So Much For “Catching It Early”

David's Journey, Lessons Learned
David & Rachel

Does this look like a kid waiting on brain surgery?

I found a Facebook post today from before I started this blog. You see, I didn’t know the path that we were headed down. I didn’t know that I would be trying to help others navigate the ugly world of brain cancer. I thought my son had a brain tumor that would require some potentially risky surgery, but that we would get it out and be on our merry way. I didn’t know a lot of things – then.

Fast forward to today, when I know more than I ever wanted to about brain cancer and how devastating it is – even when it is small and they catch it early. You see, this disease isn’t like most cancers. Catching it early doesn’t dramatically improve your chance of survival. It being small doesn’t make it any less aggressive.

Looking back at this post, I am struck by how naive I was. I know that the rest of the world is also that naive. I know that you won’t really understand unless, God forbid, it happens to you or someone you love. And that’s the real kicker. It COULD happen to you or someone you love. We have no idea why David got brain cancer. Most brain cancers can not be traced to a specific cause. He didn’t smoke or drink or even use a cell phone much. He was a healthy, happy 16 year old who didn’t deserve this. No one does.

This post is full of optimism, and though we may not have David with us anymore, we still have his sense of optimism. We know we are on the right track. We know we will help put an end to this disease, and most likely, many others. I wish with all of my heart that it had happened in time to save David, but I move forward everyday with a sense of urgency that it today it could be someone else’s “David”. One day, a mother will get to keep her innocence because of the work you are helping us do.

Here’s the post from September 3, 2010:

David was having really bad headaches so his dad took him to the ER – twice. Second time they did a CT scan and saw something. Turns out he had a small growth with some bleeding. The bleeding was irritating the area & giving him a headache. (We had originally thought the bleeding was an issue, but it seems to have stopped fairly quickly on it’s own.) So the headaches alerted us to a problem (the growth) that might have gone unchecked for a while otherwise.

The growth is a concern because it shouldn’t be there, but as growths go, it seems “good”. It’s small and compact, like a ball – not “reaching out” like an open hand.

Because it is in his head, they want to be very careful how they approach it. Since everything has stabilized so much (a very good thing) they are waiting for the dust to settle (or in this case for the blood that is in the wrong place to be reabsorbed) so they have a nice clear picture when they put their tiny scope camera in.

Now, this may sound intense, but there are some good things working here: 1) they caught it very early and 2) they have time to calmly decide on the best approach to fix it. Since he is doing so well, they can start with the least invasive thing and only use the more invasive stuff as a latter option. (A lot of times the situation is more severe and they have to use the “big guns” right away. And yes, that is just a figure of speech!)

The growth is in his brain, and not in the easiest location to reach, so the doctor is being very cautious about how and where he goes in. It is very likely that David will have to do a little rehab depending on what procedure(s) they have to use.

His headaches have been well under control (sometimes gone) since the day after he came into the hospital, so he’s feeling pretty good. He has been kidding around a lot today and seems pretty comfortable with what’s going on. He does know everything and was able to ask the neurosurgeon questions. (Which, if you know David, you will know that made him happy.)

Please keep praying for him. Things look good for the circumstances, but we have a lot of work to do next week.

Lastly, I’d just like to thank all of you who’ve sent messages of thoughts and prayers. We’ve been fortunate that we’ve never really had to deal with this kind of thing before, so I never really knew how much that meant. We are confident that God is working powerfully for David, and we are so thankful for the prayer warriors out there who are lifting us up. (On a light note, we were visualizing that today as sort of a prayer with a “raise the roof” hand motion. God is good!)

Can Zika Really Cure GBM? Experts Weigh In

Lessons Learned, Uncategorized

3D Image of the Zika Virus from WikiMedia

For most people, trying to navigate the world of new cancer treatments is not easy. The media reports on new discoveries like they are already viable treatments, and patients are often confused as to why they can’t access things they hear about on the news.

