Episode 113 | Amy’s Story: A Son with Craniopharyngioma

Podcast Show Notes

Today I’m talking with Amy, who discovered her son had a brain tumor after noticing something different about his eye one morning. The brain has a lot of jobs, and it has affected his everyday life in many ways. Amy is an incredible mom, and she shares their story so beautifully. Her ultimate goal is to support other parents going through similar things.

In this episode, we talk about…

[2:19] Amy’s family

Amy’s family is from Ocean City, Maryland, a coastal resort town in the middle of Baltimore, Washington DC, and Philadelphia. It’s a pretty busy area in the summer and a little quieter in the winter. She lives with her husband, Shawn, and their son Alex, who is 11 years old. Alex is a 6.5-year brain tumor survivor. 

[3:59] Finding out about her son’s brain tumor

Amy’s son was neurotypical and there were no real indications that anything was wrong leading up to the event that prompted his brain tumor diagnosis. It was a Thursday in May 2015, right before Memorial Day weekend. The family had a tough week, as Amy’s grandmother had recently been put into hospice care. They were in Baltimore the day before to say their goodbyes, and they had returned home that night.

Her son was four years old, and he woke up excited about library day at pre-k. Amy looked at him, and she noticed that his left eye was crossing a bit inward. She thought it was a bit strange, but there is a family history of a lazy eye. She thought she may not have noticed that developing in the midst of the family health issues they had been experiencing. Nothing else seemed out of the ordinary, so she sent her son to school. She made an eye doctor appointment, and later that day his teacher emailed her to ask if she had noticed her son’s eye. She also mentioned that her son seemed to be walking unsteadily. Amy called the pediatrician, and they told her to bring her son into the office.

When they arrived at the pediatrician’s office, he took one look at her son and told Amy to bring him to either Johns Hopkins (in Baltimore) or Children’s National (in Washington DC). He thought it was a brain tumor or brain cancer. It was an out of body experience for Amy, and they got in the car and drove to Johns Hopkins. Amy’s family is from Baltimore, so it seemed like the natural pick. 

When they arrived at the ER, they put her son in an ultra-fast MRI. Amy was terrified, and she was trying to keep him still for the MRI. Her husband met them there, and they waited for an answer. The doctor explained that they saw a mass in the middle of his brain, and the neurosurgeon would be in to talk about the next steps.

[8:55] Emergency brain surgery 

Amy’s son was sent to the PICU overnight, and they did a long MRI the next morning. After that, they explained to Amy and her husband that their son would have to go into surgery right away because he was experiencing extreme hydrocephalus. The excess fluid was pushing on the optic nerve, causing the eye to turn inward and pressing on other fragile systems in the brain. 

Alex went into emergency brain surgery that morning, and their lives had completely changed overnight. Waiting for him to get through surgery was the scariest time in their lives.

Before the surgery, Amy’s son asked her if he was sick. She didn’t know what to tell him, and he was most upset because he was missing a field trip at school. As a parent, it was hard for Amy to digest what was going on herself. She didn’t know how to keep him from feeling scared.

Amy shared that, even in the worst moments, there is always something that can bring light. The day before, while they were waiting to go to the pediatrician, Amy and Alex had done an art project. He had glitter in his hair, and the nurses had to get the glitter out of his hair the next day so he could go into emergency brain surgery. It was surreal to see him go from a child doing a craft to going into surgery so quickly.

[14:32] Complications after brain surgery

Everything happened so quickly, Amy didn’t feel the surgery was thoroughly explained to them. It was an emergency, so they didn’t have time to really process what the tumor was and what the long-term consequences could be. There was no time to seek second opinions or to ask a lot of questions. 

After Alex’s surgery, the surgeon came out and told Amy and her husband that the tumor was benign and it was easily removed. Apparently this tumor can be very “sticky” and it can stick to different structures in the brain, but Alex’s tumor had not done that. The surgeon seemed confident, and Amy and her husband felt good. A nurse told them he would probably be out of the hospital in a few days to a week. 

