Stories of Inspiration: Facing “the Giant” as a Family

Our cancer journey began 10 years ago on March 6, 2001.  Our oldest of three children, Lauren, began having headaches.  After a few days and a CT scan, it was revealed that she had a brain tumor.  We live in South Georgia and were sent to Children’s Healthcare of Atlanta at Scottish Rite to see a neurologist.  A couple of days later, Lauren had her first craniotomy.  She did well and we were sent home in a couple of days.  We thought things were going to be okay.  We went home until it was time to have her staples removed a couple of weeks later.  This is when we received the news from the pathology report.

Looking back, we were in such denial.  We met with the oncologist and were given the results, a PNET/Medulloblastoma brain tumor.  Treatment would involve radiation therapy and extensive chemo.  Radiation and chemo were a nightmare.  Lauren remained inpatient for over five weeks, except for the weekday trips for radiation.  Lauren persevered.  It seems that every time things would look brighter, the clouds would come back and darken our days.

She endured countless surgeries and chemotherapy treatments, but to no avail.  Lauren fought long and hard for 2 1/2 years, but she went to heaven on September 24, 2003.  She suffered so much, but she always forced herself to smile.  She was such an inspiration to so many, and still is.

However, our journey didn’t end there.  Our youngest child, Jim, was diagnosed with his 1st brain tumor in March 2005, approximately four years after Lauren’s initial diagnosis.  Jim had a craniotomy to remove the brain tumor, a PXAstrocytoma.  He did extremely well and completed six weeks of conventional radiation.  From that point, he had MRIs every three months; until September 2009 they remained clear.  On a routine scan, it was discovered that Jim had another brain tumor in a new location.  He had another craniotomy.  He had some difficulty after the surgery (right-side weakness and speech challenges) that resolved themselves before he left the recovery room. 

Jim did well and we were sent home a couple of days later.  We went back after two weeks for the pathology report and staple removal.  This brain tumor was different than Jim’s initial tumor and not like the one Lauren had either.  It was a glioblastoma.  We learned all the treatment options and opted for Jim to have Port a Cath surgery the next day to avoid unnecessary “fishing” for veins.  We decided to try proton beam radiation in Jacksonville, FL.  Jim had 33 treatments and he finished a few days before Christmas 2010.

Beginning in January, 2010, Jim began having chemotherapy in Atlanta one day every other week.  He also takes an oral drug at home every four weeks for five days.  Until March 2010, Jim had done really well with this regimen. He began having difficulty speaking and right-side weakness.  After scans and speculation, it was determined that the problems were after effects from radiation.  We tried steroids, but the issues are still there.  He will continue on this chemo regimen until January 2012.  The doctors are hopeful that when he finishes chemotherapy, the weakness and speech issues will improve.

Jim hates the chemotherapy and there have been many times that we have had to convince him that it is for the best.  At times he is so depressed about the whole situation.  We are not battling the nausea as much, only the first couple of days; it is the tiredness and depression that seem to get the better of him.  He also has a lot of problems with his appetite and nothing tasting right.  He seems to find one thing that tastes good to him and that will be his staple for a while until he finds something better.  He is so ready to have this all behind him, we all are ready for him to be able to be the boy that is “normal” again without dealing with all of this stuff that a child shouldn’t have to endure.

My middle daughter, Kayla, has seen so much in her young life than anyone should have to endure.  She watched as her older sister, Lauren, died from this horrible disease and now has to watch her brother fight his own battle.  She is so caring and compassionate.  She deserves to be able to live her life and not have to endure all of these things, too.  She doesn’t complain and does what she can to make her brother feel better.  She is the best sister/daughter that you could ever ask for.  I hope one day, she can use her experiences to help someone in the same situation.

For now, we keep struggling every day to see the rainbow at the end of the tunnel.  Hopefully, it is a lot closer than it has been.  No matter what, we will face “the giant” known as childhood cancer at our house, as a family.

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About The Brain Tumor Foundation for Children

Founded in 1983, BTFC was the first nonprofit in the U.S. to focus on brain cancer in children. Our mission is to support patients and their families.
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