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.

 

 

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.

Commitment vs. Devotion

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UncleJerry&AuntDonnainDoorway

I was a child when my uncle Jerry died. I remember him through that lens… they are all fond memories. He was the jokester in our family, always ready with a harmless prank. And they were harmless, that was part of the appeal. You could trust him. He didn’t go too far.

He was a successful businessman and well loved in the community. He died of a massive heart attack at age 44. His funeral is one of the first I ever went to. Watching my grandmother and aunt (his wife) deal with his loss was my first real lesson in grief. There was no crazy wailing, although I’m sure  they wanted to rage out. My aunt was fairly stoic. Not cold, just stunned. My grandmother cried, and I remember a cousin telling me that she heard our grandmother say, “I just want you to open up those big blue eyes and say, ‘Mama’ “ as she stood over his coffin.

If there was a family member who didn’t cherish him, I was unaware of it. He was my mother’s brother, and I guess in some families my aunt might have drifted away, but not in ours. She was a fixture at my grandmother’s house for decades – until my grandmother died.

When I got a little older, my aunt would often include me and my cousins in trips to her beach house. (She was not the only generous family member who did things like this, but this is a story for her.) I learned how to fold a fitted sheet on one of those trips. I ate cauliflower for the first time. I had a sundae with both chocolate AND caramel on it. The best kind of memories were made.

At some point, years after my uncle had died, I asked my aunt why she wasn’t dating. She was so fun and such a vital person. She told me that my uncle was the only one for her, and then said, “Do you remember his laugh?” She had such a great smile on her face when she said that, and I kind of knew then that what they had couldn’t be replaced. She might find a substitute, but she was content with her memories of him.

As it turns out, she never married again. I think she has been happy. At least she always seems that way to me. Her two daughters gave her lots of grandchildren, and she has always remained as active as her circumstances would allow.

I thought of her this morning. Of her relationship and the example she set with how she has lived her life. And it came to me that she was in a devoted relationship with my uncle. So many settle for “committed”, when we should really wait for devotion.

What’s the difference? Well, the dictionary says that committed means “to pledge (oneself) to a position on an issue or question; express (one’s intention, feeling, etc.)”.

By contrast, devoted means, “zealous or ardent in attachment, loyalty, or affection.” (Don’t confuse this with obsession… that’s a whole other story.)

But to me, devotion is when your unconscious thought leads you to care for someone. It’s the way a good parent feels about their child. I am truly blessed to be in a devoted romantic relationship, and people ask about it all the time. I’m not sure what they see, but they can tell it’s different. I struggle to put into words how it feels because it always sounds arrogant, and it is not a boastful thing. However, so many people settle for committed, that I wanted to try and put it to words for you.

• Love is preferring one person’s laugh to everyone else in the world.
• Love is fun. It’s like seeing a blockbuster summer film that no one else has seen yet. It’s so amazing and awesome that you want everyone else to experience it, too.
• Love is taking care of their needs before your own – not because you are being nice, but because they are the first thing on your mind.
• Love is 100% reciprocal. (I used to think that one person always loved more than another, but I don’t believe that anymore.)

• Love is not Ross and Rachel from “Friends”. If one partner is acting like Ross, there is no way that relationship will work long term without the other person being truly miserable.
• Love is not work. I’m probably going to irritate a lot of people with that statement, but I owe it to the young people I know to be honest about this. When you are with the right person, it really isn’t work. I know it sounds corny, but you really want the other person to be happy so much that you find the compromises pretty easily and quickly.
• Love does not control you. It won’t tell you who to choose as friends or how to spend your time. (“Honey-do” lists not withstanding.)
• Love builds you up. I can list a million reasons why I love Richard, but the most shocking thing about our relationship is that he can also list a million reasons about me. We both tell each other those things all the time. I joke that I have to harass him a little just so his ego won’t be too big, but I adore him and he knows it.
• Love isn’t jealous. Not just of another person, but of anything. We don’t worry about each other’s loyalty. We both have healthy relationships with friends of the opposite sex. Neither of us are worried about those relationships because we are devoted to each other.

There are lots of other things that love is or it isn’t. If you have a doubt in your mind, then that probably isn’t the real thing. I know that is harsh. I’m sorry for that. I  know a lot of people in committed relationships who have built happy lives for themselves, but it isn’t the same as being devoted. If you still have that choice in front of you, my wish for you is that you hold out for devoted.