Prayers for Baby Joe
About a month after his first birthday, a little Lincolnite boy by the name of Joseph Michael Surdyka was diagnosed with brain cancer. Braincancer. As if the word "cancer" isn't devastating enough for a parent to hear, little baby Joe needed a life saving operation to remove a tumor from his brain immediately. The then 13 month old toddler underwent surgery 3 days after his diagnosis while his parents were still digesting the news. After reviewing the pathology results from the tumor removed from Joseph's brain, it was determined that the cancer was anaplastic ependymoma grade 3, a very aggressive brain cancer. Damn. The removal of the tumor wasn't the end of the treatment process for this happy-go-lucky little toddler, it was just the beginning. This little boy's fight would take him and his family across the country while bringing the people of his hometown together in support of this young family, as adversity does when another Lincoln family needs community support.
The next few months would turn into a long journey for baby Joe and his family. Born April 6, 2013, this gorgeous little boy had already been through being sick every day, a diagnosis of brain cancer, and brain surgery by the time he was 13 months old. What's more -- his family would be given the devastating news that he needed 30 proton treatments to ensure the cancer would not return, and that they could not be administered at a local hospital. Instead, the family would need to travel to Boston, Massachusetts and would need to remain there by Joseph's side until August 5 of this year. His mother, Jamie Lynn wrote on Instagram, "Life is a book. Each page is written as you live it. Everyone's story is different and there is always a chapter that will break your heart." Even as I write this, my heart breaks for this family and what they've already endured. They are strong, beautiful, and blessed with a little fighter who hasn't given up. Backed by a community of supportive, caring people who seem to always dig deep for those in need, this family will continue to heal and overcome this horrid sickness. The family has already raised $14,900, only $10,100 from their goal of $25,000. They plan to donate anything left over after covering baby Joe's treatments as well as the debt they've incurred to other families going through the same. These are remarkable people who've gone through every parent's worst nightmare and have shone through the darkest night.
Who better to tell this story than Joseph's mother, Jamie Lynn? In her own words, "Joseph Michael Surdyka was born on April 6th 2013, he was only 2 days late.. mind you, we were in labor and delivery for 30 hours.. So really, in my eyes our first and only baby was right on time... Joseph's time. The most perfect time. He was 9 pounds 3 ounces.. Much bigger than mommy and daddy thought! He held his head up high hours after he was born while laying on daddy. Joseph hit all his mile stones on time and some further ahead than others born the same time as him. He was so strong early on....All up until early March of this year 2014. He had started taking steps two weeks before his first birthday, which was very exciting for mommy, daddy and everyone close to baby Joseph. All of the sudden, he regressed and stopped trying to walk. At the same time he started puking in the mornings. Once every other morning he puked when he woke up.. And when I say puke I mean.. Joseph was projectile puking, everything that went into his body until everything was out!! The puking increased to every single day, once in the morning. Then he would go to the baby sitter and everything was fine. He would play and act normal. The puking became consistent and his fussiness increase. Everyone who is close to us suggested Joseph was teething. He was getting four teeth at one time. Mommy got a lot of teeth at one time and daddy had a pretty hard time teething too. Everyone who saw him- including his Nanna who is a Registered nurse for over 30 years had deemed it as teething. We had decided to take Joseph to his pediatrician for her opinion of the vomiting because it didn't seem normal to us as new parents. Mommy wasn't able to make it to that appointment but daddy told the doctor that Joseph had been vomiting every other morning for over a week and a half straight and now it's become every day, in the morning. Doctor said his ear looked looked a little red and prescribed antibiotics for possible ear infection. She expressed the importance of getting Joseph off the bottle due to tooth decay and sent us home. The vomiting continued for the next week and progressively got worse each day. Mommy called the on call nurse and told the nurse that he was still throwing up and he recommended we remove all dairy from his diet, so we started feeding almond milk. Mommy and daddy took Joseph back to the doctors that following week and the doctor said to stop the antibiotics cause his ears looked good..but prescribed another drug called Zantac for acid reflux. Mommy asked he doctor about regression on walking and the doctor stated it was normal. The doctor again, expressed how important it was to get Joseph off the bottle. Joseph was given three days of Zantac and feeding him upright, as recommended by his pediatrician. None of this seemed to help the vomiting. Mommy then contacting the on call nurse again who recommended us to go to another location within the practice that was available on weekends, so we went. The doctor we saw wrote a prescription that increased the dose of Zantac, then recommended we take Joseph to get some blood work done at the local Quest diagnostics ...she added that in order to get all the testing to find out what was really going on and to rule out all possibilities was to go to the emergency room. We left the clinic and took him home. Joseph vomited two more times after we got home..so we took him to the emergency room... We spent approximately 10 hours in the emergency room. Joseph had blood drawn, urine samples taken, X-ray and ultra sound with nothing telling us what was wrong and why he was puking so much. The emergency room doctor prescribed a drug called Zophran for nausea, which is usually prescribed to cancer patients going thru chemotherapy. It was very frustrating to be told that babies get sick like this and that it might just pass and we may not ever know what caused it. We took Joseph home and spent the next two days continuing to care for Joseph closely. Joseph refused to drink pedialyte for an entire day, which