The Fund for Aaron

Aaron Jo: 12/28/1975 - 6/23/2008

2008-06-27T19:57:00.004-04:00

Well, Aaron did get to go to Disney. She, Glenda, the kids and Paula (friend and Hospice aide) with Paula's daughter flew to Orlando on June 2. Aaron's brother Adam and his wife Shauna met them there. Aaron was well enough to only go on one ride - but Tif had a wonderful time with Adam and Shauna and Kyle had a lot of fun with Paula. Aaron was brought back to NY via ICU Jet on Thursday and immediately went to the hospital.

She had ups and downs over the course of the next two weeks. Ann Marie came from Denver as did Aaron's dad. Aunt Kim came from KY for about a week. Two weeks to the day that Aaron came back to NY, she started telling us goodbye. On Friday she slept all day and Saturday and Sunday were hard days for her. As hard as it was for me to watch Aaron struggle for every breath, I can not begin to imagine how it felt for her family.

She kept her sense of humor up till the end with occasional wisecracks and jokes. At one point on Sunday she turned to her mom and asked if she was an angel. Glenda said "no, baby, you don't have your wings yet." Aaron sighed and said "I don't want to be an angel." I have so much admiration and respect for Aaron - she rarely complained, she hardly wanted to ask for something from anyone even the last few weeks when any one of us would have tried to get the world for her. She certainly fought the hard and good fight.

Aaron passed away just about 7:00 AM on Monday, June 23, 2008. Her funeral service was held yesterday afternoon, three weeks after returning from Disney. The service was conducted by the Spiritual Director of Hospice. She read some poems chosen by Ann Marie as well as some she chose. A video tribute was played and some memories of Aaron were shared. She would have loved the video as well as the gathering afterwards.

I am a better person for having Aaron in my life. She sometimes drove me crazy, but I always loved her. She will be missed. Eventually I will add some more stories about Aaron for her kids. I think it will be a little while before that happens though.

Below is Aaron's video montage.

Florida, at last!

2008-05-06T19:52:00.001-04:00

Aaron told me this afternoon that it looks like they will be going to Florida the first week of June! She is thrilled, needless to say!

Tiffani is a star!

2008-04-29T19:59:00.002-04:00

Been awhile, I guess. Aaron et al are moved into their new home. It is really nice - off street parking, 3 bedrooms, fenced in backyard, sunny living room, big kitchen, just a great place all in all.

But, for today's news- it is all about Tiffani! Tif has been doing archery at school and received an award for "Most Improved" with her name engraved and everything! And also, she is now a published artist! A drawing Tif did was chosen to be in a book called "Kites and Kings." "Kites and Kings" is put together by the elementary schools from Downsville to Schoharie - and all the schools in between. (Over 100 miles apart). Tif drew a photo of Evanessence lead singer, Amy Lee, with pencil and was asked to submit it to the book. She did, it was chosen and it is a very Big Deal! Yay! Congratulations, Tif!

Aaron update & Relay for Life

2008-03-15T14:49:00.003-04:00

There is good news and 2 bits of not so good news and then some more good news.

The good news is that the chemo Aaron has been on has kept the new mass from growing. Not so good is that they found a small spot on her liver. But the chemo may be keeping that at bay as well. And not so good news # 2 is that she somehow managed to break her foot - without actually doing anything that would ordinarily break a foot. Aaron and the kids have temporarily moved in with Glenda as Glenda's apartment only as 5 or so steps to conquer- and Aaron's old apartment was on the second floor. The second bit of good news is that Aaron found a three bedroom apartment on a ground floor. The apartment is apparently beautiful and well maintained. If you don't live in a small college town, you may not realize that this is a major find. It is a HUGE deal here. It sounds like it will be a good place to live with a good landlord. They will be moving in a couple of weeks.