The night after the surgery, however, things started to unfold that indicated that may not be the case. Alex started losing all his body fluids. He was continuously urinating, and the doctors discovered he had a condition called diabetes insipidus. The surgery had impacted the pituitary gland and the hypothalamus, as the tumor had been sitting right between those two vital parts of the brain. The tumor removal had damaged the hypothalamus and the pituitary stalk, so Alex was no longer producing the antidiuretic hormone to tell the kidneys to release or hold water. 

Related to this issue, Alex also developed what is known as adipsia. He has no sense of thirst because of the injury to his hypothalamus, so they are constantly troubleshooting his blood sodium level. High sodium or low sodium can both result in seizures, can lead to coma, and can be fatal. Management, therefore, was crucial. There was no way to actually test sodium at home like you can with blood sugar, which made this very challenging.

In addition, Alex had complete loss of his endocrine system. He would not be making any hormones on his own, so they would have to replace his human growth hormone so that he could grow. They would have to replace his thyroid hormone and give him hydrocodone because he no longer made cortisol. He has adrenal insufficiency, as he is unable to produce cortisol in response to any stress to the body. If he is sick or has an injury, they have to administer a dose of steroids.

Alex also has a condition called hypothalamic obesity. They have to monitor his fluid intake because of the diabetes insipidus, but they also have to be careful about his diet because he can easily gain weight which can lead to multiple other conditions. 

The brain surgery occurred in May, and as they got into the winter months he would have seizures and have to be hospitalized. They discovered he has temperature dysregulation that is more troublesome in the winter. His body temperature can easily drop into hypothermia, resulting in hypothermic seizures. Alex does not bounce back easily from these seizures, making them very challenging.

The first year after diagnosis was really difficult, because they were trying to figure so much out. Things would just start to emerge, and that is the nature of the physical impact to the brain. He also began to exhibit cognitive issues such as memory issues and slower processing speed. Six-and-a-half years later, it can still feel like a lot. It has been quite a journey.

[18:34] Researching, asking questions, and advocating while caring for a sick child

Amy shares that they tried to get a sense of control in the chaos by learning as much as they could. She was a web designer at the time, so she always had a computer with her. As soon as she learned how to spell craniopharyngioma, she Googled it. Amy cautions people about this, because when you Google it you are presented with all of the possibilities and the worst-case scenarios. She and her husband wanted to become as educated as they could about the condition.

They try to be very collaborative in spirit with the medical team. Everyone wants to work toward what is best for Alex, and that has really gotten them through. Amy shares that her son is a completely different person after the surgery than he was before, so they were grieving the loss of the person that they knew while getting to know the new person. Educating themselves gave them some sense of control, even if it was an illusion.

For example, they originally thought they would be able to track his sodium at home. The nurse explained that their son had a really rare condition, and that was not possible. The best they could do was watch what goes in and what comes out, and try to make sense of that. So they began to track it, and Amy worked with a web development team to develop a really basic app. It allowed them to track his ins and outs, and the doctors could look at it as well. In the first couple of months after surgery, Alex was not awake very much. It was just a lot of watching and worrying, so this gave them something to focus on.

[22:08] Starting a foundation

They started the Raymond A. Wood Foundation in 2017. Building out that app in conjunction with a medical device supplied to families to test blood sodium is one of the things on their project list. The app is really basic and kind of ugly right now, but the hope is to eventually offer it for other families to use as well.

Amy notes that she has always been someone who is solutions-oriented. This is a big challenge, but they try to solve the problem because they know others share it as well. If they can find a way to fix something, they definitely want to make sure that is for the greater good.

[25:05] Coping with the emotional toll of caring for a child with a brain tumor

The first couple of months were so painful. Amy remembers coming home from the hospital to get her clothes, and seeing everything still sitting out from the craft they had done before going to the pediatrician. She hadn’t really ever lost anyone in her life other than grandparents who had lived long lives, and she felt in some ways like she was grieving a death. They had started to see that Alex wasn’t going to be the same, and she still feels that grief to this day. They feel so blessed to have their son, and he is a wonderful person. This was their path and his path, and Amy has accepted that to some degree – but she still feels that grief.

