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It has already been a great year, for Thea's Star of Hope, and we are just getting started!  To date, we have raised almost $25,000 in 2017!  Our big spring event, Step It Up for Research, is coming up in just a few days, and we hope to see you there!  The funds raised for this event will go to funding a clinical trial that will genetically sequence all newly diagnosed children with low grade gliomas and map their tumors for all of the known genetic mutations.  This will change treatment options for these kids and have a tremendous impact on their quality of life. 

 

Of course, we couldn't do all of this without the tremendous support from our volunteers and board of directors.  We are growing and wanted to take a moment and welcome two new board members to the organization! 

 

Holly Yablonowitz

Holly joined the board in December and is a graduate of the The College of New Jersey.  She has over 20 years of experience in business management, customer service, project management and event planning. In addition to her business experience, Holly has been also a dance teacher and co-owner of All for Dance in Robbinsville for the past 13 years.  Holly was delighted to meet Thea over 5 years ago in dance class.  Her spirit, joy and strength were inspiring to everyone at All for Dance.   After learning about TSOH, Holly knew that she and All for Dance wanted to play a part in helping to improve treatments for children.

 

 

 

 

 

 

 

Dan Schuberth

Dan is a graduate of Bowdoin College (B.A.) and the University of Pennsylvania (M.S.).  He returned to UPenn in the Fall of 2016 to pursue a Master's Degree in Public Administration (M.P.A.) while working full time as Regional Operations Manager for McMaster-Carr, a Robbinsville-based industrial supply company.
Dan was elected to his first term on Robbinsville's Township Council in November, 2015. He served as Chairman of the Economic Development Advisory Committee (EDAC) from 2012 to 2015, where he helped create a vibrant network among Robbinsville's small business owners and encouraged new businesses to open in town. He also served as Mayor Fried's representative on the Township Planning Board in 2015 and as the Council representative in 2016. 
Dan became involved in TSOH in 2014, when he attended our very first family fun walk.  He has been a tremendous supporter, ever since, helping us make connections in the area and supporting every event we have had, since.  He has volunteered with several non-profit organizations and is a Director on the Board of the Mercer County Chapter of the National Alliance on Mental Illness (NAMI Mercer).

 

 

A few years ago, I wrote a blog about a favorite TV show of mine.  It seems like today is the 20th anniversary (what??!!!) of "Buffy the Vampire Slayer" arguably, (or not!) one of the best shows of all time.  Why am I writing about some TV show?  What does this have to do with pediatric cancer?  Stay with me...

There once was the incredible show called Buffy the Vampire Slayer. If you watched and were a fan of the show, you will totally understand this. If not, I’ll give a brief background. But go and rent and watch the show. Not because it will help you to understand this, but because it’s just a great show!

There is Buffy. She is a normal high school girl until one day she told she now has to fight demons and vampires. Bam. Her life is turned upside down and now she can no longer do all the things a normal teenager does because she has to spend her time fighting these monsters so they don’t kill everyone in town.

One of the biggest issues she faces, is that she has very little help. The whole town just seems to go on and not see that there are vampires killing people left and right. They are in denial. They don’t want to believe these things happen. Not in Sunnydale. Sunnydale is a nice little town where everyone is happy and everything is perfect. So they close their eyes and minds and just go on with their lives.

There is an actual term called, “Sunnydale Syndrome.” Google it. It’s when there is a “universe where “it seems that with your average person, their attention span is wholly taken up with the gray mundanity of their everyday lives. Literally, they can’t see anything too strange” and therefore ignore the weirdness that surrounds them…while the main characters in the story are entirely focused on interacting with it. This trope is otherwise known as “Sunnydale Syndrome” — named after the setting of Buffy the Vampire Slayer, where everyone is oblivous to the vampires and other evil creatures who walk around right under their noses.” (The Popular Uncanny.)

There is this whole other world going on. One where the fate of the world is in jeopardy every day (or at least once each season .) Buffy is screaming, “Don’t you see what’s happening here!” But everyone just denies its existence. If it were acknowledged, it would have to be dealt with. Buffy’s frustration at being stuck in this world that no one really sees, leaves her feeling lonely and isolated.

That is what fighting cancer is like. Unless others can see this world for what it really is, we can never win the fight. Some people eventually open their eyes to it. Others choose to keep them closed. Some people won’t believe it until that vampire comes knocking on their door. Only cancer doesn’t ask if it can come in. It just does. It breaks the door down.

Cancer is indiscriminate. It doesn’t care if you are rich, poor, a good person or a bad person. Just like the vampires, it’s just looking for a warm body to sustain it. It doesn’t just pray on the weak. It is bold enough, and strong enough, to attack anyone. So when it busts in the door to the house next door, will you turn your head and pretend it doesn’t exist? Or will you join the fight, so that it doesn’t come after you, next?

You may be afraid. I know it can be difficult to find the right words. But there are no right words. Sometimes the worst thing to do or say, is nothing at all. 

