Proton therapy.

There is a significant difference between standard (x-ray) radiation treatment and proton therapy.

What is Proton Therapy? Proton therapy is a type of radiation treatment that uses protons to treat cancer. It’s also called proton beam therapy.

Why is Proton Therapy better? Proton therapy is often the preferred option for treating solid tumors in children because protons can be controlled precisely so there is less radiation of normal tissues, helping prevent serious complications and lessening the chance of secondary tumors.

The advantage of proton therapy (also called proton beam therapy) is that the physician can control where the proton releases the bulk of its cancer-fighting energy.

 

How does proton therapy work?

 

Alexander Barnes was the first kid from the UK to be treated with protons. Check out his story:

 

The team at MD Anderson Proton Therapy Center pioneered pencil beam proton therapy, also called scanning beam, and intensity modulated proton therapy (IMPT) these advanced forms of proton therapy combine precision and effectiveness, offering unmatched ability to treat a patient’s tumor and minimizing effect on a patient’s quality of life – during and after treatment.

MD Anderson Proton Therapy Center experts discuss the benefits of proton therapy:

 

To read more about proton therapy click here.

 

References: 

Natalie’s Story.

“Everyday brings a chance for you to draw in a breath, kick off your shoes and Dance”, said Oprah Winfrey. For the little dancer in Natalie Gorsegner, this quote describes her battle with cancer all too well. At two and half years old, Natalie was diagnosed with acute lymphoblastic leukemia (ALL).

Here is Natalie:

 

The magazine Parents shared a special video called “What is really like to have a child with cancer”  where Natalie´s mom narrated their heart touching story. Reminding us how important is to keep a positive and peaceful attitude in order to help our children to cope better with the situation. When a kid is diagnosed with cancer it affects all the family, it is very important to stay together and to look for the bright side. Stories from other families are here to let you know you are not alone.

“I waited for the test results and then like a scene out of a movie, I saw a small team of people approaching, one with tears in her eyes. An oncologist told me the news. Your daughter has leukemia”, said Andrea Verdone Gorsegner, Natalie’s Mother.

Living through cancer can be quite an ugly, intense experience and along came Natalie’s difficult moments too, like having the port in her chest, her tubie and also her belly protruding to a point which made her uncomfortable wearing shirts. “Whenever Natalie is struggling later in life, I want her to look back and remember her experiences so she can get through anything”, said Andrea.

It is difficult for a 3 year old child like Natalie to understand the severity of the disease but soon she also took up the treatment to be a part of her daily routine. Cancer made Natalie a superhero for so many of us as she learnt to take things in her stride.

“ Having a child with cancer just changes you forever. You look at the simple moments and appreciate them more. I want all children, including Natalie, to be able to climb trees until they can climb them with their own kids”, said Natalie’s mother Andrea.

Do you feel identify with some of these feelings or thoughts?

Natalie is cancer free now, and the family is still committed to raising money to fund cancer research:

 

We recommend you to look out for support groups and other parents with experience, they can help you manage difficult situations, my child´s cancer is here to support you, please do not hesitate to contact us.   

To read more about it click here.  

 

 

Childhood Cancer in a nutshell.

 

Cancer.net is an excellent source of information. They have a youtube channel that provides oncologist-approved information to help patients and families.

Dr. Michael Link, specialized in pediatric hematology-oncology explains to us what is childhood cancer in a nutshell.

 

 

Progress in the treatment of childhood cancer is one of the great success stories of modern medicine. In the last three or four decades, we have made enormous progress in treating almost all of the different childhood cancers. How we’ve made this progress is through clinical trials. – Dr. Michael Link

 

We highly recommend this platform if you are looking for trustful and useful information.

Do you have information to share with other parents?  contact us. 

 

 

A potential new target for treatment of diffuse intrinsic pontine glioma (DIPG).

There are some childhood cancers that have experienced few treatment advances in the past decades. The lack of effective treatment options can be a nightmare for patients and their families. The slow pace of translation for promising research from the laboratory to the clinic has created a “pre-clinical gap” meaning that basic scientific research is not reaching children in the clinic. There are some researchers that are seeking to be the bridge and accelerate the pace of the research and the initiation of clinical trials. The Children’s Cancer Therapy Development Institute is a unique independent non-profit organization focused on the ‘preclinical gap’ in childhood cancer research. Their mission is to bridge scientific discovery and the initiation of clinical trials.

One of the cancers that require urgently more research and treatment options is Diffuse intrinsic pontine glioma (DIPG), a rare and brutal tumor of the midbrain. Decades of clinical trials have shown that DIPG tumors are insensitive to traditional chemotherapy.

Dr. Noah Berlow, is a post-doctoral fellow at The Children’s Cancer Therapy Development Institute (cc-TDI, cc-TDI.org) that identified the IL13RA2 gene as a specific target for DIPG cells which is absent in normal brain cells. This discovery opens new avenues to attempt and treat DIPG. This study was recently published in PLOS ONE.

This project took its inspiration and it was done thanks to the support from The Lyla Nsouli Foundation For Children’s Brain Cancer Research and With Purpose, both projects founded by childhood cancer parents.

A strong reminder that as parents we CAN make a difference and find a cure for cancer if we join our forces.

To read more about it click here.

Raining in my heart.

