Bennet Update Containing GREAT News!

First what I'm sure everyone is looking for.  We still don't know what stage Ben's neuroblastoma is.  We're still waiting for the lab results from the bone marrow scan and it looks like they aren't going to be back until tomorrow.  From what Beth told me they also did another MRI and a bone scan today.  The bone scan is different than the bone marrow scan as the cancer could be in the bones but not the bone marrow and vice versa.  We aren't sure what the reasoning was behind the MRI today other than the doctors were trying to get a better angle of the tumor and Benny's spine.

Obviously, we all want to know what exactly we are fighting here, which the above didn't give us, but I do have some good news.  I just talked to Beth's husband Collin.  He said that whether or not we get the lab results back tomorrow, Bennet will be starting chemo.  It looks like at this point they're going to do 4 or 5 days on and then 3 weeks off and then 4 or 5 days one and another 3 weeks off.  At that point they do more test to see how the tumor is responding.  There is a possibility at that point that if the tumor has shrunk enough and is no longer encroaching on certain nerves that they could perform surgery to remove it.  Right now that isn't an option because of the nerves the tumor is encroaching on.  The really good news that Collin shared is that from what the doctors are seeing right now, Bennet has a 90% survival rate.  Even if the lab results show this to be stage 4 and the cancer is in the bone marrow or the bones, the survival rate remains at 90%.  Those things would just mean additional cycles of chemo beyond the two cycles that I described above.

Like I said great news!  That's it for news at this point.  If I hear anything else tonight I will pass it on.  Now, I just want to share with you the first picture I've received of someone rockin' one of the shirts they ordered.  This is Angie Dieringer's 10 month old Chase rockin' his "Hey cancer, F*CK YOU!" onesie!  Thanks for sending this along Angie!

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

-Jake

Thoughts of the Number 3

Hi everyone,

So today is the day that the bone marrow scan comes back and we should know what stage neuroblastoma Benny is dealing with.  From what the doctors have said to this point it looks like its a stage 3, but I guess there is still a possibility of a stage 4.  As such, I, and I hope all of you out there following along, will be thinking of the number 3 until we hear one way or the other.  I have to head to work, but as soon as I get home this afternoon I will post what I hear about the results/stage.

Keep spreading the word about Benny's fight, the blog, the shirts, and donations.  Keep the good thoughts and prayers coming.

F*ck cancer, I ride with Clyde!

-Jake

In Case You Missed It Try #2

So I realize that the first post I did with the link to the downloadable mp3 was kind of a pain.  I am going to leave it up, just in case people want to download the mp3.  Between work, looking for a new job, and trying to keep all these things up to date and come up with ideas, my brain is a wee bit tired.  Luckily, someone else out there is thinking.  Erin Lewallen, a cousin of Ben's uncle Collin, suggested I put the audio clip on Youtube.  She also suggested I could add pictures and whatnot using Windows Movie maker so that's what I did.  And here, thanks to Erin's great idea, is a much easier way to listen to Delilah's Shout Out to Baby Bennet, Jenny, and Dave.  All of this was really made possible by our friend Matt Eriksen as he is the one who wrote the shout out and got it on the air in the first place.  Thanks Matty!



F*ck cancer, I ride with Clyde!

-Jake

In Case You Missed It

Blogspot is making this a little harder on me than it should be.  For some reason they won't let you post an actual audio file on your blog.  This basically means that I had to put the mp3 that our friend Matt Eriksen was kind to send me on a file hosting site and then give all of you out there the link to the site.  Its kind of a pain as you have to scroll down and then click on the link then wait for like 25 second and then click again to download the mp3, but its worth it.


I'd like to take the time out here just to thank Matt for putting this together not only for Baby Bennet, Jenny, and Dave, but for the rest of us as well.  When I heard it last night it brought tears to my eyes, and I'm sure I'm not the only one.  So Matty, thanks for finally giving a sh*t about your job as you so eloquently put it.

