Archive for the ‘Cancer and Blood Disorders’ Category

Mom to shave the day for childhood cancer

Monday, April 8th, 2013

Adrian

No mom should have to hold her child’s hand and tell him that his cancer has returned – after having his kidney removed, undergoing seven days of radiation and getting 25 weeks of chemo treatment.

But that’s exactly the position Stephanie Merfeld found herself in recently. Her son, Adrian, 11, was diagnosed with a Wilms’ tumor in October 2011. He immediately underwent extensive treatment. Three months later, his scans were clean. Six months later, tests showed the cancer had returned. Adrian went back on chemo. In March, his tumors had grown despite chemo. He’s undergoing daily radiation, except for weekends, for the next three weeks, Merfeld said.

“It sucks big time and naughty words go through my head all the time. It is what it is, and you put one foot in front of another and you walk,” Merfeld said. “You have to be strong for your kid. It’s scary. I’m scared. I don’t want to lose him.”

Merfeld is determined to keep other families from experiencing what hers has during the past 18 months. On April 11, she’ll go bald to help raise money for childhood cancer research – an area she says is critically underfunded.

“These kids need help, and they need help now,” she said.

You can shave a head and help save lives, too. Join Merfeld and us on our Minneapolis campus on Thursday from 5 p.m. to 8 p.m. to help raise money for the St. Baldrick’s Foundation, whose mission is to cure childhood cancer. Shavees show their support by shaving their heads voluntarily, and inspiring friends and family to donate money to support childhood cancer. Sign up here.

Video: Dr. Steve Haun, who works in our pediatric intensive care unit (PICU), already shaved his head for St. Baldrick’s. Will you?

Video: Watch last year’s shavees.

Alannah: A girl with heart

Tuesday, October 9th, 2012

Alannah Gillis Photo: Shari Fleming

God doesn’t give me more than I can handle.

That’s what 7-year-old Alannah Gillis said when she found out she had Stage IV neuroblastoma. And that’s what she had printed on custom rubber wristbands. Wristbands that she went on to sell in an effort to raise money for the Star Studio at Children’s Hospitals and Clinics of Minnesota. That act of kindness would prove to be the first of many for this amazing and generous young girl.

“I like to be nice,” Alannah said.

Through treatment, which has subsequently stripped Alannah’s head bald, prevented her from riding a bike because of low blood counts and kept her from enjoying first grade while she spends extended periods hospitalized, Alannah is thinking of others first.

“She is just beyond thoughtful. The word ‘thoughtful’ doesn’t even cover it,” said her mom, Angela Peterson.

A mother’s persistence

Alannah’s diagnosis didn’t come easily, or quickly.

At the end of the school year, she came home one day complaining about leg pain, Peterson said. Her eyes were ashen underneath. Instead of playing outdoors on the trampoline or riding her bike, she was inside using the family’s gaming system.

“It was like she never slept. She was always tired,” Peterson said. “This was not my child.”

Alannah dared The Dude from the Star Studio to bungee jump at the Minnesota State Fair. He accepted the challenge.

So began Peterson’s quest for answers. Alannah saw three different providers who had different diagnoses. None were cancer.

The first treated Alannah for a bladder infection. The second said she had anemia and recommended supplements and to return in six weeks to be re-tested.

Peterson wasn’t convinced. She took Alannah to a third provider and asked her – mom to mom – to figure out what was wrong. A series of blood tests indicated Alannah’s blood counts “were out of whack,” Peterson said.

They were told to go to Children’s – more than two hours away from their Wisconsin home – stat. After a series of tests, Peterson got the answer she needed but no mother wants for her daughter. She had cancer.

“Knowing is so much better than having questions,” Peterson said.

Alannah has retained her sense of humor through it all.

While Vicki Schaefers, Alannah’s nurse practitioner, talked with Peterson about the need for a blood transfusion, Alannah quipped, “You do know I am highly allergic to platelets!”

She has “intelligence that belies her age,” Schaefers said.

Acts of kindness

In the weeks since learning she has cancer, a community where many hadn’t heard the word neuroblastoma has rallied around Alannah, Peterson said.

On Sept. 22 – the day after Alannah’s seventh birthday – three casinos in her county raised approximately $98,000 to help pay for medical bills, a car for Peterson because she doesn’t have one, and a trip for Alannah’s family, Peterson said.

Approximately $20,000 will go to a county program for holiday gifts for children, Peterson said. Alannah insisted.

