In December 2015, our son, William, started complaining of leg/knee pain. William had always been an active boy, so we figured that he must have just hurt himself doing something physical. After a few days of the pain continuing, my husband thought that maybe it was “growing pains.” We continued to keep an eye on it but weren’t too concerned at this point. By the end of the week, I called our pediatrician for an appointment. William had an exam and bloodwork done. He was also given antibiotics. I got a phone call the next day and was told that William had a viral infection and that the muscle pain was secondary to the infection. If he wasn’t improving within two days, I was to call back. William hadn’t improved, so I called the pediatrician back. At this point, I was told that they wanted to run bloodwork on William again that day and also wanted him seen by an orthopedist. We stopped to have blood drawn on our way to the orthopedic office later that day. William had been in decent spirits up to this point, so, although I was worried, I wasn’t overly concerned. While the orthopedic doctor was reviewing William’s bloodwork, he noticed something that didn’t sit well with him. I suddenly realized that this was more than a simple viral infection. The orthopedist called to see if the results were in yet from the bloodwork that was run before we came to his office. It was, and the doctor became even more concerned. He actually called the pediatrician while we were there. I left the office feeling afraid. I spoke with the pediatrician within the hour myself. He told me that he was scheduling an appointment for William with a hematologist from Penn State Hershey Children’s Hospital. Honestly, this is when it became real for me. When you are being sent to Hershey, you know it is not something to be taken lightly. We were to go to Hershey first thing Wednesday morning. I was also to call the pediatrician back if William got worse prior to that appointment.
William did go to school on Tuesday (they were having their Christmas meal at school that day, and he didn’t want to miss that). I got a call from William’s teacher by 10:00 a.m., and she told me that William fell asleep on the floor of his classroom. I went in and picked him up from school and brought him home. He was very lethargic at this point, so I called the pediatrician to let them know that William’s symptoms had changed. The nurse who I spoke to was going to relay my message to the pediatrician and get back to me. She called me back rather quickly and asked me to take William’s temperature. When she said that she was told to wait on the phone while I took it, I became more and more afraid. I mean, when a nurse has been instructed to wait on the phone with you while you take your child’s temperature, you know that it’s not good. When I told her that he had a fever, she told me that I was to take him to the emergency department at Hershey right away. Our children have all had fevers before. We were never the type of parents who “freaked out” when our kids were sick. Kids get sick. But this, this freaked me out. We rushed William to Hershey (which is about an hour’s drive for us). My mom and grandmother met us there. We waited for over four hours just to be taken back to a room. To have a child that is not feeling well, is cold, tired, scared, and now stuck in a hallway waiting to be put into a room in the emergency department . . . I can’t begin to describe how that felt. My husband eventually left to go home because he had to work in the morning. I finally convinced my mom and grandma to go home as well because things were definitely dragging out for hours that night. Eventually, the next morning, the hospital admitted William to the pediatric hematology/oncology floor. I honestly don’t remember much of this time as it all happened so quickly, and I was going off of about an hour’s worth of sleep. I do, however, remember being taken into a small conference room where I was told that William had leukemia. Wait, what!? No, I couldn’t have heard that correctly. Cancer? I was being told that my son, my perfect, happy, active, always healthy boy, had cancer. I couldn’t process that. I was alone. My husband was at work, my family was at home, and our girls were in school. After I had a few minutes to wrap my head around everything, I simply asked, “How do we fight this?”
William was started on the standard protocol for acute lymphoblastic leukemia (ALL). Most people were happy to tell us that ALL was the easiest of cancers to treat. I started to think that we didn’t have much to worry about. A little bit of chemo, some hospital stays, some not-so-great days, and our son would beat this cancer like no other! It was after a couple of weeks that we discovered that William had a rare subtype of ALL. He was hypodiploid. I made the mistake of looking this up as I didn’t quite understand what we were dealing with when I left the meeting with the doctors. As a general rule, I had already sworn to NOT look anything up online. I knew that I would be met with a lot of information that would bring me down. I couldn’t allow that. I had to remain strong for my son. I had to have nothing but hope. One of the very first things that I learned on this brilliant internet search of mine was that instead of the almost 90% chance of survival that William had, his chances were now reduced to about 35%. How does one wrap their head around that?
After some discussion, the doctors felt that a bone marrow transplant would be the best route for William to take now versus the standard chemo protocol. The girls were tested, and his one sister was a 10/10 donor match. So, on April 29, 2016, William had his bone marrow transplant. Everything went well considering. Even William’s doctors were surprised at how well William was doing. William was bound and determined to get out of the hospital. He did everything that was asked of him and then some. He had even requested to have a stationary exercise bike brought into his hospital room so that he could build his strength up and get out early. When we did get discharged (early) from the hospital, we had to go into a townhouse temporarily that was within a few miles of the hospital. We never spent one day just sitting around. William and I would drive around (within our allowable 15-mile radius) to discover anything and everything. We would stop at ponds to fish (William was a very gifted fisherman), go to the arcade, go to Bass Pro, anything just to keep William active.