In the first couple months, Amy was worried about herself as well. They didn’t sleep, and she tried to hold it all together. One day they were in the rehab hospital, and Amy was talking to the person who managed the education. She started using words like “IEP” and “accommodations”, and that is when it hit Amy that this was not going away. She had a breakdown.

Since then, Amy has been on a journey of finding peace. She makes sure to take time for herself, balancing her role as a caregiver and a parent as well. Amy builds in time to exercise, as that is one of the biggest tools she uses to cope with heavy feelings. 

Being able to create the foundation was helpful as well. In adversity, Amy and her family have been able to throw lifelines to others. While Amy still grieves, she is working toward acceptance.

[36:00] Intentionally looking for blessings

Looking for blessings has also been helpful for Amy and her family. It’s a toolkit that you develop to be able to recognize blessings even in the darkest of moments.

[37:32] The Raymond A. Wood Foundation

Because of Alex’s issues with sodium, it was super challenging to get the lab work done to make sure his levels were all right. They were having to go to the lab four times a week, and they would have to go to the ED on the weekend if the lab wasn’t open and something seemed off. 

In Amy’s research, she identified a device that is used in hospitals as a handheld blood analyzer. It does a basic metabolic panel based on a finger stick, but it was not approved for home use. It was very expensive because it was not covered by insurance, and so they set out to find a way to get it. With the help of Alex’s pediatrician, they raised the money to purchase the device. Once they got it home and started using it, it was so life-changing that they knew they had to get it for other families. That is where the Raymond A. Wood Foundation started.

They have been able to get devices into the hands of around 25 other families. While it is great that these tumors are survivable, the survival cost is really high. The impact is lifelong, and it could really impact quality of life. Amy felt like there was no voice for people suffering this way, and they needed more help and support.

In 2020, they really refocused their mission to center around seeking quality of life solutions for hypothalamic, pituitary brain tumor survivors. They still continue to provide the handheld blood analyzers, but they are also now working to develop an at-home sodium meter. Their partner who is working on the research and development of that device just received a grant, so they are really excited about that because it could ultimately be FDA-approved for home use and covered by insurance. They would develop the app in tandem, so families could then log the information as they get it. It could interface with other systems so endocrinologists can log in, see the results, and make adjustments.

They are also working on research, and they are grant-funded for the next three years to build a patient-led collaborative research network. The focus is to get patients and specialists together and talk about standards of care in ongoing care as well as initial treatment. 

In addition, there are critical unmet needs in underserved populations. Their main channel of communication is social media, but not everyone is on social media. Amy has a lot of resources, but there are times when she doesn’t know what to do or who to call. They need to be able to provide research and support to families. 

The foundation has evolved quickly over the last couple years. It gives Amy a lot of hope for her son, because they are making some good progress. 

[44:48] An update on Amy’s son and what he has taught her

Amy says that she doesn’t know another kid like her son. He is such an empathetic person, and he loves people. He loves his family fiercely, and he calls both of his grandmothers almost every day. Alex could be the “poster child of gratitude”, as he is always thankful for the kind things others do for him.

Amy worries about him because he was diagnosed so young, but the one blessing there is that he was too young to remember life before brain surgery. Alex loves arts and crafts, and he loves hunting for seashells. He loves talking about sea animals, and dolphins are his favorite. He has a magnetism, and people really gravitate toward him. He is so optimistic, and he doesn’t complain about the things he has to put up with. He manages to find the good in things, which is really inspiring. 

CONNECT WITH AMY

Website

Facebook

Instagram (Foundation)

Instagram (Personal)

LinkedIn

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

 



Today I’m talking with Amy, who discovered her son had a brain tumor after noticing something different about his eye one morning. The brain has a lot of jobs, and it has affected his everyday life in many ways. Amy is an incredible mom, and she shares their story so beautifully. Her ultimate goal is to support other parents going through similar things.

