First and foremost, my wife Jenn and I want to thank you for taking the time to visit my fundraising page and read our story. We have shared a small sliver of what we have gone through on social media but the truth is, there are no words descriptive enough to emulate the pain and the sorrow we have endured losing two of our children in less than a year. Sharing what we have gone through and opening our hearts to those who read this is extremely personal for us but we know something good needs to come out of our pain. There is no doubt in my mind that the 'something good' is giving back to Boston Children's Hospital by raising money to give the best care in the world to those who need it most.
When I think about putting all of this into words, one common theme runs through my mind- the unknown. Every day we wake up, knowing what to generally expect. On the rare occasion, we wake up not knowing that very day is a day that will change our lives forever. For me, June 9th 2007 was the beginning of what I, true to form, unknowingly met my wife Jenn. It was the day that started my crazy journey with her, the day I wouldn't change for anything in the world, and the day that shaped the rest of my days to come. Because of that day, I have experienced my highest of highs, and my lowest of lows. Fast forward a mountain dog, a house, a marriage, and our toddler Chase later, I found myself on another one of those unknowing life changing days. It was my second Father's Day opening a card from Chase and "Baby B 2.0." I don't know if any of you reading this are lucky enough to experience parenthood, but getting to experience this twice was a true blessing... and a curse.
At Jenn's 18 week anatomy scan her doctor, Dr. Tamara Takoudes (who, if I had more time, would run a marathon just for her) found the 'vermis' in our son Aaron's brain was underdeveloped (responsible for movement and coordination) which meant a whole slew of potential complications and syndromes. Not knowing what we were dealing with, we quickly got an appointment at BCH which entailed an ultrasound, an MRI, and a meeting with a geneticist. This began our journey with them.
I remember it being a Wednesday. I remember being scared and overwhelmed. But what I remember most was this unexplainable feeling that no matter what I was feeling, I could never be going through what Jenn was going through. This was happening to her, inside of her body. It was Jenn being poked and prodded, hooked up to machines and lathered in that weird ultrasound gel. Not me. If I could take her spot in all of this I would in a heartbeat, but I can't. So instead I decided I would be strong for her, I would hold her hand and squeeze it tighter when she cried harder, which is exactly what I did in the days to come. We learned that Aaron had a significant deletion of his third chromosome which explained the abnormalities in his brain development. He was the 15th case in the entire world (seriously!) to have this type of deletion, and the largest one the doctors at Children's have seen to date. Although there was little research on what we were looking at, we were at the best hospital with the best doctors, helping us make an educated decision on what we did know. We knew it was likely Aaron may not survive, or for very long. If he did, we knew it was likely he wouldn't walk, talk, or breathe on his own. We knew it was likely he would have little-to-no cognitive ability. We knew it was likely that his quality of life would be poor and it wasn't something we would wish upon anyone or want for ourselves, let alone want for our son. Although it wasn't an easy decision, with the help of the doctors at Children's, it was at least a clear one. The life Aaron deserved to have was not a life we could offer him here on earth with us. We were waiting on the amino test Jenn had done to confirm the findings but in the mean-time, we began to mourn the loss of our son who was still very much alive. Jenn carried him for 2 more weeks, going through all the motions of pregnancy- everything from feeling him kick to having morning sickness before we reached another one of those life changing days. October 20th 2017, at 22 weeks pregnant, Jenn and I said our goodbyes to Aaron before his life was terminated. Although I am thankful we have that option, I hate that word. I hate that it's a regular part of our vocabulary and a regular part of our life. I hate that we will never get to meet Aaron, hear his sweet laugh and watch him grow. I'm angry that all we have of him are his footprints and that his entire "life" fits inside a shoe box. We named him Aaron because it means 'mountain of strength' and we knew we needed that to get through this new uncharted territory of sadness we just entered.
But through all of that hate and anger came hope. Hope that one day the pain of Aaron's loss would get a little bit easier. Hope that one day Jenn would not cry herself to sleep. Hope that one day Chase would get to experience being a big brother. Hope that our family would find peace and move forward. And that day did come, on February 25th 2018, one day before Aaron's due date of the 26th. We smiled and felt excitement again for the first time in four months; that was the day we found out Jenn was pregnant again. Was it too quick? Probably. Was it overwhelming and scary? Definitely. We decided to take it as a sign from Aaron that he is happy and we should be too. And as luck would have it, it was another boy! Normally this would be the part in the story where the happy ending comes into play but unfortunately that isn't the case (sorry you have to keep reading).
At Jenn's 12 week ultrasound, one of Cameron's kidneys looked slightly larger than the other. We were reassured that this is actually pretty normal to see, especially in boys, and honestly, there was no way in our minds lightening could strike twice so we continued to embrace this pregnancy and enjoy our excitement of our growing family. At Jenn's 16 week ultrasound, the kidneys got a little worse, again at 18 and again at 22. Jenn also had rapidly decreasing amniotic fluid and by 24 weeks, we found ourselves at Children's once again for another round of MRI's, ultrasounds, an echocardiogram, and more meetings with more doctors. I can honestly say we were not prepared for what was about to come. We sat in the same room, at the same table, in the same chairs, listening to the same doctors tell us the same thing- "I'm so sorry."
Cam was diagnosed with a rare disorder called VACTERL which is an acronym for typically three or more medical anomalies (vertebral defects, anal atresia, cardiac defects, tracheo-esophageal fistula, renal anomalies, and limb abnormalities) occurring at the same time. From what the doctors could see, Cam had four. He had partially developed vertebrae and a tethered spinal cord, an underdeveloped valve in his left ventricle of the heart, a (potential) clubbed right foot, and most extensively- his kidneys were significantly impaired. VACTERL in itself isn't fatal but Cam was soon in complete renal failure which left us with more of those unknowns. Because Cam was in renal failure, he was no longer producing urine which makes up his amniotic fluid which is crucial for not only his development but his survival as well. One of the biggest concerns we were faced with was Cam compressing his umbilical cord due to the lack of fluid suspending around him. Other unknowns- would Cam survive day to day? How else was this diagnosis effecting him? If he did survive, what would his life look like? Would Cam be able to go on dialysis and furthermore, would he qualify for a kidney transplant? All questions even the experts couldn't answer until Cam was born and we could see how he developed while in gestation.
We mulled over every possible option from termination again to a long term stay in the NICU if Cam survived. How was it even a conversation we were having again? Why is this a choice we had to face again? We were so confused, we knew termination wasn't a road we wanted to go down again but was the alternative even better?
Jenn carried Cam for 7 more weeks since his diagnosis. Once a week she went into Boston to have Cam monitored. Some weeks we saw his development get worse with less and less amniotic fluid, some weeks we had a glimmer of hope with weight gain and slight images of the bladder (which we hadn't seen since 22 weeks). Our rollercoaster came to a head on another one of those unsuspecting days that changed our lives; after a long day in and out of the hospital with contractions, Jenn went into premature labor. Cam entered this world on Monday September 10th 2018 at 4:03am weighing 3.03lbs, 16.5 inches long, and a mere 31 weeks old. Jenn delivered him at Beth Israel Hospital but by 7pm that evening, he was transferred to Children's for closer monitoring by the world's best specialists.
Cam was every bit strong as he was brave. We were unable to stay with him at Children's but we knew he was in the right hands. His nurse comforted me as I kissed my newborn baby goodnight for what I didn't know would be first and only time I did so. Cam made it through the night but by late Tuesday morning Jenn and I met with some of his doctors, knowing they would confirm with us what we already knew. Cam was not a candidate for dialysis which was desperately needed to save his life, he was too small and his lungs were too underdeveloped. We have been filled with uncertainties along the way but the only thing we knew for sure was that we weren't willing to let him suffer just so we could have more time with him. I held Jenn's hand as we made the decision yet again to give a better life to our son than what earth has to offer. We stopped treatment around 2pm on Tuesday. The incredible nurses and social workers were there every step of the way. We gave him a bath, we changed his diaper, and we dressed him. More importantly, we loved him. We got to hold him, kiss him, laugh with him, cry with him, fit all that we could into his 40 hours of existence. By 8pm that evening, September 11th 2018, Cam peacefully passed away in Jenn's arms. It is a feeling I can't put into words but a feeling I will never forget. It is a sadness that is unbearable some days but a sadness we will selflessly endure over and over again so Cam can live free of pain and suffering.
We had two goals for this pregnancy: to have a live birth and to hold Cam. If it weren't for the incredible nurses and doctors at Children's we wouldn't have the time and the memories we got with him. They gave us time with him that can never be replaced, time that that I can never fully thank them for because there are no words to express how valuable it was to us to hold our baby boy, even if it was just for a few hours. This was something we couldn't do with Aaron and something we knew was all we would have with Cam.
The truth is, I can't express my emotions well. I can't talk about the pain I feel and I can't imagine what Jenn goes through on a daily basis. So I have chosen to do what I know. I know how to run. This may be a silly way to express my grief and something some people may not understand but through me running the Boston Marathon I have the ability to raise money for BCH that will make a difference and touch the lives of people beyond these words. I hope that Marathon Monday, April 15th 2019 will be one of those unexpected life changing days that change my life and the lives of others.
I chose to run for the incredible nurses and the doctors that fought so hard for us to be able to hold Cam. They are the unsung heroes in this world who thanklessly stay late after working a 12 hour shift and give up time with their own loved ones to make sure their patients and families are comfortable. I run for them because they hold our babies when we can't be there. I run for them because they advocate for our children since they can't do so themselves, ensuring they are treated with dignity.
I choose to run for the past and present families of Boston Children's Hospital that have shed tears alongside of us, feeling our pain and grieving our grief. I run for the future families of BCH who may hear one less "I'm sorry" or have one more answer that we didn't get because of the money we helped raise. I run because one of those future families may be someone I know or someone reading this- a family member, a friend, an acquaintance, a coworker, a neighbor, even a stranger- and I will do everything in my power to not let them feel this emptiness.
I choose to run for my fellow dads out there who have sat at the same conference table I have, getting kicked under the table for fidgeting while the doctor is talking. I run for them because I know how hard it is to stay strong and be the ears during the conversation with the doctors when their wife breaks down. I run for them because of all the dishes we do and laundry we screw up when our wife can't out of bed.
I choose to run for my wife who, although she won't admit it, is the strongest and bravest person I have ever met. I run for her because she is my rock and the foundation of our family. I run for her because even with all of her pain and sadness, she gets up every morning and holds her head high. I run for her because she has given me the chance to be a father three times and I will never know how to thank her for that. I run with her commitment to motherhood in mind, hoping I can accomplish a small fraction of what she does on a daily basis for our family. I run with her pain in mind, channeling her strength and hoping to ease some of her heartache knowing we are paying it forward to someone in need.
Above all else, I choose to run for my two sons who simply will never get to run alongside of me and enjoy in my passion. I run in their honor and share their story since this will be their only legacy we will get to be a part of. I will never get to witness their first steps or first words. I will never rock them to sleep or hug them when they get scared. I will never get to cheer for them at a hockey game or see their game winning goal. I will never watch them graduate or watch them smile as their bride walks down the aisle, but I choose to run so other families will get those opportunities. I run for them because I know they would want me to. I run for all three of my boys- Chase, Aaron, and Cameron, so I can set a good example for them, so I can show them perseverance and determination, and so I can make them proud.
Thank you for your time in reading our story. Thank you for crying with us, supporting us, and believing in us. Please consider donating to this cause and aiding in my efforts to make our tragic situation hopeful for someone else. Please know that your donation will help children fighting for their lives, it will help parents who are struggling to pay for their child's fight, and it will help doctors provide innovative research and medicine make those fights possible. Mostly, it will put some positivity back into this world and back into our lives as we begin to move forward.