BraveHearts for Kids was makes a life and death difference for children diagnosed with cancer. Our mission is to provide life-saving hope and inspiration to families facing a pediatric cancer ordeal through outreach, information and mentoring.
Hearing the doctor say the words “your child has cancer” will never be easy to hear.
Parents go through several stages throughout this process much like the five stages of grief; denial, anger, bargaining, depression and acceptance.
However, unlike losing a loved one suddenly, cancer can go on for several years with many highs and lows.
This results in stages varying in timing, duration, and cycles.
By acknowledging and understanding the possible stages you can better progress through the phases parents’ may go through.
Childhood cancer will always come out of nowhere and families are in utter shock when it happens. The connection between your healthy happy child could never be linked to a malignant tumor.
Many parents report feelings of numbness as they are unable to think clearly and struggle to remember things the doctor has said. The shock will only subside over time but, there are things you can do to better alleviate it.
Contact family or friends and reach out for their support, by discussing the situation. This helps sort through the myriad of questions and thoughts going on in your mind.
Ask a close friend to take notes when meeting with doctors, so if you do ever go through a blank moment, there is someone there, writing down important points the doctor or surgeon will mention.
Disbelief & Denial
Along with shock, denial and disbelief occur. Often parents think some crazy mistake has been made and the results couldn’t possibly be from their child.
The time-frame of this stage should be as short as possible as treatment should not be delayed due to denial of the situation.
However, second opinions are recommended and will help to reassure you with the doubts you may have.
Research from credible resources will open up your mind to the different types of cancer and the commonality between them and your child’s diagnosis.
Fear & Anxiety
Parents will fear the process ahead as it is diving into the unknown. Even if you have had some experience with cancer you will still be unsure, as every process and diagnosis is different.
Although it feels like the world has stopped, unfortunately, it hasn’t, so you going to feel pressure in your job, caring for your other children as well as the financial strain due to the high costs of the medical treatments.
To reduce anxiety beware of your thoughts and negative self-talk, stay away from the hospital vending machines as soda, possessed foods and caffeine can add to levels of anxiety.
Also, try to do light exercise daily and proper sleep are also very powerful tools in managing stress.
Parents will often question where they went wrong, or question whether or not they were paying enough attention to the early symptoms.
Mothers may question if they were responsible in their diet and lifestyle during their pregnancy.
It is important to understand that guilt links to finding reasoning.
To make more sense of the situation you will turn to yourself, and others in finding blame and reason for the situation.
This can then result in internal family conflict. It is important for parents to overcome this feeling of guilt as it may detract attention from the important tasks and decisions they need to make.
Your child is a direct extension of you.
The hopes and dreams you had for your future will echo in the hope and dreams you have for your child’s future.
These dreams will now all be in question of ever being achieved, which can add to your feelings of depression, which can be a very strong emotion.
In order to cope with depression, one must find ways to express emotions whether it’s in therapy, writing or speaking to friends.
Anger & Frustration
“Why me? Why my child?” Understand that you will not be able to ever answer these questions.
Other frustrations can come from a complex health system or a family member who does not seem to offer enough support when needed.
Being able to find a method to release this anger is very important in the coping process, exercise or meditation can allow for a positive release of emotion.
From person to person the timing and duration of the stages will never be the same but, by understanding that you are not alone in your emotions you will be more equipped to manage this time as best as possible and ultimately be more present.
Practicing self-love through caring about your personal health will help you be more present for your child and family.
Connor was only 6 weeks old when he survived an emergency brain surgery. It was in the hours of that life-changing surgery that I learned to live in each literal second. I couldn’t think about anything other than if he was still alive. I couldn’t look anywhere else than at the door to the waiting room where a nurse would emerge every 30 minutes or so to tell me if he had died or not. And I could only feel the weightlessness of my body and the twisting inside of my chest.
I was forever changed that day, for many reasons. What surprised me most was how it profoundly affected my ability and desire to look into the future. Each decision made during that crisis and the immediate days following were to give Connor the best chance to live. That’s it. Survival. I did not have the physical or mental strength to think about tomorrow – a tomorrow we knew might not have Connor in it.
