She Has What?!?! This Can't Be Happening.

Last Week's Blog > "The ER. I Wish It Was Just a Great Show" 

To say that Atia's blood results weren't good is an understatement. We were told that the CBC test (complete blood count) showed Atia having a 43,000 white blood cell count. This information meant absolutely nothing to us, because we have no medical training whatsoever. I think the doctor could tell by our blank stares and lack of response that we didn't understand. She went on to explain that "healthy" children have between a 5,000 and 10,000 white blood cell count.

This statistic caught out attention, but honestly we still didn't see what she was getting at. I remember saying, "What does that mean?" She looked at me with the most compassionate eyes and said, "Well, it means that Atia could have Leukemia, but we're not sure. We'll have to run several additional tests."

I couldn't believe what I was hearing. I was paralyzed with fear. Somehow I summoned up the courage to say, "Like Cancer? Leukemia is Cancer, right?" Even now, as I'm retelling this story, my body is tensing up and beginning to shake. It was such a devastating revelation that I was unable to comprehend its magnitude at the time.

We were immediately admitted into the hospital. At that point, it was around midnight. We were all exhausted, but too traumatized to sleep.

So many thoughts were swirling through my head: How long will she be in the hospital? How much more pain will she have to endure (getting the blood taken was bad enough)? Will she be the same after this is all over? How sick is she? What exactly IS Leukemia? Could it be something else? Are we going to lose our daughter?

My world stopped. I could hardly breathe. Did I just ask if my daughter was going to die? It's unfathomable. It's unfair. No one should ever be in a position where that is a justifiable question. She was only 17 months old for goodness sake!! How could this be happening?!?

The next morning we were visited by a team of experts. Doctors from both the pediatric oncology group and infectious disease group came. No one was absolutely sure what was causing the spike in Atia's white blood cell count. There was a slight possibility that it could be viral, but they were all leaning towards it being Leukemia. For some reason, I was praying that it was viral. In my mind, if it was then it didn't seem as bad.

Thumbnail image for Sleeping At Rush.jpg

If you've ever needed to test your commitment and absolutely love for your child, all you have to do is standby helplessly while nurses continuously poke and prod your child in an effort to place an IV. Baby's veins are tiny and difficult to access; I get that. But, watching Atia thrash her body around, scream, cry and desperately call out, "Mommy help! Mommy, please." while nurses are telling me to stand back so they can get the needle in is the most agonizing experience - a moment of complete despair and heartbreak.

I felt as though I had broken my unspoken promise to always protect her. How could I sit there and watch as the nurses continued to "hurt" her over and over and over again? It was an unbearable experience.

I know that the ends justified the means and that it had to be done in order for Atia to receive the treatment she so desperately needed, but at the time I couldn't think clearly. I was overcome with emotion and it was much stronger than logical reasoning.

We made a million phone calls to family and friends. My mom left an out-of-state conference and immediately flew into Chicago. I was so grateful. I needed her so badly. I was weak and frightened. I drew from her strength, clarity of thought, love and support. So many others reached out to us immediately with their sympathetic words, prayers and encouragement. My sister-in-law, Sonia, proved to be a pillar of support. She did so much for us.

Thumbnail image for Still Under Sedation At Rush After 1st Bone Marrow Biopsy.jpg

On April 16, 2009, Atia was scheduled to have a bone marrow biopsy and a picc line placed. The biopsy was the only definitive way to prove whether this was or wasn't Leukemia. Atia was placed under anesthesia for the procedures.

The surgeon allowed me to go into the operating room with her and hold her hand until the anesthesia kicked in. She was terrified. It was cold; there were lots of strange noises, bright lights and she was surrounded by masked strangers.

I tried to stay strong for her. I didn't want her to be more frightened because she saw me crying. When she was asleep, I leaned over her nearly naked body and gave her lifeless face several kisses. I held her, hugged her and told her that I loved her.

photo.jpg

Then, I walked out of the room with my head hung low and began sobbing uncontrollably. It evolved into an ugly angry cry. I was so mad. Why was this happening? Hadn't we been through enough? What more did we have to prove? As quickly as the anger came, it passed and a wave of terror overcame me. Please God, oh please, let my baby make it through this procedure. I cried some more thinking: What if she doesn't come out of this surgery? What if I never see her again?