Yes WE can

March 17, 2016

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When we decided to start Thea's Star of Hope, we knew it would be a challenge.  But we did it with the intent on making a real difference.  So many people were skeptical that our little organization could impact the world of childhood brain tumors, in a meaningful way.  But we can.  We don't do it alone, though.  It takes an army.  And we have one.  And it's getting noticed.  Recognition for Thea's Star of Hope means one very important thing - more donations and more funding for pediatric brain tumor research.  Check out the fantastic article that was just published in Cure Today online and see how Thea's Star of Hope is making a difference.  Please read and share.  If we get enough views, it will be published in Cure Today Magazine, the largest consumer publication in the United States focused entirely on cancer.  Read the article, HERE

 

 

 

Amazing things are happening in the pediatric brain tumor research arena.  Last week, Dana Farber Cancer and Children's Hospital of Philadelphia announced  joint study that determined an abnormal DNA sequence that drives growth in one type of low grade glioma.  This groundbreaking study was funded, collaboratively, by Thea's Star of Hope, Pediatric Low Grade Glioma Foundation/A Kid's Brain Tumor Cure, Voices Against Cancer, and multiple other private foundations, as cited in the study manuscript.

This finding is so important as it allows clinicians to then treat this tumor more effectively, and reduce treatment related side effects and complications.  Up until now, no specific genetic abnormality had been identified as a “driver” of angiocentric gliomas.  In addition, the collaborative work between Dana Farber and CHOP, highlights the breaking down of "research silos" and a focus on finding cures, not competition. 

We couldn't be more pleased to have had a hand in this important work.  Your support and donations have made our funding of this project possible.  Thank you, and congratulations to to the primary authors: Dr. Adam Resnick, Dr. Keith Ligon, Dr. Rameen Beroukhim, Dr Pratiti Bandopadhayay, Dr Lori Ramkissoon, Dr. Guillaume Bergthold, Payal Jain and the entire research team. The complete manuscript of this study can be found here.

Thea's Star of Hope is pleased to welcome three new members to the Board of Directors.  The three are all executives that come from a variety of backgrounds.  Their experience in biotech, non-profit, human resources and business development will strengthen our ability to make Thea's Star of Hope a significant contributor in the world of pediatric brain tumor research.

 

Craig Fishman

Craig is a Field Application Scientist District Manager for the market leader in NexGen Sequencing, Illumina.  Craig and his highly skilled team of application scientists work closely with customers in the Philadelphia, NY, and CT metropolitan area to support the successful use of NexGen sequencing in the laboratory.  Craig holds a Master's of Science degree in Molecular Biology and Genetics from Drexel University College of Medicine and an MBA from University of Massachusetts.  

Previously, Craig had been an active volunteer with the Muscular Dystrophy Association participating in the MDA telethon and the association's kid's summer camp.  Craig is very motivated in supporting TSOH's mission of improving the quality of life for children suffering from brain tumors through supporting the advancement of research to combat brain tumors.

 

Kimberly Sloan

Kimberly has a wealth of human resources experience in both the nonprofit and corporate sectors. From 2002 to 2015 , she was the Vice President of Human Resources at Biocon dba MTF. As the Head of Human Resources , she promoted changes in the culture that supported the organization’s current strategic direction and developed the strategy of all Human Resources programs and policies.

From 2001 to 2002, she was Vice President, Human Resources at Princeton Financial Systems (subsidiary of State Street Corporation) in Princeton, New Jersey. There she was responsible for executive management recruitment, and accountable for the delivery of all Human Resources activities including health and welfare benefits, 401(k) and pension, and payroll for operations in the United States, United Kingdom, Canada and Australia.

Prior to that she was with Dun & Bradstreet in NJ, for six years, first as Manager of Human Resources and then as Director of Human Resources.

She holds a Bachelor of Arts in Psychology from Rutgers University in New Brunswick, NJ, and a Master of Science in Industrial Relations and Human Resource Management from Rutgers University, Piscataway, NJ.

She is a Professional Member of the Society for Human Resources Management and a member of the National Association of Female Executives.

Kimberly resides in New Jersey with her two children, Matthew and Mackenna.

 

Mike Carpenter

Mike is a New Jersey native and has made his way back after 10 years of military service. Mike has dedicated his professional career to helping organizations become more effective, focused and profitable in the public and private sectors. He also brings extensive experience in leadership, development and digital marketing. Mike is a graduate of the U.S. Naval Academy in Annapolis, Maryland where he was commissioned as an Officer in the U.S. Marine Corps.  He has earned a Master of Public Administration from Oklahoma University. He currently resides in Pennington, NJ with his wife and two children.