We signed papers to release his tissue biopsy to other research institutions to find out what we were dealing with. When we learned that he would need a full body MRI to see if there were any others masses, we said yes. We sat in silence as our surgeon explained to us that Connor had suffered a stroke before we got him to the emergency room. We listened closely in the intensive care unit about the goals needed to get Connor to a point that we could try to un-intubate him. We counted three minutes at a time as his seizures would start and watch as his care team administered medication to help them stop.
I never spoke of the ache in my arms, how I wanted to feed him, hold him, press him close to my chest. I wouldn’t let myself. I needed to stay in the moment for my own survival and his. To long for the things I didn’t currently have wasn’t an option I’d allow for myself. And I did this by living in each moment, weighing out what was most important in the present.
On the third day after surgery, Connor successfully started breathing on his own and was increasingly agitated, making his blood pressure soar. I was asked if I’d like to hold him, and in minutes, my tiny baby boy was placed into my arms. I cried. I sobbed like I was holding my son for the first time all over again. He felt the peace too; he calmed and his blood pressure stabilized. The gift of holding my son was not lost on me. Not for a second.
The next day we were given Connor’s brain cancer diagnosis. With it came a gigantic binder that mapped our complicated treatment plan, one that would give him the best chance at life. We signed off on chemotherapy and a bone marrow transplant, a plan that his doctors felt would give the cancer the smallest possible chance of coming back. And we began to navigate our new world one moment at a time.
Connor is now eleven years old. He has no cancer in his body, and he has had no recurrences, though his chance at life has come with a cost. If you were to hang out with Connor for a day, you would see his struggles. You would see his shaky hands trying to get on his right boot. You would hear him beg to lie down and watch videos on YouTube to keep his mind busy when his body is too tired. You would repeat sentences and choose different words until you knew that Connor could hear you and understood. You would see the frustration on his face when he can’t get his head to figure out the answer. Or see the tears of embarrassment on the edges of his eyelids when he doesn’t understand what you are saying. You would help him clean his hearing aids and check batteries. You would count each morning and evening’s pill dose, prescribed to help control his ongoing nightly seizures, as a final check with him to make sure it’s correct. You would watch how he carries his right arm higher when running with his peers. You could see all the ways his needs are not the same as other kids his age.
Although I am very aware of his challenges, they are not what I choose to see. Being aware and choosing what to focus on are two entirely different things. I see a beautiful and amazing little guy who lives in each moment. For one, he is beautiful, because he resembles his handsome father! But it’s so much deeper than that. Connor is unaware that his struggles should make him feel sad, that they make him different. He only sees solutions, how to seek things that bring him joy and how to be inclusive. He knows how to use is left hand to compensate for the right. He knows to ask for help when he needs it. His visible scars do not embarrass him. And those things are beautiful, joyful and full of light.
I would not be doing him or myself any favors longing for things to be different than they are. Today is what we focus on, because it is what we have. Anything else would only take away from today’s amazing gift and invite in sadness and heaviness. I don’t know if he will play any sports. I don’t know if he will ever hold a driver’s license. I don’t know if he will go to college, let alone have a career path. I don’t know if he will ever live independently. I don’t ponder if he will marry one day or raise a child. Wondering about the future won’t change a darn thing. Wanting him to experience a specific list of things is not for me to decide. But helping him live today, experience right now, assessing each moment is exactly what we’ve chosen to do. It is how we have gotten to today, and it is always what he needs.
Connor has taught me how to live and love more than any blog, book or motivational speaker ever could. I was given the best life when I became Connor’s mom.
The latest study, from Stanford University School of Medicine in California, has investigated the potential of yet another approach: injecting “minute” amounts of two agents that stimulate the body’s immune response directly into a malignant solid tumor.
So far, their studies using mice have proven successful. “When we use these two agents together,” explains senior study author Dr. Ronald Levy, “we see the elimination of tumors all over the body.”
