Friday, May 13, 2011

Our Story

We arrived at Seattle’s Children’s Hospital with red veins running through the whites of our eyes weary from a sleepless night. We walked the long and winding hallways with trepidation gripping our children as if someone would be there waiting to take them away.

Alexandra spent a good part of the morning in surgery where doctors implanted a port-a-cath beneath her skin just slightly below her right shoulder. This device would allow doctors to draw blood and also inject chemotherapy drugs into her small, almost brand new body – Alex was 18-months old.

While Alex was in surgery, we waited impatiently pacing the oddly shaped waiting room located in the cancer clinic. My husband, as I recall, seemed much calmer though I’m quite certain he was just as distraught as I. I was dismayed by my surroundings. There were comfortable chairs, a TV, DVD player, video games, books, magazines and board games – all the comforts of home and yet this wasn’t home, which begged the question, “How long did these people think we would be here?” We watched the nurses and doctors through the window that separated the waiting room from the patient area. Doctors wore silly ties with cartoons characters like Daffy Duck and nurses wore uniforms with Dora the Explorer and Sponge Bob. While my husband didn’t seem to mind I was clearly annoyed with their silliness -- this was no place for video games or Bugs Bunny uniforms. I wanted to shout as loudly as possible, “This is the cancer unit! Why are you acting like we’re at Disneyland?” I wanted nothing more than to wrap my child in my arms and take her home. I wanted to feed her chicken soup, take her temperature, place a cool compress on her head and do all the things mothers are supposed to do when their child is sick. Chemotherapy seemed drastic and a little much for a baby girl who seemed on the surface healthy.

After a lengthy wait, Alex appeared, rolled-in on a hospital bed. She looked exhausted and confused by her surroundings. After gentle hugs and tender smiles, the nurse showed us to our room.

The room was directly opposite from the waiting room and at first glance appeared large and not completely unpleasant. Upon stepping inside, I heard voices coming from the other side of a pale blue curtain – it was another patient – a little girl not more than twelve years old. She was absent of color to the point of translucent, frail, bald and sadder than you can ever begin to imagine. Her name, Hannah.

I turned haughtily toward the nurse in disbelief. She couldn’t possibly have thought that we would be okay with sharing a room with another patient. I looked at my baby and thought seriously about why they thought my child was like that little girl. Alex was nothing like Hannah. They must have gotten it wrong. After the nurse assured me that this was indeed going to be our home for the next few days I reluctantly carried our bags in and set them down. I couldn’t sit down. Sitting would only make this nightmare seem permanent and I wanted the satisfaction of knowing that I was in control of whether or not we would stay. I’d sit when I was good and ready.  At the far end of the room stood a large cage like structure which soon I discovered was the hospital’s version of a crib. The rails were much higher and the enormity of it was comical.  I stood on tip toes and clumsily lifted Alex up, and then over the tall rails; Alex looked puny sitting there behind bars.

Throughout the day doctors and nurses took turns drawing blood and overall inspecting Alex’s vitals. In the midst of all this, Hannah’s mother came and stood beside me gearing up to introduce herself. She was soft spoken, and had curly red hair. I forced myself to look at her though in all honesty, I had no interest in knowing her. She explained to me that Hannah had brain cancer and in exchange, I told her about Alex’s eye cancer. She seemed to understand our plight and eventually I welcomed her smile. Then, as if I were smacked in the head with a bowling ball, she told me that Hannah started chemotherapy and radiation treatment in late November, and there we stood – it was January 2nd 

I freaked out. I walked away from her and never looked back. I was rude, and wanted nothing more to do with Hannah or her mother. I couldn’t comprehend that Hannah, only a month ago looked like a regular child and my mind was suddenly shaken. I looked at Alex, tiny in her gigantic crib and tried to picture her bald, colorless, and skeletal – I couldn’t imagine it. I wouldn’t imagine it. I was unprepared both emotionally and mentally for this journey.

Day quickly turned to night and just like at home, Alex did not want to sleep in the crib. I scooped her up and held her close to me as we both tried to get comfortable on the narrow cot. Once we were finally situated, Alex went to sleep. I lay there with my eyes open. In the quiet of the night I heard the shuffling of feet just a little beyond the pale blue curtain. I turned over slowly and then pulled back the curtain, careful not to wake Alex, and what I saw sent chills down my spine. There was Hannah, frail and shivering trying to make her way to the bathroom that was conveniently located in the room, but somehow very inconveniently placed for her. 

