Do you watch The Voice?

Tonight I was watching The Voice and listening to these young people talk about pursuing their dreams. It’s a fun show, and I really get inspired listening to them talk about their goals. But today I got to sit in a room and listen to cancer researchers talk about pursuing their dreams. Talk about inspiring!! I wish that each of you could be there and hear what they have to say about their work.

I wish that the world chose to really get their priorities straight. I wish that instead of rock stars, we were watching cancer researchers. I wish that they got the recognition and the “buzz” that celebrities get. I know that this isn’t a switch that is likely to happen anytime soon, but still, I hope that the folks reading this blog will get excited about what I’m going to share.

In today’s meetings, we were asked to help put together a pilot program for the database they want us to build. Using their data and developing computational power, we want to pilot this program that will allow them to share data and work together toward a cure. They have asked us to start with DIPG and GBM – two of the most deadly brain cancers.

These are some of the smartest people I have ever met, and they are asking us for help. To be more clear, they are asking for YOUR help.

They can’t depend on traditional funding sources for this. Grant funding is very limited, and most grants aren’t structured for programs of this scale. The funding sources they have access to traditionally want to see results before they will fund programs.

So they need us – all of us – to help them find this pilot so they can show some results and get further funding. Every one of us has the power to do something big here. Really big. You may think you don’t have much to offer, but you do!

If you have read this message then you have the power to help us meet our goal. Please share this blog. Then think about ways you can make an impact in your community. Can you hold a bake sale? A car wash? A Zumbathon? Whatever it is you like to do, invite some friends to do it with you and raise a few dollars.

If we all do that, we can make thousands of dollars to help these researchers change the way research is done. This is bigger than me. It is bigger than you. It is the sum of all of us, and together we can change the world!

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There Are No Easy Days

I believe it is the Marine Corps that says, “There are no easy days.” They know what they are talking about. They are either at war or preparing for war. Sometimes it feels that way when you are the parent of a child with cancer. Or when you have lost your child to that disease. There are no easy days.

Yesterday, I watched in awe as my friend, Vashni Nilon, came to a 5k without her sweet daughter, Lucy. She came because they had been building this team for months, and even though Lucy died just a few days ago, Vashni knows this battle is not over.

This team of walkers grew from about 20 to about 150 because of the efforts of two moms and a dedicated staff. There were doctors and hospital staff sprinkled throughout the crowd. Everyone doing their best to make a difference.

One doctor shared with me that he had been up by 4:30 am each day this week so he could work on grant proposals before heading to the hospital. Another’s wife mentioned that not only does he respond to patient needs in the middle of the night, but also was on call for lab equipment failures. (Tumor tissue samples are precious and he takes personal responsibility for their safety.)

A staff member shared that her kids are “regulars” at the hospital because she has been working 7 days a week. There is no lack of passion here, but yet our children are still dying.

So what do they say they need? More computational power. More data storage. More manpower to input the records. What does that really mean? More funding.

We are in a day and age where computational analytics could be a powerful tool, but most researchers don’t really have access to that kind of power. Dragon Master Foundation aims to change that, but we need your help.

We need a nationwide effort to raise money for a research database. There are currently four leading children’s hospitals participating, and we want to add more! Please get involved today, and help us give everyone hope for easier days.

You can make a tax deductible donation to Dragon Master Foundation by clicking here: http://www.dragonmasterfoundation.org/get-involved/#donate

Or by mailing a check to:
Dragon Master Foundation
8201 East 34th Street N., #801
Wichita KS 67226

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People You Need to Meet #44: Stephanie McMillan

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What I wish I knew before my child was diagnosed with brain cancer??

I wish I had known how precious time was. I wish I had realized how little that mess had mattered, how quickly time passes by, how precious every sound from his lips could be.

Though his whole life we were on the go, enjoying life, but it wasn’t until my son was told that he mostly likely wouldn’t survive this that we really began to live. October 4, 2012 will forever be etched in my mind as a day that the world stopped turning at the same rate of speed.   From that day, life became before and after.