Last night in Oneonta, the first ever SUNY Oneonta/Hartwick College Relay for Life was held at the Dewar Arena. I am pleased to say that my team - composed of co-workers - came in second place with the amount of money we raised; over $4500! Three of us managed to stay the night and I think we were all amazed at the amount of energy the college students had at 5:30 this morning. The event as a whole raised close to $50,000 and apparently was one of the best inaugural college events (for comparable sized colleges) that the American Cancer Society has seen. I had hoped Aaron would be able to participate in the survivor lap, but she has the flu. It was an emotional moment as the participants cheered and clapped for the survivors as they made their way around the arena.

Life goes on

2008-02-11T21:11:00.001-05:00

For those of you still checking here, (I'm looking at you, Caroline!) I apologize for not updating.

Let's see what there is to say- well, Aaron et al had a great time in Colorado. Aaron, Ann Marie and Troy with Ashley, Crystal, Shelby, Kyana, Dustin and Kylee went to an Ozzy Osbourne & Rob Zombie concert several nights before leaving Denver. Ann Marie got them seats they were all pleased with. Dustin said it was the best night of his life. He also strained his neck after all that head banging. Coming back to NY, Aaron and Glenda upgraded to a sleeper and that made the journey back a little more fun.

Christmas was laid back and relaxed, as were Aaron's and Tiffani's birthdays. Aaron's brother, Adam got Aaron a Cotton Candy maker for Christmas, so she can now have cotton candy on a paper cone whenever she wants!

Aaron has been continuing the chemo started in Colorado. It makes her very tired and the steroids she is taking have caused her to become a bit swollen. Walking is very difficult. On the positive side, the last time she had an x-ray, the mass had not grown. She will have chemo again this Wednesday and a CAT scan sometime in the near future.

It is the season for Relay for Life. I will be walking in it in Aaron's honor, as well as a number of other friends dealing with cancer and for several friends who have passed away. If Aaron is not in Florida the night it occurs here, she plans on doing a circuit or two with me. If you have a Relay for Life benefit in your area, take part!

Colorado news.

2007-11-28T17:20:00.000-05:00

Glenda called this afternoon from Colorado. They will be home via train on December 8th. Aaron is now fighting pneumonia. The doctors in CO did all sorts of scans and discovered that the cancer has spread to both lungs and the original mass is bigger than ever. She started a new form of chemo as soon as they got out there and had one treatment. She will have a second treatment as soon as she gets home. Send positive energy and prayers. She needs them.

Colorado

2007-11-22T09:08:00.000-05:00

For the people who are still checking in here, I apologize for not updating more. Aaron, Kyle and Glenda left for Colorado the first week of November. Tiffani is staying with her dad for the month. Meggie (the dog, of course!) is hanging out with us.

Before Aaron left, the doctors discovered the Tarceva was not working anymore and the spot had grown a bit. She was taken off the Tarceva and arrangements were made for a new course of chemo to stat while in Colorado. The hospital she was going to is where Tarceva was developed, so that is rather cool. Everyone here in NY was great in helping to make sure that all of Aaron's needs would be met while in CO. - The oxygen company gave them 3 travel tanks and arranged for oxygen to be delivered to Ann Marie's house.

In my last post, I misspoke about the blood clot. Apparently she had arrhythmia, not a clot. Not quite sure how I got that wrong. Glenda and I have not spoken since they've been away, so I do not know Aaron's current status.

It seems a little ironic to write Happy Thanksgiving, but have a happy day. I'm off to make pies.

Shingles

2007-10-28T20:52:00.000-04:00

Aaron had a rash on her back which Glenda didn't like the look of- so off to the hospital they went this morning. And shingles is Aaron's latest nuisance. I guess that is better than the staph infection Glenda was worried the rash might be. She also got to have an MRI as well as a CAT scan as she had a new lump the doctors thought might be a blood clot in her lung. And fortunately, that was just some sort of reaction to either the Tarceva or the steroids. Sigh.

Aaron, Glenda and Kyle are off to Colorado in about 10 days to see the rest of the family. Tif will stay here with her dad and the dog moves in with us.