We’d like to help brain cancer patients and their families understand these discoveries a little bit better. The first step is really to understand that there is a big difference between what can happen in the lab and what happens in the human body. The lab gives us our first indications that something is worth exploring, but however promising something is in the lab, in the human body that path can lead to many things — from healing to death.

As our first example in what we hope will be an ongoing dialogue, let’s look at the Zika virus news. You’ve probably seen headlines like “Employing Zika Virus to Treat Advanced Brain Cancer” and “Zika Virus Targets and Kills Brain Cancer Stem Cells”. That sounds great, right? Who wouldn’t want to jump on that?

Unfortunately, these are still lab studies, and have a long way to go in proving safe and effective in humans. For some clarification, we reached out to Dr. Cheng-Ying Ho, MD, PhD, at the University of Maryland School of Medicine. Dr. Ho has done some work with both the Zika virus and brain tumors.

Dr. Ho states, “The misconception about Zika originated from the earlier cell culture studies showing Zika preferentially infects neural stem cells. However, the cell culture system is an oversimplified model. It doesn’t have glia or inflammatory cells like human beings.”

She goes on to say, “Mouse models are a lot better, but most of the mice need to have a weakened immune system before they can be infected. Therefore these mice don’t have the immune response against the virus. It is also an artificial system.”

Many times, doctors and researchers are afraid to share preliminary results from studies because the general public may draw the wrong conclusions. Dr. Ho seems to share that concern. She states that her biggest concern about this seemingly promising strategy is the possibility of developing meningoencephalitis. Meningoencephalitis can be fatal and it has occurred in adult Zika patients.

Dr. Ho ended our interactions by saying, “The concept of using Zika virus to treat glioblastoma is very creative but may be difficult to be put into practice due to the possibility of fatal uncontrollable side effects.”

We also talked to Dr. Javad Nazarian of Children’s National Health System because of his work on pediatric brain tumors. He said that the issue is more complicated in children. “A child’s brain is constantly growing and making neuronal connections. It is an active environment and any time we apply drugs that indiscriminately target tumor AND healthy cells, we could potentially do more harm than good. That is why laboratory findings need rigorous testing and multiple validation steps before they have clinical benefits.” He went on to say that this is one reason that discovery and validation of effective treatments takes time.

Obviously, there are labs who are very interested in pursuing Zika as a possible treatment agent. We know that creative measures will be needed to combat GBM and other aggressive brain cancers, so we will continue to hope that one of these creative solutions will turn out to be a viable solution in humans. Will that be Zika? It seems to be too early to say, but for now, patients should not expect this to be a treatment that would be offered soon.

Note: This article is not intended as medical advice and you should always seek the opinion of your physician before starting or stopping any new treatment. Blog post was first published on Medium.com.

 

Finding the Poetry

52 People To Meet Posts, Lessons Learned, People We've Helped

IMG_7611A long time ago, I wrote a poem for my coworkers. I really had a lot of admiration for them, and they taught me a lot of life lessons. They worked hard, played hard, and made the most of every day. They were paralyzed veterans, and as much as I could, I tried to learn from the lessons they shared. Their strength amazed me, and they made me re-think one of my favorite pastimes – complaining. 😉

I think in a lot of ways, I met those men and women to prepare me for what life had in store. It isn’t always easy. It most certainly isn’t fair. But what you choose to do with the pieces you have left after your life explodes… well, that can make all the difference.

Today was supposed to be an “office” day for me. A day to tackle the mountains of paperwork I’m behind on. Instead, it turned into a day to go out into the world and see what it had to share. A lot of what I do is try to raise money for cancer research, and today I had the opportunity to get a check from one of our loyal supporters. That’s a really good thing!! But the reason they are supporters is because their daughter, Addison, died from brain cancer. That really sucks. I get to know them a little better each time we meet, and our conversations nearly always include laughter along with the tears. Today the check came with a hug, and I’m not sure if it felt better to be able to hug them as a thank you or to be hugged in return. Hugging is like that, I guess.

