An Open Letter To Hoda Kotb: Thank You.

Dear Hoda,

(Let’s assume that she will probably never see this, because I am almost certain that she won’t…but if she does…)

When I was pregnant with my first daughter, I watched you and Kathie Lee religiously throughout the entire nine months.  I always enjoyed the fourth hour of the Today Show.  I also caught a lot of grief for having the time to set aside each day to watch it.  I didn’t care though, because I would have done anything to have had a glass of wine and kick my feet up at that point, and watching you two funny girls sip away and chat on TV was deliciously hilarious and heartwarming.  It was also as close as I was going to get to wine for a long time…

Fast forward to today where I now have two (toddler) daughters, a 9 year old step son (which I had back then as well) and a growing home business.  All of which means I never watch the fourth hour on the Today Show…I don’t even get to watch the first.  But I do follow you on Twitter and Facebook. Yesterday while scrolling through my Facebook account, I came across the Today Parents page sharing your story about Project Truly Brave, where you teamed up with Cyndi Lauper and Sara Bareilles to create an anthem for kids fighting cancer in the hopes of raising funds for pediatric cancer research. I was leaving my dentist office, but I sat in my car and cried my eyes out as I watched the video.   Today I saw the beautiful completed music video of “Truly Brave”, and I ran my tear ducts dry.  Because I have been there.

You see that daughter of mine, that I spoke of in the first paragraph, entered this world in August 2011 with a surprise for my husband and me.  She was born with Down syndrome.  Her name is Tessa–we call her Tessa Bug–and she is my warrior. Her surprises didn’t stop there. Two months after her second birthday she was also diagnosed with Acute Megakaryoblastic Leukemia, a form of AML.

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We knew she would have leukemia eventually.  For roughly eight months, she endured numerous blood draws and bone marrow biopsies.  Tessa was initially diagnosed with MDS (Myelodysplastic Syndrome).  Our doctors laid out many scenarios that would/could take place in the months to come.  In October of last year she transitioned rapidly to AML.  Nothing could prepare us to receive that news…not even knowing for months that she would eventually have cancer.

Tessa fought an extremely heroic fight.  There certainly were times when I feared and even planned for the worst.  On Tessa’s last day of chemotherapy, we celebrated gleefully in her hospital room.  Her nurses made signs, and I kissed her over a thousand times that day.  I promised her she would never have to do any of it again and that life was starting over.  That same day we learned that her latest biopsy indicated a small population of cancer cells had resisted treatment and that the road ahead was very unclear.

We completed treatment in April and started life over at home as a family.  In the two months that followed, she had two more bone marrow biopsies to see what those cells were doing.  The first one showed a slight decrease in size.  The following month showed that it had gone back up.  We waited two months to do another to give her body a much needed rest.  Finally in late July her biopsy indicated that she was finally in remission.  Her doctors were stunned and we were, too!

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What I learned most throughout my daughter’s treatment is that hope is the most real thing that I have ever experienced.  We had more than one reason to give up hope, yet it was the one thing that kept us going–hope.  Hope exists despite all else that says otherwise. We are all entitled to it, and not one person or nothing can take it away. And you, Hoda, are giving the gift of hope to families like mine…to children who deserve barrels full of it.  You have redefined to thousands what it truly means to be brave.

Here you are, a woman who had every reason to do something similar for breast cancer awareness (and maybe you have or will)–especially on the heals on breast cancer awareness month–yet graciously decided to use your incredible voice to stand up for children fighting cancer everywhere. I can’t help but feel humbled by your nobility. Thank you.  No really, thank you!  Because what our kids need is a voice louder than their own and someone like you on their side.  They need hope.  As a mother to a child who has had cancer, I cannot fully express my gratitude for Project Truly Brave. These kids are truly and incredibly brave.  I know that you have definitely witnessed that in your experiences with pediatric cancer patients.

To those two iconic musicians that you hand-picked to carry out your message, Sara Bareilles and Cyndi Lauper–THANK YOU, TOO!  You are right–there is something about a good song that makes me believe that anything is possible.  We listened to Sara’s (like I am on a first-name basis) song “Brave” a million times over during Tessa’s treatment.  If I couldn’t take cancer down myself for my girl, I was certainly going to stand up strong to it! That is exactly how I felt when I heard that song.  Therefore, I totally get where you are coming from with music.

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All I really wanted to tell you was thanks, and maybe to give you a huge virtual hug.  Thank you for your beautiful crafted anthem that reminds me of a difficult and yet somehow strangely beautiful time in our lives. Thank you for honoring the strength and courage in children fighting battles twice the size of themselves.  I can hear “Truly Brave” now ringing through the halls of children’s hospitals where moms and dads and little warriors find themselves planted in battle with their new fight song pumping them full of courage…and hope.