Here's the link to Delilah's shout out to Baby Ben on the Delilah show on June 28, 2010:

http://www.filefactory.com/file/b252bb0/n/Ben_on_the_Delilah_Show.mp3

I just realized that if its easier for people, I'm happy to just email the mp3 to you, just send me an email at ridewithclyde2010@hotmail.com and let me know.  And if that's what you want me to do, please be patient, you may not be the only one.

Oh, as far as I know nothing major happened today with Ben and his condition and treatment.  It was most likely a lot of sitting and waiting around for the bone marrow scan results, which are due back tomorrow sometime.  Remember to keep good thoughts for Benny in your head.

Until tomorrow, f*ck cancer, I ride with Clyde!

-Jake

Tomorrow and an idea I forgot

I wanted to let everyone know that tomorrow is kind of a down day. I don't mean down in the emotional sense. What I mean is that there is nothing major planned as far as Ben and his treatment are concerned. Obviously, this could change. But for the most part tomorrow will be a hang out and wait kind of a day as we wait for the results of the bone marrow scan, which aren't due until Wednesday I believe. If I hear of something during the day, I'll let you all know when I get home from work, but as of right now, don't expect anything major.

Now my idea. This is for those of you that have ordered shirts to show your support for Baby Ben, Jenny, and Dave. I think it would be fun if they could actually see that support. What does that mean, right? Well, I think it would be cool if when you all get the shirts you ordered, wear them. But when you do, have someone take a picture of you and send it to me at ridewithclyde2010@hotmail.com. I will then post the pictures here on the blog and somewhere on facebook where people can see them. Not only is it a fun way for Jenny, Dave, and the family to see your support while they're up at Doernbecher's, but seeing you wearing your shirts may also inspire someone else to buy one.

If you missed Delilah's shout out to Bennet, Jenny, and Dave tonight on the Delilah Show, our awesome friend Matt Eriksen should be sending me an mp3 of it at some point tomorrow and I will make sure to post it here.

Until tomorrow, f*ck cancer, I ride with Clyde!

-Uncle Jake

Quick Shout Out Update

So Big Matt just posted an update. If you want to make sure you hear the shout out, tune in to your chosen station around 10:35. The shout out should be aired around 10:43. Apparently Matty tried to get a f*ck cancer out of Delilah, but the FCC frowns on that sort of thing.

So I'll leave you with our version of it.

F*ck cancer, I ride with Clyde!

-Uncle Jake

The Day's Events, a Special Shout Out, and One More Shirt

So first off, I need to apologize to those of you follow the events of Ben's treatment here on the block. I meant to tell all of you that during the week, I work and don't have access to a computer. As such, I will try to update twice daily once either late a night or early in the morning to let people know what's scheduled for the day and then in the evening to let everyone know how the day's events went.

As I posted this morning Benny had a busy day today with both his chemo port surgery and the bone marrow scan. I wanted to explain real quick what a chemo port is for those of you who may not know. Basically, Ben had a tube surgically implanted into the left side of his chest below his collar bone. This tube has a cap on it and goes directly to a vein. Its kind of like an iv and the chemo is in a drip bag that hooks up to the port. They do it this way because the port can stay in for months at a time where the iv has to be changed every few days. From what Beth said the surgery went well. The bone marrow scan also went well and was done at the same time. They put Ben out, or under, or whatever term you want to do. We won't have the results of the scan for 48 hours (more like 42 at this point I think). When I talked to Collin he mentioned something about them drawing extra blood and marrow samples. No one confirmed this for me. Collin did say they were sending these to a national registry or lab. Again he didn't say why, but I can guess. I would assume this is a precautionary measure taken in case the cancer is found in the bone marrow. In that case, in sending the samples out now, finding a donor that is a match to our little man will be a quicker process. Like I said, this is just a guess on my part as I haven't heard for sure that they even did this. They are currently holding off on starting chemo until we get the results of the bone marrow scan. Other than that, everyone seems to be doing ok. Beth said today was king of a hard day for Jenny, so if you get a minute just send her a little extra love.