I also had a chance to go visit their daughter’s grave. They picked an amazing spot for her, and I could just feel the love there. Still… it just sucks to visit a child’s grave. I sat and talked with her for a minute about what her parents are doing so that other kids might not have to suffer the way she did. Addison was a fighter that defied the odds. I think she would be happy to know that her tumor got taken out, and hopefully what we learn from it will be used to fight some other child’s tumor.

As I visited with Addison, I listened to her wind chimes and the other sounds of nature there. I thought about how the world shows us poetry if we just stop to see it. Sometimes it is given to us in words, but many more times it is just the feeling you have inside. There aren’t always words to express the feelings we have. The love and the grief are just too big for words.

Addison’s parents let us us her as the “sponsor” for the first child to go on the upcoming clinical trial we are sponsoring, and because of their generous matching gift, we actually funded the first two kids onto the trial. That left me with coming up with a second sponsor person – someone that we can visualize as we fund the third spot on the trial for this unknown child.

And that’s when the day took a turn. You see, there are just so many families we know that have been touched by this disease. So I tried to narrow it down based on significant days to that family, and even that didn’t help! There was the anniversary of Ethan’s passing yesterday, Carter’s birthday today, and the anniversary of Jake’s passing today/tomorrow. (Yes, Jake is special and gets two days. More about that later. )

Most of these kids I never got to meet except through the broken-hearted words of their moms and dads. It’s the same for the adults with brain cancer. They leave behind shattered families who ache to have someone say their name. To know that they mattered and continue to matter.

We are funding this clinical trial to try and save lives, and for me, it is so special to connect the spots on the trial to these special brain cancer warriors. I hope it is special for their families, too.

We post about the progress pretty regularly on Facebook, so please join us there to see pictures of our sponsors and help us fund all 200 spots on the clinical trial. There are some really great stories to share with you as we go, and if you would like your loved one to be part of this movement, just let me know.

P.S. As for the rest of my day, I hope I got to spread a little sunshine into Carter’s family’s world, and I know that my brother and daughter spread a little into mine. I may have more to share on that later, too.

3 Changes Coming To Clinical Trials

Lessons Learned, Uncategorized

Clinical Trial Changes

If you have a “rare” cancer that doesn’t have a great standard of care, chances are you will be offered a clinical trial. To the general public (which is who we all are before that diagnosis is presented) clinical trials sound like a scary thing. To a cancer patient being told there is no cure, a clinical trial is a lifeline being tossed in a stormy sea. IF you catch it, it MIGHT help save your life.

So how do you pick a clinical trial? Well, first you have to find one that you qualify for. We’re going to assume that you have a doctor who is really helping you and is presenting you with some choices. So you have a couple of clinical trials and the “standard of care” to choose from. How do you decide? Right now, it’s a guessing game, but all of that will be changing rapidly as technology and open access data become more commonplace in the process.

  1. You will have more concrete data to help make decisions. I have seen some pretty impressive technology being developed by Clalit Research Institute in Israel that will help a doctor walk through a list of weighted questions with a patient that will help them make this difficult decision. (That program was developed using data made available from a clinical trial, and as more data becomes open access, I think we can expect to see more applications like this developed.) Each patient will be able to rate a list of possible side effects and based on their feedback, an algorithm will provide guidance on particular trials.
  2. You will know more about what “successful” patients look like. As data begins to become collected in one place, it is easier to compare patients on a genomic level. Researchers will be able to compile profiles of successful patients to help determine who has the greatest chance of success on a trial. My son participated in a clinical trial where one patient was doing really well. We had no idea if David would have the same results because there was very little data to tell us why the first patient was successful.
  3. The system will start to find you. Right now, clinical trials are found largely by patients and doctors sifting through websites like clinicaltrials.gov to find possible trials. In the future, doctors will enter your information into the computer, and then you will be pre-qualified based on your exact diagnosis and personal information. The computer will then present a list of potential trials that you can choose from.

