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The Whiplash Effect

he juxtaposition of feelings with a a loss this great is almost like managing another full time job. I have to maintain my own whiplash day & night. In any given day, hour or minute, really, I can feel peace and gut-wrenching guilt. I can feel like I will never smile again, then realize I’m breaking into a grin over a memory or vision of my girl. I can cry and laugh in the same sentence and sleep soundly and toss and turn in one night.

We have talked about running away. Escape to another state, another existence. Drive cross country, see anything other than the four walls of our home and take off for adventures beyond once we reach the California coast. We want to do all of the things Katie never got the chance to do. But we could never escape this pain and it would follow us like our own personal rain cloud. Coming home to an empty home would be just as painful in an hour or 6 months from now.

The absolute last place in the world I want to be is in the biting cold, deep snow cemetery, yet I’m anxious as all hell for them to plow so we can get in to sit with her. To visit and tell her, as close as we can physically be, that we love her. I cry in her room at the very sight of her sweet things and smell of her yet want to be in there more than anywhere else in our home. I want to be anywhere she was – sit in her favorite spot, eat dinner at her spot at the table. I wish I could put her clothes ON just to be close to her. But then, I want to hide any evidence of her because the sight of her toys…her coats…her little shoes…it is all just too much to take in. WHERE IS SHE? WHY ISN’T SHE HERE? But oh….to put away those signs would be like she never existed. And boy did she EVER exist.

Katertot, Kit Kat, Katie Girl, doodle bug…you are my once and forever true love and there is not one second that goes by that you aren’t on my mind and in my heart. You are my favorite person in the WORLD and I love you beyond the moon and all the stars. Please don’t ever forget how very proud we are of you, how very much you are loved and how deeply and painfully you are missed. Yet for all of the pain and suffering we feel now, there is not one second I would have traded for your remarkable, extraordinary life.

11 Days…Since

It has been eleven days. This morning at exactly 5:37am, I woke. The moment she took her last breath eleven days ago, I woke. Why, do you suppose? Was that her? What was she trying to tell me? I’m struggling to find her and feel her.

She has visited dozens of my friends as the sly fox she has shown herself to be. But not to me. Not to Mike. Why is that? Why won’t she come? She loved the snow and is getting a kick out of this storm, but that does not bring me peace. It makes me mad. She should be HERE enjoying it. Not sending it for us to reflect on her. I want my friends to enjoy their kids in this wonderland, but I WANT TO ENJOY HER TOO.

Continue reading “11 Days…Since”

Our Dearest Darling Kate

I’ve been trying to blog this today but our website isn’t cooperating. Many have asked for us to share our letter to Kate and I am honored that so many have requested to re-read it. It was written about an hour after we got home from the hospital after Kate passed. I climbed into her bed and let the words and tears flow thinking about what I would say to her if I had one more chance.

Thank you is totally inadequate to say to thank our amazing krew for supporting us. Today and always.

Continue reading “Our Dearest Darling Kate”

ARCHIVE: Silly Ramblings from a Crazy Momma (and what comes next for Kate)

The last four months have been a whirlwind of activity, celebration, firsts and fun. It all started in late August with Kate’s first trip to the beach for a long weekend with family. Continue reading “ARCHIVE: Silly Ramblings from a Crazy Momma (and what comes next for Kate)”

EOT!

Friends…today has been a celebration of gold, sparkles, prizes, happy smiles and friends. We shared in the joy of “no more chemo” with our nurses, doctors and a few clinic friends who are VERY special to us (two of whom were experiencing special “lasts” of their own!)

Today, Kate received her last “on treatment” blood draw and her last chemo…a methotrexate shot. It was celebratory and wonderful, but I want to share with you just exactly WHAT we are celebrating the end OF.
“No More Chemo” sounds awesome in EVERY way, but particularly when it is all added up.

Days on treatment:760 (half of her life)
Days in the hospital: 23
ER visits: 3
Methotrexate doses (chemo): 92
High Dose Methotrexate doses (chemo): 1 (required hospitalization)
6mp doses (chemo): 490
Cycles: 36 (1 induction, 11 consolidation and 24 maintenance)
Steroid doses: 414 (207 days)
Vincristine doses (chemo): 39
Doxorubicin/Zinicard doses (chemo): 10
Oncaspar doses (chemo): 30 over 15 weeks
Bone marrow biopsies: 2
Blood transfusions: 4
Platelet transfusions: 3
Surgeries: 2

This was, as we were told, the “easy” cancer. Make no mistake, nothing about this was easy. And yet…there are kids on treatment with numbers that surpass ours by HUNDREDS. As we end our journey and look forward to our next, please keep our other friends in your hearts and prayers that more than 4% is offered to our kids…for better and less harsh treatment and for a cure. Our kids deserve #morethan4.

Thank you, Kate’s Krew. From the bottom of our hearts. Thank you.

ARCHIVE: A frustrating “state of the union”

Katie Cutie with her GangSigh. We are so close. SO CLOSE to the end. We have less than 7 months left until Kate’s end of treatment date and that feels so damn good. It’s so close we can see it, count it down and very nearly feel it in our grasp. But it is too damn far off to feel REAL. It isn’t close ENOUGH. Continue reading “ARCHIVE: A frustrating “state of the union””

ARCHIVE: #12

We’ve been radio silent over here lately…busy living life and enjoying the holidays. I’m interrupting this silence to pay a special tribute to a personal hero of mine…the MVP #12. Beautiful Mathias.

There are many perfectly written posts, Facebook messages and tributes being made to this remarkable young man, who left this world tragically too soon this past Sunday. There are hundreds of great things to say about him and every one of them is true. This 13 year old changed me…changed how I wanted to live. Made me want to be a better person and citizen of this brutifal life. He was special ya’ll. He was put on this earth for greatness. Continue reading “ARCHIVE: #12”

ARCHIVE: The Countdown

Kate recovering in the hospital after her bone marrow biopsy confirming that she was in remission, September 16, 2013.
Kate recovering in the hospital after her bone marrow biopsy confirming that she was in remission, September 16, 2013.

I cannot believe we are here. (No, really…I cannot believe it.)  Today, we are celebrating the ONE YEAR anniversary of Kate’s remission. (!!)  It also begins the one year countdown until the end of treatment. END OF TREATMENT, PEOPLE! (I hear Dr. D groaning at me…she doesn’t like for me to get ahead of myself.) But still, how could we NOT celebrate this day??? Continue reading “ARCHIVE: The Countdown”

ARCHIVE: Golden

gold ribbon for childhood cancer awarenessI told my mom yesterday that a blog post was forming. That I couldn’t concentrate because so many thoughts were spinning around in my head…I just needed to WRITE. But I can’t. I have nothing to put down in a blog that conveys the profound sadness I feel over losing yet another beautiful young soul to this terrible disease called cancer. Continue reading “ARCHIVE: Golden”