Most of all, thank you for opening a spot in your heart and for caring so deeply.

Sincerely,

Becky Carey (and Tessa Bug, too)

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***Donate to Hoda’s amazing effort on Crowdrise!***

The Business About Awareness

3.8%

That is the total amount of federal funding for all kids cancers.  And no, that is not per child.  Just think about that for a bit. 

3.8%…

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Segue…

I hear you now.  Another pitch begging to raise awareness.  That’s fair.  After all, I am not the only person out there trying to grab your attention for a cause.  Here is my awareness spiel.

People, often friends, ask me how on earth they choose where to donate to and who to support.  These days everyone has something to advocate for.  More and more, medically driven causes seem to be where our funds are needed most.  So if you so choose to donate spare monies, how do you decide where to give it?  What are other ways to help?  Here is what I think is important when it comes to supporting any great cause.

-Find a cause(s) you are passionate about.  It is always easier to give to something you care deeply for.  My heart is primarily rooted in Down syndrome research and finding cures for childhood cancer.  Some people prefer donating to one cause, while I spread it across a few different places.

-Donate regularly. You can donate as often as you would like to a cause, but I prefer donating either every six months or once every year.  Many causes and coalitions have at least one major fundraising event throughout the year.  They also have either one day or an entire month that is dedicated to raising awareness, and primarily funds.  The best way to help your cause get ahead is to donate regularly. 

-Volunteer.  Another great way to donate is by giving your time.  Volunteers are a huge part of what makes an organization successful when you consider that a vast majority of them are ran by volunteered time.  Whether you have an hour to spare or extra time each month or if you can help at an annual event, know that that time spent helping will be greatly appreciated.

-Educate.  If you are unable to donate time or money, at least educate yourself on a cause you may be curious and stand for it.  Causes do not just need funding, they need voices.  Learning about a cause or organization as well as understanding why they do what they do is important for you and for your cause.  Use your voice to carry out their message.  If you care for the cause, tell someone why!

Most importantly, be respectful.  During the great ALS Ice Bucket Challenge just a few weeks ago, it broke my heart to see people who were so annoyed that people were dumping water on their heads, saying things like “Stop dumping water on your head already and just give your money…” and remarking how “stupid” it all was.  I mean seriously, anyone who was that annoyed with the videos did not have to watch them.  I’ll tell you something—I am so freaking glad I watched that many people freeze their butts off for a few seconds!  In the process I learned more about ALS, even though I know a few families who have been affected by the disease.  It was ice water and a brief moment of time that helped a ton of people out.  If you don’t like what an organization is doing to benefit themselves, then just pass them by quietly.  And to be perfectly honest, I was a tad bit jealous that they were able to raise so much money!  Can you imagine what that kind of push would have done for childhood cancer or cancer in general?!  Nevertheless, people dumping ice water on their heads a hundred different ways was awesome.  Bottom line, respect what a group is doing even if being respectful means saying “good for them” and moving on—which, by the way, would be totally appropriate.  If it were you or your loved one, you would want people to understand.  More than likely, you would appreciated being supported.

Don’t like supporting a cause?  That is okay.  You don’t have to.  But know that people will continue to raise awareness around you in this world.  I really do believe that supporting any cause or organization is good for our souls.  Supporting a cause in any way gives me something to believe in.  It lets me have a hand in something bigger than myself.

Having said all of that, I am using my voice to tell you that September is Childhood Cancer Awareness Month.  Cancer sucks, right?  I mean really, who out there actually is like “Yay for cancer!”  No one, that’s who.  Cancer is especially horrible for kids and babies.  Never in a million years did I think I would be a cancer mom and the day before Tessa was diagnosed, I wasn’t.  But I am now, and it is my job to tell you why our kids deserve more than 3.8% of federal funding. 

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View the entire list of childhood cancer facts on The Truth 365 website or any of the sights listed below.  Everyday 46 kids are diagnosed with cancer.  That’s way too many.  Every day, 7 children die from a form of the disease.  That’s too many as well…even 1 would be too many. Cancer is the leading cause of death (by disease) in kids in the United States.  There has to be more than can be done.  For now we can’t guarantee a cure, but we can guarantee hope for children and their families by teaming up against cancer!

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Without awareness, we don’t have money.  Without money, we can’t help our kids.  Wear your gold or whip a cream pie in your face (that’s right, pie in the face challenge)!  Learn the disturbing facts about kids with cancer during and after treatment.  Donate any way that you can.  Those spare pennies really do add up when you think about what it takes to help a child fight cancer, even outside of treatment.  Our future is worth more than 3.8%.  Check out the links I have posted here.  We need way more than awareness to keep our kids alive; we need cures! 

Badger Childhood Cancer Network 

Alex’s Lemonade Stand 

Kids V Cancer

St. Baldricks

Cure Childhood Cancer