A Small Request From A Heavy Heart

Hi all,

So, I have to admit, I have no idea if anyone follows or reads this blog anymore.  As I'm sure most of its previous readers are aware, Bennet is currently cancer free and a healthy active almost 20 month old bouncing boy.  I write that happily.  And my heavy heart has nothing to do with Ben tonight.  Instead, it deals with two other young people fighting for their lives right now.  Two children who I believe Ben and his parents Jenny and Dave all met in during their time in Portland when Benny was being treated.

These two children--Ethan Jostad and Faith Fulmer--and their families have received devastating news in the past week.  Both children, who are fighting for their lives, have been giving just weeks to live by their respective doctors.  I don't know either of these children or their families personally.  And to me that doesn't matter.  The idea of children suffering and dying from cancer breaks my heart.  I want to help.  I want to work with organizations that help these kids.  I want to make their lives better and brighter in some way, any way, that I possibly can.  Right now all I know from down here is the power of Team Ben.  In all honesty, I have no idea if the prayers, good thoughts, and positive energy we all sent to Ben during his fight did anything good or not.  But what I do know is that it didn't hurt anything.  I'm not asking for much this time relative to what I asked for during Ben's fight.  Maybe if I had gotten involved earlier, I would have.  But at this point I'm not sure we can do much more than hope for a miracle.

So, all I'm asking for is for all of you who may still read or follow this blog is to do whatever it may be that you do, be it pray, think good thoughts, or send good energy, to do just that and direct it up to Ethan, Faith, and their families up in Portland at Doernbecher.  I don't know if it will help, but it sure as hell can't hurt.  Thanks all.

As always, F*ck Cancer!

-Jake Levi

Going Home

Well, as I'm sure most of you are aware, Baby Ben is a total rockstar.  To make this short and sweet, he gets to go home today.  He's doing great.  He's standing and is up and around.  So, our happy little trio of Ben, Jenny, and Dave along with a number of their supporters, get to go home today.  I'm pretty sure I'm not the only one excited about this.  Great job Team Ben!

F*ck cancer, I ride with Clyde!

-Jake

The Big Day

Hi everybody.

So Benny's surgery was scheduled for 1 pm today.  It got moved up to 11:30 am and then he actually went in at about 10 this morning.  The surgeon thought it would take 4-7 hours.  Jenny was actually woken up 2 1/2 hours later and told Ben was out already.  The surgery went really well.  The surgeon got 98% of the remaining 5% of the tumor.  The hope is that the small amount that they didn't get is actually dead material.  When I last talked to Beth she said they had seen Bennet, he had been in some pain, they gave him morphine, and he was sleeping.  I guess he has a pretty big incision across his belly where they opened him up.  Obviously, everyone is relieved that today went so well.  Benny has been an absolute superstar since this all started in June, as have Jenny and Dave.  I'm not sure what the next step is.  Originally Beth told me Ben would spend 5 days in recovery at Doernbecher, but I don't know if that is still the case.  I'll make sure to keep everyone up to date as to what is going on as I hear it.  Thank you to everyone who sent good thoughts and prayers to Benny, Jenny, and Dave, I know they helped.

As always, f*ck cancer, I ride with Clyde!

-Jake

Surgery

I just wanted to pass on the information that the surgery to remove what is left of Bennet's tumor is scheduled for Tuesday.  I'm not exactly sure what time its scheduled for, just Tuesday sometime.  Ben and Jenny, along with at least Beth, Collin, and their two girls headed for Portland tonight.  I don't know who else went up, but they should be there by now or pretty close.  Please send all the positive thoughts and prayers you can their way these next couple of days.

F*ck cancer, I ride with Clyde!

