Christine Koh

Hello!

I'm Christine Koh, a music and brain neuroscientist turned multimedia creative. I'm the founder + editor of Boston Mamas, co-author of Minimalist Parenting, co-host of the Edit Your Life podcast, and creative director at Women Online. Drop me a line; I'd love to chat about how we can work together!

Mama On a Mission

crowley1.jpgWelcome to the 4th installment of Boston Mamas Rock! – where we’re giving a voice to fabulous local mamas, whether they be entrepreneurs, avid volunteers, stay at home moms, moms who have closet talents, authors, media professionals, politicians, professors, etc. Read on for today’s interview with Jennifer Crowley, the inspirational mother behind Cian’s Cause, which she founded shortly after losing her son Cian to Neuroblastoma. Then consider nominating yourself or a friend.

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Jennifer Crowley, Founder, Cian’s Cause

Christine: Jennifer, before we get started, please accept my heartfelt condolences on the loss of your son Cian. And thank you for taking the time to share your story with our readers.

Jennifer: You are quite welcome – and thank you for the opportunity to talk about Cian and the disease that took him from us.

Christine: Your son was diagnosed with Neuroblastoma when he was only 5 months old. Can you describe this form of cancer – its origin and prognosis - in a nutshell?

Jennifer: Neuroblastoma is the most common solid tumor cancer in infants and children. The disease typically originates in the abdomen, either in the adrenal glands (located just above the kidney in back of the upper abdomen) or around the spinal cord. There are approximately 650 cases of Neuroblastoma diagnosed in the United States each year, with two-years being the average age of diagnosis. The causes of Neuroblastoma are not completely known; however, less than two percent of all cases are thought to be hereditary.

Neuroblastoma is commonly fatal; the long-term survival rate for children with high-risk Neuroblastoma, which accounts for most cases, is less than 40 percent.

Christine: Reading the story of your son’s symptoms (black eye, vomiting, lethargy) cropping up out of nowhere gave me chills. As you received various misdiagnoses (ear infection, hand, foot, and mouth disease) what was going through your mind as possible alternative explanations? And how on earth did you stay calm in the face of these mysterious symptoms?

Jennifer: Cian was our first-born and his first five months of life were incredibly healthy ones. Until the week he fell ill, he had been a happy, thriving baby. Given that so many different providers diagnosed him with benign conditions, it never crossed our mind to be overly anxious. We were first time parents - we were naïve. We trusted the medical professionals we were seeking help from and expected whatever was wrong with our baby would be resolved. You tell yourself, we live in Boston and have access to the best minds that medicine has to offer – you don’t really believe that a shiny new baby could have a condition that is essentially terminal. We had plane tickets to Ireland to spend time with my husband’s family the week Cian got sick – I knew we’d have to postpone, but I never thought for a minute we wouldn’t be going. Ignorance is bliss…

Christine: When you finally were sent to Children’s Hospital in Boston for Cian’s neurosurgery, unbeknownst to you, the Department of Social Services was en route to meet you to investigate child abuse concerns. I can only imagine the anger and hurt you must have experienced; how did you cope with and recover from these allegations?

Jennifer: I honestly have not recovered from the allegation – veiled as it was. To sit in an ambulance (we were being transported from a community hospital to Children’s – the docs at the community hospital levied the abuse suspicion) in rush hour traffic thinking, could this be? Had I hired someone [our nanny] who was responsible for potential brain damage in my first and only child? Words can’t describe what that felt like. We were catatonic. And then to get to Children’s and not exactly be welcomed with open arms – to be questioned by a social worker – to sit in near silence for hours on end while asking myself – will Cian be taken away from us? Will the police be called? When I reflect over the whole experience – even with Cian dying – the real trauma lies in the diagnosis process. We have since received apologies from the providers involved in the initial misdiagnosis and understand Cian’s case was subsequently presented to all ER docs at Children’s to help educate about the disease – those actions help to some degree – but a lot of harm was done that day, particularly in the community hospital. To illustrate - at Cian’s autopsy meeting, I actually asked if there were signs of abuse. It was still in my head. We now have another son who is almost one and I have not been able to send him to daycare. Suffice it to say, I have a lot more healing to do and certainly feel very untrusting of doctors these days, with the exception of our new pediatrician who is simply wonderful and exceptionally compassionate.

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Christine: And similarly, how have you coped with/recovered from the fact that 6 clinicians didn’t catch Cian’s mysterious “raccoon eye” symptom [shown in the fading stages in photo above] - a hallmark sign of Neuroblastoma?

Jennifer: Not exactly over that either… which is why I wanted to found a group to spread awareness. I think back to my first pregnancy, with Cian, and how I poured over every book and magazine available to me. I read articles on SIDS, shaken baby syndrome, first aid, etc… and think if I had only read one thing about raccoon eye, saw a picture of it… I would like to think I would have recalled the article and urged the doctors to rule out the disease or take a closer look at his eye, which no one seemed very interested in until a misinterpretation of a head CT scan (tumor as trauma) and chest x-ray (bone marrow disease as healing fractures) led doctors down one path, even though his irregular blood test results and enlarged liver were not explainable under the abuse diagnosis.

So many times we were told how doctors are trained that, “when you hear hoof beats, think horses not zebras.” Talk about cold comfort. I realize that a pediatrician may go his or her entire clinical life and not see one single case of Neuroblastoma, but how a clinician can mistake a child who is ICU-bound as one that has a mere ear infection is simply beyond me. What I have come to learn is that the eyes are like a window to the brain – so many brain-related ailments in children manifest themselves through the eyes – discoloration, drooping, crossing, and so on.

Christine: You created Cian’s Cause to raise awareness about the signs and symptoms of Neuroblastoma. When did you start the organization? What are the primary ways people can help this organization? And how do you raise awareness both at the local and professional levels?

Jennifer: I created Cian’s Cause only months after losing Cian. I had all this anger and energy and no other way to channel it. I felt as if I lost my standing, my identity, as a mother. I have a background in healthcare and PR so it felt natural to put my skills to good use and try to raise awareness amongst new parents that the disease is out there and what the symptoms are. Basically I don’t want anyone else to go through what we did – which, once I shared it with other Neuroblastoma families, I learned wasn’t all that unusual.

The primary way people can support Cian’s Cause are to tell Cian’s story to new parents, to doctors - to educate about the disease. I also urge new moms not to be afraid to ask family doctors or pediatricians what they know about it or what their experience is with rarer childhood afflictions. At this point I haven’t started the professional outreach to doctors yet, but do intend to with a little funding.

Christine: We first learned about you from one of your friends, whose family has raised money in honor of your son via participating in Alex's Lemonade Stand Lemonade Days. Is Cian’s Cause connected to Alex's Lemonade Stand (an organization started by a girl who suffered from Neuroblastoma) in a formal way?

Jennifer: No, the two groups are not formally connected, though in sort of a spiritual sense, I do feel connected to Alex’s parents given that she also died from Neuroblastoma. They have raised millions for pediatric cancer research – it’s really a tremendous organization. For people who want to support research efforts aimed at kids with cancer – which are drastically under-funded by the government and largely ignored by drug companies given the relatively small market – Alex’s is a great group since they are 100 percent focused on childhood cancers, even those beyond Neuroblastoma. Groups like the American Cancer Society and other well-known (and local) cancer charities tend to direct only miniscule amounts of funding towards pediatric cancer – their defense is that the learnings from adult cancer research will impact new treatments for childhood forms – and this is simply not true given the vast differences in the genesis’ of cancers depending on age and cell biology.

Christine: Your friend/nominator said that just after your son died, you said that having Cian was the best thing that ever happened to you and your husband. And that you wanted Cian's friends to remember that life is meant to be lived. Your strength is so admirable. How do you maintain such a positive perspective? And how do you shore yourself up on the inevitable hard days?

Jennifer: A lot of 2007 seems like a dream. It’s hard to describe how a bereaved parent picks him or herself up everyday and functions as part of society. I think for my husband and myself, there was a lot of denial involved, some therapy, and the support of friends. Whatever positive energy I put forth, it’s all from Cian. He’s always with me. I spent every single day of his life with him – he was a very special child and I can’t help but think he was ours for a reason. I had never spent time in a children’s hospital before his diagnosis and then we basically moved in to one of the most renowned ones for several weeks. Talk about a ridiculously eye-opening experience. I never once asked myself, ‘why me’ or ‘why him’ because in that environment, you are surrounded by families facing struggles. The pain you see on faces in the cafeteria or in the elevator – the afflictions you see that you never knew existed – it really knocks you.

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I have to say, a large part of our healing came from the fact that we were lucky enough to get pregnant again in early 2008 and welcomed another son, Padraig [shown above], in September 2007. He is how we get through the hard days. There are no words to describe how blessed we are to have him. When I think of him turning one in September, it feels like a miracle. He gave us the ability to feel joy again. He gave us our identity back.

Christine: Incredibly stressful events such as these typically strain other relationships. How do you and your husband John stay connected and positive about life after Cian?

Jennifer: The experience of Cian’s diagnosis, the demands of his treatment, and his subsequent death really bonded John and I. We experienced so many private moments with Cian – then when he was gone, it really was just the two of us. Not to make light of losing a child, but once the funeral is over, even your closest friends and loved ones often have no clue what to say to you (and I know, there isn’t exactly a manual written on the topic) so a lot of the time we just felt like, well, it’s really, really just the two of us now. Once I got pregnant, it gave us something else to focus on – I feel like the pregnancy really was a gift from above. And as I mentioned earlier, having another little boy to love and learn from is what keeps us positive and (mostly) functioning.

Christine: March and October (the months when your son was born, then succumbed to Neuroblastoma) must be so difficult – have you found ways to commemorate Cian’s life at these times that bring some sort of peace?

Jennifer: We actually haven’t found ways to commemorate his life – not just yet anyways. One of the really hard things about losing a baby is that there is so much unknown – we don’t know what his favorite game was or his favorite animal – so there is very little for us to draw on to celebrate him. I think we just aim to celebrate him everyday. In time Padraig will become a part of how we commemorate Cian’s life – singing happy birthday to him, sending him balloons – it is very important to us that Padraig ‘know’ his older brother. I can say the spring air – the way it feels and smells – will always remind me of Cian, what it was like to have him at home as a newborn. And the fall, well, it’s a tough time – with the leaves turning, the sun setting earlier – anyways, it’s just very symbolic of our loss.

Christine: Thank you so much for taking the time to share your thoughts. Is there anything further you would like our readers to know about Neuroblastoma or Cian’s Cause?

Jennifer: Nothing comes to mind. But I’d like to say that if anyone, after reading this piece or visiting our website, has any feedback or thoughts on channels to promote the group or Neuroblastoma awareness, I’m all ears!

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Know an inspiring local mama? Nominate yourself or someone else to be featured.


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