 

 

 

Have you ever heard the word "scanxiety?"  If you are the caregiver of a child with a brain tumor, this word is just as much a part of your vocabulary as "car" of "dog."  Scanxiety:  The anxiety associated with cancer detecting scans.  Every few months, each one of these kids will get an MRI.  For some it's yearly, for others, it's every 3 months or more.  Each one of these brings about fear.  Fear that the tumor is back or growing.  Fear that treatment needs to start again, or change, or there is nothing more that can be done.  The scanxiety never gets less with each good scan.  It never goes away.  Even after 8 years, I still freak out at scan time.  Every.  Single.  Time.  For our last day of Childhood Cancer Awareness month, here's another blog from Amanda Skelte.  Her post sums up, perfectly, the worry that cannot be avoided, and yet how you do your best to not let it suck you into it's unrelenting claws.  You can read more about the Skelte family and their daughter's battle with a brain tumor at This Year's Love Will Last

 

scanxiety.

sometimes i type things out on brain tumor pages or to friends with brain tumor kids that i only wish my own head could grasp.

my heart does. but my head lags in that department. 

i tell people not to worry about scans because nothing changes the outcomes (i do.)
i tell people to let things go and live day to day all of the time bc life can change at an instance (sometimes i fail at this.)
i tell people to trust their intuition (yet i doubt myself, often.)

i don't know if i do say these things so often to people because it helps my own brain lean towards those ideas by the power of persuasion in a way? i dont know.

the week leading up to an MRI, you see everything.

your child walks worse. they talk worse. they blink too much. they don't blink enough. they stare into space. they sleep too much. they don't sleep enough. they look like they might feel sick and aren't telling you. oh, wait, they just have a cold. they used to know something you asked. your child must be losing their memory. you cry in the car more often than normal. you may throw up throughout the day. some days are awesome. you're grateful. then you're not because maybe you should prepare yourself for bad news. what would i do if they told me bad news? i would keep it together with a game plan. i would throw up for days. i could pick myself up and handle it. i would fall apart. i would do what i need to do - because i would have to. the weight of it all is unbearable at times. catch-your-breath-overwhelmingly unbearable. your chest can feel like it almost collapses with one simple thought.

you go to the MRI and you've hyped yourself up for days. everything seems normal - you see doctors and nurses you know and do the same thing you've done two dozen times. weight, height, go over meds, get a gown, impossibly distract your child from needing to eat or drink. you go and wait. this MRI is definitely taking longer than normal. it's because they found something. obviously. well, wait, i guess its not that much longer...

if you are lucky enough for an appointment after, you'll clean yourself up if you've thrown up breakfast in the hospital bathroom and head to a clinic room to wait with your post-anesthesia tired, crabby kid. maybe put on the tv, play on the ipad, chat like normal. you try to answer 17 texts from sweet and curious friends wondering if you have results yet, but after a couple, you feel exhausted all of a sudden. you might be there with your husband or wife. you might be there alone. but waiting is definitely better than going home right away. or maybe its better to just wait for a call - where you can forget things for a few hours. but it doesn't matter because here you are, waiting.

we keep our door cracked because for some reason, i get so hot in that room. i hear oncologists talk to other patients, but only that one and a half second that they open the door to say "good news!" to kids waiting on their own results. i get reminded that we aren't the only people waiting for results - she isn't the only sick kid around. i tell myself to feel blessed. then i need to throw up again. i shut the door.

eventually reese falls back asleep and i wait again. playing on my phone. pretending i am not where i am.

then you hear a quiet knock and the door handle jiggles. 

that next half of a second, your entire life comes to a head. everything you know could come crashing down with the next sentences that you hear.

if you are lucky enough to hear good news, you feel good. 3 more months til the next MRI. you feel good for a month, maybe 2, then it will start all over again.

that. that is scanxiety.

for some reason, i am dwelling on this one. i felt very confident in september - and i have no reason not to feel the same way on monday. yet, i do. we've taken her port out now. maybe i've felt too confident. it all seems too good to be true.

worry is the thief of joy. i know this. so now i am choosing to forget that 2 years ago, this friday, we were told her tumor was growing, that we'd need another brain surgery. i am going to try not to focus 1 year ago when she was in the hospital with some sort of infection that we spent days trying to figure out with such low temps and heart rate. i am going to spend all of my energy praying that the days leading up to christmas are spent at home making craft ornaments and wrapping presents - and not at the hospital with wishes to make it home in time for santa.

Our guest blogger this week, is Amanda Haddock.  She lost her son to the most deadly type of brain cancer, Glioblastoma Multiforme (GBM.)  She has since made it her mission to help find more effective treatments for kids with brain tumors, just as Thea's Star of Hope seeks to do.  Hoping to turn this tragedy into something positive and help solve the riddle of cancer, she founded the Dragon Master Foundation, with the goal of using big data to help researchers identify patterns and further their research.  Dragon Master supports the work of the CBTTC, at CHOP, as well.  With this collaboration, we can help make a difference for all kids with brain tumors, around the world.  Learn more about Dragon Master foundation at www.dragonmasterfoundation.org/

 

I think most parents of a child with cancer would tell you the same thing: it struck out of the blue. Kids don’t get cancer because they smoked too much or made other questionable lifestyle decisions. We don’t know what causes most childhood cancers, so when they strike, almost everyone is unprepared. We were no different.

