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BEN'S PAGE .jpg)
Welcome to Ben's Web Page. It's been provided to keep our family and friends updated on Ben's progress. Ben was diagnosed with bi-lateral Wilm's Tumor (cancer of the kidneys) when he was 16 months old. He's been through lots of chemotherapy treatments, radiation treatments, and surgeries over the course of his thirteen year old life, and has been able to fight it off five times over. Much to our dismay, he had to fight it off for a sixth time, in March 2009, causing acute renal failure, and spreading to the lungs and liver. He underwent radiation treatments and has completed more chemotherapy. He was on twice daily perionteal dialysis at home for two years following renal failure, but had to switch to hemodialysis in May 2010 due to an infection. We were able to utilize a home hemodialysis program that allowed us to administer his treatments six days a week at home. He continued to do this until he received a successful kidney transplant on June 15, 2011!!!! Our seventh grader continues to amaze us with his endurance, tolerance, strength and a wry sense of humor. Some of his favorite things are playing video games, Taekwondo, listening to music, playing electric guitar, riding his bike, and making movies with his friends. He has a beautiful big sister named Hannah, and although it can be hard to tell sometimes, he loves her dearly. :) He also has a twin sister and brother, named Ava and Max, who make him laugh with the funny things they say and do, and frustrated with everything else they do. We are all blessed with a large and loving support system consisting of family, friends and lots of people we've never even met. Please feel free to leave Ben a message in the guestbook, and as always, thanks for checking in on him!
HOPE
What is hope?
Hope is the rainbow
after the storm
bringing promises of laughter and sunshine
and better days to come
Hope is knowing that a bad day is just that,
one bad day
And that, no matter how bad a day it is,
everything will be better tomorrow
or the next day
Someday
What is hope?
Hope is a child's laughter
or a bird's song
in a place where sadness intrudes
Hope is the knowledge that
every little thing is gonna be alright
and that, somewhere,
there are flowers
and music
and joy
What is hope?
Hope is what is left
when everything else is gone
Written by:
Hannah Marie Lansing
July, 2010
Age 14
Until there is a cure...Peace~Love~Hope~ ~ Angel Chris Schauf
Journal
Wednesday, April 25, 2012 8:37 PM CDT First of all, I apologize for not keeping this site updated on a regular basis. Our visits have become much less frequent, and thankfully, uneventful. Leaving me with very little to write about...at least in the medical world.
To bring you up to date, Ben was recently seen by his Oncologist to confirm that he is still free of cancer. And he IS! :) He has now graduated to a four month gap from now until his next oncology appointment. He's never had the privilege of going longer than three months because he would relapse before getting there. So this is a big step for him! On the nephrology side of things, he continues to have lab draws every three weeks to monitor his kidney function and determine if any medication adjustments are needed. He also sees his Nephrologist every month for an exam. These visits will also begin to decline as the years pass by.
His one year anniversary post-transplant is June 15th!! It's hard to believe that it's almost been an entire year since that day. I remember it like it was last week. It was such a scary, exciting, and PAINFUL day. So, so glad to be on this side of the process!
Ben has begun taking a Taekwondo class twice a week and is thoroughly enjoying it. It's great to see him loving something, and being physically active again. He's also continuing to play guitar and can be found at most given moments walking around the house with it strapped to him, plucking away at it.
The rest of the family is doing well. Hannah is very busy with school, piano lessons, solo and ensemble (trumpet, piano and voice), clubs, Forensics (she took 3rd at State competition), track & field, prom, and is now in search of a job. She got her driver's license in March and took her ACT's this month. It's been a busy year of milestones for that girl!
The twins are very fun, very busy and growing like weeds. They are now four years old! They are great little companions for me while Dave, Hannah and Ben are gone during the weekdays. Ava is a happy little ray of sunshine and adores conversation and helping in any way she can. She's very nurturing. Max is a sweet little man who keeps to himself often, really adores his sidekick, and leans on her to bring him out of his shell in social situations. Both of them have loving qualities (and not so loving ones too!) and provide us with many opportunities to smile and laugh. They are gentle reminders of the simple things that can provide genuine pleasure if we would just take a moment - like blowing and chasing bubbles, or watching ants running in and out of their hills. This fall will bring 4K two days a week. They are both excited to start school.
Dave is extremely busy at work - very glad for that. He's also been working hard on projects in and out of the house that have long been neglected due to the crazy medical schedule we had to juggle for so many years. He's doing a great job and I think we both have to pinch ourselves sometimes when we realize that the time we've been longing for, is actually here.
I've been keeping busy with all of the kids and their activities, fitting in some time to take care of myself as well. I've pretty much put myself on the back burner for more years than a body is meant to be put there, so I'm trying to reverse as much "damage" as possible. :) There are still medical issues concerning Ben to manage, but these don't fill up my days anymore and are doable. I will embrace them! We were also lucky enough to be involved in another St. Baldrick's event that some wonderful folks put together in March at UWSP.
I suppose that about sums up the last few months. Life is simpler. Life is good. And we are grateful for that.
Lots of love from the Lansings...
Michelle
Read Journal History
Links: http://www.uofmchildrenshospital.org Amplatz Children's Hospital
http://www.amyfrankmusic.com/ A beautiful cd in honor and support of the many Caringbridge families with all profits being donated to Caringbridge. Check it out and buy for yourself, family and friends. We love ours and love knowing that it's also going to benefit a great cause - Caringbridge!!
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