Events

Jessie Rees Foundation: Courageous Mama’s Luncheon

Today I had the honor of being in attendance of some of the strongest women I will ever meet. Although our stories are all different, our first chapter all started out with hearing the words “your child has cancer.” Words that will forever be imprinted into our hearts. We are part of a group that we never signed up for. Yet we are bonded in a way no one else can understand. We are a team and although this journey can sometimes be scary and lonely, no one fights alone.

7 years ago, one courageous mom lost her child to brain cancer. This courageous mom is Stacy Rees, mother to Jessie Rees for which the foundation is named after. This mom, the Rees family and Negu team put this first annual Courageous Mama’s Luncheon together so that other courageous moms can connect and be an additional source of encouragement to each other. This family lost their child and yet they fight so hard to encourage other families to Never Ever Give Up. I am still at a loss of words when I try to think of what they have endured and how amazing it is how they keep their daughter’s legacy alive by helping bring joy to other courageous kids and families.

Today we shared hugs, stories, laughs and many tears. We enjoyed a delicious brunch and if that wasn’t already enough, we were each gifted a special boost of love with this lovely Negu bag filled with thoughtful items for parents to use along the journey. 

So grateful to have been able to be a part of this amazing event and have been brought together with other courageous moms. Thank you Jessie Rees Foundation for all the love you showed us today and everyday for all that you do!

If your child has been diagnosed with cancer, I encourage you to join Team Negu. No one fights alone… we are a team, we are family!💙https://negu.org/

For those of you who are not familiar with the Jessie Rees Foundation, it was created in honor of Jessica Joy Rees, better known as “Jessie”.  She was a 12 year old girl who courageously fought two brain tumors (DIPG) from March 3, 2011 to January 5, 2012. During her courageous fight, she decided to focus on helping other kids fighting cancer that couldn’t leave the hospital. When Jessie learned that some kids never get to leave the hospital after their treatment she asked her parents “How Can We Help Them?” This desire led to the creation of her fun-filled JoyJars® and the Never Ever Give Up (aka: NEGU®) message.

Jessie personally sent over 3,000 JoyJars to kids during her fight.  Now over 250,00 JoyJars have been stuffed and sent to courageous kids nationwide and in 41 other countries thanks to events like this one, along with the many donors, supporters and volunteers. Her family along with many volunteers and donors keep her legacy alive and continue to encourage other kids and families while they battle childhood cancer.

You can watch the video about Jessie and how the Jessie Rees Foundation was all started here: https://youtu.be/MaK2czV4DkQ

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
Cancer Survivor Stories

Chloe’s Fight with Ewing Sarcoma

“My cancer was Ewing’s Sarcoma, a very rare bone cancer. My cancer was localized to my right humerus. In the summer of 2016, I had my first symptoms which consisted of small amount of pain and swelling to my humerus. Then the pains were not continuous but there was pain every month and the bump grew. On January 10, 2017, the pain came back and this time it was unbearable, I suffered terribly. My parents decided to take me to the Emergency Room and I had an x-ray of my arm and a blood test done. We spent the night in the hospital and were then transferred to another hospital for further examinations. I underwent a biopsy of my arm, I had a scan, and a MRI. All of this was done not even within a week. Five days later, I was told that I have cancer, an Ewings Sarcoma. I was only 13 years old! Another five days later, I had surgery to put an implantable chamber site, a gastrostomy and for the ovaries.”

“January 27, 2017 I received my first dose of chemotherapy. I did the Euro Ewing treatment. This treatment has 3 parts (if all goes well). The first part has 6 courses of chemotherapy, each course lasted 3 days. I had vincristine, ifosfamide, mesna, doxorubicinn and etoposide phosphate.
The second part was the operation, I had an arthrodesis. The surgeon put my fibula in place of my humerus. I do not have all my mobility and my arm is well deformed; I am considered about 20% handicap.The third part is a consolidation course, it includes 8 courses of chemotherapy, each course lasted 24 hours. I had vincristine, dactinomycin, cyclophosphamide and mesna.”

“I had a lot of side effects: I had nausea, tiredness, I had to use a wheelchair and I had more than 20 blood transfusions. …but I finished my treatment on January 4th 2018. I am now in remission !!!”

