Daniel Doyle fund for brain cancer
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Daniel and Baby Monkey's Journey
To tell the story, I must start at the beginning. More than anything in life, I wanted a child. After years of trying, I conceived not one baby but was given the news that I was pregnant with triplets. A little overwhelming but I was so excited. The babies were born grossly premature with a lot of health issues resulting in many months of hospitalization after birth. My babies were born just a day after April Fool’s Day….I always say this was a blessing because of the jokes that could later ensue. On Mother’s Day, I was finally able to hold the triplets all together by stretching wires and tubes so that we could take a picture and they could be in my arms.
By June, after going to the hospital every day for months, the triplets were finally home. That is where the real work began. Primarily, my husband, myself, and my parents were the helping hands with these tiny infants. First, came many doctor’s appointments because of their fragile health. One of my sons had a grade III brain bleed {IVH} and my other son came home on oxygen and had an apnea monitor. Next, I noticed some differences compared to other children. We started therapies because the toddlers were so far delayed in their skills. At one point, I think my three toddlers and I, went to 18 therapy sessions a week for speech, feeding, occupational, music, and physical therapy. Finally, we ended up at the Melmed Center where 2 of my sons were diagnosed with Autism.
All my days were spent focused on helping my children both in and out of school from therapy to specialized education once they began their schooling years. Small steps were made…progress can be slow but each milestone was a victory.
Fast forward 7 years and 11 months and I gave birth to another set of multiples. This time I had twin boys, both healthy. I was elated. Daniel was the first born followed one minute later by Michael.
The father of my twin sons, Brendan, was in the process of moving from Ireland and was here when the boys were born. He returned to Ireland one last time to finalize things before the final move. His last journey back to us brought him through England where he slipped on white, wet tiled flooring in the airport bathroom and flew against the wall and was knocked unconscious. He was rushed to the hospital in England. He was released several days later and within weeks his vision deteriorated in both his eyes until his sight was completely gone. He was legally blind and would only see his sons grow through his sense of touch. After one and a half years, Brendan received a new set of eyes in the form of a Guide Dog named Abe.
Things seemed easy raising our twins in comparison to the triplets with all their therapies. I considered myself very fortunate. However, at approximately 3 years of age, Daniel’s speech seemed to deteriorate and it was recommended he be seen by a speech therapist for a consult. This didn’t concern me as my older son had been in speech therapy for years.
Daniel and Michael began preschool at 4 years old with some mild delays, additionally Daniel had speech therapy included. Again, the boys delighted all who met them. Daniel was sweet and loving while his twin was funny and mischievous. The holidays passed and in January 2014 life changed again.
In late January, Daniel began waking up, screaming in the middle of the night with pain in his head. This went on for 2-3 nights and we became extremely concerned. I called the pediatrician and Daniel was immediately seen that day. The PA asked many questions and finally stated she wanted to order an MRI based off our answers and the examination of Daniel with the symptoms he was presenting. She told us to have him take ibuprofen that night to see if it helped the pain in his head but to call if it did not help. We called the following day reporting nothing had changed and she advised us to go straight to the emergency room at Phoenix Children’s Hospital. I felt a bit foolish as I didn’t often visit emergency rooms.
Upon arriving at the emergency room, we were checked in and a CAT scan was ordered for Daniel. After the scan, I expected them to come back in the room and tell us we wasted their time. However, 3 doctors and a nurse came into the room to give us results. The next 24 hours was surreal and this is where Daniel’s journey really began.
Immediately, Daniel was checked into the hospital and an MRI was ordered to look further at the mass that was seen in his head. During this whole time, I kept explaining to Daniel that he couldn’t eat anything because they needed more pictures of his head where his pain was. By early evening Daniel was wheeled off for an MRI. While his MRI was being done his neurosurgeon was following the imaging at home and mapping out a GPS navigation of my son’s head for immediate surgery the next morning. I couldn’t begin to comprehend the news that I was given that day. My four year old son had a brain tumor and it was a sizeable mass. Initially, I was not aware like many that a tumor in a child is always cancerous.
