How to donate

Make tax-deductible checks payable to: Help Hope Live, with "In honor of Cash Burnaman" in the memo section

Mail to: Help Hope Live, 150 N. Radnor Chester Road, Suite F-120, Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit helphopelive.org (enter Cash Burnaman into the Find a Patient field.)
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Thursday, December 30, 2010

Where we are and what we do

This is the NuTech Mediworld clinic:
 Our room is right above the doorway on the right.

This is Cash just about to get an injection.

He is not a big fan of the stem cell injections; apparently, they hurt a bit. Yesterday, he had two, one in the morning and one at night.

Two things

So we saw Dr. Shroff today and I told her Cash has been naughty. She said, "Good, that's good. That means his brain is working. Don't curb him, don't curb him at all." ! This is particularly amusing because as anyone who hangs out with us knows, we rarely "curb" him - we indulge him shamelessly.

And I was just with Cash at Physio (PT), and I was quite impressed with him walking up the stairs. He just needed a little help!

Wednesday, December 29, 2010

Lost and still not found

Cash has had three injections of stem cells over the last three days (in the morning, a nurse comes and gives him a small shot). He seems about the same - personally, I think he's been a touch grumpy. It is difficult to compare his physical progress because he does not have his leg braces, so we are actually used to seeing steadier walking from him. But he's moving around and getting into trouble. My joke with Josh is that the stem cells have all gone straight to his "naughty" center. He's constantly in the little refrigerator in our room and messing with the computers. He does love to Skype - if anyone wants to call us, my screen name is stephanie.krolick1 and Josh can be found under Josh Burnaman.

Josh is going to the airport this afternoon to look for our lost luggage. That should be an adventure.

Tuesday, December 28, 2010

In the news today

Reading the newspapers here is an entertaining glimpse into Indian culture. Yesterday there was an article detailing how many Indians are traveling to clinics in Thailand to have the sex of their babies pre-determined medically (apparently, yes, this is quite possible and with an almost 100% success rate). They are all wanting to have boys. Although they are treated like little princess when young, as adults boys are expected to shoulder all the responsibilities of caring for their parents later in life. Kind of like your 401K retirement plan in diapers.

Also, a famous actress is suing a company that produces skin lightening cream for leaving her skin blotchy. Many Indians find fairer skin more attractive. Think of that next time you are working on your golden brown tan.

We got the most exciting news of all this morning when we learned that Cash is scheduled to have his Monday stem cell injection put into his neck at the top of his spine. Tuesday he will have the injection done at the base of his spine. So far we have had three intramuscular injections and one done intravenously.

Since the injections started we have become hyper aware of Cash's behaviors and movements hoping to see some kind of change. Stephanie swears he is making better eye contact. A born skeptic, I am not so sure I see any definitive change. Yet. My optimism is by no means dampened. Stem cells or no, he is getting stronger and more active each day.

Oh the places you'll go

Cash got his first full dose of stem cells this morning and then had a full day of physical, special needs and occupational therapies. Dr. Rahoul (the special needs therapist shown in the picture) was impressed with Cash's focus. He was very optimistic about the possibilities for Cash's progress and predicted that he would be using the mouse to direct the computer in "six days, maybe less." His confidence has inspired a hope in me that I have feared to nurture for some time.

In other news, the weather here in Delhi has been abnormally foggy the past few days. So much so that it has disrupted air and ground travel and made headlines in the paper. Today it rained- well, misted- and when we tried to take Cash out for a short stroll Jyoti, the facility manger, practically forbade us to leave the building with him! We were obedient because we feared she would tattle to Dr. Schroff and we are already on thin ice after the 'no socks' incident. Although Stephanie and I were chagrined, we know that they are just looking out for us.

Monday, December 27, 2010

They're in there

Today's big news: TEST DOSE. Cash received his first shot of stem cells today without incident. We will wait 24 hours to ensure that there is no negative reaction and then we are cleared for takeoff.

The missing luggage has never turned up. Apparently a small Chinese child is now wearing Cash's clothes, eating his foods, playing with his toys, and using his growth hormone to get as big as Yao Ming.

Josh and I did yoga today at the clinic. Cash watched us very seriously.

