Sweet and spunky Madeleine James was diagnosed with an inoperable, malignant brain tumor called DIPG in January. Without delving into all of the details of this aggressive tumor, Maddie’s prognosis is grim, at best. The median overall survival of children diagnosed with DIPG is approximately 9 months, with the 18-month survival rate being less than 10%. These statistics make it one of the most devastating pediatric malignancies. Maddie’s doctors have given her 6 months.
My family has been absolutely floored by this diagnosis. Shock, disbelief, devastation, and complete anguish are a few words that come to mind. Constant worry over what this is doing to Maddie’s family; how her parents are even able to feign participation in the normal, day-to-day grind that keeps whizzing on around them regardless of their horrific new reality. I can’t imagine what they are going through, I truly can’t. And if I try, I immediately feel like weeping, punching, screaming, hyperventilating and vomiting at the same time. God, the excruciating pain they must be feeling right now. I can’t stop thinking about it.
I think of Maddie’s mom, Kajsa. As a mother, I can’t fathom the grief that has overtaken her heart. To lose a child, her only child. The child that was conceived after years of infertility struggles when it seemed like all hope of becoming pregnant was lost. The child she spent the last 5 and half years holding, raising, comforting, teaching and marveling over. Her only child. Her miracle. Her heart.
I think of my dear cousin and Maddie’s father, Collie. The way his eyes light up every single time he mentions Maddie’s name. The enormous pride and adoration he has for this child. The child he spent the last 5 and half years holding, raising, comforting, teaching and marveling over. His only child. Daddy’s girl. His heart.
I think about the intense grief Collie experienced four years ago when his sister and only sibling, Lauren, passed away unexpectedly at the age of 26. I think about the slow healing of his heart over the past four years, and whether it can withstand this ridiculously unfair and cruel blow. To lose his only sibling and now, his only child? This can’t possibly be happening. Yet, it is. I think about his parents, my aunt Katherine and uncle Collie, who are dealing with the stifling pain of losing a daughter and now, their only grandchild.
I think of Maddie’s cousins. Maddie’s aunt and uncles. Maddie’s grandparents and great-grandparents. Maddie’s neighbors, schoolmates and friends.
Most of all, I think of Maddie. I think of the incredibly bright, beautiful and talented 5-year-old that isn’t getting a chance at a healthy, long life that most children are given. To not be able to blossom into a vivacious and lovely young lady reminiscent of her godmother, Lauren.
I think of Maddie.
At this point in time, it’s so incredibly difficult to find any shred of a silver lining in all of this. Honestly, I’m not sure I ever will, but I do know that if I don’t try to help in any and every way possible, I’ll implode. Although Maddie’s parents have been going through a divorce, they have come together as a team of super powers dedicated to making every single day of Maddie’s life a day worth celebrating.
One of their CaringBridge journal entries says it best,
We have chosen to cherish every moment we have left with our beloved daughter. And, a little laughter is sometimes the only thing that helps us get through the day. We have a lifetime to deal with the grief when she is gone.
How can you help celebrate Miss Maddie’s life? Many, many ways. (And I would be remiss if I didn’t include a whoorl-worthy list.)
1. Maddie’s parents have started an amazing foundation to honor Maddie and her immense love of the ocean. You can learn all about The Maddie James Foundation here, as well as Collie and Kajsa’s hopes of creating The Maddie James Seaside Learning Center here. If you feel so inclined, please help them reach their goal by making a tax deductible donation here.
2. Visit Maddie’s CaringBridge page. Read about the special moments she is experiencing and will experience throughout the upcoming months.
3. Send Maddie and her family all of the prayers and positive thoughts you can muster. They need them more than you will ever know.
Over the past 5 years, I have witnessed firsthand the immense support you all have put forth for good friends of mine who were dealing with tragedies and challenges. For that, I am so incredibly humbled and thankful. It’s hard for me to wrap my brain around the sheer love and generosity that you have shown in the past. As you can imagine, this particular tragedy has taken hold of my heart. Watching this happen to a young family member has caused a pain that is, well, indescribable. I hope my attempts of providing you numerous ways to help haven’t come off as excessive, but I just want so desperately to help in any way that I can.