made him very dehydrated. Two days passed, but on the third morning Joseph threw up dark brown, which looked like blood. Mommy took him back to the emergency room. They hooked Joseph up to IV after taking blood that confirmed he was dehydrated. Joseph was admitted to the hospital where they put him on a clear liquids diet. We spent two days there until we were transferred to another hospital to see a pediatric gastro interologist. They inserted a NG tube down his nose into his stomach to clean Joseph's intestines out from what appeared to be constipation. At the same time, Joseph became lethargic and almost unresponsive. He cried at everything we would try to give him to make him feel better, but nothing worked. Finally, the GI doctors came in scratching their heads as to what was going on. Joseph's grandmother had expressed her feelings of the lethargy and mentioned doing a CT scan of his brain. The doctors agreed to preformed the CT scan. After about 20 mins of taking the scan and getting the images back, the doctors walked in and called mommy and daddy out of the room. We were taken to a computer screen showing images of our baby Joseph's brain. The doctor began to explain what we were looking at. A huge mass that wasn't supposed to be there. We couldn't believe what we were looking at. Our lives changed forever. Joseph had to be rushed up to the pediatric intensive care unit to have a drain place into his tiny skull. The tumor had grown so big that it was blocking his spinal fluid from draining. The spinal fluid had backed up into his brain, causing hydrocephalus. Joseph was experiencing extremely painful headaches, dizziness and puking from the hydrocephalus. Once the drain was place in his skull they needed to performed an MRI to get detailed pictures of the tumor causing all the problems. This all happened on a Friday and they scheduled Joseph for surgery on Monday. Three nights and four days had to pass until they could remove the tumor. Surgery day came and they had Joseph scheduled for the first surgery in the day because this was going to take at least six to eight hours to complete. After a long morning of waiting, the neuro surgeon came out of the operating room and explained tat Joseph was doing well and she believed she was able to get all of the tumor out. Another MRI needed to be completed directly after surgery to confirm all of the tumor had been removed. The doctor told us she believed the type of tumor was called ependymoma based on the location of the tumor and Joseph's age. MRI confirmed the tumor was completely removed and after another week of patiently awaiting pathology results confirmed the tumor was a malignant type. Our perfect baby boy has cancer. That horrible, terrifying word cancer and our baby has it. Now, I did skip over details following Joseph's awakening from surgery. The six days and seven nights following surgery were nothing we could have ever been prepped for. They call it posteria fossa syndrome and Joseph has it. I mean, he did have to undergo brain surgery. Everything we do is ran by the brain. Joseph awoke and his eyes were crossed and it didn't seem like he had control over where they went. He was very upset by this. He couldn't see for about a week. He cried for days and night straight. Eventually, Joseph stopped crying as much and tried to use his arms and we noticed he couldn't control where they went. He couldn't move his head either. During the surgery, they had to cut open the back of his head and neck, separating his neck muscles in the process. It was about a week after surgery when we realized Joseph couldn't do anything and would have to relearn everything all over again. Moving forward to pathology results and the plan of treatment meeting with the oncology team. They gave us a name to this monstrous tumor called anaplastic ependymoma grade III. There are grade I, grade II, grade II, and grade III. There are two types of grade II. Our baby Joseph seriously has a grade III??!! You have got to be kidding me!! My baby had been so healthy. Not a single problem. Deep down my heart knew it was a grade III because of how fast everything happened. Joseph went from being the most perfect baby ever to horribly fussy and upset baby that mommy couldn't even make happy. We all had a meeting with the oncology team of doctors. Mommy, daddy, nana, grandpa, a family friend, the neuro surgeon and our nurse was all in the room. The oncology doctor began to explain the grade of the tumor. He explained there was no chemotherapy treatment that has been proven effective to treat this type of tumor and that Joseph was too young to have photon radiation. My babies future was portrayed to be very grim. We, as a family, asked a lot of questions and expressed how important the quality of life was to us. The team of doctors recommended we could put Joseph in a clinical trial at Stanford where he would receive a couple years of chemotherapy treatments and traditional photon radiation later on at the earliest age of three years old. As a family, we declined further treatments. During the month long stay in the hospital, mommy was able to find a group of parents who have babies and young children who have experienced ependymoma. Even though this story is very sad and unfortunate. There are things to be thankful for. Social media is one of them. I cannot begin to express how thankful and grateful I am to have such an amazing support system. Family and friends and friends of families have been praying for baby Joseph since the days we were looking for answers to the puking. A group of parents online shared stories of the outcomes after something called proton radiation therapy. Who better to get advice from than the parents raising the children who have overcome this thing! I am writing this story now sitting in Boston Massachusetts, where we traveled to from California to receive proton radiation therapy. In four days, Joseph will receive his first treatment. Joseph has to have a port access installed in his chest tomorrow because he is going to have to be put under anesthesia every day he has a treatment. Proton radiation side effects include a lot. The most common are hearing loss, hormone deficiency, thyroid problems, and motor skill challenges. There are many many more side effects that may happen but most of them may not show up until two to ten years after treatment. Even after proton radiation, there is still an 20% chance the tumor will return within five years. Everyday is counted as a blessing. 