Raining in my heart is a documentary released the last November of 2017 by real stories, of three children who enrolled in cancer research clinical trials in Britain. With all the conventional treatment exhausted, these kids are offered to try immunotherapy. Sophie Ryan-Palmar (12 years old), whose cancer came back four times, Fabian Bates (11 years old) diagnosed with Leukemia and Chloe (3 years old) who’s Neuroblastoma has spread throughout her body.

This documentary follows these children and their families for 2 years, giving them space to talk about their feelings and emotions as well as the decision-making process during this battle.

This documentary honors these heroic children who are helping discover new cancer treatments and helps by raising awareness on this subject and offering hope to other cancer patients.

You can watch the full documentary here:

 

Chloe’s parents created a diary and they are sharing a lot of their battle on her Facebook page, to read more about her story click here.  

 

To learn more about clinical trials or if you have any question do not hesitate to contact us, we are here to help you.

 

 

Obesity and Childhood Cancer.

Jennifer a pediatric nurse dedicated to raising awareness for all types of cancer published a small note in The oncology nursing news about the increased risk of developing obesity-related cancer in overweight or obese adults who are childhood cancer survivors.

She explains that higher amounts of body fat cause chronic inflammation in the body, this inflammation can damage our DNA increasing the risk of developing obesity-related cancer. At highest risk of obesity are childhood cancer survivors of ALL (Acute Lymphoblastic Leukemia) or those who received radiation, more specifically the brain, and total body irradiation (TBI).

Survivors who get cranial radiation and also receive glucocorticoids have an increased risk for obesity.

Raising awareness of the importance of proper nutrition and exercise should begin as early as possible to avoid or at least control the obesity as a survivor.

Here are some tips that can help your child eat well, taken from the guide for parents of children with cancer from the National Cancer Institute:

  • Talk with a registered dietitian.
  • Learn what types of foods and drinks are best for your child.
  • Some children may be advised to get extra protein and calories.
  • Encourage small, frequent meals.
  • Check before giving vitamins or other supplements.
  • Take special care with food to lower the risk of infection.
  • There are some foods that can help reduce side effects.
  • Call about changes.
  • Ask about activities that may be recommended to your child.

For more information about the relationship between obesity and childhood cancer click on this link.

 

Use your intuition.

The story of Rachael Au Hoon, a resident of Waikapu, Hawaii it’s a reminder of how parents agonize when a child is diagnosed with cancer.

Her 3-year-old daughter Kahalau, was diagnosed with stage 3 neuroblastoma after a period of becoming weak, not being able to walk in a straight line, random episodes of fever and the feeling that something was not ok.

Kahalau´s dad shared in an interview published last March 21 of 2018, at The Maui News the following advice, lesson of accompanying his daughter undergo several sessions of chemotherapy and surgery, which we believe it can help other parents to find some bravery.

“They get you by the tail because you want to save your daughter’s life so you’ll say yes to everything,” he said. “The best thing to do is educate yourself with that specific cancer they have and do research on every medicine. Be that advocate parent and use your intuition. It will save your child’s life.

Kahalau´s parents created a facebook page where they share about Kahalu´s cancer journey. If you have a similar story we encourage you to visit their page to find support, knowledge, and compassion.

For more information about the story follow this link.

My child´s cancer is a project that is committed to helping the families with kids with cancer to do research and walk this path with you, for more information of what we can do for you please write to us.

Some inspiration.

Sam a child diagnosed with Diffuse Intrinsic Pontine Glioma, he was not eligible for clinical trials because he was only 2 years old. Sam lost the battle against cancer, but his mom, Erin Benson, never gave up to make him happy. Inspired by the support of friends and family she founded With Purpose a youth-led movement dedicated to creating a world where kids with cancer have access to safe and effective treatment.

Recently she wrote a blog post “I’m the Executive Director of a Nonprofit… and a Waitress, the invisible cost of cancer”, where she shares a very delicate and not so openly talk aspect about going through childhood cancer: the financial aspect.

Everyday life struggle, effort, pain, and love, continue after we face a cancer battle of our relatives and loved ones and still we have to pay the bills.

We recommend you to read her blog post about courage, about standing up, about coping and resiliency, about being patient with yourself.

Whenever you feel desperate by not knowing what to do, follow her advice:

  • “What you do is hold your people close and love them.”

  • “What you do is find gratitude for what you have, knowing that nothing is permanent.”

  • “What you do is the best you can.”

 

We hope this can bring some inspiration to you.

More about Neuroendocrine Tumors…

Many patients diagnosed with a neuroendocrine tumor claimed that this video helped them to learn and understand deeply about their condition. For this reason, we want to share with you this lecture about Neuroendocrine Tumors (NETs) from the Royal Free London NHS Foundation Trust given by Dr. Christos Toumpanakis and Jorge Garcia-Hernandez.

Eventhoug is not specifically directed to childhood cancer, since Neuroendocrine Tumors are rare in children and young adults, we believe that this information can really help parents of kids diagnosed with NETs to understand in a very detailed level about this tumors.

 

Let us know what you think!

About Experimental Therapies.

In this video, researchers from the Children’s Hospital of Philadelphia talk about experimental therapy for pediatric cancer and why it is important to consider these types of therapies at an early stage of the treatment.

If your kid was diagnosed with a rare or aggressive type of cancer it is important to consider more than one treatment option, do not hesitate to ask your doctor about clinical trials and research.

Communication is the key.

We can help you find the right direction, contact us for further information.

For more information about the original note visit this link: http://www.chop.edu/video/experimental-therapy-pediatric-cancer-childrens-hospital-philadelphia