Who Is #8?

Nicholas David Wihlborg was born on August 8th 2002, a hot, sunny, beautiful day. His arrival was originally
supposed to be a scheduled C-section for the 9th, but we would learn that he wanted to be born on his own terms a day early. From the beginning, Lori and I realized he was simply a happy kid. We didn't hear him cry for a couple days - he just seemed to be content eating and sleeping. Nick was originally scheduled for a C-section because he was in the Frank breech position. As a result, he had shallow hip sockets and had to be fitted with a harness to help get his sockets to deepen. This meant lots of trips to the orthopedist and many x-rays. After six months, he was out of the harness and moving around. Even while he was in his harness it didn't seem to bother him. He walked by the age of 11 months and talked shortly thereafter. Once he started talking, we realized how bright a kid he was. At the age of 2½, we were able to hold a full conversation with him. Nick was a little man and could hold his own amongst the adults in the family.

Nick loved to learn, and was reading before he started kindergarten. And we quickly learned how competitive he was. In first grade, he was kicked out of a checkers game because he refused to lose. He was a strong willed kid, and this certainly set the tone for his future. Around this time, he started to play t-ball and excelled at it. He tried many other sports as well: soccer, baseball, football, he learned how to ice skate and even tried rugby. He always came back to baseball though, he was a natural and he loved it. I didn't have to teach him how to throw - he just seemed to know. We watched a lot of Yankee games together and he learned how to play the game by watching and asking a lot of questions. That's pretty much how he learned hockey too, which turned out to be his favorite sport to watch. Overall, he loved pretty much anything to do with sports and being outside with his friends.  
 

Nick excelled at school and made friends easily. He would stand up to anybody, was very honest and believed strongly in right versus wrong. He was the type of kid that could fit in with any group of kids and was often the bridge between them all. Nick did not discriminate or care if you couldn't play a sport or know how to solve a math problem. Instead, he would take the time to help you. Nick's teachers quickly learned that they needed to challenge him with a little extra work and they enjoyed having him in the classroom because of his mature, dry sense of humor. He would get jokes that the other kids just didn't get.

Nick enjoyed going on vacations in the summer with our family. Krista, his younger sister by three years, was his best vacation buddy. Their big brother/little sister relationship was typical and they would always enjoy vacations and were sometimes even close friends! Nick's favorite vacation spots were Cape May and the Bahamas. Looking back at our vacations, I realize how truly precious those times were.

Nick was generally a healthy kid. He got a cold every once in a while, but nothing major. He was also a tough kid for his size. He never was one to complain or stay down for long when he got a bump or a bruise. It was the second week in March 2013, his 5th grade year, that we noticed some red marks on his legs. At first, we thought it was a rash as we had just started indoor baseball practice and he was wearing dirty catchers gear. Then the bruising started, and the total lack of energy. We scheduled an appointment with his doctor to have him checked out. The night before I took him to the doctor, he couldn't run sprints at baseball practice and was crying that he was out of breath. That's when we knew something was definitely up, but again figured it was a cold or something.

I took him to our pediatrician the next day and after a 30 second examination, was told to get him in for blood work. The next day was Good Friday and the kids were off from school. It was a chilly morning and I took Nick and Krista to breakfast at a local diner. While there, I received a frantic call from Lori telling me I need to get him to Morristown Memorial Hospital - specifically the Valerie Center. I rushed to pick her up from work and we drove to the hospital. I dropped the two of them off out front and went to park the car. By the time I made it upstairs, Nick already had an IV and was being prepped for more tests. This is when we met Dr. Halpern. His name tag said "Hematology Oncology", and the magnitude of our new reality set in.

Dr. Halpern told us that Nick had leukemia, and that we would be running around doing a lot of testing and procedures that day. It wasn't until the evening that we found out the specific type of leukemia he had. It was called "T-Cell Acute Lymphoblastic Leukemia" or T-Cell ALL. The day was a complete blur. But as always, Nick was a trooper through the whole thing. He never complained and just took it all in stride. We knew that day that life had changed. As a family, we committed to fight and knew Nick had it in him to face this head on.

We met a lot of people that day, but at the moment I couldn't tell you who. We spent the next week in the hospital starting treatments, IVs, spinal taps... We learned a lot of new terms, Bone Marrow Aspiration, MRD test, Prednisone, Methotrexate, Vincristine, etc. Terms that I did not want to ever know but now needed to. Through most of that week, Lori and I cried a lot. And Nick, well he was just Nick, it didn't seem to bother him. Here was a 10½ year old kid telling us everything was going to be all right. That's when we learned how truly Fearless he was. He was facing this battle with a determination and resolve that was nothing short of amazing.

