Rachel’s Place – Surviving Medulloblastoma

 

Hope3B_edited-1Today, “Rachel’s Place” is with her family somewhere between Hope and Peace. She actually lives near Bel Air, Maryland, but her real place of comfort and security is anywhere she and her family are together. Each year during Brain Cancer Awareness Month,  time seems to stand still for her parents as  they prepare for the annual MRI to check and see if Rachel is still cancer free. On May 14, 2013 they got the word that her scan results were clear again.  This was the sixth year in a row!

Mike&RachelIt seems like a century ago when Rachel was two years old and cancer free. Back then, those were happy days. Michael and Brandy Riskin had no idea of what Medulloblastoma was.  Now, they know  much too well what it is and what it can do.

Video: In the beginning

Video: In the beginning

Even though it represents about 14 percent of the childhood brain tumors, Medullo-blastoma is not very well known.  Sometimes it is  referred  to as “PNET” (infratentorial primitive neuroectodermal tumor), it is a malignant brain tumor located in the Cerebellum region of the brain. It only strikes two in a million people and it is ten times more likely to affect a child than an adult.  Forty percent of these rare cancers are diagnosed before the child reaches five years old.  Since it is uncommon, the symptoms  are often associated with other ordinary childhood illnesses.  Delay in obtaining a proper diagnosis can have devastating effects.

brain-tumors-161407.gifThe symptoms for this cancer often begin to appear for one to five months before the diagnosis is made. The child typically becomes listless, with repeated episodes of  headaches, which may lead to misdiagnosis of gastro-intestinal disease or migraine. The child may even walk with an unusual gate. Later on, positional dizziness, vomiting, and involuntary movement of the eyes are also frequent.  In some cases of late diagnosis, where the tumor isn’t discovered until it’s already causing damage to the   brain,  facial sensory loss or motor weakness may be present.

During the summer of 2006, Rachel was having some problems. She would often fall for no reason, and she threw up several times. During Rachel’s first few doctor’s visits, they looked at all the other causes for the early symptoms. The severity of her symptoms increased quickly, due to the large size of the tumor and excessive fluid buildup in her brain. On September 18, 2006, with a severe headache and vomiting, Rachel was taken to the emergency room and the tumor was discovered. Due to the dangerous increasing pressure on her brain, Dr. Ben Carson, at Johns Hopkins, performed brain surgery on her the very next day. It was only one month after the young girl’s 3rd birthday.

Dr. Kenneth Cohen and Dr. Rachel Rau were in charge of her treatment plan.  In an article published by Saint Jude’s Research, Dr. Cohen happened to Rachel&dylanread about a new method of treating medulloblastoma just a few weeks before meeting Rachel for the first time.  The article suggested that using 5 cycles of a very high dose chemo and changing the timing of radiation treatments worked better than the old protocol for some highly aggressive cancers in young children.  It was a life saver for Rachel that Dr. Cohen happened to read this particular article when he did. Rachel’s tumor was so aggressive it is very likely that if the normal treatment had occurred, she would have a very low chance for survival. After the surgery, she also needed chemotherapy, radiation and a bone marrow transplant (BMT). That’s a lot for a three year old! During the third and forth cycle of her chemotherapy, Rachel’s mom was pregnant and because the powerful chemo could be absorbed through the skin and would cause harm to the fetus, she could hardly touch and hug her little girl. At one point Rachel lost her ability to speak, and after several difficult months, on Christmas Eve, all of a sudden, she started speaking again. Now that’s a Christmas present!DrCarson

Mike and Brandy’s hero, besides Rachel, in this whole ordeal is Dr. Ben Carson of Johns Hopkins who, ever so delicately,  removed the tumor from her brain. Dr. Carson has been known for years as a brilliant neurosurgeon. The number of lives that he has saved, and the amount of respect and awe that he has earned in the world is undeniable. Lately, he has also become known as an outspoken political figure, and an advocate for reducing the amount of waste in the healthcare industry. Because of national news coverage, he is viewed by many as a very articulate gentleman who candidly addressed many of his political views and concerns at the National Prayer Breakfast attended by President Obama.  Since then, a movement has started to try to get Dr. Ben Carson to run for President in 2016. Regardless of what Dr. Carson does, he will always be the Riskin’s number one hero.  After all, you never know what the future will bring. Someday, Rachel may be in a very small, elite group of citizens who will be able to testify  that the President of the United States really got inside her head, and changed her life!

Rachel3rdgradeThrough it all, countless days in the hospital, unable to work, chemo, bone marrow transplant, radiation therapy, surgery, nearly a million dollar hospital bill, pregnancy, the birth of Dylan, emotional, financial stresses,  and you name it, the Riskin family stayed strong because of the support of friends and relatives. Nothing, absolutely nothing is more important to a family in a situation like this than the Rachel&Dylan2support of family and friends.  They were the window of normality and the glue of togetherness that helped them cope and meet each new day with hope for a better tomorrow.

Video Rachel gets honored at school!

Video: Rachel gets honored at school!

Today, at nine years old, Rachel is a healthy third grader on her way to fourth.  She enjoys playing with her best friends, Vicky and Cassidy and her brother Dylan. She also enjoys spending time with her cats, Lucy and Linus. She really enjoys creating her artwork and especially taking care of babies of friends and relatives.

Rachel2016_edited-1May 19, 2016: In just 4 months, Rachel will be 13 years old and more than 9 years cancer-free. Her parents write, “We continue to enjoy the kind hearted, empathetic nature that she shows to everyone around her every day. Rachel is now in the 6th grade and continues to thrive, despite the overwhelming odds she faced as a toddler in 2006.

Rachel loves arts and crafts, music, and reading. Due to the radiation exposure to her brain at such a young age, math continues to be a struggle for her. However, she works very hard to learn and continues to make progress each year. She has beautiful cursive handwriting and loves to write at home.

Rachel loves to spend time with her friends and family, and never misses an opportunity to do so! She is also really wishing for a pool party and a cell phone for her 13th birthday! Having Rachel, and her 9-year-old brother Dylan, makes us feel like the luckiest parents in the world!”

Author:Joe Baber

Editor’s Note: We should celebrate each and every success in childhood cancer loudly and with fanfare because each one offers a glimmer of hope that, one day, yes, one day no child will ever have to suffer under the name of cancer.  While we celebrate Rachel’s life here today, we do so in remembering all the parents who have lost their children because cancer has stolen them. No parent should ever have to endure such grief.  None of us should ever be comfortable in random success, but should be inspired to work even harder and longer until that day comes when no parent hears the words, “I’m sorry, your child has cancer.”

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2 Responses to Rachel’s Place – Surviving Medulloblastoma

  1. Carson's mom says:

    Carson wrote a book that was published 6 days before he died, CARRY ME , it’s in the Library of Congress & for sale on our website…I would LOVE. Dr. Carson to read it…my Carson died fr medulloblastoma, Congressman McCaul is my friend…he has read CARRY ME!!! I spoke in his DC home, Sept, 2010, kicking off his childhood cancer caucus…which turned into CREATING HOPE ACT…

  2. Amilcar Castellano says:

    Rachel
    Your story is filled with examples of love, dedication, hardship, faith, hope and of life itself. I can certainly tell your grandparents’ love and desire for your recover. A celebration for being disease free is in order.
    Congratulations to all!!’
    Amilcar Castellano and family

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