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Sharing our family's journey with a rare pediatric cancer predisposition syndrome known as CMMRD.

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Opening Windows

4/12/2021

7 Comments

 
by Ed
I have often heard the saying, “When a door closes, a window opens.” Many have applied this to their own experience… and the question remains, “Is it God? Divine intervention? Chance?” We may not ever know and so we all relate to the experience through our own beliefs to make sense of it. 
​

We tried for a long time to conceive. We finally did and would not change that for the world. Adeline is an amazing gift to the world. She was born with a genetic abnormality and at that moment the story was written; the room was built and that door was closed.

Adeline came into the world in dramatic fashion. I remember the doctor trying to deliver and I was so nervous that she would hurt Adeline’s head or eye because of the way she was swiping the circumference with her fingers. Eventually, she was born only to spend the next several days in NICU. That too was a draining, scary experience, but it finally ended and we brought our little girl home. Adeline was born with unusual birthmarks that we now know are called café au lait spots. Was this a window? The pediatrician could have raised awareness of these markings and their implications. Ultimately, we could have been more curious to research them, but I suppose we were content to think they were harmless. We did not go through that window.

In Adeline’s first year we noticed that one of her eyes has slightly more fullness at the eyelid. I know that rarely is someone’s face truly perfectly symmetrical, so it was not of great concern. We did attend an appointment with an eye specialist who told us, “It is nothing. She will grow out of it.” Again, content with what we heard, we went on with life unaware that this is sometimes an ominous sign. Was this another window opened before us that we could have gone through? 

My sister had informed me of a genetic testing service that would test me for free because it was discovered that one of my parents was positive for Lynch syndrome; I was indifferent about it and closed that window.

My wife was likewise aware that Lynch existed in her family, but because of our lack of knowledge it was not perceived to be an influential factor and that window closed as well.

At the beginning of 2020 we decided to try to conceive a sibling for Adeline. After many months of no luck, we went through the checklist to be sure everything was working. Then in December, we were referred to a fertility clinic which required us to complete genetic testing prior to starting our first treatment cycle. Our general carrier testing results were unremarkable, but it was suggested that we pursue optional genetic cancer screening due to the history in both our families. Another window opened and this time we went through, unaware that we had.

The way we were introduced to CMMRD through the genetic counseling service was atrocious and unprofessional. It is a story for another time. What I realize now is that there were numerous opportunities for us to potentially discover that Adeline was born with CMMRD. Someone wanted us to be made aware of it so that we could be prepared to battle it. We needed to not be blindsided by it later in her life. 
​

We were in a dark room with the door closed all along and did not even realize it. Maybe there is some force, some power, something Divine leading us to where we are now... going through the window.

We will research. We will plan. We will fight. Adeline will prevail. And we know that if we find ourselves in another room behind a closed door… we will be aware and find that open window.
7 Comments
Susanne O'Callaghan
4/13/2021 06:54:22 am

To my wonderful nephew, Eddie! Your story is so moving! You and your entire family are so wonderful! You are great parents and Adeline is in the best hands she could ever have! We love and support you all.
Love, Aunt Susanne and Uncle John

Reply
Christie Nunan
4/13/2021 09:13:15 am

Ed, thank you for sharing this story. It’s a hard one to read, but so beautifully and well written. Not a day has gone by since I received your email to the family, that I haven’t thought about you, Christine, and Adeline. Although I’m on the other coast, please know that I pray for you, have hope for you, and am sharing your story to friends and doctors I know to possibly open another window for you. I love you so much cousin, and your beautiful family are in my heart - Christie

Reply
Dianne Holmes
4/13/2021 03:48:16 pm

I am a very old dear friend of Donna and Tom. We will be praying for your sweet baby Adeline and wishing her much good health throughout her beautiful life!

Reply
Mark O'Callaghan
4/14/2021 05:27:23 am

Eddie, Christine and Adeline,
You are all so strong and God will get you through this. I think there is light of hope that comes from this pandemic. I remember a doctor telling me last spring that the earliest a vaccine was developed and brought to market was 48 months. In 2020 they did it in 9 months. I think the innovation of treatments over the next few years will advance dramatically. Keep strong and know you have a team of loved ones behind you all the way!
Love, Uncle Mark

Reply
Aunt Catherine OC
4/17/2021 01:18:11 pm

Dearest Ed, Christine, Adeline and family

Glad you have this website now to keep the
family informed. I am here for you any day,
any time. We are family. I love you 💔

Reply
Lisa Pizza
4/20/2021 04:23:21 pm

Thinking of your family ❤️

Reply
Performer 8 Reviews link
7/14/2021 09:56:43 am

I am glad that you shared this This is really fascinating, You are a very professional blogger.

Reply



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