Yesterday we went to a place called Humayun's Tomb, built in the 1550's. I was mobbed by small Indian schoolboys in uniform who were delighted by me taking a picture of them (though they had fancier cameras/phones than I did). At one point, 20 little boys clambered around me yammering in Hindi, and then later they clustered around Cash and took pictures of him. It was terrific.

Saturday, December 25, 2010

God Bless Us Every One

Christmas in India. We wake up and Cash starts his antibiotic IV drip. While we wait we Skype family members back home. For them it is still Christmas Eve.

Next we go downstairs to open presents by the Christmas tree in the lobby. We want to keep some semblance of tradition. Cash opens some presents we got the day before in the street bodegas. He gets a drum, a little tuk-tuk (a yellow and green auto rickshaw prevalent on the streets of Delhi), and a pink elephant from China which promises a 'happy good time'. In actuality, the elephant delivers a noisy, annoying time and will likely be donated to the children of India soon.

Cash looks a little pitiful with one of his hands taped to a paddle for his IV injection. We call it the flipper. As usual, he is more interested in the wrapping paper than the gifts but does play with them for a while.

After this we take a taxi to the City Walk mall. Dr. Schroff insisted that Cash be indoors due to the cold and terrible air quality so the mall seemed the best place to get some exercise. It was just like any Western mall which I found disappointing but Stephanie found somewhat comforting. We did have a great Christmas lunch buffet there that put us in better spirits. However, while we ate the density of the mall increased by a factor of a least 10- there are a LOT of people in Delhi-so we were shoulder-to-shoulder getting out.

On the return trip to the clinic we took a tuk-tuk which was quite an adventure. The driver played chicken with cars and even buses in what is the normal driving procedure here.

We had Christmas dinner with the staff and other patients at the clinic that evening. The staff has been wonderfully attentive to us and tried to make the experience special for us all. The other patients are from around the world and suffer from a variety of different issues. It was a poignant end to our day to see everyone so thankful just to be alive and present regardless of the circumstances.


Friday, December 24, 2010

P-neumonia

Cash had PT this morning - physio, they call it. Krista and Lisa: you'll be pleased to know that they seem competent and kind. They don't have all your equipment, but they seem to know their stuff. Cash is still hiding all that he can do from Donish, but that will change. You know he can be sneaky :-)

So last night, as we are going to bed, we get a call from Dr. Shazhada who says that Cash's chest xray shows that he has pneumonia. Everyone freaks out. We knew Cash was sick - he had slept ALL day - but Josh and I were calmer than the staff (since we've seen this a million times), but we were dismayed. Especially because they told us we might have to wait a week to start the stem cells. Dr. Shazhada started Cash on intravenous antibiotics at 10pm last night - by this morning, he was already much better. Typical Cash. He's still a little tired, and he looks ridiculous because he is wearing a T-shirt of Josh's which keeps falling off one shoulder in a very 1980's Flashdance kind of way, but his appetite is back and he is starting to cause trouble. And in other good news, Dr. Shroff says that we might be able to start the stem cells in a day or two after all.

A word about Dr. Geeta Shroff - she has been lovely to us and she is a very get-it-done person. But she is determined that Cash is not wearing enough clothes! Both Josh and I have been fussed at for Cash having bare feet. She told us we should all be wearing long sleeves and Cash should be wearing two layers. Nevermind that Josh and I are sweating! But believe me, you won't see Cash without socks at any time from now on.

From Cash's feet to his head: his brain scan apparently showed some "serious deficiencies". Dr. Shroff acted like that may be an interesting challenge. We do keep meeting other patients who report having made progress: a little girl from Australia who has regained eyesight, an autistic boy of about 10 who has started to talk a little, a little boy with cerebral palsy who is walking better. There are also a couple adults here with Lyme's. It makes us feel very hopeful and very eager to get started!

And btw, we still don't have Cash's luggage. Hence him wearing Josh's T-shirt.

Wow, it's almost Christmas. I'm not missing a thing - I'm still so glad to be here.

Thursday, December 23, 2010

Off to bed

No action today really. We've started Cash on antibiotics and he slept most of the day. I'm hoping he's feeling better tomorrow. We're staying relaxed and just chilling out, but there's not much to do except watch Bollywood musicals on TV.

