The Top 9 Things You Need to Know When Your Child is Diagnosed With Cancer

David's Journey, Dragon Master Foundation, Uncategorized

carpeWhen David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

http://abc2.org/guidance/find-care – to find out which hospitals specialize in brain cancer – more on this later.

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.  I don’t think it is practical to expect a doctor that deals with many types of cancer  to stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

Brain Cancer Awareness Month Needs You!

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DavidWearGray

Brain Cancer Awareness Month is, at best, bittersweet. A time for us to bring awareness to a disease that takes a devastating toll on families. It is a time for us to celebrate the victories of those who are living with this disease and at time for us to remember those who were taken by it.

I will be posting a lot this month about the brain cancer warriors who have crossed my path, and I will try to bring awareness to the disease and to events happening around the country. Everyone can wear grey and talk about brain cancer awareness month, but hopefully, by posting this list, you may also be able to find an event near you to attend. Please also consider changing your social media images to a grey awareness picture. If you Tweet, I’d love to connect with you on Twitter. Tweet me at @AmandaHaddock and you can use hashtags #btam (for brain tumor awareness month) and #BrainTumorThursday – a day each week throughout the year that we raise awareness.

If you know of an event that isn’t on the list, please message me so I can add it. I’m pretty sure I’ll be adding events all month, so please bookmark this list and check back!

Anywhere
May 8 – Go Grey for a Day – Make sure you wear grey on this day and tell people that you are doing it for brain tumor/cancer awareness

May 15 – Webinar to learn about the latest in collaborative brain cancer research – http://bit.ly/1dLwolc

Tune in to Catch The Brain Wave each Friday from 6-7pm EST on WESS 90.3 FM LIVE in Pennsylvania!! Listen on the web here: http://tunein.com/radio/WESS-903-s28605/

Look for ways you can contribute to your favorite organizations every day. There are too many organizations to list all the possibilities, but here are some ways you could help Dragon Master Foundation:
– Following us on FacebookTwitter, or Pinterest
– Choosing us when you shop on AmazonSmile
– Recycling for us with our free shipping program
– Register your Dillons card using our #11547 – a lot of grocery stores have this option. If you don’t see your favorite foundation listed, tell them, so they can get signed up!
– Do your intent shopping with iGive

Also, check your favorite foundation’s website for other promotions that may be happening. For example, Dragon Master Foundation has the opportunity to win a unique piece of dragon art created just for the foundation! Check it out here.

Ok, now for a state by state listing of activities you can participate in:

California
May 2 – Bay Area Brain Tumor Walk – http://events.braintumor.org/bay-area-brain-tumor-walk/
May 3 – Los Angeles Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1980&pg=entry#.VUMDZ2TBzGc
May 8 – Striking out Pediatric Brain Cancer with the Los Angeles Angels – http://www.eventbrite.com/e/striking-out-pediatric-brain-cancer-with-the-angels-maxlove-project-and-the-mckenna-claire-tickets-16325952363
May 16 – Come Fly With Me Party with a Purpose – http://mckennaclairefoundation.org/events/come-fly-with-me-5th-annual-party-with-a-purpose-051615/
May 30 – San Diego Brain Tumor Walk – http://events.braintumor.org/san-diego-brain-tumor-walk/

Connecticut
Sharing Hope Walk the Walk Talk the Talk – http://hope.abta.org/site/TR?fr_id=3330&pg=entry

Florida
May 2 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-fl/
May 9 – Prohibition Gala – http://btagala.com/

Georgia
May 5 – 11 Annual JSL Charity Classic – http://www.jslcharityclassic.com/
May 31 – Bowl for the Bull – http://www.gofundme.com/bowlforthebull

Illinois
May 9 – 17th Annual Vernon Hills Brain Tumor Walk – http://www.abta.org/get-involved/events/17th-annual-vernon-hills.html

May 13 – Dine out at Kouri’s in Pekin – https://www.facebook.com/events/840909205993896/
May 15 – 3rd Annual Act for Alan Fundraiser – http://www.abta.org/get-involved/events/3rd-annual-act-for-alan.html
May 17 – Join the Voices 5K in Chicago – http://www.voicesinmotion.org/site/TR?fr_id=1291&pg=entry

