In February 2007, we learned that our daughter Caroline (then 6) had difficulty with a portion of her school vision test.  Caroline never complained of any visual problems nor had her teachers mentioned any concerns.  In mid-April, while on vacation, we noticed a jerking movement in Caroline’s left eye for the first time.  We thought nothing of it and suspected it was related to the “vision issue” her school nurse had astutely detected.  Fortunately the ophthalmology exam we were advised to schedule was just days away…not to worry. 

The morning of the appointment we had so many questions.  We wondered if Caroline’s “eye issues” could be resolved by wearing a patch a few hours per day.  Would her condition improve with age? If per chance Caroline needed glasses, what style and color frames would she select?  By afternoon, however, we learned that not a patch, age, nor colorful frames would resolve her problem.  Caroline had no correctable eye disorder or disease.  In fact, Caroline’s eyes were healthy, despite one with visible uncontrollable jerking. It was suspected that the cause of her eye issues was neurological; possibly the result of a “lesion on her brain”. 

An MRI was scheduled for April 26, 2007, two long days later at the Children’s Hospital satellite facility in Waltham, MA.   We hoped and prayed that all of our Google-fed suspicions would be dismissed with the discovery that some harmless genetic abnormality was the cause of the problem.   We could get used to the nystagmus, it wasn’t that noticeable.  When we checked in that morning, the receptionist told us that after the MRI we could leave and expect a call with results that afternoon.   We never made it home that day. 

Immediately after the scan, we were led to a small conference room. Not a good sign. The MRI technician handed us a cell phone. Things aren’t looking better. Caroline’s pediatrician was already on the line and she gave us the results.  Caroline had a plum sized tumor lodged deep inside her brain. We were instructed to go immediately to the ER at Children’s Hospital in Boston where a neurosurgeon would be waiting to see us.  Our lives and world were changed forever.

Caroline was admitted to the hospital that afternoon.  Surgery, it was decided, could wait and might not even be an option.  A biopsy would be scheduled. We spent those first few, horrible days in the hospital doing more tests, crying, meeting surgeons, crying some more, meeting oncologists and crying yet again.  Caroline, on the other hand, really had it together those early days.  She consistently went with the flow and stepped up to the plate.  The girl who hated to have her temperature taken and to put on band-aids was now doing MRIs and CT scans without sedation.

So many things go through one’s mind upon learning your child has a brain tumor.  How could this be? Is this really happening? There were no signs, no headaches or seizures. Caroline was always so healthy and had nearly perfect attendance in school!   Caroline only had annual “well child” visits with her pediatrician.  Where in the world did this thing come from?  How long had it been there?   We just celebrated getting through what we thought would be our “greatest life challenge”: Dad’s National Guard Deployment which included a brief period of time in Iraq.   This had to be a big mistake.

There really are no words to properly describe our initial shock and absolute utter despair.  What did this mean?  Where do we go from here?  There were no clear, simple or easy answers. Although numb from the start, we still knew that no amount of wishing or hoping would make this bad dream go away.  In those early hours we received a lot of guidance from some truly amazing nurses in the “9 North” Unit at Children’s Hospital.  We remember the words of one in particular, when we asked her if things ever got better.  She told us of our two options: we could either live in denial or embrace it.  Those who embrace, she advised, fare better.   We knew the choice we needed to make. 

Caroline’s tumor is a pilocytic astrocytoma optic glioma. (She, however, has some other choice words for it).  Although “low grade” it remains inoperable and incurable. Located in the hypothalamus/optic chiasm region and the size of a plum, it has all sorts of arteries and nerves wrapped around it.   Presently (and unacceptably in this day and age), the best course of treatment for her chronic condition is toxic chemotherapy which, we hope, will inhibit the tumor’s growth for the time being.  Her tumor will not go away and it is unlikely that the poisonous chemicals that she receives will even cause it to shrink.  At some point it will see “progression” and further invade her brain.  When that happens, she will treat again.

Caroline started “treatment” on June 5, 2007 at the Dana-Farber Cancer Institute. She has been participating in a clinical trial testing the efficacy of a combination of three types of chemotherapy (carboplatin, vincristine and temozolomide.)  Initially, Caroline experienced minimal side effects including fatigue and appetite loss.  But by the end of the 10-week induction period the cumulative effect of these toxic chemicals began to take its toll.  Now Caroline frequently experiences problems with her blood counts.   Low platelets pose the danger of bleeding and inability to clot.  Low white cells affect Caroline’s immune system.  Low red cells affect her ability to carry oxygen through her body.  There have been hospitalizations, blood transfusions, and bacterial infections.  Most recently Caroline has experienced an allergic reaction to one of the forms of chemotherapy she receives. 

