Helen Tully 2 years old
Diagnosis:
Helen was discovered to have rhabdomyosarcoma in February 2008. (THIS IS WHAT THE DOCTORS FIRST SUSPECTED PAUL HAD.)
Helen's Story:
When Helen was born in 2007 in Latvia, she was a happy, healthy baby. Just eight months later, in February 2008, her mother, Andra, noticed a bruise on one of Helen’s buttocks. Concerned, she took her daughter to the pediatrician, who dismissed the bruise as nothing more than the result of Helen rolling over on a toy. But when a pea-like lump appeared overnight, and the bruise continued to spread, Andra took Helen to another doctor. He performed an ultrasound, and the results it revealed were devastating. Baby Helen had tumors on her pelvis. A follow-up MRI confirmed the presence of tumors, and surgery was scheduled for a week later.
Andra e-mailed a family friend in the United States to explain that she might be hard to reach for awhile because Helen was ill. The friend requested that she e-mail him Helen’s scans so that he could share them with friends of his who were physicians. He called Andra back quickly, and his advice was alarming. The physicians had reviewed the scans and felt that surgery would be dangerous. They recommended that Andra and her husband, John, bring little Helen to the U.S. for treatment, and one of the hospitals they recommended was St. Jude Children’s Research Hospital.
Andra and John searched online for the best options for Helen’s long-term treatment. St. Jude kept coming up, and since John had family in the area, they decided that St. Jude might indeed be the best place for their baby. Their doctor provided a referral, and the next few days were a whirlwind as the family prepared to travel to Memphis.
At St. Jude:
At St. Jude, doctors determined that Helen suffered from rhabdomyosarcoma, the most common, aggressive soft tissue tumor in children. Because of the size of Helen’s tumor, she could not undergo surgery right away. Doctors started her on a 54-week chemotherapy treatment plan. After her first two rounds of chemotherapy, Helen’s tumor had shrunken about 60 percent, much to her family’s delight. Helen later underwent surgery to remove the tumor, and radiation. Today, her scans show no evidence of disease.
“If we had not come to St. Jude, I don’t think Helen would have celebrated her first birthday,” Andra said. “In Latvia, we don’t have the medicine they have here. At St. Jude, the doctors and nurses are so wonderful, they care so much. We know Helen is getting the best possible care. Whatever the children want or need, whether it is ice cream or an MRI, they get. It’s amazing.” Helen is finished with treatment and returns to St. Jude every three months for checkups. She loves music, dancing and playing with her older brother, Martin.
Tuesday 15 September 2009
Saturday 8 August 2009
St. Jude's Patients of the Month for August
Javon and Jakayla Bass 8 and 3 years old
Diagnosis:
Javon was discovered to have acute lymphoblastic leukemia (ALL) in 2003 and his sister Jakayla was found to suffer from ALL in 2008.
Javon and Jakayla's Story:
When Javon was 2 years old, he was diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer. He underwent three years of chemotherapy at St. Jude Children's Research Hospital. Near the end of his treatment, doctors discovered Javon had suffered a relapse and would need more chemotherapy, as well as radiation. Javon began his new course of treatment at St. Jude, and was nearly always accompanied by his mom, Lisa, and baby sister, Jakayla.
In fall 2008, about a month before Javon finished treatment for a second time, Jakayla became sick. She had the symptoms of a cold, and then she stopped eating. Lisa took her to their local doctor, who did blood work. The results of those tests were troubling, and the doctor quickly referred the family to St. Jude.
At St. Jude:
Faced with the possibility that not one, but two, of her children were suffering from cancer, Lisa was devastated. "I thought I was in a dream, and I'd wake up," she said. But she trusted the medical experts at St. Jude.
St. Jude doctors quickly determined that, like her brother, Jakayla suffered from acute lymphoblastic leukemia. She began an intense chemotherapy protocol.
Lisa says that it was hard for Javon to learn that his little sister had cancer too, but the Child Life specialists at St. Jude explained to him that he could help her get through it, and that made him feel better.
The two children couldn't be closer. They like to sing together and play Gameboy™. "Jakayla loves Javon," Lisa said. "She wants him always by her side."
And although Jakayla still has two more years of treatment to go, Lisa is happy to report that her little girl is in remission.
August 2009
Diagnosis:
Javon was discovered to have acute lymphoblastic leukemia (ALL) in 2003 and his sister Jakayla was found to suffer from ALL in 2008.
Javon and Jakayla's Story:
When Javon was 2 years old, he was diagnosed with acute lymphoblastic leukemia, the most common form of childhood cancer. He underwent three years of chemotherapy at St. Jude Children's Research Hospital. Near the end of his treatment, doctors discovered Javon had suffered a relapse and would need more chemotherapy, as well as radiation. Javon began his new course of treatment at St. Jude, and was nearly always accompanied by his mom, Lisa, and baby sister, Jakayla.
In fall 2008, about a month before Javon finished treatment for a second time, Jakayla became sick. She had the symptoms of a cold, and then she stopped eating. Lisa took her to their local doctor, who did blood work. The results of those tests were troubling, and the doctor quickly referred the family to St. Jude.
At St. Jude:
Faced with the possibility that not one, but two, of her children were suffering from cancer, Lisa was devastated. "I thought I was in a dream, and I'd wake up," she said. But she trusted the medical experts at St. Jude.
St. Jude doctors quickly determined that, like her brother, Jakayla suffered from acute lymphoblastic leukemia. She began an intense chemotherapy protocol.
Lisa says that it was hard for Javon to learn that his little sister had cancer too, but the Child Life specialists at St. Jude explained to him that he could help her get through it, and that made him feel better.
The two children couldn't be closer. They like to sing together and play Gameboy™. "Jakayla loves Javon," Lisa said. "She wants him always by her side."
And although Jakayla still has two more years of treatment to go, Lisa is happy to report that her little girl is in remission.
August 2009
Thursday 16 July 2009
St. Jude Patient of the Month for July
Robert Brindle 9 years old
Diagnosis:
Robert was found to suffer from acute lymphoblastic leukemia in December 2008.
