Blog

Nutrition

The Grind on Flaxseeds

“According to the WHO, approximately one-third of the deaths caused by cancer are due to bad eating habits and lack of physical activity. By improving eating habits and increasing physical activity, more than 30% of the cancers diagnosed could be avoided. Thus, with the increased risk, a proper nutrition intervention is necessar. Nutrition plays a fundamental role in cancer, as it can reduce complications that happen during treatment and can contribute to the patient’s well-being.”-National Institutes of Health

With that said, a simple yet nutritious superfood to add to your diet are flaxseeds! These small seeds are loaded with essential nutrients, have tons of health benefits and can be easily incorporated with a variety of drinks and meals.

Nutrients:

  • lignans (a class of phytoestrogens which act as antioxidants)
  • alpha-linolenic acid, an omega-3 fatty acid (essential for energy, brain function, cell maintenance, heart function and anti-inflammatory. ALA is an essential fatty acid, which means that your body cannot naturally produce it, so you need to obtain it from the food you eat.)
  • thiamine ( vitamin B1, essential for normal metabolism and nerve function)
  • magnesium (important for bone health, calcium absorption, heart function, metabolism)
  • phosphorus (important for bone health)
  • selenium (assists with cognitive function, helps lower oxidative stress in the body, which reduces inflammation and enhances immunity)
  • copper (It helps maintain healthy bones, blood vessels, nerves, and immune function, and it contributes to iron absorption)
  • folate (support brain health, important during pregnancy to prevent neural tube defects, needed to make red and white blood cells in the bone marrow)
  • iron (a mineral vital to the proper function of hemoglobin, protein needed to transport oxygen in the blood)
  • potassium (regulates fluid balance, muscle contractions and nerve signals)
  • zinc (plays a role in our immune function and wound healing)
  • protein (helps build and repair tissues)

Benefits of ground flaxseeds:

  • Help lower the risk of different types of cancer, type 2 diabetes, heart disease
  • Reduce oxidative stress with its antioxidant properties (high in polyphenol antioxidants)
  • Aid in gut health (support the growth of probiotics in the gut and may also help eliminate yeast and candida in the body.)
  • Aid in preventing and relieving constipation (one of the major side effects endured during cancer treatment, make sure to take with plenty of water!)
  • Good for colon detoxification
  • Help reduce overall total cholesterol and bad cholesterols: triglycerides and LDL (low density lipoprotein) cholesterol
  • Help balance hormones (bind to estrogen in the bowel and help eliminate it which might help reduce the risk of breast cancer and aid in mood regulation)
  • Help regulate blood sugar levels
  • Promote healthy hair: nourish the hair follicles making them stronger, shinier, help improve elasticity of hair and aid in hair growth.

There are studies that also show that flaxseeds have an effect on breast cancer, according to the National Institutes of Health “α-linolenic acids have been shown to be able to suppress growth, size, and proliferation of cancer cells and also to promote breast cancer cell death. Additionally, some clinical trials showed that flaxseed can have an important role in decreasing breast cancer risk, mainly in postmenopausal women.”

Lignans are considered natural “phytoestrogens,” or plant nutrients that work somewhat similarly to the hormone estrogen. Phytoestrogens in flaxseed can alter estrogen metabolism, causing either an increase or decrease in estrogen activity depending on someone’s hormonal status (in other words, flax has both estrogenic and antiestrogenic properties). For example, in postmenopausal women, lignans can cause the body to produce less active forms of estrogen, which is tied to increased protection against tumor growth.” -Dr. Axe

The best benefits of flaxseeds has been found to come from ground flaxseeds over the consumption of whole flax seeds (which are not easily absorbed by the body and you will likely pass them whole in your stool) or flax oil (which lacks fiber and protein).

The freshest flaxseeds will be buying whole flaxseeds and grinding them right before use. You can use a mortar and pestle , coffee grinder or a blender. You can also buy flaxseeds pre-ground.

Health tips:

  • The fiber in the flaxseed may also lower the body’s ability to absorb medications that are taken by mouth, so avoid taking it at the same time (take at least 1 hour apart).
  • Freshly ground flaxseeds should be used shortly after grinding or stored away in the refrigerator immediately. It is best to add to cold beverages like smoothies or sprinkle on top of food like yogurt, fruit, açaí or salads.
  • Flax seeds have a mild nutty taste, so if there is a bitter taste then your flaxseeds have gone bad and should be tossed out.

Ground flaxseeds are best stored in an airtight container kept in the refrigerator. When I buy my already ground flaxseeds I transfer them from their bag into a large glass mason jar and cover them with a bamboo lid (avoid using aluminum and plastic) and store it in the refrigerator. It typically lasts up to a year when refrigerated but make sure to check expiration date on package and always look out for that rancid smell.

Here are a couple of ways that I have been able to incorporate flaxseeds into my sons diet (mind you he is a very picky eater and has not noticed the ground flaxseeds or their taste used in these methods):

  • Adding to homemade pancake mix! Pancakes have also been one of the easiest ways I have been able to pack in nutrients and calories to help my son battle his weight loss during cancer treatment. Our favorite are making Golden Milk Pancakes:
    1. Start out with your favorite pancake mix (I love Birch Benders!)
    2. Add a tsp of golden milk mix (I use Zen’s Tea House Golden Milk mix)
    3. Add milk of choice or alternative
    4. Add a tsp of ground flaxseeds with lignans (great way to add fiber and omega 3)
    5. Add an egg (farm fresh eggs are always the best, if not look for organic eggs with the highest omega 3 and DHA) or you can substitute for banana
    6. Cook in butter (my favorite is Kerry Gold or Organic Valley) in a cast iron skillet (as a way to increase iron levels, unless contraindicated)
    7. There are so many other things you can add to the mix, some of my favorite are: coconut, dark chocolate chips, walnuts and blueberries
    8. Some tips that helped me add calories to my son’s pancakes were adding: a tsp of almond butter or any nut butter, dash of heavy cream or whipped cream
  • Adding it to homemade baked cookies
  • Adding it to ground meat when making meatballs, meatloaf or burgers

Special Precautions & Warnings:

Consuming flaxseeds, especially when first introducing them to your diet, can cause bloating, gas, abdominal pain, constipation, diarrhea and/or nausea. It is recommended not to consume more than 4-5 tablespoons daily. Because it is considering a bulk-forming natural laxative it can block the intestines if you are not taking in enough fluids, so make sure to have an adequate water intake.