In this episode, we talk about…

[2:19] Amy’s family

Amy’s family is from Ocean City, Maryland, a coastal resort town in the middle of Baltimore, Washington DC, and Philadelphia. It’s a pretty busy area in the summer and a little quieter in the winter. She lives with her husband, Shawn, and their son Alex, who is 11 years old. Alex is a 6.5-year brain tumor survivor. 

[3:59] Finding out about her son’s brain tumor

Amy’s son was neurotypical and there were no real indications that anything was wrong leading up to the event that prompted his brain tumor diagnosis. It was a Thursday in May 2015, right before Memorial Day weekend. The family had a tough week, as Amy’s grandmother had recently been put into hospice care. They were in Baltimore the day before to say their goodbyes, and they had returned home that night.

Her son was four years old, and he woke up excited about library day at pre-k. Amy looked at him, and she noticed that his left eye was crossing a bit inward. She thought it was a bit strange, but there is a family history of a lazy eye. She thought she may not have noticed that developing in the midst of the family health issues they had been experiencing. Nothing else seemed out of the ordinary, so she sent her son to school. She made an eye doctor appointment, and later that day his teacher emailed her to ask if she had noticed her son’s eye. She also mentioned that her son seemed to be walking unsteadily. Amy called the pediatrician, and they told her to bring her son into the office.

When they arrived at the pediatrician’s office, he took one look at her son and told Amy to bring him to either Johns Hopkins (in Baltimore) or Children’s National (in Washington DC). He thought it was a brain tumor or brain cancer. It was an out of body experience for Amy, and they got in the car and drove to Johns Hopkins. Amy’s family is from Baltimore, so it seemed like the natural pick. 

When they arrived at the ER, they put her son in an ultra-fast MRI. Amy was terrified, and she was trying to keep him still for the MRI. Her husband met them there, and they waited for an answer. The doctor explained that they saw a mass in the middle of his brain, and the neurosurgeon would be in to talk about the next steps.

[8:55] Emergency brain surgery 

Amy’s son was sent to the PICU overnight, and they did a long MRI the next morning. After that, they explained to Amy and her husband that their son would have to go into surgery right away because he was experiencing extreme hydrocephalus. The excess fluid was pushing on the optic nerve, causing the eye to turn inward and pressing on other fragile systems in the brain. 

Alex went into emergency brain surgery that morning, and their lives had completely changed overnight. Waiting for him to get through surgery was the scariest time in their lives.

Before the surgery, Amy’s son asked her if he was sick. She didn’t know what to tell him, and he was most upset because he was missing a field trip at school. As a parent, it was hard for Amy to digest what was going on herself. She didn’t know how to keep him from feeling scared.

Amy shared that, even in the worst moments, there is always something that can bring light. The day before, while they were waiting to go to the pediatrician, Amy and Alex had done an art project. He had glitter in his hair, and the nurses had to get the glitter out of his hair the next day so he could go into emergency brain surgery. It was surreal to see him go from a child doing a craft to going into surgery so quickly.

[14:32] Complications after brain surgery

Everything happened so quickly, Amy didn’t feel the surgery was thoroughly explained to them. It was an emergency, so they didn’t have time to really process what the tumor was and what the long-term consequences could be. There was no time to seek second opinions or to ask a lot of questions. 

After Alex’s surgery, the surgeon came out and told Amy and her husband that the tumor was benign and it was easily removed. Apparently this tumor can be very “sticky” and it can stick to different structures in the brain, but Alex’s tumor had not done that. The surgeon seemed confident, and Amy and her husband felt good. A nurse told them he would probably be out of the hospital in a few days to a week. 