Robert's Story:
When 8-year-old Robert unwrapped a new Xbox 360 on Christmas morning, his parents immediately realized something was wrong. Robert, who had long coveted the video game console, showed no excitement for the gift. That weekend, Robert developed terrible nosebleeds and was listless. By Tuesday, he wasn’t feeling any better. His doctor ordered blood work, which revealed devastating news—Robert was suffering from acute lymphoblastic leukemia, the most common form of childhood cancer. The doctor referred him to St. Jude Children’s Research Hospital.
At St. Jude:
When Robert and his parents arrived at St. Jude later that evening, they were afraid. “I couldn’t wrap my head around the fact Robert had cancer,” his mother said. But right away, they felt at ease. “Someone was waiting for us,” she said. “They knew who Robert was as soon as we arrived.”
Robert started a two-and-a-half year treatment protocol immediately. He takes oral chemotherapy every night, and visits St. Jude once a week for intravenous chemotherapy. Robert is a bright child who often asks his doctors at St. Jude very detailed questions about his treatment. “He trusts them,” said his mom. “The staff is very straight forward and they explain everything to him.”
Diagnosis:
Robert was found to suffer from acute lymphoblastic leukemia in December 2008.
Robert's Story:
When 8-year-old Robert unwrapped a new Xbox 360 on Christmas morning, his parents immediately realized something was wrong. Robert, who had long coveted the video game console, showed no excitement for the gift. That weekend, Robert developed terrible nosebleeds and was listless. By Tuesday, he wasn’t feeling any better. His doctor ordered blood work, which revealed devastating news—Robert was suffering from acute lymphoblastic leukemia, the most common form of childhood cancer. The doctor referred him to St. Jude Children’s Research Hospital.
At St. Jude:
When Robert and his parents arrived at St. Jude later that evening, they were afraid. “I couldn’t wrap my head around the fact Robert had cancer,” his mother said. But right away, they felt at ease. “Someone was waiting for us,” she said. “They knew who Robert was as soon as we arrived.”
Robert started a two-and-a-half year treatment protocol immediately. He takes oral chemotherapy every night, and visits St. Jude once a week for intravenous chemotherapy. Robert is a bright child who often asks his doctors at St. Jude very detailed questions about his treatment. “He trusts them,” said his mom. “The staff is very straight forward and they explain everything to him.”
Wednesday 3 June 2009
St. Jude's Patient of the Month for June
Talyn Conley 2 years old
Diagnosis:
Talyn was found to suffer from bilateral retinoblastoma in April 2008.
Talyn's Story:
The first indication that something was wrong with Talyn came during a well baby checkup when she was 10 months old. Talyn’s doctor noticed a white glare in her eyes and sent Talyn and her mom to a specialist. The news was devastating. Talyn suffered from cancerous tumors in both her eyes, known as bilateral retinoblastoma.
Talyn was referred to St. Jude Children’s Research Hospital right away. “We didn’t have time to go home,” said Talyn’s mom. “Once the doctor said we needed to go to St. Jude, we got right on a plane. Our whole world changed overnight.” Within hours, Talyn and her parents were on their way to Memphis..
At St. Jude:
When they arrived at St. Jude, Talyn’s parents were full of worry, but St. Jude staff assured them that their baby was at the best place possible for her treatment. Talyn underwent seven months of chemotherapy and four laser surgeries on her eyes.
Talyn’s parents felt anxious about the cost of their daughter’s medical treatment, and they were understandably overwhelmed. Talyn’s dad said he would work three jobs if necessary to save his little girl.
But when they learned St. Jude provides treatment regardless of the family’s ability to pay, they were amazed and relieved. “We didn’t know that St. Jude helps out so much,” Talyn’s mom said. “It was a big load off our shoulders.” They were able to focus on what was important—getting Talyn well.
Talyn responded well to treatment. Her doctors are hopeful they were able to save her eyesight. In December, Talyn was able to return home in time for Christmas. She visits St. Jude every six weeks for checkups. Talyn is walking and talking, and has a new puppy with whom she loves to play.
Diagnosis:
Talyn was found to suffer from bilateral retinoblastoma in April 2008.
Talyn's Story:
The first indication that something was wrong with Talyn came during a well baby checkup when she was 10 months old. Talyn’s doctor noticed a white glare in her eyes and sent Talyn and her mom to a specialist. The news was devastating. Talyn suffered from cancerous tumors in both her eyes, known as bilateral retinoblastoma.
Talyn was referred to St. Jude Children’s Research Hospital right away. “We didn’t have time to go home,” said Talyn’s mom. “Once the doctor said we needed to go to St. Jude, we got right on a plane. Our whole world changed overnight.” Within hours, Talyn and her parents were on their way to Memphis..
At St. Jude:
When they arrived at St. Jude, Talyn’s parents were full of worry, but St. Jude staff assured them that their baby was at the best place possible for her treatment. Talyn underwent seven months of chemotherapy and four laser surgeries on her eyes.
Talyn’s parents felt anxious about the cost of their daughter’s medical treatment, and they were understandably overwhelmed. Talyn’s dad said he would work three jobs if necessary to save his little girl.
But when they learned St. Jude provides treatment regardless of the family’s ability to pay, they were amazed and relieved. “We didn’t know that St. Jude helps out so much,” Talyn’s mom said. “It was a big load off our shoulders.” They were able to focus on what was important—getting Talyn well.
Talyn responded well to treatment. Her doctors are hopeful they were able to save her eyesight. In December, Talyn was able to return home in time for Christmas. She visits St. Jude every six weeks for checkups. Talyn is walking and talking, and has a new puppy with whom she loves to play.
Friday 8 May 2009
Plateau...
I took Paul in this morning to have "the mass" measured. To recap, they removed a mass on Feb. 5, and, since then, we've gone monthly to watch the thing grow back. It is supposed to stop growing at some point and then shrink up and go away. The only danger is if it were to grow big enough to hit something important (closest important thing being his windpipe).....it's not nearly that big at this point. From March to April, it grew quite fast and the fear was that it would continue to grow at that rate.However, today's ultrasound showed that its growth has levelled off. It was, essentially, the same size today that it was a month ago.