The surgery the following morning took over 3.5 hours. I knew my child was in the best hands but his tumor was by the brain stem. Daniel stayed in intensive care for 3 days followed by 3 more days in the hospital. He never complained and the one thing he really wanted to comfort him was his stuffed monkey that he was given when he was born. “Baby Monkey” became his strength. We were asked many questions about symptomology prior to coming to the emergency room but Daniel never had typical symptoms. The two things he exhibited were speech problems and now looking back, I remembered he always complained that his legs were tired and he wanted to be carried. At the time I thought nothing of it as he was smaller than his brother and more had a more fragile build. As I commented to the neurosurgeons, “If all children showing these symptoms could have a possibility of a brain tumor the hospital would be inundated with frantic parents.” The final word of the neurosurgeon was that he felt very confident that he removed the whole mass from Daniel and an MRI would be scheduled for March for follow-up.
Upon some final instructions, there would be a bond with Daniel’s team of neurologist, oncologists, and radiologists for many years. First there would be MRI’s every 6-8 weeks, then 12 weeks, and moving to 6 months or longer until he reached college age. In March, Daniel had that first follow-up MRI and so did Baby Monkey. The results were that everything was not entirely gone but the confidence of his team was still high and it would be monitored closely. One thing we were told that shocked us was that the initial cancerous brain tumor was 2 by 4 inches in size so big, in fact, that the entire brain on the left side was pushed off midline.
Daniel had also started physical therapy to help improve skills lost because of the resection. He also was restricted from participating at gym or recess at school because of the swelling that would take 6-8 months to heal inside the head. Daniel started getting angry which was another facet of healing from his brain tumor. This was difficult on the whole family especially his siblings because it was hard to explain the change in his behavior.
Somewhere late in the spring, Daniel’s anger continued but also he started speaking of death and becoming an angel with wings. I kept reassuring him that he wouldn’t become an angel until he was a very old grandpa. The severity of this issue became so great that Daniel began seeing a psychiatrist to see if she could help him. My child had turned 5 years old in March and a childhood full of laughter and carelessness became worrisome. Daniel was unable to comprehend his medical issues or understand the implications of everything happening in his life.
Every time something was a bit off, we seemed to be taking Daniel to the emergency room as directed by his team of doctors. This happened so often that the emergency room staff recognized us when we came in.
Our family had been through so much, and anonymous benefactors wanted to bring some joy to Daniel’s life after his recovery from surgery and paid to have our family of 7 go to Disneyland also known as the happiest place on Earth. We went in June 2014 excited as we thought everything was behind us. The trip and even the daily outings were tiring to Daniel. He didn’t seem healed and wanted rest which we figured was normal.
After this holiday another MRI was done and the results were scheduled to be discussed. I felt the team would say, “See you in 6 months and everything looks great”. Daniel’s oncologist did not have the news I was expecting. Instead she felt that another surgery was needed sooner rather than later but left the decision up to us. After his initial surgery, there was a small part of the tumor that remained in the brain stem and had started to grow. The oncologist felt that if we waited too long for the surgery it could affect Daniel’s smile or his facial features along with the worry of it continuing to grow. Unfortunately, as we had been informed by the team, typical radiation and chemotherapy were not effective at eliminating the type of cancer that my son had. Daniel’s cancer was supposed to be slow growing but it was acting atypical. The decision was made quickly and we decided to be proactive rather than reactive to his cancer treatment.
October 2014, Daniel had his second brain surgery. The neurosurgeon felt that everything went very well and once again felt he removed all of the tumor. Another week in the hospital….fall moved on and the holidays were approaching. Prior to Christmas, Daniel’s follow-up MRI was scheduled from his surgery. I scheduled to hear the results just prior to the New Year as I felt a new beginning would be upon us.
Results can often change in life as I am well aware but this time I caught my breath when I was told that the cancer was still present and the growth although much smaller still existed. A concern grew from the team as well because we were told that for whatever reason Daniel’s cancer was not acting typical but was aggressive. With a pilocytic astrocytoma pathology, there is usually one surgery, one resection, and that is it.
We were aware that a specialized pinpointed type of radiation machine was supposed to be brought to Phoenix in 2015. This proton beam blast radiation could be the other viable option for Daniel besides surgery. At that meeting with the team, we were given the news that this technology would now not come to Phoenix until 2016 because of the tremendous expense. In essence, the team felt the best option for Daniel was to try the proton radiation as each additional surgery poses a greater risk because of the cancer being located by the brain stem. It was felt that the only option to help our son to fight his cancer was to seek this specialized radiation treatment elsewhere with the closest facility in San Diego, CA. So the plan to connect with doctors in San Diego was started. We are now in February….and still have not even formalized plans to start Daniel’s treatment because the insurance company has not approved the treatment. The trip to San Diego will consist of 2 parts. First, Daniel needs to be taken for a consult and assimilation. Approximately, 2 weeks later the proton treatment will begin and last 6-8 weeks in duration and the treatments will be done on a daily basis.
