Maddie: A Story of Courage and Heart

I clearly remember when I found out my good friend Kajsa was pregnant. A small group of us were gathered at her house in Laguna Beach, planning on having a few drinks before heading out for the night. Kajsa was drinking her beer out of a glass and I thought to myself, “That’s fancy; she usually drinks her Bud Light out of the bottle.” But after the rest of us had our drinks in hand she made the announcement—Kajsa was pregnant. (She was drinking a non-alcoholic beer out of that glass and didn’t want us to know, the tricky girl.) After months and months of fertility treatments, to say that we were ecstatic is putting it mildly. Especially since her pregnancy happened naturally. A short while later, three more of us became pregnant, and BAM! we had a playgroup.

The first year of our kiddos lives, Kajsa, Alison, April and I met at least once a week. I don’t know how I could have made it through those first months of motherhood without them. Our children, Maddie, Luke, Finley and Kieran became best buddies. We would rarely do an outing without at least another of us joining. As the kids grew, schedules became busier, and though we didn’t have the time to meet once a week, we did make a point to get together somewhat regularly and have the kids play while we chatted, vented, laughed and cried. You know, regular motherhood stuff.

This past Friday, January 14 was such a time. My son, Kieran, hadn’t seen Maddie in six weeks, and I hadn’t seen Kajsa in a month, so we wanted to have them over. They came to our house for dinner—the kids played with Play Dough, looked at what Kieran had received for Christmas, and then Maddie commented that she was tired and wanted to know if she could watch television and rest. Not something a five-year-old usually says. Kajsa commented that Maddie had been extremely tired during the previous days—falling asleep in unusual places and going to bed at 6:30 PM. She chalked it up to having a big week at school, but had taken her in for blood tests a couple days prior to make sure. Nothing unusual showed up.

While they were over, Kajsa noticed that Maddie was walking a bit “off-balance.” Because Maddie wears glasses, Kajsa would ask her, “Can you see okay?” And Maddie would reply yes, and be on her way to play with Kieran. My husband noticed Maddie seemed to have a limp and asked me about it after they left—I said that Kajsa hadn’t mentioned Maddie getting hurt. We put it out of our minds, only thinking it was a fun start to an extended weekend.

So you can imagine my shock when I woke up Sunday morning, January 16 to read the following email:

“Maddie is in the ICU at CHOC in Orange. I had noticed her becoming increasingly off balance and having trouble walking straight the last few days, and today her speech became slurred.  I took her to urgent care and then she was admitted here.

A cat scan has detected a sizable mass on her brain. That is all that we know right now, and an MRI / meeting with a neurosurgeon in the morning will give us a much better idea of what we are dealing with. She is resting comfortably and isn’t in any pain.”

Having once been in Kajsa’s shoes, I sympathized and tried not to panic. My first thoughts were, “This doesn’t necessarily have to be cancer. We’ll help her get through this. We’ll think positively. We’ll be playing together soon.”

A second email followed some hours later. A portion of it read:

“There is no easy way to say this and I can’t believe I am writing these words, but our sweet Maddie has been diagnosed with an inoperable, malignant brain tumor called DIPG [Diffuse Intrinsic Pontine Glioma]. Our doctor has prepared us for the incurable and aggressive nature of the disease. We are talking months, with a rapid decrease in motor skills, ability to walk, etc within weeks.”

After reading this, I became numb. The tears, which had been flowing all morning, were now going nonstop. I felt as though I had been punched in the stomach. Now, I no longer knew what Kajsa was going through and I didn’t know what I could do, though all I wanted to do was take away her pain.

Maddie was given six months to live.

Today, five weeks later, the “aggressive nature of the disease” is shockingly evident. Maddie’s parents, are spending every moment with their daughter and making all the memories they can, which has included a trip to Hawaii to snorkel, backstage tours at Long Beach, CA’s Aquarium of the Pacific, Sea World, and the Ocean Institute in Dana Point, CA—all having to do with what Maddie loves—the ocean and sea life.

As for me, I’m still at a loss of how I can help. I can’t take away the pain, I can’t make it better and I can’t go back to January 14. But what I can do is get the word out about the Maddie James Foundation. Maddie’s parents, Kajsa and Collie, have established a foundation in which money raised will go to the Ocean Institute, a place that Maddie loves with all of her heart. The foundation’s website says it best:

“One of Maddie’s favorite places in this world is the Ocean Institute in Dana Point.  This past summer, she attended their Sea Camp, and it was the best week ever.  She would get a name tag every morning at check-in, and to this day, every single name tag she received is stuck to her bedroom wall.

When the time comes, Maddie’s ashes will be spread at sea.  Her soul will be at peace, surrounded by all the animals and natural beauty she so loves.

Maddie’s parents, Collie and Kajsa, are passionate about memorializing their daughter in a way that is worthy of their very special little girl.  A place where they, and everyone who loves her, can go and remember her.  A place where other children and their families can visit and make memories and learn about the ocean and its preservation.

The Ocean Institute is in the final phase of a $4M Capital Campaign to create exciting new ocean-side programs and facilities that will complement their Ocean Education Center.  To be built right “on the water”, the planned Seaside Learning Center will introduce thousands of K-12 students and public visitors to current and emerging issues in oceanography, environmental science and maritime history.

The Seaside Learning Center project is shovel-ready and all permits are in place.  All that is missing are the necessary funds.  Depending upon success with fundraising, building is planned for summer/fall 2011.

The Maddie James Seaside Learning Center would be possible with a donation of $1,000,000. We realize this is a huge number and have no idea if we can get anywhere near it.  There are other naming opportunities in a lower donation range, but we have decided to reach for the stars (or maybe sea stars in this case) and try and raise as much money as possible.  We will do whatever we can with the funds raised to make sure Maddie’s name lives on in perpetuity at The Center.”

To make this happen, we need your help. Whether its one dollar or hundreds of dollars, every single bit will help in having Maddie’s name live on. Please help by clicking and donating here.