An update

2007-10-20T16:56:00.000-04:00

Things have been quiet around the Fritzler household this week. I called for an update just now and they were in the midst of their weekly "Smallville" episode viewing. The big news is that Kyle has been successfully working on potty training.

Aaron and Tiffani went to see "Dracula" last weekend at the Foothills Performing Arts Center complete with Gothic brunch. Aaron and Tif share a love for the macabre, shall we say.

Mary Pat asked how the fund raising is going and how long till Aaron gets to see Mickey. She actually should be able to travel very soon and will be going west to see family in Colorado next month. Glenda, Aaron and Kyle will be out there for a month. I think Tiffani will stay here and maybe alternate between her dad's, a friend and us. All that to say, I really don't know when they will get down to Fl! It gets so cold and miserable here during the winter that it would be a great treat if they could all go down maybe in January or February.

Aaron's doctors at the Fox Care Center here are putting up some posters that Ann Marie made, which is wonderful! Hopefully this might spur the last bit of fundraising on.

I was at the laundromat the other day and saw a woman who had obviously had a double mastectomy and was going through chemo. Her t-shirt said "Cancer, you've picked the wrong bitch". Loved the fighting spirit! I need to find a t-shirt like that for Aaron.

Hallelujah!

2007-10-08T16:41:00.000-04:00

It looks like the Tarceva is working! The spot on Aaron's lung is smaller and she doesn't have to see the doctor for a month! Keep your prayers and positive energy coming!!

Photos

2007-10-07T10:47:00.000-04:00

Aaron's grandmother, who will always be Purr to me, but is actually Margaret, sent me a lovely letter as well as some photos. The photos were taken during the summer of 2006. I think when Glenda et al went to Colorado to celebrate Purr (Margaret) and Al's 50th wedding anniversary.
Here is Aaron & her Great Aunt Irene.

Here is Glenda with Kyle.

This is Tiffani. She is now 11 going on 18. She's very artistic.

The System

2007-10-04T10:27:00.000-04:00

Aaron had a phone call the other day from US Cares which is somehow related to Social Services. They were very concerned as they had heard that this fund existed and wanted to make sure none of the money was actually in Aaron's or her chidren's name. So, if you wondered why you made a check out to me or your paypal receipt had my name on it - this is why. Under SSI guidelines, if Aaron were to receive any income, she would have to return an equivalent amount back to SSI. Well, I understand not cheating the system, but this I find to be a little insane. The point of this blog is to try to give a gift to someone who hasn't had anything in the way of luxuries in her life. I'm not trying to cheat the system or scam anyone.

If anyone is wondering about tax implications -all money donated is considered a gift. We are not a charity and money may not be considered a donation on your taxes. Taxes only come into the equation if someone were to donate over $12,000 at which point I would have to pay gift tax. (And if someone were to donate that much, I'd be glad to pay it!) If Aaron is unable to go to Disney World, the money will be used to help the family, but not actually given to them. For instance, the brakes on Glenda's 14 year old car might get fixed.

A new bed!

2007-09-30T21:30:00.000-04:00

I am sorry it has been so long since I've written an entry. Everyone has been ill at Aaron's with colds and stomach bugs. However, one good thing has happened! Thanks to four very generous people and a store (Drogen's) willing to slash the price on a floor model, Aaron has a beautiful new double hospital bed. Kyle was willing to snuggle with his mom long enough for me to get a couple photos this morning. I think he was a little worried that he was being put to bed.

A week from Monday, Aaron will have a scan to see if the chemo (Tarceva) is helping. Send her all the positive energy or prayers you can.

When I downloaded the photos, I discovered a photo of Kyle from this past June with my friend, Jim Loudon. Like Kyle, Jim is a trainlover and volunteers for the Leatherstcking Railway Historical Society.
Kyle and I were lucky enough to run into him when visiting and Jim gave us a quick tour.

Monday, Monday

2007-09-24T19:32:00.000-04:00

I called Aaron and asked for an update- actually, I said "I need material- what have you been up to?"