Pregnancy and breast-feeding: Taking flaxseed by mouth during pregnancy is POSSIBLY UNSAFE. Flaxseed can act like the hormone estrogen. Some healthcare providers worry that this might harm the pregnancy, although to date there is no reliable clinical evidence about the effects of flaxseed on pregnancy outcomes. There is not enough reliable information about the safety of taking flaxseed if you are breast feeding. Stay on the safe side and avoid use.

Bleeding disorders: Flaxseed might slow clotting. This raises the concern that it could increase the risk of bleeding in people with bleeding disorders. Don’t use it, if you have a bleeding disorder. (Take precaution when platelets are low during chemotherapy)

Diabetes: There is some evidence that flaxseed can lower blood sugar levels and might increase the blood sugar-lowering effects of some medicines used for diabetes. There is a concern that blood sugar could drop too low. If you have diabetes and use flaxseed, monitor your blood sugar levels closely.

Gastrointestinal (GI) obstruction: People with a bowel obstruction, a narrowed esophagus (the tube between the throat and the stomach), or an inflamed (swollen) intestine should avoid flaxseed. The high fiber content of flaxseed might make the obstruction worse.

Hormone-sensitive cancers or conditions: Because flaxseed might act somewhat like the hormone estrogen, there is some concern that flaxseed might make hormone-sensitive conditions worse. Some of these conditions include breast, uterine, and ovarian cancer; endometriosis; and uterine fibroids. However, some early laboratory and animal research suggests that flaxseed might actually oppose estrogen and might be protective against hormone-dependent cancer. Still, until more is known, avoid excessive use of flaxseed if you have a hormone-sensitive condition.(Consult with oncologist)

High blood pressure (hypertension): Flaxseeds might lower diastolic blood pressure. Theoretically, taking flaxseeds might cause blood pressure to become too low in individuals with high blood pressure who are taking blood pressure-lowering medication or individuals who already have low blood pressure.L

*Any application of the recommendations in this website is at the reader’s discretion.Information is provided for informational  purposes only and is not a substitute for professional medical advice. These products are not intended to diagnose, treat, cure or prevent any disease.Please consult with physician prior to use.  

CBD

Life Element’s CBD Products

Prior to my son being diagnosed with cancer, I did not really know what CBD, short for Cannabidiol, was. I had heard of it but just figured that it was some form of marijuana.

So what is CBD? Unlike THC, CBD is inert and does not produce any psychoactive effects. With CBD you are able to reap the benefits of cannabis without the actual high. Leaf Science does a great job in explaining what CBD is and how it has an effect on our endocannabinoid system here.

During his initial course of chemotherapy, he started to suffer from bilateral lower extremity neuropathy. He would have intermittent episodes of pain in his legs that unfortunately later resulted in foot drop. Because of his Vincristine chemotherapy drug he started to have difficulty in lifting the top part of his foot, in addition to having the muscles in this legs tighten up.

In researching alternatives to pharmaceuticals for providing him with pain relief from neuropathy, rather than loading him up with more medications that ultimately just have more side effects and put more strain on the body, we started looking into CBD oil and CBD products. While looking for CBD products it is important to look for full spectrum, hemp derived CBD. You want to make sure the CBD is pure, not synthetic or mixed with any other chemicals that would defy its benefit for use.

I came across Life Elements products and it was love at first try! Their CBD & Honey Ache + Pain Relief stick has been such a blessing to Anthony with his neuropathy. We have used it to rub all along the bottom of his feet and legs which also makes for a great massage. His dad and I then started using it on ourselves for our own back pain issues and it is officially a staple in our households. I love that you can apply it directly from the stick without having to use an applicator or dipping fingers in a cream, which makes it great for on-the-go. You’ll feel a slight warming and cooling sensation upon application to help relieve pain, while treating your skin to the benefits of a blend of beeswax, honey, propolis, royal jelly and pollen.

Not only do Life Element’s products work so well but the founders, Martha and Curt, are truly amazing. They have followed my son’s journey and have been an exceptional resource to have. Their level of customer service has far exceeded our expectation and they have gone above and beyond to connect on a personal level. We are so grateful they have been a part of my son’s healing process and helped him thrive through cancer.

We have never given Anthony any pain medication during the course of his cancer treatment. We have been blessed that he has achieved full pain relief and relaxation through the CBD products we have used, including Life Element’s CBD bliss ball bath bombs, warm magnesium salt baths, massage and essential oils.

I love that their CBD bliss bath bombs contain no toxic or harsh chemicals, preservatives, aluminum, color dyes, foaming agents or synthetic fragrances. They are naturally scented with flower extracts and essential oils.

The Everyday Skin Repair stick has also been amazing on Anthony’s skin when it is irritated or dry. A single application of this and his skin has been fully repaired by the next day. Goes on so smooth and is very nourishing to the skin.

