Like Sands Through The Hourglass, So Are The Hairs On The Pillow

Last Week's Blog > "She Has What?!?! This Can't Be Happening."

After much discussion and my brother-in-law, Mike the doctor, thoroughly reviewing the material, we decided to participate in the clinical trial. For us, it made the most sense. The choice caused us to transfer hospitals. Atia was defined as "Standard Risk - Low" and that was important because it determined her treatment plan.

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We were lucky because Atia had been selected to receive extra dosages of the drug being tested. We were informed that she would be receiving chemo for over two years straight.

July 10th, 2011 is her final treatment date.

We quickly learned that cancer in children and adolescents is rare. According to  CureSearch,

ALL is the most common pediatric cancer, accounting for 35% of all cancers in children. There are about 7,000 new cases in children and adolescents (birth to 21 years of age) in the United States each year.

And the National Cancer Institute states,

The improvement in survival for children with ALL over the past 35 years is one of the great success stories of cancer treatment. In the 1960s, less than 5 percent of children with ALL survived for more than five years. Today, about 85 percent of children with ALL live five years or more.

We were somewhat encouraged by these statistics, but they didn't minimize our overall concern. You never REALLY know if your child is one of the 85 percent that will survive or the 15 percent that won't. And remember, of the 85 percent that survive, some only live for five years.

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Atia began the first of six phases of chemo treatment on April 20th, 2009. She was given anesthesia while doctors performed a spinal tap and injected the first doses of three different chemos (an injection into the spine, a push through her picc line and an oral pill).

This treatment made Atia violently ill. She threw up all over Steve several times that day and couldn't stop crying. She was in excruciating pain. She suffered a severe headache from the spinal tap as well.

Her white blood cell count (WBC) was 40,000 that day. Amazingly, the next day her WBCs had reduced by 50 percent. The same thing happened on the next day and the next. Atia was responding remarkably well. Finally, a small victory!

Though the chemo was doing its job well, it was also taking its toll. Atia was incredibly sick during the first phase. She would spontaneously throw up, experience severe mood swings and cry all the time. She was exhausted and in immense overall pain. She was still immobile and losing weight and muscle quickly. As expected, Atia also started losing her hair. Though you know it's going to happen, you're never quite ready (view photo gallery).

When we were finally able to take her home, we were excited and nervous at the same time. We weren't sure that we'd be able to satisfy all of her needs or remember the complicated schedule of medications she required. We were shocked by the level of responsibility placed on the parents.

As stated in my previous entry, we have no medical training, but were forced to quickly master both the names and quantities of drugs that we'd never heard of before such as, Methotrexate, Vincristine, Mercaptopurine, Dexamethasone, Bactrim, Nystatin, etc.

Did you know that 1 cc and 1 ml are the same liquid measurement? We didn't, but do now.

The doctor said, "Remember, she gets this medication twice daily all week long, and then this medication is also twice daily but only on Mondays and Tuesdays. This one can be given either one hour before she eats or two hours after, but never with orange juice." Thank goodness we were provided a calendar that outlined what, when and how much Atia was to receive, but at times I even found that confusing.

Our time home WAS exciting, but for all the wrong reasons. The first day was the toughest and most frightening day we'd experienced since watching Atia go under anesthesia...

 

Next Week's Blog > "Friday, April 24th, 2009: Tough & Terrifying Day!"
 

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  • Thank you for sharing your stories... it's heart wrenching but it gives a different perspective of what people usually see (e.g. neatly packaged someone is sick, then they aren't). Atia is a tough little lady and she's lucky to have such strong parents!

  • Laura, I remember observing as the doctors went over the meds and schedule with you. It was completely baffling. I started wondering about all parents in your shoes, those that may not be as intelligent, educated, organized or logical as you two, and even more scary, those that may not speak the language, have the ability to stay at home with their sick child or may not carry health insurance. It was truly heart-breaking to think of the challenges those families might face, but even more frightening, how the survival rate of their children might be affected by those challenges.

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