So, this is another answered prayer. YEA!!
Sunday 3 May 2009
St. Jude's Patient of the Month for May
Ellen Taylor 5 years old
Diagnosis:
Ellen was found to suffer from non-Hodgkin lymphoma in February 2008.
Ellen's Story:
The mother of 3-year-old Ellen was plagued with worry over her daughter’s swollen lymph nodes, even though doctors repeatedly told her it was nothing.
They insisted the bumps on Ellen’s head and neck were caused by a simple infection. But after three months of taking antibiotics with no improvement, Ellen’s primary care doctor examined the bump on her head and said, “It’s not good. I don’t know what this is, but we need to get it off.” The doctor sent them immediately to the local children’s hospital, where the family was devastated to learn their little girl had non-Hodgkin lymphoma. The doctor referred Ellen to St. Jude Children’s Research Hospital.
At St. Jude:
Ellen’s mom remembered how terrified she and her husband were when they arrived to St. Jude. “We were at the security gate, and you could see the devastation on our faces. The security guard put his hand on my husband’s and said, ‘You are in the right place.’”
Doctors immediately placed Ellen on a two-and-a-half-year protocol of chemotherapy. The treatment is tough, but Ellen has been brave.
Ellen’s mom says there are two miracles at St. Jude: the cures the hospital provides and the beautiful people she’s met during this experience with her daughter—people like the doctors and nurses who care for her daughter, as well as the volunteers and donors who give so generously to St. Jude.
Darlene, a nurse in the medicine room, knows how much Ellen hates shots—but also knows how much she loves the Wizard of Oz. So when Ellen gets her chemotherapy shots, they hold hands and repeat, “There’s no place like home. There’s no place like home. There’s no place like home.” Ellen’s mom said these small acts of kindness mean the world to their family.
Ellen is responding well to treatment, and her prognosis is good. Ellen loves cooking with her dad and playing dress up. She also loves to sing, and she knows all the words to "The Star Spangled Banner" and "America the Beautiful."
May 2009
Diagnosis:
Ellen was found to suffer from non-Hodgkin lymphoma in February 2008.
Ellen's Story:
The mother of 3-year-old Ellen was plagued with worry over her daughter’s swollen lymph nodes, even though doctors repeatedly told her it was nothing.
They insisted the bumps on Ellen’s head and neck were caused by a simple infection. But after three months of taking antibiotics with no improvement, Ellen’s primary care doctor examined the bump on her head and said, “It’s not good. I don’t know what this is, but we need to get it off.” The doctor sent them immediately to the local children’s hospital, where the family was devastated to learn their little girl had non-Hodgkin lymphoma. The doctor referred Ellen to St. Jude Children’s Research Hospital.
At St. Jude:
Ellen’s mom remembered how terrified she and her husband were when they arrived to St. Jude. “We were at the security gate, and you could see the devastation on our faces. The security guard put his hand on my husband’s and said, ‘You are in the right place.’”
Doctors immediately placed Ellen on a two-and-a-half-year protocol of chemotherapy. The treatment is tough, but Ellen has been brave.
Ellen’s mom says there are two miracles at St. Jude: the cures the hospital provides and the beautiful people she’s met during this experience with her daughter—people like the doctors and nurses who care for her daughter, as well as the volunteers and donors who give so generously to St. Jude.
Darlene, a nurse in the medicine room, knows how much Ellen hates shots—but also knows how much she loves the Wizard of Oz. So when Ellen gets her chemotherapy shots, they hold hands and repeat, “There’s no place like home. There’s no place like home. There’s no place like home.” Ellen’s mom said these small acts of kindness mean the world to their family.
Ellen is responding well to treatment, and her prognosis is good. Ellen loves cooking with her dad and playing dress up. She also loves to sing, and she knows all the words to "The Star Spangled Banner" and "America the Beautiful."
May 2009
Tuesday 7 April 2009
Quick video of Paul in my lap...
I took this video not even thinking about Paul's "mass," but this is a great shot of it (when his double chin is not in the way!). Hopefully, someday, when this is all behind us, he'll be amazed to see this video, having no memory of this time.
Sunday 5 April 2009
St. Jude's Patient of the Month for April
Montana Oatman 3 years old
Diagnosis:
Montana was found to suffer from acute lymphoblastic leukemia (ALL) in November 2007.
Montana's Story:
Montana’s parents were immediately concerned when their normally active 2-year-old son suddenly seemed tired all the time. “We could tell something was wrong because he wanted to go to bed at 5 o’clock at night,” Montana’s dad said. “It wasn’t like him.”
After two trips to the pediatrician, the family was no closer to an answer, and Montana’s parents worried something bigger might be to blame. They took Montana to a third doctor, who also sensed something wasn’t right. He ordered a blood test, which revealed devastating news: Montana was suffering from ALL.
“When we found out, it was so shocking,” Montana’s mom said. The doctor recommended that Montana come to St. Jude Children’s Research Hospital for treatment right away.
At St. Jude:
At St. Jude, Montana’s parents felt instantly comforted.
“You walk inside, and you look up to see the brightly colored paintings,” Montana’s dad said. “It’s a beautiful place. More than that, medically, it was impressive. It gave you hope. You could tell they knew what they were doing.”
St. Jude doctors placed Montana on a three-year protocol of chemotherapy, and after three weeks of treatment, his family got the news every parent in this situation longs to hear: Montana was in remission. “I wasn’t expecting it that quickly,” Montana’s mom said. “It was the best moment.”
Today, Montana is able to continue chemotherapy from home, under the guidance of his St. Jude doctors. He returns to St. Jude every eight weeks for checkups, and Montana looks forward to these visits.
“Montana loves St. Jude and the people here despite the fact that some of the treatment is painful,” his dad said. “The fact that Montana loves St. Jude speaks volumes.”
Montana is once again able to enjoy his favorite things, like swimming and playing with his little sister. Plus, he’s getting ready to become a big brother for the second time.