“This approach bypasses the need to identify tumor-specific immune targets and doesn’t require wholesale activation of the immune system or customization of a patient’s immune cells.”
Dr. Ronald Levy
Moreover, the researchers have reason to believe in a speedier trajectory toward clinical trials for this method, since one of the agents involved has already been approved for use in human therapy, while the other is already under clinical trial for lymphoma treatment.
The study’s findings were published yesterday in the journal Science Translational Medicine.
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‘One-time application’ of formula
Dr. Levy specializes in the use of immunotherapy — which is a type of treatment wherein the body’s immune response is enhanced so that it can target cancer cells — to fight lymphoma, or cancer of the lymphatic system.
There are several types of immunotherapy, including some that boost the entire immune system of the body and others that are a lot more targeted. But, the researchers note, they all come with caveats attached.
They may have problematic side effects, be time-consuming, or be simply too costly. The team’s method, however, arguably has more benefits — even beyond its potential effectiveness as a treatment.
“Our approach uses a one-time application of very small amounts of two agents to stimulate the immune cells only within the tumor itself,” Dr. Levy explains. This method can “teach” immune cells how to fight against that specific type of cancer, which then allows them to migrate and destroy all other existing tumors.
Although the immune system’s role is to detect and eliminate harmful foreign bodies, many types of cancer cell are able to evade detection in complex ways, which enables them to grow and spread.
A type of white blood cell called T cells play a vital role in regulating the body’s immune response. Normally, T cells would target and fight cancer tumors, but all too often, cancer cells learn to “trick” them and escape the immune response.
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Effective against many types of cancer
In the new study, Dr. Levy and his team delivered micrograms of two specific agents into one hard tumor site in each of the affected mice. The agents in question were:
CpG oligonucleotide, a short stretch of synthetic DNA that boosts the immune cells’ ability to express a receptor called OX40, which is found on the surface of T cells
an antibody that binds to the receptor, activating the T cells
Once the T cells are activated, some of them migrate to other parts of the body, “hunting down” and destroying other tumors.
Importantly, Dr. Levy and his colleagues note that this method could be used to target a number of different kinds of cancer; in each case, the T cells will “learn” to deal with the specific type of cancer cell that they have been exposed to.
In the laboratory, the scientists first applied this method to the mouse model of lymphoma, and 87 out of 90 mice became cancer-free. In the other three cases, the tumors did recur, but they disappeared when the researchers administered the treatment a second time.
Similarly successful results were observed in the mouse model of breast, colon, and skin cancer. Also, even the mice that were genetically engineered to develop breast cancer spontaneously responded well to this method of treatment.
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‘A targeted approach’
However, when scientists transplanted two different types of cancer tumor — lymphoma and colon cancer — in the same animal but only injected the experimental formula into a lymphoma site, the results were mixed.
All the lymphoma tumors did recede, but the same did not hold true for the colon cancer tumor, confirming that the T cells only learn to deal with the cancer cells that were in their immediate vicinity before the injection.
As Dr. Levy continues, “This is a very targeted approach. Only the tumor that shares the protein targets displayed by the treated site is affected. We’re attacking specific targets without having to identify exactly what proteins the T cells are recognizing.”
Currently, the team is preparing a clinical trial to test the effectiveness of this treatment in people with low-grade lymphoma. Dr. Levy hopes that, if the clinical trial is successful, they will be able to extend this therapy to virtually any kind of cancer tumor in humans.
“I don’t think there’s a limit to the type of tumor we could potentially treat, as long as it has been infiltrated by the immune system,” Dr. Levy concludes.
15 years ago, I heard the words that every parent fears – “Your son has bone cancer.” I was numb, I was shocked and couldn’t believe that my 12-year-old son, Ryan was ill.
That was the beginning of a 6-year roller coaster ride for Ryan. We experienced it all – the months and months of chemotherapy, 15 surgeries, and the never-ending anxiety over upcoming CT scans.
As a mom, I felt so helpless when Ryan was first diagnosed. How could this happen to my son? Why couldn’t I protect him from all of this? There was little I could do to make him better. All I could do was love him.