Now the special shout out part of this. We have a friend that lives in Seattle that goes by Big Matt. Big Matt is a writer for a radio show that is broadcast nation wide and on any given night has a following of about 8 million listeners. This is the Delilah Show. Today, Big Matt had Delilah record a special shout out to Ben basically just asking her listeners to say a quick prayer for our little man. The show is carried in Medford on KCMX 101.9 FM. Matt said that the shout out will be aired tonight between 10:40 and 10:50. For those of you not in the Medford area head to this address to see if there is a station in your area that carries the show: http://www.delilah.com/pages/stations.html. If you are following in the Chicago or Houston areas, your times are going to be different. Sorry. You can also finds stations that play audio online during the show if you are in an area that doesn't have a station that carries the show. Matt also mentioned that he would send me a link tomorrow that I can post here on the blog for those of you that aren't able to hear the show tonight.

Just in case there are more California Golden Bears out there that would like to be a part of Team Ben, I made a Team Ben shirt using the Bears colors. You can find it here: http://www.cafepress.com/TEAMBENCGB

I think that's it from me for the moment. If I hear anything else tonight I'll let you know. I think we're kind of in a holding pattern again until we get the results of the bone marrow scan. Thanks again to those of you who have made donations or bought t-shirts!

F*ck cancer, I ride with Clyde!

-Uncle Jake

Quick Benny Update

I just wanted to give everyone a little heads up on what's happening with Benny today. From what I understand he's having a couple of things done and I think they're doing them at the same time. I believe he's having his port put in for the chemo and they are also doing the bone marrow scan. I know the bone marrow scan is pretty painful and I'm guessing the port might be too. As such, they'll be putting Ben under for the procedures. Keep good thoughts and prayers in you head for Ben, Jenny, and Dave. I don't think we know yet what stage the cancer is, but we should know in the next couple of days.

F*ck cancer, I ride with Clyde!

-Uncle Jake

2 More Shirt Designs

So I've actually gotten a couple shirt requests and I wanted to post the link to the result of one of those requests. I'm just gonna throw the links up and a quick description and you can all check them out.

Links:

http://www.cafepress.com/WrongBaby - This shirt reads "Cancer messed with the wrong Baby" and has three sets of hearts on the front, with I Ride With Clyde and a picture of Baby Ben on the back
http://www.cafepress.com/TEAMBEN3 - Another variation of the TEAM BEN shirt with a single childhood cancer awareness ribbon behind the TEAM BEN on the front of the shirt

Just as an update, we've sold 13 shirts this far, which means the shirts have raised $65 for Ben, Jenny, and Dave. We've also had donations totaling $270 so far, which is awesome. Keep the orders, donations, good thoughts and prayers coming. Every little bit helps and is appreciated.

F*ck Cancer, I Ride With Clyde!

-Uncle Jake

More Shirts

I've got a couple more shirt designs. These two are just simple "Team Ben" shirts. The TEAMBEN shop has We ride with Clyde on the back of the shirt while the TEAMBEN2 shop has a blank back. I'm working on a couple other designs that were requested and I'm hoping they be up by the end of the day. Oh, with these shirts, the ribbons have a white background, so if you get a shirt that isn't white you will see a white rectangular background around the childhood cancer ribbons. As always, $5 of every shirt purchase goes to Ride With Clyde to help Ben, Jenny, and Dave with any expenses related to Ben's treatment that may not be covered by insurance. Here are the links for the new shirts:

http://www.cafepress.com/TEAMBEN
http://www.cafepress.com/TEAMBEN2

And here are the links for all the other designs so far:
http://www.cafepress.com/LUYD - Lock Up Your Daughters with Jenny's current profile pic of Benny
http://www.cafepress.com/IKOBD - I'm Kind of a Big Deal with same pic
http://www.cafepress.com/BennyLK - Ladykiller with same pic
http://www.cafepress.com/CNMH - Cancer Is Not My Homeboy (on front) I Ride With Clyde! (on back)
http://www.cafepress.com/EffCancerWC - Original F*CK Cancer! with I Ride With Clyde! (on back)
http://www.cafepress.com/IRWCDeluxe - I Ride With Clyde Deluxe
http://www.cafepress.com/IRWCH - I Ride With Clyde Hearts
http://www.cafepress.com/IRWC - I Ride With Clyde Basic
http://www.cafepress.com/BBGD - Benny's Buddies Go Ducks!
http://www.cafepress.com/BennysBuddies - Benny's Buddies Basic
http://www.cafepress.com/BSFightsCancer - Blue Steel Fights Cancer
http://www.cafepress.com/BEBS - Baby Epps Blue Steel
http://www.cafepress.com/EffCancer1 - F*CK Cancer!
http://www.cafepress.com/FECKCancer - FECK Cancer!
http://www.cafepress.com/HCEffU - Hey Cancer, F*CK You!

As always, let me know if you have an idea for other designs let me know either in a comment here on the blog, via email at ridewithclyde2010@hotmail.com, or find me (Jake Levi) on facebook. Thanks in advance for your purchases.

F*ck Cancer, I Ride With Clyde!

-Uncle Jake

More News

I just got a text from Beth and wanted to pass on what she told me to everyone. Like I said before the cancer is a neuroblastoma. We won't know what stage it is until Monday or Tuesday. It looks like a stage 2 or stage 3. Obviously, we're all hoping for a stage 2. The doctor is very hopeful and says Ben has a great chance of survival. Because he is so young and under 18 months, his cells regenerate really quickly which will help him in fighting this. The doctor doesn't think any permanent nerve damage has been done yet so that's a good thing. They most likely are going to start chemo on Monday. This first round of chemo is apparently the most important because it gives us an idea of what the course of this cancer will be.

Now with all of that being said, the doctor also said that it will be a long hard fight. The doc also said not to kid ourselves that Benny won't be one sick little baby, but there is hope.

Beth also said Ben, Jenny, and Dave should be up in Portland for about 2 months for treatment.

That's what I've got for now. Please keep Ben, Jenny, and Dave in your thoughts and prayers.

F*ck Cancer! I Ride With Clyde!

-Uncle Jake

Nailing Down the Cancer

Jenny and Dave talked to the doctors again yesterday and they've nailed down the diagnosis. Ben has neuroblastoma. It is a cancer common in children under the age of 2. They are waiting to hear still what stage of the cancer he has and may find that out today. Either way, the treatment of Ben's cancer will start either Monday or Tuesday.

That's it for now. Keep those t-shirt orders and donations coming! For those of you who have already sent requests for other shirts, I will get to them. I'm moving a little slow today after attending a graduation party yesterday, so it may take me a little while. =)

F*ck Cancer! I Ride With Clyde!

-Uncle Jake

New Shirts (and the Old Ones Too)

So, we've had some requests for some new t-shirt designs and I added a few of my own. I just wanted to let everybody know the new links and give you a quick description of the new shirts. Here are the new links:

http://www.cafepress.com/LUYD - Lock Up Your Daughters with Jenny's current profile pic of Benny
http://www.cafepress.com/IKOBD - I'm Kind of a Big Deal with same pic
http://www.cafepress.com/BennyLK - Ladykiller with same pic
http://www.cafepress.com/CNMH - Cancer Is Not My Homeboy (on front) I Ride With Clyde! (on back)
http://www.cafepress.com/EffCancerWC - Original F*CK Cancer! with I Ride With Clyde! (on back)

and the links to the original shirts:
http://www.cafepress.com/IRWCDeluxe - I Ride With Clyde Deluxe
http://www.cafepress.com/IRWCH - I Ride With Clyde Hearts
http://www.cafepress.com/IRWC - I Ride With Clyde Basic
http://www.cafepress.com/BBGD - Benny's Buddies Go Ducks!
http://www.cafepress.com/BennysBuddies - Benny's Buddies Basic
http://www.cafepress.com/BSFightsCancer - Blue Steel Fights Cancer
http://www.cafepress.com/BEBS - Baby Epps Blue Steel
http://www.cafepress.com/EffCancer1 - F*CK Cancer!
http://www.cafepress.com/FECKCancer - FECK Cancer!
http://www.cafepress.com/HCEffU - Hey Cancer, F*CK You!