The pollution is remarkably bad. I get a headache after 15 minutes outside, which is disappointing because I WANT to be outside. The weather is warm and pleasant, the people-watching is great, there are sights to see. But I think we probably need to keep Cash inside as much as we can because of his asthma.

The clinic has a cute little Christmas tree in the lobby. Otherwise, I might have forgotten Christmas is around the corner.

Cash in China

During our 10 hour layover in China Cash had an 'accident' that left him in need of clean pants. Although we did not intend to go native, once he had the pants on it was impossible not to add the top. Even the Chinese were smitten with our little Kung Fu panda.

The Indian head waggle

We spent all morning in the hospital getting tests - a brain scan, a chest x-ray, blood tests. It was interesting, but the best part was the guy standing at the front door, who was wearing some kind of traditional costume including a turban and shoes with turned up toes. I've gotten used to the saris and turbans in general but this was a step up.

Last night we saw a pediatrician because of Cash's cold. It was frustrating. The doctor didn't really listen to me and instead he lectured me. He did say that Cash's lungs sounded fine, and he thought it was a virus, not pneumonia. I already knew that. Actually, I'm afraid Cash is going to be sick here a lot, he is always prone to catching every little virus, and now we are in a world full of new ones. So Josh and I just wish they would get on with treatment, but we don't want to be pushy. Right now, we are chilling in our room, resting and finishing lunch.

I should add that Josh and I are both sick too. Sore throats and runny noses. I have a bit of laryngitis.

Lenor asked about our accommodations and our street. The clinic is just a simple 4 story building, with a lobby and hospital-type rooms. We are apparently in a nice area of town, but I had to be told that. It looks sort of ramshackle. Nice-ish buildings next to crumbling ones. The buildings are about 3-4 stories, and there are trees, and the traffic is crazy. I know, everyone always says that, but REALLY. Lane lines are apparently only suggestions, everyone honks all the time, the streets are a mishmash of cars, bicycles, motorcyles, rickshaws, pedestrians. It is fabulous and nutty. On our drive over to the hospital, I saw a boar hanging out by the side of the road, and Josh saw a cow. I want to see a cow. We also saw fancy buildings and a tent city. In general, though, I would say it is not as wierd as everyone prepared me for. Frankly, it is just a parade of people and sights, it mostly looks like a run-down type city.

So far we are eating our meals at the clinic. Our room comes with three meals a day. We think we may move to a hotel soon (to get a little more room), and then I'm hoping to try different food. The food here is fine, just a bit boring.

We have seen the famous Indian head waggle. We're thinking of practicing it ourselves. 

Tuesday, December 21, 2010

We're here

After nearly 24 hours on planes, and an additional 24 hours in airports, we are now in India. It is sunny and warm and stem cells are RIGHT DOWNSTAIRS.

We were supposed to travel through Heathrow, but it was closed (Who has ever heard of Heathrow closing? Sheesh.). We ended up buying one way tickets through China - we flew China Southern Airlines out of LA, to Guangzhou (Canton), to Delhi. We were just about the only non-Asians on the plane, but I had the best tofu ever, and we watched the Twilight movie three times. The flight was FIFTEEN HOURS long.

We were in Guangzhou for 10 hours, and it was interesting, though not particularly cultural. Josh noted that it pretty much looked like LA, but so did Delhi's airport. The most notable thing in Guangzhou was that Cash had a blowout diaper and we ended up buying him a full-out little silk Chinese outfit, complete with a dragon and frogging. He looked very amusing.

Also, Josh bought wasabi peanuts in China that we are now all addicted to. Even Cash, though they are HOT.

We arrived in Delhi at 9:30pm after a six hour flight from China. Three of our four bags made it here - only Cash's did not. The clinic is small and makes you a little nervous at first - it is not like American doctors' offices. Our room is little, with the shower over the toilet, but it has HBO. Cash and Josh shared the hospital bed last night while I slept on a comfortable pallet.

We've met a fellow patient who is a quadriplegic who after 3 treatments now has greater movement in his arms. That was very reassuring to hear!

Cash has already met with his physical therapist (Donish) and is scheduled for his first test dose of stem cells later today. Also more tests today and tomorrow. He still has his cold and a bleedy  nose, but he's being pretty chill. As long as he has Frog and Blue Music, he is fine. Luckily, Frog was in our carry-on - he was born in China so he seemed happy to be back.

