August 28, 2006

Hi Everyone,

Just felt like posting to let everyone know how we're doing. Pineapple is doing very well and getting bigger every day. I'm approaching the 34th week mark, so it won't be too much longer now (thank goodness). The current debate on names is between Lily and Elizabeth. Madie really wants us to name her Elizabeth, but Dean and I are partial to Lily. We are also debating on whether or not to make Lily short for Lillian or Lilith, or do we just name her Lily? If we go with Elizabeth, we would probably call her Ellie for short. Than there's the middle name to decide. Do we go with the name Kay, since both Madie and I have it, so all the girls have the same? We could also combine Lily and Elizabeth into the first and last names. Feel free to share you opinion with us since we are at a stand still so far. Dean's post about the Vegas trip was accurate. It was so nice to meet everyone and be able to feel whatever emotions overcame us without judgment. It was NOT the emotional train wreck that we had anticipated it might be. Many good things are going to come from this meeting, including making this an annual event. It's unfortunate that there will be new parents to join us every year, but having such a wonderful support group will help all of us to heal. Special thanks goes to my mom for coming to our house and watching Madie while we were gone. She had a blast! September 8th (the day Ben was diagnosed) is quickly approaching, and I am dreading it more and more. It will be a year since the absolute worst day of my entire life. How do I acknowledge such a day? I would prefer to sleep through it and pretend like it doesn't exist. I know that won't work since sleep is ever elusive to me as it is right now. Should I try to turn it into a more meaningful day, or just let it be what it is and do my best to simply get through it?

Well, I guess that’s all for now. We'll let you know if the great name debate gets resolved any time soon.

Take care everyone

Melinda

Posted by Melinda at 08:49:40 | Permanent Link | Comments (6) |

August 24, 2006

Whole Lotta Catching up

Yes, I know we haven't posted in two weeks. It's been a little too busy and there's no time for excuses as we have several updates.

DGP Family Meeting in Las Vegas

Melinda and I had an amazing trip to Vegas to meet with several other families who've lost a child to diffuse pontine glioma. We were both concerned that the trip would turn into a non-stop cry fest and that we would come home feeling worse than ever. Thankfully we were wrong.

We were greeted with cries of “there's Pineapple” as we walked into the opening evening of the event. Melinda and I both felt instantly at ease and loved meeting the families that we've followed through their blog's and Caring Bridge sites. We cried, we laughed and we shared our experiences with people who are walking our same path.

Our guest speaker, Tom Zuba, pointed out how poor our society is at allowing people to mourn and that we all need to tell and retell our stories in order to process them. He's made me take another look at how I've been mourning Ben and treating my own health lately. His site is a great resource for anyone grieving and I'm curious to see what direction his book will take.

We spent a good deal of time discussing non-profit foundations and got a peek into three of the projects underway at JTHF.org:

  • The Family Link Network has just gone live and allows family's to add their website as a resource for other families.
  • Tumor Tracker is under development still and will allow parents to input their child's age, basic medical history, type of tumor, treatment plans and overall condition. The goal is to create a on-line database giving visibility to all of the treatment options for each type of tumor.
  • Their third project will allow families to connect on-line with doctors for second opinions and allow doctors to collaborate on diagnosis.

The entire event was truly amazing and we can't wait for next year.

How's that new job going?

Not too good to be honest. I've been there for three weeks without being able to tell anyone why I was hired or what my job is. Not the best way to meet people and begin earning the trust of a new team. We'll see how things shape up over the next few weeks. Or something.

Madie Started Kindergarten

And she couldn't more excited


Posted by Dean Steadman at 22:30:15 | Permanent Link | Comments (2) |

August 11, 2006

Happy Birthday to my dearest Ben

   Happy Birthday Son! You would be 7yrs old today. 7 years ago, I was blessed with the most kind and good hearted little boy I have ever met. The pain of your loss can only be compared to the joy you brought to my life. I miss you so much that I can hardly breath.

 We took Madie to Build-a-Bear Workshop today. She had the idea of making you a bear for your special day. We know it would have been one of the things you wuld have loved doing. She chose a puppy dog with Superman PJ's. You always loved being in your PJ's and would wear them all day if I let you! Madie also insisted on going out for breakfast, another of your favorite things. It just wasn't as much fun without you, then again, nothing ever will be.

   We leave for Las Vegas soon, and I know it will a time of great pain and great comfort. I look forward to meeting all of the other parents that will be there, knowing that they, more than anyone, can understand what we're going through.

Take care everyone,

Melinda

Posted by Melinda at 16:58:04 | Permanent Link | Comments (7) |

August 06, 2006

New Job - revised

Small change in the whole new job thing. I interviewed with several companies before accepting the position I was offered at Medium. GHX, the first runner-up in the 'employ Dean contest', came back to me last week and put a new spin on their job offer. So I'm starting there tomorrow instead of at Medium. It should be a much more stable company to work for and wont require the amount of dedication a start-up would have.

I'm very excited and a little apprehensive to start as I haven't put in an honest days worth of work in several months. Oh well, the vacation couldn't last forever.  
Posted by Dean Steadman at 19:01:52 | Permanent Link | Comments (8) |

August 03, 2006

Relay For Life Map

 Here's the map to the Frederick High School for those of you unfamilar with the area. 

See you there.  

 

 

Posted by Dean Steadman at 23:13:13 | Permanent Link | Comments (1) |

August 01, 2006

On The Move


Todd Morin and Dave Brown, two of my colleagues from the Requisite days, have formed a team to ride in the Livestrong Challenge this August 20th. I'm honored to have such great friends riding in Bens memory.

You can support them in reaching their goal of $2,000 and track their progress on their team site (click on one of their names to donate).

Thanks

Posted by Dean Steadman at 22:41:01 | Permanent Link | Comments (0) |

Relay For Life Update


Melinda and I are getting ready for the Carbon Valley Relay For Life this Friday. They're planning on honoring Ben during the Luminaria Ceremony and having the Sleepness Knights play Ben's Song. We've been asked to say a few words at the start of the ceremony which has me facing that old problem of describing my emotions right now. On one hand I miss my son and want to crawl into a hole. On the other I want to start fighting this cancer again. I'm sure I'll figure something out before Friday.

Here's the agenda for those wishing to attend:

Friday, August 4, 1006:
3:00 pm - Onsite Registration begins
3:00 pm - Campsite set up begins
6:00 pm - Survivor Reception
7:00 pm - Opening Ceremony and Survivor Lap
9:00 pm - Luminaria Ceremony

Melinda and I can always use your support. Thanks

Posted by Dean Steadman at 22:22:39 | Permanent Link | Comments (1) |