Our Warriors - Our Heroes
June 23, 2017 was the last day of fourth grade for Samarra Amelia Pirrong, also known as Sammy. On June 25th she went to her favorite water park with her mom and little brother and sister. On June 26th she came to my house in northwest NJ for a BBQ and fishing. On June 27th she went to the doctor for stomach pain. And on June 28th she ended up in her local ER because she couldn’t stop vomiting. It was there and then that doctors told Sam’s parents that she had a large mass in her abdomen, specifically on her kidney.
On July 7th Sammy was diagnosed with Stage 4 Wilms Tumors, kidney cancer. In a one or two year old, this diagnosis would not have been as rare. But Sam has been an anomaly in all things concerning her diagnosis. Its rare for a ten-year old to be diagnosed with a Wilms Tumor. It’s even more rare for a child to have such adverse reactions to the chemotherapy treatments she started immediately after diagnosis. It's even more rare for the tumor to be left in the child, but Sam’s cancer cells had spread into her aorta and surgery was risky.
Finally, after 2 months of chemotherapy treatments that ultimately brought her to the ICU and to almost not making it three times, Sam’s expert team of doctors decided that it was more risky for the tumors to remain inside of her. On August 31st, Sammy had her tumors, and her right kidney, removed, in an unbelievably complex surgery that included rerouting some vessels to help reduce the risk of her cancer spreading further because of the operation. After the surgery and recovery came an intense round of chemo and radiation combined, targeting all the cancerous cells in her little body.
The results of everything once again led Sam to terrifying territory. To date, she has had approximately 30 blood transfusion, including one horrific week when there were 11. Sammy is currently undergoing a round of chemo; since her body can only tolerate the chemotherapy at 25%, this round will last a few months, four times longer than normal. The next steps will involve scans to see if and how well the chemotherapy took care of the remaining cancer, and then having her team of doctors will decide the next best steps for her in this journey.
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My daughter Rosalie was born on 10/17/17... after multiple miscarriages I gave up and thought I could never have a child. I finally got pregnant and remember always saying “I can’t get attached until she is here with me and I see she is okay”. I had a rough pregnancy so I stayed home for most of it. At 42 weeks which felt like forever I started having contractions.
Upon arrival to the hospital I could tell something was not right by the look on the doctors faces, they informed me I would need an emergency c section right now. They said Rosalie was showing signs of stress on the monitor. Frantically they were all yelling and trying to do my epidural telling me they might have to put me under... finally with my adrenaline through the roof they got her out. They showed her to me and the first thing I remember saying “what is that purple dot on her forehead” they assured me it was a birthmark... I wasn’t buying it, I had a feeling something was wrong. I was on so much pain medication I couldn’t hold Rosalie, I looked at her and then passed out.
When I woke up there were doctors standing around me and my daughter was in a clear box hooked up to all kinds of monitors. They said they were taking her to Morristown for a platelet transfusion; I had no clue what that was but I figured Morristown is a good hospital they will fix her up and send her back to me. The next day my fiancé and the doctors called me on speaker phone to tell me they’re almost positive my baby has leukemia. I screamed and screamed I thought my stitches would rip open but I didn’t care. I left the hospital with no healing time (and trust me I fought everyone in that place to leave).
When I got to the hospital and saw a poor newborn baby hooked up to wires even coming out of her belly button I was in disbelief. I felt like this was a nightmare maybe it was the drugs they put me on for my surgery. I then was met by a team of doctors telling me how rare this is and doing chemo therapy on a newborn baby is rarely done. I thought my daughter had no chance, I asked them what would happen if I just took her home... they told me she would have two months to live. That was when I realized the severity of the situation.
After two and a half weeks of hell my daughter went into something called “spontaneous remission” which is also very rare... her body was fighting cancer on its own, it was a miracle. She eventually was able to come home as the cancer was undetectable. They told me they were unsure when it would come back but they were sure it would. She could give us weeks or years. After being home for about 4 weeks I saw the purple spots returning on her body, my heart sank. The doctors told me not to worry, her blood work is still coming back normal. Of course I still worried. Two weeks later she must have had 50 of these purple spots (chloromas) and she started vomiting... that’s when I couldn’t take it anymore and took her to the emergency room.
December 17th was the night I took her to the emergency room and we haven’t left since then. They said it was obvious we needed to start treatment. It wasn’t going to be an easy road and it will get harder before it gets easier. The next day was surgery to put her broviac in her chest... she looked unrecognizable for three days after that surgery. My fiancé and I could only remember them saying it was just going to get harder, we felt helpless. Then they told us she had a chloroma on her liver pushing against her bile duct... which was rare (a word I have come to hate).
There were only a few doctors that could perform a life saving surgery on my daughter and one happened to be at CHOP, needless to say hours later we were at CHOP. By the grace of God the chemo shrank her chloroma before she needed the surgery. We are now back at Morristown and waiting for her third bone marrow test (all of hers have been while wide awake) to see if the leukemia has subsided. We will be in Morristown for 6 months if everything goes well.
My 10 week old baby has somehow shown me hope through all of this and never goes even an hour without a smile on her face. Nobody in life deserves something this terrible especially innocent children and babies.
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Henry was diagnosed with Pre-B Acute Lymphoblastic Leukemia on May 27, 2017, when he was just one and a half years old. Immediately following his diagnosis, we wereadmitted to the Goryeb Children’s Hospital in Morristown, NJ where we stayed for about two and a half weeks. During this time, Henry had his port implanted and he underwent the beginning of the induction phase of his treatment. Those first weeks were extremely difficult as we tried to adjust to our new reality. It was hard to grapple with the fact that our baby boy now had such a menacing challenge in front of him, but we took it one day at a time and got through it as best we could.
Things became a bit more difficult when we got home. A major part of the treatment during induction involved a high dose of steroids, and we quickly learned that Henry was particularly sensitive to these strong drugs. Within a week of being back home, Henry stopped being able to walk, and he began gaining so much weight that he could no longer fit in his clothes or sit in his high chair comfortably. At one point during induction, he actually gained 10 pounds in one week and went from a size 2T to a size 5T. He also suffered from extreme tantrums and mood swings. But, as difficult as induction was for all of us, we were overjoyed when we learned that, by day 29, Henry’s leukemia had gone into remission.
Since induction, we have been very lucky in terms of how well Henry has responded to treatment. Though we have encountered a few setbacks along the way, we are very grateful that the chemo is doing its job and that the side effects, though difficult, have been manageable. If all goes well, Henry will begin maintenance by March of this year. Henry is back to singing, dancing, playing with this five year old sister, Grace, and acting like an average two-year old boy. However, considering his bravery, his strength, and his bright spirit through all that he has been through over this past year, Henry has proven himself to be anything but average. In fact, he is my hero.