OCEAN CITY – Amy Wood remembers having an almost out-of-body experience the moment her 4- year-old son’s pediatrician uttered the words that changed her family’s lives forever.
“He said, you need to go to a hospital immediately, because this could be a sign of a brain tumor or brain cancer,” recalls Wood. “I just felt like I was floating above the room and watching that conversation from outside of my own body, and thinking, is that what he really just said? But, looking back on it, I think I knew right then that everything was going to be different.”
The Fork In The Road
May 21, 2015 started like any other day at the Wood family house in West Ocean City.
Amy, a small business owner and her husband Shawn, who manages MR Ducks restaurant, were getting their 4-year-old son Alex ready for another day of school at Most Blessed Sacrament.
“We love our mornings together,” she said, “but I had noticed Alex’s eye was drooping a bit for some reason. It almost looked like his left eye was crossing, but since it wasn’t bothering him, and we have a history of lazy eye in the family, I didn’t think much of it.”
Alex, a talkative only child with a cherubic smile, blond hair and an intensive vocabulary, was, even in preschool, hailed by his teachers’ as the class ambassador or diplomat.
“He’s a cautious kid,” said Wood. “He’s a quirky soul, who gets along with grownups sometimes even better than he does with kids his age.”
Alex had complained a month prior about headaches, but when he stopped complaining about it, his parents dismissed the concern, chalking it up to probable allergies.
A few hours later, Alex’s teacher contacted Amy to inform her about the aforementioned eye drooping, but added that Alex was a bit wobbly when walking.
“I made a doctor’s appointment and pulled him out of school and took him in that afternoon,” remembers Wood. “After about 10 minutes of looking at Alex, the doctor told me we need to go to Hopkins immediately. It was the longest three-hour drive we’ve ever driven.”
While Alex slept in the car, Amy and Shawn sat almost silent, trying to somehow process the doctor’s dire words in their heads as they raced westbound on Route 50 toward the Chesapeake Bay Bridge.
“I remember thinking, we are at a real fork in the road here,” said Amy Wood. “I think I had already skipped several steps ahead in my mind and was worrying how we were going to tell our families, and wondering if people were going to treat us differently or even talk to us because I just knew that our lives had gone from being everyday people to all of a sudden being people whose lives are spent in a hospital.”
‘We Need To Do The Surgery Now’
At Hopkins, Amy and Shawn waited anxiously for answers as little Alex underwent an MRI scan. They stood in the waiting room and were approached by a passing doctor who was going off duty.
“She said, ‘they found something in the MRI and the doctors will be out shortly to talk to you about it,’” recalls Amy. “Then she just sort of walked away, as we stood there completely stunned.”
When the neurosurgeons came out shortly thereafter, they showed Amy and Shawn the scan which showed a benign mass on Alex’s brain that was putting pressure on his optic nerve.
Later, they would learn that the tumor in the middle of their child’s brain was an extremely rare one called a Craniopharyngioma, which is only diagnosed in about 120 children under the age of 18 per year.
After another MRI scan, doctors chose to operate immediately, and luckily, the tumor detached rather easily and entirely in a surgery that lasted about five hours.
“It was the scariest day of our lives,” said Amy. “We were exhausted, and terrified, but we knew we were at the right place [Hopkins] and all the nurses kept telling us that when the surgery was over, Alex would be awake, and everything would be fine. We honestly thought we were out of the woods, but when they brought him back out of the surgery, Alex didn’t wake up, and our fears came rushing back all over again.”
Surviving Survival
The morning after the emergency surgery which successfully removed the benign tumor on Alex’s brain, the Wood’s learned the damage the tumor left behind.
Alex slept for the vast majority of the days and weeks to follow when Amy and Shawn met with their new Endocrine team at Hopkins, who explained that the tumor had been located on the portion of the brain called the supersellar region, which houses the pituitary gland and the hypothalamus.
“The tumor basically wiped out his pituitary gland and all the ability to create hormones on its own,” explains Amy Wood. “He also had developed diabetes insipidus (a rare form that is caused by the pituitary hormone vasopressin, which regulates kidney function), adrenal insufficiency (adrenal glands don’t produce enough growth hormones) and other side effects.”
The diabetes insipidus was the big concern during their three weeks in the PICU (Pediatric Intensive Care Unit) at Hopkins, as they toiled over getting the dosage right to regulate Alex’s fluids.
“He no longer had the hormone that tells your kidneys when to go and when to stop going,” said Wood, “so he was just going.”
Alex went from hyponatremic (low sodium in the blood) to hypernatremic (sodium levels so high, dehydration is a concern) so quickly that Amy and Shawn realized how much of a “numbers game” diabetes insipidus was going to be for the foreseeable future.
“We were almost grateful that he was sleeping so much, because he missed all the really awful stuff,” said Amy. “It was really kind of a blessing, but when he was awake, and we would walk around, we would have these little moments with him where the lights were sort of coming back on, and he would show us little glimpses that he was still in there, and we knew then, that we were eventually going to be okay.”
Little by little, Alex stayed awake more and more, often saying little prayers and singing his favorite Zac Brown and Wiggles songs into a little toy microphone between mic checks of “testing 1, 2, 3.” His recovery moved from Hopkins to Kennedy Krieger Institute, and his parents decided that if life was going to be a numbers game, it was time to get proactive.