Alannah Gillis Photo: Shari Fleming

“Since her diagnosis, she has received more things than she could have imagined, but it has not changed her attitude toward others. She thinks of them first and foremost,” Schaefers said. “She is all about giving back, and this is only the beginning. She is an inspiration to all of us, and we will talk about her for years to come!”

A few days after the benefit, good news was in store for Alannah.

She returned to Children’s for a bone marrow biopsy and more chemo. During her stay, she got her biopsy results. Fifteen percent of Alannah’s cells were cancerous, down from 100 percent when she was diagnosed, Peterson said.

“The best news yet,” Peterson said.

Hours within getting the news, Alannah sat in her hospital bed awaiting more medicine. Her face was painted in shades of pink, purple, green and gold to resemble her favorite animal – a cat.

The warm, lovable, funny little girl got serious for a moment.

“I wish I knew why this happened,” she said.

No one knows, Peterson answered.

“It’s one thing when it’s happening to an adult who’s lived a long life; it’s another when it’s happening to a child who’s just beginning their life,” Peterson said.

That’s why they’ve agreed to participate in research that might help other kids and create better outcomes, Peterson said.

It’s yet another act of kindness.

“She has the biggest heart of any kid and adult I know,” Peterson said.

Childhood cancer Twitter chat with Children’s

Sunday, September 30th, 2012

Join Children’s Hospitals and Clinics of Minnesota for a Twitter chat on childhood cancer on Monday, Oct. 1, at 3 p.m. CST.

We’ll talk about:

  • Childhood cancers: How does cancer impact kids differently? What is the latest in research?
  • Children’s has a unique care philosophy for treating its pediatric cancer patients. What is it and how does it impact the patient and family experience?
  • What is Children’s doing to advance cancer research?

There are a few ways you can participate:

  • On Twitter, follow the hashtag #childrenschat
  • You can also follow the chat via the live stream below, which will activate at 3 p.m. Monday.

You can submit questions in advance by:

  • Using  the hashtag #childrenschat on Twitter
  • Email your questions/comments to brady.gervais@childrensmn.org
  • Entering your questions/comments in the box below when the chat starts at 3 p.m. Monday

Chat leaders include:

Dr. Kris Ann Schultz

Dr. Joanna Perkins

#childrenschat: The work continues after Childhood Cancer Awareness Month

Monday, September 24th, 2012

September is National Childhood Cancer Awareness Month. Childhood cancer affects nearly one in 10,000 kids each year, and nearly 13,000 children under the age of 21 are diagnosed each year in the United States. While cancer is still the leading cause of death in children between infants and age 15, survival rates have increased significantly over the past few decades – up from 58 percent in the 1970s to nearly 80 percent in recent years.

While we’re glad there’s a month dedicated to raising awareness around childhood cancer, our work at Children’s Hospitals and Clinics of Minnesota doesn’t stop on Sept. 30. We continue working toward early detection, creating the best outcomes for our patients and advancing research.

On Monday, Oct. 1, we invite you to join Dr. Kris Ann Schultz and Dr. Joanna Perkins from our Cancer and Blood Disorders Clinic during #childrenschat to discuss what we’re doing to advance childhood cancer research.

Follow the hashtag #childrenschat on Twitter from 3 p.m. to 4 p.m. CST on Twitter. If you’re unable to participate or follow the chat, we’ll share a transcript of the chat on Tuesday, Oct. 2, right here on the Kids’ Health Blog. We can still take your questions, too. You can submit questions in advance by Tweeting them to @ChildrensMN with the #childrenschat hashtag or sending them to brady.gervais@childrensMN.org.

#childrenschat leaders:

Dr. Kris Ann Schultz

 

 

 

 

Dr. Joanna Perkins

 

 

 

 

Topics:

• Childhood cancers: How does cancer impact kids differently? What is the latest in research?
• Children’s has a unique care philosophy for treating its pediatric cancer patients. What is it and how does it impact the patient and family experience?
• What is Children’s doing to advance cancer research?

We hope you will join us on Oct. 1. Read more about Childhood Cancer Awareness Month here.

Recognizing National Childhood Cancer Awareness Month

Tuesday, September 4th, 2012

September is National Childhood Cancer Awareness Month, and no one is more aware of childhood cancer than the families affected by it. If your family should be affected by a cancer diagnosis, you can find some comfort in knowing that the best care available is here at Children’s Hospitals and Clinics of Minnesota. That’s because we have the largest pediatric cancer and blood disorders program in the Upper Midwest.