Before Richard was diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) we spent our weekends going to the park, visiting the local lake, swimming from sun up to sun down. I wish I had known how precious that time with him really was. I wish I had soaked up every minute. The thing is, as parents, we tend to busy ourselves. Even when taking our kids to a park, we use that time to socialize with other parents, or to send those all so important work emails. Looking up every so often to make sure we can spot our child, then right back to what we were up to. How many times did I take my kids to the park only to sit on a bench the entire time?   How many of our trips to the pool or lake did I lay on the side line the entire time working on my tan rather than splashing around with them? Yea, I got up and played with them, when I got too hot to continue lying there, and needed a break from tanning my skin. There were many times that I did this with friends and spent more time laughing and cutting up with them, rather than playing with my kids. If I had known then that my son would die at 9 years old, I have to believe that I wouldn’t have cared one bit about my tan lines, or sending that work email. I have to believe that I would have gotten off my butt and played with my kids. I would have spent every single second soaking them in. I would have let the dishes lay in the sink and played with them before bedtime.

So often in our busy lives we wake up determined to keep ourselves on schedule. We get upset with our children when they take too long to put on their shoes. ‘UGH….get up, I’ve called your name three times… if I have to call your name one more time you’re going to be in trouble.’ I have to believe that had I known that our lives would change completely when my son was 7 years old, I would have spent every morning waking them up slowly with snuggles. Giggling while we played games to get dressed. I have to believe that I would have gotten up earlier to make sure we had time for things to go wrong, or us to fall behind schedule. To enjoy that morning rush with my kids rather than just march them into the day with one …two…. three, let’s go.

As adults we become so consumed with our careers. I wanted to travel every chance I was given with the company I worked for. I was working hard to hopefully become a District Manager some day. Had I known when I was busting my hiney to climb the corporate ladder that my life would change, I would have left work at work. How much money I earned wouldn’t even matter anymore! So often I brought it home with me. After working 12 hours, I’d come home and take calls or send emails, pushing my kids to the side so that they could entertain themselves. I have to believe that if had I know that my son wouldn’t ever turn 10 years old that I would have worked fewer hours, and I would have let work handle itself when I was home with my family.

I ask myself often, why did that matter so much to me? Did they miss me when I left? You see for me, it wasn’t my business I was working to grow. I was working in a corporate job that I loved, but while I want to believe I was a valued employee, I was just a number and quickly replaced. Life moves on, and they needed the job done. Meanwhile, what was waiting on me at home was a position that was irreplaceable. I was the CEO of the most important job in the world. However, I didn’t place that job description high enough in my list of importance. Don’t get me wrong, I needed to earn a living. I needed to pay for the fun I took my kids to enjoy, but I, like so many other parents, put the value of the corporate ladder before the quality of time my family got from me.

Before my son was diagnosed with brain cancer I wish I had realized how little the opinions of others really meant. I’ve always worked hard to be a likeable person and be easy to get along with. When relationships failed, as they often will, it would break my heart. I would spend so much of my energy worrying over what went wrong and how I could have changed the outcome of that relationship. If a “friend” had the wrong idea about who I was or what my agenda was, I spent way too much time trying to get them to see things from my perspective. I wish I had known none of that would matter. You see during my son’s fight for his life, we made his journey public. I wanted people to see what life was like with living with a child with cancer. By doing this I made myself and family vulnerable to the opinions of others. It didn’t take long for people to question my agenda and say hurtful things. I wish I had known then how little those people’s opinions mattered when it was all said and done. People will tell you what you should do, or how you should do it. They may question your every move. What I am glad that I know now, that their opinion of me is none of my business. All that matters is that everything I did/do is for my children.

My son died one week and three days shy of his 23rd month anniversary from being diagnosed with DIPG. He beat the odds and survived much longer than initially expected. From the moment he was diagnosed until the day he died, every ounce of me was poured into him and my other children. I will forever be a person who doesn’t care if there is a mess laying around in my floor, as long as I am taking that time and focusing on what is important….my family. I am thankful Richard’s fight taught me these things. I wish I hadn’t had to experience childhood cancer to learn that lesson. Please, hug your children. Please evaluate your life, and think, if your world was flipped upside down today, what would you forget about in order to be what your family needed? Every minute counts in life, and I promise you, if you’re aligned as you should be, when it’s all said and done all that matters is your family.