Life Elements has a wide array of CBD products including tinctures, salves, body scrubs, lip balms and bath bombs! We have tried them all and they are truly great! If you are interested in trying any of their products, you can use code “AJ15” at checkout to receive 15% off of your order! We are sure you will like them just as much as we do!

*Any application of the recommendations in this website is at the reader’s discretion.Information is provided for informational  purposes only and is not a substitute for professional medical advice. These products are not intended to diagnose, treat, cure or prevent any disease.Please consult with physician prior to use.

Healthier Home

Splish Splash, Safe and Healthy Bubble Bath

One of the things my son has enjoyed most while undergoing his cancer treatment and even know are baths. It helps him relax and makes for the perfect aid in promoting a restful sleep. Even now that he is done with his treatment, at the age of 11, he still likes to take baths. What he enjoys most though are bubble baths! I mean who doesn’t, right? Regardless of what age you are, bubble baths are totally enjoyable and relaxing!

My favorite bubble bath to use for my son Anthony, is from California Baby®. Shortly after my son was diagnosed with cancer I started researching safe, non-toxic products to use. That is when I came across California Baby® and their product line is now my absolute favorite! So much so that I am now a California Baby® Mombassador. With that said please rest assured that I will never recommend or promote any products that I have never tried or do not personally like. I have tried so many products in search of what would be best for my son and can with all honestly say their product line is my favorite.

Our skin is our largest organ and has a transdermal effect, so what we expose our skin to is just as important as what we put in it. You might not stop to think that what you or your child are using on your skin, especially soaking in, can have a negative impact on your health. California Baby® was created by a mother in search of all natural safe products to use for her first born. Their line of bubble baths are made with plant based ingredients and use essential oils for their scents. Absolutely no harsh toxic chemicals or synthetic fragrances. They also have an ingredient safety score rating of 1 from the Environmental Working Group. You can check out a list of their ingredient standards here.

The U.S. Food and Drug Administration (FDA) requires that a warning label be put on all ‘foaming detergent bath products’ used for children that states “Caution –Use only as directed. Excessive use or prolonged exposure may cause irritation to skin and urinary tract. Discontinue use if rash, redness, or itching occurs. Consult your physician if irritation persists. Keep out of reach of children.” This is because there are bubble baths that are made with harsh and toxic chemicals. Check out what toxic chemicals to avoid in kids bubble bath products here.

So what can possibly make a bubble bath more fun, for kids at least ? A bubble wand of course! Not only will kids have a great time taking their bath while having fun blowing bubbles but it is also very therapeutic and actually has health benefits for any age!

Because blowing bubbles requires deep breathing and also incorporates pursed lipped breathing (exhaling through puckered lips) it increases pressure on the airways to keep them open longer and is a great method to reduce anxiety, promote relaxation and relieve stress.

With little ones, blowing bubbles are also a great way of developing visual tracking skills as babies and infants move their head and follow the bubbles with their eyes. Once they are at the age to start learning to blow bubbles it will help them strengthen the muscles of the jaw and around the mouth as well as work on fine motor skills while they hold the wand. Who thought a bubble bath could be so beneficial!

They have a wide variety of bubble baths to choose from, varying in different essential oil scents, including one that is unscented for extra sensitive skin. I would say that their CALMING™ bubble bath is great before bedtime. Among these bubble baths, is also their I Love You™ bubble bath which portion of proceeds from this line of their products is donated to the CA Breast Cancer Research Program.

You can check out their full line of products at www.californiababy.com. You can also find some of their products at Target, natural food stores and select local stores like Whole Foods or online at Amazon.

If you would like to try out California Baby products, click here to take a short quiz and claim a free prize! Hope you love their products just as much as we do!

Cancer Survivor Stories, Events

Gabby Galarneau for St. Baldrick’s Foundation

In January, Gabby was announced as one of St. Baldrick’s 2019 Ambassadors representing over 300,000 other children who are diagnosed with cancer each year worldwide. Five ambassadors are chosen every year because one in five kids diagnosed in the U.S. will not survive. This is the unfortunate reality of cancer and the devastating truth that a lot of families are having to succumb to.

Gabby was in the eighth grade when her life completely changed and she was diagnosed with osteosarcoma back in November of 2017. Her treatment included limb salvage surgery on her left leg to remove a tumor, her knee and six inches of her femur with a total of 18 rounds of intensive chemotherapy. Even though her treatment was completed July 2018 and she is in remission, she still endures a lot of the residual side effects. Gabby is having to undergo continuous physical therapy to learn to walk again and dealing with other unfortunate and permanent late effects, like hearing loss secondary to the chemotherapy she received. She now has to wear hearing aids as a result of it. Even though the treatment portion it self is over, the journey continues. Gabby continues to have scans done every 3 months as her type of cancer has a 50% chance of recurrence over the next 5 years. 

Gabby has spent many days at the hospital and the only thing about it that she actually enjoyed were the therapy dogs. All throughout her inpatient hospital days while she would receive her chemo and even now during her physical therapy sessions, she always requests the volunteer hospital dogs to be at her side. Gabby got to design her own pair of socks to raise funds for St. Baldricks and her inspiration came from these therapy dogs that have helped her throughout her journey with cancer. All funds raised will be donated to the St. Baldrick’s Foundation, the largest private funder for childhood cancer research funds, and used to find better treatment options, funding childhood cancer research and to give the lives of these childhood cancer survivors a better future.