Diagnosis:
Montana was found to suffer from acute lymphoblastic leukemia (ALL) in November 2007.
Montana's Story:
Montana’s parents were immediately concerned when their normally active 2-year-old son suddenly seemed tired all the time. “We could tell something was wrong because he wanted to go to bed at 5 o’clock at night,” Montana’s dad said. “It wasn’t like him.”
After two trips to the pediatrician, the family was no closer to an answer, and Montana’s parents worried something bigger might be to blame. They took Montana to a third doctor, who also sensed something wasn’t right. He ordered a blood test, which revealed devastating news: Montana was suffering from ALL.
“When we found out, it was so shocking,” Montana’s mom said. The doctor recommended that Montana come to St. Jude Children’s Research Hospital for treatment right away.
At St. Jude:
At St. Jude, Montana’s parents felt instantly comforted.
“You walk inside, and you look up to see the brightly colored paintings,” Montana’s dad said. “It’s a beautiful place. More than that, medically, it was impressive. It gave you hope. You could tell they knew what they were doing.”
St. Jude doctors placed Montana on a three-year protocol of chemotherapy, and after three weeks of treatment, his family got the news every parent in this situation longs to hear: Montana was in remission. “I wasn’t expecting it that quickly,” Montana’s mom said. “It was the best moment.”
Today, Montana is able to continue chemotherapy from home, under the guidance of his St. Jude doctors. He returns to St. Jude every eight weeks for checkups, and Montana looks forward to these visits.
“Montana loves St. Jude and the people here despite the fact that some of the treatment is painful,” his dad said. “The fact that Montana loves St. Jude speaks volumes.”
Montana is once again able to enjoy his favorite things, like swimming and playing with his little sister. Plus, he’s getting ready to become a big brother for the second time.
Friday 13 March 2009
Latest news...
Paul had an ultrasound today (a follow up to the Feb. 13 ultrasound which showed no tumor). We knew going in today that it had grown back because you can see and feel a lump---a little smaller than a marble---under the scar where he had surgery on Feb. 5. The ultrasound measured it and it's half the size of what they took out.
So, we're just supposed to watch it and go back for another ultrasound next month. Hopefully it will run its course and start to go away. Dr. Pressey said that he did some research and in looking back 20 years at Children's Hospital, they have seen 15 cases of "nodular fasciitis" and NONE of them required a second surgery. We're hoping to fit that pattern, but are worried about how fast this thing is growing. In the meantime, there isn't much information out there about "nodular fasciitis" so they will probably write an article about Paul......wow! Famous by the age of 6 months! :)
Paul still feels well and is doing fine otherwise. We'll go back in 4 weeks and get more news....and until then, we will try to learn the art of patience.
Monday 2 March 2009
St. Jude's patient of the month for March
McKaylee Borklund 1 year old
Diagnosis:
McKaylee was found to suffer from anaplastic astrocytoma in June 2008.
McKaylee's Story:
McKaylee was a fussy baby. At first, her doctor thought she had acid reflux. But nothing seemed to bring the baby relief. Then, when McKaylee was just 7 months old, a CT scan showed she had fluid on the brain. Her parents were relieved because this condition could explain McKaylee’s fussiness. Doctors scheduled a surgery to insert a shunt that would drain the fluid and relieve the pressure McKaylee felt.
But just before McKaylee went into surgery, an MRI revealed a brain tumor. The doctors believed the tumor was benign, and told McKaylee's family they would monitor it. But, during a follow up visit several months later, McKaylee's family learned devastating news—the tumor had grown significantly and it was not benign. A biopsy revealed the tumor was actually a rare and aggressive malignant tumor called anaplastic astrocytoma.
Just days after McKaylee's first birthday, her family was at St. Jude Children's Research Hospital. But in the midst of such overwhelming news, her mother felt a sense of calm upon arriving at St. Jude. "Seeing the hospital for the first time was just awesome," she said. "I had chills. I knew it was a life-changing moment."
At St. Jude:
McKaylee started chemotherapy treatment immediately. Her protocol will last for approximately 15 months. "McKaylee is not scared or apprehensive about anything at the hospital," her mom said. "She knows her routine now. It's amazing to me how resilient kids are."
McKaylee's family is so grateful for the people who help support St. Jude. Not having to worry about the costs associated with McKaylee’s care has allowed her family to focus on their precious McKaylee. "Watching McKaylee go through chemotherapy has been hard," said her mom. "But meeting patients here, that's changed the face of this tragedy because there's so much support. That's definitely been a positive thing." McKaylee loves to lavish her baby dolls with kisses and hugs, and she adores her older brother. McKaylee has a play kitchen at home and delights in making 'food' for her family.
Diagnosis:
McKaylee was found to suffer from anaplastic astrocytoma in June 2008.
McKaylee's Story:
McKaylee was a fussy baby. At first, her doctor thought she had acid reflux. But nothing seemed to bring the baby relief. Then, when McKaylee was just 7 months old, a CT scan showed she had fluid on the brain. Her parents were relieved because this condition could explain McKaylee’s fussiness. Doctors scheduled a surgery to insert a shunt that would drain the fluid and relieve the pressure McKaylee felt.
But just before McKaylee went into surgery, an MRI revealed a brain tumor. The doctors believed the tumor was benign, and told McKaylee's family they would monitor it. But, during a follow up visit several months later, McKaylee's family learned devastating news—the tumor had grown significantly and it was not benign. A biopsy revealed the tumor was actually a rare and aggressive malignant tumor called anaplastic astrocytoma.
Just days after McKaylee's first birthday, her family was at St. Jude Children's Research Hospital. But in the midst of such overwhelming news, her mother felt a sense of calm upon arriving at St. Jude. "Seeing the hospital for the first time was just awesome," she said. "I had chills. I knew it was a life-changing moment."
At St. Jude:
McKaylee started chemotherapy treatment immediately. Her protocol will last for approximately 15 months. "McKaylee is not scared or apprehensive about anything at the hospital," her mom said. "She knows her routine now. It's amazing to me how resilient kids are."
