PeekabooNWA

Hannah’s Story

Posted on 30. Aug, 2009 by admin in Personal Stories

This is the story about Hannah. A story about how a tiny 13 1/2-month-old baby girl became such an inspiration to so many people.

July 15, 2008: A year had past, and our baby girl Hannah was turning one. Looking back, Hannah had a good first year of life. She was born a healthy baby on June 15, 2007. She cried her first cry like all babies do, but only after the doctor had to free her neck from the umbilical cord and spank her bottom. Our family was complete. Jackson, our son, was three, and now we had our girl. The perfect family in our eyes. Hannah was right on track with her well child check ups. Nothing seemed to be out of the ordinary.

August 3, 2008: Just a month and a half after her 1st birthday, I noticed Hannah acting differently. She was more needy and fussy than usual. She was cutting her one-year molars, so we assumed that was the source for her discomfort. We treated her with teething tablets and Tylenol, but nothing seemed to relieve her of her pain. That night, I noticed that Hannah could not sit or bear any weight on her legs. I could not put her down without her screaming at the top of her lungs. We knew something was really wrong, and it was not just her teeth. We examined her entire body, but found nothing that could be causing so much pain.

We took Hannah to the doctor for answers, but instead received a run of the mill diagnosis. The doctor said that she was a little dehydrated and had an ear infection. Despite the antibiotic shot, she was still not herself, and nothing I did could console her. The following morning, I took her back to the doctor. I pleaded to the doctor that something was seriously wrong. You can not walk one day and not even use your legs the next. Without much delay, we were sent to Arkansas Children’s Hospital in Little Rock.
Hannah and I traveled the three-and-a-half hour drive to Little Rock in the back of an ambulance. Shortly after we arrived, Jon, my husband, made it to the ER to be with us. I reluctantly gave my baby away to a stranger so that she could be sedated to have her MRI done. I felt so helpless and scared. What was going on with my baby girl?

Four white coats and a handful of nurses walked into the room to give us the results. It was evident something was wrong. Hannah had a 6 cm tumor (about the size of a baseball) shaped like a barbell. It extended from the soft tissue around her kidney into her abdomen, growing from her L1 nerve ending, through her spinal column, then up and down her back from her T10 to her L3 vertebra.

It was clear now why she was so fussy! The tumor had paralyzed her from the waist down. How could a tumor be growing inside of my child and I, her mom, not have any idea? How could I have missed this? A tumor? I worried about what was going to happen to my baby.

August 6, 2008: Just a day after learning of the tumor, Hannah underwent her first surgery. It was to decompress her spine by removing the tumor off of her vertebra, letting her nerves have enough room to function properly. Five days later, we were informed that the tumor was not what the doctors thought it was.

Hannah was scheduled for her second surgery on August 15th to remove the part of the tumor that was up and around her kidney. During this surgery, Hannah also had a central line port pout in her chest under her skin. This port would cut down on the amount of needle sticks Hannah would receive as well as provide a way for her to receive her chemotherapy and other medications.

Finally, two weeks after Hannah was brought to Arkansas Children’s Hospital, on August 21st, we received an offical diagnoisis. Hannah was diagnoised with an Atypical Teratoid Rhabdoid Tumor or AT/RT for short. AT/RT is so rare that the doctors at ACH only saw one case every two to three years.

We then had “the talk” with Hannah’s oncologist. The talk that no parent should ever have to have. The talk that changed our lives from that point forward. The talk that makes you ask yourself, is it worth it? Is it worth putting your precious baby through the hell that they are offering? We learned about chemotherapy drug regimens, side effects, the percentage rates of survival (which was under 10%), the percentage rates of mortality, and radiation treatments. All of these terrible things were now part of our life.

September 4, 2008: Only a few days after her 4th surgery, one of which was to remove a tumor that had already regrown since her first surgery, Hannah had her first dose of chemotherapy. Most children get only two to three different kinds of chemo drugs, but Hannah’s protocol required at least 6-8 chemo drugs.

After 35 days in the hospital, Hannah was finally discharged. But less than 48 hours later, Hannah was back in the ER with a 102.2 fever.

