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.

tessa relay 3

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!

Tessa mom

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.

last chemo

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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!***

Carry On, Carry On

I often refer to Tessa’s course of cancer treatment and life with Down syndrome as a roller coaster ride, a journey or a long road; each a symbolic description of what she endures and we endure together.  With each hurdle jumped comes celebration and with each set back comes the opportunity to rise above the challenges that unfold.  Through all of it lays hope that carries us through each passing day, unsure of what the next will bring.  That is the funny, yet painfully frustrating, large factor of life.  The unknown.  How do we accept it? How do we prepare for it?  How do we know?

My biggest lesson in this life is battling the unknown, accepting what I cannot control and finding a way to trust that everything will be okay…whatever that is.  But I suck at it.  I want to know.  I need to know that everything will be fine.  I need to know that the heartache I feel is not intended to bring me down, but rather lift me up in indescribable ways.

Fear is a powerful feeling.  If we cannot control it, it will consume us.  If we cannot accept it, it will always remain.  But at the end of the day, fear is just a feeling.  It is not a beast.  It is not a disease. Though it may be powerful, I am bigger than fear because for all that I have given to fear it has given me nothing in return.  That much I know for sure.

Our search for clarity fell short the day of Kendal’s first birthday when I received a call with Tessa’s biopsy results.  We learned that Tessa’s doctors believe that she has refractory AML.  The Leukemia & Lymphoma Society describes refractory AML as this:

“Most patients achieve a remission (an absence of signs and symptoms) after initial treatment for acute myeloid leukemia (AML). In some patients, however, the leukemia cells resist treatment. This is referred to as refractory leukemia.” 

The leukemia cells mentioned in the above phrased article would be the same cells I spoke about in my Road Bumps post back in March. The day we celebrated Tessa’s last day of IV chemo was the same day we learned that the stretch to the finish line would be longer than we had hoped.  Now we know a little more.  Tessa is in morphological remission which means that overall her body responded to treatment well and she has less than five percent blast cells in her bone marrow.  However, the small population of cells that started at .5, then dropped to .2 rose to 1.0 as indicated in her latest biopsy.  We were positive that the number would have continued to drop, but unfortunately it didn’t happen.  These cells are characteristically the same as the AML she had, but for whatever reason this population resisted treatment.  She cannot have the same chemo that was used the first time around.  Her doctors are consulting with specialists and experts again to determine if we can treat her with different medicines not used on her before or if she will eventually need a bone marrow transplant. For now we wait, because no one–not even the experts–can predict what this population of cells will do or when.  It could be weeks or months. She is still scheduled to finish out her last two spinal taps, and we will wait to see what next week’s biopsy says.  Who knows…maybe these numbers will bounce around for while.  Waiting…exactly what we were hoping to move on from.

That is Tessa for you.  Nothing ordinary about this girl and, like usual, she is keeping us on the edge of our seats.  Let’s be real, they aren’t comfy seats either.  The helplessness has since set back in. For the second time in her life, we have to wait for cancer’s invasion.  To be more specific, that would be twice in one year.  And there is nothing that I can do to stop it.

I told my sister a while ago that I had an intense gut feeling that treating Tessa would painfully take more than one time.  I still have a lingering gut feeling that things will be extremely rough.  Moms know.  And at this point I stand as firmly in my faith as I ever did, but hearing from numerous people about “God’s plans” for my child and about how “He only gives the heaviest battles to those with the strongest shoulders” is just not enough right now.  It does not aid in our pain.  It does not mend the brokenness.  It hurts.  Phrases like this make me want to curse out religion, not rejoice. Because right now, no one can tell me that any universal plan is greater than our hurt.  Each and every night I ask for her to be healed, and I wholeheartedly trust that she will always be okay no matter what may happen. Therefore, I don’t need assurance that He is with us because I do believe it.  I also do not need to be reminded in every conversation that I have regarding Tessa.  What we really and truthfully need is a safety net to catch us when we feel like we are falling. We need open arms and ears and understanding hearts. This is as real as it gets. Sometimes cancer is just not going to go down without a full-blown war.

Today and each day she is brightly spirited and feeling great.  That is what makes this news exceptionally difficult.  I am thankful for her otherwise healthy self and her beautiful smile that lights up our whole house.  Although we are not at peace with these circumstances, we are not backing down.  We will carry on her fight.  Her day is coming.

If anyone knows the way to a miracle, we would gladly take directions.

Tessa ball pit