#Bravekids Life Insights from Terminally Ill Children – Tissues Required

#Bravekids Life Insights from Terminally Ill Children – Tissues Required

by | Nov 30, 2018 | Honoring Brave Children, Tips for Parents, Uncategorized

Dr. Alastair McAlpine, a palliative pediatrician from Cape Town who works at pediatric palliative care centre PaedsPal, decided that, seeing that young children generally have plenty of wisdom to offer about the little things in life, he would see if they also have insights to offer about life’s bigger problems, the questions that all humans have about life’s purpose and meaning?

To this end, he decided to present a few of these bigger philosophical questions to the young, terminally ill children under his care as part of an assignment in his palliative care diploma program at the University of Cape Town.

The pediatrician shared the results in a series of tweets last week and boy, did they  rack up plenty of retweets and tears!

Be warned!! Have a box of tissues at hand and do not be surprised if the “ugly cry” makes an appearance!

McAlpine asked what they had enjoyed about life and the people, places and things that suffused their lives with meaning, and it turns out the terminally ill children, ages 4 to 9, had an abundance of good advice to share…

Here is the expanded thread he posted on Twitter:

NONE said they wished they’d watched more TV.

NONE said they should’ve spent more time on Facebook.

NONE said they enjoyed fighting with others.

NONE enjoyed hospital.

MANY mentioned their pets: “I love Rufus‚ his funny bark makes me laugh‚” “I love when Ginny snuggles up to me at night and purrs‚” and “I was happiest riding Jake on the beach.”

MANY mentioned their parents‚ often expressing worry or concern: “Hope mum will be okay. She seems sad‚” “Dad mustn’t worry. He’ll see me again soon‚” and “God will take care of my mum and dad when I’m gone.”

ALL of them loved ice-cream.

ALL of them loved books or being told stories‚ especially by their parents: “Harry Potter made me feel brave‚” “I love stories in space‚” and “I want to be a great detective like Sherlock Holmes when I’m better.”

Folks‚ read to your kids! They love it.

MANY wished they had spent less time worrying about what others thought of them‚ and valued people who just treated them normally: “My real friends didn’t care when my hair fell out‚” and “Jane came to visit after the surgery and didn’t even notice the scar.”

MANY of them loved swimming‚ and the beach: “I made big sandcastles‚” and “Being in the sea with the waves was so exciting! My eyes didn’t even hurt.”

Almost ALL of them valued kindness above most other virtues: “My granny is so kind to me. She always makes me smile‚” “Jonny gave me half his sandwich when I didn’t eat mine. That was nice‚” and “I like it when that kind nurse is here. She’s gentle. And it hurts less.”

Almost ALL of them loved people who made them laugh: “That magician is so silly! His pants fell down and I couldn’t stop laughing‚” “My daddy pulls funny faces which I just love‚” and “The boy in the next bed farted! Hahaha!”

Laughter relieves pain.

Kids love their toys‚ and their superheroes: “My Princess Sophia doll is my favourite‚” “I love Batman” (all the boys love Batman) and “I like cuddling my teddy.”

Finally‚ they ALL valued time with their family. Nothing was more important: “Mum and dad are the best‚” “My sister always hugs me tight‚” and “No one loves me like mummy loves me.”

Take home message: Be kind. Read more books. Spend time with your family. Crack jokes. Go to the beach. Hug your dog. Tell that special person you love them.

These are the things these kids wished they could’ve done more. The rest is details.

Oh… and eat ice-cream.

McAlpine, who is not a father himself yet, told TODAY Parents that the children’s responses change the way he approaches his work. “They humble me, and they teach me to listen,” he said. “They teach me that there’s more to helping children than prescribing medication, and that a patient is a human being with physical, cultural, psychological and spiritual attributes that we also need to address.”

Source: Life Insights from Terminally Ill Children – Tissues Required

Finishing Treatment Didn’t Feel as Good as We Thought

Finishing Treatment Didn’t Feel as Good as We Thought

by | Aug 17, 2018 | Blog, Parent's Post, Tips for Parents, Uncategorized

In April 2014, doctors found a mass in Joe’s left kidney. Two months later, he was formally diagnosed with metastatic Ewing sarcoma. After he recovered from surgery to remove his kidney, we moved to chemotherapy. When chemotherapy finished, Joe had scans and we went to his appointment to discuss radiation. We were blindsided when Dr. Staddon said radiation wasn’t necessary after all. Confused, we looked at each other. Joe asked, “Well, what do we do next?” Dr. Staddon smiled wide and said, “Go home and live your life.” Such glorious words! The elation of that moment sustained me for about 48 hours. Then I completely crumbled.