We all have the ability to make a difference and help save a life. Our children are our future, but it starts with us to help make a change and ensure they are able to live a long, righteous life. If you would like to show Gabby your support, as well as so many other children who have been diagnosed with cancer, please purchase a pair of socks and remind them no one walks alone! https://www.resilience.gives/products/gabby-for-st-baldricks?variant

Non-Toxic Beauty Products

Cleaner and Safer Nails

One of the things that I stopped doing after my son, Anthony, was diagnosed with cancer was using nail polish on my nails. Not only did I bite them off that first night that we sat in the ED with him but since then I’ve been concerned about all the chemicals found in nail polish, as well as the risk of bacteria. Hand hygiene goes beyond just making sure to keep your hands clean, it actually extends to the nail polish we use and our nails themselves. Let’s face it, the most common way that we get sick is by the things we touch with our hands which we then transfer to our mouth, or other mucus membranes like our eyes.

Hand hygiene is of greater importance when dealing with someone who is immunocompromised, like cancer. These individuals do not have the level of immune response to fight off the simplest of germs and are therefore at higher risk for infection.

Tips to reduce the risk of bacteria related to nails:

  • Remove any chipped nail polish immediately (it can harbor bacteria in the chipped polish).
  • Avoid having nail polish worn for more than four days, it has been shown to foster the presence of microorganisms which resist removal by handwashing.
  • No artificial nails (they have a higher chance of harboring bacteria)
  • Keep natural nail tips less than ¼ inch long (long nails harbor more bacteria under nail).
  • When washing hands, making sure to clean the underside of the nails (with a scrub brush would be ideal to remove as much dirt)
  • Avoid biting or chewing on nails (our mouth is the dirtiest place on our body, believe it or not, and can leave germs on the nails or transfer germs from our nails to our mouth.
  • Make sure any nail grooming tools are clean prior to use or sterilized if sharing with others. (always a good idea to even bring your own tools to a nail salon)
  • Avoid cutting cuticles, as they act as barriers to prevent infection.
  • Never rip or bite a hangnail. Instead, clip it with a clean, sanitized nail trimmer (risk for paronychia infection)

Tips to reduce risk of exposure to toxins and increased risk for cancer:

  • Gel manicures pose an additional health risk associated with the UV radiation from the lamp used (tip: apply sunscreen on hands prior to use)
  • Avoid using toxic nail polishes and hand hygiene products (make sure to read labels and purchase products with full ingredient list disclosed)

Early on in my son’s cancer journey I started researching ways to live healthier lives, reduce our exposure to toxins and start trying out non-toxic products. This is when I came to find that there are non-toxic nail polishes out on the market. This meant that I could continue to paint my nails without having to compromise my son’s health, or my own.

I have tried several non-toxic nail polish brands at this point and I will say that the one that overall lasts the longest, has the best application, ease of removal and a wide array of over 120 colors to choose from is Côte.

If you live in the Los Angeles or New York City area they also have two nail salons where you can get a manicure and/or pedicure utilizing all clean and safe beauty products, including a choice of their entire line of non-toxic nail polishes. They even go above and beyond to offer a personalized treatment in their Los Angeles location called “personal shop box” where you get to keep all of the tools that were used on you and only you, your own bottle of Côte’s base & top treatment and couple of a polish colors.

The most important part of why I choose Côte’s nail polishes and nail care treatment products, is because they are:

  • formaldehyde free (known carcinogen and skin allergen, often used as a preservative)
  • dibutyl phthalate (DBP) free (affect the reproductive system and linked to cancer)
  • toluene free (linked to impaired human reproduction and development, impaired breathing, being harmful to the nervous system and nausea)
  • camphor free (can cause allergic reactions in large doses, cause irritation, dizziness, nausea, and headaches)
  • formaldehyde resin free (often used as a hardener and in large doses can be a skin allergen)
  • triphenyl phosphate (TPHP) free (causes changes in hormone regulation, metabolism, and reproductive systems)
  • xylene free (known allergen and a possible carcinogen)
  • ethyl tosylamide/epoxy resin free (has antibiotic properties which raises concern for antibiotic resistance)
  • paraben free (estrogen-mimicking effects which may trigger hormonal problems)
  • gluten free (allergy concern for those with gluten intolerance)
One of my favorite shades of red, is Côte’s No. 28

You can purchase Côte’s products online on their website or through any of these online or retail locations.


Events

Pediatric Brain Tumor Foundation: Meet the Experts Event

On Saturday, March 23rd, I had the opportunity to attend the “Meet the Experts” event hosted by the Pediatric Brain Tumor Foundation. This event is put together by the California Chapter at least once a year to give parents with a child diagnosed with a brain tumor the chance to hear brain tumor experts, which may include pediatric neurosurgeons, neuropsychologists, nurse care managers, and special education consultants to address the topic and offer valuable information to assist with navigating this journey. Amongst these presenters are also a panel of veteran parents that are available for an open parent discussion. Who better to want to ask questions to than a parent who has already walked this journey?

It was a very informative event with the first half of the meeting presented by Dr. Josh Neman, PhD. on understanding the role of the brain’s micro-environment in pediatric brain tumors. Dr. Neman is an Assistant Professor of Neurosurgery and member of the Norris Comprehensive Cancer Center at the Keck School of Medicine of USC. Dr. Neman received his doctoral degree at UCLA David Geffen School of Medicine in neurobiology. He then went on to complete his cancer biology fellowship at the City of Hope’s Beckman Research Institute. He has published multiple studies and his current research at USC include pediatric brain tumors, with emphasis on Medulloblastoma.

Dr. Neman gave a comprehensive overview of what is cancer, the biology of cancer, how cancer is studied in the lab and the current research on Medulloblastoma (the most common type of malignant pediatric brain tumor). Which happens to be the brain tumor that our son was diagnosed with, so I am grateful to have been able to hear him speak and gather such vital information that I now share with you all as my personal take away from the event.