When we got home from his hospital stay, he and I had a long conversation and he thanked me and my wife for helping him. He actually thanked us. Again, showing us what kind of kid he was. It took longer than the doctors wanted to get him into remission but he finally accomplished on July 23rd, 2013. We were ecstatic to say the least. Once in remission, our routine changed. Every Monday, we would go for bloodwork and/or treatment. Nick really didn't have any side effects, just some tiredness or roid rage from the steroids.

He finished his 5th grade at home with the help of a tutor and again made the honor roll. He started his 6th grade year being home schooled and was able to talk to his friends via text, or X-box live. During one of his x-box live sessions, I actually heard him say to a friend "its only Leukemia, I'll be fine". He was confident, that was for sure. We made it all the way to December and he was told it was time to start the maintenance part of his treatment. There are many different phases of his scheduled 3½ year treatment plan, and maintenance was the phase we were all praying for - the big one, the goal and he made it. This meant he could go back to school and there would be less clinic visits. He was well on his way to beating this beast.

In the spring of 2014, Nick started playing baseball, the game he loved. He started off a little slow but quickly got back to his normal abilities. He was hitting third in the line-up, pitching and doing everything like he used to - except run, but we figured that would come in time. Nick finished out the school year and made the honor roll again. All was right in the world, Lori and I still worried, but as parents of an oncology kid, that was our new norm.

In August 2014, the four of us went on Nick's Make-A-Wish trip to Disney. We were excited to go as a family, as it marked another milestone for us. But two days into the trip, Nick started running a fever and we were told it was probably a virus. We finished out the trip and came back home. In the back of our minds we were praying it was just that a virus and had scheduled time with his doctors. On a Tuesday night at fall ball baseball practice, Nick did something he had only done once before. He walked out of a practice, just like he did when he was first diagnosed. It was not a good sign.

The next day, it was confirmed that Nick had relapsed and would need a bone marrow transplant. We started chemotherapy again, followed by another hospital stay. The doctors would use all of the weapons in their arsenal to knock the Leukemia down, but not out. This god awful disease just wanted to hang around. We tried new drugs, heavier doses and still it would not leave his body. Nick kept a positive attitude and he fought like hell. He never once gave up or said he wasn't going to beat this. Again, he showed Lori and I what a strong kid he was.

On November 12th, 2014, Lori and I were called into an exam room by Dr. Halpern. This man, who had fought so hard to cure our son, told us that they have run out of treatment options. We were devastated. We were told to take him home and begin hospice care. Here were Lori and I - the parents of a 12 year old boy - being told there was nothing more that medical science could do to save our son from this horrible disease. Lori and I had reached out to experts in the United States and around the world - no one could come up with a solution or different regiment of drugs. We had reached a point from which there was no return. And we took our son home on that Thursday.

We decided it was in Nick's best interest to not tell him what was going on. And to this day, we have difficulty in wondering if we did the right thing. But, how do you let a 12 year old boy know he won't make it to 13 and expect him to function during the time he had left. We spent that day at home with both sets of grandparents, his sister and some close friends. Nick was happy to be home in his familiar surroundings. Over the next few days, he cooked, played, went out to dinner. He was Nick, and it was bittersweet.

The following Tuesday, we noticed that Nick just wanted to sleep all day. His hospice nurse insisted on coming over for a wellness check. It was then that she told us that she didn't expect him to make it past the next two days. His time was upon us and we need to make sure he was surrounded by love. We all slept in his room that night. It was a cold windy night, exactly the opposite of the day he was born. On November 19th, 2014 at around 4am, Nick passed from his mother's arms into the arms of God.

This day will forever be ingrained in our brains. There is not a day, a second, that goes by that we do not think about him. He is no longer physically here with us, but he is forever with us and all his family and friends who love him. Lori and I talk and sometimes second guess all decisions we made along the way and then we realize there was nothing more we could have done. We just hope Nick knew we loved him, and we tried all we could. Because we know Nick did all he could do as well. This was not a battle that was lost due to a lack of will to fight, it was a battle that was lost due to a lack of weapons.

Along this almost two year journey, our family was thrown into the world of childhood cancer. It is a world that NO ONE willingly enters. We went from wide-eyed, scared "Day One" parents to veterans of this small world. We were asked to talk to other parents and have become close with a few, knowing we are all balancing on a knife's edge. At any time, our worst nightmare could come true. Sadly, we know too many other families that have lost their children to this terrible disease. Every child is one child too many.

It is in memory of Molly, and Margaret, and Alex, and Nick that we are dedicating our time to support and help others that are still in the fight.

This is the reason The Nicholas Wihlborg Foundation was created. To raise awareness and support for so many kids just like Nick. Please join us in this battle. Because no child can do this alone!