Our story starts over the New Year holiday in January, 2013. At this time my husband Joey and I were raising 5 beautiful healthy and very active children ranging in ages 4-20. We had decided to stay with the grandparents for the long weekend, for the sole purpose of teaching my then seven year old son Joey, to ride a two-wheeled bike. Of course he took a few spills, but nothing out of the ordinary. That night, I noticed him watching TV with one eye closed and when I asked him about it, he said it was because he saw two. Of course that did not sit well with me, but when we got home a day later it seemed to go away and instead, he was complaining of neck pain. At this point anxiety kicked in and I found a doctor that would see him on a Sunday. He did not like the neck pain, and had us evaluated by an ortho-spine specialist the next day, who also wasn’t too concerned, but said to come back in seven days and in an abundance of caution to go to the eye doctor.
The next day, my husband took him to the eye doc, who took one look at his dilated eyes and asked them to go straight to the ER of the local children’s hospital for a CT scan. My husband called me…and I knew it was something. It’s funny, you spend your life protecting your kids from predators, drunk drivers and bullies, but you are never prepared for the curveball thrown at you by an unexpected critical diagnosis. We sat around for what felt like hours trying to dismiss the worst possibilities, but then it came, and my curly blond haired, crystal blue eyed beautiful, smart, kind and loving boy, had a racquetball sized mass in the back of his brain, balancing on his brainstem. Before we knew it, numerous hospital staff was swarming around the hallways and it felt like I was spiraling slowly down a black hole, sick to my stomach and crying so hard that sound wouldn’t even come out. Even almost six years later, I can remember every detail of that moment as if I were still standing there.
Four days later, my son was rolled into surgery, anxious, but smiling, and five hours later he came out, and I can tell you that the child that went in was not the same child that came out. Some people would refer to it as vegetable-like state, but he was responsive so it wasn’t quite that. The best way to describe it was that he was like a wet noodle. He could not hold his own head or body weight, he could no longer walk or even use his legs for that matter, he had no use of his left arm, his beautiful blue eyes were completely misaligned to the point it really did not even look like him. The hardest thing to see was the 8-inch, stitched up wound along the back of his head. He was hooked up to so many monitors and wires you couldn’t even hug him, and even if you could he was so confused and uncomfortable that it really wouldn’t have been possible.
Despite his current state, we were thrilled to learn that the pediatric-neurosurgeon had removed the entire tumor and within two weeks the pathology was back and were told he had Medulloblastoma (muh-dul-o-blas-TOE-muh), an aggressive childhood brain cancer and because of this, he would need to start treatment 31 days post-surgery, and we were already 14 days in and just starting inpatient rehab. We chose St. Jude Children’s Hospital and had less than 24 hours to pack our things. Joey still couldn’t even sit and had to prop up pillows all around him for support. I closed my law firm, my husband took extended leave from Miami-Dade Police, I gave my house keys to the PTA and trusted them to figure out a plan for our dogs and house, and we moved our family to Memphis, TN. to begin nine months of grueling treatment. This was when I was told Joey was eligible for Make-A-Wish (MAW). I have to be honest, I was never involved in MAW prior to that time and when my social worker at the hospital was getting us set up she said “We need to talk about Make-A-Wish.” I got very upset because I thought MAW was only for terminal children. She explained the program to me, but I had no idea how powerful the gift of MAW would be, but had put it on hold to begin treatment.
Whether the critical illness is cancer, brittle bone disease, CF, heart disease or any of the many others that can affect these kids, they have to fight so unbelievably hard for their lives. For now, I’ll spare you some of the unpleasant details, but I think it’s important that you read what Joey endured in order to give you even just a glimpse of what some of these kids go through…In our case it’s the world of childhood cancer.
When we arrived in Memphis, he underwent surgery to place three screws in his skull and had nine tattoos embossed on his back, while he was awake. This was necessary to line up the radiation machine. He then had 31 radiation treatments to the brain and spine. When that was over, he had another surgical procedure to place a catheter into his groin area in order to undergo femoral apheresis, a procedure in which the blood is filtered, separated, and in his case, they needed to secure eight million stem cells for transplant. In order to stimulate and increase the number of stems cells, he underwent 30 days of very painful G-CSF shots, (monoclonal antibodies), in his arm. He then underwent a third surgical procedure to place another catheter into his vena cava for long-term drug therapy. He then underwent four inpatient rounds of four different types of high-dose chemotherapies, and because of this, received more than 29 blood and platelet transfusions, as well as numerous antibiotic infusions, four stem cell transplants, and took countless prescription meds (two shoe boxes filled with them) to manage the side effects.
And just like that, almost 10 months later we were back in Miami, when two lovely ladies named Elizabeth and Michele, our wish granters, came to the house to meet with Joey. While at St. Jude’s they brought the kids gifts which helped to make them comfortable. They talked with Joey and asked lots of questions, and he let us listen in, but not speak. They asked him that if he could wish for anything what it would be. I realized that this was the first time in 10 months that Joey was asked what he wanted. He didn’t even hesitate! He wanted to go on a Disney Cruise and his wish was granted. And remember, I mentioned earlier about the simple act of making the wish puts the control back in the hands of the child. For Joey, this was the moment that he took control and was able to move forward and not dwell on the past the 10 months of his life.
If you ask him about the cruise, he’ll tell you that he loved being with the whole family, since we had to leave the older kids with friends and relatives because they were in school during his time at St. Jude’s. The wish reminded us that we were a family before and we were still a family. It was also important to Joey that his then 4 year old sister enjoy the cruise as much as he did. He really wanted her to be able to see all the princesses. If you’re curious, Joey’s favorite part of the ship was the Aqueduct; a clear tube-water slide that goes around the ship and even out over the ocean. His second favorite was the free food, otherwise known as a buffet, and here’s just something about being eight and having unlimited access to macaroni and cheese!
From a parent’s perspective, MAW was amazing! Like Joey, finally being asked what he wanted. For us, it was just the opposite. It was the first time in nine months that there was no pressure on us to make a decision. No decisions about treatment, which car to sell, how much to sell the house for, leaving employment, what to do with the dog…MAW eliminated all decisions. They just told us when and where to be, and they even took care of the baggage and tips. After what we had been through, you cannot imagine the ease of a trip like this. This trip was a way to reflect, to celebrate, and to allow us to move forward and stay focused on what was possible instead of the dwelling on the fear that had been paralyzing us all this time. When we returned home from the cruise, we all started slowing living our lives again.
This is not my story, it is the story of my very close friend Joey, his wife Libby, and their son Joey, but the entire Giordano family as well. While this didn't happen directly to me or my family, it did affect all of us and show us what a great, great organization St. Jude Children's Hospital is, and for what they did for my dear friends, and the thousands that came before them, and no doubt the thousands of families that will follow.
Please, if you can, donate like we do to St. Jude's. You never know what your small donation may do for someone's family.