In learning what cancer is, a normal stem cell at any point of the cell’s path can mutate and go bad turning it into a cancer stem cell. Carcinogensis, “the process by which normal cells are transformed into cancer cells”, can occur from inhereted mutations in the genes affecting DNA repair, cell growth and cell death, as well as environmental agents that damage DNA such as exposure to chemicals, radiation and viruses. Inherited mutations in the genes, we have no control over however, environmental factors and other modifiable causes we can prevent or actively work towards reducing their risks.

Cancer is treated utilizing various methods, depending on the type of cancer, its location and patient’s age, as well as other factors. The most common treatments for treatable brain tumors, because unfortunately not all are operable or treatable, are surgery, chemotherapy, radiation, stem cell transplant and/or if all else fails immunotherapy. Cancer treatment can fail because of resistant cancer cells that remain dormant and can survive even in the harshest of environments (i.e. despite not having sugar to feed off of, it will continue to multiply but at a slower rate). Because these resistant cells are programmed to survive, you end up with a recurrent tumor. Unfortunately cancer treatment does not always kills every cancer cell. What I learned from Dr. Neman is that tumor cells have the ability to trick the body’s immune function to making it think that they are “good guys” so the body does not kill them. They have the ability to mask themselves and sometimes illicit the immune system to help them grow.

When cancer cells seep into the blood vessels, they now have the ability to travel to other organs and metastasize. They likely tend to spread due to nutrients being present in which allow them to multiply and grow. It was interesting to learn that when tumor cells metastasis to another locations, for example a tumor that started with its original origin in the breast and is now spread to the brain, it is still those original tumor cells from the breast that have traveled to the brain. It is not that the other organ affected, in this example the brain, has developed cancer on its own. So this person would have breast cancer that has mets to the brain, not breast cancer and brain cancer. According to Dr. Neman, it is unsure at exactly what point in time the metastasis actually happens. Tumor cells have the risk of spreading during treatment because tumor cells will naturally want to leave a “hostile environment” during which they are being attacked with chemotherapy, which will then cause them to spread to another location in the body.

When biopsies are taken from a tumor, they are grown in a petri dish in order to be able to study them and formulate a proper diagnosis. In order to grow the cancer cells they are fed sugar (yes, you read that right! cancer cells thrive off of sugar!), proteins, oxygen and carbon dioxide. They are then placed in an incubator under a sterile environment and allowed to grow. It was quite interesting to see a video presentation of cancer cells under a microscope dividing at a much faster rate when being fed high fructose corn syrup. Another reminder of how adequate nutrition, with a diet low in sugar intake, is an integral part of being healthy and one of the most important aspects of nothing only surviving but thriving through cancer. Most importantly within our own personal journey with our son, it is one of the key components of keeping him in remission and reducing the risk of any possible dormant cancer cells from being fed and reactivated.

Of course in the midst of the presentation, as parents we were all eager to learn of other possible factors that contribute to causes for cancer. Although it is not surprising, it serves as a reminder for all, that when it comes to cancer only about 5% of the causes are related to actual genetic predisposition. Certain subsets of people are more prone to cancer. But for the other 95% it has been ascertained, that the cause of cancer in children is not fully known. Doctors are researching factors such as stress, viruses, lack of sleep, too much sugar intake, exposure to toxins and chemicals, radiation, lack of oxygen or even an environment with too much oxygen can cause an imbalance in relatively dormant cancer cells causing them to become more active. All it may take is a threat or imbalance to a cell’s environment to cause this kind of activation to occur.

In listening to Dr. Neman speak, especially with targeted focus on Medulloblastoma, it was interesting to learn that the neurotransmitter, gaba, has been found to cause these type of tumors to grow and spread within the brain. About 80% of brain cells use gaba in order to communicate and unfortunately from my gathering, these cancer brain cells have also learned to grab a hold of this neurotransmitter, break it up and use it for their own energy.

It is relieving to learn that when looking at statistics, pediatric brain tumors in which are able to be treated have an average 5 year survival rate of 75%. Of course, this percentage varies depending on the exact type of brain tumor, the age of the child and the type of treatments they had to succumb to, amongst other factors. Younger children have a harder time enduring treatment and tend to have more long term effects due to their developing brains. It is for this reason that usually radiation is avoided if possible, in children under the age of 5 years old. It is devastating however, to know that central nervous system (brain and spinal cord) tumors are still the leading cause of cancer related morbidity in children.

Brain tumors, in relation to other cancers, are harder to treat due to the blood-brain barrier that is present where the brain tries to protect itself. In addition to that, there are three layers to the brain which make treatment such as chemotherapy, difficult to reach certain areas of the brain. Dr. Neman mentioned with new research, scientists are finding that there are back doors to get to the brain, such as via our nares which allow for inhalation of drugs and creating a direct pathway to the brain. This bypasses the blood system, which makes for a faster and better route at targeting the brain specifically. Because of this research is currently looking at delivering chemotherapy intranasally, which would be a huge advancement in treatment with perhaps less systemic side effects that the body in general would have to endure.

Another newer advancement, which is still being researched, is immunotherapy, which uses the body’s own immune system and turns it on itself. One of these targeted immunotherapies is Car T-Cell Therapy, where blood is removed from the patient to obtain the T-cells (the fighter cells in our immune system) programmed to bind to cancer cells and then infused back into the patient to go kill them. In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas.”-National Institute of Health.  