This all might sound a little too good to be true, but the fact is, the infrastructure is already in place. Cavatica.org is an open access research platform that Dragon Master Foundation and others have been funding for more than three years now. It houses a patient’s full genome and biosamples from the patient, and sometimes the patient’s parents. It also links to the patient’s clinical records so we can have a longitudinal view of that patient. I believe it is the single most complete picture of a patient you can get, and we are working hard to make it available to everyone. (At the moment, it is largely working with pediatric brain cancer data, but the platform is built to expand as funding becomes available.)

Data like this can take a lot of the fear and guessing out of treatment, and it should lead us to more successful treatments and cures. We are on the cusp of a meaningful shift in cancer care, and I’m excited for this to start really impacting patients lives.

Home Checklist for Long Hospital Stays

Lessons Learned, Uncategorized

plain-white-house

We saw a checklist for things to do while you are on vacation, and it made us think of how many families end up out of town for treatment for long periods of time. If you are like us, those times may come rather unexpectedly! So if you are a friend or neighbor, this list might offer some good tips on things you could offer to do for a family that is gone for medical treatments.

  1. Set up a schedule for lawn maintenance. For families that don’t already hire out this service, setting up a system for them will be a big time saver, and may keep them out of trouble with the homeowners association.
  2. Check on their trash & recycling. These bins may fill up even while they are gone. We had people feeding our cats, taking out the litter, cutting the grass, etc. If those jobs are being done by neighborhood youth, they may not think to take the trash and recycling bins down to the street.
  3. Turn the water heater to vacation mode. Believe me, water heaters are the last thing on your mind when you have a sick loved one, but this could save them on energy costs. Most families facing long-term illnesses are counting pennies, so this is a nice way to help. Just make sure you leave a note in a prominent place to let them know that you changed the setting!
  4. Ask if they would like the water turned off to their house. During the winter, this may make a lot of sense, but not if they have pets that are still in the house. Again, if you do this, make sure to leave a prominent note. Even though they approve the action, they may not remember doing so by the time they make it back home.
  5. Ask if they would like you to randomly check on things. If there are no pets in the house, it may sit empty and quiet for long stretches. Leaving a random light on or parking a car in the driveway can give the appearance of activity that may ward off thieves. If it is winter, shoveling the walk definitely shows activity, and could be a nice touch if the family does get to come home.

Do you have any other tips? Please share them below.

 

How do you answer the hard questions?

Lessons Learned

Whenever I talk to a family about brain cancer, I tell them they can ask me anything. Normally they ask me sensitive questions about the end of life or navigating treatment. But sometimes, tougher questions come out. The toughest one is “how do you go on without your son?” There are many answers to this question. First, would be that my other family members need me. But second would be that my son would want me to be there for these people. It doesn’t make it any less bone-crushingly sad. On the contrary, walking through hell with these families is horrific and hard. It’s been six years since we heard the words brain cancer, a little more than four since David was taken from us. And while many point to the successes of the foundation and the progress in research that we’ve helped with, I can’t see that. All I see is the next person in treatment with no clear treatment path. I’ve been a fairly selfish person for most of my life but now all I see is other people’s need. David always had that sight so maybe he passed some of it along. 

Right now, somewhere a family is agonizing over their loved one’s last breaths. Right now, somewhere a family is hearing that the diagnosis is terminal. I know there will always be freak accidents that steal our loved ones away, but cancer isn’t like that. It’s a disease that we are on the verge of finding cures for, but each day that passes steals away another life. 

People struggle with the meaning of life, but I know that the thing that gives my life purpose is making the way easier for others. That used to be through simple things like doing my job well or making lunch for a teacher at school. Now it is by helping push scientific research forward. And I can do that even though I made a C in Mrs. Coley’s Chemistry class. And you can do it, no matter what your background is. We all have power. We all have a voice. Let’s use it to end cancer now. Right now.

