Siblings have it the worst

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I’m not sure what I really want to say here. I’ve watch my daughter try to navigate life without her best friend for the better part of 7 years, and despite how much she has accomplished, I know there’s a big gaping hole. She got to spend almost her whole childhood with a big brother, and in this world we are now part of, that’s a big deal.

Today we did something that I thought would be really cool. We took a 12 year old to Walt Disney World so she could run her first 10k. She’s running for awareness for brain cancer research because her brother died before either of them really got to middle school. She was excited. We were excited. But somehow, after getting here and looking around at the peaceful environment of the Animal Kingdom Lodge, it just became sad.

It’s sad because her brother who loved lions and nature is not here to see it with her. It’s sad because in this very peaceful place, there is no peace inside her. Living without your sibling is torture. Yes, they are in a better place, but as an adult I can barely wrap my head around that, so how could a kid?

Every day she lives is tainted by senseless loss. Most 12 year old girls want to be teachers or models. She wants to be a neurosurgeon to try and save kids like her brother.

She and my daughter know a loss that we want to save others from knowing. It motivates her and as much as it causes pain, I believe it will also cause a change in our world.

She hasn’t hit her fundraising goal yet because she is still learning how to ask people for help. It’s not an easy thing to learn, and it’s almost easier when all you want is money. But what she needs more is someone to sit beside her and feel the pain. Believe me, writing a check is so much easier.

Strength for David’s 25th Birthday

David's Journey, Dragon Master Foundation, Uncategorized
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I’ve posted this same info in a few other places, but if you are a loyal blog reader, you get to see it with a different picture. This picture is special because not only were we celebrating David’s birthday, but he was having one of his favorite meals and wearing a signature Aloha shirt. That big smile – so David. So if you keep track of us here, thank you. Hope your year is filled with mashed potatoes and orange chicken. ❤

Tomorrow is David’s 25th birthday. There is no party. No cake. But there may be presents. Not for him, per se, but for all the people he cared about. People he didn’t know. People he will never have a chance to meet. For David’s birthday tomorrow, we are hoping that you will make a small but meaningful commitment to change the outcome for people diagnosed with cancer. For David’s birthday tomorrow, I feel certain he would want you to give the gift of hope.

One of the most impactful things you can do is to make an ongoing commitment to research. I’ve thought about this a lot, and it really doesn’t take much to really make a difference over time. Foundations we are friendly with tie a donation number to how many kids are diagnosed a day, or how many pass away. In our monthly giving program, called Strength in Numbers, we suggest some amounts to get you started with monthly giving. Those are real and meaningful numbers, but we thought we would try something different.

Most of us have lost someone we love to cancer. If you have, what would you do if you could see them again? Maybe you’d give them a hug or just tell them all the things you didn’t get a chance to say. Maybe you’d take them out for a cup of coffee, or a beer, or… a Diet Virgin Cuba Libre. (Learn the back story on that here and here.) Pick a beverage or a meal that is meaningful to you and pledge that amount monthly (or weekly if it is a bargain). Then schedule a recurring donation. You won’t have to think about it, but you’ll be making an impact every month.

David died before turning 21, so I don’t know if he would have added rum to that Cuba Libre or not, so I’m going to go with one of his favorite meals. He loved Panda Express and always got an extra entree. So that would be $8.30, in my case weekly because I think we’d probably go to lunch once a week. I’d give that in a a heartbeat if I could share it with him, so instead, I’ll give it so that some other parent might get to continue sharing a meal with their child. Every week, I will know that I’m putting us a little bit closer to saving someone. I can’t hug David anymore. I can’t buy him lunch. But I can give hope to families who so desperately need it.

For those of you who have already made a commitment, thank you so much! For those of you who think you can’t have an impact, please let me assure you that you can. Even $5/month gives us something to budget with. Pooling our resources in this fashion means that we can have a reliable source of funding for promising research when we first become aware of it, instead of having to wait for the next big fundraiser. Data from one individual is great, but it really becomes powerful when combined with others. It is our commitment to bring our Strength in Numbers folks into a more intimate conversation around Dragon Master Foundation’s work and mission. You can give us feedback on the work we are doing and you will become part of the voice of these people who frequently can’t advocate for themselves.

Start your monthly support here: https://www.dragonmasterfoundation.org/strength-in-numbers/

 

Blindsided

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Here’s the thing about grief, it doesn’t care what you’re trying to do. You can be walking along, living your life, pretending things are nearly as good as they used to be, when it just comes around a corner and blindsides you. You think you can manage and then, wham! It brings you to your knees.

Today, I flew to Pittsburgh for meetings tomorrow with doctors who are sharing their data. I’m excited about it because it gives me an inside look at how the CBTTC member hospitals collect and send in their data. There’s just one little problem. It’s also the hospital where we were told the clinical trial wasn’t working for David. It was the beginning of the end, and we all knew it.

I thought it would be ok. After all, when we left Pittsburgh, David felt great. We were still in that crazy world where they tell you your child is dying but he looked fine, felt fine. And as long as you have a treatment plan, you feel like you might beat the odds. And then comes the smack down.

In many ways, we are so appreciative of Children’s Hospital of Pittsburgh. We’ve told them that – at meetings that were far from the building I’m going to tomorrow. I know that we had more quality time with David because of the work they did. But somehow, being back on the streets that we traveled with him, it felt like he should still be here. I mean, every day, it feels like he should still be here, but somehow it was just so much more overwhelming being back here.

It made me think of the many friends I have who spend their days in hospitals where their children died. They get up each day with the resolve that they will make the day a little brighter for a family traveling the path they know too well.

When I think of that, it makes my days seem easy. When I think of that, I know I can face tomorrow with a smile for those who have dedicated their lives to trying to save our children. The truth is, none of us want to be in that room tomorrow. None of us want to be dealing with the reality of childhood cancer, but we lift each other up and do what we need to do to try and save lives. Until there are cures for all.

Breaking the silence

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So much of what happens to cancer families happens in silence. You may see social media posts, but they do little justice to the minute by minute terror that is constantly plaguing these families. A recent post by a Facebook friend gives a pretty good picture of the reality, so I’m sharing it in honor of Childhood Cancer Awareness Month.

Childhood Cancer Awareness Month Day 18: madness

Watching your child lose their abilities day by day, or even faster, right in front of you. Seeing the incomprehension in their eyes and, besides showing love and hollowly saying everything will be ok, not being able to truly make anything better.

After your child’s tumor progresses and your doctors stop returning your calls. True that they don’t have any more answers but so heartless nonetheless.

Hearing the stories of friends and family who came over to cook meals, clean house, babysit, take photos, launch fundraisers, play music, spend countless hours doing research and speaking with doctors on that other family’s behalf..then comparing this to your own reality.

When after an hour of coaxing and coddling your child manages to get down the pills you hope could help extend their life only to throw them all up immediately after—bad hiccup timing or stubborn refusal? The outcome is the same.

Being denied clinical trial access and off trial medications that could extend your child’s life, due to bad timing, lack of clout carried by your medical team or more often the company/trial’s cold blooded decision to prioritize obtaining future data points over the life of your child.

Cackling madly to the ceiling when faced with yet another setback, ankle deep in the latest bodily fluid that needs disposal before you can even begin thinking of cleaning your house that looks like a) war zone b) crime scene c) hoarder’s lair (pick whichever fits best).

Dug deep furrows in both wrists watching my love get re-radiated today, head bolted tight to the machine, as we fight two tumors this, our last, time around.

Finally dozing off to sleep before being jarred awake by a bizarre sound coming from my child’s throat which sounds like ghastly choking, only to be reassured by the tone of her voice (words are now too indistinct to understand) that she’s actually ok, it was nothing.

These are just a few of the stones in the DIPG path that trigger madness.

This is how it feels at the moment….and my beloved child is still here, for now.

The alternative is unimaginable.

Gut punched

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I sat with a family today. People think that I do that a lot, but I don’t. Mostly I don’t because the families we help are spread far and wide. But the other reason I don’t is because it is hard. It is really, freaking hard to go sit in a hospital room and act like the world somehow makes sense.