For 11 months our lives were scheduled and dictated by cancer. As a single mom, my time had been sharply divided between staying on top of Joe’s treatment, the needs of my youngest son Zack, working full time, handling billing issues, updating friends and family, etc. Having the safety net of constant attention and structure from weekly appointments with our oncology team so swiftly removed and being released back in a world I no longer recognized nor fit into anymore was startling and scary. End of treatment meant the end of actively fighting cancer, but also the beginning of actively fearing its return. It meant meeting new specialists to handle side effects of treatment. It meant scans and balancing between hope of stability and terror of relapse.

All the maybes, what ifs and the darkest of fears so carefully shoved away from my mind during treatment came forth in one incredulously overwhelming jumble of emotions. A song, sight or thought would cause my throat to close and eyes to fill. Dreams played out scenarios I refused to acknowledge when awake. Any sign of pain or illness in my boys brought panic.

Some would tell me I should just be grateful my son survived. (Of course I was!) Some would say I was being a defeatist, fatalistic, negative or ungrateful if I acknowledged negative aspects of treatment and its aftermath. In desperation, I confided my private shame in a few others who have walked this walk before me. They shared their own experiences and I learned the struggle to lead to a normal life after treatment was actually, well, pretty normal.

I was wholly unprepared for the emotional battering and am beyond thankful for those who helped me through to the other side. I pay it forward by reaching out to others. Every family touched by childhood cancer has a story that is uniquely theirs. Yet, we share the experience of living a life completely overturned, then overturned again (some of us more than once). This binds us together in an unbreakable bond of love, pain, familiarity and understanding. Having the ability to speak freely and share the threads of commonality that run within our community is incredibly humbling and cathartic.

Eventually we all find our way. It just takes time and remembering to treat ourselves with the same compassion, understanding and kindness we extend to everyone else.

Source: Finishing Treatment Didn’t Feel as Good as We Thought

Cancer is Not a Singular Experience

Cancer is Not a Singular Experience

by | Apr 11, 2018 | Parent's Post, Survivor Stories, Tips for Parents, Tips to Help, Uncategorized

Cancer is Not a Singular Experience, It’s Plural!

Whether it is adult cancer or Childhood Cancer, no matter how much it feels as if we are going through it alone, nothing could be further from the truth!

When an individual is diagnosed with cancer, it doesn’t only affect that specific individual, it affects many, and this is never truer than when it is a child that has been diagnosed with cancer.

The child is not the only one going through everything that this horrible disease causes – the parents, siblings, other family members and friends of the child and parents also experience it.

NOBODY escapes the scourge of cancer once it hits a family – nobody escapes unscathed!

Cancer is not a singular experience, it’s plural. I know this to be true because as a Survivor myself, I’ve seen it and I’ve experienced it first-hand. Even when someone is diagnosed and going through treatment all by themselves, they’re not really alone. There are others involved. The doctors, nurses and medical staff are there to offer not only medical help, but also support, advice, and more…

While I was single and mostly going through this ordeal by myself though (much of it because I am the type of person who needs to deal with challenges on my own and in my own way), the amount of support that I received from friends, locally and internationally, and friends of friends who I did not even know, was Phenomenal!! It also made me realise that even though it was MY fight, there were times when I gratefully accepted help because I was too weak to do otherwise, and there were times when I had to swallow my pride and ask for help!

Whether you know it or not, there are others who may or may not have the same type of cancer as you/your child  – They are pulling for you. When it comes to Childhood Cancer, there is even more support from total strangers – other “Onco Parents” who have been or are going through the same experience, and anyone who knows them…

Cancer has a way of binding people together and causing them to feel empathy toward one another. We are a rare breed, those who’ve gone before you – we understand the difficulties you will face; we know there will be days when you’ll feel like giving up, but you won’t because somewhere inside, there’s a natural instinct to survive.

You may not see any evidence of the fact that you’re surrounded by others, but know that it is so! Each person touched by cancer cares – we know that cancer quickly teaches on that it has the power to discourage, demean and destroy a life – it wants you to think you’re the only one, that you’re alone and that no one cares, but we do! We all do! And some of us care more than others.

The next time you are feeling isolated or alone in your battle, remember that you are not alone – we are here – all you have to do is reach out!

Cancer is a demon; Childhood Cancer even more so, as it attacks innocents who have not even had a chance to enjoy life – and one that you should not take on alone – use every resource available to you to get you and your child through the nightmare!

As a parent of a Child with Cancer you need to ensure that you are strong and healthy enough to endure the long haul, and for that you need help!