People You Need To Meet #43: Karin Forbes

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What do I wish I knew before my husband was diagnosed with brain cancer? I’ll tell you what I’m glad I didn’t know, because these things are too horrible to know in advance, and knowing these things wouldn’t have helped in this horrific journey…

I certainly wouldn’t have wanted to know how quickly he would  lose his ability to talk, to move, and to eat or drink.

I wouldn’t have wanted to know that he may not have been able to see or hear.

I wouldn’t have wanted to know that he would be told no hope, that there was nothing anyone could do.

I wouldn’t have wanted to know he would be suffering seizures, or about the many, many hospital visits.

I wouldn’t have wanted to know that I would have to make life decisions for him that doctors didn’t trust he could make.

I wouldn’t have wanted to know that that my love who didn’t take so much as an aspirin, would be taking long lists of ever changing  medications.

I wouldn’t have wanted to know how this strong man, who took such good care of himself,  would bloat, and have reactions from medications.

I wouldn’t have wanted to know all the nursing skills I would have to perform with on the spot training.

I wouldn’t have wanted to know how my heart would be ripped apart watching the man I loved suffer and wither.

I wouldn’t have wanted to know that I would see his beautiful eyes fill with so much sadness as he knew he was dying.

I wouldn’t have wanted to know that his life would be over long before his death.

I sure wouldn’t have wanted to know I would lose my husband, my children’s father, my best friend, my confidant, my everything, my world, five months from diagnosis.

I wouldn’t have wanted to know we would never hear, see, or feel anything about him,  ever again.

I wouldn’t have wanted to know the enduring pain to my very core.

I wouldn’t have wanted to know that this man who worked hard every day of his life, would never see one day of his retirement, or one of our retirement plans come to be.

I wouldn’t have wanted to know that our family life as we knew it, would be soon be over.

I wouldn’t have wanted to know my children’s pain from the loss of their dad.

I wouldn’t have wanted to know that some would  add to our pain with words or acts or lack of either.

I wouldn’t have wanted to know the greed some would have after the death of my beloved.

I wouldn’t have wanted to know how some would disappear after his death.

I wouldn’t have wanted to know that my future entailed widow fog and being unable to concentrate.

I  wouldn’t have wanted to know that I would lack desires and no longer love life.

I wouldn’t have wanted to know that I would have post traumatic stress.

I wouldn’t have wanted to know that my health would suffer, and I’d be badly hurt in an accident, or that accidents are common among the grieving.

I wouldn’t have wanted to know the long duration of grief,  and depression I would endure.

I wouldn’t have wanted to know because I needed hope to fight for him. If I had known these things, I would have been too distraught  to function. If this horrific  journey had been given to me in black and white print, I still could not have known the depths of this nightmare. I had to believe in a miracle; I had to have hope.

How I wish that I and the others who suffer had never heard of brain cancer because there were no such thing.

There is one thing I wish I knew…
The one thing I wish I knew was that I didn’t have to be so alone with this. There are online groups of people who share this grief, some are now fighting this monster. They give each other encouragement, love, and knowledge that I so needed in this terrible time.

I now belong to a group of women caregivers who are all on,  or have been on this same terrible road brain cancer takes us down. It’s heartbreaking because I know what they are going through.
I also know that unlike me, they aren’t alone because we band together for each other. We are special Warriors who all wish we had never been in this horrific battle.

Did I learn anything on this horrific journey?
I already knew the depths of our love, and that we would die for each other. I knew of his strength and his heart. We had found out long ago that material things just don’t matter. How blessed we were to have each other and such a deep love! We already cherished every day together.
We didn’t need illness to bring that realization.

I learned that GBM is horrific beyond words, not at all rare, and a thief of the very worst kind.

52 People You Need To Meet: #41 Sandy Perkins

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

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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!

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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.

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