We met Dr.Geeta just a bit ago. Very nice, and she told me she can tell Cash is smart, we just have to work on the physical stuff!! Of course, that is what I believe :-) She ordered tests and PT, OT, etc. She and everyone are being very kind.

And so we begin!

Saturday, December 18, 2010

Departure Day countdown

It's 10:30pm, and we are all packed, minus the last minute items. Cash has just fallen asleep, and I am chilling out for a last few moments in front of American TV.

Cash woke up much better this morning - I was a bad citizen of the world and gave him antibiotics. But of course they worked. He's still got a runny nose, but he's chipper and alert.

Pam, Maidy, and David came to pray with us this morning. It was lovely and moving. They are exceptionally kind.

I also visited my little Ariana today - she broke her neck, her ankle, and a rib snowboarding on Thursday - it was hard to see her so hurt. I was Ariana's nanny years ago, and I love her dearly, and I love the person she has become. A little broken today, but overall fabulous :-)

Two adorable Chilean girls are staying at my house while we are in India. Gianina has just finished cooking dinner and has promised to take care of Fish while we are gone. Maria should be home any minute.

This is it. We leave tomorrow. Wow.

Friday, December 17, 2010

Not long now

Just a scosh of freaking out - Cash is sick, Josh is arguing with me, our hot water heater is not working...things are a little hectic. But it will all be fine, it will all be fine.

The only thing I really care about is Cash getting better.I hate to make him travel when he is this sick.

Otherwise, we're moving along - I started packing last night. My working theory is to pack for a week, not a month, since there will certainly be stores and laundry facilities there. But it's hard to know what we might want! I'm going light on clothes, and heavy on toys and books.

Everyone has been super kind the last few days - lots of well wishes. I appreciate all the love and all the hope!

Thursday, December 16, 2010

Elephants

The other night I dreamed about small, cat-sized elephants. They were adorable (close your eyes and imagine a cat-sized elephant - oooh, the delight!). I woke up, and wondered why I was dreaming about elephants - but of course, India!

The tiny elephants have stayed on my mind. I want one. They should breed some.

Carnival

Georgina's 6th grade class threw a carnival for Cash today at the Yellow Brick. It was very sweet and fun. I cried a lot - something about all the kids, and my funny little kid, and all the kindness. But it was lovely and I so appreciate Georgina's friendship and efforts on behalf of our adventure. I met Georgina when we were both nannies many years ago - she is a fabulous person.

Donations keep coming in. It is awe-inspiring.

Cash is still sick, though the doctor said it is just a cold for now. But his little face is sad and he is droopy. He does have a nice new haircut, thanks to his dad.

Only 2 more days.

Wednesday, December 15, 2010

Baby it's cold

Yup, he's sick. But it's only a cold (so far), and I managed to get antibiotics out of his doctor in case it gets worse. I'm just really hoping he's feeling better by Sunday. Being sick on an airplane is no fun.

Things left to do: practice Skype, find someone to feed Fish and water plants while we are gone, PACK, gather all travel docs, buy some paperbacks, make a few calls before I turn off the phone, attend the Carnival for Cash at the Yellow Brick tomorrow, get prescriptions, try to stay calm....

Tuesday, December 14, 2010

Sick and tired

I think Cash is sick. Bad timing. I really hope he is feeling better before we embark on 2 solid days of international travel. Eesh.

Monday, December 13, 2010

Little teeth and big money

Cash had a dentist appointment this morning - they had to fill a cavity. No big deal, except that they give kids like Cash a sedative before doing dental work, so there's always a little risk. He hates having anyone mess with his mouth, but he came through the appointment just fine. He's a tough kid.

We leave in less than a week! Freaky. I need to starting thinking about packing.

And today I transferred the money to the clinic in India. Except for buying a house, I don't think I've ever messed with that much money. It feels good to know we'll be there soon.

Wednesday, December 8, 2010

Corduroy pillows are making head lines

Cash likes Corduroy. He has two books about Corduroy and his very own stuffed version. When I read Corduroy's Day (a counting book) to him, he always wants his Corduroy to come sit with us. And last night, he was looking at a different picture book and it had a picture of a teddy bear - he pointed to the picture and then he pointed to Corduroy. It was very cute.

On the other hand, I detest his Leap Frog toy that only sings about the potty.

Tuesday, December 7, 2010

Lately

Lately I've been feeling a little out of sorts.

It's taken so much .... effort to make this trip to India happen. It took an insane amount of hope as well as a lot of energy and follow-through. First, we had to open ourselves up to the possibility of change and let ourselves believe things could be different, which is actually a remarkably challenging thing to do. Then, we had to make it happen - we had to attend to all the details, including throwing a fundraiser and auction, doing PR, setting up bank accounts, buying airline tickets, arranging for housing, getting shots, getting travel insurance, etc etc etc.

I think my out-of-sorts-ness has to do with managing my expectations now that a lot of the details have been settled. While we are still here at home, I am stuck between wild hope and sneaking fear. I want so badly for the stem cells to help Cash. I want to have reasonable expectations, but I can't help but hope sometimes for an amazing outcome. So I try to squash some of my hope, and sometimes I end up a little afraid - afraid of nothing happening, afraid of causing Cash pain. Once we get on the plane, I think that will all go away - then we can focus on doing the treatment and we can respond to what is actually happening instead of worrying what might happen.

I can't wait to get on the plane December 19th.

Friday, December 3, 2010

The day he was born

Cash was born on a Saturday at 12:10pm.

After a quiet Friday night at Aspen Valley Hospital, I woke up, had a nice breakfast, and went from calm and happy at 7:30am to screaming pain by 8:30am. I had told Josh I wanted to try have a natural delivery - he leaned in after I asked for the epidural and said sweetly "You said to remind you that you want to do this naturally."

Ha ha.

Four hours (and the epidural) later there was Cash: 6 pounds 2 oz, 17 inches long, pink and squeaky. Cash had some fluid in his lungs, so we sent him to the incubator and I had a grilled cheese sandwich and a nap.

Cash's birthday was a happy day. It wasn't until later that it became clear something was wrong. For the next 3 weeks we were in and out of hospitals as Cash wouldn't eat and got sicker and sicker. It was when he was nearly 4 weeks old that we learned he had a chromosomal abnormality.

I never wore the dress I was wearing that day again.

Thursday, December 2, 2010

Tuesday, November 30, 2010

Flights are booked

Okay! We leave December 19th for India. We really are going.

Josh and I are taking Cash, and we will both be with him for the first week. I'll stay with him until January 22nd, after which Aunt Dianne and Josh will be with him until AD brings him home on February 24th. Mom and Valerie are also coming while I am there. Somehow two months is a very short period of time in the context of your whole life and yet a long time when you are living it. It is amazing to me that we will be back here within three months, but all that will happen between now and then.

I am going to MISS that kid when I'm back in Aspen and he's still in India.Yikes.

We really are going, we really are.....

Tuesday, November 23, 2010

A passage to India

Well, this week's big story is the lack of frequent flyer seats available to Delhi in December. We have FF miles (courtesy of some very nice people who spend a lot of time on airplanes), but there are no seats on which to use them. Apparently everyone from India who is living in the United States goes home for the holidays.

So we're looking and looking and looking. The airlines keep telling us to call back in a few days because "maybe they will release more seats". Uh-huh. At this point, I'm thinking of digging my way through the Earth's center to reach India.

Of course there is a special irony in that everyone I talk to on the phone at United is clearly in India themselves.

Wednesday, November 17, 2010

Ahora mismo

It's weird, but it's hard sometimes to accept love.

I am a person who loves a lot, and who loves a lot of people. Most of the time, I think I am a person who not only readily gives love, but readily accepts it.

But I've found this last month - as so many people have been so generous with their time, money, and love -that it's challenging to let people help me. Rather, I find that I want to give back to them immediately, that I fear I'm not worthy, that I am afraid of disappointing them. I feel like I need to be a better person to live up to all this kindness being shown to us.

At the same time, I know it's not about me - it's about Cash. And I know people aren't expecting miracles, and they aren't doing this expecting something back. And so I will practice accepting all this love, and then sending it back out...

This whole journey will change me, I think.

Tuesday, November 16, 2010

Sand castle

Cash and I building sand castles last January. Well, me building, Cash smooshing.