McKaylee's family is so grateful for the people who help support St. Jude. Not having to worry about the costs associated with McKaylee’s care has allowed her family to focus on their precious McKaylee. "Watching McKaylee go through chemotherapy has been hard," said her mom. "But meeting patients here, that's changed the face of this tragedy because there's so much support. That's definitely been a positive thing." McKaylee loves to lavish her baby dolls with kisses and hugs, and she adores her older brother. McKaylee has a play kitchen at home and delights in making 'food' for her family.
Sunday 15 February 2009
Apology and looking outward
A doctor called us late this past week and apologized for the "misdiagnosis" of cancer. I was starting to question my listening skills, but she verified we were, in fact, told it was for sure malignant cancer on Friday, Feb. 6. Then Monday, after such a long weekend, we were told it was 90% likely MPNST---a certain type of cancer. But apparently, the Birmingham pathologists started doubting themselves on Tuesday and were glad they had sent it off to Emory for verification. On Wednesday, our Dr. Pressey says he ran into the pathologist who said to him, "I'm starting to think it's some rare form of fasciitis. We should hear from Dr. Weiss (at Emory) soon." Then Wednesday night is when we found out it was nodular fasciitis and not cancer.
So, I want to pass along this apology to all who were so emotionally involved with us. It's really hard to believe it was only 7 days (I count the day Paul had surgery and the surgeon told us it absolutely looked like cancer to him). What a 7 days it was! We told the apologizing doctor that so long as she didn't call back and tell us it was in fact malignant, we were okay with the crazy week we had. What a learning experience!!
And now, we're left with a new outlook on life----a new love for our children, a new appreciation for our friends and family, a new dependence on prayer, and a new sense of responsibility to those suffering. This has certainly been a life-changing experience. For starters, I pledge to pray for others as you have prayed for us. I want to be a support and a source of hope for others as so many people have been for us. And, I want to pray for miracles as you all have prayed for our little one. I know things don't always happen the way we want them to----as it has in our case with Paul----and I don't claim to understand this. I don't know why we escaped this and yet so many others really do have sweet, innocent children suffering from cancer or other terrible things. I am incredibly grateful for the miracle of Paul's tumor being benign and yet, I feel guilty that others do not get such good news.
For those who do not know, St. Jude is the patron saint of lost causes. He is one whose aid is sought when all hope is lost, especially in grave health matters and life-and-death situations. It is customary to make a vow that if he helps when called upon, one will publish a notice of thanks. And so, we THANK YOU, St. Jude!!
And now, I look to St. Jude hospital as a place to focus on others. They have a wonderful website and even feature a patient of the month. Anybody wanting to join me can pray for this month's patient and his family (www.stjude.org ):
So, I want to pass along this apology to all who were so emotionally involved with us. It's really hard to believe it was only 7 days (I count the day Paul had surgery and the surgeon told us it absolutely looked like cancer to him). What a 7 days it was! We told the apologizing doctor that so long as she didn't call back and tell us it was in fact malignant, we were okay with the crazy week we had. What a learning experience!!
And now, we're left with a new outlook on life----a new love for our children, a new appreciation for our friends and family, a new dependence on prayer, and a new sense of responsibility to those suffering. This has certainly been a life-changing experience. For starters, I pledge to pray for others as you have prayed for us. I want to be a support and a source of hope for others as so many people have been for us. And, I want to pray for miracles as you all have prayed for our little one. I know things don't always happen the way we want them to----as it has in our case with Paul----and I don't claim to understand this. I don't know why we escaped this and yet so many others really do have sweet, innocent children suffering from cancer or other terrible things. I am incredibly grateful for the miracle of Paul's tumor being benign and yet, I feel guilty that others do not get such good news.
For those who do not know, St. Jude is the patron saint of lost causes. He is one whose aid is sought when all hope is lost, especially in grave health matters and life-and-death situations. It is customary to make a vow that if he helps when called upon, one will publish a notice of thanks. And so, we THANK YOU, St. Jude!!
And now, I look to St. Jude hospital as a place to focus on others. They have a wonderful website and even feature a patient of the month. Anybody wanting to join me can pray for this month's patient and his family (www.stjude.org ):
Joshua Solomon, 5 years old, was found to have a brain stem glioma in August 2008.
Joshua's Story:
Joshua is a sweet-natured boy. He has an engaging smile and he loves to give hugs. An only child, Joshua is the apple of his parents’ eyes. “He makes our day, every day,” said his mom. When Joshua suddenly fell ill during a family trip in late August, his family immediately rallied around him.
During the trip, Joshua developed neck pain and started to vomit. His family rushed him to a local hospital where the emergency room doctor ordered a CT scan and, when the results came in, sent the family to a larger hospital with a pediatric intensive care unit. "We didn't really know why he was sending us there. We were kind of in a daze, and just praying," Joshua's mom remembered. At the larger hospital, doctors ordered an MRI, which revealed devastating news for Joshua's parents: their boy suffered from an inoperable brain stem glioma, a type of brain tumor.
But there was hope on the horizon. Joshua's parents were familiar with St. Jude Children’s Research Hospital and asked his doctor for a referral.
At St. Jude:
Joshua underwent chemotherapy and 30 rounds of radiation. Throughout it all, St. Jude provided Joshua and his family everything they needed. “The doctors are first class,” Joshua's mom said. “The care and concern St. Jude gave us was amazing.”
Joshua's parents are astonished by the generosity of people who give to St. Jude. “Because of them, St. Jude provides care for all children,” said Joshua's mom. “Whether families have insurance or not, the patients get first class care. I know Danny Thomas is looking down from Heaven and smiling.”
Joshua finished his treatment in November, and he returns to St. Jude every three months for checkups. He is in preschool and he loves Thomas the Train. Recently, Joshua went horseback riding for the first time. “He loved it,” his mom said. “He can’t wait to go back."
Thursday 12 February 2009
The big meeting
We had a very good meeting with Dr. Pressey today. He puts me in a list kind of mood because he is very precise and very thorough, so here goes....