THEN COMES SPRING

52 People To Meet Posts, Lessons Learned, Uncategorized

This post is written by my friend, Lori Hatfield Dickinson. Her words moved me, and I know several other people who could use them right now, so I asked her if I could share them with all of you.

12909463_10156736904935503_176181431140341521_oAs redbuds bloom and tulips turn their heads toward the sun, it’s bittersweet to think of the difference a year makes. It’s spring – literally and figuratively. After months of being quiet and reflecting, I feel a deep burden to write more honestly about my journey with God, grief and guilt.

Last year, fear was my constant companion. I saw spring as an ending. It was the end of a life I cherished with a man and family I dearly loved. There was no joy for us as the world bloomed because Michael was quickly fading.

Despite everything I said I believed at that time, I doubted God. I was mad. I was devastated. I made futile attempts to cut deals with Him, such as, “God, if you will just heal him, I will…” But mostly, I just felt abandoned.

Everything seemed like such a waste. A waste of a man with so much to give to the world – now unable to talk, to see, confused by simple instructions and confined to a chair. A waste of all the time investing in a marriage, a life, future plans that were not to be, all of which was compounded by the helplessness of watching my children lose their innocence without the ability to intercede. In March 2015, I wrote: “It’s as if we are standing on railroad tracks with a locomotive barreling toward us. I can’t stop it or move, so I’m constantly bracing for impact.”

It’s difficult to think anything good could come out having your heart being blown through your chest when you hold the lifeless body of the one you vowed to love and cherish the rest of your life. The primal cry from the depths of my heart when death came is something I will never forget.

In the ensuing days following the funeral I watched sunsets daily from Michael’s grave, sat in the darkness at night staring at his photo, read and re-read letters he wrote to me, smelled his clothes in the closet, and even at times, prayed the world would end. I was never alone, yet, I never felt more alone. Did I really believe there was a God and a Heaven? And if there was, where was He?

I began two “offline” journals. One, written directly to Michael. The first entry was the day he died.

June 15, 2015

You went to Heaven this morning.
I’m broken, lost, empty, alone.
I kissed you over and over.
I miss you.
For the first time since we met, you’re unreachable.
Our son is devastated. Grace is crushed.
I look toward where you’ve always been and the chair is empty.
I’m living my worst nightmare – I’m in a world you’re not in.

A little more than a week later I began a faith journal of sorts. It was a desperate attempt to work out whether God abandoned me or if I was the one who abandoned Him. I wrote to God…

June 26, 2015

When will you comfort me?
I am profoundly sad.
The truth is what I need most.
Give me understanding.
Strengthen me.
Be gracious to me.
Direct me.
Turn my heart.
Turn my eyes.

On June 30, 2015, I wrote and prayed this Psalms (31:10, 14-15):

I am dying from grief; my years are shortened by sadness. Misery has drained my strength; I am wasting from within. But I am trusting you, O Lord, saying You are my God! My future is in your hands!

I wanted to wholeheartedly believe. I just couldn’t.

Contrast that with my entry to Michael on the same date…

June is gone and so are you… I think I smiled more than I cried today when I talked about you.
I count the hours throughout the day – they go so slow. I like the days best where I sleep. I’m seeking God’s will. It’s my only hope for peace in all this. I wish I could be with you.

One day at a time sounds trite, but it’s true. God began opening doors before I even knew they were there. Through the journaling, sleepless nights, questions and tears – He slowly softened my heart. So many years I “served” God out of fear, obligation and pride. But, I didn’t truly know Him, love him, believe Him like I thought I did. It’s not always a priority to build a relationship with God when the world seems right. Now, I was desperate. And as a parent holds a heartbroken child – I started to feel God everywhere.

