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

Cancer advice from parents of children diagnosed with Wilms’ Tumor.

  1. Partial nephrectomy (nephron-sparing surgery) its an option that needs to be explored, the surgeon will try to save some normal kidney tissue, if possible. The surgeon may remove the kidney containing the most tumor with a radical nephrectomy. In the other kidney, the surgeon may do a partial nephrectomy, removing just the tumor and a margin of normal kidney around it. Another option might be partial nephrectomies on both kidneys. Because Wilms tumors are rare, few doctors outside of those in children’s cancer centers have much experience in treating them.
  2. In the United States, surgery is the first treatment for most Wilms tumors. In Europe, doctors often prefer to give a short course of chemotherapy before the surgery. There seems to be no difference in the results from these 2 approaches.
  3. Top Surgeons in the field include:
    1. Peter F. Ehrlich, M.D., MSc from University of Michigan: http://surgery.med.umich.edu/pediatric/healthProviders/ehrlich.shtml
    2. For Nephron-sparing surgery Andrew M. Davidoff, MD from St. Judes Children’s Research hospital: https://www.stjude.org/directory/d/andrew-davidoff.html
    3. Daniel von Allmen MD from Cincinnati children ’s, Andrea A. Hayes-Jordan, MD from MD Anderson Cancer Center. https://www.cincinnatichildrens.org/bio/v/daniel-vonallmen
  4. Medical Oncologist Marcio H. Malogolowkin, M.D from UC David Health System: http://ucdmc.ucdavis.edu/publish/providerbio/search/21829
  5. Radiologist Thomas E. Merchant, DO, Ph.D. from St. Judes Children´s Research hospital: https://www.stjude.org/directory/m/thomas-merchant.html

 

Tips:

  • If your child is diagnosed with this condition, do not prod or push on the child’s belly area. Use care during bathing and handling to avoid injury to the tumor site.
  • Make a list of all medications. Write down questions to ask your doctor.
  • Call a healthcare provider immediately if there are symptoms of tract infection (fever, pain during urination.
  • Use non-steroidal anti-inflammatory drugs only under medical supervision. Since they can cause vasoconstriction (contraction) of the renal arteries and decrees the blood supply to the kidneys.
  • “ The internet is a great place to find this information. But you do need to be careful. If you’re not, you could fall down the rabbit hole, the following link after link and get completely overwhelmed.” http://www.searchmydiagnosis.com/research-cancer/research-wilms-tumor/

Intra-arterial chemotherapy for Retinoblastoma.

What is intra-arterial chemotherapy? 

Intra-arterial chemotherapy refers to a novel treatment that consists in delivering the chemo directly into the artery feeding the eye, because of this doctors can use much smaller doses of chemo drugs (less than 10% of the doses used for systemic chemo). Therefore, there are significantly fewer side effects from the chemo.

Did you know? 

  • A thin catheter, no thicker than a strand of angel hair pasta,  is inserted into an artery in the thigh. The procedure is extremely delicate.
  • Intra-arterial chemotherapy can be used as the first treatment or for recurrent retinoblastoma.
  •  It is indicated in unilateral retinoblastoma (one eye involved) when children are 9 months or older and if there are no signs of cancer outside the eye (moderate or advanced disease). For minor retinoblastoma, less invasive treatments can be used.
  • Younger babies receive whole-body chemotherapy instead of intra-arterial chemotherapy because they have very small blood vessels.

 

History.

  • In 1945 The treatment of intraocular retinoblastoma was first performed by Algernon B. Reese.
  • During 1968 Other investigators including Kiribuchi in Japan experimented with local delivery of drug to the eye.
  • In 2004 the idea was revisited by Yamane & Kaneko from Japan. https://www.ncbi.nlm.nih.gov/pubmed/15108036
  • In 2006 the technique was adopted and revolutionized in the United States.

 

The Japanese technique of ‘selective ophthalmic artery infusion’ was further developed into ‘direct intra-arterial (ophthalmic artery) infusion’ under the pioneering work of Abramson and Gobin in New York, NY at Memorial Sloan-Kettering Cancer Center and New York-Presbyterian Hospital/Weill Cornell Medical Center under an institutional review board approved-protocol that began in May 2006. Abramson’s initial report on the technique was groundbreaking as it was the first truly selective delivery by direct catheterization of the ophthalmic artery which allows rapidness, efficiency, and safety in young children with intraocular Retinoblastoma. 

 

Experts:

  • David H. Abramson M,D Ophthalmic Oncologist, Chief, Ophthalmic Oncology Service, Department of Surgery at Memorial Sloan Kettering . Expert and pioneer in the field of intr-arterial Chemotherapy.
  • Y. Pierre Gobin M,D director of interventional neuroradiology at the Weill Cornell Brain and Spine Center. Expert and pioneer in the field of intr-arterial Chemotherapy.

 

Videos:

If you want to know more specific details such as: what is IAC, how it is done, classification and many other aspects, here is a useful video(9.34 minutes) of one of the most renowned groups that treat Retinoblastoma (Wills eye hospital).

 

 

References: