52 People You Need To Meet: #41 Sandy Perkins

What I Wish I Knew Before My Son, Sam, was Diagnosed with a Brain Tumor….

20140913-205314-75194882.jpg

My only child, my son, the light of my life, was diagnosed with a brain tumor in February, 2011 at the age of 19 and passed away 9 months later. What do I wish I had known before Sam was diagnosed? I wish I had known that once your child is diagnosed with a brain tumor, you are instantly and forever transported to a world of duality.

From the moment we heard the words “There is a mass in your brain”, we were thrust into an alternate reality, a different world that spun out of control, twisted on its axis, and irrevocably changed life as we knew it. Normal was gone. There is nothing normal about your child having a brain tumor, there is nothing normal about watching your child slowly die in front of your eyes and being helpless to stop it, and there is nothing normal about having to live every day without him! I’ve been thinking a lot about life now that I am coming up on the 3-year anniversary of Sam’s passing. I realize I now live my life in a constant state of what I have come to call “duality”, the unique ability to feel different emotions and to believe different realities simultaneously. It started with his diagnosis….

Hope and reality
Sam was diagnosed with Diffuse Intrinsic Pontine Glioma, “DIPG”, a particularly aggressive tumor with an extremely low survival rate. Less than 10% survive 2 years, and only 2% survive long term…an average survival time is 9 months! This is the reality we were faced with and lived with every minute of every day until he died.

At the same time there was hope…I thought if there is even one person who survives, then why could that not be Sam? In the face of such grim statistics, I had incredible hope that Sam would be one of the few to beat his tumor! No parent can accept the idea that his or her child is not going to survive…it is unfathomable to believe this will happen and so there is, by necessity, hope. I remember telling our friends at the cabin where we vacationed every July that chances were not good that Sam would be alive to come back the next year…..I knew the reality, I knew the statistics, and on some level I knew he would most likely not survive this tumor, but in the very deepest recesses of my heart I did not REALLY BELIEVE that my son would be gone! The dual worlds of hope and reality!

Child and adult
Sam was 19 when he was diagnosed. He was a teenager on the path to becoming an adult. He had graduated from high school, was attending classes at a community college, and was saving to move out on his own. He was not a child in the typical sense of the word and certainly not in the DIPG world, where the average age of diagnosis is 5-11. That being said, in some ways he was a child. First, regardless of age, he was MY child and would always be my child. Second, he was not fully an adult…he was still living at home, dependent on us financially, and had yet to establish a home of his own.

His first reaction when he heard the words “You have a mass” was to look to us, his parents, for help in understanding and dealing with this horrible thing. The look on his face was that of a child, a look that said “I don’t understand, I’m scared, HELP ME!” As he lost his ability to walk and to move his arms and then to eat and talk he was forced to become dependent on us to help him with the most basic of life functions just as a young child depends on his parents. And yet emotionally and mentally he was more adult than child….very mature for his age (as happens with a lot of cancer kids). He handled blow after blow from this tumor with a maturity I don’t think I could have shown. In some ways he was a child and in some ways an adult….the dual worlds of parenting a child and an adult.

Holding on and letting go
When Sam was first diagnosed I read about DIPG. I read how these children gradually lose every physical ability bit by bit until they are no longer able to walk, move on their own, eat, swallow, talk, all while remaining mentally aware of what is happening to them. I was stunned that this could happen to our children and there was nothing, I repeat NOTHING to do to stop it. I could not believe this was what was in store for Sam…how could my child, my sweet Sam have to endure this torture?? And so I hoped beyond reason that he would beat the odds and survive! However, that was not to be and his tumor did progress.

I love Sam with every fiber of my being. I could not begin to imagine life without his smile, his hugs, his gentle teasing, his ability to sense my every mood, his very presence. I hoped and prayed for a miracle, for something to stop this tumor and make him healthy again, until one day, one horrible, devastating hour I realized he was not going to get better, he was not going to be able to walk or talk or eat again and the only way for his suffering to end was for him to leave this body. And so while my heart was screaming “No, don’t leave me:”, I started praying, no begging, for God to stop his suffering even if it meant I would lose my son. How can one heart pray for two totally opposite things? Duality….holding on and letting go….the single hardest thing I have ever done!

Pain of loss and feeling love
At first there was just numbness. Then as the numbness started to wear off, I felt the excruciating, all-consuming, raw pain of having had my heart ripped out. Gradually there were times when the sharp pain receded, and instead the pain was more like an ache, intense and ever present, to be sure, but not as sharp or raw. That is where I am now. The pain, the ache is always there, but at times it reverts to the raw sharp all consuming pain. It takes my breath away and renders me incapable of doing anything other than getting through, trying to ride the wave until the tsunami subsides.

During the time between tsunamis when the pain is still there but more of an ache, I can enjoy conversations with friends, a beautiful sunset, the sight of eagles flying over our lake, the silly antics of my dog, the love of my husband and family. But during all of those wonderful things the pain is still there….it doesn’t ever totally recede. I still feel the pain in the midst of laughing and loving and appreciating nature, and sometimes the more I laugh and love the more I feel the pain.

Despite this constant pain I feel love and compassion more deeply. I love my husband, family, and friends more than I did before with a much deeper appreciation for their presence in my life. How does a heart feel so deeply this duality of intense pain and deep love at the same time?

Happiness and sadness
Before Sam was diagnosed with a brain tumor my emotions were simple. I was happy or sad, angry or pleased, content or not content. Emotions came and went, but they usually came one at a time. Now I see a picture of Sam I haven’t seen before and I am brought to tears and laughter at the same time….laughter for the joy of seeing a glimpse of him I had not seen and tears from the pain of knowing I can no longer see him in this world. I look at his drums and smile at the memories of him and his band practicing in our living room and the excitement he had when a practice session went well. At the same time I am in tears knowing I will never see that look of excitement again.

I remember lying next to him on his hospital bed holding his hand and keeping him company when he could no longer play video games or even watch TV to pass the time. It is exceedingly painful to remember what Sam endured in those last months, and yet with that pain there is a deep love and gratitude that fills my heart at having been blessed to be Sam’s Mom and share that sacred time with him. Multiple emotions now live in my heart …. It is rare to feel only one emotion at a time….Duality!

Living and not living
First let me clarify that by not living, I don’t mean dying. I’m referring more to the feeling of just existing and getting through the days until I am reunited with Sam. This is in contrast to living fully in the moment and appreciating that I am alive. This isn’t exactly a duality since it’s not really possible to do both at the same time (I don’t think) but I move in and out of the two frequently. Some days, especially when the tsunamis hit or it’s a particularly hard day, I consider it a success to have just gotten through the day and willing to try again the next day. It is okay, I believe, to have days where just existing is the best you can do. Those are the days where I drag myself out of bed feeling like I have a 100 pound weight attached after lying awake a good part of the night thinking of Sam and waiting for morning to come. But then morning comes and I can barely get out of bed (there is that 100 pound weight after all), and it is all I can do to get dressed and sit in front of my laptop, eat a little, and wait for it to be time to go to bed and sleep and hope to dream about Sam.

Then there are days when I am motivated and feel alive. Some days I just feel more at peace and more secure in the knowledge that Sam is still here with me, and I truly believe that by enjoying life and the people in my life Sam is also enjoying these things. I know I need to truly live life, not just exist, in order to honor Sam. On those days I feel good knowing I am living life “for two”. I know he understands my difficult days, but I also know he is happier when I am enjoying life. How do I know this? The same way I knew when he was having a bad day or was upset when he was here physically…a mom just knows! Living and not living…. I am trying to fully live but giving myself permission to have days when just existing is the best I can do.

Physical and spiritual world
There is no question that Sam is no longer here in the physical sense. It will be 3 years on November 14th since I last held my son, saw his sweet face, held his hand, and looked into his beautiful brown eyes. He is still the first thing on my mind when I wake up and the last thing on my mind before I fall asleep. I miss him immensely with every breath I take. Before Sam died, I didn’t often think about what happens to our soul or spirit when we die. I had a vague sense that yes, there was an afterlife but really gave it very little thought. Since his death, it has become an extremely important concept to me. I have spent a lot of time thinking and reading and praying about what happens when we die. I am convinced that life continues to exist despite the loss of our physical body. I truly believe that Sam is still alive. I believe that the death of our physical body is our birth into a new and different realm where we will be reunited with our loved ones. I believe this not because of what I’ve read or what others say but because I continue to feel Sam’s love, and I continue to feel his presence when I most need it: a sign here or there when I am feeling lost and need to be reminded he is still here or a sign when things are going well and he’s letting me know he’s happy. I am coming to realize that I will always be living in these two worlds: the physical one where Sam is no longer and the spiritual one where Sam is alive and healthy and happy. On a good day when the two worlds combine, I can feel his presence and his love and that is when I feel a little peace. The physical and the spiritual….I strive to be able to merge the two!

20140913-205237-75157481.jpg

20140910-194912-71352699.jpg

Maybe I Should Take Up Surfing

The funny thing about grief is you never really know when it is going to hit. You prepare for milestone dates, and they pass with hardly a tear shed. And then someone makes a random comment or you see a person with a certain look and BAM! You are slammed by a wave of grief right into the bottom of the ocean. Daylight doesn’t even filter down that far. You are lost, grappling for something – anything – that will point you toward the sky. It feels like forever before you break through the surface and take that first full breath again.

You bob there on the surface, treading water, and wondering how you actually managed to float again. The darkness is still down there, pulling at your feet. But somehow, your head is clear. You can breathe and the sun beams down on your face. There is promise in those warm rays, even as you can still feel the cold depths below.

I’m not sure if I’ll ever be on solid ground again. It feels like grief will never let you past the shifting sand on the shoreline. But I do know that there is always the sun. Some days strong, some days hiding behind clouds, but always there to give you a ray of hope. Maybe one day, I’ll be able to ride on top of those waves and feel the sun all the time.

People You Need To Meet #40: Margret Murphy


The story:

It started with a phone call from the school nurse, saying my son had fallen down while running in gym class. At age 13, I assumed that could be any number of things: growing feet, lack of water, the heat. Thinking nothing of it, my son continued to complain of intermittent issues – weird whooshing sounds in his ears, random projectile vomiting, and earaches. All of these are common things when a teenager goes back to school and begins picking up bugs. Normally very clean and particular, I noticed he began spilling food and leaving it, not caring. He would be completely oblivious to food on his face, and when I pointed it out, he seemed uncaring. There was more tripping and falling, and again, nothing abnormal for a growing teen.

Finally, annoyed with all, I took him to the family doctor to check his ears. She did the usual checkup, but I noticed a look of concern on her face. She said she wanted to order an MRI, just to make sure. Understanding the cost, I was hesitant, and when I received the phone call just a day later, I tried to talk them out of it. However, it was scheduled, and it was not my call, so reluctantly we went.

Halfway into the MRI, the technician came and informed me they would be injecting him with something so they could see more clearly. He had a strange look on his face. The MRI was completed, and we went to the waiting room to wait for the next test, a thyroid test. All of his symptoms led me to believe this was the beginning stage of a disease common in his family history. We were then called in to the next office, and the nurse had difficulty finding out what test to take. She called the family doctor and hung up slowly after the conversation. Looking at me confused, she said my son had been admitted to the hospital, and we were to go as soon as possible. She asked us to please go wait in the waiting room for further instructions. The phone call was received, and I was told my son had a brain tumor. He needed to go to the hospital for brain surgery ,and he would have some sort of device inserted from his brain to his stomach (what I later learned is a shunt, which helps drain additional fluid out of the brain so that it does not create too much pressure, known as hydrocephalus). In complete shock, I broke down sobbing in the waiting room, where several other patients (most likely in varying stages of cancer) stared at me with sympathy, understanding that we were now entering their world.

My son, oblivious, walked out the doors with me, making me stop to look at the beautiful water fountain with his large spacey eyes. We walked into the parking lot, and having no clue how to tell my son the news, I blurted out, “You will not be going back to school today. We have to take you to the hospital for brain surgery”. He hugged me tightly, two sobs shook his body, and he went right back to normal. We started off toward the hospital, and then I realized we probably needed to come home and get some things first. He asked for a shake, and we stopped and got him one.

I don’t recall much of getting checked in. I recall sobbing uncontrollably, while my son sat on the bed, as calm as could be, as we waited hours for the surgeon to explain the situation. Interns and nurses came in to do various prepping and stopped to play video games. The surgeon finally arrived and showed me two masses in my son’s brain. They could not operate on the tumor, as it was a risky area being on the brainstem. He also showed me a normal brain, and my son’s brain which was full of fluid accumulated because the tumor was blocking the normal flow. The surgery to create a new pathway within my son’s brain would be done rather than inserting a shunt. The remaining few days was a blur. Seeing my son with a tube stuck in his brain from outside his head and connected to various machines was a mother’s worst nightmare. No ability to sleep as I lingered on every machine’s beeping, or slowing of beeps…or stopping. Those were the worst, when teams of surgeons and nurses came rushing in to check that everything was okay. Finally, the removal of the tube from his brain indicated the end of the emergency. While testing my son’s ability to walk on his own, he leaned on me as we walked down the long hallway. I cried, as the reliance of leaning on me to walk at the age of 13 brought back memories of similar happy events when he was learning to walk in his younger years. We were released, and he healed (physically) back to almost normal within a couple weeks.

What I wish I knew before diagnosis:

Later I wished I would have recognized the deep, strange feeling I now know was my sixth sense telling me something was wrong. I wish I would have known the symptoms, when combined, were premonitions of something very serious. I wish I would have taken my son’s complaints more seriously.

Guilt: These are similar feelings of every parent, which can turn into guilt. I wish I knew before diagnosis that there is no way I could have known, and that while guilt is a natural response, it is something that needs dealt with in a healthy manner as soon as possible.

Being your child’s advocate: I wish I would have known afterward that rather than waiting on the hospital staff to call me, I would need to manage this ‘project’ myself. With appointments crossing various hospitals, HIPAA laws and communication between locations is limited. I would need to document the appointments and results, keep copies, and ensure the next doctor had that information.

Take care of yourself: This can be challenging as a sole caregiver. And if you are as stubborn as I am, you will think that you can do it all without help. You must lose this mentality and let others help.

Notice a majority of ‘what I wish I knew’ is all about me? My son and his diagnosis are in God’s hands. I cannot control it, although advocating, being aware, and demanding great care is a part of my role. This is exactly why you need to take care of you – mentally and physically. Without strength in those areas, you cannot be a healthy caregiver. So if you are a caregiver, reach out to others so you can have time to strengthen yourself.

What can you do to support:

If you know a caregiver and they are as stubborn as I am – don’t ask if they need help, because they do. Bring them dinner; tell them you are stopping by for a couple hours so they can get out of the house, help them sort through the piles of medical bills and make the calls needed to coordinate payments. If you ask, they will likely decline, so make a plan and just do it.

As much as you are able, support brain tumor awareness and research by donating to one of the many great foundations. My personal loyalty lies with the Dragon Master Foundation and the National Brain Tumor Society because they are doing great things. There are many others as well. Research is extremely underfunded for brain tumors so every little bit helps. Look for events in your community that support brain tumor research.

20140906-103453-38093526.jpg

I Had A Dream…

Last night I had a dream about an adorable little boy. It was not a child I knew, but I fell instantly in love with him. His mother was unable to care for him, and ultimately he came to live with Richard and I.

He was precious, and we were happy to have him with us. And then suddenly, he couldn’t walk. They told us he had DIPG. And I knew that this little boy we loved would be taken from us far too soon.

They say your dreams are your subconscious trying to work out a problem in real life. To me, this dream meant that even though we really did lose a child to brain cancer, we still feel the emotions of each new diagnosis. Those children are our children. We still fight with that kind of passion, but the key is helping people understand they need to join the fight BEFORE it really is their child.

You’ve seen those commercials, the sick child in the hospital over the holidays. You are thankful for your healthy kids and so you donate. I used to do that, too. And we would contribute to Make-A-Wish and other charities that helped those kids and families. They are good at what they do. But doing what we have been doing for years is not getting us the cures we need.

We want to take the research community and give it a turbo boost. Parents, think about the days when you were in high school. To complete a paper for school, you had to go to a library, look things up on little paper cards, go find a book (that you prayed would be shelved properly), and dig through that book hoping to find the info you needed.

Today’s kids do a quick search on the internet for exactly what they are looking for, and they have their source in moments.

Cancer researchers are stuck in the “library”. They only have access to the info at their local branch, and sometimes the filing system isn’t great. If they have a new idea, the information they want might not be there at all.

We want to change that. We want to build an internet “library” for researchers that will have every piece of information they are looking for. It will be categorized properly, quickly accessible, and updated daily.

We’ve got the foundation. It is housed at the Children’s Hospital of Philadelphia and it currently has genomic and clinical data for pediatric brain cancer patients and their families. Records are being collected from four hospitals right now, but we want more! We truly want this to be a collaborative tool that will help a multitude of researchers at multiple hospitals.

But a resource like this costs a lot of money, and traditional funding sources are inadequate. That’s why we need you. There is nothing that Americans can’t do once they set their mind to it. The ice bucket challenge proves that millions can be raised very quickly, given the proper incentive.

We love our individual donors, and they are a loyal bunch. However, we need to multiply our donors if we are going to truly make a difference. That’s why the #whippingchildhoodcancer challenge is so cool. It isn’t a huge monetary commitment, but it allows you a forum to talk about why you are giving. It can inspire others to do the same. And before you know it, hundreds, or even thousands, of people know about the database and why it is important.

So if you haven’t done it yet, please consider taking a pie to the face for childhood cancer awareness. And make sure you let me know if you do it for Dragon Master Foundation so we can post the video!

P.S.
I know that not all of you are on social media (ahem, Danny!) so here’s a brief recap of the #whippingchildhoodcancer challenge:

Our aim is to raise awareness around the 46 children diagnosed and 7 lost every day to pediatric cancer in the U.S. You have 46 hours to complete the following challenge. You must record a video of yourself taking a pie to the face (can be a paper plate with either whipped cream or shaving cream). Once completing the challenge you must choose a pediatric cancer charity to donate $7 to and tag/challenge 7 friends (46 if you’re feeling bold!) to make their own pie in the face video. If you’re unable to complete the challenge within 46 hours, you must donate $46 and tag/challenge 7 friends.
Be sure to explain the 46/7 statistic in your video. 46 kids diagnosed every day, and 7 die from pediatric cancer.

September

20140901-194736-71256231.jpg

Four years ago today, life changed. Fitting, I guess that it all started in September, which is Childhood Cancer Awareness Month.

I can’t say I was completely unaware of childhood cancer when David was diagnosed, but I guess I thought it was treatable. After all, those St. Jude commercials always showed kids recovering, right? I thought that you just needed to fight hard or travel to the right hospital and it would all be fine.

The reality is that there are a lot of kids that not even St. Jude can save. So we fight. We fight with the doctors and researchers and against a disease that steals our youth. Through Dragon Master Foundation, we look back on the 4th year anniversary of David’s diagnosis and see some real progress
toward our goal. But we are far from done.

We are excited to see profile pics going gold this month, and we are so encouraged by the people who have joined us in helping to raise awareness. We are On Fire For A Cure!

People You Need To Meet #39: Andie McConnell

FGP logo

What I wish I knew before my friends’ son got brain cancer… This may seem a strange twist on the theme of these blog posts but I wish I knew my friends before their son got brain cancer. When I met them, their son had been in remission for a couple of years, but the pain over what they experienced was still raw. As I got to know the couple, she spoke of the experience of facing cancer with a child and the disappointment in the friends who disappeared during this difficult time. So in addition to the fears and grief that come with a child facing cancer, she spoke of the loneliness and the struggles as a family. She talked of how people they believed would stick by their sides did not, and that some people they didn’t expect to help, did.

Her words really resonated with me, as did her talk of the pain of watching a child go through cancer treatment. Hearing their struggles made me wish that I had known them and had been able to be there for them during their journey because I knew I would have been one of the ones who stayed around to help. I thought of ways I would’ve helped to lighten the load on them, how I would have been there to listen, to help with meals, their house and anything else they couldn’t quite find the time to do. Years later, I met a family with a child with a new cancer diagnosis, and my friend’s words about the loneliness of pediatric cancer rang in my ears.

I decided to make an effort to help them through fundraising and emotional support. Looking back , in some ways I realize I did it to make up for not knowing my friends before their child got cancer. As this family’s child reached the end of treatment, I realized there just might be a real need for support of other families facing pediatric cancer. I surveyed families and found there certainly was a need. I brainstormed how best to provide this support, and it evolved into what is now a nonprofit based in Fredericksburg, VA that focuses on the needs of the parents rather than the child. We provide meals, house cleaning, lawn care, hair cuts, gas cards, a financial relief fund and emotional support to the parents in order to relieve some of their stress and to provide them with more time to focus on their family. I wasn’t able to support those friends during such a difficult time because I didn’t know them, but now my organization provides support to families in parts of VA and MD with similar struggles. We fill the void of the friends who, for whatever reason, are unable to help and for the friends they have yet to meet who will wish they had been there in such a difficult time.

Editor’s note: You can learn more about Andrea’s nonprofit, the Fairy Godmother Project, by checking out her website: http://www.fairygodmotherproject.org/

It’s Kind of a Big Deal

Wish I knew who to credit for this pic because it is awesome.
Wish I knew who to credit for this pic because it is awesome.

We get a lot of questions about Dragon Master Foundation, and whenever I have the chance to talk to someone about it, the response is amazing. They always end up saying “Wow, that’s such a big deal!” People are so generous with their support once they understand the project. The problem is, a lot of people don’t understand what we are doing and why it is needed. So I thought I’d take a moment to explain a little bit about what makes this project so special.

When David was sick, we were inside hospitals for days at a time watching people do their jobs. Technology is everywhere – from the patient bedside to databases in some unseen corner of the building. However, all of that technology seems to be locked inside each institution, with very little ability to share information from one hospital to the next.

It is like  being a horse with blinders on. You can only see a small part what’s really out there. You get a myopic view of the world. Unfortunately, that is the world most cancer doctors and researchers face. They long for more information, but it is largely out of their reach.

You may be thinking, “But what about the internet? Can’t they just send their information back and forth?” The short answer is no. Between HIPAA, different technology formats, and the sheer size of data, even the most collaborative hospitals have trouble sharing all the information researchers want to access. Collaboration would mean that a database would quickly need to warehouse petabytes of of information – a task that has only been tackled by the likes of the NSA or Google in the past.

It is an overwhelming task, to be sure, but for the first time in history, it is possible. It is possible to house genetic information and clinical data in one place so that researchers can really see the “big picture” of a patient’s health and furthermore, they can compare that patient to other patients. They can start to see why a drug works for one patient and not another. They can start to make sense out of things that are seemingly random.

It will be four years this September since we were dropped into this cancer world. I’m not a doctor or a researcher, but I’ve talked to as many as I could over that time, and every one of them has said a database like this would be an asset to them. EVERY ONE OF THEM.

And yet, we continue to spend money on tiny projects that help a single researcher or a single hospital. Please don’t misunderstand. Every researcher needs funding. Every hospital needs more help. But this is a situation of not being able to see the forrest for the trees. We need to build an infrastructure for the research data if we ever hope to move at a pace that is faster than cancer.

The good news is, we have made amazing progress. We have joined forces with the Children’s Brain Tumor Tissue Consortium, Children’s Hospital of Philadelphia, Children’s Hospital of Pittsburgh, Chicago’s Lurie Children’s Hospital, and Children’s Hospital of Seattle to take the database they are working on and grow it to a scale that can help pediatric and adult patients. The data is already being collected, which is a great and wonderful thing. However, it means that we are already at a place where we need vast amounts of funding in order to continue to grow.

I wake up every morning more sure that this database will change the way they do medical research. I have hope that people will begin to understand the vision that that this database represents, and that they will focus on helping us build it. You ABSOLUTELY CAN make a HUGE difference in the fight against cancer. Please share the mission of Dragon Master Foundation. Like us on Facebook ( http://www.facebook.com/DragonMasterFoundation ). Follow us on Twitter (@dragonmasterfdn and/or @amandahaddock ). Host a grass-roots fundraising event. Something as simple as dining out at a local restaurant that will donate proceeds can be a huge help with both raising money and raising awareness. Cancer is a beast that is taking lives. You can be a dragon master. Please join us today!

Follow

Get every new post delivered to your Inbox.

Join 2,151 other followers

%d bloggers like this: