In June of 2009, our son Maddox was diagnosed with A.L.L., Acute Lymphoblastic Leukemia. He is a survivor. This is his story.
We first noticed that something was wrong around May 2009 when Maddy started getting fevers with no other symptoms. He would always recover, but only to get another fever within a couple of weeks. By the time he a got his 3rd fever with no other symptoms, we went to our pediatrician to get him examined. She told us that it was not uncommon for toddlers to catch a virus and then get over it - they go on playdates, go to the playground - so we were told that this was perfectly normal. When Maddy got another fever shortly after that visit, I remember saying to my husband one night before bed that I was getting worried about our son and that this just didn't seem right. Maddox also seemed less energetic than before, started to appear pale and was also bruising in parts of his body that didn't make any sense, like his back and his inner thighs. At the time we attributed all those symptoms to Maddy just fighting off the fevers and the bruises to him just being an active toddler. So we decided to just trust what our pediatrician told us. It seemed logical for us to believe that when most toddlers catch something, they get over it. But even then, I had a nagging feeling but brushed it off.
In mid June, we went on a long weekend vacation to visit the kids' Grandparents in Rochester. It was during that visit that it was quite apparent to Maddy's Grandma in particular, that his coloring did not look right. During this visit Maddy was extremely tired all the time and just wanted to lay down - not normal behavior for any active 2 and a half year old! Maddy also did not have much of an appetite. At the time, we didn't think anything of it as he tends to be a picky eater. It was a couple of days into the visit when Maddy developed another fever that we discussed our growing concerns with the Grandparents. It was then that Maddy's Grandma confided in us that as soon as she saw our son get out of the car when we first arrived, she immediately noticed a drastic paleness in his appearance. This really made us notice the changes in Maddy that hadn't jumped out at us before as the changes had occurred slowly over time so we had become accustomed to them and hadn't noticed the drastic differences.
We knew that this was something more, and yes, we were worried, but in no way could we have guessed the unthinkable or even imagined Maddy's condition. Not long after this we realized what a miracle it was that Grandma was as observant as she was because we would not have identified Maddy's illness as early as we had without her having said something.
We remember taking the 6 hour drive back home on Monday morning, June 15, 2009 and calling our pediatrician to insist on another exam and more specifically, a blood test. We arrived back to NYC late afternoon and went immediately to the doctors office who then gave us the rushed prescription for blood work. She agreed that he looked sick and very pale. I took Maddy to the laboratory Tuesday morning for the blood test. By Tuesday afternoon we were in the ER. Tuesday night we were admitted to the hospital. It all really happened that fast. One minute we were being over-cautious parents and the next minute our son was in isolation at the hospital. At the ER all we knew was that Maddy was extremely anemic and that his blood counts were very low. It was when the word oncologist started getting tossed around that we broke down. We didn't know anything specific yet, but it was enough to shock our system with fear.
We watched in agony as our son cried while getting examined, x-rayed, poked and prodded. He was scared. We were terrified. We struggled to maintain a sense of "everything is going to be okay" all the while our world was crashing down, and it was only Tuesday. Wednesday morning Maddy got a bone marrow biopsy and that evening our doctor accompanied by our pediatrician gave us the news.
Maddox was diagnosed with Leukemia. Chemo would begin immediately. My husband and I held our son and each other as tight as we could and cried very long and very hard. We must of cried every day for 6 weeks following his diagnosis. We cried in the hospital together, on the walks home when one of us was going to take care of our daughter while the other was with our son at the hospital and alone at night as the family was separated trying to make sure our whole family was taken care of. On Thursday of that week, Maddy received surgery to place a mediport in his chest so that the chemo could be administered with ease. This was a godsend as the physical and emotional pain of sticking our son with IV's all over his body was definitely taking a toll on him and us. We knew that we had been there for a long time when Maddy would start calling his hospital room home and weakly say "almost home" on our way back to his room after one of his numerous procedures. After approximately five weeks of intensive chemo treatment and isolation at the hospital, Maddy was discharged to continue his treatment at home with clinic visits as scheduled. We still remember the day we brought him home and coming down the street to our building and hearing Maddox gleefully cry "almost home", his real home, our family home. We, along with his younger sister Danika, welcomed him home just in time for his third birthday. This was the best gift we all could have gotten.
During those first difficult weeks, we as his parents felt an overwhelming sense of helplessness, we were emotionally broken. We questioned and agonized over and over again whether there was something we did that caused this or something we didn't do that could have prevented this when the truth of the matter is - there is no known definitive cause. We were told many times to "stay strong." This would have been almost impossible had it not been for the strength and courage of our son and the love of our family and friends. The outpouring of support for our family was truly moving - meals showed up at our door regularly, toys were constantly arriving, months worth of complimentary maid service was given to keep our home clean and a couple of friends even fasted for a week as part of their prayers - so amazing.
Maddox has completed the most intensive phase of his chemo and is now in Maintenance. Our son has endured so much and yet he manages to somehow continue to smile and laugh at his favorite shows and he even got to a point where he would "assist" the nurses with drawing his blood and taking his blood pressure, which we called "arm hugs." To this day, it amazes us how courageous Maddy is with all that he has experienced and continues to experience. He is remarkable. Maddox continues to handle the treatment well. The treatment for A.L.L. is three and a half years. During maintenance, Maddy gets chemo every day by mouth in addition to other supportive drugs most of which tastes quite unpleasant for him to say the least. He also goes to regular clinic visits where he gets additional chemo through his mediport. This phase allows Maddy to get back to some level of normalcy, to have playdates with other children again, go to the playground and resume other activities but the reality is, while he is in treatment, we must continue to be very cautious of his exposure. Quite simply, he can be a kid again - but under extraordinary circumstances.
Every once in a while, out of nowhere, while simply walking down the block or just watching some random TV program, the reality of our situation hits us and we are fighting off tears as we do our best to control our emotions. So each day we do our best to focus on the good moments. Maddox absolutely loves Thomas the Train and is quite a musical child who loves to sing, dance and play instruments. Maddy enjoys his favorite shows, Blues Clues, Superwhy and Kai-Lan just to name a few. He most recently discovered Sesame Street - laughing and giggling with hysterics - music to a parents' ears - at Elmo's World. It is Maddy's laughter that magically makes it all better and it is his joy that gives us courage.
We know that we have quite a road ahead of us but with the support of family and friends, we take it one day at a time drawing strength from all the love that surrounds our family. Maddox is our brave little boy and we are so proud of him! He is our Hero.
August, 28, 2012
We wanted to celebrate this very special occasion with all of you. After over 3 years and 2 months of treatment, Maddy got his last chemo at the Clinic on Thursday, August 23rd and got his last dose of chemo at home yesterday, Monday, August 27, 2012! We wanted to take this moment to thank all of you for the amazing support and love you have shown our family over these years.
We are beyond proud of our son. For everything he has been through, you would never know it. Maddox is kind and caring, with the most amazing sense of humor, and a laugh that puts a smile on your face every time. He has shown incredible courage and strength.
During Maddy's treatment, even after we settled into a "routine" of Clinic visits, hospitalizations and giving Maddy chemo at home every day, we never allowed ourselves to think back to those early days when he was diagnosed. Many of the memories were too painful and feelings of fear, heartache and helplessness were just too much. We learned to live day to day, smiling through the tough times, focusing on the good and always, always looking forward putting one foot in front of the other determined to get to this day. On the day of Maddy's last Clinic chemo, sitting with the nurse with Maddy on my lap ready to get his last dose of Vincristine, Maddy must have referred to his IV as his "necklace." The nurse laughed and asked me how it came about that we called his IV a necklace as she'd never heard it been called that before. Maddy was just a baby when he was diagnosed so Brad and I made up names so that Maddox wouldn't be scared. When he got his blood pressure, we called it "arm hugs", we referred to the Clinic as "The Kitchen" because there was a toddler kitchenette set that he loved to play with when he went in for his chemo, and so somehow, his IV came to be called a "necklace". I began to cry as I shared this with the nurse and she and I told Maddy that today, Mommy has happy tears. In that instant, the significance of that moment came over me and as I watched the nurse give Maddy's last chemo push, I was taken back to those early days and for the first time in a long time, I allowed myself to remember.
It was in June of 2009 when Maddox was diagnosed with Acute Lymphoblastic Leukenmia. Unprepared for what we were about to hear, Brad and I were in the hospital with Maddox when the Doctor comes in, sits across from us and says, "Maddox has leukemia." There was silence. In those few seconds, we probably stopped breathing. Then we fell apart. The only sound we heard was our uncontrollable crying as we held our son as tightly as we could. We cried for many days after that as we watched our son, only 2 and a half years old, subjected to exams, needles, x-rays and tests. We felt helpless to stop it. As his parents all we wanted was to just make it go away. Maddy was soon placed in protective isolation and would begin chemo immediately. As our family and friends came in full force to support us, we managed to get it together. We learned a whole new language of CBC's and neutrophil counts and chemo medications. Once he completed his hospital treatment, we were able to bring him home. That was a great day. Those first few months of keeping Maddy in isolation at home and giving him chemo were not easy to say the least. He got chemo by mouth around the same time every day. There was also protocol we had to follow and precautions we had to take. While he was being treated, Maddy couldn't swim in the ocean or public pool, he was advised not to play in the sandbox or grass, he couldn't play contact sports, we had to plan playdates with caution and he practically bathed in Purell whenever we went out. Through it all, Maddy never complained. Eventually, it just became part of what he knew, part of how we as a family adapted. It was Maddy's courage, that gave us strength.
