Steadman Family

Can you believe it? Lily will be 1yr. on Oct.12th. That’s 2wks away! What happened to the past year? Man, I am not ready for her to be this old yet. Why must life always go so fast? She should still be an infant in my book, not walking (close to running) and talking. Her current vocabulary consists of “baby”, “hi”, “momma”, and “dadda”, followed by a whole lot of “Lily speak”. She loves babies, especially my friend Cori’s little boy Cameron. He’s 31/2 mo. old and a giant flirt! I baby-sit him 4 days a week, and Lily is always willing to help out by bouncing him in the bouncy seat or helping him suck on his pacifier i.e. sucking on it for him!! It’s great fun to watch them interact with each other.

Madie is doing well. She hates school and has asked me to homeschool her. The problem is that she’s fine once he actually gets to school, it’s just waking up in the morning that she hates. Neither Dean nor I are morning people, so it’s easy to see why she isn’t either. I think we’re going to need to get her up earlier so she has more time to make the adjustment, far easier said than done! She just recently earned her orange belt in karate and has her sights set on green next. I’m so proud of how quickly she learns the little routine that they need to know. At her last test, she performed it in front of everybody, and didn’t make a single mistake! I was shocked. She has also begun taking theatre lessons on Saturday mornings and is equally as enthusiastic about it. The teacher has to ask her to back off a little sometimes so the other kids can have a chance. She would play every role if given the chance. 

I am doing fairly OK most days. September has become a difficult month for me since Ben was diagnosed on Sept. 8th. It used to be my favorite since I love fall, but now October has taken it’s place. I’m looking forward to the holidays, but its always a bittersweet time of year (as is the rest of the year). I just know that life will never feel whole again for me and there’s nothing I, or anyone else, can do about it. Ben is dead, and he will always be dead, for the rest of this lifetime. Arrrrgh this sucks!!!

Anyway, signing up to be a Creative Memories Consultant has been a mixed blessing. I really enjoy it and believe in the mission. The problem is that I can’t seem to motivate myself into growing it as a business, and I’m not sure why. Fear of failure maybe, or the guilt I feel by being away from my family in the evenings. I also hate the thought of being a pushy salesman, which is ironic since most of this product sells itself because it’s so great. If anyone has any motivational tips, please drop me a line! I am feeling stuck.

Well I guess thats aboutall for now. I promise to try and update more since there still seem to be people who like to read it.

Take care everyone……..Melinda

*****P.S. Please say a prayer (or a lot of them) for little Alex Kasnoff. He is now on hospice for a brain tumor (different than Ben’s was) and they are doing as much as they can to live his remaining life to the fullest. They are also having to cope in the face of the most difficult time of their lives (understatement!) and need all the strength they can get. Alex’s dad Steve used to work with Dean at Requsite, and was a great friend to him throughout Ben’s illness.

Boy, it’s been a while and a ton has happened. Let’s just jump in with a smorgasbord of updates…

Update on Alex Kasnoff

I wrote about Alexander Kasnoff’s brain tumor in July of last year. It’s been a very difficult year for the Kasnoffs and Alex has not responded to the treatments for his tumor. He’s a wonderful little boy with amazing parents and it breaks my heart to think of them facing the reality of Alex’s cancer.

Gwen and Steve are working to build a play area for Alex and his little sister Zoe and they need some help - both financial and in labor. Please sign-up to lend a hand in bringing a smile to Alex’s face.

DPG Family Gathering

Melinda, Madie, Lily, Grandma Pat and I all had a wonderful time at the 2nd DPG Family Gathering. It really does help to surround yourself with people who’ve experienced the loss of a child to diffuse pontine glioma. Dr. McKnight was the highlight of this years gathering leading us in a discussion about the fine inter-workings of clinical trails. The pessimistic short version is that it takes at least 10 years to get anything done.

The optimistic version is that we’re all fired up to do something different. We’ll be focusing our efforts toward supporting families with information from another parent’s point of view. We’re not doctors and we’re not counselors - we’re just parents who have faced this challenge and are committed to sharing our knowledge to help others. The folks at JTHF.org are taking the lead on creating a new site and materials to distribute via the major pediatric brain cancer hospitals.

Conquer Childhood Cancer Act of 2007 - Again

Hearing that it’s 10 years to get anything new to patients and that there really isn’t anything hopeful out there for patients with diffuse pontine glioma has lead me back to The Conquer Childhood Cancer Act of 2007. I’m not expecting to congress to solve all of the worlds problems and I highly doubt that the NIH can move faster than 10 years. The fact is that we’re in the dark about the occurrence of childhood cancer. Hospitals and independent researchers compile all of the statistics and tracking we have and much of this data is watered-down to protect patient identity. We cannot fight a disease that we don’t understand. It’s time to begin gathering data.

Please urge your congress critter to support this bill. It’s got re-elect ability written all over (who doesn’t want to say “I voted to end pediatric cancer”). It’s the best half a billion you’ll ever spend.

Me.duim Map Widget

You might have noticed the uber cool Me.dium Map Widget in the upper left corner and wondered what the heck it is (go ahead, scroll up - I know that this is a long post). Me.dium shows you the activity of people doing similar activities online. The widget gives you a little peak into the people and websites relevant to this one by showing people moving around it. It’s free to join and is a great way to expand the visibility around a blog.

Lily is walking!

Baby Pineapple, aka Lily, started walking about three weeks ago. She’s the cutest little terror you’ve ever seen.

And Madie, is just Madie