Heroes for Jordan
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Jordan Atherton


Jordan Alyssa Atherton was born on September 17, 1999,  our first child.  She was healthy and happy and smart and she grew and learned everything right on schedule for the first two years of her life.  Everything changed two months after her second birthday.  She started to complain that her head hurt and was having trouble with her balance.  We took her to see the pediatrician and she was diagnosed with an ear infection and sent home with antibiotics.  When she finished the medication, but was still complaining of pain, we took her down to Children's Hospital in San Diego just a few days after Thanksgiving 2001.  The doctor had her walk down a straight hallway and it was apparent right away that something more was wrong.  Jordan was taken in for a CT scan and within hours was diagnosed with a brain tumor.  Just 36 hours later on November 29th she was in surgery, having the golf ball sized tumor removed from her brain and we were given the diagnosis of Medulloblastoma, the most common of the malignant brain tumors in children.  The tumor had been blocking her fourth ventricle, causing hydrocephalus.  This was the cause of the headaches and balance issues.  Once the tumor was removed, Jordan required a shunt to help the ventricle to drain properly.  Without it, the pressure would once again build to a life threatening level.  Jordan was considered a high risk case because she was younger than three years and also because the cancer had metastasized down her spinal column.  This greatly reduced her long term chance of survival.  At the time we were told she had a 30% chance to survive five years, and less than 5% chance of long-term survival. 

 

Two days after Christmas Jordan started her chemotherapy protocol, which had her inpatient for days at a time with low blood counts and nausea, fighting the effects of the drugs as they hopefully killed any cancer cells that remained in her body.  This regimen went on for the next five months, during which time her baby brother was born and became basically her only playmate since she was so susceptible to infection.  The next part of her treatment consisted of high doses of chemo to completely wipe out her bone marrow, followed by a stem cell transplant of her own blood stem cells which had been collected earlier during her treatment.  This process was repeated three times and kept her in isolation from other kids and the public for a total of six months, until December 2002.  This treatment was especially hard on her tiny body and she had to go on IV nutrition to avoid losing too much weight.  At one point when her resistance to infection was non-existent she contracted an illness that caused her body to go into septic shock.  Her limbs turned blue and she shook uncontrollably.  Luckily, her doctor took immediate action with high doses of IV antibiotics and the infection was brought under control.  

 

Once Jordan was released from the hospital and from isolation, she remained in remission (no evidence of tumor was visible on her MRI scans) until April 15, 2003 when her scan showed that she had relapsed to multiple locations throughout her brain.  We had hoped to avoid using radiation because we knew the devastation it could cause, but that was not to be.  Jordan once again re-entered active treatment and underwent proton beam radiation to her full brain and spine.  This process took 7 weeks and she was sedated daily for her treatment.  Once radiation was completed, Jordan took an oral chemotherapy for the next year, finally finishing treatment in September 2004.  

 

Jordan's scans remained stable, showing no evidence of disease.  We did have a scare in May 2008, when some suspicious enhancements appeared on her spinal MRI.  Her oncologist was convinced the cancer had returned, but Jordan's neurosurgeon took a more conservative approach and suggested doing a biopsy.  We agreed with the neurosurgeon and so he biopsied nine samples from the area noted on the MRI and found nothing abnormal.  The cancer wasn't back after all!  The surgery was difficult to recover from and caused a great deal of pain, but Jordan powered through it just like she always has in regard to her treatment.  

 

Since that scare, Jordan has continued to have stable MRI's and has just this year, finally "graduated" to having scans only once every year.  She is now a ten year brain cancer survivor!  

 

As a result of surgery, chemo, and radiation, Jordan has a number of permanent negative side effects.  She suffers from Growth Hormone Deficiency, which requires a daily injection of human growth hormone to keep her growing properly.  Prior to replacement, she was falling further and further behind in her growth to the point that people thought she and her brother were twins.  With hormone replacement therapy, she is now average height for her age.  

 

Jordan also has bilateral high frequency hearing loss and wears hearing aides to help correct the problem.  She receives speech therapy due to a difficulty in producing certain sounds, which was identified when she was only four years old.  This may have been caused by the tumor and the surgery, but it could also be a result of neurological damage from the chemotherapy.  

 

This year, we learned from a visit to the Orthodontist that Jordan is missing many of her permanent molars.  Sometime in the next few years, when her primary teeth have all fallen out, she will be in need of dental implants.

 

When you look at Jordan walking down the street, she may not seem much different from other 12 year old girls, but if you stop to talk to her you will quickly realize that she is not at all the same.  Her cognitive processing speed is low and she has difficulty expressing herself at times.  It's like having a drawer in her brain that sometimes won't open when she wants to retrieve information.    Learning new information requires a lot of repetition and at age 12 she reads at a second grade level. She attends the public school's Special Day Class and requires an aide when she leaves that classroom for P.E, Art, Music and other electives as well as during lunchtime.  At this point we are pleased with the progress she is making in the public school, but as she approaches High School age, we have been researching other learning options such as private special education schools, in order to find more enriching programs.  Some great interests of hers include riding horses and cooking.  We hope to be able to provide specialized instruction in those areas in order to increase her quality of life and hopefully instill some independence.  

 

Perhaps one of the biggest concerns with Jordan is her lack of understanding of much of the world around her.  Most girls at her age are forming close bonds with other girls, meeting up for after school and weekend activities and learning to be more independent outside of the home and family.  Jordan is far from ready for these type of activities.  She has dreams of her future occupation like other girls.  She is very easily influenced and not always aware when someone may be a threat or even just making fun of her.  We realize that as an adult she may never be able to live fully independent of us, or some sort of caregiver.  This is a very difficult prospect to face, as all we have ever wanted for her is to be a fully functioning member of society, able to do whatever it is that she wants to do.  We are facing the idea that cancer may have robbed her of that future.  Someday, we hope to have a home where she can have her own space, to come and go as she wishes, but where she is close enough for us to monitor her and help if she needs us.  

 

Jordan's future is uncertain, both medically and cognitively.  The further she gets from her initial diagnosis, the less likely she will relapse with Medulloblastoma.  However, her risk of developing secondary cancers is much greater than the average person.  Many childhood cancer survivors have developed secondary leukemia, thyroid cancers and skin cancers resulting from their treatment.   She is also at increased risk of heart disease, kidney and liver disease, as well as cataracts. Due to radiation to her brain, her risks of brain aneurysm and even stroke are elevated.  

 

For now, Jordan is a sixth grader, she's a loving daughter, she's a big sister who both dotes on and fights with her 9 year old brother and 5 year old sister.  She loves all animals (except bugs!) and she loves to watch the Food Network.  Sam the Cooking Guy and Guy Fieri are her favorites.  She loves fancy cars, dressing up and being pampered.  She listens to music and loves to sing along even without knowing the words or carrying a tune.  She loves to polish her fingernails, hates to be told what to do, enjoys school where she calls every student her friend.  Most of all, she loves to be included in what everyone else is doing and talking about.  Basically, she's a wonderful boisterous child who was dealt a very difficult hand and does the best with what she's been given in life.  

 

We just want the best for Jordan, and we are doing our very best to make sure she has every opportunity to reach her full potential.
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