Weeks went by, and we finally got to go home. We still had appointments at Hershey several times a week, but life was good! On December 15, 2016, exactly one year to the day of William’s original diagnosis, he was considered to be in remission! Life was beyond good at this point! We all felt a sense of relief and started getting our lives back in order. We started PLANNING things! If you have never had a chronically ill family member or friend, you cannot understand how something so simple as planning something for the following week becomes an impossible task. We were going to Hershey every three weeks for a standard checkup, but aside from that, you would never even know that William had been sick. He finally even got to start ice skating lessons so that he could fulfill one of his dreams and play ice hockey!
Until January 23, 2017, when my world came crashing down for the first time. I will never forget this day. I was getting impatient because we had been waiting to see the doctor for over an hour. Normally I was not the type to get too upset over this because I always looked at it as, on some days, that could be my son who is sick and holding up all of the appointments after us. But this day was special. William was to meet the Philadelphia Flyers. He was a huge hockey fan, and the Flyers were his favorite team. I was so afraid that we would get to Philadelphia late and miss the opportunity for William to meet the team. That was my main focus. Get William to Philadelphia. And then everything turned upside down. I was told in the hallway, as I was getting William from the playroom, that he had relapsed. His cancer was back. Some people think that being told that your child has cancer is one of the worst things that they will ever hear. I can tell you that, for me, hearing that my son’s cancer had returned was 100 times more difficult. All of the air had been sucked out of my lungs. My knees buckled. I was led into a room to sit down. I couldn’t talk, I couldn’t speak, my hands would not stop trembling. This couldn’t be happening. My son, the one who had done beyond well with his transplant and kicked cancer to the curb, could not be sick again. But he was. And I knew that the fact that it came back so quickly was not a good sign at all. My world came crashing down.
We were told rather quickly (within a week) that the doctors felt that William’s best option at this point was a clinical trial at CHOP called Car T-cell therapy. Hershey submitted the proper paperwork. We were notified that William was a candidate and had been accepted into the trial. The next step would be more chemo while we waited for CHOP to schedule a time for the collection of William’s T-cells. We went in March to have his T-cells collected and were told that we would have a four to six-month wait until the cells could be re-engineered and infused back into William’s body. Although we weren’t thrilled with the wait, we understood, until we found out that the chemo wasn’t working very well. It seems that William’s cancer may have started to become resilient to the chemo. Due to new lab results, William was bumped up the list at CHOP for the infusion. Instead of the original four to six-month wait period, we were to be at CHOP in less than a month. This was a huge step! We had remained beyond hopeful! William was such a fighter in a humble way. He was quiet and shy and had a smile that made your heart melt. Even on his worst days, he used his manners and was polite. He never complained. He never gave the nurses a hard time. He went fishing any time he had the chance, even when he didn’t feel well.
Our journey at CHOP began fairly uneventfully. The first week of conditioning chemo went well considering. We knew that William would be admitted to the hospital at some point after infusion; we just didn’t know when. William started with a fever less than four hours later, and by the time we got him to the emergency department at CHOP, his fever had gotten as high as 107.8 degrees. I honestly didn’t know that someone could have a fever that high and still be okay. They finally did get his fever down, but it was a scary experience for me. We were warned about many things, and we prepared ourselves as much as possible, but there is no true way to prepare yourself for all of the things that your child has to go through while they are battling cancer. William spent several days in the PICU, and we thought he was finally coming out the other side. We were so hopeful that the CAR T-cell therapy was working. After seven days in the hospital, William was discharged. He was doing fairly well, fishing any chance that he got, and just enjoying being out of the hospital. But in just nine short days, William started to not feel well again. I was at home with our girls at this point, as my husband and I would take turns staying with William. We were video chatting, and I asked why William was covered up and just kind of lying around. I asked my husband to take William’s temperature, and sadly, it was 103.3 degrees. My husband rushed William back to the emergency department at CHOP. Another hospital stay. His fever stayed for quite a while this time, and he also was plagued with headaches. After five days, he started to feel better. He was scheduled to have a lumbar puncture that day so the doctors could see what his counts looked like. William handled the procedure well, so after William woke up, my husband went home to be with our girls, and I was alone with William. It wasn’t even three hours after my husband left Philadelphia that William started showing symptoms of forgetfulness. At first, it was something small, he couldn’t quite get his password typed in right onto his iPad. I called the nurse in and told her what was happening, and she said it was most likely from the anesthesia that he had earlier that day for the lumbar puncture. I kept a very close eye on William because I knew that this was not normal for him hours after anesthesia. William started showing more symptoms, and I finally demanded that a doctor come in and examine William. Although he (barely) passed the doctor’s testing, she said that because I was concerned, she was concerned. She would come back in an hour to check on William. When she came back, he was worse.
