VAF Forums

VAF Forums (https://vansairforce.net/community/index.php)
-   RV General Discussion/News (https://vansairforce.net/community/forumdisplay.php?f=2)
-   -   VAF "Make a Wish" Request.. (https://vansairforce.net/community/showthread.php?t=85196)

ppilotmike 04-16-2012 11:32 AM

VAF "Make a Wish" Request..
 
I am writing to ask for help from the VAF community for a special 15 year old kid I know. His name is Alex Cuellar and he is currently battling an unknown type of malignant brain tumor. Here's some pictures and a brief bit of his story, from his mother, Michelle:
https://picasaweb.google.com/1094144...51422752806482
https://picasaweb.google.com/1094144...51423410013986
https://picasaweb.google.com/1094144...95420233493906
"Alex was born to proud parents, Michelle & Alejandro Cuellar, on August 29, 1995. On August 16, 2011, he was diagnosed with a very rare malignant tumor in the brain called Atypical Terratoid Rhamboid Tumor (ATRT for short). The doctors began very aggressive treatments using chemotherapy and radiation. Alex was hospitalized for several weeks with complications. His blood cell count dropped so low, that he had to receive multiple blood transfusions. As if to add insult to injury, genetic testing later proved that it was not ATRT, but an unknown malignant brain tumor. The doctors determined Alex could no longer be treated with chemo, because it made him so sick, and suggested immunotherapy might be the only option. Luckily, before immunotherapy treatment, the doctor called for another MRI. The tumor had stopped growing. They decided to stop all treatment and let him heal. Alex continues to get MRI’s every 3 months to make sure there is no tumor growth. His big challenge right now, is to gain weight. He currently weighs only 96 lbs. Getting back to his “normal” weight will be a slow process, because Alex has difficulty eating solid foods. He is only drinking instant breakfast shakes and eating soups. Before Alex was diagnosed, he was enrolled in flight school, earning hours towards his private pilot's license. He wishes to get back into flying, so gaining his strength back will help. The other problem is that this tumor was pressing on the third nerve, so he had vision issues at first, but it seems to be recovering. We hope that it fully recovers, because Alex wants to become a commercial pilot when he grows up."

Alex is a good kid, who loves airplanes. When he heard we were building an RV-10 in our garage, just had to come and see it. I conducted a short "Aircraft Building 101" course for him in my shop. I taught him how to measure, match-drill and drive all types of rivets using various methods. I showed him pictures of all the planes you could "build by yourself" in my Vans Book of RVs. Then, as is always inevitable when people like us talk about experimental aircraft, we talked about Oshkosh. As an EAA member, Alex was already on top of it, rattling off all kinds of information about this year's event. I asked if he'd ever been to OSH. He answered "no", and said it probably wasn't financially possible. I asked, "if you could go, would you be healthy enough to go?" He said he would certainly try. I told him "don't give up" and "if you can get to OSH, I promise you won't be disappointed." As he left, Alex told me he would ask the "Make a Wish" people, and that hopefully he would see me there this year...

My request is simple.. Assuming he can keep getting better, and that his doctors and parents sign off on it, is there any way we can get this kid to Oshkosh this year in an RV?

DakotaHawk 04-16-2012 11:55 AM

(I'm assuming from your profile that Alex is from Denver, CO)

This sounds like a great idea! Seems that there would be a list of "opportunities to volunteer"...

1) Flight from Denver to Oshkosh
2) companion to accompany Alex while at Oshkosh (wheelchair?)
3) Overnight accomodations (camping in Camp Scholler, homebuilt camping, or local hotel)
4)Return flight from Oshkosh to Denver.

Some questions that would need to be answered...
1) How mobile is Alex? Does he need a wheelchair or walker?
2) What dietary concerns would need to be dealt with? Food at the food courts aren't the healthiest!
3) How long a visit can Alex handle? Are we looking at one day, three days, or the full week?

ppilotmike 04-16-2012 12:04 PM

Ball Rolling...
 
Scott,

All good questions. Here's my attempt at answering them.