Remember, you pay a base price that goes to cafepress.com and then the other $5.00 of each order goes to Ride With Clyde, a fund to help Ben, Jenny, and Dave with cost incurred during Benny's fight that may not be covered by insurance. I make no profit on these shirts. Also, please send any requests or suggestions to me (Jake Levi) on facebook, by commenting here on the blog, or to ridewithclyde2010@hotmail.com.

Shirt Requests

Beth just asked me if I can make other shirts as people having been asking and requesting other shirt designs. I can make other shirts either with new designs or with different colors of the current designs (meaning font colors). All I need from you guys is what you actually want on the shirt. You can post requests or suggestions here on the blog in the comments, email them to me at ridewithclyde2010@hotmail.com, or find me, Jake Levi on facebook and ask there.

I wanted to say one other thing. If you want to make a donation but have limits funds, you should not feel obligated to donate money. If you have something else you think can help Baby Ben, Jenny, or Dave right now, by all means send it along. If they can't use it, I will make sure it gets to another cancer patient and their family that can use it.

As always you can send donations to:
Ride With Clyde
1116 Hamilton Lane
Burlingame, CA 94010

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

-Uncle Jake

Duh

I also forgot, if you are unable to help out in the fundraising realm don't worry. Keeping good thoughts in your head for Ben and the Family, or saying little prayers here and there the brave little guy, if that's more your thing, are more than enough. We appreciate every gesture no matter how big or small it is. The love and support being shown for Ben, Jenny, and Dave is truly awesome.

F*ck cancer! I ride with Clyde!

-Uncle Jake

Heading Into the Weekend

From what Collin has told me via Beth, who I could hear in the background, we may have gotten a bit of a reprieve for the weekend. They met with an oncologist who from Collin's description was cautiously optimistic. While she didn't want to give a definitive diagnosis without the pathology report, which is due Tuesday, she did give the group some hope from the sounds of it. From what I got from the confusing conversation with Collin since he was talking to me in the phone and Beth and Kiwi on his end, the oncologist thinks it may be one of three things, which are all treatable. Apparently one goes away on its own without needing treatment. Obviously we're rooting for that one. From the MRIs (I think), she seems to think that the cancer hasn't spread beyond the tumor on Ben's spine. As such, she has decided not to do a bone scan for now. If the pathology report warrants one, then it will be done then. I think that all I've got for now. Like I said, a much needed reprieve heading into the weekend.

F*ck cancer! I ride with Clyde!

-Uncle Jake

My Efforts, So Far...

First some background:

My name is Jake. I know Ben, Jenny, and Dave through Beth and Collin, Ben's actual aunt and uncle. Collin and I were roommates for four years while attending Santa Clara University. I have known Ben since his birth. I was at Dave and Jenny's wedding. They are my family, and I am lucky enough to be considered part of their family as well. I am for all intents and purposes, Ben's uncle.

Some of you may be wondering where the name/motto "Ride With Clyde" comes from. This we owe to another of our friends, a young man by the name of Caleb. When Jenny was pregnant with Ben, but before Jenny and Dave knew they were having a boy, Caleb decided the baby was in fact a boy and named him Clyde. Many of us took to calling the baby Clyde and the nickname stuck after Ben's birth. So "Ride With Clyde" is our way of saying we support Ben and his family during his fight with cancer.

I live in California in the Bay Area. Because of obligations here this weekend, I am not currently able to be in Portland to help out. Instead, I'm finding ways to help from here. Today I spent the day on the phone with the IRS setting up a company to basically accept donations and profits from t-shirt sales (I'll get to that stuff shortly) and then at US Bank in Half Moon Bay setting up an account for said company. The company is named Ride With Clyde - Battling Cancer With Bennet Epperson. Its purpose is to raise funds to help cover costs incurred by Jenny and Dave during Bennet's fight that are not covered by health insurance. So far I have come up with a few ideas on how to raise these funds and will outline them now.