Hannah moved without lifting her feet. The sound I was hearing was her slippers sliding painstakingly across the linoleum floor. With each subtle movement, Hannah winced and moaned telling me that she was in excruciating pain. I let go of the curtain and lay on my back looking straight up at the tiny holes in the ceiling tiles. The panic I felt was palpable; my breathing quickened and I felt a little warm as if I were running a slight fever. I didn’t want to see or hear Hannah any longer. The voice in my head was screaming, “Shut up, Hannah! Go back to bed, Hannah!” The pale blue curtain did nothing to mute the sliding and moaning sounds and the more I heard them, the more they seemed to echo in my mind. I stuffed the blanket over my left ear and rolled over on my right side. I couldn’t listen to Hannah any longer. 
{January 2, 2008}

By morning the floor was bustling with visitors and more doctors. Alex was anxious to leave the room to explore the rest of the floor, so like Hannah; we unplugged the IV and took it with us walking carefully so as not to disrupt the tubes flowing loosely from the IV to Alex. After a night’s sleep, I felt less angry and slightly more accepting of the position we were in. I met other parents with a friendly hello as we walked passed and smiled at many other bald children, some with incisions in their heads that went from the base of their neck to the top of their forehead. Some children had tubes coming out of their noses and yet they were running and playing as if they were on a play date. Alex still with a head of floppy curls found her way to the toys and happily played not noticing the other sick children present or maybe she noticed but didn’t understand that they were sick. 

By the time we returned to our room, Hannah’s bed was empty. The nurses had already been in to tidy up; bed sheets were tucked taught underneath the mattress, the pillow had been fluffed and pillowcase swapped out for a fresh one. No doubt they’d probably done a good amount of sanitizing too in preparation for the next little girl or boy who would eventually come to claim the space. And unfortunately, these beds never stay empty for long. Hannah had apparently checked out and went home or moved to another care facility… I really don’t know. I felt horrible. I looked up and then focused my attention on each corner of the room checking to see if there were cameras and wondering if anyone had captured record of my bad behavior. If this were a humanities test, I failed miserably. I I had shown zero compassion for this family and worse yet, I tried with all my might to shun this little girl grasping desperately to isolate myself from the misery of cancer.  My only defense, meager as it may have been, is that I felt I was unfairly forced into this terrifying situation and was unable to cope with the reality of where our lives were going -- it caused me to briefly abandon all semblances of manners. In that moment, standing there in that empty room, I knew I would always remember Hannah and her mother. I’d never forget how rude and closed minded I was and then suddenly it dawned on me that I would soon be just like Hannah’s mother - a mother of a colorless, frail and possibly bald little girl. Would anyone have compassion for us?

{April 2008}

{March 14, 2008, day of Alex's eye surgery}

{shortly after eye surgery}

2008


2009


2010


It is now May 13, 2011 and tomorrow will be Alex’s third year living without cancer. And even though cancer claimed Alex’s left eye it did not strip her of her spirit and infectious sense of humor. Alex remains cancer free and on May 2nd, she celebrated her fifth birthday. She may be small but she’s a fighter. Here are images of Alex as of a few days ago.

I wish I could give you an update on how Hannah is doing, but I don’t know what has happened to her. I only hope that she too is thriving, attending school, listening to music, has a crush on a boy and he has a crush on her. I hope she’s playing soccer or softball or possibly taking Kung Fu or taking a foreign language. I hope she’s a Girl Scout. I hope she’s giving her parents hell and that they’re looking at her and thinking, “typical teenager.” I hope she’s studying for exams and working on a science project. I hope she is soft spoken and has red curly hair just like her mother. I hope she has had several birthdays and that she and her mother are making plans for the next one.

Once again my husband is in training for the Seattle Rock & Roll Marathon. He hopes to raise money for the American Cancer Society. The America Cancer Society saves lives and creates more birthdays by helping people stay well, and finding cures. If you are at all motivated to donate a few dollars to my husband’s run, please click on the link just below the banner of this blog. Your dollars really do make a difference – it’s made a difference for Alex and possibly Hannah, and for many others battling this disease.   

To read more about Alex, please click {here}, {here} and {here}.

4 comments:

  1. Amazing, Maya. I had no idea. Thank you for sharing all of this with us. Beautiful. Bless little Alex . . . your whole family too! :)

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  2. I'm so glad you posted this now. I'm sending today's post to my friend whose six year old is being treated for sinonasal teratocarcinosarcoma. There is good news mixed with bad in his story, which I follow daily on Caring Bridge. He too is an amazing hero!

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  3. Alex you are my super heroine!

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  4. Maya this is Alex, dad to Owain (http://owainsarmy.org). We've been there. We've been the family horrified and disbelieving, and I think we've been on the scaring end too with some pretty bad hospital stays. Thanks for your beautiful post. Please drop me a line at alex@crushkidscancer.org - would love to chat.

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