Twin Cities CureSearch Walk

The Gegens are participating in the Twin Cities CureSearch Walk on Saturday, September 7th! They know first hand how important it is to raise research dollars to get rid of this awful disease once and for all. You can help! Sponsor The Gegen Five in the walk! Click here for a link to their donation page!

Dangle. Snipe. Celly.

The Gegen Five

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http://rpx.me/1/-B9o  (Click to go to my donation page for the CureSearch Walk for Childhood Cancer to see more information.The CureSearch Walk celebrates and honors children whose lives have been effected by childhood cancer, while raising funds for lifesaving research. You can help us by encouraging your friends, family, co-workers and community to champion our cause.

I stumbled upon the above saying(in orange and yellow) a few months ago and I thought, ” How true this was for me.” Before John’s diagnosis of Stage IV High risk neuroblastoma and the fight for his life, I hadn’t put much thought into childhood cancer. In fact I avoided it…It made me “uncomfortable”. I can’t even believe that I am going to confess to this…but when those terribly depressing St. Jude commercials -with the sad music and those so very sick bald kids came on the TV, I couldn’t turn the channel fast enough. It…

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A Note from The Gegens

John "Mikko" Gegen | Summer 2013 | What a difference a year makes!

John “Mikko” Gegen | Summer 2013 | What a difference a year makes!

If you read our last post, you’ll know that the summer of 2013 couldn’t be more different for the Gegens than the summer of 2012. And that is a good thing.  Scratch that.  That is a GREAT thing! Mikko and his family are making the most of these days of good health!  And in doing so, they’ve also spent time reflecting on how far they’ve come, and they would like to share this message with all of you.

Dear Mini Sticks for Mikko & all the Magnificent Mikko Supporters,

What a difficult year it has been for Mikko and our family. Our little boy has battled what no person should ever have to face, but he’s made it…we’ve made it. I was reminded again tonight as I stumbled upon your cards, letters, and well-wishes from all over the United States and Canada, cheering Mikko on, lifting our family up in our darkest days…how truly blessed we are. Mini Sticks for Mikko and all of you have proven to us how truly kind and caring people are. People that don’t even know our little hockey fan, but are rooting him on anyways.

We can’t thank you enough for your support, letters, and the bunches and bunches of mini sticks you have sent Mikko’s way! Our entire hockey loving family has found joy in these mini sticks and they have put lots of smiles on our faces, along with a few chips in our coffee table. 🙂

We are ecstatic to report that Mikko’s scans at the end of May came back clear once again and he remains NED (No Evidence of Disease)! Early in June he had his hickman catheter removed from his chest as well as the feeding tube from his tummy. Mikko is officially footloose and fancy free! He has been swimming like crazy, tubing at the cabin; a ring bearer in a wedding and his Make A Wish trip to Hawaii is just a few weeks away. We are all loving this wonderful summer and making up for lost time.

Mikko will continue to have scans and bone marrow biopsies ever three months with his next one will be at the end of August. We don’t know what our future holds, but we do know that today is a gift….the answers to all of our prayers. We continue to take life one day at a time.

From the bottom of all of our hearts we thank you, thank you, thank you!

Jon, Shelly, Mikko, Michael & Jeffrey Gegen

So… in case you were wondering just how awesome YOU all are…. there you have it!  Thank you so much for all you have done for this very special hockey family!  You rock!

{ Note… if you want to keep up with The Gegens, you can follow them here: The Gegen Five  The Caring Bridge site will only be updated when there are medical issues to report.  Which, thankfully, is not very often these days!}

Dangle. Snipe. Celly.

Great, Fantastic, Super, Amazing News!

Kick Cancers ButtHello Team John!  So much has happened since we’ve last checked in.  First of all, the Light the Lamp for Mikko benefit was a huge, huge success!  We had beautiful weather, a fantastic turnout, and lots of fun!  It was such a wonderful way to celebrate all of the hard work that Mikko has put in to kick cancer’s butt!  Thanks to all of you for your contributions and support, we couldn’t have done it without you! (Check some photos here!)

But… the good news about the benefit is nothing compared to the most recent news regarding Mikko’s health.  For those of you not following his Caring Bridge page, you’ll be happy to know that Mikko’s most recent bone scans and urine test have come back as “No Evidence of Disease”!  It’s the best of the best news!  Mikko has been feeling well, he’s been attending school, and is even a “Little Scooper” in Lacrosse!  He will be getting his hickman line out soon, and is looking forward to doing some swimming this summer!

The Gegens are still investigating another treatment option in Michigan that they might participate in August, and Mikko will have regularly scheduled scans in his future and some possible physical therapy, but they have lots of fun things planned for this summer.  A certain, soon to be 7 year old, deserves it!

Mikko at his school carnival! Fun stuff!

Mikko at his school carnival! Fun stuff!

Thank you so much for your help in lifting the Gegens spirits on some of their darkest days, you rock! The mini-sticks serve as a constant reminder that they have never been in this intolerably cruel fight alone.  Neuroblastoma is a beast, but today, John “Mikko” Gegen will attend his last day of Kindergarten with his class, and this brave little boy can look forward to a fun filled summer with hope for a healthy future.  High fives all around!

Dangle. Snipe. Celly.

Fox9 News story on the Gegens!

Fox 9 Screen ShotYou may have heard that Mikko and his family have been selected by the Minnesota Wild to help raise money for Children’s Hospitals and Clinics of Minnesota at their “Wild About Children” benefit! They couldn’t be more excited! This event has raised over $800,000 over the years for Children’s. So awesome! In advance of the benefit Fox 9 News sent a crew down to get to know them a little bit better! Click here to watch the clip!

A great piece highlighting an amazing family in this battle of a lifetime!  After it aired, Shelly did want people to know that John continues his battle with cancer… there is still work to be done!  Here is her Caring Bridge entry explaining where they are in the process.

FOX 9 News spent a good deal of time with our family this morning. Scott Wasserman and the cameraman (Nice guy…can’t remember his name) along with Erin, the representative from Children’s, were all wonderful. Scott did everything but stand on his head to try and get Mikko to talk. Jon and I thought the story turned out well, but there are a few things that I would like to clarify. Is it important….to me it is so here it is:

1. Mikko has not beat cancer….yet! He continues the fight and that is why he is returning to Children’s tomorrow to begin the next antibody treatment. He still has work to do. I did say that the doctors don’t see any cancer in Mikko right now, but I also said that he continues treatment because there could be cancer there that all the tests and scans can not detect. I also said I don’t think that with Neuroblastoma you are considered cancer free…Mikko is NED right now..No Evidence of Disease..and I think that’s the best you can be in the world of Stage IV Neuroblastoma
When I brought up the fact that it was mentioned several times that Mikko beat cancer, what did Jon say, “That’s ok”. He hasn’t figured out after all these years that response doesn’t settle my nerves…It just revs me up (“What? It is not ok! BLah, blah, blah!!)  He even said it himself at the end, “Hope…that it can be beat)…because that is so much what we want! We have to believe it can be beat, we have to hope…so we can fight on, but Mikko’s not done yet. He still has work to do with 2 more antibody treatments and accutane. Then there is the whole “Do we go for another clinical trial to keep the crap away”…
2. Prognosis? When I was asked what Mikko’s prognosis was part of my response was included “He’s thriving, energetic.” all that good stuff, but I also added that we have learned to live one day at a time, that in life, all life but especially one with neuroblastoma…you never know what tomorrow may bring.
The story was great! Mikko sat quietly on my lap and watched it and watched and watched it(DVR). The boys made fun of their dad..It was a very positive piece. So why do I feel the need to clarify on those few topics? Because…I know we still have a good deal of work to do, I don’t want to jinx how well everything is going with being prematurely optimistic and most of all I don’t want to offend the other parents and children in the middle of their own neuroblastoma battles! I would never say he beat it when he wasn’t even done with his treatment yet.
Whatever right?! I do not mean any disrespect to FOX 9 because they were kind and did a super job of getting Mikko’s story out there and promoting the Wild About Children event. I know the Gegens are Wild about the MN Wild and especially wild about Children’s Hospital and Clinics. They have brought our little boy so far in the past 10 months! When I look back and think of all he has endured or battled through, it doesn’t even seem possible. They gave Mikko the best of the best in doctors, nurses,  medicine. Children’s has given our family hope that one day Mikko will beat this, or whatever they call “beating it” in the crazy world of neuroblastoma.
Love, Hope & Blessings,
Shelly

Keep little Mikko in your thoughts this week!  Also… just a reminder that TICKETS for Light the Lamp for Mikko are on sale NOW!  Get yours today!

Dangle. Snipe. Celly.

Benefit for the Gegens!