Find someone to talk to – you will be surprised at how much just talking about what you are going through helps – and if you speak to an “Onco Parent” who has gone through the same fight as you, they will know exactly what to say to help.

In Africa we have a saying, “It takes a village to raise a child”

In a South African context this proverb is extricably linked to the value or principle of “Ubuntu”. People have different interpretations of this value but the key message to take from this value is that no one is an island and we should care for the welfare of others like we do for ourselves.

“Ubuntu is a philosophy that considers the success of the group above that of the individual.” Stephen Lundin- Ubuntu!

The word ‘Ubuntu‘ originates from one of the Bantu dialects of Africa, and is pronounced as uu-Boon-too. It is a traditional African philosophy that offers us an understanding of ourselves in relation with the world.

According to Ubuntu, there exists a common bond between us all and it is through this bond, through our interaction with our fellow human beings, that we discover our own human qualities.

Or as the Zulus would say, “Umuntu Ngumuntu Ngabantu”, which means that a person is a person through other persons. We affirm our humanity when we acknowledge that of others.

The South African Nobel Laureate Archbishop Desmond Tutu describes Ubuntu as:

“It is the essence of being human. It speaks of the fact that my humanity is caught up and is inextricably bound up in yours. I am human because I belong.

It speaks about wholeness, it speaks about compassion.

A person with Ubuntu is welcoming, hospitable, warm and generous, willing to share.

Such people are open and available to others, willing to be vulnerable, affirming of others, do not feel threatened that others are able and good, for they have a proper self-assurance that comes from knowing that they belong in a greater whole.”

So, the moral of the story – make use of the philosophy of Ubuntu – allow others to help you in your battle against the beast Cancer – you are not alone!

Source: Cancer is Not a Singular Experience

The Importance of the Immune System

by | Apr 9, 2018 | Featured, Latest Pediatric Cancer News, Tips for Parents

The immune system is the body’s defense against infectious organisms and other invaders.

Through a series of steps called the immune response, the immune system attacks organisms and substances that invade body systems and cause disease.

The immune system is made up of a network of cells, tissues, and organs that work together to protect the body.

One of the important cells involved are white blood cells, also called leukocytes, which come in two basic types that combine to seek out and destroy disease-causing organisms or substances.

Leukocytes are produced or stored in many locations in the body, including the thymus, spleen, and bone marrow.

For this reason, they’re called the lymphoid organs. There are also clumps of lymphoid tissue throughout the body, primarily as lymph nodes, that house the leukocytes.

The leukocytes circulate through the body between the organs and nodes via lymphatic vessels and blood vessels. In this way, the immune system works in a coordinated manner to monitor the body for germs or substances that might cause problems.

The two basic types of leukocytes are:

  1. Phagocytes, cells that chew up invading organisms
  2. Lymphocytes, cells that allow the body to remember and recognize previous invaders and help the body destroy them

A number of different cells are considered phagocytes. The most common type is the neutrophil, which primarily fights bacteria. If doctors are worried about a bacterial infection, they might order a blood test to see if a patient has an increased number of neutrophils triggered by the infection. Other types of phagocytes have their own jobs to make sure that the body responds appropriately to a specific type of invader.

The two kinds of lymphocytes are B lymphocytes and T lymphocytes. Lymphocytes start out in the bone marrow and either stay there and mature into B cells, or they leave for the thymus gland, where they mature into T cells. B lymphocytes and T lymphocytes have separate functions: B lymphocytes are like the body’s military intelligence system, seeking out their targets and sending defenses to lock onto them. T cells are like the soldiers, destroying the invaders that the intelligence system has identified.

Inside you, a daily battle is being waged and your immune system is at the frontline. Most of the time, you may not even notice it’s there, but over the course of your life your immune system will guard you against hundreds of potentially fatal threats. Emma Bryce explores the different components of this system and how, together, they do their vital work.

How it Works

When antigens (foreign substances that invade the body) are detected, several types of cells work together to recognize them and respond. These cells trigger the B lymphocytes to produce antibodies, which are specialized proteins that lock onto specific antigens.

Once produced, these antibodies stay in a person’s body, so that if his or her immune system encounters that antigen again, the antibodies are already there to do their job. So if someone gets sick with a certain disease, like chickenpox, that person usually won’t get sick from it again.

This is also how immunizations prevent certain diseases. An immunization introduces the body to an antigen in a way that doesn’t make someone sick, but does allow the body to produce antibodies that will then protect the person from future attack by the germ or substance that produces that particular disease.

Although antibodies can recognize an antigen and lock onto it, they are not capable of destroying it without help. That’s the job of the T cells, which are part of the system that destroys antigens that have been tagged by antibodies or cells that have been infected or somehow changed. (Some T cells are actually called “killer cells.”) T cells also are involved in helping signal other cells (like phagocytes) to do their jobs.

