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When the doctors first come to the door of your hospital room and call your parents into the hallway, even when you’re young, you know that they’re not bringing good news.  The look on your parent’s faces and the sight of your mother’s tears flowing on your father’s shoulder is evidence enough that you’re really sick.  The diagnosis that you have a cancerous brain tumor the size of a golf ball is overwhelming and you know from that moment forward this will surely be a defining moment.

Doctors at Johns Hopkins chose to surgically remove my malignancy.  Surgeons were confident they removed all the cancer.  To reduce the probability of further brain damage, they chose not to follow with radiation or chemo.  MRIs were to follow for the next several years until they said I was in remission.

Some people might end the story right there.  You think that’s a happy ending, right?  Surgeons and the oncologists are looking for the best outcome to extend life.  What they don’t tell you is a term called sequelae.  The definition of sequelae is an abnormal condition resulting from a previous disease.  My story continues with what oncologists say is mild sequelae.

Since the tumor location was in an area that controlled emotion and confidence, I have struggled with crippling anxiety.  Anxiety hits everyone at some point in their life, and they will typically push through it.  This, however, has not been the case for me for several years now.  Sweating, dreading, feelings of sickness, stressing, and irrational anger are all recurring symptoms of my day to day life.  My anxiety prevents my great potential of establishing a serious relationship.  Even situations as simple as going to the grocery store, alone, to buy groceries for my parents has caused me to stress to the point of fear.  While I believe it has been the biggest mistake I’ve made letting my anxiety take control of me, it has shaped and is continuously shaping me into a stronger person than i could have ever imagined.  it has also given me an experience that, through anguish and hardships, changed my life for the better.  Without my experience, I never would have realized who I am today, or how much i can overcome.  Without it, I wouldn’t be strong.  With a growing calmness and confidence, I keep looking upward.   the way I see it, the sky is the limit.

Now it’s time for the next big step.  It’s a little scary and yet exciting.  I am really looking for college to be a place of personal growth.  I am looking for a clean slate and the possibility of starting anew; a new life, new friends, and new ways of thinking.  I am hoping this is where I can expand my academic and my social horizons.  I want things to be bigger and better.  I want college to make me even stronger physically and emotionally.  I want to know that i can survive on my own and realize I can talk to girls without feeling like I need to throw up.  I found, through my life experiences, it is about always looking forward and upward.  The past is the past.  I know this path will be the path to shape my future.

I am looking forward to studying computer science at the University of Maryland.  I am hoping to get my degree and develop computer and phone applications to help children and families that have struggled with cancer and mental illness.  With the strength of God, I will succeed.  The way I see it, He gave me the opportunity to continue with life and now it’s my chance to give back.

-Alex Dattilio

There were few things in life that I was focused on more than my grades and cheerleading.  I wanted to be valedictorian of my class; I wanted to cheer every Friday night and practice the rest of the time, I have been called strong-willed and dedicated: I knew what I needed to redirect my focus.  On November 15th, 2011, exactly two weeks after my sixteenth birthday, I was diagnosed with leukemia.

After the C word was said, my first thought was “But I haven’t taken my math test!!!”  I look back now and shake my head at such a petty thing.  There I was, just being told that my blood had turned against me and all I could think of was a silly algebra II test.  The next morning, I was transferred to Egleston in Atlanta.  My dream of valedictorian was put on hold, now I didn’t even know if I would make it to the end of my sophomore year.

Scared is an understatement to how I felt that night.  But when I got to Atlanta, I knew I was in the best care possible.  I quickly got my “spunk” back and started making jokes with the nurses.  All I knew about cancer patients was the stereotyped, constantly-on their-death-bed patients from movies.  As far as pediatric cancer patients, St. Jude had painted a very clear picture of the lethargic bald child I would become.

But I never did.  I stayed healthy except for the whole having cancer thing.  Some people say that they felt alone during treatment, but I never felt that way.  Maybe because I had Camp Sunshine, a camp for kids with cancer.  Camp made me keep my head up.  With all of the survivors at camp, I knew there was light at the end of a tunnel that I thought was blocked off.  The funny thing was, I would go to the mall without a wig or bandanna or anything.  But there at camp, with nothing but people who would understand because they had been bald, I felt self-conscious and wore a bandanna they whole time.