After the immediate shock of Ryan’s diagnosis, I did what moms do everywhere – I pulled myself together and took care of my family. Sure, the anxiety, fear, and terror were there, but I pushed it down and built a new normal for my family and myself.
There were lots of scary moments – the surgeries, the CT scans, the recurrences and many tough decisions – but through it all, I kept going, and so did my kids and husband.
We thought we were doing well. We felt other families needed the limited support resources more than ours. We were wrong.
Every day of our journey was a challenge. Caring for Ryan, trying to make sure my teenage daughters were ok, worrying about my husband and, on occasion, myself. Everything in our lives was turned upside down yet we still were functioning.
If only Ryan could survive, we would be ok, I thought. What I did not understand was the cumulative toll of the stress that was building each day. I learned that a child’s illness could leave lasting scars.
During Ryan’s illness, and since his death, every member of our family has felt the impact of pediatric medical traumatic stress (PMTS). Our oldest daughter lives in fear of every ache and pain, our younger daughter struggles with anxiety and my husband relives the most stressful experiences over and over. And me? I am always waiting for the next shoe to drop.
We learned we are not alone. Serious childhood illnesses and injuries can be terrifying experiences for children and their families- 20% of young children, 49% of adolescents, and over 30% of mother’s experience moderate to severe symptoms of post-traumatic stress disorder (PTSD).
Learning to Cope
My healing process has been lengthy and ongoing. I won’t lie to you and tell you there is some cure – one that will take away all the pain and stress. But what I learned through the years is that there are ways to minimize the impact of a child’s illness on you and your family.
That’s why I founded Case for Smiles and created Coping Space: an online resource and support site offering coping strategies and tips related to a child’s life-changing illness. It is designed to help you and your family cope, build resilience and restore balance.
Here are a few simple things I learned about coping and creating healing space for myself and my family.
#1 Set Up a Routine to Simplify Life
Keep the same morning routine and breakfast time, whenever possible – this makes starting the day more comfortable. Setting up a family check-in routine – this can happen in the morning to help plan the day, or at any time that works for your family, is also helpful.
When setting up routines, don’t forget about playtime! Setting aside a set time for your child and family to have fun is critical. Playing your favorite games, reading, drawing, or watching movies are all great ways to have fun!
Just like the morning routine, keep to the same night routine – Have a dinner and bedtime routine to help everyone relax at the end of the day. Dinnertime can be an excellent way to talk about what happened during the day.
Don’t forget to schedule time for yourself! Set time to check in with yourself each day. Take time to breathe, relax, and think about what is going well in your life at the moment.
#2 Become Mindful of Your Fears and Stress Triggers
Throughout my day, there are times when I experience anxiety due to the traumatic events from Ryan’s illness many years ago. I worry about my two daughters when I don’t hear from them regularly. If my husband is late getting in, sometimes I panic. Remember, everyone reacts differently, so you may or may not experience all the signs or symptoms of posttraumatic stress. Or you may or may not experience all at the same time. Being aware can help you take care of yourself and seek professional help if needed.
Symptoms of posttraumatic stress include:
Reliving events connected to the diagnosis (also called re-experiencing). Example: “To this day, I can’t stand the antiseptic smell of hospitals.”
Staying away from reminders of the illness (also called avoidance). Example: “I block it out and try not to think about when I was in the hospital.”
Feeling anxious, jumpy, or being “on-guard,” also called hyper-arousal. Example: “I know that doctors say we’re in the clear, but I take my daughter’s temperature every day. I am always afraid something bad will happen.”
Having strong negative thoughts and emotions (fear, guilt, blame, anger, sadness, confusion) or have trouble feeling positive emotions. Example: “If only I hadn’t done X or Y, I wouldn’t have gotten sick.”
Experiencing other symptoms, such as developing new fears, feeling “spacey”, empty or numb. Example: “Ever since my son was in the hospital, he is terrified to be left alone- he never used to be like that.”
I have found that if I can identify situations that I know will be stressful to me ahead of time, I can cope better.