1) How mobile is he? When he came to my shop, he was walking and standing while working. However, he needed to take breaks to sit (before falling) due to fatigue and nausea. He's on the mend, and will likely be walking fine (at a slow pace) by OSH time. I would imagine the trams and buses will be used to get around on long hikes.
2) Dietary concerns? Hopefully by then, he will be eating solid foods more regularly. He will likely need suppliments of some sort to keep gaining weight and strength. No burgers I'm guessing, but perhaps a soft-serve or two..
3) How long a visit can he handle? I'll have to check with his parents for this. It may be more dictated by his doctors than him. He'd probably go till he drops...

TS Flightlines 04-16-2012 12:47 PM

mike---you are an awesome guy for thinking of this young man and his dream.
I'll bet there is someone with a RV10 that could take him AND a parent/guardian to OSH. I bet that facilities could also be arranged for camping, food. etc/ The VAF family has always come up with 'out of the box' solutions----and I bet this is another one. If I had a 10--i would.
Tom

RBD 04-16-2012 12:55 PM

Just want to point out...
 
that this isn't really a "request".....more of an "opportunity!" :) I have full confidence that this awesome community will make this happen; and for those that are ultimately involved, I imagine the experience will be even more rewarding for you than it will be for Alex.

With no RV and no plans of attending Osh, not much I can do to help...other than cheer this effort on from the sidelines. So go team go, make this happen! :D

rv7charlie 04-16-2012 12:59 PM

Great idea, if he can handle the trip.

Here's something that we can all do that's a lot closer to home for all of us, and requires minimal investment of time/money by individual pilots. (Though it requires significant organizational efforts to set up a session.)

http://www.operationprop.com/

If anyone's interested in duplicating the effort, I can put you in touch with the organizer here in MS. Based on what I've seen here in MS, the line from Field of Dreams really does apply: "If you build it, they will come."

Charlie

tkatc 04-16-2012 01:10 PM

I am not going to Oshkosh this year nor am I in the right region of the country to help out. BUT I could probably help out monetarily if that should prove to be required in some fashion. Keep me posted.

Mile High Relic 04-16-2012 01:15 PM

I'm sure we can come up with a plan.
 
Mike,

Tom's thought on a 10 and taking more of the family is really a good one. Even if a 10 can't be found, I bet we can find more empty seats.

I am planning on KOSH this year, but right now I only have an empty seat between Denver (KBJC) and Minneapolis. The current plan is to pick up a friend in Minneapolis, the CFI that taught me to fly, and then head to KOSH. That could change though, or I could just rubber band back to Minneapolis if that is the only option.

I can bring this up at the EAA43 lunch at KBJC on Wednesday, (or you could too) and see what everyone thinks. I know there are a bunch of people planning to go this year.

The RV1 is scheduled to be here on 5/30 and that might be a good time to get everything lined up, while a bunch of the RV community is hovering around Jim Gray's hangar.

Also, I have a brother in Green Bay, and he's is usually willing to put me up for a day or three, as well as whoever I'm traveling with. That isn't exactly the KOSH experience, but it may be better than camping in this situation. Once the planning and requirements firm up, I can check on that if necessary.

John

Paul K 04-16-2012 01:18 PM

Don't know if I will make OshKosh or not and I am in the wrong direction. I can make a donation to help if needed.

Keep us all posted.

rleffler 04-16-2012 01:41 PM

Mike,

You may want to talk to your EAA chapter and/or Jeff Stiles at national.

As part of Young Eagles, chapters earn credits to send kids to EAA summer camp. If your chapter is active, you can generally cover the camp fees and all you have to fund is transportation.

Some chapters don't allocate their earnings, so national will distribute them too.

I suspect the week of OSH is probably booked, but worth investigating.

bob

ppilotmike 04-16-2012 01:58 PM

Ball rolling...
 
I'm glad to see a lot of responses. Bob, I have put the word out to my local RV'rs so we'll see what kind of response we get. Several people have offered to pledge towards their expenses, but I'm not sure how to take them up on that, since I've never done anything like this before... Perhaps donations could be sent to Doug Reeves on behalf of Alex and then he could send the check when the time comes...? I'm open to suggestions.

