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

Dear Kendal…

Dear Kendal,

Well this is interesting…a letter to my youngest.  We have some catching up to do girlfriend…

One year ago within minutes of writing this, I learned that I would finally go to the hospital to deliver you.  I remember wishing away the end of what felt like your long stay in my overgrown and over-stretched belly.

37 weeks

You wouldn’t come easily.  We learned you were in a deep transverse arrest (face presenting), and we were told it was too dangerous to naturally deliver you.  I was being prepped for an c-section.  Alright I will be honest, when they first told me I was going to need a c-section, after a pause, the first thing I said was “Okay, alright…well at least I don’t have to push…”  And then there were about five blank stares from those in the room who assumed I was not taking it seriously.  I was but I am sorry, the doctor broke my water a while before that and I was in full blown labor immediately.  I already knew what labor was like, and I could not get it together…ridiculous, I know. Nevertheless, you made your stubborn entrance into this crazy world as perfectly as you intended…foreshadowing what life with you would be like.

kendal 3 days

I would have kept you small that small for a million years.  You were a dream baby.  You were also busy from the moment you arrived wiggling and moving and waving your arms nonstop.  Sleep slowed you periodically, but as you grew we realized that our hands (and hearts) would be more full.

One week after your six month birthday, your sister was admitted to the hospital for leukemia.  I feared that day for more reasons than the completely obvious.  I had a little baby at home who needed me. I had a baby at home who I needed, too.  I had to accept that I would miss a large handful of your firsts and that I would not be there each day.  I would miss you grow.  I would miss rocking you to sleep.  I would miss a small part in directly raising you for the next six months.  And it killed me.  It still does when I think about the time that I missed with you…the time that I can never ever have back with my baby.

In that time, when your days were rough I would skype you at daycare, talk to you on the phone at night with daddy, and sneak away for one or two nights just to be able to see your sweet face.  I know that you will have no memory of that time and for that I am thankful, but please know that a day did not go by where I did not miss you or think of you when I was away getting Tessa better.   I remember so vividly having to decide what baby needed me more each day, and I hope my heart never endures that feeling again.  Even though I cannot replace those long days and nights, I will make up for it in the days and years to come.

You are such a brilliant and sweet little lady.  You crawled at 5.5 months, walked at 9.5.  You climb on everything and dance every single time you hear music.  You have been talking and teething your way into your toddler years.  Most days we say how crazy you are, but really we know how amazing you are.  Your spirit is wild and free.  You are driven and stubborn like your dad (okay and maybe mom as well), and sweet like your sister and brother.  Being your mom is awesome.

credit:  Judi Carey

credit: Judi Carey (Little Britches Photography)

I love watching you grow.  Happy 1st birthday baby girl!

credit:  Judi Carey (Little Britches Photography)

credit: Judi Carey (Little Britches Photography)

Love, Mom