Here is William's story, told by his mom Kristie.
After seemingly uncomfortable, with a lot of GI symptoms, odd swelling issues and a dramatic change in his demeanor (including constant night wakings and limited naps) since 3 months old, we were told William had food allergies around 5 months old. We were seeing a pediatric gastroenterologist who was confident of the food allergy theory, despite never doing any blood work. He had blood in his stool for over 2 months. I was nursing at the time and ended up omitting all sort of foods, since all formulas we were prescribed only made him worse.
Finally, I made an appointment with an allergist (despite my pediatrician saying it was not appropriate due to his age - the gastro would care for allergies at that age). This allergist entered the room, saw my puffy baby and was very alarmed. She called the pediatrician immediately and insisted on ordering a bunch of blood work and some x-rays, thinking it was cystic fibrosis. The next day the pediatrician called saying he needed to see William immediately, because his blood work showed dangerously low levels of blood proteins. He admitted us to the hospital, excepting the need for a blood transfusion.
We entered the hospital on a Friday afternoon thinking William's food allergies would be pinpointed once and for all. A new pediatric gastro saw him at the hospital who, for the first time, thought William was extremely swollen with edema (we had always been told he was just a big baby - nearly 24 pounds at 6 months). After thinking his liver was enlarged, he ordered an ultrasound....which found a 10cm "mass." The next day, the oncologist at our door was calling it a tumor and a few hours later after a CT, it was cancer. He was diagnosed with stage 3-Intermediate NB. The local docs said it was inoperable and would require 8 rounds of chemo and then they would evaluate to see if it could be removed.
After 2 weeks hospitalized, William and I walked out the hospital here to get in the car and drive to Memorial Sloan-Kettering for a second opinion. We saw Dr. Modak and Dr. LaQuaglia. They agreed it was inoperable because it was around every vital blood supply and encasing so much, especially since he was so small and the tumor was so big. They said we needed to start with 2 rounds of chemo and return for scans. We followed and in February, Dr. LaQuaglia said he was concerned the chemo created a lot of inflammation and calcification, and so it was time to remove it. Feb 19th William had his resection surgery, 9 hours with Dr. L. He removed all the tumor, but unfortunately, that was just the beginning of many, many serious complications. We expected 2-3 days in PICU at Presbyterian and another week at Sloan, but William ended up staying in the PICU for 12 days, and another 3 weeks at Sloan. He ended up having a splenic infarction, but that was not discovered until nearly 2 weeks after surgery. That created a number of infection risks and made his platelets go to over 1.7 million - very dangerous levels. He had a clot to his good kidney, one in his arm, and one in his groin. He had a lot of pulmonary complications and all sort of GI problems and was put on TPN (total parent nutrition-William receives all nutrition in liquid form through his central line) a week after surgery, when he was still intubated. We ended up fighting to get to leave Sloan, since they did not have pediatric specialists to help William (since they are a cancer center with a relatively small peds unit ...all the specialist only work with adults).
Anyway, needless to say, the NB has taken a back burner with all the other problems we are dealing with. Odd to think, huh? William vomits on a regular basis with a very traumatic, severe gagging. It's a struggle everyday to get his meds in. His entire GI system is a mess. He's had all sorts of scopes and procedures to try to help the situation and has had some pretty serious problems handling anesthesia through all the procedures since his resection. The doctors here feel as though the hundreds of surgical clips that were put in his abdomen as part of the resection is causing a lot of complications with scar tissue that is constricting his stomach and intestines.
William will head to Sloan later this month for scans and then will return home for surgery to hopefully place a feeding tube allowing him to be fed directly into his intestines. When we met William last week, I was instantly blown away by how wonderfully functional he was. That might sound terrible...but considering he has never taken food by mouth and is connected to IVs for several hours a day, I was expecting a pretty passive and sick looking boy. Imagine my surprise when I met a very happy, filled-out, and active little boy.
He is the adorable sweetie next to Allie. His big brother Nicholas (equally as sweet and adorable) is on the top step with the big smile! For part of our day he tottled around with a tiny backpack on that carried his bags of fluid that was connected to the central line in his chest. All the while he wandered through the museum exploring and having fun with all of the other kids. It brought me back to our days when Brady was unable to stand because of the tumor in his spine. I remember Matt and I carrying him around the same museum...I remember the feelings of wondering if he would ever be like the other kids. That feeling hurt, and it still hurts even though we are much further down the road.
The good news is that both of our boys have survived the cancer that at one point had invaded their bodies so aggressively. However both of our families know that the battle doesn't stop with No Evidence of Disease in William's case or just a tiny bit of stable tumor left in Brady's case. In both cases, our sons will deal with complications for some time to come, and always the chance of relapse.
When your child has cancer it is easy to think that it is all about you, you are in this fight alone, and that no one could have it as bad as you. Sadly, we have learned that there are so many children like Brady and that so many are in much worse of a situation than he ever was.
That is why we continue to do our small part to help raise awareness and funding. Please consider joining us on Monday September 6th from 10am to 8pm at our lemonade stand as part of Oakfield's Day in the Park Celebration. If you can't come, please consider making a donation by clicking on the Alex's Lemonade icon on the right.
Thank you, as always, for standing by us in our fight!