Most importantly, if only for a second, please think of Maddie and her family today. Send all the warm thoughts and prayers you can.
Lynn @ Walking With Scissors
February 7, 2011 at 11:37 amI am so very sorry that this is happening. No little one should have to go through this. I am glad your cousin and his wife are putting their issues aside to make the rest of their daughter’s days as bright and happy as possible.
Ellen
February 7, 2011 at 11:45 amsarah…i haven’t commented yet but have enjoyed reading your blog. this one hit so….so hard. tears are streaming. i am so sorry. am so sorry for your maddie’s parents. and for lovely maddie. the pics of her remind me so much of my girls, ages 4 and 6. all so blonde, my youngest in similar glasses. i just don’t understand how something like this happens…why? why?? life can be so hard. your family is in my prayers. and i WILL do something for pediatric cancer. absolutely.
Jenny
February 7, 2011 at 11:55 amThinking of your family and Madeleine’s parents and Madeleine especially and will be saying lots of prayers on their behalf.
Danielle
February 7, 2011 at 12:02 pmShe is beautiful. This is crushing.
Nicole
February 7, 2011 at 12:08 pmI don’t know what to say, and there is little I can do aside from pray for that sweet little girl and her parents who clearly love her so much.
Rafaella Rauber Kopper
February 7, 2011 at 12:08 pmShe’s an angel and I’m very sad about this news. Thinking/praying for her and family!
Kisses and love from Brazil!
Andrea
February 7, 2011 at 12:22 pmI will be praying for a miracle. And am glad she already has an angel in her corner to watch over her.
Lindsay
February 7, 2011 at 12:35 pmSarah – I read your blog faithfully and always enjoy it, though I don’t believe I have ever commented before. I am praying for Maddie, her parents, you and all of the friends and family surrounding such a special little girl at such a devastating time. Praying for strength, peace, comfort and most of all a miracle.
Sara
February 7, 2011 at 12:49 pmThis breaks my heart. My family is going thru something equally horrific, my cousin (35, non-smoker) was diagnosed last year with Stage IV lung cancer, was was recently told there was nothing more they could do for him. The thought of his four-year old son growing up without knowing his amazing father makes me weep, and the thought of his wife dealing with this horrific tragedy makes me want to hurl. Not to mention how completely unfair the whole situation is, I just want to have a temper tantrum and kick and stomp my feet. I’ll be praying for strength and peace for Maddie and her family as I pray for my cousin, Andy and his.
melinda
February 7, 2011 at 1:22 pmI was one of maddies preschool teachers, and i cant even tell you how much sadness i feel right now, i love this little girl so much, she would bright up my day and has such a beautiful fun personality and I pray God will miraculously heal this child and she will become healthy again, God is mighty to heal so please pray for her and her family.
Cindy Slusar
February 7, 2011 at 1:44 pmHello there,
A friend of mine forwarded me this link because I am helping a family in Santa Barbara raise money for their daughter who was diagnosed with DIPG this past August. I wanted to see if your two families could possibly meet (in person or via email) for support. I think knowing a family going through a rare event like this would help. Please let me know if you’d be interested in being introduced to the other family or if there is some way I can be of assistance. This story as well as the other famiy’s breaks my heart and it definitely hits home since I have a young daughter (18 months).
Sincerely,
Cindy
MissMary
February 7, 2011 at 1:48 pmMy heart just breaks for your family, for this beautiful little girl and her family that deserve to see her grow-up. Your willingness to use your site to to find anything good to make this sweet girls remaining days better and to end pediatric cancer will be an unending tribute to this beautiful girl.
BeRefinnej
February 7, 2011 at 1:56 pmI am so incredibly sorry. So, so sorry.
Kelly
February 7, 2011 at 2:06 pmI felt like an elephant was sitting on my chest the whole time I was reading this. It is beyond my scope to even begin to make sense of such pain and sorrow. My prayers will be with your family as they press on until her passing and then pick up the pieces. Thank you for your poignancy and for sharing this.
Sarah
February 7, 2011 at 2:20 pmI’m having a hard time not crying at work after reading this. My 2 and 1/2 year son, my only child after years of infertility and loss, is my whole world. Losing him is my absolute worst nightmare. I’m so sorry. I hope that they are able to spend as much time as possible with their gift.