52 People You Need To Meet: #15 Lavanya Scott

 What I wish I knew before my son was diagnosed with brain cancer…

Nothing. Nada. Zip. Not a damn thing. Like the country song goes, “I wish I didn‘t know now what I didn’t know then”. There is not one thing I have learned along the way that I wish I knew before my son was diagnosed with Glioblastoma Multiforme (GBM), an incurable brain and spinal cord cancer.

I can’t say I wish I knew how lucky I was or that I appreciated my son more. I knew. I was a good Mom. I don’t care if it sounds immodest, I was a really good Mommy. My son had so much love. He was my focus; he was my joy. I knew how lucky I was.   I still got a little thrill every morning when he woke up, just because I got to see him and hold him again. I cried tears of happiness playing on a blanket in a park when he was eight months old. I tried to imprint every detail of that day in my memory, knowing it was my version of Heaven. I cried again at the library playgroup we joined when he was two, and I was laid off from work. I was so happy that I got to stay home and just be his Mom for a while. I knew how lucky I was that I had a child to do these things with. I can’t say I wish I didn’t take him for granted. I didn’t. I knew how lucky I was, how blessed to have this beautiful child in my life. I can’t say I wish I had my priorities right. I had them right.

I wish I didn’t know now that a child is diagnosed with cancer every three minutes worldwide, that seven children in the US die of cancer each day, that brain cancer is the leading cause of childhood and adolescent death by disease, that the incidence of invasive childhood cancers has increased by 29% over the last 20 years. I wish I didn’t know that childhood cancer research receives only 4% of federal funding for cancer research, that less than 5% of funds raised by several major cancer charities is directed to pediatric cancer research and that only two new pediatric cancer drugs that were initially studied in children have been approved by the FDA in the last 20 years.

I wish I didn’t know now that some childhood brain cancers are considered incurable. Although overall 5 year survival rates for pediatric cancer have increased to almost 80%, rates for pediatric brain tumors such as Diffuse Intrinsic Pontine Glioma (DIPG), Gliamatosis Cerebri and GBM are still close to 0%.

I wish I didn’t know now that when parents are given the diagnosis of these cancers, they are not offered hope for a cure. All that can be offered are the options of no treatment or palliative radiation and chemotherapy. Tough treatments that may or may not help with the symptoms and extend their child’s life a little longer. I wish I didn’t know how hard it is to live in a hospital for weeks and months on end. I wish I didn’t know how to take care of a critically ill child at home, to give tube feeds and IV meds, to deaccess a port, to use a suction machine and a pulse oximeter. I wish I didn’t know that childhood cancer isn’t all smiling kids with bald heads running around chasing rainbows and butterflies like they show in fundraisers. I wish I didn’t know that some kids are just too sick to leave the hospital or too sick to leave home most days, let alone take a Make-A-Wish trip.

I wish I didn’t know how to get a four year old ready for Heaven. I wish I didn’t know that you help him pick out his favorite clothes, a stuffed animal and a blanket and pack them up in his backpack. I wish I didn’t know the words to tell him that he won’t have stupid tumors in Heaven, and he’ll be able to talk and eat and walk and run again. That he will have a dog to play with and great-grandparents who will take good care of him. And a brother or sister who didn’t get the chance to be born. That Thomas the Tank Engine and Percy will come to his house to take him to Heaven. That it will be like going to daycare, Mommy and Daddy will hug him and kiss him goodbye, and he will play for a while but then we will go to Heaven to scoop him up and we will all be together again.

I wish I didn’t know now that parents of a child with cancer suffer from Post Traumatic Stress symptoms at alarmingly high rates. I wish I didn’t know that caregivers and even the doctors are haunted by their decisions, even when they were the right ones with the information they had at the time. I wish I didn’t know the beast that grief is. That the flashbacks, the despair, the pain would be so consuming, even at six months, a year, two years, and beyond, I am beginning to think forever. I wish I didn’t know that time doesn’t heal all wounds.  