Having a brain tumor is without a doubt a bother when you are seven years old.  Caroline is required to take a daily antibiotic that tastes awful and looks like thick yellow poster paint.  It stains her teeth and anything else that it comes in touch with (usually her face).  Let’s not forget the need for a regular dose of laxative.  A Port-a-Cath implanted in her chest presents the constant worry of bumping into her rough-housing brothers or children at recess.   She has had to turn down numerous birthday party invitations.  When you have fluid and slight swelling in your brain, you really can’t do things popular with the first grade crowd such as inflatable jumping gyms and gymnastics.  When your “counts” are down, you really shouldn’t be around people.   It is even a bother to miss school due to clinic visits, diagnostic tests, doctor’s appointments and MRIs.  It is even pretty bad when you have to get pulled out of music class to head into the clinic for a blood transfusion.  It can be depressing to look in a mirror and realize you don’t have your trademark, full head of thick, shiny hair pulled back with a colorful ribbon.  You wish, sometimes, you had never heard of Purell. 

Caroline is not alone in this struggle, her brain tumor is also tough on her loving brothers, William and Aidan.  Will and Caroline are very close, only 17 months apart, they are the best of friends.   Will, almost nine, is very sensitive and constantly worries about his sister.  He wonders if she will die and is afraid of giving her infections.  He just wishes she didn’t have that “thing in her head” so he could hit her again.   Aidan, just four, doesn’t really understand as much as his older brother.  Nevertheless, our attempts to instill healthy hygiene have turned the child into a germaphobe.   Will and Aidan have had to endure  restrictions on activities, constant changes in plans, and the inability to plan anything due to Caroline’s condition and/or treatment.  Perhaps hardest, they have been compelled to adjust to the increased level of stress that often permeates our household. 

It is hard as parents to answer the constant, well-intentioned, question: “So, how is she doing?”  We assume that the chemotherapy is effective as her tumor has appeared stable on her scans.  Or is the alleged stability not due to the chemotherapy, but rather because this slow growing time bomb coincidentally may just happen to be in a dormant phase?  Then again, is it really stable?  Has there been subtle growth that cannot be detected by the scans?  Why can’t we explain the loss of vision Caroline experienced somewhere between her August and November scans. The truth is we really don’t know what is going on in there. 

We do know some things, however.  The past year has certainly been a learning experience in many respects. We have learned a lot of “big fancy words” as Caroline would say.  Suprasellar.  Glioma.  Nystagmus.  Neutropenia.  Hemianopsia. Pilocytic Astocytoma.   We can pronounce and spell T-E-M-O-Z-O-L-O-M-I-D-E.   Despite the lack of proper medical training, we can now hold our own in dinner party conversations pertaining to radiology, neurology, oncology, hematology, ophthalmology and microbiology.  (If we had dinner party conversations).

We have learned that no matter what the cynical may say about the state of humanity:  there are good people in this world.  We have been blessed to make the acquaintance of some of the kindest, generous and most thoughtful people. We now have new friends, that we have never met; and friends we would never had met, but for what fate has brought our way.  We have been bestowed with cards, gifts, home-cooked and delivered meals and house cleaning assistance.  We have benefited from fund-raisers for medical co-payments and travel and parking expenses.  Friends have walked with us, for us and beside us.  We have been carried through this, too, by silent supportive thoughts, sincere prayers and heartfelt smiles.  It is truly humbling to be on the “receiving end” of so many gestures of love and kindness.  While eternally grateful, oh, how we would rather be doing the giving. 

We have been blessed by the power of prayer.  People tell us we are amazing and of how they marvel at our strength and courage.  They tell us that they could not handle something like this happening in their lives.   A year ago, we would have said the same thing.  Something, better yet someone, gets you through.  There is no other explanation.  

The most important thing we have learned this past year is how blessed we are to have such an amazing daughter.  Despite all the hassles and aggravation, Caroline has exhibited resilience, humor, grace and incredible strength.  She truly inspires and motivates all those with whom she comes in contact.  Her smile remains contagious.  We are so proud of her.  She takes the “thing in [her] head” with great stride. She delights in saying “bad words” to her tumor.  (Most are not really “bad”, although her repertoire is expanding! Yikes!)  She is wise beyond her years and has tremendous faith.  We will never forget her telling an adult friend with a serious illness how “God picks people like us to show other people how to be brave.”  She keeps us going.  We love her so much. 

A year later, our story continues.  Certainly there are times when we long for the days when we didn’t know better, when we were still naïve.  But, we have chosen to “embrace” our reality.    The choice has not been easy, especially with all the sleepless nights that come along with it. But, our journey moves forward.  We shall continue to strive to enjoy our blessed lives, our beautiful children, our amazing family and our special friends.  We will endure somehow.  Along the way, we will do everything in our power to support better treatment options and ultimately a cure for Caroline. This shall be a life experience.  And as we told our Chickaroo on April 26, 2007 as we passed Harvard Medical School on the way to the hospital, one day she is going to have a great topic for her college admission essay… a genuine survivor story. 

We thank you for joining us and being part of our story.  Your love, prayers and enduring support truly sustain us.

Most sincerely,

The Hamilton Family
Rick, Sarah, Will, Caroline and Aidan
April  10, 2008