Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Friday, September 25, 2009

To the Tips of the Stars

I've worked on this post a hundred times, starting over a month ago, and I just don't know how to write it. I'm usually not at a loss for words, but this time I am.

So I'll just tell the story.

It was 1995, just after Christmas. Steven was 15 months old. We'd spent the past week in PICU, including Christmas, at Children's Hospital San Diego after Steven suffered a life-threatening bout with pneumonia.

We got a phone call from my 4-year old niece Kyra who told us all about her Christmas. Kyra's inoperable brainstem tumor had recurred the previous September with a vengeance and her family had paid for two more months of her life with aggressive radiation.

Afterward Kyra's mom shared with me that Kyra had woken up that morning having lost the use of her right hand. It was the first outward sign of her cancer coming back for it's third and final round.

Kyra slowly declined over the next few months, she was in no pain. She took her last breath the day after Valentine's Day in 1996.

Sometime in late January or early February, I forget the exact day, Kyra's mom Deb sent out a letter that began, "I regret to say that Kyra is dying..."

Steven continues to do well. We are so very blessed.

The thing I couldn't bring my self to write was that our friend Regina was dying.

We've lost too many friends already, still, there's no getting used to it, this hurts.

This story had to start with Kyra because she is where this began. When Kyra was ill, before we ever imagined that Steven might end up with a brain tumor, I was involved in an online support group and through that group met a man who lost his daughter to a brainstem tumor in 2001.

Two weeks after we returned from Memphis at the end of Steven's treatment, my friend sent out an email looking for a family to pair up with a family near us whose daughter had just been diagnosed with the same rare brain tumor as Steven.

And so we met the Tans, who live about an hour away from us. We shared our experiences with them and they ended up taking Regina to Memphis, to do the same treatment that Steven had just completed.

Regina did really well for a while, following in many of the same paths as Steven, eight months behind him.

But she relapsed in June 2007 with over thirty new tumors in her brain. She's pretty much been on treatment since. Her doctors did an awesome job of keeping her alive without compromising her quality of life.

Last July Regina had an MRI confirming that her tumors were growing again, and there were no more options, it was time to lay down her sword.

Regina and her mother came to stay with us for a short visit in July before the bad MRI, but we suspected it. Like Kyra, she started losing the use of her right side.

In the last two months, watching Regina gradually decline, I've remembered things about Kyra that I never even knew I'd forgotten, things locked away for well over a decade.

I shot video of Kyra's memorial service back in February 1996 and I've never watched it, it's sitting in the box we packed up when we evacuated our house for the San Diego fires almost two years ago.

Like Scrooge, I am haunted, by the ghosts of past, present, and yet-to-come.

Nobody thought Regina would be here for long after treatment ceased. Regina's tenth birthday was September 19, nobody thought it would be that long.

Regina told her mom she wanted a party, but at that point she wasn't able to get up and was sleeping most of every day.

So her mom threw together an impromptu birthday breakfast on September 2 and Regina made an appearance. Then she was carried back up to her parents' bed where she received visitors.

Defying all predictions, Regina made it to her birthday. The next morning, shortly after everyone was up and about, she passed from this world to the next, peacefully at home.

Regina's services are on Monday at Saddleback Church,. I have been trying to put together a remembrance of Regina for her services, so difficult to put into proper words what for me right now could more honestly be expressed as tears, screams and curses.

What a perfect day to memorialize Regina's time on earth, it coincides with the day that Chilis Restaurants donates 100% of their profits to St. Jude.Regina loved eating at Chili's, and we celebrated Regina's 6th birthday party there, timed to coincide with the St. Jude fundraiser.

Join us in lighting a candle for Regina.

From the bottom of our hearts to the tips of the stars...

- Kathleen



Blogger K.M. Camiolo said...

Kathy, I'm just so sorry...

tears and sorry and ugh, my heart is with you guys today.

it hurts every time.

Kristin, G&R's mom

September 28, 2009 12:01 PM  

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