Day by day, I watch Daniel have more unexplained outbursts of anger against members of his family. Sometimes he hits me and says that he will not stop until I am in heaven and I know in my heart that my child is very worried psychologically with his own health. At times, his hands shake with tremors due to the tumor. Now his head has started to hurt during the day which did not happen before. On February 6. 2015, Daniel’s head hurt so much he asked if he could not go to school and stay in his room until his siblings were gone. We called the doctor. We were told to bring him for another MRI as the team in Phoenix is concerned with the spread of his cancer. I told Daniel that he and Baby Monkey had to have another MRI for his head pain. When I put him in the car, he started to cry. This was the first time since being diagnosed that I saw this happen. It distressed me to see that small face so upset and hear the quiver in his voice as he rode to the hospital.
Just recently, Daniel and I had a conversation. I recall Daniel saying to me, “Mommy if I need to go to the hospital you will tell me, right?” My reply was doesn’t mommy always tell you the truth. I asked him why he asked the question. Daniel told me it was to make sure Baby Monkey came along with him on his journey.
I have never been one to ask for help. Both of my older sons have 2 diagnosed disabilities, my husband is blind, my 5 year old has cancer located by and in his brain stem. I do what is necessary to take care of my children and family but there comes a time in life where I have been told that it is okay to ask for help. So, I give myself permission to ask. On behalf of my son, I am asking for help….his insurance company has not approved the medical treatment and several months have gone by. Even if the insurance company approves treatment the out-of-pocket medical expenses and the cost of staying out of state is extremely expensive. Please help my little boy become cancer free and let him have his childhood back.
We have been featured on the local news here: http://www.azcentral.com/story/news/12-news/2015/03/22/12-news-local-6-year-old-fighting-brain-cancer/25189565/
To tell the story, I must start at the beginning. More than anything in life, I wanted a child. After years of trying, I conceived not one baby but was given the news that I was pregnant with triplets. A little overwhelming but I was so excited. The babies were born grossly premature with a lot of health issues resulting in many months of hospitalization after birth. My babies were born just a day after April Fool’s Day….I always say this was a blessing because of the jokes that could later ensue. On Mother’s Day, I was finally able to hold the triplets all together by stretching wires and tubes so that we could take a picture and they could be in my arms.
By June, after going to the hospital every day for months, the triplets were finally home. That is where the real work began. Primarily, my husband, myself, and my parents were the helping hands with these tiny infants. First, came many doctor’s appointments because of their fragile health. One of my sons had a grade III brain bleed {IVH} and my other son came home on oxygen and had an apnea monitor. Next, I noticed some differences compared to other children. We started therapies because the toddlers were so far delayed in their skills. At one point, I think my three toddlers and I, went to 18 therapy sessions a week for speech, feeding, occupational, music, and physical therapy. Finally, we ended up at the Melmed Center where 2 of my sons were diagnosed with Autism.
All my days were spent focused on helping my children both in and out of school from therapy to specialized education once they began their schooling years. Small steps were made…progress can be slow but each milestone was a victory.
Fast forward 7 years and 11 months and I gave birth to another set of multiples. This time I had twin boys, both healthy. I was elated. Daniel was the first born followed one minute later by Michael.
The father of my twin sons, Brendan, was in the process of moving from Ireland and was here when the boys were born. He returned to Ireland one last time to finalize things before the final move. His last journey back to us brought him through England where he slipped on white, wet tiled flooring in the airport bathroom and flew against the wall and was knocked unconscious. He was rushed to the hospital in England. He was released several days later and within weeks his vision deteriorated in both his eyes until his sight was completely gone. He was legally blind and would only see his sons grow through his sense of touch. After one and a half years, Brendan received a new set of eyes in the form of a Guide Dog named Abe.
Things seemed easy raising our twins in comparison to the triplets with all their therapies. I considered myself very fortunate. However, at approximately 3 years of age, Daniel’s speech seemed to deteriorate and it was recommended he be seen by a speech therapist for a consult. This didn’t concern me as my older son had been in speech therapy for years.