With the hope that I found at camp from seeing other survivors, I felt I could continue to fight.  I learned a lot of things during my battle.  Now that I am just outside of the tunnel that I was encompassed in,  I can see what really matters.  I still care about my grades.  I maintained my 4.0 and will be graduating at the top of my class.  But somewhere along the way, that lost its meaning.  Believe me, it’s still important to me to make good grades but I won’t stress over it anymore.   I was still able to cheer through my treatment but I found it didn’t hold as much of a weight in my life anymore.

I don’t fret over little things anymore.  i have a new outlook on life.  I found out who my true friends were and I found two more best friends.  my mom, the woman who has gone with me to every single treatment.  But more importantly,  I found God as my other best friend.  looking back, I see his hand in everything, even before treatment.   I had always been a strong Christian, or so I thought.  I grew in my faith but I have learned I have a lot of growing left to do.

My diagnosis has altered my life in so many ways.  I changed my career and have been accepted into Georgia Southwestern State university’s nursing program where I will earn my bachelor’s degree. my eyes have been opened to the real pediatric cancer world and I don’t want to leave it.  I will become a pediatric oncology nurse.  I cannot say that I am happy I got cancer, but I can say that I am thankful for all the opportunities it has opened up for me.

I thought it was going to be just a regular day at school, but I came home with a lump in my throat. Our guidance counselor came in to my class to tell us that a fellow sixth grader was very sick; he had been diagnosed with cancer. Our friend would be absent from school for the remainder of the year. I hoped he was in good care, as I was, so he would become a cancer survivor too.

At twenty three months old, I was diagnosed with stage IV neuroblastoma, a highly aggressive cancer of the nervous system with a thirty percent survival rate. My treatment that lasted fifteen months, done exclusively at Memorial Sloan Kettering Cancer Center, consisted of surgery, high dose chemotherapy, radiation and a bone marrow transplant. While this protocol was experimental, it was my best chance to survive.

Cancer was a part of my everyday vocabulary growing up. My life was filled with doctors’ appointments, with new ones being added frequently. I had to deal with the everyday side effects of the toxic treatment I had received, such as hearing loss, short stature, heart muscle damage and numerous medications, including daily growth hormone shots that lasted for more than seven years.

When we found out that our classmate had been diagnosed with leukemia, I witnessed hysteria break out in my school. Students and teachers alike were crying and distraught. I didn’t understand why everyone was so upset. I later realized that the casual dinner conversations about cancer and its effects on my family were not the norm, but they were my norm. I was confused by the type of reactions from my classmates and teachers in response to this situation.

It was at this point in my life when I realized that “my normal” was anything but. For the first time, I struggled emotionally with my diagnosis and health issues. I needed to do something proactive so that I could feel as if I were helping my classmate. That summer I started a read-a-thon to raise money for a cure. This was the first of many fundraisers I have held since my friend’s diagnosis. I feel a huge sense of accomplishment in knowing that I am helping raise money towards cancer research.

Seeing another child struggle though cancer motivated me to step up and make a difference for other children battling cancer. My friend having cancer changed my life as much as my own diagnosis. To this day, my classmate does not know how much he has inspired me. He has helped me to turn a very negative situation into a positive one that is benefiting others. The charity work and fundraising that I have done over the years has had a significant impact in my life. It has sparked my desire to help others. As a future educator, one of my most important goals will be to ignite that passion in my students. I also plan to continue with my fundraising efforts until a cure is found.

Essay| Kori Hines

As a seventeen-year-old cancer survivor, I have learned a lot about the difficulties life often presents, but I have faced every obstacle in my life with determination and courage. On January 6, 2011, at the age of 13, I was diagnosed with Acute Myeloid Leukemia. And on October 6, I became a successful bone marrow transplant recipient. With my own tenacity, the support o my family, and the loving care of medical providers; I overcame my 30 percent chance of survival to become a cancer survivor and a success story.

