Make A Child Smile

Zayla's Story
written by mom Chris

Zayla was born on June 6th, 2001, via c-section almost 3 weeks early. She weighed 9 lbs. 8 ½ oz, I was gestational diabetic, that is why she was so large. When I was pregnant with Zayla her first ultrasound had the doctors worried, they sent us to University of Chicago to have an amniocentesis done in January of 2001. We would find out in February that she was a perfectly healthy little girl. Many people have commented on her name, she was named after my husband’s deceased great aunt. I would later learn that her name means resistant, how wrong could that be?

Zayla was a very active toddler, with two older sisters who adore her. On January 3rd, 2005 Zayla had started complaining that her leg hurt. She also seemed to be battling a pretty nasty cold, and spiked a pretty high fever for days. Her doctor prescribed an antibiotic for her, but after several days of using it and no improvement I rescheduled for her to be seen. At that time her doctor didn’t know what was wrong, so ordered a couple of blood tests. I will never forget that day, when the doctor called and said, I need you to come in to the office right away.

When I arrived, her doctor didn’t waste any time in telling me what he thought was wrong. He told me, you need to go home, pack a suitcase, and then go to our local hospital, “your daughter has Leukemia”. It wasn’t, "I think" she has Leukemia; it was she HAS Leukemia. He then informed me that we would be transported to Chicago where there are specialists who could better manage this disease. On Wednesday, January 12th, 2005 my husband and I followed an ambulance carrying our youngest daughter to University of Chicago Children’s Hospital. That’s right, the same hospital that I had been at 4 years prior, worrying about my unborn child. I knew we were in good hands though.

By that weekend, Zayla would have surgery to have a port-a-catheter placed, a bone marrow aspiration, and a lumbar puncture or spinal tap.
She would also start hard chemotherapy to try and quickly rid her body of the leukemic cells, the quicker the better! After 10 days of being in the hospital, we were finally able to go home! We would only stay home for 5 days before Zayla took a terrible turn for the worse. On January 27th, 2005, Zayla was readmitted to the hospital with a high fever, she had a bad infection in her port. There were several times in that next week that we almost lost her, she ended up staying in ICU for 3 weeks - 2 weeks completely sedated. They removed her port, and then had to go back in and remove her upper pectoralis major muscle, skin and fatty tissue to get rid of the necrotizing Pseudomonas that was ravishing her little body. On February 24th, we were finally sent home with a Wound Vac in place, to try and help clean her wound before they would do a skin graft to close the hole in her chest wall. On March 14th, 2005 Zayla was readmitted for her scheduled skin graft. All was once again well.

There were many more ER visits, but no hospital stays through a good majority of her treatment. You could almost say that we "coasted" through the majority, and we had our major "bump" at the beginning - how wrong was I to think that!!!

On June 6th, 2006, Zayla’s 5th birthday, I found out that I was pregnant.
In July we would discover that there were two - TWINS!! I progressed with the pregnancy with really no significant problems, besides a lot of morning sickness.

At my regular OB appointment in October, I was measuring extremely big, and I felt miserable. Three days later, on October 11th I went into pre-term labor, it was too early, I was only 23 weeks and 5 days pregnant. The twins were sharing a placenta and had a condition called Twin to Twin Transfusion. On October 12th, 2006 I delivered 2 perfect little identical twin girls, at once again, University of Chicago Hospital.

Jacqueline Marie was born still, and weighed 1lb 2 oz. Her twin, Josephine Rae weighed 1lb 1oz and lived only a few hours in my arms. The one thing that I am glad we were able to do was save Josephine’s cord blood. It was a "just in case" thing- little did I know that less than two months later Zayla would relapse. We are not going down the cord blood route; it would be a last resort. There is not a day that goes by that I don’t think of my twin angels. I miss them so much!! But now I must focus on getting my daughter Zayla through this cancer journey.

Zayla was scheduled to go off treatment in March 2007, until she relapsed in her central nervous system on December 4th, 2006. We are once again fighting the fight, and are back to square one with chemotherapy. The protocol that she is now on, is much stronger than before, with many more spinal taps and eventual radiation sometime soon. We are currently on week 7 of 104, seems like a lot when you look at it that way.

Zayla is currently in kindergarten, she tries to go at least once a week. She is one amazing and inspiring little girl, and I am truly blessed to say she is my daughter.