N15JB 04-16-2012 02:14 PM

Mike,

I am not going to OSH this year, but my -10 is based at KAPA. I would be happy to give Alex and/or his family a local flight.

Jim Berry
RV-10

ppilotmike 04-16-2012 04:04 PM

Good idea.
 
Quote:

Originally Posted by N15JB (Post 650563)
Mike,

I am not going to OSH this year, but my -10 is based at KAPA. I would be happy to give Alex and/or his family a local flight.

Jim Berry
RV-10

Jim,

I think that would be excellent idea! A local flight in a 10 would be great for Alex and good preparation for the long CC (and his parents too for that matter). Give me a call and we'll set it up..

(720) 933-3452

apatti 04-16-2012 06:26 PM

Quote:

Originally Posted by tkatc (Post 650540)
I am not going to Oshkosh this year nor am I in the right region of the country to help out. BUT I could probably help out monetarily if that should prove to be required in some fashion. Keep me posted.

Ditto. Ditto.

rockwoodrv9 04-16-2012 06:58 PM

sounds like a good plan
 
Mike, Let me know if you need anything. Great idea and plan. I can help with fuel or other costs if needed. Let me know when a flight is set up. I would love to come over for support.

videobobk 04-16-2012 07:57 PM

Just another "me, too" response. I will certainly kick in here, gas, tickets, what ever you need, just fill us in. I also want to invite him (and you and the family) to come meet our guys, the youngest builders there, the Eagle's Nest crews. Some are younger than he is. They need to meet him as much as he needs to meet them. Keep us informed with your needs, and your plans. This will be a special Oshkosh, I pray the first of many.

Bob

gtmule 04-16-2012 08:20 PM

Quote:

Originally Posted by apatti (Post 650640)
Ditto. Ditto.

And ditto again (that's two for Middle GA, none for Atlanta! :) )

Edited to say that it might be better, if he's still feeling crummy this summer to have him fly commercial to Chicago or the Twin Cities then take him to OSH via RV. An option to keep open anyway. It's a long trip, even by RV from Denver to OSH, esp during the hot summer. If nothing else I'd hate to have weather issues, etc make him miss too much of the big show.... Of course if he's up for it, then round trip by RV would be awesome, but I've done some Summer XC's where by the end I was ready to give up flying for good...and I don't have brain cancer....

cjensen 04-16-2012 08:47 PM

Happy to help from the HQ side...keep me informed on the progress and I'll do what I can to make sure he has a special visit. :cool:

rwarre 04-16-2012 09:16 PM

Plan on going
 
I am going to Osh in my RV7A. Would be able to take a family member if needed. Also would donate towards gas of whatever expense.

339A 04-16-2012 09:42 PM

Young Eagles at KFTG
 
Hey Mike,

Chapter 301 has a Young Eagles day scheduled for 4/28/12 starting 8:00 AM. If he can make that, I know we will be able to take care of him. We can "test the water" as well to see how he does. From there with help from VAF community and Chad at HQ I'm betting we can get him to OSH.

Regards,

rjtjrt 04-17-2012 12:41 AM

I'm a fair bit distant, and not going to Oshkosh but I would love to help this young man.
If there is some way to send a monetary contribution count me in.
John

ppilotmike 04-17-2012 08:24 AM

Thanks to all...
 
I am so very proud to see the goodwill of this community! It's inspirational to me and incredibly positive for Alex and his family.

Looks like there are many things brewing here in Colorado, among the local EAA chapters, Young Eagles Volunteers and several local pilots and friends. I am trying to take it all in and put something together for him in an organized way. Transport to/from OSH is what I'm working on now. Once we have that, it will be figuring out accomodations, day tix and ground transportation (if needed). Also, some local flights to "test the waters" and his health are in the planning stages. I will report back as things develop. If there are expenses outstanding, we can discuss the financial help so many of you have offered. Scott, I'll plan with his family to get him to the YE day at Front Range on the 28th. Chad, anything you could do to help once he arrives at OSH would be great. Stay tuned.