Dr. Neman shared there is a resource website for families to navigate, for not just cancer but any type of disease, called www.ClinicalTrials.gov. This is a database of privately and publicly funded clinical studies conducted around the world, which are not FDA approved yet and still within the research phases. On this website you are able to search the condition, check the status of the study, the eligibility criteria, the results if the study has been completed and who is was funded by.

The second half of the presentation was conducted by one of the neuro-oncology nurse practitioners and social workers from Children’s Hospital of Los Angeles on navigating survivorship. An important take away that I gathered in which is important for parents and patients alike to know, is that plan for survivorship starts the day of diagnosis. There are several transitions a child with cancer will go through: diagnosis, treatment, treatment completion, expectant observation (this is the period between end of treatment and transition over to survivorship clinic in which a patient will be monitored with MRIs to ensure brain tumor has not returned and followed closely by other ancillary specialty areas such as endocrinology, dietician, audiologist, neuropsychologist and ophthalmology to name a few) and then finally transition over to survivorship clinic once the oncology team feels like the patient is in the clear and the risk of the tumor returning is minimal. This time frame varies for every patient and will usually occur around the time the oncologist has started to monitor the patient only once a year. Once a patient enters the survivorship clinic they meet with an integrative team consisting of a physician, nurse practitioner and social worker. A detailed and individualized care plan will be established and revised as needed at every meeting identifying potential future problems and monitoring plans.

During the presentation they spoke on factors influencing long-term side effects which include:

  • age (the younger the patient, the higher the risk due to developing brain)
  • hydrocephalus (if not resolved can require a permanent shunt)
  • tumor location
  • surgical resection
  • chemotherapy agents
  • radiation (very damaging long term)
    • focal (directed at the site of the tumor)
    • cranial-spinal (more damaging as it gives radiation to entire brain and spine)
  • posterior fossa syndrome (mutism, speech problems which pose a higher risk of cognitive issues long term)
  • difficulty walking (neuropathy, foot drop related to chemotherapy)

Treatment related long-term side effects:

  • eyes (vision problems)
  • ears (hearing loss secondary to platinum based chemotherapy agents. most of the loss occurs during treatment and then stabilizes after treatment, although there is still a risk of decline after and must protect hearing. Normal age related hearing loss may occur at earlier ages in this population of patients; hearing loss that may have normally started to occur at age 70 might begin as early as age 40-50 years old.
  • teeth (cavities, missing adult teeth)
  • internal organs
  • skin
  • musculoskeletal (curvature in spine)
  • endocrine system (abnormal thyroid function, fertility problems, declined growth)
  • physical appearance
  • secondary malignancies (these are usually related to radiation)
  • cognitive (memory problems: hard to acquire new information post radiation, processing speed of information delayed, delayed visual processing, impaired focus and attention span and difficulty executing functions)

It was rather frightening to learn that there is an annual incidence of 90-150 new brain tumor cases each year seen at Children’s Hospital of Los Angeles alone. Overall looking at nationwide statistics, there are about 15,000 cases of childhood cancer diagnosed each year. Yet looking at these numbers a lot of people still like to think that childhood cancer is rare. Well, let me tell you from personal experience, now being in the inner group of that cancer population is truly is not rare. This is why it is important that we donate to pediatric cancer research and take active interest in learning how to mitigate cancer risks, then making those modifiable changes in our lives. Our children are our future and we as parents, caregivers and a community as a whole are responsible for educating ourselves and doing our part within our capacity and resources we have to ensure they not only survive but thrive in the process.

Surviving cancer, is not just about staying alive. There are a lot of things that you actual “survive” both the child and the parents or family in general, which include:

  • medical trauma (everything from the moment of diagnosis, treatment, side effects and late effects)
  • vicarious trauma (the trauma endured from the parents or outsiders caring for child)
  • grief and loss (even though a child survives cancer, they are still never truly the same person they were prior to diagnosis, so there is a grieving part that comes from missing who that person used to be and potentially who they could have become in the future)
  • strain and interpersonally relationships (everyone copes with these situations differently and not everyone has the same ability to adapt to the situation)
  • missing out (there is a sense of grief and sadness in everything the child misses out on as a result of treatment, side effects, etc)
  • financial stress (the financial means to put someone through cancer treatment, even with insurance, is very high and it is costly long term with all the lifetime care and follow-up that is still needed even after end of treatment)

A lot of the times we focus on the things that we can see, as those are things that we are constantly reminded of and/or have to handle at the moment. Often we forget about what also occurs on the inside, with the emotional and psychological late effects that are seen in survivors. The presenters touched on aspects that while you are going through the motions of cancer treatment, you may not even had time to think about. The aftermath of cancer, can leave children (even those almost transitioning into adulthood) with anxiety, scanxiety (the fear that comes with every MRI follow-up of possible recurrence of the tumor), depression, PTSD (post traumatic stress disorder), survivors guilt (they may feel guilty that they survived cancer versus their fellow cancer warrior friends that they may have met), grief (loss of peers, loss of not having a “normal life”), low self esteem, relationship challenges and so much more.

An important part of survivorship that they touched on is learning how to cope: learning how to acknowledge the diagnosis at hand, accepting the situation, being a part of support groups (no one else will understand how you feel more than someone who has already walked in your journey, trust me I know that first hand and highly recommend you reach out to other cancer parents), making sure to engage in self care with adequate rest, sleep, nutrition, exercise and taking part in things that help you cope or promote relaxation (one thing I have learned in the process that will hold true to any parent or caregiver on this journey is that you cannot take care of someone else, unless you take care of yourself first. You will wear yourself thin; know when to take breaks and ask for help). They noted that it is very important to keep notes, ask questions, read journals and blogs, attend seminars/workshops and I cannot tell you how much this is true and will help you along the journey. Staying organized will also be as important.