 My son David was a healthy, active 16 year old. He had spent the summer swimming, playing tennis and  water skiing. He was looking forward to his junior year of high school and especially his Latin and Culinary Arts classes. He wanted to be a chef, and he was always coming up with some crazy food combination for us to try. He delighted in being “weird” and was a wonderful “outside the box” thinker.  

 Just days before school started, though, he got a ferocious headache that wasn’t relieved by prescription drugs. A CT scan at the local hospital showed a mass and blood in his brain, and so he got his first ambulance ride to the regional hospital to get an MRI. The MRI didn’t give us a lot more information, but his tumor was operable, and so they did a resection that confirmed a diagnosis of GBM.

GBM is the most deadly adult brain tumor, and a quick internet search showed us that Ted Kennedy had died from the same disease just one year earlier. We knew that if we were going to save David, it would have to be through innovation. We started on a journey that led us to a number of events with several different nonprofits that were trying to make a difference in the world of brain cancer research.

 David was very interested in research and in helping other kids with cancer. He never asked for anything for himself, and he was always quick to volunteer for research studies that might give some insight into this insidious disease. We chose the path of clinical trials, and David had pretty good quality of life. However, GBM is a wicked opponent, and David passed away only 20 months after diagnosis. I still can’t believe how quickly he went from healthy young man to a son I will never see again. Devastating doesn’t begin to cover it.

 Among all the things David was, he was also very stubborn. I knew that his death would not be a good enough excuse for me to stop fighting for a cure. If anything, we could feel his spirit pushing us onward and telling us we had to work twice as hard because he was no longer here to battle. So we pushed on, looking for ways to help researchers find a cure.

 We heard Dr. Anna Barker speaking at a conference and saying that researchers needed to be able to compare genomic data. She said she thought that was the key to a cure. It seemed reasonable to us that compiling that data in one place would be extremely useful, and so we researched to find a project that was doing that. What we found was a lot of good projects that were working with different segments of research data, but none that had a goal or vision of combing the data for public access. All of the data seemed to exist in silos with lots of restrictions on who could use it and what could be done with the data. We envisioned something that researchers, patients and doctors could use to track down vital information that would help apply precision medicine initiatives.

 At first, we thought we would have to build something from scratch, but then we found the Childhood Brain Tumor Tissue Consortium (CBTTC). This group of hospitals had already agreed to share data in a very open source format, and all we needed to do was help them build a platform that could house not only pediatric data and not only brain tumor data, but a wide variety of data from many disease cohorts. Including a broad range of information would allow us to better understand the differences and similarities between diseases and treatments so we might better harness the existing treatments and more quickly develop new ones.

 There was already an existing network of nonprofits supporting the CBTTC in their efforts to build a database and user-friendly interface, so we did not have to start from the beginning. By joining forces with the CBTTC and other nonprofits, we have started a platform that will be very unique from the other databases in some meaningful ways.

 First, the data will be accessible to researchers who are not within consortium’s boundaries. It will have the size and scale of a government project, but to date, it has been independently funded by the hospitals, nonprofits, and individuals who believe in the vision of the project. This is really an unprecedented level of sharing that signifies a real paradigm shift in the way hospitals and researchers will collaborate in the future.

 Second, the data will be linked to patient longitudinal data. This means that we won’t just be looking at a snapshot in time, but researchers can see each patient’s clinical records to know how they responded to a particular treatment. It would also potentially let researchers seek out patients whom they feel would be successful on a particular trial.

Third, unlike most existing databases, it won’t limit what kind of data is stored. Right now, most research is done based on disease type, but this database would allow researchers to focus on a particular mutation, for example, regardless of whether or not that mutation appears in breast cancer or brain cancer. It will also house the entire genome, where many databases currently only store the exome. Having all the raw data at their command will mean that researchers can easily see how conclusions were reached and verify or replicate discoveries.

 I believe this database is the gateway to nearly all cancer discoveries that will be made in the next 10-20 years. It won’t help a single research project – it will help all of them. I’m so proud of the visionaries who formed and supported the CBTTC, and I’m truly honored that we are part of the effort that is pushing this forward into unchartered waters. It’s kind of a crazy, weird project, but it is completely feasible. I know it is exactly the kind of thing David would be proud of, too.

I know so much about Amanda, and her life with her crazy kids, including Reese.  Reese, just like Thea, was diagnosed with a brain tumor, and the Skeltes' lives were turned upside down.  I have followed their journey and known how every step felt.  I have cried and laughed and been angry with them.  But, I've never been able to reach out and hug her.  We have never met, in person.  But, this crazy bond you have is undeniable.  And it is awful that this horrible disease is what brings some people closer, yet drives others apart.  Amanda was blogging and chronicling her life, long before her daughter was diagnosed with a brain tumor.  Her gift of putting into words the feelings and thoughts of all of us on the journey, will leave you speechless.  And it will make you want to reach out and hug her, too.  

