You never wake up and start your day expecting that in a very few short hours a room full of doctors will be telling you that you are going to lose your little girl. How can this be? We can travel in space and destroy a country with the push of a button, but we cannot cure childhood brain cancer? Unfortunately, we cannot, and too many of us have lived this exact and horrible day. For my family, this day struck us on September 29, 2014.
Our daughter’s name is—wait, still so hard to believe that she’s gone—was Morgan Taylor Savage. She was six and a little over a month into first grade. Every parent considers his or her children special and beautiful. Morgan was no exception, and in fact she was loved and cherished by so many family and close friends in our small town of Rock Hill, SC. The support that we received (and still receive) has been a humbling experience.
Morgan’s initial signs were faint, and the doctors said that we “caught it early.” One of the many problems about DIPG is that it affects every one of its victims differently and at varying tempos, with the ever-looming shadow of the inevitable. Morgan suddenly became more clumsy than usual. The weekend before her diagnosis she began favoring her right arm and relying more on her left for the most mundane of tasks. Morgan had also begun becoming over-emotional for almost no reason. When she would cry during one of these emotional outbursts, at times it almost looked as though she was smiling. We chalked it up to the summer fun with the family coming to an end and her beginning first grade. She had always been a very sweet child and big sister, so we should have probably questioned this a little more in hindsight. Regrets, another negative by-product of this disease that affects the survivors, especially the parents…
We were admitted to St. Jude Children’s Research Hospital a week after Morgan’s diagnosis. The treatments were just what you would expect; Morgan received radiation and experimental chemotherapy to try and pinpoint the largest infestation of the tumor. Morgan was so very brave, and was even able to lie still through many of her treatments. As the steroids began doing their job, they also created a side affect that made Morgan uneasy at any height or movement. At this point we were forced to sedate her for her remaining radiation treatments. This made the days full of long waits, lengthy and drowsy recoveries, and really limited us from taking advantage of much of anything “fun” to do during our captivity in Memphis. It also made it hard to get our minds off the real reason that we were there.
There are so many pictures of Morgan. She was such a happy little girl! Even while in Memphis for those three months, in nearly every picture she is wearing her trademark contagious smile. She was always able to find the good in every aspect of her illness, and sometimes even that was enough to boost our spirits. It never made us forget the monster that we were fighting, but it did give us some peace to know that she still felt happiness and love in those last few months of her life.
Morgan returned from SJH in time to enjoy what would be her last Christmas. A week after Christmas she went on her Make-A-Wish trip to Hawaii. DIPG does not take vacations, and although Morgan walked onto the plane she was in a wheelchair about two days into the trip and never made it out of one. With everything that we read about her illness–not that there was much information—we had at least hoped for the “false hope” stage. As we would learn at her follow-up later, Morgan was a percent-of-the-percent of patients that saw no results from treatment. The best that we could do was to keep her as happy and as comfortable as possible. When we saw how quickly she was deteriorating, we even moved up her seventh birthday party. This was one of the smartest decisions we had made during this tough time.
Somehow through all of this Morgan’s spirit never failed her. Though her body went through drastic physical changes, the funny sweet little girl still let us know that she was in there. As it was obvious that things were progressing rapidly, we called family and close friends to the house. Morgan was surrounded by love in her last days, and she was still able to reciprocate that love with her smile, or sugar (what she called kisses), or a gentle hug with her weakening left arm (she had completely lost the use of her right one months before.) Morgan loved us all so much that in the last hours of her life she put up an all night fight against the tumor in her head. Finally, in the early morning of May 22, 2015, Morgan was at peace. She would never have to take medicine, or sit in a wheelchair unable to move of her own free will, or have her port accessed, or anything terrible again. Ten days away from turning seven and just eight months since her diagnosis, we had lost Morgan. Ultimately she had been healed.
How do you the survivor become healed from such a devastating loss? A scar never goes away and surely the loss of our precious Morgan has left such a blemish on all of our broken hearts. Do you heal with hopes and prayers? Absolutely, if they are applicable to your beliefs. Our family has been wrapped in the arms of our small community, and our friends and family continue to shower us with their love. We invite you to read more about Morgan and her valiant fight at our Caring Bridge page, titled “Roll With It Morgan”.
Educate yourself about DIPG. Learn what you can from this site and search out any others. It won’t take you long…there just isn’t that much data on the topic and no medical advancements in 30 years. What has to happen for this last statistic to change? We need you. There are only we 250-300 families a year that have to watch helplessly as our child’s life slips away from DIPG. This isn’t going to be a loud enough voice to get somewhere closer to a cure. These losses, though seemingly few, are absolutely unacceptable. My family is living through ours already, but I hold the hope in my heart that you will never have to. I cannot do it alone. The family that hosts this site cannot do it alone. Please read the desperation in my words and take some ownership in helping to find a cure, and some solace if you’re fortunate enough never to have had a child with such a deadly cancer.
“Children hold our hands for a while, but our hearts forever.”
Submitted by Morgan’s father, Robert.