Kids That Inspire Us
Grier 6/8/2004- 11/26/2013
In March 2007, I picked up Grier in the carpool line at his preschool,and he told me all about his day and how he raced his friends on the playground. A few days later, we were admitted to our local hospital for tests because Grier had a tummy ache that kept reoccurring and a limp that occurred overnight. We were later told after a lot of tests that Grier had a large tumor growing in his abdomen and our long journey began. Grier was diagnosed with stage 4 Neuroblastoma (cancer of the nerve cell) on March 27, 2007. He underwent intensive treatment including 7 rounds of high dose chemotherapy, blood and platelet transfusions (too many to count), numerous surgeries—including a 10 hour surgery completed in October 2007 to remove the tumor, radiation, and a clinical trial called 3F8 at Memorial Sloan-Kettering in NYC. Grier had many relapses during his 6-½ year battle. We traveled and consulted with experts in NYC and Philly- he enrolled in many trials but this disease outsmarted his medical team and us. In November 2013, the options for treatment were gone and Neuroblastoma was taking over. At the age of 9, Grier died from this disease on November 26, 2013. His brave fight inspired many to live each day to the fullest and to make pediatric cancer funding more of a priority.
We need to make sure pediatric cancer is funded so better treatments can be found as well as early detection and prevention. Cookies for Kids’ Cancer is a great way to encourage people to make a difference by doing something so easy like holding a bake sale or any event that raises money for this under funded disease. I truly believe if it takes a village to raise a child than it will also take a village to find a CURE for pediatric cancer.
Liam 5/13/04- 1/24/10
Monday, February 26th, 2007, started out as a day just like any other day. It wound up being the day my life, my husband’s life, my daughter’s life and the life of everyone who loved us and our precious son Liam would be forever changed.
That morning I took a shower, got dressed, wore the earrings Liam picked out for me to wear because they were “really pretty.” I took Liam to the preschool he had just started a few weeks earlier, brought him home for lunch and took him to the pediatrician in the afternoon.
Our appointment was to discuss some nebulous symptoms that alone were nothing but grouped together amounted, in my “mommy mind”, to something. My picky eater became a pickier eater. My good napper changed his nap schedule and became an even better napper. His nagging cold just didn’t seem to ever fully go away.
Our trusted pediatrician examined Liam then asked me to meet him in his office. I was concerned but not alarmed. He wrote orders for a chest X ray, CBC (complete blood count) and abdominal ultrasound. I felt a sense of relief that he was taking my concerns seriously. I asked him how quickly I should have the tests done. He said soon but it wasn’t something I needed to do today. It was 4 p.m.
I drove straight to the closest hospital, which happened to be the one where Liam was born. The clerk told me the blood test and X ray could be done that day, but the ultrasound would have to wait another day until an appointment was scheduled. I looked straight into the clerk’s eyes and very quietly said, “I really need this to happen today. I don’t care how long we have to wait. We’re not leaving without these tests being done.” She looked deep into my eyes and into my soul and told me she would do everything she could to make it happen. We waited hours.
The last test to be done was the ultrasound. I had been through two pregnancies and countless ultrasounds, so I was familiar with measurements being taken but I didn’t like the way the technician was taking too many measurements of my son’s abdomen. I knew something was wrong. The technician told me she was going to have the doctor read the ultrasound that night instead of making me wait until the next day. I thanked her and went to the waiting room.
A man came out who identified himself as a doctor and asked me to come with him. My jelly legs carried me into a room that reminded me of what an air traffic control room must look like – lots of monitors, dim lights, and quiet. He was the only person in the dark room at that time of night. I was pushing Liam who was resting in his stroller. The doctor led me to a corner room and handed me a phone. On the other end of the line was our pediatrician, the man I had come to love and trust with my children’s health. He told me the ultrasound found a large mass in my son’s abdomen. It couldn’t be identified but Liam was being admitted for observation that night, an oncologist had already been called, and a CT scan was scheduled for the next day.