Little did I know just how bad it would get. By the next hour, William couldn’t see and was beginning to not be able to communicate. Less than an hour after that, the William that I knew was gone. He could not communicate at all, he couldn’t speak, couldn’t write, and you could tell that he was looking right through you. His mind was gone. The only thing that William could do at this point was scream, moan, and flail around. To see your child like this, I cannot even begin to describe the terror that I felt. What was worse was that the doctors had no idea why this was happening or what to do for him. They tried to do an MRI later that night, but William was just too uncooperative. Our dear, sweet boy who always used his manners with the nurses, who never once complained even when he was in pain, was uncooperative. Every now and again, he would look at me, and I could tell that he actually saw me. I saw the fear in his eyes. He was trapped in a body that was betraying him. And I could do nothing. We were up that entire night. I tried to keep William calm the best that I could. He didn’t understand why he was being poked and prodded and listened to and examined. Every time he was touched, he would respond by flailing and screaming. Eventually, by early the next morning, the doctors wanted to intubate William and do another lumbar puncture. I had started to question if the anesthesia had been the culprit from the day before, so the thought of William having anesthesia so soon, or at all, absolutely terrified me. But I also knew that we needed to do everything possible to figure out what was going on with William’s body. William stayed intubated for hours that day. Oddly enough, when he was taken off the sedation and woke up, he was back to his normal self. He had absolutely no memories of the last 26 hours. For that, I am grateful. As a parent who had to witness this happening to her child, I can tell you that this is something that I will never forget. I can still hear his screams sometimes when I close my eyes. Once again, William pulled through. He beat the odds. He was getting better every day. Unfortunately, we learned that William was not 100% cancer-free as we had hoped. He still had a small amount of cancer in his body. The doctors thought that William had some cells that were CD19-negative that were not previously detected. The CAR T-cell therapy had not rendered William cancer-free as it had done for so many other children. That same day, William was discharged, 20 days after being admitted. The plan was for us to go back to our home hospital, and William would get an experimental drug that would hopefully kill what little cancer had remained. This drug had shown great success in other cases, so, yet again, we were extremely hopeful. He may not be going home in remission, but we had every reason to be hopeful. The drug would take a little more than a week to get as the hospital had to apply for it, but we had no reason to be fearful.
Unfortunately, William started showing signs of an infection before the drug got to the hospital. If a child has an infection, the drug is automatically a no-go. William’s last shot at beating this ugly disease, by a cruel twist of fate, was being taken away before it even made it to him. It was determined that the leukemia had now spread to William’s spinal fluid. The drug that William was to receive does not cross the blood/brain barrier, so the drug company would not approve it for use in William. William struggled with debilitating headaches, and eventually, his left eye swelled to the point that he no longer had use of it. Our home hospital told us that there was nothing more they could do for William, nothing left to be done for our child. Our beloved son was out of options. My husband and I would not accept this. There had to be something somewhere!! We could not accept that our son was not going to make it. We started researching and doing everything that we could. We had multiple friends also doing the same. In the meantime, William was to start radiation on his brain to hopefully help with his eye. Before that could happen, William started with another fever. We took him to the hospital, and once again he was rushed to the PICU. We were told that William would most likely not make it through the night. He did. Not only did he make it through that night, but he improved. After eight days, he was discharged and got to come home. The next evening, he started with a slight fever again, but we filled him up with fluids, thinking that he was maybe just dehydrated. That kept his fever at bay until the next morning. He had a fever again the next morning and was taken to our home hospital yet again. This time, William would never return home. He had an infection again, and his poor body was just too tired and weak to fight it off a second time in a two-week time frame.
We lost our sweet William on July 15, 2017, just four days shy of his 13th birthday. Words will never be able to describe what this feels like. Our fighter every step of the way was gone. He fought bravely right up until literally the very last seconds of his life. I had to tell him that it was okay to stop fighting; it was okay to let go. It was the hardest thing that I will ever have to do, to tell my son that it is okay for him to leave this earth, to be holding him as he takes his final breath, to continue on without him.
The Leukemia & Lymphoma Society (LLS) was a support system that we didn't know we would need. Without funding from LLS, the clinical trial that Willam entered, which gave us a few more months with him, wouldn't have been possible. Today, LLS allows us to continue sharing our sweet Willaim through Student Visionaries of the Year (SVOY), Volunteer of the Year (VOY), Light The Night (LTN), Team In Training (TNT), and especially through my work as an ambassador for the Dare to Dream Project.