Daniel and Michael began preschool at 4 years old with some mild delays, additionally Daniel had speech therapy included. Again, the boys delighted all who met them. Daniel was sweet and loving while his twin was funny and mischievous. The holidays passed and in January 2014 life changed again.
In late January, Daniel began waking up, screaming in the middle of the night with pain in his head. This went on for 2-3 nights and we became extremely concerned. I called the pediatrician and Daniel was immediately seen that day. The PA asked many questions and finally stated she wanted to order an MRI based off our answers and the examination of Daniel with the symptoms he was presenting. She told us to have him take ibuprofen that night to see if it helped the pain in his head but to call if it did not help. We called the following day reporting nothing had changed and she advised us to go straight to the emergency room at Phoenix Children’s Hospital. I felt a bit foolish as I didn’t often visit emergency rooms.
Upon arriving at the emergency room, we were checked in and a CAT scan was ordered for Daniel. After the scan, I expected them to come back in the room and tell us we wasted their time. However, 3 doctors and a nurse came into the room to give us results. The next 24 hours was surreal and this is where Daniel’s journey really began.
Immediately, Daniel was checked into the hospital and an MRI was ordered to look further at the mass that was seen in his head. During this whole time, I kept explaining to Daniel that he couldn’t eat anything because they needed more pictures of his head where his pain was. By early evening Daniel was wheeled off for an MRI. While his MRI was being done his neurosurgeon was following the imaging at home and mapping out a GPS navigation of my son’s head for immediate surgery the next morning. I couldn’t begin to comprehend the news that I was given that day. My four year old son had a brain tumor and it was a sizeable mass. Initially, I was not aware like many that a tumor in a child is always cancerous.
The surgery the following morning took over 3.5 hours. I knew my child was in the best hands but his tumor was by the brain stem. Daniel stayed in intensive care for 3 days followed by 3 more days in the hospital. He never complained and the one thing he really wanted to comfort him was his stuffed monkey that he was given when he was born. “Baby Monkey” became his strength. We were asked many questions about symptomology prior to coming to the emergency room but Daniel never had typical symptoms. The two things he exhibited were speech problems and now looking back, I remembered he always complained that his legs were tired and he wanted to be carried. At the time I thought nothing of it as he was smaller than his brother and more had a more fragile build. As I commented to the neurosurgeons, “If all children showing these symptoms could have a possibility of a brain tumor the hospital would be inundated with frantic parents.” The final word of the neurosurgeon was that he felt very confident that he removed the whole mass from Daniel and an MRI would be scheduled for March for follow-up.
Upon some final instructions, there would be a bond with Daniel’s team of neurologist, oncologists, and radiologists for many years. First there would be MRI’s every 6-8 weeks, then 12 weeks, and moving to 6 months or longer until he reached college age. In March, Daniel had that first follow-up MRI and so did Baby Monkey. The results were that everything was not entirely gone but the confidence of his team was still high and it would be monitored closely. One thing we were told that shocked us was that the initial cancerous brain tumor was 2 by 4 inches in size so big, in fact, that the entire brain on the left side was pushed off midline.
Daniel had also started physical therapy to help improve skills lost because of the resection. He also was restricted from participating at gym or recess at school because of the swelling that would take 6-8 months to heal inside the head. Daniel started getting angry which was another facet of healing from his brain tumor. This was difficult on the whole family especially his siblings because it was hard to explain the change in his behavior.
Somewhere late in the spring, Daniel’s anger continued but also he started speaking of death and becoming an angel with wings. I kept reassuring him that he wouldn’t become an angel until he was a very old grandpa. The severity of this issue became so great that Daniel began seeing a psychiatrist to see if she could help him. My child had turned 5 years old in March and a childhood full of laughter and carelessness became worrisome. Daniel was unable to comprehend his medical issues or understand the implications of everything happening in his life.
Every time something was a bit off, we seemed to be taking Daniel to the emergency room as directed by his team of doctors. This happened so often that the emergency room staff recognized us when we came in.
Our family had been through so much, and anonymous benefactors wanted to bring some joy to Daniel’s life after his recovery from surgery and paid to have our family of 7 go to Disneyland also known as the happiest place on Earth. We went in June 2014 excited as we thought everything was behind us. The trip and even the daily outings were tiring to Daniel. He didn’t seem healed and wanted rest which we figured was normal.