Antibodies also can neutralize toxins (poisonous or damaging substances) produced by different organisms. Lastly, antibodies can activate a group of proteins called complement that are also part of the immune system. Complement assists in killing bacteria, viruses, or infected cells.

All of these specialised cells and parts of the immune system offer the body protection against disease. This protection is called immunity.

Immunity
Humans have three types of immunity — innate, adaptive, and passive:

Innate Immunity
Everyone is born with innate (or natural) immunity, a type of general protection. Many of the germs that affect other species don’t harm us. For example, the viruses that cause leukemia in cats or distemper in dogs don’t affect humans. Innate immunity works both ways because some viruses that make humans ill — such as the virus that causes HIV/AIDS — don’t make cats or dogs sick.

Innate immunity also includes the external barriers of the body, like the skin and mucous membranes (like those that line the nose, throat, and gastrointestinal tract), which are the first line of defense in preventing diseases from entering the body. If this outer defensive wall is broken (as through a cut), the skin attempts to heal the break quickly and special immune cells on the skin attack invading germs.

Adaptive Immunity
The second kind of protection is adaptive (or active) immunity, which develops throughout our lives. Adaptive immunity involves the lymphocytes and develops as people are exposed to diseases or immunized against diseases through vaccination.

Passive Immunity
Passive immunity is “borrowed” from another source and it lasts for a short time. For example, antibodies in a mother’s breast milk give a baby temporary immunity to diseases the mother has been exposed to. This can help protect the baby against infection during the early years of childhood.

Everyone’s immune system is different. Some people never seem to get infections, whereas others seem to be sick all the time. As people get older, they usually become immune to more germs as the immune system comes into contact with more and more of them. That’s why adults and teens tend to get fewer colds than kids — their bodies have learned to recognize and immediately attack many of the viruses that cause colds.

Cancers of the Immune System

Cancer happens when cells grow out of control. This can include cells of the immune system:

Leukaemia, which involves abnormal overgrowth of leukocytes, is the most common childhood cancer.

Lymphoma involves the lymphoid tissues and is also one of the more common childhood cancers. With current treatments, most cases of both types of cancer in kids and teens are curable.

Although immune system disorders usually can’t be prevented, you can help your child’s immune system stay stronger and fight illnesses by staying informed about your child’s condition and working closely with your doctor.

Source: The Importance of the Immune System

More Hope for Children with Leukaemia

by | Apr 7, 2018 | Latest Pediatric Cancer News, Tips for Parents, Tips to Help

The average survival rate for Acute Lymphoblastic Leukaemia (ALL), the most common type of children’s cancer, has gone from under 20% to 85%  – unfortunately this is not the case in South Africa though ?

Cutting-edge treatments are constantly being developed for even the toughest cases, but once again, these treatments are not available in South Africa!

Children’s cancers are unique, but the lessons learned from the extraordinary success of consecutive clinical trials have paved the way for advances in cancer treatment in general. New scientific breakthroughs are happening extremely quickly in medicine these days, far quicker in actual fact than the ability to develop and fund new treatments. Unfortunately this also means wrestling with uncomfortable questions of fairness in deciding priorities — who will be treated first?

One of the most important developments in Childhood Cancer is the ability to tailor treatment — to figure out who needs powerful doses of chemotherapy and who could do with less. Lighter treatment causes less long-term damage to the rest of the developing body — very important for children who have their whole lives in front of them. In some subgroups of patients with ALL, we’re getting better-than-90% survival rates using minimal therapy. This will allow children to recover more fully, without long-term side-effects and with a normal life expectancy.

Right now, there are two groups of kids with ALL at high risk of dying: those with treatment-resistant disease, and those whose cancer recurs either more than once or after receiving a stem-cell transplant.

Even for these toughest cases though, there is now a promising new treatment: a type of immunotherapy calledCAR-T that harnesses the body’s own immune system to destroy cancer cells. Doctors remove immune cells, called T cells, from the child’s blood and reprogram them to find and destroy the leukaemia cells by changing the DNA that controls the immune response. Those cells are put back into the child’s bloodstream, where they multiply then track down and kill the cancer cells. (The first Child with Cancer to receive this experimental treatment, a girl who had been destined to die, is alive and well 12 years later.)

As doctors and scientists home in on the toughest cases, treatments will become more “customised” and more expensive. It currently costs in excess of $2 million to save the life of a child sent to the U.S. for the new CAR-T therapy. If this treatment was available in other countries, it would cost far less, and would be far less disruptive to both the Child with Cancer as well as the rest of the family who generally have to move to the US for at least the duration of the treatment.