“We started doing spreadsheets to monitor the amount of fluids he took in, and the amount that he was peeing out,” said his mother. “Then we decided, there should be an app for this, so we built one. It’s helped us manage his fluid levels a bit ourselves so we can find some sense of normal again. People always talk about two things when you go through something like this, they say you have to find your new normal, but you also have to survive survival.”
Bumps In The Road
The Wood family returned home after a month at KKI, but found themselves Medevac-ed back to Hopkins after Alex’s health took another turn.
They knew the road back would be long and hard, and their lives may not look the same ever again.
“I went from a completely normal kid going to school on Thursday morning, to being in the OR having major major brain surgery the next day,
said Amy. “Now we are talking IEP’s and special needs and sometimes I can’t even fathom talking about all of this sometimes because it’s so hard to wrap my head around all of it.”
To say that May 21 was a turning point in the Wood family’s existence is a vast understatement, and the days that have followed have been filled with tumult, joy, and the expected daily grind of trying to find a new sense of normal.
“It’s a grief process for sure,” said Amy. “In my head, there is the old Alex and the new Alex, and the old Alex is coming back little by little, but through all of this, I’m grieving for the loss of some of that.”
Amy says that through it all, Alex still thinks he is the same kid as he ever was, but they struggle with the realization that he may not be able to run up the slides at the playground or be as active as other kids his age.
The tumor also claimed the ability for Alex to grow naturally, so he will have to take testosterone as well as various other forms of medication for likely the rest of his life (Currently, he’s on about four different daily medications).
The fact that his adrenal glands don’t work also poses a problem if he is ever knocked unconscious, as the glands normally release cortisol to fight off inflammation in the body, and because of this, Amy and Shawn must always carry a shot (Amy likens it to a larger version of the popular Epi-Pen) with them at all times.
“That’s probably the scariest and most life-threatening thing for him,” said Wood.
Alex’s metabolism is compromised, so it is common for kids with his condition to gain a lot of weight, and Amy and Shawn must continue to monitor his fluid levels with their newly created app at all times.
“Sometimes, we feel like we are spending our entire evenings in the bathroom with him,” said Amy. “We are all in there with the iPad, getting him to pee into a cup, or weighing his pull-ups to log in his fluid output and measuring the amount of fluids we are giving him.”
The problem is the damage to his hypothalamus means Alex doesn’t have a sense of thirst so Amy says getting him to drink the special sugar-free lemonade or milk is sometimes a challenge.
Still, Amy believes Alex and her husband are all finding their own paths to this new sense of normalcy.
“We could look at it two ways,” said Amy Wood. “We could say, ‘it robbed him of everything and this defines him and our family’ or we can make sure that it doesn’t define him or our family, and that’s what we are trying to do.”
Luckily, there is no evidence that the tumor will ever come back, but statistics say that it could.
Alex Wood, who turned 5 years old this week, is pictured last month on the first day of pre-kindergarten at Most Blessed Sacrament school.
Amy and Shawn weighed the decision to move across the Bay Bridge to be close to Alex’s doctors, but wanted to remain here. They credit Alex’s school (Most Blessed Sacrament) with amazing support, as well as the support of this community.
“You know, I worried in the car that day if we would be treated differently, and I am just so blown away by this entire community,” said Wood. “It is challenging because we have to travel a lot for his doctor’s appointments but I don’t want to leave here because everyone has just been so great and supportive. I never realized how nice people in this world can be.”
A New Year
Alex celebrated his 5th birthday on Wednesday, perhaps ironically, on the last day of the month designated National Childhood Cancer Awareness Month.
The family is on a two-month hiatus from doctor’s visits, and Amy says things feel the most like they did prior to May 21 first thing in the morning.
“He’ll watch his cartoons, and we’ll have breakfast, and it’s just the time of the day Alex is the most like he was before all of this happened,” said Wood. “We still love our mornings.”
Amy says what her family has been through and what she has seen other families struggle with at Hopkins at Kennedy Krieger has been life-changing, and she hopes to develop the app she and her husband created to help other families and become an advocate for spreading awareness for childhood cancer.
“The things I used to worry and stress about even the week before May 21 is so vastly different to what I worry about now,” said Wood. “Now, I realize most of that doesn’t matter one bit. I think at the end of the day we were lucky. It’s a rare tumor and we got it early.”
The Better Side Of Bad
Amy says if not for Alex’s teacher noticing his wobbly walk or his pediatrician abruptly sending them to Hopkins, the tumor would’ve likely claimed Alex’s sight within 30 days, or perhaps worse.
Looking back, the Wood’s, who are very spiritual, say they don’t understand why this was the plan God laid out for them, but they realize they are on what they call, “the better side of bad.”
Shawn and Amy and Alex Wood have been through so much since May 21, and there is certainly a long journey ahead. They have survived survival, and are learning a new sense of normal. Their existence is now very much day by day. They don’t know if they will end up in the ER, and Amy longs for the day where she’ll wake up and not think about hospitals, or Craniopharyngioma or mentally troubleshoot things that could happen with Alex over the course of a day.
Yet, for now, the Wood family is celebrating their 5-year-old’s birthday week, and as their little boy blew out his candles in front of friends and family this week, Shawn and Amy Wood likely made a few wishes of their own: for continued health, happiness and much longer mornings.
Readers are welcome to follow Alex’s progress at caringbridge.org/visit/ralexwood