This blog is about school.  Millions of kids are a few weeks into a new school year.  What is it like?  We send then off on the bus with some worries about who will be in their class and will their teacher be nice.  But kids like Resse and Thea (and thousands of others) have very different experiences.  And, their parents have much bigger concerns.  Will the nurse call me, today?  Will she have a meltdown in the middle of class?  Will the kids be accepting and understanding? 

This blog was originally posted on http://www.thisyearslovewilllast.com.  Amanda has agreed to share, here, to help raise awareness that kids get cancer, too, and the change in your life, goes far beyond just doctor appointments and chemo.

 

before school begins.

I have never walked this specific path before. I have taken kids to school on their first day of kindergarten and cried after drop off. I have been nervous for new adventures, but known in my heart they would love it. I have never had to navigate public school with a child who had special needs. Our time at Reese's last school was special bc the program was for children with disabilities. Now, that could mean in need of physical therapy, speech delayed, cognitively delayed, etc. Many types of needs and diagnoses could get you in to the program. Half of the day was inclusion into mainstream - and really, I thought the transition for me would be much easier than it is.

I am 3 weeks away from sending Reese into a classroom that is 100% mainstream. She is absolutely ready for this. She knows all of her letters, the sounds of letters, her numbers and how to add them. She is full of jokes and smiles, she can run around and play with her friends, and loves to be silly.

But here I am, writing an open letter, I suppose, to her teachers and friends. Friends that are yet too young to even read and teachers she may have in the immediate future, or years to come. And to all teachers and friends of those who have a new kid in class who is just has something extra special and different about them.

Be patient. It may take Reese an extra second to answer your question, but it's there. She just is too busy thinking about whether her answer is correct or not. Remind her that she does, in fact, know the answer so to just say it. Also, she may forget that same answer tomorrow, when you ask. She knows it, but just can't get to it as quickly. But man, oh man, she cannot wait to see your eyes light up when she gets the answers correct. If you don't understand something she says, try again later and you will. She has so much to say if you just wait for it.

Be safe. This is all overwhelming and new - just like it is for a lot of kindergartners, but for Reese, she doesn't really understand how new or different it is from previous years. School was a safe place for her. It was a place where all of her teachers are her best friends and her classmates are just like her. For her, kindergarten will be the same way, so please help her remember that it is, as always, the safest and best place to spend your day. Give a hug when she is sad, don't just give her the facts about me coming back at the end of the day. Help her up when she falls, instead of telling her to brush it off. Sometimes being a safety net is just as important to teaching those life lessons. She just wants a cuddle once in a while, but teaching her a lesson on getting out of your seat will break her spirit for a week. She is a rule follower and will never have her "name on the board" or "points taken away" or anything like that. She can't wait to help you, as soon as she trusts that you'll let her. That is what happens when kids spend a lot of time at the hospital, as they grow up - they have to learn to trust the people in the room are the ones that will keep her safe from harm.

Be kind. Reese's AFO boot is cheetah print. To all her classmates, "pretty cool, huh?" It helps her so her toe doesn't drop when she's trying to walk. She can't use her right hand that well, but "bad arm" is it's name and it does what it needs to do and learns more every day. Her front teeth are gone because some of her meds ruined them, but who wants to brush that many teeth anyway, right? ;) Reese's hair is short and awkward, sometimes, because this time last year, she was still basically bald. I knew she'd start kindergarten with a cute bob - and that is how it looks to be. She is just like YOU. She wants to play with you and make you laugh... even if she is the size of a 3 year old.

Be diligent. It takes Reese a few more mins to get things done in the bathroom. I will try to keep her in short dresses so that she doesn't have to deal with leggings often, but please keep an eye on how long she's been in there. It is possible that she's just trying to get her undies into the back of her leggings and "bad arm" is being a pain... maybe send a friend in to get her. She will have an aide on the playground, at first, to teach her the boundaries, but please try to remind her, in other locations, "step!" because she only has one eye to catch that drop. Eventually, she'll remember where all the steps are, but she just needs you to be her extra eye for a bit.

Be you. Reese cannot wait to get to know her new friends and teachers. Everything written up there, teachers already know and parents already try to teach their kids... but I still have to type it out before my emotions get the better of me. She loves so fiercely and I can't wait for her new school to get to know her like the last one did. I want to cry when she graduates kindergarten because I loved everyone so much. I want to miss her daily because she just loves school so much and cannot wait to go the next day. I would never tell someone how to do their job or be someone they are not, but it is important to help people know who Reese is, also. And she's just so many things that are worth waiting for.

