Category: pediatric cancer facts

giving tuesday

Our country has been in such turmoil since the recent elections. Emotions are running high and strong. . Marching in the street to protest or to celebrate. Liberal or Conservative, Clinton or Trump.. The overarching thing I see is that people care. People are invested and they are hopeful. People are scared, they are worried for themselves and their communities.. I get it. In a different kind of way. I get it. I think thats kinda my life all the time now too.. I have moments of great hope. When I see success when I see change is coming and happening. I have moments of great fear. Worried for childhood cancer to take up residence in my home again.. Fear that all this effort will never make a difference. Heartbroken over the everyday loss of life. 100 – 140. That’s how many parents have kissed their child for the last time[…]

guns, gorillas and gators

Our nation… Our country. There is a lot of sadness swirling around us. I have a multitude of thoughts about it all. Likely much of it isn’t popular opinion. But my goal isn’t to be popular is it? So many recently have joined my ranks of becoming bereaved parents… but from all different sources. Guns. Gorillas. Hot cars.  Alligators. I have 2 overarching thoughts on it all. The anger. The outrage. I get it. I have it to. But I am also so jealous, jealous that people seem to care more about these deaths. That not enough people seem to care about the 7 today that will die from cancer. The 7 tomorrow that are being slowly tortured and killed. I get it. Its not sensational. Because it IS so constant. Because is ISN’T slowing down. Logically I understand why its not newsworthy… Until it’s YOUR news. Your child. Your[…]

my role

Everybody has a skill a talent.. something that is special and unique about them. A way for them to give back..Everybody has a story to tell and I am able to tell my publicly. .. But at the center of it.. My truest calling.. now. I am a cancer mom.. but specifically one to a child that was on hospice and died.. one that is dead. And that’s where I am most useful. That’s where I can help.. it is my role and my place in this world.   At first it was parents with teenagers that were really screwing off.. I could talk to them from the child’s point of view.. I could share my story and my success in overcoming it. Then it became  infertility and adoption. I used to be good at talking to people and helping them through those darker times.. especially transition times.. during a[…]

the difference a year makes

A year ago people woke up to this posting. .. This picture still makes me my hands and feet go dumb when I look at it. ..It makes the blood pound in my ears. .. Yesterday 7 children died from cancer. ….my child wasn’t one of them. Today 7 children will die from cancer. My daughter is one of them. She gifted me her first and her last breath. . . and so many beautiful ones in between.     Everybody that loves Jennifer has different “last perfect days” But a year ago was mine. 2/12/14. I know that’s hard to understand. But February 12th was the last day I held my daughter. It was the last time I felt her heartbeat under my hand. And those hours leading up to her death were beyond words. The connection I felt with her was the deepest most fulfilling relationship I have experienced.[…]

it falls to them

I woke up this morning and the ache… the hole in my heart and my life was palpable. I have cried often I have cried hard today. My boys and I painted rocks with nail polish to take to her. They seem to have a want and a need to go daily right now. And then they wanted to paint their nails.. to paint my nails. Jonathan knows just what to do.. exactly the way I used to do it with his big sister. Its been well over a year since he has seen that happen. But he remembered.. I was happy and I was devastated. That’s me. One giant walking contradiction. One giant ball of dueling emotions. So often feeling depleted of any true emotion but feeling such tenderness for my surviving 3. I feel like I cannot wait to die.. to get to be with my Jennifer again[…]

guide

I am still me.. but never ever really the same. I went to a MOPS group this morning. I was at a table with some ladies I knew.. and some I didn’t. ok cool. It started with a ice breaker.. we just took turns sharing a little bit about ourselves.  nailed it. Then the video came on. The topic was what is your worst mom nightmare. oh crap.  As our table shared I got to speak initially with another mom about my before cancer mom life experience. I got to share the same way I used to about my experiences.. my success and failures. I loved it. It was so nice to just be a mom of 4 kids again… for a moment. Until it was my turn to share my worst mom nightmare.. So I shared. My worst fear did in fact come true. I have always been scared to lose a[…]

the heart of it

You ever look back and wonder.. wonder if on some level you knew your whole life story ahead of time? There are moments since all of this I have done that. I wrote about it here .. about the signs I had seen along the way. Now too. How I look around and Jennifer is all over our home. Not just the new things.. the things we have added since she died, but so many places before she was even sick. Much more than the other kids.. I just never noticed it. But it makes it easier for me now. I like to make memories with her in the background. Every conversation I have.. Every new memory I make she is there.. in some way I there is a visual presence of her there. And my all time favorite Christmas song. It has always made me pause. Made me stop.[…]

what she said

I am not alone in this. So much of what I feel other parents are also feeling. This is what my friend Kristine wrote on the McKenna Claire Foundations FB page yesterday “We are on a major organizational binge at our house. Our life has been chaos since the day McKenna was diagnosed, which will be 4 years in January. I was cleaning out bags of “stuff” that have been piled in corners of closets or dressers. What I found this morning is what you see pictured above. This was McKenna’s final Mother’s Day gift to me. It was not lost on me thatit was covered in butterflies and that the gift itself was a blue butterfly keychain. What undid me was what she wrote on the back. Reading her words, written in her shaky post-tumor writing, brought back every ounce of the hopelessness, guilt, and pain that I have[…]

i did this

Everything is different for us. Its not just that we lost our daughter we lost ourselves too. All the old rules have been re-written. And underneath that new writing there is always a ache.. the pain that we didn’t want things to change. No, honestly, we were all really happy with how things were. But then our 6 year old got an oncologist. .. and then a headstone. Jennifer. This was never supposed to happen. Everything is different. My kids cry and yell or act up. .. and I question how to handle it.. If I should simply give them a consequence or is it their grief manifesting itself. They lost the mom I once was.. the mom I should have been.  Unintended consequence of our battle with infertility. I really appreciated being a mom. A wife too. I was a really good homemaker. .. and I loved it. So[…]

my hero

Veterans day. A day honoring those that have fought to keep us safe. Those that walked into battle for the betterment of the rest of us. The brave. Heroes. I can’t help it.. I don’t want to do it.. But all I can think is her. My Jennifer showed more strength and fight then I have ever seen in another human being. She didn’t want to die. . so she held on.. And fought for every moment and every breath. Cancer slowly took her.. stole her away.. And when she was gone she donated the beast inside her to save others. Her little body already endured so much.. but she still donated of herself .. 3 successful types of cell lines. And I get mad. Its not cancer that stole her. Its the lacking of resources for those trying to find a cure… For her cancer, DIPG, even just a[…]