I am glad I didn’t know any of this before. I wish I didn’t know it now. I wish no other parent had to know it either.

Editor’s note: Every week, it is hard for me to keep my commentary out of these posts, and this week, I just really needed to add something. Before my child got cancer, I think I always sort of thought that something “went wrong” with the kids who got cancer. You know, maybe their parents didn’t make them eat the right foods, or didn’t seek treatment fast enough, or didn’t take them to the right hospital. Horrible, horrible thoughts, but I always thought if it was MY kids we would fight harder. We would find a way to win. But we didn’t. And like Lavanya so eloquently illustrated, no amount of love can save your child from cancer. I was arrogant before David’s diagnosis, thinking that cancer didn’t run in our family so we were safe. NO ONE IS SAFE. Please get involved in the fight against cancer now – before it is you or your loved one suffering. You will never regret trying to help save someone’s life. If you don’t know what to do, message me and I can help you find a way to get involved that will mean something to you.

#BrainTumorThursday

It occurred to me today that when I was new to this world of brain cancer, it was quite an overwhelming place. With the internet, there are countless resources out there, but it is very hard to know where to really connect. So today, #BrainTumorThursday, I thought I would address a couple of ways to connect with others in the brain cancer community.

First, there are two hashtags that are quite popular on Twitter for brain cancer. The first is #BrainTumorThursday, and each Thursday, people will post about brain tumors. The second is #btsm, which stands for “brain tumor social media”. People who are passionate about the cause use these hashtags, and even “meet up” one Sunday a month on Twitter to talk about issues.

On Facebook, there are quite a few groups that deal with very specific tumor types and are geared toward survivors and/or caregivers. Search under specific tumor types (GBM or DIPG, for example) or just type in “brain cancer”. You will find others who are fighting similar battles, and the at large “brain cancer family” is a very supportive group.

On Pinterest, there is a growing movement of brain cancer awareness. It’s a good place to find some images to use during brain cancer awareness month (May). I’ve posted some images here: http://www.pinterest.com/haddock/brain-cancer-awareness-dragon-master-foundation-sp/

I know that there are people active on other social media sites as well, but I’m not as active on those. lf you have some good social sites/pages to share, please post them below.

Lastly, there is a movement very dear to me by my good friend, Alex Moore, to raise money for his film about a brain cancer survivor. I re-blogged Alex’s post about his film, but I wanted to mention it here because I think it will be such a valuable resource for families. A survivor himself, Alex will be able to tell the story in a way no other storyteller could do. I’ve had the privilege of reading Alex’s tribute to lost warriors (my son included) along with the stories of hope he has encountered along his path. I hope that you will check out his project and consider sharing it with others who would like to bring awareness to brain cancer. You can read about the project here: http://www.gofundme.com/aimoore

People You Need To Meet: #14 Stacie Guirguis

Basil bfore_after

December 24th, 2006. Our son was only 4 months old. A normal annual physical, landed the love of my life in the ER. After a urine test and some blood drawn, he was asked to go for an MRI of the brain because for some reason his PH Levels had sky rocketed. With not an ounce of fear, he did this and before the MRI was complete, they sent him to the ER. He had no symptoms. NOT ONE.

Four hours later, after many faces of many doctors, nurses; after many “I am so sorry you are going through this”, “what a young couple”; a doctor…very tall in stature, calming, yet gracious face holds out his hands for mine, but not wanting any comfort, I put mine in my pocket.

“You have a brain tumor. Two, actually. One the size of a melon in the left frontal lobe of your brain, The other on your brain stem.”

Silence. My legs became weak. My head heavy. My heart stopped. What? “Ma’am, I am so sorry. Your husband has brain cancer.”

Basil lived graciously with brain cancer for 6 years. His first craniotomy was grade 2, his third proved to be the deadly GBM. Offered only 15 months to live, he never believed ONCE he was going to die. But he passed away only 14 months later, as I lay next to him, spooning the man I said I would grow old with. His last breath was an exhale…and as I waited for that inhale, I felt his presence leave. Forever 38. He left behind two beautiful sons. Evan was 6, and Shane just barely 2. Rest in Peace my love. 5.31.2012

 

“What I wish I knew before my husband was diagnosed with cancer.”