As I read my posts and journal entries I can see the progression I couldn’t see in the midst of the storm. I wrote only the following words on Sept. 1, 2015, from 19th century pastor Charles Spurgeon in my faith journal that resonates today…

“Don’t you know day dawns after night, showers displace drought and spring and summer follow winter? Then, have HOPE! Hope forever, for God will not fail you.”

God did not fail me, despite my disbelief.

He comforted me through Bible readings, books, church, people and prayer. He still does. He changed my heart and my priorities. I no longer view the world or problems the way I did before. A friend shared God was working faster in some areas in my life than others to make himself so obviously known I couldn’t deny Him. Maybe my heart was truly closed off that much.

In November, I wrote for the last time in Michael’s journal. The words captured what I’ve wrestled with and still do – the guilt associated with my disbelief, grief and survivor’s guilt:

Nov. 10, 2015

Passed our anniversary and approaching five months and the holidays. I don’t feel you around much anymore, but I’m hopeful you’re well.

I feel guilty for living and being able to love again. It doesn’t replace you, but I’m happy. That is a miracle… I’ve cleaned out the closet and I’m getting ready to remodel. I need the house to be different, the space to be new. I’m still sad when I think of you being so sick and the way you died. But, you have taught me how gracefully it can be done.

When I read back I remember all the feelings and emotions, but I also see how far I’ve come. While I may not feel you near, I do know God is, and my life is not finished.

I will never forget you. Your work here was finished, your legacy is big, and your memory will always live on in our lives through the love we now carry forward.

Goodnight Michael.

My pastor asked the question from a series titled, “When God Doesn’t Make Sense:” What if the scene of our greatest disappointment was the setting for our greatest moment? He used the illustration of Lazarus’s story – how with God, a waiting season is never a wasted season and God’s delays are not necessarily God’s denials.

Waiting is never wasted… It’s a paradigm shift for me. Waiting began on Sept. 27, 2013: Waiting on test results, waiting on radiation, waiting on chemotherapy, waiting on doctor appointments, waiting on planes, waiting on MRIs, and then, waiting on death. The time that passes after a terminal diagnosis is at a much different pace. Time passes quickly up to the point of death, then, it crawls – a day is a week, a week is a month and a month is a year.

However, waiting is not wasted when spring comes forth from winter. The trees roots are a little deeper and the world comes alive anew and refreshed.

It is difficult to bless and release the guilt of disbelief I carried in my heart for God through much of Michael’s illness; the guilt of being happy more than sad, seeing another spring… And yes, a measure of guilt for being in love with someone who knows my pain and walks the same path I do. That, in and of itself, could only be a gift from God.

But even as I wrestle with guilt and grief, I feel hope in the depths of my heart and soul.

Hope that God truly answered my prayer of healing for Michael in his perfect way and will.

Hope, that despite my actions, He didn’t or will never abandoned me.

And in surviving an experience I’d pictured to be unsurvivable – Hope that He isn’t finished with me yet.

 If you would like to read more of Lori’s writings, you can check out her blog here: www.thesuburbwoman.com

Plan Ahead in Honor of World Cancer Day

Lessons Learned

Screen Shot 2016-02-04 at 5.35.40 PMIt’s World Cancer Day, a time when lots of people are thinking about prevention and cures. I think it is a very hopeful day, when we can rally together and bring awareness to a disease that plagues our society. I’m completely convinced that we could rid the planet of this disease within our lifetime, and I’m heartened to hear more and more people uttering similar beliefs.

At the moment, though, the disease is at large. We never know who might get it or when. My son was 16 at diagnosis but became an adult (18) while fighting brain cancer. He went from a child that we made decisions for to a young man who should have made his own decisions. But cancer was undermining his decision making process. He struggled to make sense out of things that would have been simple for him a few months earlier. He was smart, but cancer robbed him of his confidence. His own mind played tricks on him, and he wasn’t sure of himself. It was a scary time for all of us, and though he was a technically an adult, we still made decisions for him to the best of our abilities. It’s hard to know what another person truly thinks – even if it is your child or your spouse. You do your best, but it is hard to keep the doubts at bay. The best step to avoid this situation is to be proactive. Make a plan before you need it, and you can be more at ease during life’s most difficult times.