 
In 2012, I began my own 501(c)(3) nonprofit organization called the Kori Cares Foundation. As Co-founder and Vice President of the Kori Cares Foundation, I am serving my community by providing love and support to the families of pediatric cancer patients in the form of hygiene care packages for the parents and caregivers of newly diagnosed cancer patients at children’s hospitals. The Kori Cares Foundation is an organization that was developed solely to address a specific need in my community; however, I hope to bring the Kori Cares love to other communities in the future.

 
My experience with cancer has even led to me serving as a spokesperson for organ donation and transplantation. I have given speeches to small groups and to gymnasiums filled with thousands of people regarding the need for transplant donation and the effect that one person can have by becoming a living donor. Through my participation and leadership in organ donation awareness, I have influenced many members of my community about the significance of bone marrow and organ donation, propelling many people to join the registry and potentially save a life.

 
Throughout my journey as a leukemia patient, I witnessed the altruism of many nurses and they inspired me to make a difference in the lives of others. Thus, one of my greatest aspirations is to become a Pediatric Oncology Nurse Practitioner and Physician’s Assistant so that I have the opportunity to leave a positive, lasting impression on all of the patients and families who are within my care, just a my nurses did for me. As I enter adulthood and into my chosen career, I will be able to help other patients understand the positive outlook that can be taken from the arduous experiences of a medical diagnosis. Without the impact of cancer in my life, I would never have known how much of a positive influence I could have on the lives of others.

 
For many people, cancer, understandably, is a frightening word because treatment is incredibly difficult – a perception that I can attest to. However, cancer has also given me strength and it has allowed me to grow mentally, emotionally, and spiritually. Although, medical diagnoses and other circumstances of life are difficult to overcome, such afflictions help us grow and allow us to truly appreciate the goodness that life has to offer. Without cancer, I would not have had the advantage of realizing, at such a young age, the true value of every life experience – those both bad and good.

I am a cancer survivor. To be specific, I survived neuroblastoma, and at that time, I was told I had a ten percent survival rate. But, through the restoration and healing of God, the expert team at Children’s Hospital in Philadelphia and the love of my family and friends, I am better than ever. The cancer is gone but I continue to deal with the negative side effects that occurred from my life saving treatment of chemotherapy, radiation, thoracic surgery, and a bone marrow transplant. The cancer and treatment is old news, and instead, I acquired a relentless determination to pursue the things that are important and a better understanding of what truly is important and what is not worth my time.

 
As a childhood cancer survivor, I am in the unique position to understand the collateral damage that occurs with a cancer diagnosis. I also have some distinctive skills in the field of web technology and design and the close collaboration with my brother who is a computer science major. My brother and I are currently working on a nonprofit charity proposal that is inspired by the enormously popular Facebook phenomenon. This idea incorporates the social networking aspect of Facebook, but is solely utilized by children who have been diagnosed with cancer.

 
The collateral damage was my inspiration. Children with cancer often feel isolated and alone, often separated from friends and loved ones for long periods of time due to prolonged and frequent hospitalization, extended time out of school and a generalized feeling that no one really knows how they feel. Our proposal we hope to call Lifelinekids.org will offer an opportunity for children and teens that have cancer to reach out to each other.

 
I believe I serve as a role model due to the positive way in which I have been able to overcome my physical and learning obstacles. My high school classes are all academic courses, even though many counselors have encouraged me to drop to general classes due to my learning disability. I did not let my schoolwork suffer due to time spent in the hospital.

 
I include my love of God. To understand me, you should also understand my spiritual side. My favorite bible verses are about strength. “Greater is he who is in me, than he who is in the world”, and “I can do all things, through Christ who strengthens me.”

 
As far as my aspirations, I am still a work in progress. I have a wide variety of interests, a great deal of compassion and empathy for those struggling, I am a self-driven individual, and I believe I will be successful in the things in which I have a true passion. I hope to inspire those I meet, causing them to appreciate their life and to remind them to pass it forward.

 
Sincerely,
Kurtis S. Wilson

Sometimes the role of an advocate is to give their platform to those they champion. At Faith Hope and Love Jesus we award an annual college scholarship. Although, this young woman did not win, her essay was so moving that I wanted to share it here. Thank you for reading it and looking into the window of a childhood cancer survivor.

