One Year

On Saturday, we will celebrate one year from the day Tessa walked out of the hospital after her final round of chemotherapy.  My little baby bird, blowing kisses and making her way through a bubble parade toward sweet freedom.  Bittersweet freedom, that is.  We hauled our things to the car and headed for home, anticipating that final homecoming and the chance to get our lives back after cancer tried to take it all away.  No more dated events in our family history that would be marked in sadness because of leukemia.  It was the end of an era.

Some warned us about life after treatment; preparing me for the unforeseen part of this fight that can come when all is said and done.  But I wrote it off.  Because I thought what we needed most was to be free of treatment and back together at home as a family of five.  The last twelve months of rebuilding our fragile structure, post-treatment, proved harder than I allowed myself to be aware of. At first glance, we were solid.  We took care of our kids, got right back to work, bought a campsite and dreamed about what our future would be.  We traveled to Disney World and sent Tessa to school for the first time.  But things were different; and we had to learn to cope with the tides of leukemia, even though we successfully brought Tessa home with us.  People would comment “how strong we were,” assuming that our lives had slid perfectly back into place. Eventually my confidence in the words of others faded. Instead of saying thank you, I would smile to save what little face I could bare. Just because it was over did not ever mean than it was really over. There were scars, not visible to onlookers, but present to us.  Life moved on without addressing the damage, but knowing full well that it is there.  That was then.

Relax.  What I know now is that all of this was and is normal.  Totally and weirdly normal.  The kind that is okay, but not okay at the same time.  It is a process, much like the various components of our life. We have to navigate every stage, even the most undesirable.  I am grateful for time that has allowed healing over the last year.  We learned how to love in ways that made us reevaluate the past, present and future.  We did it.  All five of us.  We carried Tessa through the unimaginable.

Families who endure life with disease or sickness often face more than the medical struggles the come along with it, often feeling they cannot talk about the various stages of healing that follow such events.  I personally know that I cannot possibly expect to forget the hardships that pushed my family close to the edge, often stretching us as thin as possible. I do not wish to forget it all either. Because I am still learning how to deal; how to grow from each moment that knocked us down.  From each of those times came opportunities to stand. That was the difference between getting by and getting ahead.  And it still is.

It has been a long year.  We have come so far from our extended days and nights spent in the hospital and the cancer lifestyle.  I never experienced raw humility until I had to beg for mercy on my child every single night to heal her…to save her.  That shifted me.  Even now when I am lost or frustrated or confused, I recall the moments that brought me to my knees. When I am joyful or excited, I do the same.

last chemoWe can never fully prepare for the unexpected.  Trust me, I have tried.  I am relieved to have let that part of me go.  (My husband would most definitely agree.)  Replacing fear with hope and finding the silver lining in every situation has been my saving grace.  I cannot wait to see how we change month after month into the following years, using our personal experiences for growth in the future.

It is early in the week, and I am already quite sentimental.  I remember the day the doctor told us that we could take Tess home.  “Are you freaking kidding me,” I cried to her doctor followed by an obscene amount of tears. Dan picked up his phone and before he could even say hello, I screamed that she could go home.  He arrived an hour later with twenty celebratory McNuggets, french fries and ice cream. Because Tessa’s dad knows the way to her heart.

Thank you all for being on this journey with us.  For each and every person near and far…thank you for letting me be honest and real. Most importantly, thank you for letting us feel love and for showing us how to give love back.  On Saturday I will share Tessa’s letter for March.  World Down Syndrome Day and her one year anniversary from hospital freedom. It will be a whopper and I can’t wait!

 

Dear Tessa: The End of the Beginning

Dear Tessa,

Today I feel slightly unsettled.  Yesterday was your third and final spinal tap. 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 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 pumped 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 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