This family has already overcome so much, and needs continued prayers and support from all of us. Please click on the following links to show your support and provide any kind of monetary donation that you can afford. I've seen so much community support myself, initially learning of this family and their fight while driving down East Avenue in Lincoln and seeing a little boy named Cashie set up one Saturday at his lemonade stand to raise money for the Surdyka family. With his dad supervising, 4 year old Cashie sat out in the heat serving lemonade to collect money for Baby Joe who's family is very close to Cashie's. This touched my heart; Cashie could have been raising money for a video game he wanted or a new bike or whatever. Instead, he wanted to show his support and love for his little friend. There was a car wash on Baby Joe's behalf on June 28th, and other fundraising measures such as t-shirts (https://www.booster.com/josephmichaelsurdyka), a Facebook page to raise awareness and ask for prayers, and an EverRibbon page created for donations https://www.everribbon.com/ribbon/feeditems/17189. Please help! This family's fight is just beginning. Thank you Lincoln for supporting this young family!
About a month after his first birthday, a little Lincolnite boy by the name of Joseph Michael Surdyka was diagnosed with brain cancer. Braincancer. As if the word "cancer" isn't devastating enough for a parent to hear, little baby Joe needed a life saving operation to remove a tumor from his brain immediately. The then 13 month old toddler underwent surgery 3 days after his diagnosis while his parents were still digesting the news. After reviewing the pathology results from the tumor removed from Joseph's brain, it was determined that the cancer was anaplastic ependymoma grade 3, a very aggressive brain cancer. Damn. The removal of the tumor wasn't the end of the treatment process for this happy-go-lucky little toddler, it was just the beginning. This little boy's fight would take him and his family across the country while bringing the people of his hometown together in support of this young family, as adversity does when another Lincoln family needs community support.
The next few months would turn into a long journey for baby Joe and his family. Born April 6, 2013, this gorgeous little boy had already been through being sick every day, a diagnosis of brain cancer, and brain surgery by the time he was 13 months old. What's more -- his family would be given the devastating news that he needed 30 proton treatments to ensure the cancer would not return, and that they could not be administered at a local hospital. Instead, the family would need to travel to Boston, Massachusetts and would need to remain there by Joseph's side until August 5 of this year. His mother, Jamie Lynn wrote on Instagram, "Life is a book. Each page is written as you live it. Everyone's story is different and there is always a chapter that will break your heart." Even as I write this, my heart breaks for this family and what they've already endured. They are strong, beautiful, and blessed with a little fighter who hasn't given up. Backed by a community of supportive, caring people who seem to always dig deep for those in need, this family will continue to heal and overcome this horrid sickness. The family has already raised $14,900, only $10,100 from their goal of $25,000. They plan to donate anything left over after covering baby Joe's treatments as well as the debt they've incurred to other families going through the same. These are remarkable people who've gone through every parent's worst nightmare and have shone through the darkest night.