Faith. It comes and goes. I prayed and prayed. At times, as much as I prayed is as much as my faith was tested. Sometimes I would walk away from it. Sometimes I would submerge myself in it. Sometimes I would hide behind it. Faith can mean so much and so little at the same time, if you have no belief that there is a bigger and better out there. Every time I lost my “faith”, I was reminded that I had 2 little blessings I called my sons and I was grounded again.

Numb. I was numb for almost 6 years. Numb was all I could feel. It was like a blanket that held me together, one that I wish I could have seen before I lost my husband. Being numb, hardened my marriage yet broke the intimacy; it shrunk my faith and suffocated my fears. Numb also protected me and provided my life with a pre-conceived strength I thought I had during those 6 cancer filled years.

Friends. I needed them. Family. I need them more.   My family was taken care of while I nursed my husband in his now infancy stage –washing him, hold his head up for food, while I sang him his favorite songs, terribly…while I brushed his teeth and cleaned his messes. Family and friends came. They provided smiles for my children, they made sure food was on the table and that homework was done. My house was clean and my dog was let out. Family and friends, see your darkness, they feel your pain and without asking know your weakness. They just showed up. I love them and owe them more than a “thank you” will ever encompass.

 

Lessons to pass on:

Let go. Let go of the things that weigh you down. Trust life. Sometimes answers are not what we need.

Breathe. Really breathe, though. Take a deep breath and remember that blessings surround us daily.

Smile. My husband always said. No matter what smile. Even if you aren’t happy. Smile. Smile at a stranger, a passerby, it confuses people, and it feels good.

Stop comparing. In hindsight, I would always ask, “Why me?” My friends aren’t going through this. Why me? Why? Because shit happens. Work with the time we have. Every moment is a gift. Some people aren’t even given time.

Love endlessly.

Hug more.

Sing in the shower, even if your kids tell you that you sound like a man.

Dance. I mean really dance. Like you think you can dance.

Have a drink. A stiff one or a favorite one, yummy one at least once a week ;)

Have compassion.

Hold your husband’s hand. That simple gesture sparks something irreversible every time you do it. And it’s always an irreversible good spark.

Always say I LOVE YOU.

Never, ever go to bed angry.

I have been a widow for almost two years. I wish I said I love you to him more. I wish I held his hands more and remembered his scent. Nothing prepares you for cancer. Nothing. It’s a journey that takes its toll and manages to change you. My heart breaks daily for my boys who will probably forget how their dad held them, how their dad hugged them and told them how much he loved them. His legacy lives on through them…it’s a continual gift my husband has left me behind.

Finally. Be GRATEFUL and show grace. Gratitude carries you through, and grace is your guide.

Cancer. Brain Cancer. Death. “What I wish I knew before my husband was diagnosed with cancer.”—I wish I knew a cure. I will love you forever, Basil. Always and forever 38.

Editor’s note: Stacie was kind enough to share pics of Basil, and we decided to show him before brain cancer and a few weeks before he died. To me, his eyes tell a story none of us could put into words.

 

52 People You Need to Meet: #13 Stacey Gravina

What I wish I knew before my son was diagnosed with brain cancer…

StaceyGravina

On July 27, 2011, after fifteen days, three hospitals, a CT scan, medically induced coma, intubation, an MRI, a spinal tap, a craniotomy… we received the diagnosis: Brain cancer ~ Gliomatosis Cerebri with Anaplastic characteristics. Gliomatosis Cerebri = a rare brain cancer that is highly aggressive and very resistant to treatment. These malignancies are not lumps like other tumors, but cancerous threads that spread very quickly and infiltrate deep into the surrounding brain tissue, or into multiple parts of the brain simultaneously, making them very difficult to remove with surgery or treat with radiation. Gliomatosis cerebri is extremely rare, with fewer than 100 cases diagnosed in the United States each year. Anaplastic = A term used to describe cancer cells that divide rapidly and have little or no resemblance to normal cells. And the prognosis = 6 months to a year.