-Jake

More Chemo and Surgery

Hi all,

Sorry for the lack of updates lately, but there hasn't been a ton going on to post.  Benny has completed his fifth round of chemo.  It was a three day round and he got through it like a champ like always.  He, Jenny, and Connie took a trip up to Doernbecher a couple weeks later for an MRI to see how that round of chemo did.  Ben was a little sick for this trip but the oncologist didn't want to wait for him to get better to see what was going on.  Luckily, the tumor had shrunk even more.  It had shrunk enough that it was no longer encroaching on his spine or rectum if I remember what Beth told me correctly.  Because of that news, the oncologist and surgeon had to decide what the next step was.  Apparently, again from what Beth relayed, the options were to leave what was left of the tumor and just keep an eye on it or do surgery to remove what is left of the tumor.  Obviously, both of these options have pros and cons.  And either way, Ben is done with chemo for the time being.  Jenny was supposed to hear from the surgeon with a decision I believe last Monday, but it took until this afternoon for him to finally call.  The decision is to do the surgery to remove what is left of the tumor.  The surgery will be sometime next week from what Beth has told me.  Jenny is waiting for a call back from the surgeon either tonight or tomorrow morning with a plan for when the surgery will be.  It will be done at Doernbecher and apparently Benny will have a five day stay there for recovery afterward.  That is all I have at this point.  When I hear when the surgery is, I'll be sure to pass that along.  For now, please keep up the good thoughts and prayers and send them Ben, Jenny, and Dave's way.

F*ck cancer, I ride with Clyde!

-Jake

Latest News

Ok, so I'm a little behind.  For that I apologize.  I was in Medford visiting for 11 days from September 30th to October 10th.  The first weekend of my trip Benny, Jenny, and Dave were up in Portland at Doernbecher for tests to see how Ben was progressing in his fight.  He had a heart test, a hearing test, and I think maybe a visions test, and possibly one other test to see how the chemo was affecting his body.  All of the tests came back good.  The kid is strong and his body is doing fine with the chemo.  They also did another MRI to see how the tumor had reacted to the chemo.  When the MRI results came back we found out that the tumor has already shrunk by 85%!  That was great news.  The doctors told Jenny and Dave they could go home but would need to return this week (the week of the 11th) for an IMBG test.  This is a test where they inject Bennet with a dye or ink.  I believe it is radioactive though I could be wrong about that.  In any event the dye/ink is somehow able to search out any cancerous cells and light them up in another sort of scan.  So this week on Tuesday Ben was injected with this stuff and on Wednesday he had the scan.  Basically the doctors did this in order to see if the remaining 15% of the tumor was a sort of scar tissue or if it was still cancerous.  Today the results of the scan came back.  It turns out that there are still cancerous cells in the 15% that remains.  I don't know how much of it is cancerous or if all 15% is.  What I know is that Ben with have to undergo more chemo.  He will have one more round (not sure when or how many days at this point) and then in three weeks they will head to Portland again for another MRI to see what this round does to what remains of the tumor.

Obviously, this is not the news were all hoping for today.  But in my mind, its still positive.  Ben and the chemo have already taken out 85% of what seemed to me to be a huge tumor, especially in someone so little.  The kid is obviously a fighter.  And really, that 85% has been destroyed in just under four months.  We all want Benny to be healthy again and for Dave and Jenny to get back to a normal life with their little man.  But, they don't get to do that just yet.  But after 85%, we're hoping that this last 15% will be a walk in the park.  The good news is that the cancer hasn't spread and its just that 15% that remains.  My guess is that Benny will continue to fight the rest of this cancer the same way he did the first 85%.  He'll continue to be a little trooper with a smile on his face and laughing.  Luckily for him, he has two loving parents that have been very strong through all of this.  We should all be so lucky to have parents like them willing to fight for us.  Plus, well, they all have a hell of a support group behind them.  Please, when you have a minute, continue to send good thoughts and prayers to Ben, Jenny, and Dave.

I know I continue to learn life lessons from little Ben day in and day out.

F*ck cancer, I ride with Clyde!

Jake

Heading to Portland

Hey all.  I just wanted to let everybody know what's going on with Bennet this weekend.  I talked to Beth today and she said Jenny got a call from Doernbecher this morning.  They had an opening at 11:30 on Friday for Benny.  So, our little trooper and his parents will be heading up to Portland tomorrow afternoon.  I believe Ben has appointments both Friday and Monday so they will be staying the weekend in Portland.  I guess most of the results of the various tests the doctors will be doing won't be available until sometime Monday.  And for those that don't know, these two days of tests and results are to give us an idea of how the tumor/cancer has reacted to the chemo.  So we'll know where Benny is in his fight and the doctors will give Jenny and Dave an idea of what the next step(s) is(are).  So obviously, its that time again where Team Ben needs to send good thoughts and prayers north to Ben, Jenny, and Dave.  I shouldn't need to say this as you should all have still been doing this.  But just in case you forgot and needed a reminder, keep it up and spread the word.

As always, f*ck cancer, I ride with Clyde!

-Jake