The facts at this point:
1. Paul does not have cancer.
2. He has an EXTREMELY RARE benign tumor on his right collarbone classified as "nodular fasciitis"
3. One of the worst things about these tumors is that----as rare as they are----they are commonly misdiagnosed as malignant tumors. There have been several cases in which people have undergone chemo and intense surgeries only to LATER discover it was fasciitis.
4. A week ago today, Paul had surgery and what was then believed to be the original entire mass was removed. The surgeon saw that it had grown "finger-like" shapes down onto his pectoral muscle, but saw nothing else.
5. HOWEVER, yesterday we had the CT scan and there is a very large (about the size of a golf ball, which is pretty freaking big when you only weigh 17 pounds!!) tumor present. Was this there a week ago in the surgery? Or did it grow within the last week? We don't know.
6. "Nodular fasciitis" tumors tend to grow very rapidly. They have the ability to reach their maximum size (which varies---we have no idea how big this thing could possibly get), then they start shrinking and are eventually absorbed by the body
7. HOWEVER, sometimes surgery is necessary.
OUR PLAN OF ACTION FROM HERE:
The CT scan yesterday gave the doctors a great look at this thing. They know exactly where it is now and how big it is. We will have an ultrasound tomorrow to get a baseline ultrasound look at the tumor. Then 4 weeks later, we'll get another ultrasound done so we can measure how fast it is growing......or, more hopefully, that it has decided to shrink. The best case scenario from here is that the tumor will start shrinking and disappear into the nether regions of Paul's body. The worst case scenario is that it will continue growing to the point that it is getting close to his windpipe and we'll have to have surgery to keep it away from there. If it continues to grow after that, we could be forced to have multiple surgeries.
THE AMAZING NEWS is that it is not cancer. We are not out of the woods yet, but the sense of urgency has been relieved.
We are so grateful and so humbled. It will take a long time to process what all has happened the past 2 weeks. More on that another time.
Thank you again for your kindness, your incredible friendship, and your loving prayers. We are so blessed by all in our amazing network of friends and family.
The facts at this point:
1. Paul does not have cancer.
2. He has an EXTREMELY RARE benign tumor on his right collarbone classified as "nodular fasciitis"
3. One of the worst things about these tumors is that----as rare as they are----they are commonly misdiagnosed as malignant tumors. There have been several cases in which people have undergone chemo and intense surgeries only to LATER discover it was fasciitis.
4. A week ago today, Paul had surgery and what was then believed to be the original entire mass was removed. The surgeon saw that it had grown "finger-like" shapes down onto his pectoral muscle, but saw nothing else.
5. HOWEVER, yesterday we had the CT scan and there is a very large (about the size of a golf ball, which is pretty freaking big when you only weigh 17 pounds!!) tumor present. Was this there a week ago in the surgery? Or did it grow within the last week? We don't know.
6. "Nodular fasciitis" tumors tend to grow very rapidly. They have the ability to reach their maximum size (which varies---we have no idea how big this thing could possibly get), then they start shrinking and are eventually absorbed by the body
7. HOWEVER, sometimes surgery is necessary.
OUR PLAN OF ACTION FROM HERE:
The CT scan yesterday gave the doctors a great look at this thing. They know exactly where it is now and how big it is. We will have an ultrasound tomorrow to get a baseline ultrasound look at the tumor. Then 4 weeks later, we'll get another ultrasound done so we can measure how fast it is growing......or, more hopefully, that it has decided to shrink. The best case scenario from here is that the tumor will start shrinking and disappear into the nether regions of Paul's body. The worst case scenario is that it will continue growing to the point that it is getting close to his windpipe and we'll have to have surgery to keep it away from there. If it continues to grow after that, we could be forced to have multiple surgeries.
THE AMAZING NEWS is that it is not cancer. We are not out of the woods yet, but the sense of urgency has been relieved.
We are so grateful and so humbled. It will take a long time to process what all has happened the past 2 weeks. More on that another time.
Thank you again for your kindness, your incredible friendship, and your loving prayers. We are so blessed by all in our amazing network of friends and family.
Wednesday 11 February 2009
THE MIRACLE IS HERE!!!
We've just gotten a call from Dr. Pressey that Dr. Weiss----the pathologist in Atlanta----has declared PAUL DOES NOT HAVE CANCER!!
He has nodular fasciitis. Here is a definition from the Internet:
"Nodular fasciitis is an unusual benign reactive process affecting superficial and deep fascia. Its rapid growth, rich cellularity, high mitotic activity and poorly circumscribed nature result in it being easily misdiagnosed as a sarcomatous lesion."
Obviously, we are stunned! We will still meet with Dr. Pressey tomorrow to see the CT scan (and the golf ball sized "thing" growing off his collarbone).
All praise to God for this miracle!! Thank God for answered prayers!
Thank you all for your prayers. I am bawling with joy.
More later....
He has nodular fasciitis. Here is a definition from the Internet:
"Nodular fasciitis is an unusual benign reactive process affecting superficial and deep fascia. Its rapid growth, rich cellularity, high mitotic activity and poorly circumscribed nature result in it being easily misdiagnosed as a sarcomatous lesion."
Obviously, we are stunned! We will still meet with Dr. Pressey tomorrow to see the CT scan (and the golf ball sized "thing" growing off his collarbone).
All praise to God for this miracle!! Thank God for answered prayers!
Thank you all for your prayers. I am bawling with joy.
More later....
CT scan
So, I'm shaking with adrenaline this morning. We talked to 2 different doctor-friends last night on the phone and got some great advice about how things may go at our meeting tomorrow. They both said Dr. Pressey will be wanting a CT scan to check how far this thing has spread so he can know if surgery is the next step or radiation/chemo to shrink it before surgery. Here's to hoping we can get a CT scan TODAY so tomorrow's meeting will be more productive (I don't want him to say, "Well, we'll know more after that scan. Why don't you call and set that up?")
Paul coughed a bit last night (as he usually does) ...let's pray that means nothing.