One year and four days from that day, my beautiful, energetic, full of life, silly, fun, compassionate, loving 8-year-old little boy was gone. At that point all of that medical jargon really didn’t matter anymore. The 12 months of searching for a cure, trying everything that we came across that we thought might help him even a little bit, traveling across the world to Germany for one final attempt at a cure… none of that mattered.

On Tuesday, he should be turning 10 but instead on Tuesday, it will be 20 months since he went to heaven. Before he was diagnosed with brain cancer, I wish I had known he would never be 10… not even 9…

I wish I knew the value of every moment of every day and how we should have taken advantage of that before and after he was diagnosed. We did celebrate him and share him and our journey with the world… or at least as far as our world reached. But we also spent a ton of time trying to save him. That’s what a mother does, right? We are supposed to protect our children and make it all better… no matter what. I can’t imagine doing it any other way but at times wish we had. I might trade some of the time it took to get him to take his many pills, which included many natural supplements, with some cuddle time (although he took them like a champ). I might play a game instead of trying to get him to drink his “green drink” or eat his Budwig protocol concoction (not so much a champ with those). I might keep him in the comfort of his own home surrounded by his friends and family instead of flying him to Germany because I just couldn’t give up hope that there was a cure out there. Or maybe if given a do-over, I would do it all the exact same way because how can you not do everything you possibly can to try to save your baby? They say hindsight is 20/20 but I’m no clearer now on what happened, or why it did, than I was on July 27, 2011. In fact, I feel more lost than ever. I wish I knew that I would go in circles over things like this and that as soon as I was comfortable with the decisions we made, I would start all over again with questioning everything we did.

I wish I knew how others would deal with my grief. It is true that you find out a lot about people when you go through something like this. It is truly shocking who is there through it all and who disappears. In your greatest hour of need they just disappear… Some people that you never thought would be there, step up to the plate and some people that you expect to be there, just aren’t. We make them feel uncomfortable, they think we need to move on or they just don’t realize how much we still need the support. I am sure I’m guilty of this because I didn’t always know how it feels. And even now that I have faced the worst thing that could happen, I don’t always know what to say to other moms in my position. Through this you definitely see true colors… it is eye-opening and somewhat freeing. I wish I had known.

I wish I knew that people would avoid talking about him. That it would feel awkward to talk about him in front of some and that I would have a need to seek out those who would listen and equally enjoy hearing his name. I wish I knew that most people who will ask how you’re doing won’t really want the truth… especially if it’s more than six months out. I wish I knew I would have to work daily to keep his memory alive, to continue parenting him, to develop my new relationship with him and his with the rest of the world.

I wish I knew that I would start grieving the moment I was told he would die. I lived every day inside a dichotomy… The hope of finding a cure vs. knowing the statistics and that we were facing his death. There is nothing more confusing, nothing more exhausting, nothing more devastating, Decisions to be made every single day about his care, his quality of life, what’s important, what’s not, what will help, what won’t, when should I stop working, when should I stop trying so hard and just enjoy the days we have left. And that was just for Jacob… In the mix of all that you also have other children to consider and make choices for, not only in their every day lives but in how all of this affects them.

I wish I had known what to expect from this beast of a disease: how things would change so quickly after months of “stability”, how much time we had left when we decided to go to Germany, and what the end would look like, because that is what I was seeing after a week in Germany – the beginning of the end. I wish I knew how much having this awful disease eating at his brain would take from him… before it took his life.

I wish I knew how this experience of fighting for my son life’s and then losing him would change me forever. Brain cancer alone is not something you go through and come out of on the other side unchanged… Brain cancer resulting in the loss of your child means a part of you dies with them.

To this day, I wish I knew what was going on in that beautiful little mind of his. What did he know, what did he understand… especially in those last days and hours. I wish I knew… I wish he could tell me.