I wanted to collapse but I couldn’t because I was with Liam. I wanted to cry but I couldn’t because I was in too much shock. I wanted to throw up but I couldn’t because I hadn’t eaten all day. I wanted to take back those words. I wanted my mommy instincts to be wrong. I wanted to reverse the hands of time but I knew that was impossible.
After another very long wait in a packed emergency room, we finally arrived in what would be the first of many hospital rooms we would occupy. That night a very scared little boy was strapped down to a table to insert a needle in his arm to run fluids in him. The next day after a CT scan, I was told my 33-month-old son had stage IV cancer and needed an immediate operation. By that night we were transported by ambulance to Memorial Sloan-Kettering Cancer Center and started the odyssey of reclaiming our sweet son from the cancer cells that were trying to overtake his body.
On this odyssey, we have learned that pediatric cancer robs families of more children than any other disease. We learned about the vast disparity between funding for pediatric cancer and other cancers. We learned of the lack of interest on the part of pharmaceutical companies to invest research and development dollars in treatments and cures. And after we learned all of these shocking facts, we decided to do something about it.
Together we can make a difference. Together we can improve children’s odds, children like my son who I love more than anything.
Nolan was born March 5th, 2010. He had never missed a day of daycare from any illness and was a happy thriving little baby boy. When we took him for his 6 month appointment, our Pediatrician, Dr. Goins, felt what she believed to be a hernia. We were referred to a Pediatric Urologist, Dr. Perez, for a look to see what he thought.
I remember reading hernia’s are common in babies and they are easily corrected by a simple surgery, never seemed like anything to be too concerned over. We were in the Urologist office by the end of the same week as Nolan’s 6 month appointment. When the Urologist felt the hernia, he described it as a hard mass and had a concerned look on his face. He gave us all the what ifs and cancer was one of the what ifs. I’m not sure about Keith, but I couldn’t bring myself to believe our baby could have cancer and this was probably just the Doctor being cautious and covering all bases to let us know what the worst case scenario would be. Nolan was scheduled for surgery the following Tuesday, one week after his 6 month appointment. Nolan was a trooper the morning of the Surgery, we were nervous. He was taken back to Surgery right on time, by the time we packed up our stuff and headed out to the waiting area we received a call from the OR. The tumor was completely wrapped around his testicle and there was no way to save it. Tumor…tumor?? I tried to reassure Keith, maybe tumor was just a term being used and we didn’t know what it really was yet. Everyone associates tumors with cancer. The Nurse came right out and we signed the consent to have his testicle removed. The actual surgery was over with really quickly and Dr. Perez reassured us we made the correct decision regarding the removal. He had sent the tumor to pathology for a quick test in order for us to have an answer whether it was malignant or benign. He would have the answer before we left the recovery room. We went back to see Nolan, while we were packing up we had our answer…cancer. There was no way for them to know what type yet and pathology would need a few days to determine. We were at Blume Pediatric Hematology and Oncology by the end of the same week.
Around Octobor 1st, Nolan was diagnosed with Stage IV Neuroblastoma. He had another tumor on his right adrenal gland extending into the other half of his little body. He required four rounds of chemo to shrink the tumor enough for a tumor resection surgery at the end of chemo.
Through all the chemo and Doctor’s visits, Nolan began walking at only 9 ½ months of age and in the middle of chemo! He was a trooper through the entire 5 months.
Nolan completed chemo the week of Christmas 2010 and went in for a tumor resection in Jan 2011. Not all of the Tumor was able to be removed during the Surgery. Scans showed active tumor still remained after surgery, we had to wait for the biopsy of the tumor that had been removed. We didn’t have to wait long to hear the news, the remaining tumor was maturing and dying off on its own, no more chemo!
We celebrated Nolan’s 1st birthday in March, during his May scans (three months after treatment) the results showed Nolan was CANCER FREE! He remains Cancer free to this day and he enjoys playing outside, something he was not able to do too much of during chemo. He is a big brother now to baby Ryan born November 18, 2011!
Please support Cookies for Kids’ Cancer because C should stand for cookies instead of Cancer!