Paul coughed a bit last night (as he usually does) ...let's pray that means nothing.
Tuesday 10 February 2009
The roller coaster ride...
No real new news today, but a productive day nonetheless....
This morning I was really down about things. I felt nauseous and on the verge of tears all morning at work. Thankfully I didn't have to talk to anyone or I might have really lost it. It's just been such a hard year....moving back from England 7 1/2 months pregnant into a rental house that needs a lot of work done to it, then Luke got a staph infection from the insects that love him so and Caleb got an ear infection. Then Paul was born and tropical storm Faye hit all in the same weekend (so our lovely house flooded) so Paul's shining "coming home from the hospital" event was to go stay with my parents who were among the few who had electricity. Then there was the menengitis scare which put Paul in the hospital for 5 days and also the "Great Thanksgiving Poisonous Berries Debacle" in which Caleb landed a late night ER visit. This is not to mention a massive ant problem in our house and 3 ear infections between Chris and me! It hasn't been an easy transition back to the US.
However, after work, I got home and made some calls. First was to our insurance company. A nice lady named Ruth assured me everything was covered and if we get a new job (the hopeful plan) with new insurance, cancer would not qualify as a pre-existing condition because Paul is currently covered. THANK GOD for this. Her nice voice and good news brought on the tears. She said she'd be praying for Paul, and I was reminded of people's goodness......and of God's goodness.
This news---but mostly your uplifting comments which I sat down and read next----brought me back up the roller coaster ride. I called Sloan Kettering in NY and talked to a nice secretary who basically told me that Dr. Paul Meyers is the man but that she couldn't deal with me. We have to have the oncologist call her once the diagnosis is 100%, and things will move from there.
After that, I checked out an article a friend sent me (THANK YOU, RENIE!) by a lady whose teenage daughter went through all this. Here's the link:
This morning I was really down about things. I felt nauseous and on the verge of tears all morning at work. Thankfully I didn't have to talk to anyone or I might have really lost it. It's just been such a hard year....moving back from England 7 1/2 months pregnant into a rental house that needs a lot of work done to it, then Luke got a staph infection from the insects that love him so and Caleb got an ear infection. Then Paul was born and tropical storm Faye hit all in the same weekend (so our lovely house flooded) so Paul's shining "coming home from the hospital" event was to go stay with my parents who were among the few who had electricity. Then there was the menengitis scare which put Paul in the hospital for 5 days and also the "Great Thanksgiving Poisonous Berries Debacle" in which Caleb landed a late night ER visit. This is not to mention a massive ant problem in our house and 3 ear infections between Chris and me! It hasn't been an easy transition back to the US.
However, after work, I got home and made some calls. First was to our insurance company. A nice lady named Ruth assured me everything was covered and if we get a new job (the hopeful plan) with new insurance, cancer would not qualify as a pre-existing condition because Paul is currently covered. THANK GOD for this. Her nice voice and good news brought on the tears. She said she'd be praying for Paul, and I was reminded of people's goodness......and of God's goodness.
This news---but mostly your uplifting comments which I sat down and read next----brought me back up the roller coaster ride. I called Sloan Kettering in NY and talked to a nice secretary who basically told me that Dr. Paul Meyers is the man but that she couldn't deal with me. We have to have the oncologist call her once the diagnosis is 100%, and things will move from there.
After that, I checked out an article a friend sent me (THANK YOU, RENIE!) by a lady whose teenage daughter went through all this. Here's the link:
http://e-patients.net/archives/2008/10/all-mris-are-not-created-equal.html
I got in touch with this lady and we've been e-mailing all afternoon. She's got experience and wisdom and I'm amazed to have already connected with someone else about MPNST. She knows the leading doctors and is a real advocate for those with MPNST......and, most importantly, her daughter made a full recovery and is doing very well! What hope and what great news!
After that, I took the kids to the park and watched them play while I held Paul. It was a great afternoon.
Many of you have asked for specific things to pray for, so here goes:
1. a productive meeting with Dr. Pressey on Thursday
2. that the cancer has not spread to Paul's lungs (the biggest danger at this point)
3. that one more surgery will remove the bits that have spread and neither chemo nor radiation will be necessary
4. for the emotional roller coaster ride to end and for me to reach a steady place between motivated and hopeful
I will be thanking God for all the practical advice we are getting from doctor-friends and for the spiritual and emotional help from the rest of you!!
I got in touch with this lady and we've been e-mailing all afternoon. She's got experience and wisdom and I'm amazed to have already connected with someone else about MPNST. She knows the leading doctors and is a real advocate for those with MPNST......and, most importantly, her daughter made a full recovery and is doing very well! What hope and what great news!
After that, I took the kids to the park and watched them play while I held Paul. It was a great afternoon.
Many of you have asked for specific things to pray for, so here goes:
1. a productive meeting with Dr. Pressey on Thursday
2. that the cancer has not spread to Paul's lungs (the biggest danger at this point)
3. that one more surgery will remove the bits that have spread and neither chemo nor radiation will be necessary
4. for the emotional roller coaster ride to end and for me to reach a steady place between motivated and hopeful
I will be thanking God for all the practical advice we are getting from doctor-friends and for the spiritual and emotional help from the rest of you!!
Prayer to St. Peregrine, patron saint of cancer patients
O great St. Peregrine, you have been called "The Mighty," "The Wonder-Worker," because of the numerous miracles which you have obtained from God for those who have had recourse to you.
For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.
PAUL BARNETT
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
Amen
For so many years you bore in your own flesh this cancerous disease that destroys the very fibre of our being, and who had recourse to the source of all grace when the power of man could do no more. You were favoured with the vision of Jesus coming down from His Cross to heal your affliction. Ask of God and Our Lady, the cure of the sick whom we entrust to you.
PAUL BARNETT
Aided in this way by your powerful intercession, we shall sing to God, now and for all eternity, a song of gratitude for His great goodness and mercy.
Amen
Monday 9 February 2009
Pathology reports coming in...
