On Friday, January 14, 2011, our only child, Madeleine James, was in school, enjoying her kindergarten lessons at St. Anne and playing on the playground with all of her friends.
Two days later, on Sunday morning, January 16th, we were told Maddie was going to die.
Collie and I had noticed that Maddie was more tired than usual since returning to school after the holiday break, and her balance appeared a little off. But, in general, Maddie remained the happy, spirited, funny, and bright little girl she had always been.
Saturday, January 15th, I took her to Irvine for a “snow day” in the park with my brother and his family. Something wasn’t right. I just felt it. I took her into Kids Doc, a weekend urgent care clinic, and with the go ahead from our pediatrician, we were sent to the emergency room at the Children’s Hospital of Orange County (CHOC). I called Collie, Maddie’s father, and he met me at the hospital immediately. Maddie had a CT scan that night.
Maddie was diagnosed with a malignant, inoperable brain tumor known as Diffuse Intrinsic Pontine Glioma, or DIPG. Located on the brain stem where the spinal cord meets the brain, it is the most feared pediatric brain tumor. There is no cure, and, after nearly a century of study, modern medicine has only been able to stretch life expectancy after diagnosis a matter of weeks. Our incredible medical team prepared us for the rapid progression of the disease, with deterioration in her ability to walk appearing within weeks followed by a steady loss of motor control throughout the body. Our only solace was that it was a disease that did not typically cause significant pain.
But nothing could change the fact that the survival rate is 0%.
I can’t properly describe to you those few days in the hospital: My sister forcing me to finally take a shower; holding me up in the warm water so I didn’t collapse; giving me the clean clothes off her back to wear. Telling my brother the horrific news and having to physically restrain him from punching a hole in the teddy bear-wallpapered ICU hallway. Collie having to call and tell his parents in Australia that they were going to lose their only granddaughter. The same call he had to make four years ago when he had to call and tell them they had just lost their only daughter.
We have never felt so not in control in our lives. While still in the hospital, we came to the conclusion that there were two things we could control; making sure the precious time we had left with Maddie was lived to the fullest and making sure we did something to properly honor her. To somehow make something positive out of this. Even though Collie and I have been separated for a year and a half, we were immediately one again in these two purposes. We instantly agreed that I should move back into the house so we can spend this precious time together as a family. Collie and I have since shared many laughs over this crazy living arrangement. But we both agreed on this: Nothing else matters except for this time we have left with our daughter.
The Ocean Institute in Dana Point is the first place that came to mind. Maddie loves the sea and all its many amazing creatures and attended sea camp there in August 2009. She has often spoken about her teachers there and that it was the best place ever. She saved every name tag from her time at camp. We had absolutely no idea they were planning the expansion explained in detail here, an expansion centered on an educational center for children like Maddie who are fascinated by life under the waves. Like many, many things that have been happening these past weeks, I don’t see this as a coincidence. Our mission was clear.
And it became even more clear when Maddie saw me looking at the plans and asked what they were. I told her, and she exclaimed, “That’s so cool, mommy. Are we going to help them build it?” With all my heart, I responded, “Yes, Maddie, we are.”
So, this is us, on our hands and knees, begging you to donate whatever you can, to spread the word on facebook, your blog, at your school, your church, etc. Please help us make sure Maddie lives on forever.
- Kajsa James
On Friday Night March 13th at 10 PM the call came that we all were dreading Maddie has passed. Like a knife those words tore through our heart. We cried, and cried. Later her daddy Collie posted this message...
Dear Family and Friends,
It is with great sadness that Kajsa and I have to inform you that our dear, sweet Maddie has passed away and is now an angel in Heaven. She died at 9 pm on Sunday evening, March 13, 2011. Kajsa sang her the night night songs she has sung to her since birth and kissed her on the cheek, and Maddie took her last breath. We were right beside her.
While we hoped we would have more time with her, we are grateful that she died peacefully in her sleep at home. She experienced no pain and no fear. For that, we are eternally grateful. We will miss her with all our heart and soul, but feel so privileged to have had the incredible honor of being this amazing girl's parents. She was the most beautiful, funny, intelligent and warm-hearted person we have ever known.
We will be in touch soon with plans for the service in celebration of her life. Details will follow, but it will take place on Sunday, March 20, 2011, @ 5:00 PM in Dana Point overlooking Dana Point Harbor and the Ocean Institute.
Thank you all for your incredible love and support throughout this difficult time.
Please join us in celebrating the life of our beloved daughter, Madeleine Reese James.
Sunday, March 20 @ 5:00 pm
Heritage Park
34400 Old Golden Lantern Road
Dana Point, CA
If you would ask Maddie her favorite color she would say, “I love every color of the rainbow.” So, wear whatever you want, just make sure it isn’t black. Keep it casual, bring a blanket and/or beach chairs, as you will be sitting in the grass.
We leave it to your discretion on if you would like your children to attend.
In lieu of flowers, please consider a donation to www.maddiejamesfoundation.org
We love you.
Collie