And well, not much to report. School has already taken its toll on Kyle and he stayed home sick today. As I was taking to Aaron, in the background I hear, "No, Kyle! That's Mommy's oxygen, don't touch!" Aunt Kim has apparently kept everyone in stitches while she was here, but she leaves tomorrow to go back home to Kentucky.

Getting around is still difficult, despite the oxygen, but Aaron got out for a bit, did some window shopping and enjoyed the lovely weather we are having.

I've encouraged Aaron to work on some hijinks for tomorrow. I'll keep you informed!

Sometimes email is what it seems!

2007-09-22T09:39:00.000-04:00

Our local newspaper is the Daily Star. Today, the managing editor, Cary Brunswick, wrote an article about how email is often not what it seems and is frequently a scam. I have received many an email myself from Bank of America telling me that my account needs me to "re-set it" or that I need to log into my "Paypal"/"Ebay"/"Wells Fargo" account or if I only respond and help Mr. Josef Nyerere from Nigeria I will be the lucky recipient of $12 million and I only need to send him $4000 to get that $12 million.

So, I understand if you received an email from a friend and deleted it or looked at the website and didn't believe it. But Aaron is a real person. She would never have asked you for a dime. If I was in a position to do so, she would have gone to Disney and you would never have heard about her. But, I am not in the position to do so and I need your help. In the grand scheme of things, Aaron's life has not been the most fair. And if it means helping a lifetime dream come true, I am happy to beg.

Please, do send this to your friends- ask them to donate a $1. If 3500 more people donate a dollar, we can all feel good about helping someone who needs it. And if you can't donate anything, send the email on or take a look at the ads.

And thank you.

Friday

2007-09-21T19:00:00.001-04:00

Kyle started Head Start yesterday. Glenda put him on the bus this morning bright and early. He brought a note home saying that he had a good first week at school. Seems like only the other day we were having a baby shower for him, how can he be off at school, already?

Kim wanted to take Aaron out to lunch, so as soon as Kyle got home from school, they piled into the car and went to Friendly's. Kyle announced that he wanted to go to sleep and tried to crawl under the table for a nap. School may take some getting used to!

A few random notes- Glenda was (is?) a big Elvis Aaron Presley fan, which accounts for Aaron's unique spelling of her name. (Well, perhaps not unique if you are a boy!)

Aaron has non-small cell lung cancer. Non small cell is the most common form of lung cancer. She is currently taking Tarceva which "is designed to block cell tumor cell growth by targeting the protein in your body called the Human Epidermal Growth Factor Receptor 1".

Thank you!

2007-09-21T08:02:00.000-04:00

It has been so wonderfully heartwarming to discover how many kind and caring people are in the world. People I knew in another lifetime in another country have reached out, friends from the internet that neither I nor Aaron have ever actually laid eyes on, friends who have family members going through their own struggles have responded. Awesome is such an overused expression, but it really does fill me with awe.

Aaron has been enjoying having her Aunt Kim here, whom she hasn't seen in ten years. When I spoke with her yesterday, she was still having a hard time physically as she gets exhausted very quickly, despite the oxygen. However, she was in good spirits and even answered the phone with a cheery hello.

If she is still on oxygen when we have raised enough money, it will be hard to find an airline willing to take her as a passenger. However, to that end, we have a pilot who has volunteered to fly her, Glenda and the kids to Fl. So, one potential problem I was concerned about is solved! Aaron does think she will be off the oxygen soon though.

A little more information and a photo.

2007-09-19T19:15:00.000-04:00

The overwhelming generosity that has been shown by family, friends, and the internet at large has been amazing and heartwarming. While talking with Glenda today, she said she just didn't know what to say. And I would have to concur. "Thank you" doesn't seem like enough. Amy had a suggestion to check with Disney and perhaps they would help. I thought that was a wonderful idea and will do that.

Aaron has never smoked, to my knowledge, she has never even tried a cigarette. 10-15% of people with lung cancer have never smoked and Aaron is in that unlucky category. For some reason, in that pool of non-smokers, more women than men will develop lung cancer.