Who better to tell this story than Joseph's mother, Jamie Lynn? In her own words, "Joseph Michael Surdyka was born on April 6th 2013, he was only 2 days late.. mind you, we were in labor and delivery for 30 hours.. So really, in my eyes our first and only baby was right on time... Joseph's time. The most perfect time. He was 9 pounds 3 ounces.. Much bigger than mommy and daddy thought! He held his head up high hours after he was born while laying on daddy. Joseph hit all his mile stones on time and some further ahead than others born the same time as him. He was so strong early on....All up until early March of this year 2014. He had started taking steps two weeks before his first birthday, which was very exciting for mommy, daddy and everyone close to baby Joseph. All of the sudden, he regressed and stopped trying to walk. At the same time he started puking in the mornings. Once every other morning he puked when he woke up.. And when I say puke I mean.. Joseph was projectile puking, everything that went into his body until everything was out!! The puking increased to every single day, once in the morning. Then he would go to the baby sitter and everything was fine. He would play and act normal. The puking became consistent and his fussiness increase. Everyone who is close to us suggested Joseph was teething. He was getting four teeth at one time. Mommy got a lot of teeth at one time and daddy had a pretty hard time teething too. Everyone who saw him- including his Nanna who is a Registered nurse for over 30 years had deemed it as teething. We had decided to take Joseph to his pediatrician for her opinion of the vomiting because it didn't seem normal to us as new parents. Mommy wasn't able to make it to that appointment but daddy told the doctor that Joseph had been vomiting every other morning for over a week and a half straight and now it's become every day, in the morning. Doctor said his ear looked looked a little red and prescribed antibiotics for possible ear infection. She expressed the importance of getting Joseph off the bottle due to tooth decay and sent us home. The vomiting continued for the next week and progressively got worse each day. Mommy called the on call nurse and told the nurse that he was still throwing up and he recommended we remove all dairy from his diet, so we started feeding almond milk. Mommy and daddy took Joseph back to the doctors that following week and the doctor said to stop the antibiotics cause his ears looked good..but prescribed another drug called Zantac for acid reflux. Mommy asked he doctor about regression on walking and the doctor stated it was normal. The doctor again, expressed how important it was to get Joseph off the bottle. Joseph was given three days of Zantac and feeding him upright, as recommended by his pediatrician. None of this seemed to help the vomiting. Mommy then contacting the on call nurse again who recommended us to go to another location within the practice that was available on weekends, so we went. The doctor we saw wrote a prescription that increased the dose of Zantac, then recommended we take Joseph to get some blood work done at the local Quest diagnostics ...she added that in order to get all the testing to find out what was really going on and to rule out all possibilities was to go to the emergency room. We left the clinic and took him home. Joseph vomited two more times after we got home..so we took him to the emergency room... We spent approximately 10 hours in the emergency room. Joseph had blood drawn, urine samples taken, X-ray and ultra sound with nothing telling us what was wrong and why he was puking so much. The emergency room doctor prescribed a drug called Zophran for nausea, which is usually prescribed to cancer patients going thru chemotherapy. It was very frustrating to be told that babies get sick like this and that it might just pass and we may not ever know what caused it. We took Joseph home and spent the next two days continuing to care for Joseph closely. Joseph refused to drink pedialyte for an entire day, which made him very dehydrated. Two days passed, but on the third morning Joseph threw up dark brown, which looked like blood. Mommy took him back to the emergency room. They hooked Joseph up to IV after taking blood that confirmed he was dehydrated. Joseph was admitted to the hospital where they put him on a clear liquids diet. We spent two days there until we were transferred to another hospital to see a pediatric gastro interologist. They inserted a NG tube down his nose into his stomach to clean Joseph's intestines out from what appeared to be constipation. At the same time, Joseph became lethargic and almost unresponsive. He cried at everything we would try to give him to make him feel better, but nothing worked. Finally, the GI doctors came in scratching their heads as to what was going on. Joseph's grandmother had expressed her feelings of the lethargy and mentioned doing a CT scan of his brain. The doctors agreed to preformed the CT scan. After about 20 mins of taking the scan and getting the images back, the doctors walked in and called mommy and daddy out of the room. We were taken to a computer screen showing images of our baby Joseph's brain. The doctor began to explain what we were looking at. A huge mass that wasn't supposed to be there. We couldn't believe what we were looking at. Our lives changed forever. Joseph had to be rushed up to the pediatric intensive care unit to have a drain place into his tiny skull. The tumor had grown so big that it was blocking his spinal fluid from draining. The spinal fluid had backed up into his brain, causing hydrocephalus. Joseph was experiencing extremely painful headaches, dizziness and puking from the hydrocephalus. Once the drain was place in his skull they needed to performed an MRI to get detailed pictures of the tumor causing all the problems. This all happened on a Friday and they scheduled