We heard today that the pathologists are strongly leaning toward a diagnosis. They believe Paul has what is called "malignant peripheral nerve sheath tumor." The pathologists at Children's Hospital have not dealt with this before and have sent the slides off to a specialist at Emory to get her to verify their diagnosis. We should hopefully hear from her soon so we can move forward.
In the meantime, we have an appointment set up Thursday with a specialist at Children's. We will try to find out more about this kind of cancer before then so we can ask good questions. However, the internet is a scary place. We've found a few websites that seem to think this is quite curable, and we've found some sites that are terrifying us. Please pray this doctor (Dr. P) will be able to lead us well. Most likely, he will suggest we go to NY or Houston for a fairly major surgery. I'm ready to have a plan and tackle this thing.
I am scared, but I believe Paul will be healed.
In the meantime, we have an appointment set up Thursday with a specialist at Children's. We will try to find out more about this kind of cancer before then so we can ask good questions. However, the internet is a scary place. We've found a few websites that seem to think this is quite curable, and we've found some sites that are terrifying us. Please pray this doctor (Dr. P) will be able to lead us well. Most likely, he will suggest we go to NY or Houston for a fairly major surgery. I'm ready to have a plan and tackle this thing.
I am scared, but I believe Paul will be healed.
Paul's history...
Paul was born August 22, 2008 in Birmingham, AL. He was a healthy and beautiful baby---8 pounds and 12 ounces.
4 weeks later, he was in the hospital for extremely high fever. It turned out that he had enteroviral meningitis (which is not bacterial meningitis but more like a really bad cold). We were home from the hospital 5 days later relieved that he was okay.
The next couple of months, he coughed a lot, cried a lot, and was a horrible sleeper. We thought, "We've had 2 really easy babies and here's our tough one." Something didn't feel right but we just thought he was a little harder than our older boys.
On December 13, I woke up with a fever. I went to the "doc-in-the-box" and was prescribed an antibiotic for an ear infection. Paul (who was breastfeeding) started sleeping better almost immediately. I guess the antibiotic was helping him too. Our lives suddenly seemed easier and for the first time since his birth, we starting thinking things were going well.
Then, on January 2 (a Friday night), Chris found a lump on Paul's collarbone. Paul was in no pain and it didn't bother him when we touched it. We took him in that Monday, the 5th, and it was diagnosed as a broken collarbone. I repeatedly said, "We haven't dropped him. He's not rolling over yet. How in the world could he break his bone?" But, I was assured, it was obvious from the x-ray that he had broken it 10-14 days earlier because of how far along in the healing process it was. I was told that 2-3 weeks later the lump would be gone.....the lump was a normal part of the healing process.
We waited 3 weeks before calling to say that no, in fact, the lump was bigger. At this point, we were referred to a bone specialist who could help us find out why the break wasn't healing properly. Within 30 seconds, the bone specialist told us Paul didn't have any broken bones and that we needed to have an MRI or ultrasound done to see about having whatever it was removed.
We met Dr. M., our surgeon, the next morning. He did an ultrasound, determined it was a solid tissue mass, and told us he'd operate 2 days later. So, Feb. 5, Paul had surgery. Dr. M. removed the mass but told us that whatever it was, it looked like cancer and had certainly spread to the tissues around his shoulder (including Paul's pectoral muscle and the tissues surrounding the collarbone).
4 weeks later, he was in the hospital for extremely high fever. It turned out that he had enteroviral meningitis (which is not bacterial meningitis but more like a really bad cold). We were home from the hospital 5 days later relieved that he was okay.
The next couple of months, he coughed a lot, cried a lot, and was a horrible sleeper. We thought, "We've had 2 really easy babies and here's our tough one." Something didn't feel right but we just thought he was a little harder than our older boys.
On December 13, I woke up with a fever. I went to the "doc-in-the-box" and was prescribed an antibiotic for an ear infection. Paul (who was breastfeeding) started sleeping better almost immediately. I guess the antibiotic was helping him too. Our lives suddenly seemed easier and for the first time since his birth, we starting thinking things were going well.
Then, on January 2 (a Friday night), Chris found a lump on Paul's collarbone. Paul was in no pain and it didn't bother him when we touched it. We took him in that Monday, the 5th, and it was diagnosed as a broken collarbone. I repeatedly said, "We haven't dropped him. He's not rolling over yet. How in the world could he break his bone?" But, I was assured, it was obvious from the x-ray that he had broken it 10-14 days earlier because of how far along in the healing process it was. I was told that 2-3 weeks later the lump would be gone.....the lump was a normal part of the healing process.
We waited 3 weeks before calling to say that no, in fact, the lump was bigger. At this point, we were referred to a bone specialist who could help us find out why the break wasn't healing properly. Within 30 seconds, the bone specialist told us Paul didn't have any broken bones and that we needed to have an MRI or ultrasound done to see about having whatever it was removed.
We met Dr. M., our surgeon, the next morning. He did an ultrasound, determined it was a solid tissue mass, and told us he'd operate 2 days later. So, Feb. 5, Paul had surgery. Dr. M. removed the mass but told us that whatever it was, it looked like cancer and had certainly spread to the tissues around his shoulder (including Paul's pectoral muscle and the tissues surrounding the collarbone).
Sunday 8 February 2009
Purpose for this blog...
I write this blog to
a) help keep those interested in Paul's progress up-to-date
b) illicit prayers for Paul and the medical staff that will help him
c) document the miracle of Paul's healing
d) make connections with other families suffering from this rare cancer
I've been told most of my life that I'm a private person who is hard to get to know. It will be hard for me to "bear my soul" on a public venue like this, but I'd like to try so I really might be able to connect with others going through this, and so that I can genuinely ask for your prayers.
a) help keep those interested in Paul's progress up-to-date
b) illicit prayers for Paul and the medical staff that will help him
c) document the miracle of Paul's healing
d) make connections with other families suffering from this rare cancer
I've been told most of my life that I'm a private person who is hard to get to know. It will be hard for me to "bear my soul" on a public venue like this, but I'd like to try so I really might be able to connect with others going through this, and so that I can genuinely ask for your prayers.
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