By Kyla McDougall

“A handful of moments, I wished I could change, and a tongue like a nightmare, that cut like a blade.” I sat in my hospital room hooked up to an IV. The dripping of my chemo was matching the beat of the song. The nurse walked in the room to check my vitals. I gave her a gracious smile. “Are you in any pain?” she asked. “No, I’m fine.” I replied, even though I was hurting, but the pain I was feeling wouldn’t be numbed by any pain killers. While listening to these lyrics, I realized music isn’t just about the beats and guitar solos. When artists write these songs they are trying to express what they feel in the only way they know how, music. Music is the passageway to the soul. When you listen to the song, you are actually listening to the writer’s soul. The music was the only thing that could numb my pain.

Being able to express one’s self is a very important thing. When people keep their feelings bottled inside it can become a problem by causing depression, anxiety, and suicidal thoughts. What most people don’t realize is that music can help save a person’s life. Whether it is because they wrote down some lyrics or listened to a song that relates to their situation, it helps express what they want to say.

The song “Therapy” by All Time Low made me realize I need to express myself because if I didn’t I would end up afraid of telling people my opinions. I started listening to more music and trying to figure out the meaning behind them. There are so many life lessons in music and I wanted to learn them all. I began to become a better person because of what the music was teaching me. I found myself more joyful through listening to the music.

Music can help people in so many ways and it has the benefit of letting them do it creatively. I want to help people. I don’t want to be the doctor who saves a life by giving a transplant though. I want to help people the way the music helped me. It helped make me feel more alive when I felt dead inside. I want to help create music that heals the soul.

At first, I thought the best way to write this post would be to share my perspective as a caregiver. One who is the core of the support system for a childhood cancer survivor, but then it hit me to save that for another time. Instead, I need to focus on the elements that matter the most according to my conversations with Joey. It keeps resonating with me how I always return to my precious boy. My muse in life and this journey I continue on. So, short, sweet and to the point is what this latest installment will be. Here are ingredients for a mixture to a solid, substantial, and tangible support system.

 
• Start each day listening to what your child has to say – let them be the barometer. No one truly knows how they feel but them.
• Make everyday a fun day – filled with laughter. Even if it is just one thing or moment, make the most of it.
• Get out and about whenever they are up to it. Return to their favorite places until they say stop.
• Travel.
• Take loads of pictures.
• Include others, friends, family, classmates, neighbors, strangers, doctors, nurses, counselors – you see where this is going. The very nature of an effective support system requires ‘the village’ to engage in life. Let it emanate from the core out in an explosive rainbow that hovers over everything.
• Encourage hobbies and activities they have an inkling of interest in. Whether it is just for a day or more, at least they would have a chance to know if it is for them or not.
• Let them make decisions on as much in their daily routine as possible – what they want to eat, when they want to nap or go to sleep, what they want to wear. Cultivate the ‘be in the moment’ so they know life is important and they have some control of it.
• Let there always be peace and calm.
• Let them try new things – Of course, it has to be safe and they need to know their limits.
• Indulge them – even when others say you are spoiling them. Remember, you don’t know how long they will be with you. This is the living life to the fullest. From the outside it may appear to be spoiling, but it is not.
• Be honest with your emotions. However, be careful in the weak moments, because you are their strength. Although, they don’t realize how much of a strength they are to you. It is the ultimate symbiotic relationship outside the womb.
• Respect their wishes.
• Celebrate them – everything they do.
• Encourage them.
• Trust them.
• Advocate for them.
• Love them unconditionally. Really, LOVE THEM UNCONDITIONALLY.

 
I miss you Joey…

As promised, I will discuss a few of the most common late effects after the treatments are completed. The common ones come from some of the same chemotherapy agents used in a variety of illnesses such as Adriamycin, Vincristine, and intrathecal Methatrexate. The intrathecal means it is delivered directly to the CNS or central nervous system via a spinal tap. These three drugs have proven to be powerful weapons in the fight against cancer cells. They have allowed individuals to reach remission both long and short term. The key of course is the long term remission or cure. Attaining a state of health with minimal disadvantages is still a bit of an unknown. The doctors know how to get to remission but because of the unwanted results of late effects they continue to tweak with trials on current patients and record from past patients. Let’s get started.