#3 Don’t be afraid to ask for help
Let’s face it: no one can do it all or do it alone. Family and friends want to help and there is no shame in reaching out. For many, there is a stigma about seeking out professional help.
Take advantage of the many people who can help you and your family. Reach out to a Social Worker, Pastor, Counselor, Psychologist or Psychiatrist. There is nothing wrong with getting help including appropriate medication prescribed by your doctor. The only shame is allowing yourself to suffer when there are people ready and able to help.
There is no time limit to the trauma that comes from dealing with a child’s illness. If you are suffering, I know your journey is incredibly hard. Developing coping skills won’t necessarily make the road ahead any easier but doing so can help you manage the stress.
I am living proof that you can survive this, perhaps a bit sadder but also wiser, stronger and more resilient. I hope you will visit our new Coping Space website designed to make the journey better for you and your family.
2017 saw many “firsts” in the oncology community, in the form of several revolutionary advances in the research and treatment of cancer, including the U.S. Food and Drug Administration (FDA) approval of an immunotherapeutic to treat patients based on biomarkers rather than the site of tumour origin; the approval of the first CAR T-cell immunotherapy; and the approval of a comprehensive next-gen companion diagnostic test to identify the right patients for the right molecularly targeted therapeutic.
In 2017, the FDA also approved the FoundationOne CDx test, which can detect genetic mutations in 324 genes and two genomic signatures in any solid tumour type, and the first “biosimilar” cancer drugs, which could potentially help drive down the costs of some cancer treatments.
While immunotherapies lead to long-lasting responses for some patients, a sizable portion of patients do not respond to these agents; some patients who respond ultimately develop resistance; and we still do not have precise biomarkers to predict who will respond and who will not. The same can be said about targeted therapies, where challenges with treatment resistance continue to be a major roadblock. Above all, patients from underrepresented and underserved communities quite often do not benefit from cancer prevention, diagnosis, and treatment advances.
Recently, several experts in the fields of immunotherapy, precision medicine, and prevention and disparities research shared where they thought the cancer research community is headed next and what major accomplishments we might expect in 2018 to take us closer to conquering cancer:
Immunotherapy Advances in 2018
“We are starting to define cancers based on what their genetics tells us and how the immune system sees them,” says AACR President-Elect Elizabeth M. Jaffee, MD.
Jaffe is the Dana and Albert “Cubby” Broccoli professor of oncology and professor of pathology at Johns Hopkins University School of Medicine and the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins, and associate director of the Bloomberg~Kimmel Institute for Cancer Immunotherapy at Johns Hopkins
She predicts that 2018 will see approval of anti-PD1/PDL1 and anti-CTLA4 antibody therapeutics, as single agents or as combinations, for smaller subsets of different cancers.
“We are going from treating melanoma or lung cancer to treating smaller subsets of genetically linked cancers that have a high mutational burden, where anti-PD1/PDL1 antibodies work very well,” notes Jaffee. She predicts that we might see more biomarkers associated with the immunotherapeutics being approved, in addition to microsatellite instability (MSI)-high tumours.
Jaffee added, among other things, that “We are going to see more immunotherapy combinations being approved this year. I think we are going to see more of that but not just with those two types of antibodies but perhaps with other inhibitors of the immune response. There is a lot of good science coming out right now, and I think we have the right tools to follow up on these advancements to make noticeable progress.”
Precision Medicine Advances in 2018
“For a while now, we have been using approaches of association – application of statistics to associate an event, such as a mutation in the tumour, with a specific outcome. One of the things that’s going to happen in the next couple of years is that we are going to see a transition from such purely associative approaches to approaches that are more and more model-based, which can provide us with greater ability to analyse multi-dimensional omics data to identify the key mechanistic dependencies of cancer cells,” says Andrea Califano, PhD, Clyde and Helen Wu Professor of Chemical Systems Biology at Columbia University Medical Center. “
Another thing to look for in the near future are more integrative approaches to precision oncology, according to Califano. “We have all been infatuated with the idea that there may be a single magic bullet for solving the cancer problem; for instance by using targeted therapy or immunotherapy approaches, but such views are “rather simplistic,” Califano cautions.