Childhood cancer affects nearly one in 10,000 kids each year, and nearly 13,000 children under the age of 21 are diagnosed each year in the United States. The most common childhood cancers are leukemias (blood cancers) and brain or nervous system tumors.

While cancer is still the leading cause of death in children between infants and age 15, survival rates have increased significantly over the past few decades – up from 58 percent in the 1970s to nearly 80 percent in recent years.

Children’s takes a unique approach by focusing not only on the patient, but the whole family. We look at the entire picture – the clinical care, emotional well-being, sibling support and more – because we believe that better journeys lead to better outcomes.

There are even more reasons why Children’s is the best place for childhood cancer and blood disorder treatment. Here are just a few:

Children’s treats the most kids – in fact, we care for more than 55 percent of children diagnosed with cancer in Minnesota and more than 60 percent of Minnesota children and teens with blood disorders each year, says Dr. Susan Sencer.

Our outcomes are among the best in the nation. Children’s ranks in the top 10 programs in the U.S. in both medical and surgical cancer outcomes according to the Pediatric Health Information Systems (PHIS) database. Our program delivers some of the highest survival rates among leading U.S. children’s hospitals treating patients with cancer and blood disorders.

We believe no child should suffer needless pain. It’s for that reason why we’re known for our aggressive management of pain and side effects. Our nationally recognized Pain and Palliative Care Program is one of the largest and longest running in the nation and is led by our world-renowned pediatric pain management specialist.

Our patients have access to the most advanced treatments. Our state-of-the-art technologies – including special high-tech MRI capabilities that help doctors map tumors with precision – help yield remarkable outcomes. Our participation in cancer research –nearly 90 percent of our patients take part in clinical trials – place us in the top 5 percent of Children’s Oncology Group institutions for number of patients enrolled in clinical trials.

And, our physicians communicate and consult with colleagues from around the country, ensuring that every child receives the care they need, even if not at Children’s.

Our goal always is no matter what the condition, whether cancer or a chronic blood disorder, that we make that journey for the family and the child as positive as possible, given the rather hard circumstances of the disease itself. We believe, better journeys, better outcomes.

Throughout September, we’ll recognize in Childhood Cancer Awareness Month several different ways. Follow us here and on Facebook for updates throughout the month.

Learn more about Children’s Cancer and Blood Disorders program.

Mom finds comfort in cancer research team after rare diagnosis

Wednesday, August 22nd, 2012

This is a guest post by Kim Sondergard, whose son Tony was diagnosed with cancer when he was a few months old. The Sondergard family recently attended the 2012 PPB Family Meeting at Camp Courage.

My son Tony’s entry into this world was a bit bumpy.

He was born with a fever and pneumothorax (air pockets) in both lungs. Doctors and nurses tended to him for four days in the special care nursery. When he was fever-free and able to keep his body temperature within a normal range on his own, my husband and I were able to take our baby boy home. For four months, Tony was healthy.

He developed a cough and a fever, so we took Tony to his pediatrician. A chest X-ray showed what his pediatrician thought was a cyst. It was thought to be a congenital cyst and could be removed through surgery. Tony was admitted to Children’s Hospitals and Clinics of Minnesota, where he had surgery. From his nurses, to his pulmonary team, to the surgeons, to his anesthesia team – everyone rocked!

During our follow-up appointment with the surgeon two weeks later, we learned that the cyst that was removed was abnormal. Our baby had cancer. It was a rare form of childhood lung cancer called pleuropulmonary blastoma, or PPB. I didn’t know how to react.

Tony

The surgeon made an appointment for us to meet with Dr. Yoav Messinger, an oncologist who specializes in this type of cancer and is among the personnel at the International Pleuropulmonary Blastoma Registry. The PPB Registry is a collection of physicians, scientists and data analysts from many institutions, including Children’s, who have been working together for 20 years to evaluate PPB cancer cases.

Dr. Messinger gave us a deeper understanding of Tony’s cancer, and he explained the treatment options. Unfortunately, there wasn’t significant research on treatment options because this cancer was so rare. At the time of our meeting with Dr. Messinger, we also were introduced to Gretchen Williams and Dr. Jack Priest – also part of the PPB Registry.

Tony’s dad and I, as well as our relatives, provided the PPB Registry with DNA samples for a genetic study. They have found in many cases children with PPB carry the DICER1 gene. However, no one in his family, including Tony, carries this gene.

