Tag: childhood cancer

nano course

I was invited to this thing called a nano course here at Stanford. Its a small invite only week long conference. The basic idea is to train some parents/foundation people to be liaisons for the medical community. What that means is much of what I was taught went over my head!! Some easy take aways I can share now ..  A lot of the stuff we learned wasn’t specific to childhood cancer.. but translated to all cancers. Like a 3D gel that can mimic tissue better than other mediums. .. a big step up from a petri dish, but more accessible than a animal model. The head of that lab was so jazzed and into it. It was pretty remarkable to see. That leads me to my next easy take away. There are so many cogs in this machine. We heard from multiple different heads of labs. That are all[…]

Tahoe in pictures

We had a good trip. I think in part because I did so much hard grieving before we left. The 3 days leading up to the trip were pretty miserable for me … and in turn my kids and husband. My family drives my bonkers sometimes. I get my feelings hurt.. and I am sure I hurt feelings in return.But my biggest take away from the trip… I love my family so very much and they love me.. my husband and my babies. All 4 of them.  If we can raise my 3 living to be the kids, teens and young adults my nephews/nieces are .. well then I will consider it a job very well done. I just wish that my Jennifer could have been given the opportunity to grow with this incredible mix of people. She would have learned so much.. and I believe taught us so much.[…]

…but she is

I find myself back to a place where I have a longing for my nights to come and write. I don’t know if I am in a transitional period or if it is just a hard spot for me right now. I am brimming with emotions lately.. anger and sadness.. and a sharp desperate ache for my Jennifer. I have prayed a lot lately. Constantly talking to God, just walking out to the garage to grab a  bottle of juice I speak to Him. I ask for help.. . Sometimes its unbelievable to me. .. how I can feel so mad at Him on one hand .. yet still closer to Him than I have ever been. I know heaven is real. I know this isn’t the end.. but I just get so damned scared. And so I write … I release those fears through my fingers.. and then somehow am[…]

llama llama

Memories are all I have left.. Its what us bereaved parents cling to. but when they hit unexpectedly it can be devastating. I feel like I have been hit over and over again today, and I feel so weak. I rarely leave the house to run errands anymore. Her memory seems to haunt me everywhere I go. I actually wouldn’t mind it so much if it was just me .. I have no problem crying in public.. But it just isn’t fair for my kids. ..especially on days like today when the tears were fairly constant. Turning on the car.. I hear the song we walked her down the aisle to.. The only time we will have that privilege. Even just driving in the parking lots for the grocery stores got to me today. I still haven’t been able to go into a grocery store since she died.. Today being[…]

warrior

Warrior. Warrior mom. Warrior child. It’s a badge given to cancer families in this world I am slowly becoming accustomed to. It has always felt uncomfortable.. awkward for me… I wasn’t sure why. . I just have always known Jennifer wasn’t a a warrior. She was a barely 6 yr old girl who loved to hide from her Daddy when he came home from work and then jump out to surprise him…a little girl who snored like a grown man but always denied it was her. A brown eyed beauty who truly believed in the magic of a princess.    I don’t think any of our DIPG kids are warriors really.. .I think they are more like sitting ducks. Being picked off one by one. I am angry. I wrote awhile ago how it wasn’t a fair fight for her. And I realized this feeling is just an extension of[…]

average

I had a phone call with one of the aunts of Dannys warriors. She is… they are… amazing and I think they are poised to do good things in the fight against pediatric cancer. . I heard in her a joy.. a hope.. that we lost 5 months ago. A piece of me that I miss. The part that believes in miracles. I remember it though and I will hope that they find their way to that miracle. We talked about how it was for each of our families .. 9 months 4 days ago for them and 9 months for us.. 9 months from the very last birthday that we will ever get to celebrate her turning a year older. 9 months since we learned of DIPG. . and that some childhood cancers offer no hope. 0% survival. 9 months. The average amount of time a child with DIPG gets to[…]

I am a blogger

A friend of mine encouraged me .. strongly.. to go to a blogging conference. Who even knew things like that existed! It really helped me to clarify my focus and my goals. I want to speak her name. Hear others speak her name and galvanize efforts to save kids from toxic treatments and parents from joining my ranks. 7 today lose their son or daughter to cancer. It was both scary and energizing to walk up to groups of people and introduce myself. I always tried to have them share their blog/story first since my seemed to be a conversation changer. Although that was hard.. I did what I always seem to do.. and I imagined what it will be like in 2 yrs. To say my daughter has been gone 2 yrs from a brain tumor no survival. .. it will hopefully still have a impact but not the[…]

deserve

I am sitting down with plans to write about our fluttering awareness/fundraiser.. but I can’t.. there are some other things that are weighting me down.. S0 I will do what I do.. I will write and see where my fingers take me.. I am changed now.. I literally feel differently now since it hit me that she has cancer. Writing this post. literally changed me .  It took over 8 months for it to truly hit me.. and it has just deepened my resolve to want to do something.  Its just a terrible feeling I am struggling with right now.. I just miss her. And I want to make her death count for something and I don’t know how to do it. I don’t know how to reach people.. how to make us/her and most importantly the facts get out there. I just want to make it so kids stop dying from this[…]

dreams vs nightmares

I am a jumble of stuff.. of emotions.. of thoughts.. Today I said to a friend “…taking care of 4 young kids.. ” then I stopped myself. I had to brace myself. Grip the edge of the kitchen counter to keep from doing what I wanted to do.. what my body was trying to do. crumble And then my friend said “you are. You are completely still a mom of 4 young kids.” And so we talked about it. How in so many ways my mind and heart are overcome with her more now than they were when she was alive. I fear sleep now. I had my second dream of her that I remember. .. dream.. i wish I so desperately want her to come to me in my dreams. But not like this.. I want her freed from the nightmare images. I want her different than the ones I can’t erase[…]

my heaven

Sometimes memories surprise me.. coming out of nowhere.. and sometimes they haunt me and I cannot let them go. The other day I was driving to the post office, I realized I was on the drive I took daily to take her to kindergarten. . I used to go straight at the corner to get to her school… this time though I turned right to get to the post office to open a po box for a company I never wanted to start. Its right across the street from where her remains are now.. Just waiting for us to get her to bury her. I imagined running across the street and barreling through the door.. screaming her name. I thought a lot about her Make A Wish trip and the guilt I have attached to it. How I feel like maybe she would have chosen something different. I helped them[…]