Out of all bad things, some good things do come. One of the topics of presentation was on post traumatic growth: “it is a positive change experienced as a result of the struggle with a major life crisis or a traumatic event.” Once you hear the words “your child has cancer” it will change your life forever, obviously in a devastating way but there is also positive things that will come as a result of everything your child and you as parents have endured. You will meet so many people along the way that will be a huge support system to you, your bond and relationship with others will usually strengthen as a result of experiencing first hand how fragile life is, you will gain a greater appreciate for life in general as you more than anyone else know how life can change in an instance, it will deepen or possibly change your spiritual belief, you will learn to face adversity and learn to look for the silver linings in situations. Not only will your child be a survivor, but you as well.

There will be many factors that will determine survivorship but some of the key things they emphasized are making sure to stay in survivorship care (this team will ensure your child has the best outcome), maintain regular annual appointment with primary care physician, make sure to maintain insurance coverage to ensure there is no lapse in care, as the child survivor it is encouraged that they obtain the highest level of education possible as this will open doors for a better future and help their cognitive development, find fulling employment, exercise, eat right (decreased sugar intake), get enough rest and sleep, learn how to cope and manage stress and engage in social support (no one fights alone and you truly cannot get through life alone!). This advice notated here can be applied towards any individual, not just a child or adult with cancer. There are so many resources available out there for children with cancer, please take the time to research them or ask others, especially the social worker who is a vital resource tool.

Lastly as part of the presentation was the panel of parents and a brain tumor cancer survivor who spoke on their journeys through cancer and provided some insight to the journey after end of treatment, as well as looking back on what their treatment was like and what advice they give others now. One of the comments made by one of that fathers, resonates so much with me in that he said you have to truly learn to live in the moment. He mentioned that it wasn’t until much later in life after his son’s cancer treatment was over (his son is a 26 year brain tumor surviver) that he started to grieve the loss of the son he had prior to diagnosis and mourn the person that his son could have become, to later realize that the son he has here today is just as much of a great person despite all the challenges he has had to face. The brain tumor cancer survivor when asked what she would state is something her parents have done that has annoyed her or she wishes they would do and she said to try to solve her problems. As parents, especially those now with children who have been diagnosed with cancer, it is in our innate nature to want to help our children as much as we can but this survivor made a good point that she wants to be able to just vent about life and figure it out on her own now that she is an adult. Again, this is something that can be applied to any parent-child relationship.

To conclude, everything noted within this blog is my own personal take away from the information gathered at the presentations and is in no way meant to serve as medical advice. I do highly encourage you to attend one of the “Meet the Experts” meetings in the future, if you are a parent/caregiver or even a brain tumor cancer patient/survivor. There was a lot of vital information presented and the ability to be able to ask questions from such experts, including other veteran parents and patients is invaluable. For more information on future events and resources, please visit their website at: http://www.curethekids.org

Medical Products

Essentials for On-The-Go

When you have a child with cancer, life is lived hour by hour. Anything can happen at any given moment, so you want to make sure you are as prepared as possible to handle the situation at hand and ensure the best outcome.

One of the things that I highly recommend is to stay organized at all times, beginning with having a bag (a backpack would be ideal to avoid the strain of shoulder or handbags) to carry essential items on-the-go.

