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.
Wednesday, 3 June 2009
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.
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