Adriamycin – This behemoth of a drug is used in most of the diagnoses at some stage of treatment. It may be tried during the first round or after a relapse. The problem is the affect it has on the heart. It damages the muscles and valves, which in turn causes changes to the pumping ability. Anyone that has received this chemotherapy agent must have a Muga Scan regularly. Depending on the dose given, the timeframe may be annually or some variation of this. Joey’s was annually because of the high dose he received as well as the number of times it was given. The Muga Scan registers and measures the ejection rate of the heart’s function. We love any high number, but definitely above 60%. This means the valves and muscle are working properly. The down side is the chest pains, physical weakness, and decreased stamina. In addition, there may be a need for heart medication. Unfortunately, for Joey, he experienced all these symptoms. He also began taking blood pressure medication in hopes of mitigated these late effects. Sadly, he did not experience the relief we hoped for.

Vincristine – This is another powerhouse drug that works wonders for killing cancer cells and helping patients reach remission. The late effects are seen with dexterity and balance. These are also experienced during treatment that results in the dose being lowered. The goal is that the decrease will not diminish its ability to rid the body of cancer. The dexterity issues that remain include ability to hold pens and pencils or similar objects. It also showed up in the handwriting being sloppy or illegible. The balance concerns manifested with walking or running. It can be clumsy and awkward at times. Joey would make adjustments in silence as I am sure everyone with this problem does. One of these included staying away from sports.

Intrathecal Methotrexate – This is a drug that can be taken by mouth as well. However, the intrathecal process allows it to pass over the natural defense of the brain barrier. Those nasty cancer cells love to hide here. Unfortunately, the consequences are more serious with learning disabilities being the start. Joey had his share of impaired cognitive reasoning and spatial deficits. For children under the age of two that receive this therapy, the chances increase for these types of problems. Joey was two and a half when he got his first dose. In addition, he received quite a bit of this during his five years of treatment. It becomes crucial to equip them with work arounds, strategies, and tactics to minimize any late effects. Since they are seen during treatment, this process starts at the beginning. This translated to no rushing and yelling. Calmness and peace make a big impact. Chaos only exacerbates the issue. When school starts there is a need for medical exceptions for taking tests or having someone take notes for you. Vincristine heightens this process as well with dexterity problems.

Let me stress that all children that survive don’t face these or if they do, it is minimal. The issue is that they experience any amount of late effects. Caregivers and medical professionals have developed an infrastructure of support through information. We share it with each doctor visit or patient survey. We reach out to each other as we forge along with these strong and brave children a way through late effects. Encourage your child to talk about any problems they experience as a way for them to know they are not alone nor have to deal with this in silence. The treatment modifications continue to combat the problems associated with late effects with information gleaned from children that survive. It is a daunting task that we will champion until there are no late effects experienced by any child. Remain vigilant and informed about this issue. Never ignore or minimize it. Instead fight it with all the weapons available.

My next post will discuss the support system and its importance to the childhood cancer survivor. As always, thanks for stopping by. My goal is that this will empower anyone that reads it.

Many blessings!

-Marsha

In my last post we talked about the psychological impact of treatment on survivorship. There are two words that inevitably drive the conversation. Those two words are late effects or residual side effects experienced by the individual that has received a diagnosis of a blood disorder or cancer. I am going to review the synopsis of my conversations with Joey after his bone marrow transplant. To add context, my role was to be the best listener possible and not influence the direction or tone at any time. These were among the few times that he was stoic. It translated into direct and pure discussions about what leukemia meant to him and his life. Sometimes the conversations were on the fly such as after a doctor’s appointment or in everyday interactions when he was experiencing a moment of pain, weakness, or confusion.