The night after the surgery, however, things started to unfold that indicated that may not be the case. Alex started losing all his body fluids. He was continuously urinating, and the doctors discovered he had a condition called diabetes insipidus. The surgery had impacted the pituitary gland and the hypothalamus, as the tumor had been sitting right between those two vital parts of the brain. The tumor removal had damaged the hypothalamus and the pituitary stalk, so Alex was no longer producing the antidiuretic hormone to tell the kidneys to release or hold water. 

Related to this issue, Alex also developed what is known as adipsia. He has no sense of thirst because of the injury to his hypothalamus, so they are constantly troubleshooting his blood sodium level. High sodium or low sodium can both result in seizures, can lead to coma, and can be fatal. Management, therefore, was crucial. There was no way to actually test sodium at home like you can with blood sugar, which made this very challenging.

In addition, Alex had complete loss of his endocrine system. He would not be making any hormones on his own, so they would have to replace his human growth hormone so that he could grow. They would have to replace his thyroid hormone and give him hydrocodone because he no longer made cortisol. He has adrenal insufficiency, as he is unable to produce cortisol in response to any stress to the body. If he is sick or has an injury, they have to administer a dose of steroids.

Alex also has a condition called hypothalamic obesity. They have to monitor his fluid intake because of the diabetes insipidus, but they also have to be careful about his diet because he can easily gain weight which can lead to multiple other conditions. 

The brain surgery occurred in May, and as they got into the winter months he would have seizures and have to be hospitalized. They discovered he has temperature dysregulation that is more troublesome in the winter. His body temperature can easily drop into hypothermia, resulting in hypothermic seizures. Alex does not bounce back easily from these seizures, making them very challenging.

The first year after diagnosis was really difficult, because they were trying to figure so much out. Things would just start to emerge, and that is the nature of the physical impact to the brain. He also began to exhibit cognitive issues such as memory issues and slower processing speed. Six-and-a-half years later, it can still feel like a lot. It has been quite a journey.

[18:34] Researching, asking questions, and advocating while caring for a sick child

Amy shares that they tried to get a sense of control in the chaos by learning as much as they could. She was a web designer at the time, so she always had a computer with her. As soon as she learned how to spell craniopharyngioma, she Googled it. Amy cautions people about this, because when you Google it you are presented with all of the possibilities and the worst-case scenarios. She and her husband wanted to become as educated as they could about the condition.

They try to be very collaborative in spirit with the medical team. Everyone wants to work toward what is best for Alex, and that has really gotten them through. Amy shares that her son is a completely different person after the surgery than he was before, so they were grieving the loss of the person that they knew while getting to know the new person. Educating themselves gave them some sense of control, even if it was an illusion.

For example, they originally thought they would be able to track his sodium at home. The nurse explained that their son had a really rare condition, and that was not possible. The best they could do was watch what goes in and what comes out, and try to make sense of that. So they began to track it, and Amy worked with a web development team to develop a really basic app. It allowed them to track his ins and outs, and the doctors could look at it as well. In the first couple of months after surgery, Alex was not awake very much. It was just a lot of watching and worrying, so this gave them something to focus on.

[22:08] Starting a foundation

They started the Raymond A. Wood Foundation in 2017. Building out that app in conjunction with a medical device supplied to families to test blood sodium is one of the things on their project list. The app is really basic and kind of ugly right now, but the hope is to eventually offer it for other families to use as well.

Amy notes that she has always been someone who is solutions-oriented. This is a big challenge, but they try to solve the problem because they know others share it as well. If they can find a way to fix something, they definitely want to make sure that is for the greater good.

[25:05] Coping with the emotional toll of caring for a child with a brain tumor

The first couple of months were so painful. Amy remembers coming home from the hospital to get her clothes, and seeing everything still sitting out from the craft they had done before going to the pediatrician. She hadn’t really ever lost anyone in her life other than grandparents who had lived long lives, and she felt in some ways like she was grieving a death. They had started to see that Alex wasn’t going to be the same, and she still feels that grief to this day. They feel so blessed to have their son, and he is a wonderful person. This was their path and his path, and Amy has accepted that to some degree – but she still feels that grief.