After this holiday another MRI was done and the results were scheduled to be discussed. I felt the team would say, “See you in 6 months and everything looks great”. Daniel’s oncologist did not have the news I was expecting. Instead she felt that another surgery was needed sooner rather than later but left the decision up to us. After his initial surgery, there was a small part of the tumor that remained in the brain stem and had started to grow. The oncologist felt that if we waited too long for the surgery it could affect Daniel’s smile or his facial features along with the worry of it continuing to grow. Unfortunately, as we had been informed by the team, typical radiation and chemotherapy were not effective at eliminating the type of cancer that my son had. Daniel’s cancer was supposed to be slow growing but it was acting atypical. The decision was made quickly and we decided to be proactive rather than reactive to his cancer treatment.
October 2014, Daniel had his second brain surgery. The neurosurgeon felt that everything went very well and once again felt he removed all of the tumor. Another week in the hospital….fall moved on and the holidays were approaching. Prior to Christmas, Daniel’s follow-up MRI was scheduled from his surgery. I scheduled to hear the results just prior to the New Year as I felt a new beginning would be upon us.
Results can often change in life as I am well aware but this time I caught my breath when I was told that the cancer was still present and the growth although much smaller still existed. A concern grew from the team as well because we were told that for whatever reason Daniel’s cancer was not acting typical but was aggressive. With a pilocytic astrocytoma pathology, there is usually one surgery, one resection, and that is it.
We were aware that a specialized pinpointed type of radiation machine was supposed to be brought to Phoenix in 2015. This proton beam blast radiation could be the other viable option for Daniel besides surgery. At that meeting with the team, we were given the news that this technology would now not come to Phoenix until 2016 because of the tremendous expense. In essence, the team felt the best option for Daniel was to try the proton radiation as each additional surgery poses a greater risk because of the cancer being located by the brain stem. It was felt that the only option to help our son to fight his cancer was to seek this specialized radiation treatment elsewhere with the closest facility in San Diego, CA. So the plan to connect with doctors in San Diego was started. We are now in February….and still have not even formalized plans to start Daniel’s treatment because the insurance company has not approved the treatment. The trip to San Diego will consist of 2 parts. First, Daniel needs to be taken for a consult and assimilation. Approximately, 2 weeks later the proton treatment will begin and last 6-8 weeks in duration and the treatments will be done on a daily basis.
Day by day, I watch Daniel have more unexplained outbursts of anger against members of his family. Sometimes he hits me and says that he will not stop until I am in heaven and I know in my heart that my child is very worried psychologically with his own health. At times, his hands shake with tremors due to the tumor. Now his head has started to hurt during the day which did not happen before. On February 6. 2015, Daniel’s head hurt so much he asked if he could not go to school and stay in his room until his siblings were gone. We called the doctor. We were told to bring him for another MRI as the team in Phoenix is concerned with the spread of his cancer. I told Daniel that he and Baby Monkey had to have another MRI for his head pain. When I put him in the car, he started to cry. This was the first time since being diagnosed that I saw this happen. It distressed me to see that small face so upset and hear the quiver in his voice as he rode to the hospital.
Just recently, Daniel and I had a conversation. I recall Daniel saying to me, “Mommy if I need to go to the hospital you will tell me, right?” My reply was doesn’t mommy always tell you the truth. I asked him why he asked the question. Daniel told me it was to make sure Baby Monkey came along with him on his journey.
I have never been one to ask for help. Both of my older sons have 2 diagnosed disabilities, my husband is blind, my 5 year old has cancer located by and in his brain stem. I do what is necessary to take care of my children and family but there comes a time in life where I have been told that it is okay to ask for help. So, I give myself permission to ask. On behalf of my son, I am asking for help….his insurance company has not approved the medical treatment and several months have gone by. Even if the insurance company approves treatment the out-of-pocket medical expenses and the cost of staying out of state is extremely expensive. Please help my little boy become cancer free and let him have his childhood back.
We have been featured on the local news here: http://www.azcentral.com/story/news/12-news/2015/03/22/12-news-local-6-year-old-fighting-brain-cancer/25189565/
Organizer
Daniel Doyle
Organizer
Litchfield Park, AZ
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