Light the Lamp Color Logo

John “Mikko” Gegen Benefit | April 27, 2013 | Hastings, MN

Things may appear to have been a little slow here lately, but the truth is, we’ve been putting our efforts into planning a benefit for the Gegen family, which will be held on Saturday, April 27, in Hastings.  As you can probably imagine, the unpaid time off work for little Mikko’s hospital stays are starting to take a toll, and we want to help ease the financial burden!  Of course we are still accepting Mini-Sticks, and will go back to promoting this more after the benefit, but you’ll find more activity and ways to help by following the Light the Lamp for Mikko benefit page!

The Gegen Brothers at the Minnesota Wild Game

The Gegen Brothers at the Minnesota Wild Game

Another piece of exciting news, If you’ve been following the Mini-Sticks for Mikko project, you know that the Minnesota Wild have been extremely generous and supportive of the Gegens.  Recently the Wild invited the Gegens to watch a game in a suite sponsored by Pierre Marc Brouchard, and they got to meet the team afterwards.  What a thrill for the whole family!

But here is the best news…. each year there is an event titled Wild About Children, hosted, of course by the Wild, in an effort to raise money for Children’s Hospitals and Clinics of Minnesota.  The event highlights the amazing and important services provided by Children’s MN by featuring a patient and his or her family.  This year’s patient?!  John “Mikko” Gegen!  How awesome is that!  All of the Wild players will be there and working the event!  We can’t think of a better group of ambassadors than the Gegens!

Go #7!

Go #7!

Another quick piece of fun news, despite the painful antibody therapy treatments Mikko is getting, he was well enough to be on the ice himself last week. What a champ.  Please pray for many, many, many more hours of ice time for him to enjoy!

We’re so grateful for your continued support. Hooray for Hockey!  Hooray for the Minnesota Wild (amazing, amazing people!!)! Hooray for Minnesota Children’s Hospitals and Clinics! Hooray for you!  Please reach out if you can contribute anything to Light the Lamp for Mikko!

Dangle. Snipe. Celly.

 

Defending the Blue Line Charity Game

Get your tickets today! Defending the Blue Line is a fantastic organization!  Show them some love!

Heads up folks!  Our friends at Defending the Blue Line are hosting an NHL Players Charity Game on Sunday, October 28 at Mariucci Arena and there is still time to get tickets!  They have lined up a list of players that will (for one night at least) help you forget about the NHL lockout! They have generously agreed to accept sticks for Mikko the night of the charity game at the Defending the Blue Line booth, so if you are going to the game and have a stick or two lying around that you would like to donate, feel free to bring it with you!

This game is incredibly important to DTBL, as the lockout could have lasting effects on their fundraising efforts.  Their mission at DTBL is to ensure that children of military members are afforded every opportunity to participate in the game of hockey, by providing free equipment for military kids, hockey camps, special events and financial assistance for registration fees an other costs associated with hockey.  Wow! How awesome is that?!

In addition to collecting the sticks at the charity game, DTBL has been instrumental in the Mini-Sticks for Mikko program.  They serve as a collection/delivery point, have helped us spread the word about the project, they’ve assisted us in  securing some really cool sticks and even hosted Mikko’s family to last summer’s NHL Charity Game.  We couldn’t do it without their help!  Please join us in supporting this amazing organization!

Details:

  • 6:00 pm Doors Open
  • 6:45 Pre-Game Ceremony
  • 7:00 Game Starts
  • Tickets for all of this hockey awesomeness are only $20, all money going to a great cause!

Players scheduled to attend:

  • Keith Ballard
  • Stu Bickel
  • Justin Braun
  • Kyle Brodziak
  • Dustin Byfuglien
  • Ryan Carter
  • Cal Clutterbuck
  • Matt Cullen
  • Troy Davenport
  • Davis Drewiske
  • Matt Hndricks
  • Jack Hillen
  • Tim Jackman
  • Erik Johnson
  • Matt Kassian
  • Mikko Koivu
  • Mike Lundin
  • Ryan Malone
  • Paul Martin
  • Jimmy O’Brien
  • Kyle Okposo
  • Zach Parise
  • George Parros
  • Chris Porter
  • Darroll Powe
  • Dan Sexton
  • Clayton Stoner
  • Ryan Suter
  • James Van Reimsdyk
  • Stephane Veilleux
  • Blake Wheeler

Pretty cool huh?

Dangle. Snipe. Celly.