Whenever I have the opportunity and muster the coverage, I’m equally terrified and honored. It triggers every bad memory I have, but I feel so honored that I am even a blip on this person’s journey.

Today, the journey is for a six year old. He is beautiful. I mean, he is cute, but there is something about his spirit that is just beautiful. His mom is open and honest and it tore my heart to shreds. It is 2018, and we have only inched forward with research progress since David died. I truly believed we would be saving lives by now, but we aren’t. We just aren’t.

I feel the shifts underfoot. I can see the change on the horizon. But it isn’t coming in time for this family today. And that is heartbreaking. And I’m asking you, please, if you want to help speed cancer research, STOP DOING THINGS THE SAME WAY!!!

Innovation is coming from collaborative science, and that is NOT what most institutions are funding. Please don’t just blindly make a donation. Your money has power!! Even if it is only $5, it has a voice! Your donation is a vote, and we need more people to pay attention. Vote for what matters.

We have 17 hospitals who are sharing data, but the funding for the sharing doesn’t come from those hospitals. It comes from foundations like Dragon Master Foundation. It comes from passionate people like you, who are tired of the marketing hype and want to see results. It comes from people like me who work daily to bring about this change.

We might not get answers in time for this child. That is not ok. We need your help to do better.

P.S. I don’t really have a polished ending for this. This isn’t a marketing piece. It’s my blog, where I try to give you a real glimpse of life in brain tumor world. Sometimes it’s just raw.

The Force Is Stronger Now

Dragon Master Foundation, Uncategorized

NoahsLightGoldRibbon

Sometimes on this cancer mom path, you meet people who are on a similar journey. When I first met Amber Larkin, and saw the work she was doing, I knew that I wanted to be a part of that effort. My daughter and I volunteered with Noah’s Light Foundation, even after we had started Dragon Master Foundation. Our missions were so similar, and our boys had so much in common, that working with them just felt right.

Recently Amber came to me and told me that she has a different path in mind for Noah’s Light, and she asked if Dragon Master Foundation would be willing to take on some of the work she had started with their foundation. What a very special request that was! To say I was honored would be an understatement. I have a lot of respect for what Noah’s Light has accomplished, and like the Jedis that Noah and David loved, they are passing their knowledge and wisdom on to us.

Amber tells the story best so I’ll let you read all about it here:

http://www.noahslight.com/the-new-light-a-note-from-amber/

Thank you for being part of our journey so far, and we are excited about all the new things in store for 2018.

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.

 

Recognition for “Putting Kids First”

Dragon Master Foundation, Uncategorized

Gabriella Miller Kids First Pediatric Kids First Research Program

We are so proud to share the announcement that the Center for Data Driven Discovery in Biomedicine (D3b) has been selected to lead the NIH’s Kids First Data Resource Center. D3b is based at Children’s Hospital of Philadelphia, and they along with a number of other partners, including Dragon Master Foundation, will be a integral part of the new, collaborative effort funded by the National Institutes of Health Common Fund to discover the causes of pediatric cancer and structural birth defects through the use of big data.  The Center will be known as the “Kids First Pediatric Data Resource Center” (DRC).

This effort goes hand-in-hand with the work we have been doing on Cavatica, and as a liaison to the Children’s Brain Tumor Tissue Consortium’s Scientific Advisory Committee, I will be attending meetings for the next three days related to this and other collaborative efforts to take place in the coming year. We are so excited about the influx of resources from NIH, but  it does not take any of the pressure off of the work we are already funding. This means that the project will grow bigger and faster, but there is much work to be done on our own efforts. For example, the clinical trial that we have committed to fund still needs to be funded.

We want to take this opportunity to recognize all of the hospitals, foundations, individual doctors and researchers, and families who have worked together to get us this far. This really is a massive undertaking that we believe will forever change the way we conduct medical research. Please take a moment to read the full press release here.

