Dear Tessa: The End of the Beginning

Dear Tessa,

Today I feel slightly unsettled.  Yesterday was your third and final spinal tap tomorrow. You had another bone marrow biopsy done to see what those pesky cells that resisted treatment are really doing. If things would have went according to plan, yesterday would have been your last day of treatment.  You would have walked out of the hospital tomorrow as free as the birds that you point to in the sky. Unfortunately we know now that it is not your final treatment. Sure for now it is. But overall it was another day of muscle relaxers and watching a nurse work your arms, hands and feet as they punctured you to place an IV. Another tear filled moment of watching your body melt into the careful hands of doctors after they pump you with anesthetics. Another painful thirty minutes in the waiting area for your daddy and me while you are out.  I am so sorry Tess.  I wish more than anything that we did not have to keep doing this to you. I wish everything was different.  I wish that I could promise that there would be nothing short of normal from here on out, but I just can’t. And it is totally unfair.  But if we take away all of that, just know that you did it.  You made it through a whole course of treatment.  We are so proud of you!

We have only the slightest ideas of what is going to happen from here. All we know for certain is that this hell ride is far from over. When will these cells take off? When will you begin treatment? What on earth does all of this mean?  We did learn yesterday that at some point you will require a bone marrow transplant.  The doctors said we could do more chemo, but they are certain that you would relapse only to need a transplant in the end anyway.  The hell of more rounds of chemo plus a transplant would shatter you.  I know you are strong, but you are also fragile.  I know that is hard to understand, but when I look at you it makes total sense.  Please know that we are always thinking about what is best for you in every conversation we have with a doctor and in every decision we will make now and in the future.  How much is too much?  How much is not enough? I promise that we will do everything we can to get you through this, but I also promise that we will never make you suffer…never. Because I know you better than that.

Your results should be in on Friday, and from there we will meet with the team to discuss the little bit of the future that we are sure of. When we started this chapter in your life over a year ago, the transplant doctor said he would not do a transplant on you at the time fearing that the risks far outweighed the benefits. Now here we are staring at the quite possibly the only opportunity to save you and the thing that could hurt you the most at the same time. Luckily now there are a few new options specific to your situation that we can look into.  Plus the doctors have a better understanding of the characteristics of the leukemia that lives in you.

Your dad and I always knew that you would need a transplant. Though we never talked about it, in our hearts we have always felt it. Obviously we were right.  Despite all of the hope that we had in each round of chemo while thinking you were in total remission, somehow we knew that it would always come down to a transplant. Until then we wait…and wait…and wait some more. We have waited for bad news continuously for over a year, and just once we want to be surprised with good news.  A little bit would do.

A transplant.  Of course I am heartbroken for you…for all of us, and for a million different reasons.  We were so excited for the end of treatment. We were ready to move on.  The end of treatment meant showering you and your brother and sister with extra love, surprises and gifts after the nightmare that has been our lives for the last several months.  We started to prepare our permanent campsite for summer, we looked dogs and puppies to bring home so that one day our pup would be the one bringing smiles to the kids in the hospital. We planned trips and outings for the months ahead.  We dreamed of the future and had the best intentions for the start of life after cancer, but cancer’s plans are trying to steal the show.

Try as it may take your limelight, fine.  But I cannot just sit back and let it rob you of the life that I dream for you.  I cannot control what is going to happen or what “could” happen.  I accepted this and I let go of it as well.  However, I can control a little bit of today. As long as I have today, I can always hope for tomorrow.  There will always be hope because who really knows what tomorrow will bring anyway?  Dad and I always say that this will not stop us from living it up with you while we have you outside of a hospital room.  Just like always, we will live in the moment and celebrate each day for the blessing that it really is.

To honor that my dear, we are headed to look at puppies tonight. Even though the time may not be right, seeing you smile and light up and hearing your giggle will be well worth at least a conversation of a new addition.  For five months you have been saying, “I wannnttt a puppyyyy!”  Though I cannot totally promise one at this moment, I can promise one for the future.  But you never know. Life does not have to stop every time things don’t go according to plan. (Sidenote:  I should really stop making plans.)  My favorite Kelle Hampton quote is the mantra that I remember each day, “I don’t let my fears for tomorrow rob me from the joys of today.”

And when these cells decide to take over, we will be there marching you through another courageous battle until the time when we can bring you back home.  When people tell me how amazed they are by your strength, I wish they could understand just how strong you are. You are a superhero with powers unlike any other.

Tessa Easter

Love, Mom

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