It is hoped that the role of CAR-T treatment can be expanded to other types of cancer next — for example, brain tumours, which are the second-most-common group of childhood cancers.

The problem is that many medical aids will not cover such exorbitant costs. Also, there’s never going to be enough money to fully fund every emerging treatment and to try “everything” in every case, so pursuing one type of costly treatment means less money for another.

Many medical ethicists, governments, health-care professionals and ultimately everyone in society is grappling with the question of “If it costs $2 million for that treatment for one child but there are far fewer children with leukaemia than there are adults with breast and prostate cancer, and that amount would treat far more adults, What is a fair expense?”

Ultimately, every advance we make in treating any type of cancer could help us to develop treatments for others, and hopefully we will see survival rates continue to rise, allowing the bedside role more and more to encompass hope as well as compassion.

Source: More Hope for Children with Leukaemia

Causes, Risk Factors, and Prevention of Childhood Brain and Spinal Cord Tumors

by | Apr 6, 2018 | Latest Pediatric Cancer News, Tips for Parents, Uncategorized

What causes brain and spinal cord tumors in children?

Generally speaking, “cancer” is a broad name for a condition in which cells in a particular part of the body begin to malfunction. They begin to grow, divide, and replicate more quickly than normal cells, and/or they do not die as normal when they are worn out or damaged. When these abnormal, or “cancerous”, cells originate in the brain or the spinal cord, they usually form a clump or a mass known as a tumor. As the cancerous cells continue to replicate, the tumor grows until it begins to cause damage to the brain and/or the spinal cord.

Scientists are still trying to learn exactly why some cells grow, function, and die normally, while others grow abnormally and develop into a brain or spinal cord tumor. Brain and spinal cord tumors are most likely caused by mutations (random changes) in the DNA within each cell (our DNA provides instructions governing the function of each cell in our body, and ultimately how our body looks and functions as a whole). Specifically, scientists believe that mutations to two specific types of genes may be the ultimate cause of brain and spinal cord tumors in children: oncogenes control when cells grow and divide and tumor suppressor genes slow down cell division and instruct cells to die at the proper time. Whether inherited from parents or spontaneous and random, mutations to these particular genes may cause cells to malfunction and ultimately become cancerous.

Ultimately, however, scientists do not know why these mutations occur, especially in children. While lifestyle choices such as smoking can cause genetic mutations (and thus cancer) in adults, there are no known lifestyle risks associated with childhood brain and spinal cord tumors in children. Unfortunately, the genetic mutations at the root of the tumor growth are simply random changes that cannot be predicted or prevented.

Are there risk factors for brain and spinal cord tumors in children?

A “risk factor” is anything that increases an individual’s chances of developing a disease like a brain or spinal cord tumor. As noted above, most cases of brain and spinal cord tumors in children appear to be caused by random genetic mutations without a known cause. There are very few known risk factors associated with this type of childhood cancer. The only two well-established risk factors are radiation exposure and certain rare inherited genetic conditions.

  • Radiation exposure: exposure to large amounts of radiation is known to cause some types of cancer, including brain and spinal cord tumors in children. Now that this danger is known, the medical community takes active steps to avoid exposing the brain and central nervous system of children to radiation unless absolutely necessary. In some cases, radiation may be required as part of treatment for another type of cancer; in these cases, the benefits of treating one type of cancer must be weighed against the potential risk of developing a brain or spinal cord tumor in the future.
  • Inherited genetic conditions: in less than 5% of cases of childhood brain and spinal cord tumors, children have an inherited genetic condition that may increase their risk of developing a tumor. These genetic syndromes themselves are exceedingly rare, and may include:
  • Neurofibromatosis type 1 (von Recklinghausen disease)
  • Neurofibromatosis type 2
  • Tuberous sclerosis
  • Von Hippel-Lindau disease
  • Li-Fraumeni syndrome
  • Gorlin syndrome (basal cell nevus syndrome)
  • Turcot syndrome
  • Cowden syndrome
  • Hereditary retinoblastoma
  • Rubinstein-Taybi syndrome

Can the development of brain and spinal cord tumors in children be prevented?

Can the development of brain and/or spinal cord tumors in children be prevented? This is a question many parents will ask themselves upon receiving the terrible diagnosis that their child has a brain or spinal cord tumor. The answer is always “no”. There is no known way to prevent or protect against brain or spinal cord tumors, and absolutely nothing that parents or guardians could have done to prevent this disease.

Source: Causes, Risk Factors, and Prevention of Childhood Brain and Spinal Cord Tumors