The next few weeks will be for screeners, info meetings for GT and kindy, 504/IEP meetings for both S and R, back to school night, and more. Dentists appointments are made and they will have squeaky clean teeth. I have paid too much for new lunch boxes that my kids love, but that Reese can open easily. I need first day of school dresses, still, though, and that will be a task in itself. Reese moved into the pre-kindy class at church (by herself - she had been wanting to stay w Miller, each week) so that she is in a group of her peers and it has been fabulous "practice" being w kids that may be in her classes.

Her MRI results yesterday said "stable" except for a small debate over something like 1mm of possible growth that they don't even really call growth. All of that to say that we are status quo on chemo right now. We will re-work our schedule to going to chemo on Monday afternoons between the end of the school day and 5:30 dance class. Once a month she will have to miss the day for an appointment downtown, but other than that, she's all yours, kindergarten. She doesn't have low counts, doesn't have hospital stays, usually. So, normal.

I wish that I could tell every teacher something special about each of my elementary aged children. I wish Aidan's teacher knew that she was sometimes too shy to be overly confident, but that she will knock your socks off with her brain. Sawyer's teacher needs to know how absolutely special it is to have such a unique kid around who wants to learn so badly, but just needs a bit of help along the way.

...and at any point in time, remember that they have, and truly need, each other. They are going to want to wave to each other, if not hug each other, in the hall if they pass on opposite lunch schedules. They are going to want to sit by each other in bus or car line. All 3 of the elementary aged Skelte girls are a team... a team with their littles, at home, who they'll talk about throughout the day or write about in their daily musings.

Next stop... kindergarten.

What is it like when you find out that your child has a brain tumor?  Sometimes symptoms occur and it's an immediate diagnosis.  Sometimes, families try to find out what's wrong with their child for months, or even years.   A brain tumor isn't usually the first thing that comes to mind when you're baby is sick.  Then, how do you deal with it?  I get told all the time, "I don't know how you do it."  How can we not?  The truth is, that no one gave us a choice.  We are just being mom's to our children.  We are aware that we are on borrowed time.  Every day is a gift.  Our children are a gift, no matter what we have to go through, with them. 

We've known Laura, and her son, Luke, for many years.  He was given just a few months to live, at diagnosis, and here he is, now, 12 years later.  It has been an uphill battle for them.  But, every moment they have with Luke is a blessing, and worth the fight.

 

"How do you do it?"

 

No one ever asked me how I did it when I was the mother of three active little boys. People would smile at me, or say “God Bless You!” They gave us space in the grocery store, and looked the other way if one of my guys was having a melt down in the library.   Moms of girls told me I was lucky to have boys, because “girls are so much more complicated.”   But no one asked me “How do you do it?” Well maybe my Mom asked me this question now and again. And she had raised four kids of her own, for some time as a single Mom. How did she do it?

When along came our fourth boy, our world changed. When we had our fourth child, I was nearly 40. I wasn’t worried about being too old to be a new mother though. In fact I felt confident that I knew what I needed to really enjoy a baby. What new could there be to know?   What new indeed?   When our littlest one was six weeks old, I began to see worrying signs that I couldn’t figure out. Something was not right. I tried to talk with our pediatrician about the unfamiliar and startling things I was seeing. My pediatrician told me that he thought I was overreacting. He thought I was having new mother jitters. With my fourth child? I wanted to believe him, but my mother’s instinct took over. One afternoon Luke turned blue while I was nursing him! I called my husband at work and told him, I was going to the Emergency Room right away, and he was to meet me there.

It turned out that what was scaring me was just as shocking to the doctors and nurses at the ER. I found out that what I had been seeing for a few weeks was seizures! Being at the hospital in a safe place, surrounded by people who could help us, I fell apart. The emergency staff took charge. From our local emergency room, we were sent by ambulance to The Children’s Hospital of Philadelphia. Luke and I didn’t see the outside world again for a week. It was a strange kind of odyssey.

Many tests, and observations, and visits with teams of doctors on that first stay didn’t give us any answers as to what was wrong with our baby. Through the next year, we went back and forth from home to hospital, to doctors offices. We tried to treat his seizures, and get to the source of them. Always, it seemed like we were about two steps behind what was happening to him. At this time, I just knew that whatever it was that was making Luke sick would be figured out, and be fixed so that we could get on with life with four boys.

We had a caring and dedicated neurologist. He stayed with us and spent his time puzzling over what was causing Luke’s seizures. His office set us up with support systems. A peer parent from CHOP, came to our house to visit us. She comforted me, and set us up with early intervention. Luke had many delays at this point. Most troubling to us all, were the continued seizures that numbered up to 25 some days- some days more, some days less.

In the autumn of 2003, after one of Luke’s routine EEGs, our neurologist said he thought he saw something that he wanted to have a surgeon, and an oncologist look at. I remember I thought to my self, “Good, now we can get to the bottom of this business, and fix it.”   This new team of doctors suspected something they called “A highly infiltrative growth on the brain.”   “Ok”, I thought, that sounds good…” God protects us from the too hard sometimes.   They wanted to perform surgery to biopsy the growth.