“Cancer is a complex disease requiring equally complex solutions that can only be achieved by embracing an integrative and quantitative approach.” Califano speculates that integrating mutation-based targeted therapy and immunotherapy approaches with complementary approaches, such as RNA- and proteomic-based ones, is the next logical step for making precision oncology more “precise” and ultimately more valuable to the patient.
“One of the most compelling ‘big things’ emerging in the current research landscape is the use of single-cell technologies,” notes Califano, who also says that these approaches are going to revolutionise the way we think about cancer.
Califano says that liquid biopsies are becoming integral to the landscape of precision oncology; liquid biopsies can potentially detect relapse months earlier than currently possible with traditional methods, such as imaging. This allows the oncologist to switch treatment before the tumour has a chance to become further differentiated, adding to our ability to better control this disease, he says.
Califano also commented on the challenges with utilising artificial intelligence (AI) in assisting physicians with identifying the right treatments for patients.
“The complexity of biology requires novel paradigms for analysing and interpreting large data sets, both from a genomic perspective and from a computational analysis perspective, and I am very excited about the possibilities and the direction the field is taking to ultimately individualize cancer care on a truly quantitative and predictive basis,” Califano says.
Advances in Addressing Cancer Prevention and Health Disparities in 2018
“We have made some progress in addressing cancer health disparities but we still have a long way to go,” says John Carpten, PhD, professor and chair of the Department of Translational Genomics, professor in the Department of Urology, and director of the Institute of Translational Genomics at Keck School of Medicine at the University of Southern California.
“We are finally seeing a time where there are significant talks between social/behavioural scientists and basic/translational scientists in embracing interdisciplinary approaches to constructively address cancer disparities,” adds Carpten, who is a member of the AACR Minorities in Cancer Research committee.
“I think that in the coming years, we will see more studies that integrate data relevant to environmental exposures with molecular data to better understand the effect of environment and stress on cancer, particularly in underrepresented communities,” noted Carpten.
While it is well recognized that factors related to race, socioeconomic status, and environmental factors influence cancer health disparities, there is a significant dearth of information on the biology of cancer for patients from underrepresented communities, such as African-American and Latino populations; this is despite the fact that many cancers, such as prostate cancer, triple-negative breast cancer, colorectal cancer, bile duct cancer, pancreatic cancer, and multiple myeloma, disproportionately affect these populations, says Carpten.
Much of the basic research, including genomic data that populates currently available large databases, predominantly includes patients of European descent, Carpten notes. “We need to do a better job of providing information on more diverse patient populations when it comes to molecular profiling,” he adds.
We need to see significant improvements in clinical trial accrual, especially in large phase III trials testing new therapies focused on cancers that disproportionately affect minorities, Carpten notes. He says that this has been a recurring problem for decades and adds that it is time to find new and improved ways to include clinical investigators who are knowledgeable in recruiting patients from underrepresented populations into clinical trials. “We have to do a better job of including advocates from the community into the clinical trial recruitment platforms,” he says.
“There is this unfortunate reality that as we continue to battle with nationalized health care and the best way to implement it, we will also continue to see a greater divide among communities in access to quality and innovative health care,” Carpten notes.
“This is another incredible reason why we have to continue to not only engage but involve minority communities in these processes, and that happens to be a strength of the AACR. I hope to see this organization continue to be a leader in galvanizing advocacy and survivorship communities and integrating them into the scientific community, particularly in relation to translational research and clinical trials,” Carpten says.
Editor’s note: In a further effort to reduce cancer health disparities, AACR President Michael A. Caliguiri, MD, is spearheading 2020 by 2020, a collaborative effort to bring AACR Project GENIE, ORIEN, PELOTONIA, and the Biden Foundation together to sequence 2,020 cancer genomes from African-American/Black cancer patients by 2020. This effort is expected to contribute to the assembly of a national cancer data ecosystem that has mined patient data to predict future patient outcomes in minority and medically underserved populations.