 

No One Left Behind

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May was a whirlwind of activity, and while many exciting things are happening, I think it is important to keep in mind just how very far we have to go. We are at war with cancer, but we are forgetting one of the most important rules of war: protect your children first. If you think about it, in dangerous situations, we always protect our children first, but that isn’t true of battling cancer. Funding for pediatric cancer research only gets 4% of the NIH budget.

At Dragon Master Foundation, we don’t wait for government funding to do the work that we believe in, but we know that our work could be done so much faster if there was government funding behind it. That’s why this message from Kids v Cancer is so important. Take a moment and give it a read.

 

Sometimes Choosing A Cancer Treatment Isn’t The Toughest Decision

52 People To Meet Posts, Uncategorized

 

Addison

Addison Adams

 

Hearing that your child has cancer sends your world into a tailspin. Hearing that they have a lethal form of brain cancer that really has no treatment path is devastating. It’s the kind of thing people carry with them for the rest of their lives.

One form of brain cancer, DIPG, has been had very few treatment advances in decades. A big part of the reason for this is that so little is known about how the cancer develops and grows. Typically, biopsies are not performed because of the tumor’s brainstem location, and what scientists do learn is often from tissue taken after a child has passed away. That is an issue, too, because it is a difficult conversation for most medical practitioners to have with these already vulnerable families.

We reached out to a very generous family who donated their daughter’s tissue to research, and they agreed to share their story. We hope that it will inspire others to think about whole brain tissue donation.

Interview with Kindra Adams, mom to Addison

When did you first start thinking about donating Addison’s tissue? 

Addison’s father and I knew from diagnosis that one way or another Addison would be tumor free.  We learned more about tumor donation after a Facebook page for Katherine The Brave posted about it.

Yes, Katherine the Brave’s page is well known in childhood cancer circles. Did you discuss the donation with people in your family and friends?

Yes, we discussed it with family and friends.  Everyone seemed very supportive of our decision.  We were going to do it no matter what, but it helps to have everyone on board.

Do you wish you had known more about tissue donation sooner?

Yes, it seems like information on donation is pretty hard to find unless you know about it already.  If it wasn’t for Katherine’s page, I’m not sure we would have known anything about it.  I’m also not sure we would have been real receptive to it if someone approached us. That’s what makes it more difficult to get the information out there.

What were your biggest concerns around donating her tissue? My biggest concern was that it wouldn’t grow.  That after it was removed and transported, that would just be the end.  I really wanted it to survive and hopefully help someone.  I know it might sound unusual, but I was also worried about how it would affect her appearance.  We wanted to be able to have an open casket, and it was nice to know that the incision wouldn’t be visible.

As a mom of a child who died from brain cancer, I totally get that. I don’t think it is an uncommon concern at all. Parents want to protect their child in every way, and this is no exception. Who answered your questions about the process? Dr. Monje .  We had been in contact prior to this because I was looking for clinical trials for Addison.  When I finally sent her the e-mail about donation, she set up a time and called me.  She explained everything, and we stayed in contact.  Even to this day, I can send her an e-mail and see how everything is going.

Dr. Monje’s lab contributes data to the open access data platform called Cavatica. Although Dr. Monje’s lab commits to putting 75% of the tumor tissue they receive into this platform, it is possible that Addison would have been part of the 25% that did not get shared. You were able to verify with Dr. Monje that Addison’s tissue was indeed shared, though, which is really cool.

Did you know much specifically about what her tissue might be used for?  Yes and no.  I know at the time of our phone call, Dr. Monje gave me lots of information. Unfortunately, my memory retention hasn’t been the best lately.

Yes, memory retention is frequently a problem during the grieving process. I definitely had some issues with that, too. How does in make you feel knowing her tissue is in the open access database, Cavatica?  Honestly, I’m thrilled that Addison can be a part of something this important.  We have learned that Addison is in the 20% of DIPG kids that are lacking a particular mutation so that makes her part in Cavatica even more important.

As a parent who also has a child with data in Cavatica, I can say that it does give you some comfort to know that their tumor tissue may help save another child’s life one day. 

Cavatica is the platform for data sharing that will be used to empower an upcoming DIPG trial being launched by the Pacific Pediatric Neuro Oncology Consortium. You can read more about that here.