Cowden syndrome – Page 38

“Sapphire”

Published on June 21, 2012June 21, 2012 by beatingcowdens1 Comment

Grandpa, …, passed away on Monday, June 18, 2012. . Born in …Grandpa lived in … for many years before moving to …7 years ago. He worked as a lineman and foreman for PSE&G for many years prior to his retirement. He was a proud veteran of the U.S. Army during WWII and the Korean War and lifetime member of the American Legion. Beloved husband of 60 years to Grandma. Devoted father to…and his wife … and … and his wife …. Cherished grandfather to 6 grandchildren and 3 great-grandchildren. He was also survived by many loving nieces,nephews and friends.

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The above is a snapshot of my Grandfather’s obituary. I removed the names and locations, because really – they don’t matter. He was a kind and gentle man, loved by everyone. Classy, and wise – funny, and easy to talk to.

My daughter proved to me again this week, that although we have Cowden’s Syndrome, it does not have us. It does not define who we are.

She is 8, turning 9 in a few short months. This was her first funeral. She went to the funeral parlor with me, alone. And then to the funeral with our family. She acted as one of the honorary pallbearers. She cried, she smiled, she focused, she hugged all the right people at all the right times. She got through the service, and hours into lunch before we handed over her Itouch – she never even asked.

My Grandfather called her “Sapphire.” He knew she was special. He made sure she had a sapphire necklace. Her eyes lit up whenever they were together. He will be sorely missed by all of us.

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Once again – I am reminded of how precious life is. And once again, I am humbled and proud to be her mother.

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Father’s Day

Published on June 17, 2012June 17, 2012 by beatingcowdens2 Comments

Some days it’s not about Cowden’s Syndrome, or tumors, or doctor’s appointments. Some days life just is about life.

Father’s Day. A day to celebrate the fathers in our lives.

My husband is the best dad in the world. I mean it. And he is a pretty amazing husband too. There aren’t enough words to describe how lucky I am.

My Dad, tries his best. He and my mom divorced when I was 5. He has struggled with his own life through the years, but we have stayed in contact. He does the best he can.

My stepdad, married my mom 24 years ago. He inherited 2 bratty teenagers and has loved us as his own from the beginning. He has put us through college, paid for 2 weddings, fixed houses, and been there through it all.

My Pop, my mom’s Dad is 92. A WWII veteran, and a retired firefighter, he is amazing. He and Grandma still live on the second floor of their own house. We lived in their house for 15 years, and they became a second set of parents for us. Now they are Great Grandparents. They pick up my daughter on half days, and love spending time with her.

Today my heart is heavy though. My stepdad’s father is suffering. When his son married my mom 24 years ago, they had no grandchildren. They didn’t expect to start out inheriting two teenagers, but they did. And they handled it gracefully. Over time Grandpa came to love us in a very special way. He is especially attached to my daughter, who he calls “Sapphire.” He even made sure she had a special sapphire necklace to always remember her name. He has been brave his whole life and has fought cancer in more places than I can count. He has been in the hospital for a month now, and this is it. He is ready. He has had last rites. He has asked his boys to take care of their mom. He has told God he is ready to go. So we wait.

Today we remember the fathers, grandfathers, and great grandfathers that have touched our lives. We hug some, and we miss some. We acknowledge their impact on us.

And today in my house, we whisper constantly a prayer to God. Today it’s not about test results or surgeries. Today we ask that He be merciful. Grandpa is ready to rest…

“I know…”

Published on June 15, 2012June 16, 2012 by beatingcowdens1 Comment

Kids know. They have instincts adults have lost. Never underestimate the power of a kid. (This was written a few weeks ago, and I am just now getting to adding it here.)

I know that my daughter is a smart girl. I know that she is in so many ways wise beyond her years, but I never cease to be amazed by her instincts, and her ability to read people – especially her family.

She knows that we share a genetic link and that we both have the same – Cowden’s Syndrome. She knows that we tend to grow things. She knows about her own AVMs, and that she has some thyroid “bumps” we are watching.

I am guarded but honest when I speak to her. It is important when you have a child who is sick so often that they trust you. I learned there is no way to lie to her and keep her trust. So, I answer the questions she asks, using as few words as possible, and I always stay honest.

That is why I was floored a few nights ago. She has been having a hard time with her knee again. In the middle of a not so common, depressive episode she complained for a while about her knee, and the permanence of the pain and swelling. She was frustrated, and she is allowed – so I held her as she cried.

What floored me was what happened next. She grabbed onto my shoulders and looked me in the eye. She said “I know…” I said, “What do you know?” She said, “Cowden’s makes it more likely for us to get cancer. You had cancer once and you were ok. Are you going to have it again? Is that why you had your other surgery (the hysterectomy?)”

I swallowed hard, intent to stay focused. “I don’t know,” I told her. “I don’t think so. We just took this stuff out to be safe.”

She looked at me with those tired eyes. She looked at me for a long time. She held me tightly and said, “I don’t like leaving you ever – even for school.”

Holding her as tightly as I could, I said, “I know…”

Collateral Damage

Published on June 8, 2012June 8, 2012 by beatingcowdens5 Comments

Collateral damage occurs when something incidental to the intended target is damaged during an attack. (Wikipedia)

I don’t think it’s far-fetched to equate Cowden’s Syndrome to a war.

Our bodies are under attack. This PTEN (tumor suppressor gene) is broken, and we are being bombarded with cellular overgrowth in the form of all sorts of tumors – benign and malignant.

We spend our days, (and some of our nights) strategizing on how to prevent, fight, or get rid of these tumors.

It can be an all-consuming job.

When we have to have the tumors removed there is the recovery time, which can seem endless. The battle scars, which forever change the landscape of our bodies also take some getting used to.

There is the financial drain, from lost wages, and the endless battles of medical bills are a war onto themselves.

There is also the battle of trying to feel well all the time, while convincing people that this is a legitimate illness, and you really are sick.

This is a war my daughter and I are fighting together. Each on our own road, but we are battling the same enemy.

Like in every war it is inevitable that there is collateral damage.

Today was the 3rd grade play at my daughter’s school. It was also “Family Fun Day,” where the parents and children in the entire 3rd grade head to a local park and spend 3 hours chatting, playing and sharing a picnic lunch.

It was about 82 and sunny here today. The weather hasn’t been this perfect in weeks.

And I, I was at work. My daughter was at “Family Fun Day” with some very caring mothers of the friends she has in her class.

How is this all connected? Very easy.

If I were not me, fighting Cowden’s Syndrome, and all its ramifications, and taking care of a girl who is also fighting it… maybe I could have been there.

Instead, I missed 4 days of work for her AVM surgery, 24 days for my double mastectomy, 12 days for my hysterectomy, and when there are only 183 school days in the year, you can see the percentages aren’t good.

I got permission to go in an hour late. I got in to see the dress rehearsal of the show. I stole 10 minutes on my lunch to drive by the park. And I spent the whole day thinking how nice it would have been to just take a personal day and hang with my kid.

She is such a good girl. “Don’t worry Mommy, I understand. I am so glad you are feeling better, and I know you need to get back to work. Maybe next year we will all have less surgeries, and then you can come?”

Collateral damage – my girl having to grow up so damned fast.

I really do hate this disease.