Tony

Dr. Messinger, the Medical Director of the PPB Registry, knows genetic testing needs to continue. “If we can determine in advance which children are at risk for PPB, we will do our best to try and diagnose PPB when it’s in the earliest, most curable stage.”

Two months after Tony’s diagnosis, a CT scan indicated another spot on his right lung. We decided at that time we’d proceed with chemotherapy. Dr. Messinger and Dr. Priest also recommended the spot be removed. Ultimately, we learned it was scar tissue – not cancer.

For an entire year, Tony underwent weekly chemo treatments. He also had CT scans every three months. None showed recurrence.

This past May, Tony celebrated his third year of being cancer free. Next month, he turns 5. He’s happy, active and healthy – all a parent wants for her child.

I would not have gotten through Tony’s diagnosis without the staff at Children’s and the PPB Registry. They were there step by step.

I believe in and support the continued research of the PPB Registry, so they can determine PPB’s cause and how to cure it. Not all kids diagnosed with PPB are as lucky as Tony.

Racing for kids who can’t

Thursday, August 16th, 2012

Gunnar Nelson is one of Mitch's All-Stars

On Saturday, 1,200 kids ages 7 to 17 will test their athleticism and race for kids who can’t at the MiracleKids Triathlon at Lake Ann in Chanhassen, Minn.

It was just two weeks ago that friends and family of 9-year-old Gunnar Nelson, an oncology patient at Children’s Hospitals and Clinics of Minnesota, toed the same line at Lake Nokomis in an effort to raise money for families of cancer patients. The races, two of the largest kids triathlons in the world, are organized by the Miracles of Mitch Foundation (MOMF), and Gunnar is one of “Mitch’s All-Stars.”

MOMF was formed by Steve and Becky Chepokas in memory of their son Mitch, and grew from a “pinky swear” between Mitch and his dad to continue helping kids going through cancer treatment. Mitch was 9 when he lost his battle with cancer.  MOMF provides financial and quality-of-life support to hundreds of families of children being treated for cancer in Minnesota.

Gunnar was diagnosed with Acute Lymphoblastic Leukemia in March 2011. His diagnosis came after he woke up with intense hip pain, developed persistent fevers and experienced general achiness that worsened, said his mom, Kelly Nelson.

His brother, 11-year-old Ryley, and his cousin competed in the Lake Nokomis event and raised money in his honor, Nelson said.

“Seeing how ambitious some of the kids were to complete the event and raise large amounts of money shows me kids are really doing amazing things to help other kids,” Nelson said.

That’s what the MiracleKids Triathlon and the MOMF organization are all about. And it inspires us. We at Children’s are proud to be the annual medical partner for the Lake Nokomis event.

”The MiracleKids Triathlons, ‘kids racing for kids who can’t’, not only support children going through cancer treatment, but also promote healthy lifestyle choices for all children in the battle against obesity – a top priority of Children’s,” said Dr. Joanna Perkins, a physician in Children’s Cancer and Blood Disorders Clinic.

Since its beginning in 2004, the MOMF has served hundreds of children with cancer and their families, Perkins said.  Their financial grant enables families to make house payments, utility payments, and other expenses, when parents are unable to work due to their child’s illness. They also sponsor many quality-of-life programs, including our annual Mitch’s All-Star Camp.  Children’s partnership with MOMF is an integral piece of helping our kids with cancer and their families along their journey.

Gunnar is currently in the maintenance phase of cancer treatment, Nelson said. He’ll continue treatment through September 2013. He takes chemo nightly.

Of her family, she said, “We go through a lot, but there’s always someone who’s been through even more.”

Gunnar has been a champion from the start, she said. “We call him a warrior,” she said.

Thanks to MOMF, warriors like Gunnar and their siblings get to attend Mitch’s All-Star Camp at Camp Courage in Maple Lake, Minn. During the camp, medical professionals from Children’s provide medical care and lead educational programming for the kids.

“I am proud to be part of Children’s and because of Children’s connection with the Miracles of Mitch Foundation, our lives have been brightened in this dark journey,” Nelson said.

Family Advocacy Day: A Q&A with the Johnstons

Wednesday, August 1st, 2012

John, Nancy, Mike and Emma Johnston recently traveled to Washington, D.C., for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings children’s hospitals patients and their families to tell their stories to lawmakers on Capitol Hill. In 2011, Mike, a Children’s patient, was diagnosed with a cancerous Germinoma tumor.

