Make A Child Smile

Bethany's Story
written by mom Susan

Bethany was always a very healthy child. She was born on 6/10/93 and weighed 7 pounds 10 ounces at birth. She was generally a quiet and well behaved child who got along with everyone. She was a good student, and except for getting a terrible fever with the Chicken Pox on Christmas Eve during Kindergarten, and a dreadful flu again at Christmas during her 4th grade year, she was never sick.

Around Christmas 2008, she had been lifting weights in gym class. We believed she had pulled a muscle and began putting liniment on her shoulder. It seemed as if the sprain went away. It returned twice, related to what we believed to be exercise.

In July 2009, Beth started having trouble breathing, so we took her to the doctor. He believed she had asthma and prescribed an inhaler. By July 21, 2009, despite using the inhaler, Beth could not breathe. We rushed her to the emergency room. There, the doctor ordered a chest x-ray. We later discovered there were 11 tumors, including a very large chest mass. The chest mass was so large, Beth's windpipe was diagonal, aimed into a softball sized pocket that was the available area of open lung. Her lungs were full of fluid.

On July 21, 2009, Bethany was life-flighted to Children's Mercy Hospital. She had a pleural effusion and a chest tube was inserted for 10 days. Although the diagnosis of cancer was clear, it took over a month and consults from several pathologists at Vanderbilt University in Tennessee to agree on the diagnosis of Hodgkin's Lymphoma. Bethany had at least 11 tumors when we started this journey, including a very large chest mass. Her lung capacity was at 30%.

Beth had to be isolated to avoid germs. While taking chemo and recovering to bring back her counts, she was hospitalized with a neutropenic fever.

In October, Beth was retested and she had 40% lung capacity. She was often unable to walk without using her inhaler as she could not catch her breath. There is concern that there will be some permanent lung damage, but as this point we do not know the extent. Her first echo after three rounds of chemo showed some heart irregularities, but a second test cleared her for chemo. There is some concern that there may also be long lasting heart damage as a result of this struggle for her life.

On November 16th, she completed five grueling rounds of chemo which made her very very sick. The tumors responded to the last two rounds of chemo. At this point, doctors do not measure shrinkage. From what I could make of it, the tumors shrank at different rates those last two rounds. One tumor shrank only 5%, and another tumor shrank 25%. Her Pulmonary Lung Function test showed she had 68% lung capacity - which is much better than when she first started in July.

On December 1st, Beth began 18 days of radiation treatment which was also very hard on her.

Once radiation was over, on December 22nd, we finally went home!!

Bethany will have four PET scans throughout 2010. The doctors are cautiously optimistic as she presented with a large chest tumor and there was not 80% shrinkage of all tumors after the completion of chemo. Her first scan will take place in mid-February.

She also has appointments scheduled to follow her lung functioning (which will always be impaired), for physical therapy (as her spine grew crooked as a result of the chest tumor pressing on her spine), for bloodwork (as she is considered immune compromised due to the chemo and radiation therapy), and dental appointments (as the radiation to her throat and mouth as well as the chemo caused damage to her teeth.) She also has to have tests to monitor her heart related to the long term effects caused by chemotherapy.

We hope and pray that her scans show her cancer is in remission. The doctor did say that if it returns Hodgkin's Lymphoma is one of the few cancers that can be cured twice. However, she would have to undergo a bone marrow transplant if her cancer returned.

Scans and check-ups will continue regularly for five years.

Beth loves receiving mail, and this will definitely cheer her up as all this has been so hard on her, especially her self-esteem from losing her beautiful hair (pictured above), but her hair is now growing back, it is now about an eighth of an inch long. She is now trying to make her eyebrows look right, despite having only a few eyebrow hairs.

I am glad she has an 18 year old sister as she is kind of lost when it comes to her peer group. She is very sensitive and couldn't deal with the scrutiny from her peers, so she is not attending school. She is working on getting her GED. I am hopeful she will change her mind about this, but we are looking at getting her a tutor (currently she is working on an online course) The school was not receptive to her plight and would not send her work or give us a homebound instructor - so she essentially had no choice.

We're all looking forward to the mail that will come to Beth and her siblings. Samantha is in college but visits often, Nicole and Nicholas are always there for Beth, but are also having a hard time with all this, especially Nicholas who is just 14.

Thank you reading and keeping our family in your thoughts!

(Story and Interests were last updated January, 2010)
(Update 1/19/10 - Bethany's father passed away unexpectedly on 1/17/10)