“It has been said, ‘time heals all wounds.’ I do not agree. The wounds remain. In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens. But it is never gone.” ― Rose Kennedy

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Let’s make a movie!

thisgreymatters:

I am SO excited about this project. Many of you have encountered Alex’s blog, and you know that he is a wonderful storyteller. What an amazing opportunity to have a brain tumor survivor tell this story in a way that could literally reach millions of people.

I know that people impacted by brain tumors/brain cancer frequently have very limited budgets, but the beauty of crowd sourcing is that you don’t have to give much. Just $5 will make a difference – especially if you then share the link. Please share this link far and wide: Twitter, Facebook, Pinterest, Blogs, Google+. Anywhere people gather online!

I can’t wait to see this film come to life!

Originally posted on The New Normal:

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“Sometimes in life you step out in faith and it’s always a scary endeavor”.

I’m about to do something that is very hard for me to do but I know deep down that it will be very rewarding and I’m hoping it could also excite and unite the Brain Cancer community in a unique way. Over the past 8 months or so I’ve been developing a fictional film inspired by my journey with Brain Cancer and have been shopping it around. It’s a comedic (and I think unconventionally heartwarming) take on the Cancer journey, similar to the film “50/50″ (that ironically came out in theaters the day I had my second surgery). There has been a ton of interest in and excitement surrounding the idea, but no bites yet.

A couple months ago I was talking with a friend who is a pretty successful industry vet and they encouraged me to…

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52 People You Need To Meet: #12 Shawn Ratcliffe

What I Wish I Knew Before My Son Was Diagnosed with Brain Cancer

I wish I had known how big a role you truly play in the medical care of your loved one. TRUST YOUR INSTINCTS! They are nearly always right and you know your family member much better than the doctors. Also, make friends with the nurses – they can be a huge advocate when you need a different opinion or help in understanding the “system” or even getting past some of the quagmire you encounter with all the different specialists insisting on their unique treatment plan.  Ask to see the “chart” (if they will let you) so that you can better understand just what the doctors might be thinking. If you don’t feel comfortable with the answers you are given, keep asking, don’t be brushed aside as if you are too paranoid (“just being a Mom”), don’t back down, and know that the doctors are doing their best but in the situation of brain tumors their best is still greatly lacking in knowledge and expertise.  Every patient is different, and YOU are the best one to help your loved one. From diagnosis to death is a rollercoaster ride on every possible level, take one day at a time and always look for the positives.

For us, it started out like any other Saturday morning.  Matt and I had breakfast, no one else was up yet. He was off to get his eyes checked as we were sure that was what was causing his headaches. Not long after he arrived at the Dr’s office he sent me a text “They want me to get an MRI”. I was stunned, and in my heart, I knew we were headed for something scary.  Within a few hours, we heard the words that would change our lives forever. “A very large mass on the right front lobe of your brain. It is cancer.” He was 20 years old.  By Sunday afternoon, 24 hours later, the tennis ball size tumor had been removed, or at least 90% of it. Matty bounced back like a true warrior, despite major pain and swelling, and on Thursday afternoon, he and I walked out of the hospital, confident that the worst was behind us.  Naïve, I know.

Within a few weeks, the swelling was so bad that they had to put in a VP shunt.  Within about a month, they removed the shunt as it had caused massive infection.  He was now experiencing Grand Mal seizures, loss of memory and functionality.  Shortly after that, he was fired from his job, and we added major anxiety and depression to our list of issues.    Basically, everything that could go wrong did go wrong.  He continued to focus on school, and within just over a year, he graduated top of his class at ITT Tech. It was truly a highlight of his life.   After 6 weeks of radiation, 11 months of chemo, and 5 stays in the hospital we finally heard the words “no evidence of tumor”, and it looked like we were finally getting a break!