In the first couple months, Amy was worried about herself as well. They didn’t sleep, and she tried to hold it all together. One day they were in the rehab hospital, and Amy was talking to the person who managed the education. She started using words like “IEP” and “accommodations”, and that is when it hit Amy that this was not going away. She had a breakdown.

Since then, Amy has been on a journey of finding peace. She makes sure to take time for herself, balancing her role as a caregiver and a parent as well. Amy builds in time to exercise, as that is one of the biggest tools she uses to cope with heavy feelings. 

Being able to create the foundation was helpful as well. In adversity, Amy and her family have been able to throw lifelines to others. While Amy still grieves, she is working toward acceptance.

[36:00] Intentionally looking for blessings

Looking for blessings has also been helpful for Amy and her family. It’s a toolkit that you develop to be able to recognize blessings even in the darkest of moments.

[37:32] The Raymond A. Wood Foundation

Because of Alex’s issues with sodium, it was super challenging to get the lab work done to make sure his levels were all right. They were having to go to the lab four times a week, and they would have to go to the ED on the weekend if the lab wasn’t open and something seemed off. 

In Amy’s research, she identified a device that is used in hospitals as a handheld blood analyzer. It does a basic metabolic panel based on a finger stick, but it was not approved for home use. It was very expensive because it was not covered by insurance, and so they set out to find a way to get it. With the help of Alex’s pediatrician, they raised the money to purchase the device. Once they got it home and started using it, it was so life-changing that they knew they had to get it for other families. That is where the Raymond A. Wood Foundation started.

They have been able to get devices into the hands of around 25 other families. While it is great that these tumors are survivable, the survival cost is really high. The impact is lifelong, and it could really impact quality of life. Amy felt like there was no voice for people suffering this way, and they needed more help and support.

In 2020, they really refocused their mission to center around seeking quality of life solutions for hypothalamic, pituitary brain tumor survivors. They still continue to provide the handheld blood analyzers, but they are also now working to develop an at-home sodium meter. Their partner who is working on the research and development of that device just received a grant, so they are really excited about that because it could ultimately be FDA-approved for home use and covered by insurance. They would develop the app in tandem, so families could then log the information as they get it. It could interface with other systems so endocrinologists can log in, see the results, and make adjustments.

They are also working on research, and they are grant-funded for the next three years to build a patient-led collaborative research network. The focus is to get patients and specialists together and talk about standards of care in ongoing care as well as initial treatment. 

In addition, there are critical unmet needs in underserved populations. Their main channel of communication is social media, but not everyone is on social media. Amy has a lot of resources, but there are times when she doesn’t know what to do or who to call. They need to be able to provide research and support to families. 

The foundation has evolved quickly over the last couple years. It gives Amy a lot of hope for her son, because they are making some good progress. 

[44:48] An update on Amy’s son and what he has taught her

Amy says that she doesn’t know another kid like her son. He is such an empathetic person, and he loves people. He loves his family fiercely, and he calls both of his grandmothers almost every day. Alex could be the “poster child of gratitude”, as he is always thankful for the kind things others do for him.

Amy worries about him because he was diagnosed so young, but the one blessing there is that he was too young to remember life before brain surgery. Alex loves arts and crafts, and he loves hunting for seashells. He loves talking about sea animals, and dolphins are his favorite. He has a magnetism, and people really gravitate toward him. He is so optimistic, and he doesn’t complain about the things he has to put up with. He manages to find the good in things, which is really inspiring. 

CONNECT WITH AMY

Website

Facebook

Instagram (Foundation)

Instagram (Personal)

LinkedIn

Have you heard?  The Child Life On Call mobile app for parents, kids and their care team will be available in 2022.  Sign up to stay informed here.

Child Life On Call is a community of parents and professionals that share ideas, stories and resources to help YOU navigate your child’s unique experiences. We give you strategies to support yourself and your family through life’s challenges.  We are so glad you are here.

Child Life On Call | Instagram | Facebook | Twitter

 



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