Friday, July 31, 2009
Amazing Gifts . . .
Many kind people donated their time and services to give Ben an awesome birthday party. We all headed over to one of the parking lots at the hospital where the staff had put upa big awning tent and placed straw around it and brought in a couple of ponies for pony rides for Ben and his siblings.
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Very fun! We thought that was an awesome thing for them to do. We miss you guys! Ellie is SO bored!
ReplyDeleteHappy Birthday!!!!
ReplyDeleteBestest Warmest wished to you Ben. Without you, Cari and would never be the friends we are today. I love you so much little one. Is there a restriction on what kind of birthday present your Momma will let me send? I can't wait to hold and love and kiss you in 7 days! Have a blast with your sisters and Naters! See you soon.
ReplyDeleteEmily, Baby Jane, Grace, and Kevin.
Happy Birthday Benbo! We miss you terribly but you look fantastic!
ReplyDeleteHappy Birthday Ben!!!! When I held you as a newborn I had no idea what your future would hold and I never imagined that you would spend your 2nd birthday in Seattle, but I did now that you were an amazing little boy and I knew that you were born into an incredible family. I am so excited for you to have your family with you today to celebrate you and your life. You are super strong and you have proven that you are a fighter! Happy Birthday!!!!
ReplyDeleteLove,
The Parkinson Family :)
Happy Birthday little Ben! Yea for b-day #2. What a blessing to all be together on your birthday! Love you all...thinking of you often & praying for you!
ReplyDeleteLove...
The Monson's
Hello Cari - The hospital is so kind and thoughtful - what a fun thing for the kids to do!! Its just amazing how sensitive people are - heartstrings are touched and pulled & strengthened by service and caring. Ben looks wonderful - I read the other posting though with Ben's being so sick - umm all over you ! Hope you are holding up! You continue to be in everyone's thoughts & prayers. We miss you The Coxes
ReplyDeleteHi Cari,
ReplyDeleteIt was nice to meet you last week at the Hem/onc blue binder review. I was very surprised to be in the room with another Rhabdoid family. Our family entered the crazy childhood cancer world almost 4 years ago and we have never met another family whose child has a Rhabdoid cancer in person.
I just read through your blog. It sounds like Ben is handling treatment remarkably well and you have good support to help carry you and your family through this journey. I hope this trend continues through Ben’s final round of chemo.
As I mentioned at the end of the meeting, there are a couple of Rhabdoid specific websites out there. Rhabdoid Kids (www.rhabdoidkids.com) is the one I mentioned last week. A couple of years ago a parent redid/changed the format of the website. It hasn’t been the same since. (The old website had a lot of discussion on it). However there are some great sources of inspiration. If you click on the “Rhabdoid Kids” tab at the top of the page you will find links to websites of children who have successfully fought (or are currently fighting) AT/RT and other Rhabdoid cancers. There are 2 long term AT/RT survivors (Xander and Justin) that were treated at Seattle Children’s. When Jackson was on treatment I found that these stories provided a lot of inspiration and gave us that glimmer of hope we needed.
Another site you might want to visit is: http://www.cancerfamily.org/forum/index.php This site was created last year and appears to have picked up some of the momentum that the RhabodidKids.com used to have. Jeff Shaddix, the site founder, is working hard to create a registry of all of the children who have battled a rhabdoid tumor. (Here is a link if you are interested in sharing Ben’s treatment information with him: http://www.cancerfamily.org/forum/misc.php?do=form&fid=2)
And finally, last year Jeff set up a phone interview with Dr. Jaclyn Beigel from Children’s Hospital of Philadelphia to discuss her research into the genetic aspect of Rhabdoid Tumors. Jeff recorded the interview and put it on the website. I found it to be very informative. If you are interested in listening to it, here is the link: http://www.cancerfamily.org/forum/showthread.php?t=40 (Scroll down to the last entry on that page).
I hope all continues to go well with Ben’s treatment. We will be cheering you all on as he completes his final round.
Take care,
Kelly Forebaugh
Jackson’s website: www.caringbridge.org/visit/actionjacksonforebaugh
P.S. Happy belated birthday to Ben!