The next day the results were in. It was Acute Lymphoblastic Leukemia (ALL). Her bone marrow was 98% full of these rogue white blood cells. We had to make some critical decisions immediately.

Did we want to stay at our current hospital or go to another? Did we want standard treatment or to enroll in a clinical trial?...

IMG_5111.jpg

 
Next Week's Blog > "Like Sands Through The Hourglass, So Are The Hairs On the Pillow" 

Comments

Leave a comment
  • Oh Laura. I know your story and I followed your experience but hearing it all in one story....I just don't have the words. You are an amazing and incredibly strong Mother and thank you for sharing.

  • My heart is with you. I can't wait to hear more, you made me cry this morning.

  • Laura, you are incredible for sharing your story. Thank you. This blog is featured on today's "Hot on ChicagoNow:"
    http://www.chicagonow.com/blogs/hot-on-chicagonow/2010/01/hot-on-chicagonow-january-26-2010.html

  • Stay strong trust me. My sister was diagnosed with Leukemia in 1999. She had been sick for three months prior to us getting the news. I can truly relate to your experience. Me being her older brother it was hard to be strong. Seeing my sister lose her hair, weight, and all these procedures that don't seem work. She was only twelve years old at the time. I remember when my mom called me to tell me she had Leukemia. I was at work at the time, and when I heard tears flowed like a river. Doctor's said she wouldn't make it. She was even granted a wish from the "Make a Wish Foundation". Cause they believed she wouldn't make it. I can assure you God answers prayers, its just done on his clock. My sister just graduated from college, a mother of two, and the manager at her job. She'll be 23(MJ) this year. She made it and your beautiful daughter will too. Stay strong.

  • Thanks to all of you for your kind words. It's amazing how life experiences can connect strangers and make friendships stronger.

    Wealthydad, I'm moved by your story and delighted by its outcome. Congratulations to you and your family. Please be sure to give your sister a big hug on my behalf. Tell her that I think she's an inspiration and true hero (your mom is too). It's my hope that Atia will have the same chance - by all accounts, she's on track for a full recovery.

    Thank you, Lauren, for posting my blog on "Hot on ChicagoNow". I'm thrilled to have caught your attention.

    Please check in next Tuesday as the story continues to unfold...

  • In reply to llutarewych:

    My sister was diagnosed with AML in 1994, and passed away 7 months later (she was 27). Keep the faith! A.L.L. is VERY curable, especially in children diagnosed before 5 years old. I now work for the Leukemia Research Foundation in Wilmette, raising funds for research to find a cure! I wanted to let you know about our Town Hall Meeting this Sunday @ Northwestern Memorial Hospital. Dr. Venugopal from Rush and Dr. Kletzel from Children's (among others) will be there to answer questions about treatments, etc. Go to our website for details www.leukemia-research.org. Good luck to you and your daughter...and let us know if we can help!

  • In reply to llutarewych:

    My pleasure. When theres proof its hope, and prayers are answered that can be encouraging. And if my family and I saw light at the end of the tunnel you and Atia can too. Stay in faith and most importantly stay strong for Atia. God bless you both.

  • Oh, my heart. Can you pray for someone retro-actively? Because I am!

  • Kelley - keep praying because she still has a long road ahead of her. She'll be getting chemo every day through July 2011.

  • Laura, I know your story, too, but really was moved to tears as you described, in detail, the moments when you found out, and the emotions you went through right before Atia underwent her surgery. Wow! Thanks for sharing. Your experience has been definitely (as my father-in-law would put it) a gut-wrenching nightmare.

  • Laura - you are an amazingly strong mom! I can't even find the words to post a "decent/intelligent" comment because my heart feels so tight right now. Thank you for sharing your story. I will keep you and Atia in my prayers.

Leave a comment