So in October of 2003, Luke had a brain biopsy. By now I was aware that this was a very serious thing happening. Luke was diagnosed with an inoperable brain tumor called Gliomatosis Cerebri. He also has a condition called Neurofibromatosis Type 1. Our world, as we knew it, and planned it, stopped at the moment of this diagnosis. Luke’s prognosis was not good. There was not hope for cure from this type of tumor. It is considered a highly aggressive type of tumor, that the team thought would take his life fairly quickly. They gave us two months to two years life expectancy in 2003. Even without hope of cure, we were offered a treatment that might slow down the progression of the disease.

After much prayer, we decided to try the treatment.

Now after 12 years, and two treatment protocols, Luke is still with us. He has had a bumpy road to travel. He has spent time in hospital. We visit several doctors at CHOP, and he is well known in some of the departments (MRI, Oncology, Neurology).   But our life with him has been a blessing. We take every day as a gift.

These days, it doesn’t surprise me if someone asks me “How do you do it?” In fact I like to be asked about Luke, and how we do this life one day at a time. One day at a time, and much prayer, love and support from our friends and family is the only way we do it. It has been so good for our hearts to share Luke, and our lives with people we meet. We have had many friends stay by us through this journey. Because of Luke’s circumstances, our paths have crossed with special, gifted people we never would meet otherwise. We have met so many people that we can stand beside too. It’s a gift to be able to understand someone else’s pain when life gives them something very hard.

I guess one of the most poignant lessons and gifts we have been given in our wonderful, terrible journey with Luke is that it’s important to open our hearts to the people that pass through our lives. We need them, and they need us.

 

September is Childhood Cancer Awareness Month.  This month we will feature guest blogs, from several parents who have heard the horrible phrase, "Your child has a brain tumor."  Those few little words have a lifetime impact.  It changes who you are, and how your view the world.  We have to make it ok.  We have to find peace, in this awful world of chemotherapy, radiation and surgeries, and all of the complications that come with it.  It's not the life we chose, but we chose to LIVE, every day.

Our first guest blogger is Jackie Savery.  Her son Grayson was diagnosed when he was just 2 years old.  He just started kindergarten, this year and has an unstoppable spirit.  Once you read Jackie's words, you will understand where he gets that from. 

 

 

Pretty Little Boxes

 

            I don’t often let myself think of the "what if’s” and the “maybe’s.”  I don’t allow myself much time to wonder about what could have been or how it should have been.  It’s counterintuitive and well, honestly, I don’t have much in the way of free time to allow myself the luxury of a wondering mind.  But tonight…tonight being one of the last of the dog days of summer, I find myself sitting here, the kids all asleep and the house quiet, and I feel a strange sense of sadness and peace all wrapped up into one somewhat lumpy package (that may or may not be wrapped with a lopsided and crooked bow.) A package of emotions and memories and so many feelings that it is about to burst open at the seams.   It’s a package that was probably painstakingly wrapped and lovingly dropped off at the post office, only to be thrown into a mail truck that went through a typhoon, two hurricanes, and perhaps a volcanic explosion.  

            In fact, the more I think about it, the more I am beginning to think that maybe the life of a family, post brain tumor diagnosis, can best be described in such a way.  My family used to be a pretty, little box.  A neat and tidy ribbon was perched on top and inside, ahhhh, inside you just knew that something amazing was hidden. We had it all.  Literally and figuratively.  On October 31, 2012, I woke up and my family was still a pretty, blue box firmly held together with a starched white ribbon.  I had two gorgeous, healthy children, a loving husband, a great family, and amazing friends.  We had just moved into our dream home and we had hoped to try for another baby in November;  life was just dreamy.  So when Grayson, my 2 year old, started to complain that his bed was spinning and that the house was turning in circles, I will be honest and say that the very naive and innocent part of me thought, “It can’t be anything too bad!  Bad things don’t happen to good people.”  

            I knew though, when an MRI was ordered to determine the cause of his vertigo, that something was wrong.  Big wrong.  I knew it the moment they sedated my child and told me that it would be only be forty-five minutes.  I knew that something was very wrong when, after almost two hours in the waiting room, a doctor sat down across from me and took my hands in hers and said that they had found something inside my two year olds brain and perhaps my husband and I would be more comfortable in a private waiting area. I heard the doctors.  I did.  I heard and I saw them.  I can tell you what they were wearing and what color eyes they had.  I heard what they were saying, but I just couldn’t help but feel as if they had the wrong child.  I heard them speaking, their voices droning on about the location of the tumor and how it was remarkable that he was still so highly functioning.  Yet, despite my very logical personality, all I could think was, “They have the wrong kid, they cannot be talking about my child.  Grayson can’t be ‘sick'. He looks like the poster boy of healthfulness.”  I think I lived in the LaLa Land of Delusion for exactly four days, until a repeat MRI at The Children’s Hospital of Philadelphia was ordered and scary appointments with neurosurgery and neuro-oncology were made.  My delusional bubble burst the second I pushed the number four button on the elevator that was designated for oncology and the doors opened up to a waiting room of mom’s who all looked just like me; shell shocked and tired, but fierce and determined to prove all the doctors, blood results, and MRI reports wrong.  My naive and innocent heart deflated a little that day.  I remember the sound of my sobs on the hour long drive that evening, as the words, “Grayson’s tumor is inoperable, life-threatening and radiation will most likely not be an option.  He will need 15 months of weekly chemotherapy,” ricocheted off the walls of my brain.    