May 30 – Cocktails for a Cause – https://myab.co/events/EC/

Iowa
May 1-3 – Lambda Chi Alpha Teeter Totter – https://www.indiegogo.com/projects/lambda-chi-alpha-teeter-totter-a-thon-for-abta
May 9 – Race for Hope Des Moines – http://www.raceforhopedsm.org/

Kansas
May 3 – Avengers Age of Ultron Movie Screening – http://www.dragonmasterfoundation.org/events/

Massachusetts
May 2 – Brain Tumor Alliance 5k – http://events.braintumoralliance.org/site/TR?fr_id=1160&pg=entry
May 17 – Boston Brain Tumor Ride – http://events.braintumor.org/boston-brain-tumor-ride/

Michigan
May 2 – BT5K – http://hope.abta.org/site/TR?fr_id=3183&pg=entry

Minnesota
May 17 – MN Brain Tumor 5k – http://mnbraintumor5k.com/

Mississippi
May 2 – North Mississippi Kilt Walk & Fun Run – http://www.kiltedforbraintumors.com/

Nevada
May 16 – Desert Gray Matters – http://wizathon.com/walktoendbraintumors-nv/

New Jersey
May 30 – National Walk to End Brain Tumors – http://www.wizathon.com/walktoendbraintumors-nj

New York
May 17 – 11th Annual Team Billy Ride & Walk for Research – http://www.braintumorcommunity.org/site/PageServer?pagename=BTR_SS_Homepage

North Carolina
May 3 – NC Triangle Ride for Kids – http://pbtf.convio.net/site/TR?fr_id=1990&pg=entry#.VUMC6mTBzGc

North Dakota
May 24 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-nd/

Ohio

May 18 & 19 – Joggin for the Noggin Benefit Dinner – https://www.facebook.com/events/350866698444089/

Pennsylvania

May 1 – Brews for Brains – https://www.facebook.com/events/1377664142561766/

May 2 – Avengers Age of Ultron Movie Screening – https://www.eventbrite.com/e/the-avengers-age-of-ultron-2015-3d-private-movie-screening-at-king-of-prussia-imax-and-stadium-16-tickets-15957153275

May 24 – BRAINFEST – https://secure2.convio.net/abta/site/Donation2;jsessionid=0C748EA3B0B8BED03111BA4D4F56B5A0.app274b?df_id=6720&6720.donation=landing

Utah
May 25 – National Walk to End Brain Tumors – http://wizathon.com/walktoendbraintumors-utah/

Virginia
May 29 – 3rd Annual Lambda Chi Alumni Clay’s Day – http://akidsbraintumorcure.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=515

Washington DC
May 3 – Race for Hope Washington, DC – http://www.braintumorcommunity.org/site/TR?fr_id=2360&pg=entry

Washington
May 3 – Seattle Brain Cancer Walk – http://www.braincancerwalk.org/
May 16 – BT5K – http://hope.abta.org/site/TR?fr_id=3182&pg=entry

May 30 – Bellingham Brain Cancer Walk – http://braincancerwalk.org/bellingham

It is my hope that these events will inspire you to get involved in awareness events throughout the year – not just in May.

Here’s What’s Happening In Your Neck of the Woods

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IMG_4943

May is here!! I know a lot of you would like to get involved in an event, but it is hard to know where events are being held. Last year, we had a pretty decent list on the Operation:ABC “Annihilate Brain Cancer” Facebook page, but this year, I haven’t had the time to update there. It is quite a bit faster to make a list on the blog, so I’m going to list stuff here. These are just May events, listed by state. Please share with your family and friends in these areas so they can help spread awareness, too! If you know of an event that I missed, please feel free to list it in the comments.

