We were in the Hem/onc clinic again yesterday for Julia’s lab check. The procedure is quick and painless … for most … but it sets fear in my sould each month. I am guessing Julia is feeling the same way because she promptly passed out after the fingerstick and blood draw. Yup. Green, pale and gray … then slid right out of her chair. So the visit ended up a bit longer than necessary. Sorry to our fab nurses who are  never anything but supportive and nurturing to my baby girl, while secretly rolling their eyes and giggling with me at the obsurdity of this. After 5 years of daily and weekly chemo, lumbar punctures, IVs, port accesses and bone marrow aspirations … finger sticks have pushed her over the edge.

Well all of this was worth the drama when Jen called with her PERFECT results! Yes! It has been 15 1/2 months since Julia completed treatment and she remains CANCER FREE!

Off to the pool to celebrate!

Peace,

Kathy

So Friday evening came and we were dressed and ready in our pink dresses to go pay our respects to Julia’s friend and her family. This would have been her first wake and funeral and I know she didn’t know what to expect. We discussed it over and over again. Sometimes with tears, sometimes with giggles and always with her heart on her sleeve. When it came time to leave oour house she looked at me and said, “Will Ellie know if I don’t go tonight Mom?”  ”She will know honey, but she won’t be disappointed. As long as you think of her and the memories you have together, you are still paying her respect.” What else is there to say?

She wore pink all weekend though, as she reminded me time and again, she really doesn’t like pink anymore. She wrote a speech that she will read at a memorial service at Camp Care next month and then decided that she would attend her friend’s birthday party because she knows that’s what she would want Ellie to do if it was her.

So that is the update of how Julia is dealing with losing another friend to cancer at the ripe old age of 8 years and 1 month old.It gets more difficult as she matures and as the numbers keep climbing. It is a horrible feeling of loss when you see children dying and no one able to stop the madness!

Julia has a clinic appointment tomorrow  morning and we wait with baited breath for the blood results as we always do because we know there is a chance it could be our child next. How do you possibly make this okay and right in the world?

Hello friends and readers. It has been a while since I have updated here, but the end of school and a fabulous trip to our Hometown in New York have kept me away from the keyboard. I would love to tell you in  detail about our Excellent Adventure, but that will wait until another day.

Today I am writing to say goodbye to one of Julia’s dear friends and fellow cancer warrior, Ellie. Yet another angel has joined the ranks of those that have gone before us and obviously, at eight years old, entirely too soon.

How old were you when you lost your first friend? or loved one? Me? I was 10 when my Nana passed and I know how that rocked me to my core. It was my grandmother though and that is the way nature intends it to be. Oldest to youngest. The loss of my dad when I was 26 and my husband when I was 29 were the first devastating losses I suffered. Hard enough to live through … barely. Yet my daughter has lost too many friends to count and she is EIGHT! It rips at my heart and hurts my soul in ways you can only imagine.

So it was with much dread, angst and grief that I approached her to tell her about Ellie. How do you break this news? Why can we not protect our children … all of our children? This should not b happening to babies!

After I told her I had some news about Ellie she looked at me with two big tears running down her face. She knew before I told her. “But Mommy she is going to camp with me in a few weeks! How can I go without my friend?!” I am sick. “Well Jules, Ellie will be there with you for sure, just not in the way we were hoping.” She resolved there and then that she would be doing something special for Ellie and her other friends when she got to Camp Care next month.

She also enlightened me on a game she had taught her friends to play while in 1st and 2nd grade. “All I have to do is think of something special and it goes straight to Heaven. Right now I am sending Ellie a trampoline.” Apparently she and her friends started this when she lost a friend a while back. Krista was her buddy in NY and they went through the first year of Hell … err… treatment together. She told me they used to send great presents to their friends and family in Heaven and, “Mom, Jenna Grace even sent Christmas Trees!”

I can’t argue with the love and heart of a child and I think I  love her game. I am ashamed, however, that I never knew about it until now and shudder that though this is a great coping skill, that my baby ever needed to come up with it to begin with.

Tonight as we put on our pink dresses to say goodbye to our friend, we will be wishing and sending her ocean breezes, seagulls and clean beaches. Pretty great, huh?

Peace,

Kathy

Eight years ago today I prepared for the delivery of my 3rd and last child. My first and only daughter. Two years ago today we prepared to take that same child off a ventilator to see if she could breathe on her own. Today we are preparing for her first Slumber Party. Gratitude doesn’t begin to describe the mood of the day. ♥

It has been a wonderful time the last week or so. I had a blessed Mother’s Day with my children, a great conversation with my stepson and the sun shone bright all day on the strawberry fields as we picked 15 pounds of berries that were gone, with the help of the neighborhood kids, in 3 days. I have found a new revived spirit in my work and am beginning a journey that seems I was put here to do. My husband seems to love me more than ever and I am surrounded by amazing people in my life both near and far.
I came here to tell you this because usually I am asking for an ear to bend or company in my pity party. Figure when things are good I need to share as much as I do when things are bad!

Yesterday was a biggy here. Julia and I went for her first mani/pedi and I didn’t have to be neurotic about the germs!  She has done the Sweet and Sassy and Bibbity Bobbity Boutique type of nails before but this was her first foot soaking, hands wrapped in plastic, massage chair spa treatment ever. I knew she would be thrilled but I was not ready for the extreme SILENCE! She did not utter a word the entire time! I think she was just saoking it all in and was just grinning through it all. Made my heart swell!

Then I went off to a Mother/Son Sports Jam with Greg. What can I say? Off we went with matching Carolina Panthers attire and enjoyed the 90+ degree heat. I have to admit I sweat more that evening than I did earlier that day at the Y! He had a FANTASTIC time though and it was worth every second of  the sweltering heat. This morning he nonchalantly looks at me over his breakfast and says, “Mom, why is it I love you so much?” When I just looked at him and smiled,  he shrugged, “Hmmmph, guess it’s just one of life’s big mysteries huh?”  How could I not love this kid?!

Thomas is having a big moment tonight too. He and his “12 in 4 days” grown up self is babysitting tonight for the first time. Cellphone will be next to me all night with our number on speed dial for sure! I wonder if he will call for a rescue from me sooner rather than later?

How did we get here so fast?! Can you believe how fast the years are going? Doesn’t it seem like just yesterday we were …. well … younger?! As the prom, graduation and birthday pictures of my godchildren, neices and nephews roll in I can’t help but wonder how they keep growing up and I still haven’t!

Have a great day and please take a moment to check out our new organization, Julia’s Rainbow and if you are on Facebook (and who isn’t anymore) please join our page athttp://www.facebook.com/pages/Julias-Rainbow-Fund/110275019015856  .

Peace,

K