P.S. Thank you to everyone for actually being the kind of people I've often said you were...

Mike

RVbySDI 04-17-2012 09:08 AM

Quote:

Originally Posted by cjensen (Post 650682)
Happy to help from the HQ side...keep me informed on the progress and I'll do what I can to make sure he has a special visit. :cool:

I am another "me too" candidate. I will help in anyway I can. Just let me know.

I don't know anything about the logistics of this idea, but, would it be possible to house this guy and his parents (if they come also) in the Air Academy Lodge during his trip to Oshkosh?

This sure sounds like a doable project for EAA to pull out the red carpet treatment for this family with lodging, tickets to the show, front row seats for the airshow, meet and greet with airshow performers, etc. Chad, what do you think?

Flyin'Bryan 04-17-2012 02:08 PM

More upcoming opprtunities to make this happen....
 
Quote:

Originally Posted by 339A (Post 650697)
Hey Mike,

Chapter 301 has a Young Eagles day scheduled for 4/28/12 starting 8:00 AM. If he can make that, I know we will be able to take care of him. We can "test the water" as well to see how he does. From there with help from VAF community and Chad at HQ I'm betting we can get him to OSH.

Mike, as Scott has pointed out, and as I am sure you are already aware from the emails from the Colorado RVList group, Scott and Gary have already engaged the Chapter 301 YE coordinator, and emails have been forwarded to HQ as well.

As Scott mentioned, if he is well enough, the next YE Rally at Front Range Airport on the 28th of this month would a fantastic "local" opportunity for him. And if that one is too soon, there is another one in May that he can shoot for. I also wanted to add that the monthly Chapter 301 meeting is this Friday, at 7:00pm, at the South Metro Fire Rescue Authority Building: 9195 East Mineral Avenue Centennial , CO 80112. It is right near the IKEA store and is fairly easy to find. If you or the family want to come to the Chapter meeting to continue to spread the word about this, then this is yet another opportunity. UNfortunately this is one monthly meeting I will miss due to other commitments, but I will be at the YE rally on the 28th.

Of course you already know I am going to OSH by ground for year number 4, and I will be in Camp Scholler for the entire week. Just me and the kid driving up, so I have room for persons or cargo needed for this endeavor as necessary. My only limiting factor is that I will be there for ALL of Oshkosh, plus 2 days to drive up and another 2 to drive back. I am sure that logistics for any ground hauling for a shorter duration can be worked out as well.

Lemme know buddy! Amazing what happens when you ask for something from this fine group of RVators!:D

Paul "OX" Harder 04-17-2012 05:23 PM

Mike,
I live in the Denver area and am planning on making KOSH this summer. I may have an empty seat in my RV-8 and would be happy to help if I can. I know several RVators heading to the big show and maybe we could get a couple of RVs involved to get Alex and a parent/gaurdian out there. Let me know!

ScottSchmidt 04-17-2012 09:33 PM

Me too.
 
I am heading out but have all the seats filled but would be more than willing to help pay for gas, food, lodging or anything else I can do.
Maybe we can each sponsor a day (tickets, food, lodging, t-shirts, ect.....)
I can definitely take him for a ride at the show with a few other planes but we really need to get him in a P-51 at Oshkosh!

ppilotmike 04-18-2012 11:52 AM

Alex to OSH
 
Quote:

Originally Posted by ScottSchmidt (Post 651016)
I am heading out but have all the seats filled but would be more than willing to help pay for gas, food, lodging or anything else I can do.
Maybe we can each sponsor a day (tickets, food, lodging, t-shirts, ect.....)
I can definitely take him for a ride at the show with a few other planes but we really need to get him in a P-51 at Oshkosh!

Scott,

Thanks for the offer. I am already trying to setup some rides for him and his family here in Colorado to gauge his health for a long CC to OSH. Jim Berry was kind enough to offer up a local flight in his RV-10, hangared out at Centennial. After that, it's setting up seats for him and at least one guardian to head to OSH and back.