California

Brain Cancer Movie – Studio City, CA, All May – Help fund a movie about brain cancer. Make a donation here: http://www.gofundme.com/aimoore

4th Annual (Aloha themed) Party with a Purpose – Huntington Beach, CA, May 2nd – Buy tickets in advance: http:///www.eventbrite.com/e/mcfs-4th-annual-party-with-a-purpose-aloha-friday-tickets-10579157545

Bay Area Brain Tumor Walk – San Francisco, CA, May 3rd – For more info, visit: http://events.braintumor.org/bay-area-brain-tumor-walk/

Connecticut

Purchase an awareness t-shirt to support the Connecticut Brain Tumor Alliance at this link: https://www.booster.com/mariagoesgray

Illinois

2nd Annual Run/Walk – Lincoln Park, Chicago, IL, May 4th – Full details here: http://www.voicesinmotion.org/site/TR?fr_id=1191&pg=entry

Boxing and Beer for Brains! – Northbrook, IL, May 16th – Get details here: http://www.braintumor.org/join-the-fight/find-start-an-event/events/boxing-and-beer-for-brains.html

2014 Chicago Half Marathon & 10k benefitting Northwestern Brain Tumor Institute –  Chicago, IL, May 18th – Register to run for NWBTI here: http://nmh.convio.net/site/TR?fr_id=1210&pg=entry

Iowa

Race for Hope – Des Moines, IA, May 10th – Find out more here: http://www.raceforhopedsm.org/

Head for the Cure – Des Moines, IA, May 18th – Get details here: http://www.headforthecure.org/des-moines-ia/hftc-des-moines

Kansas

Gamesgiving – Wichita, KS, All May – Mention Dragon Master Foundation when you pay for Mobile GameDen services (GameDen, laser tag, archery tag, & human hamster balls) and 50% of the proceeds will go directly to the Dragon Master Foundation. Certificates are good for an entire year. For booking details, go to http://www.mobilegameden.com

Massachusetts

Make a Blast Against Brain Cancer – Charlestown, MA, May 17th – Buy tickets here: http://www.makeablast.com/EVENT_INFO.html

New York

Irwin Berson Art Exhibit – East Meadow, NY, May 4th – Get info here: http://www.braintumor.org/join-the-fight/find-start-an-event/events/irwin-berson-art-exib.html

Texas

Head for the Cure – Plano, TX, May 10th – Find Info here: http://www.headforthecure.org/north-texas/hftc-north-texas

Washington

Pedal It Forward 1st Annual Bike Ride for Brain Cancer Research – Seattle, WA, May 3rd – Registration info can be found here: https://kathigf.ejoinme.org/?tabid=520387

Washington, DC

17th Annual Race for Hope – DC on Sunday, May 4th – For more information, please visit: www.curebraintumors.org.

Wyoming

Dinner/Show benefitting the Olivia Caldwell Foundation – Cheyenne, WY, May 16th – More details can be found here: http://www.oliviacaldwellfoundation.org/#!upcoming-fundraisers/c48r

 

Snowballs in May!

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Wear Grey For David

Not sure if you’ve seen the weather, but Kansas had snow on May 2nd. SNOW! In MAY! That’s a little crazy, but it is a good representation of how different THIS May is going to be.

There has been a lot going on for brain cancer advocacy, and it is only the 3rd day of the month! I’m so excited to see the real differences we are making! All day yesterday, I was getting updates on stuff, and I felt like my list from yesterday was inadequate by the end of the day so I made a new list.

Let me remind you that this is just a small sampling of what is going on out there. We are trying to post stuff on the Operation: ABC “Annihilate Brain Cancer” page, but please forgive us if we miss something. Likewise, if you know of something we can help promote, please let us know.

Here’s my updated list of things you can do no matter where you are:

1. Wear Grey. Wear Grey Every Day in May. Ok, you don’t have to wear ALL grey. But wear something grey EVERY day. Tell people why you are doing it. Do it for awareness. For solidarity. Do it to show the world that fighting brain cancer is important. Grey isn’t a very noticeable color (like pink) so it is going to take A LOT of grey to get noticed. But we can do it! #GreyAllMay

2. You can donate via IndieGoGo to make sure the concert is a big success:
http://www.indiegogo.com/projects/concert-for-the-cure-wichita/x/3067213?c=home

3. You buy something in the Origami Owl fundraiser that is going on throughout the month of May:
Origami Owl designer, Karletta Pergeson, has offered to donate 10% of your purchases made between now and May 30th to “Concert For The Cure”. Origami Owl is a unique line of lockets. Every Living Locket™ is custom designed with charms that tell the story of your life and represent the things you love. They even have a grey brain cancer awareness ribbon!