We stayed at an apartment in Little Rock so our baby girl could finish her radiation treatments. We noticed that she began to get burns on her back from the radiation. The burn started out like a light pink sunburn the first couple weeks of her treatment but worsened over time. The burn was 6 inches long and blistering over her scar from her two previous back surgeries.

October 13, 2008: Hannah was finally released to go back home to Northwest Arkansas. We were able to enjoy a little over a week at home, getting used to our new “normalcy.”

October 29, 2008: Hannah had another MRI of her brain and spine to see what progress had been made. This would determine if there was any cancer in her body. The next day, we learned that Hannah was tumor free! Unfortunately, Hannah had been having a lot of difficulty with her ommaya reservoir since she received her chemotherapy 3 days prior. Therefore, on this day of celebration, our baby girl was going to have to have her fifth surgery to remove her ommaya and put a new one in on the other side of her head.

The night before Thanksgiving, just a few days after Hannah’s surgery, I noticed her head swelling, and her pupils were completely dilated. On November 29th, we were informed that Hannah had approximately 5 tumor cells that were growing at the base of her brain, and the whole lining of her brain was covered in cancer cells. Her left lung collapsed, leaving her in a comatose state and unresponsive.

We were again faced with a decision that no parent should ever have to make. My husband and I prayed a lot and decided that we did not want Hannah on a ventilator. She would not have the quality of life we would want for her, and the cancer had returned in such a short period of time. At 2:15 am on November 30th, we took Hannah off the BiPap breathing mask, the big mask pumping Hannah full of the oxygen she needed to stay stable.

The doctors thought she would pass away quickly, but she held her own for quite some time. On December 1st, we decided to turn the EVD off and take all the tubes and needles out of our baby girl. She was still holding on. It was as if we were just waiting for her to pass and Hannah was just not ready. Later that evening, the doctors let us take Hannah to our home in Northwest Arkansas. She was still holding on and struggling for each breath. The doctors did not think she would make the 3-hour trip home, but she did. When we arrived home, I believe with all of my heart that she knew she was home.

December 2, 2008: At 12:12 in the afternoon, Hannah opened her eyes one last time and looked at Jon and I then closed her eyes and went to Heaven.

Even though loss, disappointment, or failure can be crippling, we had to keep our Faith in the goodness of God and His love.

During our 4 month stay at ACH with Hannah, Jon and I witnessed many heart-wrenching situations first hand. It is difficult sometimes to know how precious, blessed, and wonderful your life is until your child has to endure so much pain and suffering, right before your eyes. We met parents that were unable to be with their kids while they were in the hospital because they would lose their jobs. This shouldn’t even be an issue during such a time. A parent should be able to be with their child when they are in a fight for their life. This is why our foundation Hannah’s HOPE came into effect.

Hannah’s HOPE (Helping Others Pay Expenses) is a 501c3 non-profit organization. We help Arkansas Children’s Hospital families that have a child with cancer pay their day-to-day expenses when their financial situation gets difficult. We have already helped six families with over $3,000 in donations. Over 12,400 U.S. children will be diagnosed with cancer this year. Hannah’s HOPE is getting new applications for assistance each month.

September is Pediatric Cancer Awareness month, and Hannah’s HOPE is spreading the word so that people don’t forget that kids get cancer too!

Visit www.hananhshopfoundation.org Read Hannah’s entire journey at www.caringbridge.org/visit/hannahboles.

This past year has been quite the journey, but by the Grace of God we are doing our best to create something positive from this situation. We want to help others that are going through a similar situation as ours.

Calendar of Upcoming Events:
Sept. 2nd. – Join us at Jump Zone! FREE with a donation. Goodie bags to be given out to the first 150 kids!

Sept. 10th. – Hannah’s HOPE 1st Annual Golf Tournament at the Creeks Golf Course

Sept. 12th – Hannah’s HOPE 1st Annual Benefit Gala

Sept 19th – Run Buffalo Wild for Childhood Cancer (5K/hot wing eating contest) at Lake Bella Vista in Bentonville, Arkansas 5K.

Sept. 26th Hannah’s HOPE Family FUN Carnival! Bob Henry Park in Siloam Springs, Arkansas. Pancake breakfast at 8am. Crafts, face painting, jump around, photo shoots, and much more carnival games