With his confidence at an all-time high, he accepted a job in San Francisco, California, and we moved him out there.  I was, of course, devastated and proud all at the same time.  There were many struggles during the 18 months he was there.  He had just gotten his dream job working for Google when we realized the infection had never really gone away, and two more surgeries would be required.  The first was to remove the infected brain plate and start him on aggressive antibiotics.  Of course, during that time the cancer returned, and by the time they were able to replace the brain plate, the tumor had grown to the size of a fist.  It was stage 4 and angry.  The doctor was so aggressive in the recession of the tumor for the fifth and final surgery that Matty lost half of his eyesight in both eyes, the use of his entire left side, his short term memory, and some of his cognitive skills.  We managed to get him home to Valley Center, Kansas after an extensive stay in the hospital and quickly signed up for a clinical trial through Mayo Clinic.  But to no avail.

Just days after his 24th birthday, we were told there was nothing more they could do.  Matty wanted to go home and party with his family and friends and that is just what we did.  For the 3 weeks and 3 days he was with us, we opened our home to anyone, anytime.  Friends and family came from all over the country to spend time with him, reminisce about the good times and embrace the present, soaking in every moment with him. It was such a difficult time filled with tears, laughter, heartbreak, stress, and always love. Lots of love.

Matthew came into this world on a Sunday morning at 8:53am as a content, happy baby boy and left on a Sunday morning at 8:35am as a peaceful young man ready to let go of this life and seek out new adventures. It was a true privilege to be with my son for both. I cherish the memories that help me never forget, help me learn, help me survive.

During his entire fight my son displayed a kindness and gentleness that I could only watch, I felt none of that.  He always thanked everyone for their assistance and never lost his patience, despite severe pain at times.  He was constantly trying to help people feel comfortable with his cancer, with a ready quip or comeback to make them laugh.  Often times when a nurse finally arrived with pain meds to help with a horrible headache, he would purpose marriage and make them know he appreciated their efforts. I, on the other hand, was tenacious if not demanding when it came to his care and pain management.  His last effort to help others was to donate his body to science.  It was his hope that somehow he just might help find a cure so others would not have to endure what he did.

My wish is for everyone to enjoy today, whatever it brings, and make the most of it.   My son is gone in body, but he lives on in our hearts and our memories.  I am a better person having experienced this pain and heartache, no matter how awful it has seemed at times. It has softened the rough edges, dimmed the harsh blacks and whites and helped me focus more on the moment. I have finally come to a sort of peace with the fact that I’m alive and healthy, despite my desperate pleas that I be allowed to somehow take his place.  Matthew is my hero, and I just hope that I can make him as proud of me as I am of him!  Live, Laugh, Love

 

 

 

 

Sometimes You’ve Just Got To Stop and Say Thanks

My “to do” list is LONG. Work projects, running a non-profit, and life in general make me a busy gal most of the time. But today, I had to pause in the middle of all that to just say a very public and very heartfelt “THANK YOU!” to the people in my life who believe in me and offer their own special kinds of support.

My family is always behind me encouraging me and helping me accomplish various tasks, and I don’t thank them enough. On top of those blessings, I had two really special people reach out to me today to give their unique support. The first one was a very concrete donation of office supplies and furniture that we can use to set up our offices for Dragon Master Foundation. We don’t even have office space yet, but she had the vision to think of us and make sure we would have everything we would need for 6 different workstations! Everything except computers and phones are taken care of with this one generous donation! I’m so excited to have this part of our office needs met!

The second person let me know that he has mailed a piece of original art that he painted in memory of my son. This particular artist is a great friend that I have not seen in many years. He is someone I have learned a lot from over the years, and I admire him as a person and an artist. I am so touched and honored that he painted something in memory of David. And he emailed me to let me know it is coming, which means I have a few days of eager anticipation! How fun is that?

I guess my point to this post is that we all have gifts to give – big and small. From helping carry supplies in from the car to using your artistic talents to encourage others gifts come in all shapes and sizes. I may not verbalize it enough, but I am very aware of the many gifts that are given to me, and I am very, very grateful. And dare I say… happy. :)

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