Fund raising efforts:

The first thing I came up with was the idea of t-shirts. So far I've come up with ten designs that in some way support Ben in his fight with cancer. Not only can you wear the shirts to show your support, but $5 of every purchase will go into the Ride With Clyde account. The rest of the purchase price covers the base price of the shirts on the cafepress.com's site. I make no profit off of these shirts. Each shirt has its own "shop" and the shops are as follows:

http://www.cafepress.com/IRWCDeluxe - I Ride With Clyde Deluxe
http://www.cafepress.com/IRWCH - I Ride With Clyde Hearts
http://www.cafepress.com/IRWC - I Ride With Clyde Basic
http://www.cafepress.com/BBGD - Benny's Buddies Go Ducks!
http://www.cafepress.com/BennysBuddies - Benny's Buddies Basic
http://www.cafepress.com/BSFightsCancer - Blue Steel Fights Cancer
http://www.cafepress.com/BEBS - Baby Epps Blue Steel
http://www.cafepress.com/EffCancer1 - F*CK Cancer!
http://www.cafepress.com/FECKCancer - FECK Cancer!
http://www.cafepress.com/HCEffU - Hey Cancer, F*CK You!

Please check them out, and if you like them, buy them. Your money will be going to a great cause. And if you have suggestions for other designs shoot them my way. If you want other color options of current designs let me know that as well. As Dave and Jenny are grads of UO, requests for Beaver colored items will be ignored. =)

The second idea I came up with was really this company and its accompanying bank account. I set it up so that people who want to can make straight donations to help support Ben, Jenny, and Dave. Information on how do make donations can be found to the left under Donate to Ride With Clyde! Donations of any amount are appreciated and accepted. Anything will help.

The third idea I had is an idea for an actual fundraiser and involves me personally. I'm not quite sure yet how I'm going to pull it off, but I'll outline my idea and again accept suggestions as to how to fine tune it. So, I have been growing my hair out for over a year. It is fairly long. In fact Ben's cousin Reagan likes to tell me, "Uncle Jake, you look like a girl!" She may be right, though I don't know a lot of girls with beards. Anyway, my plan is to shave my head to show support and solidarity for my nephew during his fight with cancer. I was thinking people could make donations/bids and suggestions for various hairstyles I could get on my way to finally shaving my head. And when I say I'll be shaving my head I mean with shaving cream and a razor, not clippers. I can post not only pictures here on the blog, but also suggestions for hairstyles which people can then vote on. I'm thinking we may also have an auction of some sort with the winning bidder getting to do the actual final shaving of my head. Logistically this may cause some problem as I am in the Bay Area. But I am willing to travel to wherever Ben is for the head shaving. I ask that the winning bidder be willing to do the same or at least designate someone in the area to do the shaving. I may also let multiple people do the shaving if we have numerous people bidding for the privilege. I do have one added condition, my blood will cost you a little extra, but not a lot. Which means, if during the final shaving you make me bleed, you will be charged a penalty (of a couple dollars). I think that it for this idea at this point. I set up a fundraising site here: http://www.crowdrise.com/RideWithClyde. I'm having a hard time getting it to work though, so I think I may run the fundraiser through this blog. Lastly, if there are any of you out there that would like to join me in shaving my head, speak up! We'll find a way to add your head shaving to the fund raising efforts!

Oh, just a quick update on Benny and everyone else at this point. As far as I know we're kind of in a holding pattern until Tuesday. While we know the tumor on his spine is cancerous, we won't know what kind of cancer we're dealing with until the pathology report comes back on Tuesday. I believe Jenny and Dave met with an oncologist today, though I'm not positive. I believe the introduction of an oncologist brings with it new tests to be done in hopes of helping determining what kind of cancer it is and possible courses of treatment.

I guess that's it from me. F*ck cancer! I ride with Clyde!

-Ben's Uncle Jake