Archive for the ‘Childhood Cancer Awareness’ Category

This a quick post to inform you all that Julia’s Rainbow Fund is up and running! We were off to a limping start when our website wouldn’t accept donations, but I believe that is repaired tonight. Please click over and see what you think. We are hoping to help in several ways in the fight against pediatric cancer.

We are also on Facebook at http://www.facebook.com/pages/Julias-Rainbow-Fund/110275019015856?ref=ts

Our goal is to Encourage the families, Support the kids and of course above all … Find a cure! Please help us to help them! Thank you from the bottom of my heart.

Peace,

K

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

So it’s been awhile since I have updated here. This was somewhat intentional as too many things were hanging in the air and I decided to step back and wait before putting it all out there. I know … so unlike me. Anyway, all is well and we have made it through yet another stressful time as a family.

Julia, let me say right away, is fabulous! She is enjoying her good health by running around the neighborhood with all the kids and finishing up 2nd grade. We were at the clinic last Monday and as an early and priceless, Mother’s Day gift, we were told her blood work is still great and she remains cancer free! That is now a 14 month stretch and I am relieved beyond words. Whew!

As for me, I had a false alarm with an abnormal EKG and was told I had an MI. I thought for sure I would know if I suffered a heart attack but sure enough, as soon as I got this news I was short of breath and was always feeling tightness. Well, after wearing a monitor for 2 weeks, getting an echocardiogram and a stress test, I got a clean bill of health from my cardiologist. Again, I am unbelievably relieved! On with life … everything is fine!

The next two weeks are full of Paying it Forward events for me and my family. On May 22nd our neighbors are hosting a 5k Family Fun Event in order to help a dear friend and her family who are struggling with health issues with their 3 1/2 year old son. Matthew has an extremely rare brain tumor that has caused him to battle delays in developement and at one point suffered up to 400 seizures A DAY! He has endured several brain surgeries with more on the horizon. Please, take a look at his website we set up for them and consider what you can do to help this family get through another month of bills that keep climbing! http://www.miraclesformatthew.webs.com/

I am also so excited about getting Julia’s Rainbow Fund up and running and will be holding our first fundraiser in the next few weeks. I hate that there are so many new families joining the battle against pediatric cancer, but I cannot stand by and watch them struggle alone. Please help us to help them. We are trying to change this nightmare one family at a time and one heartbreak at a time. Our struggle cannot have been for nothing.

As always, thanks for everything! Thank you especially to my children who have  made this Mother’s Day a special one for me. We enjoyed a great day of Strawberry Picking, Strawberry Cleaning and Strawberry Eating! I am so hopeful that this generation (my kids and I) will finally break the cycle of dysfunction that has been the family legacy and that when they are adults they are still celebrating Mother’s Day with their families together …. and I hope I am there!

Love, peace and gratitude,

K

Thank you! For those that continued to read on in my post last week, you saw that I was pretty blunt about having a difficult time dealing with the aftermath of all the hoopla that surrounded my family these past few years. It has not been easy to acclimate to “normalcy” post cancer while still having it hang over our home and while gearing up to get my middle guy through the difficult grades at school…. which by the way, is everything past 3rd!

I had hit a brick wall and was sad that life took me on a path I really would never have chose for myself. I wanted to stamp my feet and cry … IT JUST IS NOT FAIR!

I still agree, it isn’t fair. This weekend though, I received so much support and love via messages, emails, calls and visits. My possee also got to head out and spend time with friends and enjoy a weekend party of laughter, wine and silliness. There really is a reason we are on our paths through our journeys …

Thanks friends. No promises here that I won’t bitch again, but I have always known what is important … sometimes I just need a refresher!

XOXOXOXO
K