Yes, the side effects have an (s) at the end. That is because there is usually more than one of the human health systems affected by the treatment protocols that save lives. It is a given trade off that doesn’t get the serious consideration it deserves. However, subconsciously it does, although it does not rank higher than the alternative. The alternative is death and that is not a chosen option for anyone. As a care giver and the one to sign those consent treatment forms, we pray and hope for the best. We tell ourselves it won’t happen, and if it does we will fix it.

 
Joey made it clear that some of those fixes and work arounds that the doctors share or you figure out as you go along, are not true problem solvers. Instead, they are the next coping mechanism on the trip through the life that was fought to live. Joey was a true soldier because he never complained and I only saw him cry a few times. They were some of the darkest for him. This was when the coping didn’t kick in. For example, reality set in when his heart would start to beat wildly or he would be gripped by a sharp pain in his chest. After we would ride the incidents out, the conversations would start. How can we fix this? Is there a doctor somewhere that has the answer? The talks always start with questions. Finding the answers was not as easy, if they existed at all. We found tons of information on late effects but not much more than what to look for and what the end result could be.

“I just want to be normal… I just want to get a job without worrying about getting tired or not being able to lift something. Why am I so weak? Can I have a day without any pain? I miss my hair. I wish I could grow just a few more inches. I hate having to take my testosterone. Why is it so expensive?”

With each episode it never gets easier for a parent that had to make those treatment decisions. Because you are flooded with did I do the right things for my child during treatment? Then you look at your child and you know you did, because they are here. They live to inspire and offer hope that life is bigger than anything that comes along. We thank God for treatments and the doctors and nurses that administer them. Treatments are there to cure and for now they come with a price. That price is late effects.

The unfortunate late effects appear to be universal because some of the same chemotherapy agents are being used for a variety of diseases. My next post will talk about this more with a few of the most common residual side effects regardless of the diagnosis.

 
Many blessings!
-Marsha

Thanks for reading this. I want to tackle this topic in a very in-depth way. I really don’t have a particular strategy on how to do this. The rationale for this mindset is probably because this is such a personal issue for me. And in a huge way, I am still processing the ramifications or late-effects as it is called in medical circles. Late-effects are the residual scars in the form of other illnesses or conditions from cancer treatment. Through the eyes of a care giver is as close as it gets outside of being the individual experiencing a life threatening illness. Those eyes have their own sense of helplessness. But, that is so inconsequential to what a loved one MUST endure to live.

 
Children who endure cancer and blood disorders don’t truly understand what is happening to them and around them. For Myjoey, he was not told about the grave status of his health until he was almost nine years old. At that point, it was necessary because he was being prepped for an experimental bone marrow transplant. We talked about it with him driving the conversation. The gist was that he always knew something was not “quite right” with how he would feel sometimes, or why he had to see Dr. Altman so much. But, with full disclosure, it all made sense to him.

 
At this point, Joey had completed 36 months of high-risk treatment on the POG (Pediatric Oncology Group) protocol for Acute Lymphocytic Leukemia T-cell strain. In addition, his first relapse lead to a second round of 36 more months. However, during this second round of treatment he had his second relapse. The bone marrow transplant was his only hope for survival and a cure. For all intense purposes, he was a childhood survivor with a cumulative of almost five years of remission. But, it is the sustainable ones that last much longer and with five years of uninterrupted remission. In regards to this standard marker, Joey was a patient given a seven year timeframe instead. This was due to his high WBC, which was over 40,000 at the time of the diagnosis.

His initial diagnosis with a high white blood cell count or WBC dictated his protocol. This is the standard used to ensure that the right treatment of chemotherapy and other therapies are given to achieve a CURE. Chasing the cure is the main focus for parents of children with these diagnoses. The mental anguish and emotional rollercoaster is something that is hard to articulate. What was clear then and still is – is to help your child survive as you struggle to do the same. This is a club that no one was to be a member of, but one that you are forever a part of. So, you make the best of the situation. To achieve this, you live life to the fullest every second of everyday that you are given.

The psychological impact of treatment on childhood cancer survivors will be the topic of my next blog post. Of course, it will be informed by my conversations with Myjoey. I will also take liberties to give the parent perspective as well. Thanks again for reading. I hope you will return for the next installment.

 
P.S. I hope this is enlightening for all readers.