Upon his family’s return from a whirlwind tour of our nation’s capital, John answered a few questions about his family’s experience participating in Family Advocacy Day.

Mike, Emma, John and Nancy met Sen. Al Franken during Family Advocacy Day.

Q: Why did you share your story on Capitol Hill?

A: We shared our story because it was important for our legislators to put a face with a budget line item.  Our family does not want any other child to suffer waiting to receive care. We as a nation can’t afford to balance our budget on the backs of children.

Q: Do you think your story caught lawmakers’ attention?

A: Our story was very compelling. We had to wait for Mike to see a specialist for several months before we were ultimately told to go to Children’s.  Every legislator we spoke with agreed that this was unacceptable.  It is important for them to see the human impact of budget changes or cuts.

Q: What kind of reception did you get from the Minnesota delegation?

A: The Minnesota delegation was wonderful.  The four specific legislators we met with were; Reps. Betty McCollum and Eric Paulsen and Sens. Al Franken and Amy Klobuchar.  They were all up on the issues and understood our dilemma as parents.  They all agreed that this is an extremely important issue, and they vowed to keep up the fight.  The staffers we met also gave us ample time to share our story.  Rep. Paulsen commented on the trading card Mike gave him, so it was very important to leave something behind with our lawmakers.

Q: In addition to taking in the incredible sights of Washington, D.C., did you take anything away from your experience?

A: For our family, it was amazing to see how our government actually works.  It is very inspiring to know that a single family can make a difference in public policy. We’re a family that gives back to our community and have already offered our services at the state level.  We must stand up for children since they are our future. We know all too well the importance of excellent, timely care.  With any cuts to these programs, lives can be at risk.  We met so many wonderful people at Family Advocacy Day and would strongly urge others to do the same.  Our lives have been forever changed in a very positive way because of the role we were able to play.

John blogged before his family traveled to Washington, D.C. To read that post, click here

The Johnston family goes to Washington

Tuesday, July 17th, 2012

This is a guest post by John Johnston, dad to patient Mike Johnston, who was diagnosed with a tumor in 2011. His family will be in Washington, D.C., next week for Family Advocacy Day. In its eighth year, the Children’s Hospital Association 2012 Family Advocacy Day brings patients from children’s hospitals and their families to tell their stories to lawmakers on Captiol Hill.

The Johnstons

On April 18, 2011, we took our 13-year-old son Mike to Children’s in St Paul. That day, our family began receiving treatment from Children’s. It turned out that Mike had a cancerous Germinoma tumor that was blocking the flow of cerebral spinal fluid. The fluid was building up in his skull, putting pressure on his brain and causing him to have tremors and headaches. As we began Mike’s cancer journey, it became obvious to our family that Children’s not only treated the patient, but they treated the entire family. Every staff member who came into our room introduced themselves to all of us, including 7-year-old Emma. We felt secure with the staff since they all made time for us and made us feel like we were their only patients at the moment.

Throughout Mike’s treatment, several important events were planned. The first was the American Cancer Society’s Relay for Life in White Bear Lake, Minn. Mike was one of the featured speakers. The oncology team scheduled chemotherapy and other appointments to make this special event possible for Mike and our family. The second major event for Mike that summer was his junior high school trip to Washington, D.C. This was an opportunity he couldn’t pass up since the teacher in charge was Mike’s favorite teacher and helped Mike get passionate about history. Mike enjoyed the monuments and museums in our nation’s capital and was able to take it all in despite his low blood counts.

Throughout our family’s journey with Children’s, we all felt blessed to have this institution charged with our son’s care. We felt so proud to have Children’s in our life that our family made a commitment to give back. Mike is now a member of the Youth Advisory Council, and my wife and I participate in the Families as Partners program. This all led to the upcoming opportunity for our family to travel to Washington, D.C., to advocate on behalf of Children’s. We’re very excited for this chance to give back. We even accepted this opportunity knowing that we would travel on Emma’s ninth birthday. We can hardly wait to see the sites as a family and meet many wonderful people who’ve also been touched by Children’s.

See you in Washington!

Our cancer and blood disorders program

Friday, December 9th, 2011

When a child is diagnosed with cancer or a blood disease, it impacts the entire family. At Children’s Hospitals and Clinics of Minnesota, we not only treat the child, we care for the whole family. It’s this unique treatment philosophy — combined with world-class facilities, clinical expertise, leading technologies and remarkable outcomes — that makes Children’s the best place for pediatric cancer and blood disorder treatment.