Please place your orders online at http://www.momoftwo.origamiowl.com. There you will find everything you need to design yourself a beautiful locket! The website is set up in an “a la carte” style, where you choose which locket you would like, then pick the chain, charms and plate you want for the inside. And if you choose, you can have dangles to hang outside the locket. Upon check out please select “Concert For The Cure” so that your purchase will be counted.

4. Take a trip! Eaglewings Travels will donate 10% of any bookings in May to Concert for the Cure! You don’t have to travel in May – just book the trip before the end of the month!

How awesome is that? Take a wonderful vacation and know that you are helping others at the same time!
To book, you can email Colleen Atherton, Owner at catherton@cruiseholidays.com or call her at
316-214-5426 http://www.eaglewingstravels.com

5. Change your Facebook profile pic. If you haven’t seen an image you like, you can find a few here:
http://campaign.customink.com/grayinmay

6. Go like the Operation: ABC “Annihilate Brain Cancer” page (https://www.facebook.com/OperationABC). It lists events around the country and tries to give a unified voice to the brain cancer family. (Oh yeah, we’re a family. You need everyone you can get to help fight this beast.)

7. Sign up as an advocate with the National Brain Tumor Society (http://www.braintumor.org/advocacy). This is NOT scary. You are adding your name to a mailing list, and they will email you when they need your help. “Help” usually consists of using an online form to write your Congressman and encourage more funding for research. Simple as that.

8. Help make a cool postage stamp that says “Stamp Out Brain Tumors”. All you have to do is sign the petition here: https://secure2.convio.net/bts/site/SPageServer?pagename=AwarenessStampPetition

9. Send a Tweet. Novocure will donate $5 to the Chris Elliott Fund (a charity that helps patients and families with GBM diagnosis and supports brain cancer research) when one of their tweets are retweeted – using the hashtag #TuneIn2GBM Look for them on Twitter, @EndBrainCancer ! Follow them, then retweet our messages that uses the hashtag #TuneIn2GBM.

To retweet: put your mouse over the message. A small menu pops up at the bottom. Click the one that says RETWEET. This will copy our message to all of the people who follow you. Then follow up with that tweet by posting a message to your followers, asking them to retweet the message you just sent.

10. When you do any of the things on this list, you can use #GreyAllMay on Twitter to let people see your activity for brain cancer advocacy.

We’ve made the snowball, now let’s push it down the hill!

Letting Go

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I’ve put off writing this all day because somehow committing the words to page makes it more real. Late last night, our darling young man was called home to Jesus.

In the last few days, David had been less and less with us, slowly withdrawing into the world beyond this one. I thought he would just drift away from us without a real goodbye, and I was trying to come to grips with that. I should have known that David wouldn’t go out “quietly”.

Yesterday morning, after a few days of little, if any response, David started communicating with us again. He couldn’t really talk, but he could make sounds, and because his personality was always larger than life, we could easily identify a lot of what he was trying to tell us. He had a moment with each of his visitors yesterday, which included my parents, Austin, and his step sister.

His final moments were spent in the company of all four of his parents, surrounded by words of love. We had Celtic Women playing softly in the background in an effort to make him happy and relaxed.

There’s a lot I’d still like to share with the world about David. His earthly life may be over but his message still needs to be told. I’m afraid I’m a little too upset right now to be able to even attempt to do him justice, so I’m not going to try.

There have been many sweet notes posted on Facebook today, including one from Austin that spoke to their sweet relationship. I ask that prayers continue for her and his step siblings as they grapple with the loss of their brother. We know he is in a better place, but it is so sad to be the ones left behind.

For those of you who would like the details, the viewing will be Monday, May 14th from 5-8 pm. The funeral service will be outside at 3pm on Tuesday, May 15th at Laurel Hill Funeral Home.

In lieu of flowers, memorial donations can be made to:
Accelerate Brain Cancer Cure

Please note that it is in memory of David Pearson. It is Brain Cancer Awareness Month, and I think there is no better way to get the word out than by celebrating the life of David.