Joseph for surgery on Monday. Three nights and four days had to pass until they could remove the tumor. Surgery day came and they had Joseph scheduled for the first surgery in the day because this was going to take at least six to eight hours to complete. After a long morning of waiting, the neuro surgeon came out of the operating room and explained tat Joseph was doing well and she believed she was able to get all of the tumor out. Another MRI needed to be completed directly after surgery to confirm all of the tumor had been removed. The doctor told us she believed the type of tumor was called ependymoma based on the location of the tumor and Joseph's age. MRI confirmed the tumor was completely removed and after another week of patiently awaiting pathology results confirmed the tumor was a malignant type. Our perfect baby boy has cancer. That horrible, terrifying word cancer and our baby has it. Now, I did skip over details following Joseph's awakening from surgery. The six days and seven nights following surgery were nothing we could have ever been prepped for. They call it posteria fossa syndrome and Joseph has it. I mean, he did have to undergo brain surgery. Everything we do is ran by the brain. Joseph awoke and his eyes were crossed and it didn't seem like he had control over where they went. He was very upset by this. He couldn't see for about a week. He cried for days and night straight. Eventually, Joseph stopped crying as much and tried to use his arms and we noticed he couldn't control where they went. He couldn't move his head either. During the surgery, they had to cut open the back of his head and neck, separating his neck muscles in the process. It was about a week after surgery when we realized Joseph couldn't do anything and would have to relearn everything all over again. Moving forward to pathology results and the plan of treatment meeting with the oncology team. They gave us a name to this monstrous tumor called anaplastic ependymoma grade III. There are grade I, grade II, grade II, and grade III. There are two types of grade II. Our baby Joseph seriously has a grade III??!! You have got to be kidding me!! My baby had been so healthy. Not a single problem. Deep down my heart knew it was a grade III because of how fast everything happened. Joseph went from being the most perfect baby ever to horribly fussy and upset baby that mommy couldn't even make happy. We all had a meeting with the oncology team of doctors. Mommy, daddy, nana, grandpa, a family friend, the neuro surgeon and our nurse was all in the room. The oncology doctor began to explain the grade of the tumor. He explained there was no chemotherapy treatment that has been proven effective to treat this type of tumor and that Joseph was too young to have photon radiation. My babies future was portrayed to be very grim. We, as a family, asked a lot of questions and expressed how important the quality of life was to us. The team of doctors recommended we could put Joseph in a clinical trial at Stanford where he would receive a couple years of chemotherapy treatments and traditional photon radiation later on at the earliest age of three years old. As a family, we declined further treatments. During the month long stay in the hospital, mommy was able to find a group of parents who have babies and young children who have experienced ependymoma. Even though this story is very sad and unfortunate. There are things to be thankful for. Social media is one of them. I cannot begin to express how thankful and grateful I am to have such an amazing support system. Family and friends and friends of families have been praying for baby Joseph since the days we were looking for answers to the puking. A group of parents online shared stories of the outcomes after something called proton radiation therapy. Who better to get advice from than the parents raising the children who have overcome this thing! I am writing this story now sitting in Boston Massachusetts, where we traveled to from California to receive proton radiation therapy. In four days, Joseph will receive his first treatment. Joseph has to have a port access installed in his chest tomorrow because he is going to have to be put under anesthesia every day he has a treatment. Proton radiation side effects include a lot. The most common are hearing loss, hormone deficiency, thyroid problems, and motor skill challenges. There are many many more side effects that may happen but most of them may not show up until two to ten years after treatment. Even after proton radiation, there is still an 20% chance the tumor will return within five years. Everyday is counted as a blessing. 
This family has already overcome so much, and needs continued prayers and support from all of us. Please click on the following links to show your support and provide any kind of monetary donation that you can afford. I've seen so much community support myself, initially learning of this family and their fight while driving down East Avenue in Lincoln and seeing a little boy named Cashie set up one Saturday at his lemonade stand to raise money for the Surdyka family. With his dad supervising, 4 year old Cashie sat out in the heat serving lemonade to collect money for Baby Joe who's family is very close to Cashie's. This touched my heart; Cashie could have been raising money for a video game he wanted or a new bike or whatever. Instead, he wanted to show his support and love for his little friend. There was a car wash on Baby Joe's behalf on June 28th, and other fundraising measures such as t-shirts (https://www.booster.com/josephmichaelsurdyka), a Facebook page to raise awareness and ask for prayers, and an EverRibbon page created for donations https://www.everribbon.com/ribbon/feeditems/17189. Please help! This family's fight is just beginning. Thank you Lincoln for supporting this young family!
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