“During the treatment, I had only one thing in mind! It was to survive. Some things helped me during the treatment, I went to my grandparents’ house by the sea, the change of air is extremely good. My parents sent me massages every night. My mother was very present, I was with her all day and even at night. I did what made me happy, I watched a lot of horror movies, I ate everything I wanted at any time, it was really great! Especially do what makes you have the most fun in these difficult times, it’s really important.”

“I will give you some advice, I do not want you to make the same mistake as me. During the treatment, I did not want to see my friends, I did not want them to see me like that and now I regret not having wanted to have fun with them because after the treatment, I had problems socializing. Despite your change of appearance, do not worry about others, even if it’s very difficult, live your life even with the disease, show cancer and others that you are the strongest and fight!”

Chloé Duflos 🇫🇷

Cancer Survivor Stories

Grace Wethor: “You’re So Lucky”

“My name is Grace Wethor and I am a 17-year-old brain tumor survivor. Growing up I was a super active child. I got in trouble in school a lot, but mainly for things like choreographing dance numbers in the middle of math class or directing a film in the middle of English. No matter what it was, I always wanted to be creating something new. I was a figure skater and with the help of my team would soon become a world champion in the synchronized figure skating division. I was also a performer in the circus and traveled back and forth to Canada to train. After that, I explored acting, writing, poetry, film, and many more creative activities.”

“I believe our life is a circle. Our circle is made up of events and decisions that go both ways. An event can force you to make a decision and a decision can cause a string of events. We can’t always control the events that occur but the decisions to do the things we love is all up to us.”

“At age 13 I became tired, sick, and started losing passion for the things that I loved. I was taken to countless doctors that would say things such as she’s depressed, she’s a teenager, and worst of all, she’s making it up for attention.”

“One day my mom decided to take me to the ER to have me checked for Mono. It had been going around my school and I had some of the symptoms. With a test or two, they figured out I didn’t have mono but I had some weird blood markers. I was sent to the Children’s Hospital of Minneapolis Hematology department. It was there they told me I might have Leukemia.”

“Over the next couple of days, I went through extensive testing that thankfully showed I did not have Leukemia. Although this was good news, it sent us back to square one. They spent the next sixth months trying to figure out why I had all of these markers for leukemia but I didn’t actually have leukemia.”

“One day the doctors proposed an MRI of my spine and head. It was January 9th, 2015. I was in math class when I received the slip of paper that said my mom had arrived to pick me up. I got in the car and we drove to the hospital. We went through the procedure of the MRI and after I put on my P.E. clothes. I was headed off to gym class and we were doing the dance unit which of course this was my favorite. Unfortunately, I didn’t make it to gym class that day.”

“About 10 minutes into our drive back to school, we received a phone call. It was very quick and my mother didn’t speak at all. She turned around the car and we headed back to the hospital.”

“That day I was diagnosed with a Brain Stem Glioma, a tumor in the brain stem. Due to the location, it was considered inoperable and chemotherapy/radiation had a slim chance of working. These medial roadblocks meant I was given an 8% chance of survival for the upcoming 6 months.”

“That was the day my life and perspective of living changed. I started living every day to the fullest and pursuing every dream or goal I could think of no matter the outcome. I moved to Los Angeles and started acting and modeling full time. Quickly I found myself modeling in New York Fashion Week and acting on Nickelodeon. 4 years later, I am still fighting my tumor every day but it is completely stable. I truly believe it was because of this one event that I changed my way of living. Having something place a time limit on you makes you work harder. Dreams I never thought would come true started manifesting themselves. I now focus on helping other cancer survivors pursue their dreams through my book “You’re So Lucky” and my non-profit organization “We Can Beats This.””

Grace Wethor- Brain Cancer Survivor & Activist

Website: http://www.thegracewethor.com/home.html

TedTalk: The Day That My Life Changed Forever

Instagram: @gracewethor

Cancer Survivor Stories

Steven the Cancer Crusher

Steven before diagnosis

“I never thought my life would change the way it did. Never did I think it could happen to us, to my child. Hearing the words “your child has cancer” was the day I started mourning and haven’t stopped. I just learned to function like a machine for survival and mental health so to speak. Steven was suppose to be celebrating his 10th birthday on the same day he was to start the 4th grade, but instead he was in the specialty services oncology unit at Kaiser Permanente getting a bone marrow aspiration and spinal tap done along with blood tests.”