Flyin'Bryan 04-29-2012 08:10 AM

Update - Step one - Local RV Flight Accomplished
 
I think that Mike may update this thread with additional info, so I won't steal too much thunder here, but since I was online I figured I would update everyone. After the original post and overwhelming response from the VAF community, some wheels were quickly put into motion to get Alex Cuellar up in an RV.

Well, that all came together yesterday when he showed up at KFTG during the monthly YE rally for Chapter 301. He was assigned a flight in an RV-6A owned by Gary Zilik, N99PZ, and the reports I received were that he had an awesome one hour flight.

Since I am a firm believer in the philosophy that flying is good for the soul, I am hoping that this will serve as the launching platform for continued efforts to get this young man up to Airventure this year.

Paul Walter 04-29-2012 05:58 PM

Being down under, obviously there is nothing I can do apart from a donation. If this kid wants to go to Oshkposh - lets get him to Oshkosh. Please let me know of trust account details or what ever is being set up for this cause.

rockwoodrv9 04-29-2012 06:21 PM

I was there too
 
Bryan,
I was at the YE flying day too. It was very well organized and Mike introduced me Alex and his mother. He had a great flight with Gary. A fun day for all the kids for sure.

ppilotmike 04-30-2012 08:59 AM

Alex to OSH 2012
 
YE Day was definitely a success, but also the YE ground school meeting the night before. A BIG THANK YOU to Rudy Kniese of EAA Chapter 301!

Alex got a really long flight, some stick time in Gary's beautiful RV-6 and didn't suffer from nausea or vertigo at all. I think he and his mother both had a very good time. He seems to be getting a lot stronger now that the chemo treatments have stopped. He still can't eat much solid food, and he needs to put on a lot more weight, but if he continues the way he's going, he should be in good shape for Oshkosh. While we are hoping for the best, since the tumor can't be removed, his health could change pretty quickly with little warning. He has another checkup MRI in a month, so hopefully, the tumor won't show signs of any new growth.

We are still looking for RV pilots going to OSH that have extra seats to take both Alex and his father there and back. Even if they are separate flights, I think this would be okay. Worst case, we can look into a commercial flight, although I'm still not sure how to take donations for something like that. This would also introduce additional logistics to get them from/to the airport in Milwaulkee. The word is still out on EAA hosting him and his dad while they are at OSH (i.e. tickets and such). So far, a local Christian School nearby has offered them lodging and transport to and from Airventure, so that is great! I'd really like to firm up the travel plans though, so all the rest can be firmed up too. They are completely flexible as far as the days they attend.

Thanks to everyone for your continued support.

zilik 04-30-2012 02:45 PM

A pilots perspective
 
It was a cold windy morning in Denver last Saturday, 43F and wind 270@22G30, a perfect morning for Young Eagle flights. Yeah right. I was standing out by my plane talking to some of the ground crew when our YE Coordinator came running out of the terminal and I new it was me he wanted to talk to.

"Gary, have you met Alex yet?. Well your about to as its your turn to fly" I went to the terminal with Rudy and met Alex and his mother. We walked out to the plane with Alex shivering the whole way. He strength was not great so I had him crawl up the wing (no step 6A) and help him into the seat. I quickly jumped in my side and closed the canopy to get us out of the wind. With the sun through the canopy Alex quit shivering. Engine start and marshaled out of the parking spot and we're off on our adventure.

While taxiing I queried Alex about his current health and we talked about the upcoming flight. During run-up ground asked another pilot if it was bumpy today and the reply was, Yes, very bumpy. Oh great.

After a short hold for landing traffic we were cleared to takeoff on 26 with a right turn to downwind. Takeoff was short with the 22G30 knot wind and the climb to crosswind was smooth. We had 5 miles before we got out of the Class D and into the Class B. This went fast as the winds at 6500' pushed us along at 190kts across the ground.