            Things moved quickly then, in hyper-speed, so that I didn’t even have time to process what exactly had just happened.  Ten-hour craniotomies,  learning how to shower and do our laundry when we lived in the fishbowl of PICU, surgical complications, hydrocephalus, endless returns to the operating room, crash courses in the anatomy of the brain, waivers in which we signed consent for our child to be poisoned, in an effort for him to live. Making playdates in the PICU playroom, instead of on the playground.  My marriage become a tag-team relay in which we divided and conquered; my husband staying home with our other son, while I stayed at the hospital with Grayson, and then swapping out duties, when living under hospital lock-down became too much.  We found ourselves navigating the world of medical insurance and tiptoeing our way through the minefield of questions the boys would ask; “What is a tumor?”  “Is Grayson going to die?”  “Why can’t I go to school?”  We became shadows of what we once were.  Shadows of who we thought we would be.  The pretty little box of “us” was hollow and empty; we were on autopilot.  It was the darkest and bleakest moments of my life.  

            It was also the closest I have ever felt to God, to understanding just how deep and selfless unconditional love is, and to true unadulterated beauty.  I am aware of how contrasting the last two sentences are.  Yet, I have found, through surviving (thus far) the storm of pediatric cancer, that there is true beauty and grace in the darkest and coldest months and that, the bleaker Grayson’s prognosis became, the tighter the ring of support and love around my family was.  The darker the day, the clearer I was able to see.  That’s the thing, when you go through the fires of hell, everything except that which is the most vital and imperative, just burns away.  There is such beauty in that and in what remains; a torn and tattered box of a family that one would think was beyond repair.  

            The family we became, post diagnosis, the sad story you read above, make us appear broken and torn to those who look in from the outside, but to me, and to those who see us from the inside out, the scars and battle wounds are what make us even more beautiful, stronger, and resilient.  We are a family who lives in the moment, because we are acutely aware of the fleeting nature of tomorrow.  I am mother who is fiercer, more educated, and more confident than my slender stature and polite smile may suggest.  I have no doubt in my mind the depths I will go for my children, or how deep my love for them is.  My husband has already proven, in his mid-thirties, to be a man of faith and soundness, upon which our family supports itself.  Our marriage, in all its ragged edges and potholes, has proven to be a soft spot to land and a security blanket in which I, in my moments of weakness, seek to find myself wrapped up in.  The superfluous relationships that once, like weeds, littered our lives, were plucked away, so that all that remains are those that are deeply rooted and perennial. There is no room for facades.  There is no leeway for anything ingenuous or less than honest.  There is freedom in living a life in which there are no pretenses

            Grayson’s diagnosis was the worst thing that has ever happened to my family, but in so many ways was the catalyst for the very best things that came to be.  The last three years and all the memories that litter it: the PTSD, the tears, the angst, the rage, fury, blame, guilt and anger.  The countless hours holding my child during chemotherapy, the vomit, the endless medication administered, the pain of pinning my son down to have his port accessed, the feeling of helplessness as I handed my sedated child to surgeon after surgeon.  This never ending cycle of grief, that I find myself so dizzy from riding, is one that I would never wish upon my worst enemy, but if given the choice, I wouldn’t ask for a different life.  If God stood before me and presented me with two options, one being a perfectly wrapped box and the other this; this horribly abused, terribly torn apart and water logged gift, I would choose, time after time, this lopsided and broken family.  

            Clarity is elusive and the gift of clarity is one that comes with a great price.  I fear that so many of us live a lifetime before we know what truly matters in this trip around the sun, before we are content with what we see before us.  I cannot even tell you how calming it is to know that, when holding my children, I am holding all that matters.  All that will ever matter.  There is a peace in clutching your husband’s hand and knowing that there is no one in the world that you would rather walk through hell with.  I mourn the loss of our innocence.  I grieve the family we were.  I wish I could have dreamed a different childhood for my children, but this dilapidated, war-torn, shrapnel shredded, mess of a box before me holds a gift more precious and priceless than anything I could ever imagined three years ago, before brain tumors, cancer, and the mess of the world infiltrated our lives.