I think most of us have the best of intentions when it comes to getting organized. We even take steps toward doing it. Some sort of filing system for your tax papers. Maybe a safe deposit box for important papers. But there are a lot of legal documents that most of us avoid. Wills. Advance Directives. Stuff that means not only are you an adult, but an adult who might one day die. Scary stuff. But it doesn’t have to be.

I found this really cool article from Everplan that walks you through a lot of those important adult things. It’s relatively painless, and it is super important. I talk to families all the time who spend grueling hours trying to decide what their loved one would have wanted if they could have decided for themselves. Brain cancer frequently steals away the ability to make good decisions – and it happens long before most people are prepared for it. So take a few minutes now, and check out this list. Make it a priority to work on it steadily for a few weeks, and before you know it, you’ll have all those “adult” things behind you.

Here’s the link:

https://www.everplans.com/articles/an-encouraging-to-do-list-for-getting-organized-in-2016?utm_source=Everplans+Newsletter&utm_campaign=11a47ed0c9-Cash_Windfall_Non_Members_1_15_2016&utm_medium=email&utm_term=0_fdb52c78d8-11a47ed0c9-147163513

By the way, I am not endorsing Everplan’s service and this is not an ad for them. I have not tried their service, so you’ll have to make your own decisions about that.

 

I Got Nothing

Dragon Master Foundation, Lessons Learned

  As I sit here with a riot of thoughts, I realized none of them were really cohesive enough to make a decent blog post. When I tried to find the right words, my brain came back blank. I got nothing. Why is that? 

Part of it is because what half of the world mostly wants to hear is the good and positive stuff we are doing to change the world. That’s fun to write, but it doesn’t seem to spur people to action. The other people in the world want to hear the horrible stuff. I’m a bit appalled at the number of supposed childhood cancer awareness advocates on social media who really don’t want to share anything other than pictures of dead and dying kids. It’s disgusting, and yet they have tons of followers.

Tonight I don’t have a story that would fall into either of those categories. There was no amazing advancement today. None of the kids I’m following died – praise Jesus! No, today was simply a day where parents I know watched their children play or eat or go to school, knowing that there is a monster growing inside of them. A savage, bloodthirsty monster slowly changing their brain. These parents live every day in a place of panic you can only know if you have been there. Doctors look at you with sad eyes. You know the look most people get when they go on hospice, or run out of treatments. Our kids and their parents get those looks on the day of diagnosis. Because while there are treatments, they are not highly successful. They try them because once in a while, the treatment will work. If we could see each child on a molecular level, we might be able to figure out why one child lives while many others die. That’s what Dragon Master Foundation is trying desperately to do. And we are desperate. We know the panic. The fear. The absolute powerlessness. 

I spend a lot of my time trying to help people understand that we are at a critical juncture in time. We have a chance to impact lives in the most real way imaginable. The work we are doing alongside many partners will impact the way research is done. We are flipping the model. The old way isn’t good enough. We have other tools – better tools- that are within our reach. We could get there faster if people would just pay attention. It is hard to remember to do something like vote on social media every day. But it’s not nearly as hard as facing someone with a cancer diagnosis knowing you didn’t even try.

Tonight I feel both blessed and disappointed. Blessed by so many people who went truly out of their way to help us with our bid to win $500,000 from Microsoft. And my heart is sorely disappointed in those who didn’t make the slightest effort to help us in this or other attempts. You’re busy. I get it. I used to be “busy”, too. Ironically, I’m busier now that I have ever been in my life. It won’t bring my son back. But it will save someone else’s child. How soon it does is up to each of us. 

Maybe I Should Take Up Surfing

Lessons Learned

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.