  1. Medications: make sure you carry all medications with you at all times (including scheduled routine medications and PRN-those to be taken as needed). You never know if you will find yourself in a situation where you will require those medications or be far from home. Also, set a routine of checking when medications are starting to run low and need a refill. Make sure to always have at least 3-5 days worth of medications at all times. *If you are looking for a pain relief alternative, CBD has worked great for us! Life Element’s CBD Pain & Ache Relief Stick has been great to take on-the-go!
  2. Syringe: always a great idea to carry a syringe for oral liquid medication and one with a needle if your child has any medications that need to be delivered by injection. (recommend carrying two of each item needed in case one fails to work).
  3. Pill cutter and/or pill crusher: never resort to cutting medication with a knife or scissors. It can cause you to split them unevenly, resulting in two pieces with very different dosages, which can be dangerous. Also, it is okay to store the other half of the pill in its medication container but avoid wanting to split all of the tablets at once for convenience. That will help keep the drugs from deteriorating due to exposure to air. (There are some medications that should never be split or crushed, please consult with the pharmacist if you are not sure.)
  4. Emesis bag: You will want to make sure to have at least two of these on hand with you at all times! In addition to carrying some in your essentials bag, make sure to keep on in the car within reach of your child (backseat pocket) and at home in areas where your child frequents (especially next to their bed at night). As you are probably already aware, vomit will happen and at any given time! These will be your best friend to avoid additional cleaning and laundry. It is also the best way to discard the bodily fluids, since you can tie it in a secure knot and dispose. (Tip: rinse your child’s mouth after vomiting.)
  5. Thermometer: a fever can come on at any given time, so you will want to make sure to be able to check their temperature especially while on the road. Every hospital has a different protocol on how to handle fevers for pediatric oncology patients but the most common standard is fever of 101°F one time or 100.4°F taken on two occasions at least one hour apart, you will want to arrive at the Emergency Department within an hour (or Infusion Center during the day if that is your hospital’s guidelines) to have blood cultures drawn and started on antibiotics if needed. Recommend always having an extra set of batteries stored with the thermometer and additional disposable probe covers. (Tip: Do not give acetaminophen/Tylenol® for your child’s fever unless your oncologist/or the oncologist on-call directs you to.)
  6. Pulse-oximeter: this has been a vital tool for me personally as a nurse to be able to monitor my son’s heart rate and oxygen levels. Some medications and secondary conditions related to cancer treatment can cause changes in heart rate, which you will want to monitor outside of the hospital setting. For myself, the pulse-ox has come in handy often when monitoring if my son has been anemic or not feeling well and perhaps about to spike a fever to see if his heart rate is increasing. You will want to check with your child’s pediatrician what are considered to be normal parameters for your child.
  7. Ice pack/ Heat pack: disposable ones are great for on the go. Ice packs come in handy as a cooling measure when your child has a fever, to help reduce an inflammation or ease pain (use with caution to never place directly over the skin or leave on for longer than 15 minutes). Heat packs are useful for easing pain as well, just take extra precaution with use on area that has received radiation treatment or an area that is red, raw, tender, or swollen.
  8. Face masks: you will want to take extra infection control precautions during chemotherapy and/or stem cell treatment, especially during the times that your child is neutropenic. An abnormal ANC (absolute neutrophil count) is fewer than 1,500 (cells per mm3). The risk of getting a serious infection gets higher as the ANC gets lower, especially as it gets lower than 500. My favorite reusable face mask with a filter is the Vogmask. My favorite washable and reusable face mask is the Germ Freak mask made by Dena Tyson which you can find on Etsy.
  9. Hand sanitizer spray/ gel: you will want to make sure to have some on hand for when there is not a sink available; washing hands with soap and water will always be the better option. Avoid any with fragrance (Unless verified by the Environmental Working Group as safe), that contain triclosan or are labeled as “antimicrobial.”
  10. Hand sanitizing wipes: personally I like hand wipes better than sprays or gels because I feel it does a better job, is less messy and it is also useful for wiping down surfaces when there are not disinfecting wipes available.
  11. Body/baby wipes: our children’s skin becomes so sensitive after radiation and/or chemotherapy, you want to prevent irritating their skin more using just traditional toilet paper. This is also a more hygienic option.
  12. Facial tissues: these come in handy for several reasons and will be utilized often. Avoid using the body/baby wipes on face and mucus membranes (eyes, nose, mouth) as you do not want to run the risk of cross contaminating feces and causing an infection.
  13. Water bottle: staying hydrated will be of upmost importance throughout treatment. Recommend using a reusable, stainless steel and insulated bottle to keep water cold.
  14. Snacks: you never know how long you will be out on the road, at an appointment or being admitted to the hospital. Always best to keep snacks on hand that your child will like. I personally like these reusable snack bags.
  15. Wound care: because accidents can happen at any time and you want to be prepared, it is a good idea to have a small first aid kit or wound care kit put together. Some basic necessities are bandages (I personally love these non-toxic, natural PATCH strips) sterile gauze and a pair of gloves (which you will want to keep clean in a bag, gloves will also come in handy if you have to give an injection). If possible wash the wound right away with soap and water, pat dry with sterile gauze and cover with bandage.
  16. Mouth care: oral hygiene is very important in preventing infections. Carry a soft toothbrush, toothpaste and mouthwash (will come in handy after vomiting episodes). Lip balm is essential to keep lips moisturized.
  17. Lotion: with repeated hand washing your skin and your child’s is bound to start to get dry (theirs most especially due to their skin becoming sensitive and fragile during treatment). You will want to make sure to keep hands and skin in general moisturized to keep it from cracking which can allow for opportunistic infections. Sunscreen is also important!
  18. Port-a-cath necessities: dressing for EMLA cream (Tegaderm seems to be the most popular occlusive dressing used for this, which is latex free but ensure your child does not have skin sensitivity to it).
  19. Central-line necessities: central line dressing change kit (this should be something that is supplied to you)
  20. Disinfection caps: to protect the port connectors on port-a-cath and central lines from bloodstream infections
  21. Feeding tube necessities: extra feeding tube kit, syringe, drainage pads (for GT/JT), supplies to check for proper placement
  22. Anti-nausea essentials: peppermint essential oil, peppermint mints or hard candy, peppermint gum, ginger water in an insulated container or ginger chews are all great non-pharmaceutical ways to dealing it nausea.
  23. Medical records: you will want to have copies of vital medical records with you at all times, including a hospital pass which will come in handy when checking in to the Emergency Department (most oncology units will give patients a “hospital passport” indicating what the child’s diagnosis is, their medical record number, any known allergies, what type of port/central line they have and size of needle used to access port, as well as the most recent medications they have taken. (If this is something that is not given to you, you will want to create a sheet with this information to have on hand, ideally laminated). When a child is seen in the ED (even in your home hospital) they sometimes do not have access to all of the inpatient records or if you happen to have to go to a different hospital, you will want to be able to give the healthcare staff the most accurate background of your child’s treatment, etc. Staying organized throughout the entire treatment will be one of the most important tasks you will want to do! We are all human, so there is potential for error at any time.
  24. Clothes: you will want to have an extra set of clothes and a bag to put any soiled clothes, I like this waterproof reusable bag. A small hand towel to clean up body or messes will come in handy.
  25. Activities: because there might be a lot of downtime while waiting in between appointments or at the hospital, it is always good to have activities on hand (i.e. card games, reading books, coloring books/crayons, puzzles). Or if your child is school aged it would be wise to carry their homework with you.
  26. Charger: charger for cell phone and/or electronics, or extra battery pack in case there are no outlets available.
  27. Cash: always a good idea to have some cash and loose change on you for parking, vending machines and food (if admitted to the hospital, sometimes they have parent meal trays for a discounted price but accept cash only).

I have created a list of recommendations on Amazon for some of these essential items for you here.

You can download a copy of this page below