Once into the 7000 foot ceiling of Bravo I turned NE and demonstrated to Alex how easy it was to fly an RV. After a couple of minutes I said the airplane was his and had him practice some turns, first left then right. The bumps turned into lumps which was good. Alex was a natural. I don't say that about many kids but Alex maneuvered without the standard altitude deviation of most YE's. At this point I told Alex that if he was my only YE today, so be it. We turned north till we hit the Platte river and followed it NE for a while and practiced more turns doing slow s-turns till we got sick of s-turns. We eventually headed back to the airport and after 1:05 from takeoff to landing we were back. I think Alex enjoyed his ride.

Alex is a bright aviation oriented 16 year old with more courage than I. He's facing an unknown with his tumor but is upbeat and generally a happy young man with dreams of going to Oshkosh. I hope we can get him there.

Extraordinary Young Eagles are few. Alex is one that I will always remember.

rockwoodrv9 04-30-2012 06:22 PM

Thanks Gary and Mike
 
Gary - I spoke with Alex after you gave him the ride and he was thrilled. What a great thing for him to remember. He will get to Oshkosh one way or another!

Thanks for showing me your very nice plane.

N15JB 04-30-2012 07:14 PM

Gary, you must have shown Alex a good time, because he is ready to go again. We have him scehduled for a flight Saturday AM in my -10 at KAPA. His mom said he was thrilled with his flight with you, and she was very appreciative.

Jim Berry
RV-10

339A 04-30-2012 07:33 PM

Glad to hear that Alex made Young Eagles and Gary got to take him up. :D Sounds like he really loved it and already has another ride in the works. :cool: Unfortunately I missed YE's this past weekend, got called away to Oklahoma on Friday... Well gotta pay the bills so I can keep flying.

Really good to see the effort being put into this by the everyone here on VAF. Now if we can get EAA to do the same!!

Regards,

Michael White 05-01-2012 10:15 AM

Seismo,
As our Aussie friends would say, "Good on ya, Mate!"

zilik 05-01-2012 11:08 AM

Quote:

Originally Posted by N15JB (Post 654947)
Gary, you must have shown Alex a good time, because he is ready to go again. We have him scehduled for a flight Saturday AM in my -10 at KAPA. His mom said he was thrilled with his flight with you, and she was very appreciative.

Jim Berry
RV-10

Jim,

Alex had no problems with vertigo or nausea during his YE flight. He loves flying and I know he'll enjoy your 10. He's a great kid. You'll like him.

zilik 05-01-2012 11:09 AM

Quote:

Originally Posted by Michael White (Post 655133)
Seismo,
As our Aussie friends would say, "Good on ya, Mate!"

Thanks Moose, but the kudos really needs to go to Alex.

Flyin'Bryan 05-01-2012 05:27 PM

Careful what you wish for......... :)
 
Quote:

Originally Posted by N15JB (Post 654947)
Gary, you must have shown Alex a good time, because he is ready to go again. We have him scehduled for a flight Saturday AM in my -10 at KAPA. His mom said he was thrilled with his flight with you, and she was very appreciative.

Jim Berry
RV-10

Jim, that is awesome. I knew that you were in the works for getting him airborne as well. I think we even have some warmer weather in store for this Saturday (Sorry Gary!)

ppilotmike 05-14-2012 08:36 AM

Alex to OSH (Update)
 
Last weekend, Jim Berry offered up his RV-10 (and his time) to take Alex and his mother flying here in Denver. It was a "Goldy Locks" day, as Jim puts it. Not too cold, not too hot, juuuuuust right. Alex is definitely getting stronger, although he still has to pack on quite a few pounds to be ready for the food choices at Airventure.:eek: Below is a link to pictures from the day. Hopefully, moderators will know how to add the actual pictures. PLEASE...
https://picasaweb.google.com/1094144...020/May142012#

As an update, I'm still seeking pilots who would have an empty seat in their RV (or other type plane) to get Alex and his dad to Oshkosh this year. If that doesn't work, we'll have to go commercial. Lodging is almost confirmed, so the only things remaining are transportation, EAA tickets and potentially ground transportation.


All times are GMT -6. The time now is 11:47 PM.