“One week prior to his diagnosis he was playing just fine and full of energy, being a wise guy and telling funny jokes. We went swimming that weekend and I noticed unusual bruising on him. We had just picked up his big brother Cris from the JROTC program in Carlsbad and celebrated by swimming and being together as a family. He had two bloody noses that weekend. “I asked him why do you have bruises? Is someone in summer school hitting you?” Being that we don’t use physical punishment for our kids as a form of discipline I knew something was wrong. I felt it, I knew it. Those bruises were not normal.”

“I took that following Monday off work and took him to get his blood drawn. I was scared the doctor would call CPS (child protective services) because of the bruises but she seemed to be very concerned in a different way. I didn’t hear from her that day after the blood work so I thought everything was fine. The next day I received a call asking to take him back to the lab to get more tests done and then he had to return again for an x-ray. My husband took him while I was at work.”

“At 3:30pm Tuesday, August 1st the doctor called and said I would be receiving a call from the Oncologist because his blood work showed his cells were rapidly dividing and his platelets were very low which explained the bruising. I screamed….I panicked… I was in denial and so angry. The oncologist called me a few minutes later and that’s when our journey in crushing cancer began. Steven was diagnosed with acute lymphoblastic leukemia and it was in 85% of his body but did not reach his cerebral spinal fluid which spared him from additional chemo treatments and radiation. Something to be so grateful for.”

“He had surgery and his first chemo treatments that Friday. Thus his chemo treatment began, however we didn’t know he would need to be in treatment for three and a half years. Steven went through four phases of intense chemotherapy treatment. He is on his fifth phase now which is projected to end November 28, of 2020 and 6 months later he will have surgery to remove his port-a-cath.”

“I’ve watched my son lose his hair and go through mental anguish because he is a lot older and very involved in his care. He even made the decisions on how to proceed with his sedation protocol because it’s what he felt was appropriate. Of course we have our input but we respect his wishes because he makes a good point when he says it’s his body and he trusts God. I wish my faith was as strong as his. Steven had to leave school and not engage in any contact sports and his interaction with the world was now limited. For him being so very social and involved in everything the community had to offer, this was devastating for him. This took its toll on our family. We felt alone and scared. Our community showed us the most immeasurable amount of support financially and emotionally and the support is still as strong as when he was first diagnosed to this day.”

“Steven reached remission after his first phase of induction! The best news was that his MRD (minimal residual disease) was a .006 ! We were so happy but devastated that he still had to continue with the worst to come of chemo treatments. I watched him lose weight, lose his hair, lose his humor and go into a dark place at times. He couldn’t eat and he just wanted to be normal. We spent so much time in the hospital that we decided to stop feeling sorry for ourselves and do what we could to help others because eventhough to be frank, our life sucked at the moment, we still were breathing while others took their last breath and didn’t wake up that morning. We started looking at all the wonderful things people did to help us and we decided we wanted to help heal ourselves by helping others who found themselves in the same predicament as us.”

“So began our blood drives, t-shirt sales, bike runs, and we appreciated our life so much more even though we wanted nothing more than to be a pre-diagnosis dysfunctional normal family again. We know that even though we are going through this and have a long road ahead, we have a platform that can be used to bring awareness and Steven wants to use his voice to bring awareness to pediatric cancer. We have seen the devastation of a child losing their life at such a tender age more than once. That affected Steven and his sister to the point where they argue about who is going to bring more awareness and who will be the doctor that finds the cure, Steven or Eva. We never knew the severity and the increasing rates of pediatric cancer so we want to use our platform and with the help of our community bring awareness to this cause. We never know what others are going through, some would love to have our bad days. Currently Steven is in in the maintenance phase of chemo. He takes chemo every day and on Wednesdays he takes a double dosage of chemo. He takes anti-seizure medication daily called Keppra after suffering a seizure from methotrexate toxicity to his brain after a spinal tap. He coded last March after contracting RSV. He couldn’t breathe and I tried to keep him breathing until the paramedics came. He coded on his way there and when we got there I heard the words on the hospital intercom “CODE BLUE 1st floor ER module 2.” I was screaming for my son trying to take it all in trying to stay aware to give the doctor any info I could provide for them. He was intubated unsuccessfully until the 3rd time. They said they may have to take other measures if the third try didn’t work. I prayed and said to them just do it. Try again. They did and it worked.”