As heartbreaking as some of the memories are of those first few weeks, believe it or not, there were also moments of humor. I remember one night when Maddy was on a heavy dose of steroids which made him ravenous...it must have been 3AM, lying next to him in the hospital bed in the dark when all I heard was him munching on an entire pack of sliced cheese! The steroids also made Maddy quite cranky. One day, Maddy was furiously demanding breakfast sausage. Well, it was dinner time and the cafeteria had no breakfast sausage so Grandma Shepard whipped up maybe 2 packs of sausage and walked almost 2 miles to the hospital to get Maddy his sausage. Yeah, we can laugh about it now! On another day, Maddy became curious about his mediport which is placed just under the skin on his chest and he said, "Mommy, what is this?" I said, "That is your port so the doctors can give you your medicine." He replied, "Did I eat it?" I explained that the doctors put it there, but his logic was quite clever!
Because of this experience, we have come to appreciate the simple beauty of an ordinary day and we are so thankful for all that is good and simple.
As we take in the significance of this occasion, there are some special thanks we'd like to make.
We want to first and foremost, Congratulate Maddox for his perseverance, courage and strength! You are a brave kid! Well done, Maddox!
We want to thank our amazing daughter, Danika. It is the siblings that are often referred to as the unsung heroes in this fight. When she is old enough to understand, we will explain to her how much she sacrificed and didn't even realize it to help take care of her big brother. Because Maddy had to be isolated at home for several months after being in the hospital, in order to protect him, Danika didn't go out either. Danika was Maddy's only playdate and friend during those months of isolation. She was there for him. Because of the necessity of our circumstances, Maddy got most of our attention and we know that must have impacted her. She was just one and a half years old and didn't know what was going on. All she knew was that Mommy and Daddy were in and out of the apartment for weeks each taking turns at home so that the other could be with Maddox at the hospital. Despite it all, Danika has shown Maddox so much love and compassion and we are so proud of her.
A huge thanks to Dr. Gustavo Del Toro, Maddox's Oncologist at Mount Sinai. From the beginning you never sugar coated anything for us. You prepared us for this fight and in the process, earned our utmost respect and trust. Most importantly, you earned Maddox's trust. In fact, whenever we needed Maddy to comply with taking his chemo or follow protocol, all we had to say was, "Well, Dr. Del Toro says you have to do it" and he totally would do it - we thank you for that :) We all felt safe that Maddox was in your caring and capable hands.
Thank you to Megan, Rosie, Chrissy, Amy and Vanessa, Jeannette, Betty, Sara, Julia and all the doctors, nurses and staff at Mount Sinai Pediatric Oncology for taking such great care of Maddox and for all the kindness you have shown our family while Maddy was being treated there.
Thank you to Dr. Gary Mason, Dr. Peter Steinherz and the Peds team at Memorial Sloan Kettering for making Maddox's transition to MSKCC a smooth one and especially for getting Maddox across the finish line!
Thank you to Linda, Mimi, Sheryl and the entire Merricat's Castle School family. We are beyond grateful to all of you. Even with the precautions and limitations we had to take, it was a gift to have Maddy go to school and a gift to have some level of normalcy under our extraordinary circumstances. When Maddox was given the green light to go to school, you made sure to put certain protocols in place to keep him safe and because of that, the entire Merricat's community of parents and teachers came together to look after Maddy's well being so that he could enjoy school. We love you!
Thank you to Maddy's Kindergarten teachers, Ms. Ramona, Ms. Nicolo, Ms. Diaz and Mr. Mike. You were so attentive with all of Maddy's precautions in school and always kept us informed whenever it was necessary so that we could keep Maddy safe. The kid loved Kindergarten - field trips galore! We are so thankful Maddox was able to participate in all those events, knowing you all were looking after him.
Thank you to Barbara Zobian and Candlelighters for letting us know we were not alone in this fight. Together, through Candlelighters and with the amazing generosity of all of our family and friends and the MetLife team we have raised almost $50,000 over the past two years for The St. Baldrick's Foundation to support critical childhood cancer research and cure!
Thank you to the Lodwig Family. You guys went above and beyond to support our family. You are awesome! You are our family.
The next two people we want to thank are probably two of the most generous, selfless, kind-hearted and loving people we know. With everything we feel in our hearts, we thank Dave and Cathie Shepard, our Mom and Dad. From day one, you never left our side. You came at a moment's notice whenever we needed you and even when we didn't :) Your determination to get us through this was unwavering and so was your love and commitment to our family. We love you so much!
To all of our family, friends, co-workers, with all of our hearts, we thank each and every one of you. As Brad and I reflect back on the past 3 years, we are overwhelmed with emotion. From the food and the toys that showed up at our home to the incredibly generous donations made to the St. Baldrick's Foundation, the outpouring of support was truly moving. My Mother-in-Law has said to me that in tough times, God shows himself in others through acts of kindness. We knew we were not alone in this fight. You all lifted us up and we were strengthened every day by your love.
We have included an album which captures some of the moments of this journey. As we remember those moments and do our best to put them behind us, we do so with appreciation because by allowing ourselves to take it all in, we allow ourselves to truly appreciate how far we've come. Maddy continues to be in remission and is doing well. Please keep him in your prayers for continued good health.
Today is the first day that Maddy is chemo free! It is the first ordinary day we've had in a very long time. Ordinary is good. Ordinary feels amazing!
We celebrate this achievement with all of you!
Brad, Geri, Maddox and Danika