising campaign will be successful so that we can spend more quality time with Trinity without the stress of worrying about the finances.
No amount is too small. Your kindness and generosity will surely get us through this trying time in more ways you can ever imagine.
We thank you for the time you took to read this and we hope that God rewards your kindness.
Please click the share button.
Organizer
Timothy Ongcoy Pelagio
Organizer
Mount Annan NSW