“Looking back I see how strong Steven is, how much passion he has for helping others and know it’s our calling. In just a few days we will be having a bike run to help two families whose daughters are battling leaukemia. We decided to give back and help others because so many helped us without hesitation. We have met amazing survivors, fighters and angel families who all have stories to tell and voices to be heard. It’s our hope to be able to help, share and bring awareness and help each other crush cancer one day at a time, one kind act a time. We will continue to give back and find people to give blood and who want to make a difference as long as God allows us. Steven’s motto is “with pain comes strength” and that is what we live by.”

Wendy Davidson- Steven’s mother

Instagram: @shuugaa_shuugaa

You-tube: “Teaser!Steven Davidson- Lowrider Roll Models”

Paypal: www.paypal.me/teamsteven

Our Journey Through Cancer

The Flight of Our Lives

Within moments of receiving the devastating news, we were told there was no neurosurgeon available that night and Anthony needed to be transported to another hospital who had availability to take him. That hospital would be Children’s Hospital of Los Angeles. By the grace of God that was the closest facility equipped to be able to admit Anthony for further evaluation and determine if he needed emergency surgery to be done that night. We were told that they would have to send an ambulance from the receiving hospital over to pick up Anthony and transport him back. It’s a 35 mile distance between the hospitals and if you are familiar with Southern California traffic, especially that in Los Angeles, you will know that means it is at least a good 2 hour drive during prime traffic. This would mean that it could take about 4 hours overall from the moment they picked him up until he was taken back and arrived at CHLA. Every minute counts and makes a difference in a life threatening situation. So thankfully we were presented with the option to have him transported via helicopter. Without a doubt or even question in our minds of how much this could cost or if this would even be covered by our insurance, we signed the release form immediately and before we knew it we would be taking the flight of our lives. 

During the brief moment that we waited for CHLA’s helicopter to arrive, Ricky and I took the time to inform our immediate family members of what was going on. I can’t even begin to tell you what was said in those conversations, at least for me personally, because it all happened so fast. Those close friends and loved ones that we had been in contact with during the day letting them know we were in the Emergency Room department we were just able to respond with a brief text message to update them on the situation. We then quickly returned to Anthony’s side and let him know we would not be going back home that night. That instead he needed to be transferred to another hospital so that they could run more tests on him to see what was making him vomit. He remained completely calm (as you will notice the same has applied throughout his entire course of treatment), as we fought back the tears at his bedside. We knew we were not going home that night but we honestly had no idea when we would be able to return after that moment. 

6:50pm (Pacific Standard Time) Anthony and I boarded what would be our first helicopter ride. A dream of ours to someday experience this moment, only we would have hoped that it was under different circumstances. Still in the same hospital gown that he had been in since 9:00 that morning when we first arrived to the ED. A blood pressure cuff wrapped around his right arm and a pulse-ox on his left index finger that were both attached to a heart monitor. He was strapped to a gurney with three seat belts across his body. Two nurses to his left hand side, one monitoring his vital signs while the other one was calling in the report to the charge nurse and receiving nurse at CHLA that would resume continuation of care.

It was so loud inside the helicopter, which adds to the rush of adrenaline. Despite the fear of not knowing what would happen next, the view of Los Angeles was still amazing. Anthony and I sat there in awe taking in the skyline and city lights at night. 

We made it from Anaheim to Hollywood in 8 minutes. The helicopter is only able to carry a certain amount of weight and with it being an air ambulance they carry a lot of medical emergency equipment that adds up weight quickly. Initially I was told I may not be able to ride in the helicopter with Anthony, which was nerve wrecking to have to part with him at that time if needed. Thank God the nurse pilot said the nurses on board would leave any personal bags or equipment not needed in order to ensure that I be able to accompany Anthony. 

Luckily they did not have to leave anything behind and I was able to ride in the helicopter with Anthony. Unfortunately for his dad, Ricky, that meant that he had a long drive home from the hospital to his house and then to CHLA. I cannot imagine what that drive was like for him, sitting there in traffic alone with just time on your hands to think and take it all in. On my end, I truly had no time to think. From the moment the helicopter landed on the roof of CHLA, the next moments happened so quickly. 

This is the commemorative pin Anthony was given from
the CHLA Emergency Transport Team