She is 31 years old and lives in Oneonta, NY. The photo must have been taken this spring, though I am not sure of that.

I stopped by Aaron's this evening to pick up Glenda's dog who was in need of a little exercise and grabbed a couple photos to scan. I still need to find one of Tiffani, though. My good friend, Lisa Eklund, is a professional photographer and has volunteered to take some family portraits, so when those are taken, I will put those up as well.

This is Kyle. He is obsessed (and I do mean obsessed) with trains. His 3 year old birthday was this summer and every guest gave him a train toy of some sort. And oddly enough, without coordination, every toy was different!

Quick update

2007-09-19T07:00:00.000-04:00

I had hoped to get some photos scanned last night and ran out of time. Aaron's Aunt Kim is coming today for a week, so maybe I can get some family photos while she is here.

Aaron was put on oxygen last night, but it should be a temporary message while we wait and see if the chemo is helping at all.

More later tonight. And thank you all, again.

An introduction

2007-09-18T19:45:00.000-04:00

A little over three years ago, a spot was seen on Aaron's lungs. She was pregnant at the time, so not much could be done. After the baby was born, it was determined that Aaron had lung cancer. She was operated on, and went through chemotherapy and all was good. Up until this spring (2007) when Aaron discovered a lump near her lymph nodes.

Once again, Aaron went through chemo and radiation and all was good. Until a week after she finished the latest course of treatment. And another spot was discovered on her lungs. We hoped it would be pneumonia, except that it didn't respond to antibiotics and kept growing. Several scans later, it was determined to be a cancerous spot. An operation would be too dangerous as the tumor is in a place with many many blood vessels.

So, Aaron is at a point where nothing can really be done, other than treat her symptoms. Aaron's mom, Glenda, was told by the doctor that she might as well give up her apartment as Aaron will not be able to live on her own, again.

Aaron has not had an easy life. She was born with Cerebral Palsy. CP affects everyone differently. For Aaron it resulted in near blindness and very poor balance. She spent three months in a body cast as a teenager, wore leg braces for several years and has endured numerous operations on her legs and feet. One day I will get all the technical details of what she has gone through and post those.

She is 31, has a three year old son, Kyle and an 11 year old daughter, Tiffani. She has not had much money in her lifetime and has not had a lot of the luxuries that much of the US takes for granted.

However, Aaron has always had a good sense of humor and attitude about her life. There are four things she has expressed a desire for in this final stretch. She would like to taste lobster and cotton candy on a stick. She'd like a double hospital bed and she would like to visit Disney World. The lobster and cotton candy are easily doable. We might be able to manage the bed through Medicaid. But Disney World seems a little out of reach right now.

So that is where this blog comes in. I would like to raise $5000 to send Aaron, her mom and the kids to Disney World for a week. Aaron is far too old for programs like the Make-A-Wish foundation. She would never have been so bold as to ask the world for $5000. But my thought is, if it worked for Save Karyn, why not for someone who never even thought to buy a Prada bag? The trip will cost about $3500- for airfare, hotel, rental car and Disney passes. The additional money is so that they have a little spending money. If we manage to raise more than that, hey, maybe Aaron will get that bed, after all.

There is a Paypal button on the right hand side of the blog where you can donate. If you prefer to send a check or money order, email me at TheFundForAaron@hotmail.com and I will reply with an address where a check may be sent to. No donation is too small (or too big!). Please let me know if you want your donation to be anonymous, or acknowledged in the blog. Also, if you provide your address, I will make sure that Aaron sends you a postcard when she gets to Orlando. If you aren't able to donate, but would still like to help, please click and check out the Google ads on the bottom of this page. Aaron will receive a few cents everytime an ad is clicked.

Please send the address of this blog to anyone you think might be willing to donate. Aaron is currently having a reaction to the chemo she is on and cannot travel for at least a month, but I'd love to be able to send her off to Disney World in the next 6-8 weeks.

Thank you for helping me help Aaron.