Some big thanks

SO many people have been so generous with their time and support and money, it amazes me - more on that later. I want to thank the people who made the Change for Cash event happen at all:

To the Aspen Elks Lodge, for hosting and supporting our endeavors; to Paul and Katie Viola for our beautiful logo; to European Caterers for the awesome food (as always); to Aspen Epicure for the yummy desserts; to Mountain Flowers for the decor; to Shelley Popish, for her work on the auction and raffle; to Jerry MacEachen for all his help on site; to Shanti and John O'Donovan for their accounting work; to Jamie Kravitz for work done and yet to come; to Heather and David Gibson for their bid sheet design and witticisms; to Meredith Carroll, Mike Conniffe, KSNO, and the Aspen Times for telling our story; to Traudl Lyons for her unflagging energy and work on our behalf; and, to EVERYONE who came and celebrated with us. I feel so much gratitude I could burst!

Sunday, November 14, 2010

A success

What a success!! The celebration and fundraising event was incredible - I am totally overwhelmed by the turnout and the generosity everyone showed. I keep starting to cry.

First and foremost, it was a great party - lots of people and a fun atmosphere. Frankly, there were a zillion people I would have liked to talk to for a very long time. The food was fabulous, everyone bid up the auction items, and Cash ran around in his walker like a maniac (until fell asleep on Gramma's shoulder).

Tomorrow I have a lot of people to thank, but tonight I'll just say I feel grateful to the whole world somehow. I feel so lucky that so many people love us...

Event today!

Our Change for Cash fundraising event is today at the Aspen Elks Lodge from 1:00 to 4:00pm. Free food, silent auction, vacation raffle - come join us!

Friday, November 12, 2010

Heart is full

Thank you to Angel Gray, Beth Wille, Lisa Pranno, Kirsten and Brian Klein, Angela Swint, Monica Davis, and Donna and Bruce Phelps, John and Birgit Suitor, Paula Zurcher, Jerrod Iverson, Emily Sprouse Leslie, Anonymous, Ariane Zurcher, Amy Presby, Jamie and Jim Kravitz, Keri and Seth Miles, Tomiko and Ken Lewark, Georgina and Alan Levey, and Gia Quillen. My heart is full, you guys.

Thursday, November 11, 2010

Friends and school

Cash did something the other night I've rarely seen him do - he got upset when a friend left.

Our neighbor Shelley stopped by on Tuesday and brought her daughter Hannah. Cash and Hannah played together and Cash laughed himself silly. When Hannah said goodbye, Cash got distressed and cried. Previously, I've only ever really seen him get upset about me leaving. It was sad to see, but I think a good thing developmentally.

We have a parent-teacher conference today - I love Cash's teachers at The Cottage and his para Elizabeth. They are fabulously kind and expect so much of him. I also love the other kids in his class - Tanner, Ava, Story, Zane, Josue, Alan...they are the cutest and they interact so sweetly with Cash.

Wednesday, November 10, 2010

Party time

Our fundraising event is only four days away! Please come to the Aspen Elks Lodge on Sunday, November 14th from 1:00 to 4:00pm for free food, a silent auction, and a chance to celebrate with us.

Josh and Cash in 2007

Tuesday, November 9, 2010

Thank you thank you thank you

Thank you to Jim and Mary Ann Becker, Russell Hoffberger, Dorothy Frommer, Mark and Rae Lampe, Krista and Tom Fox, Kris and Heather Kaplinsky, Mimi Teschner, Judy Kravitz, Nancy Homan, Tara Sheahan, Paul and Sabine Fowler, and Lisa Chiles!

Fabulous column by Meredith Carroll

http://www.aspentimes.com/article/20101109/COLUMN/101109856/1021&parentprofile=1061

My lovely friend Meredith wrote about us in today's Aspen Times. You know Cash and I are secretly fame whores, so we're enjoying our moment :-)

Monday, November 8, 2010

Monday news

Cash has four news signs this month: Mommy, Daddy, hurts, and bunny. Plus maybe "I don't know", which is very cute - he stretches his arms out with his palms up. I have no idea where he learned that one!

Cash came in and and woke me at 6:30am this morning. I asked him if he wanted to snuggle - he nodded yes and flopped down next to me. I love his fuzzy little head.

We are all getting stressed about the fundraising event on Sunday - too much to do! We've pulled this together in about 3 weeks, which is amazing. I'm doing some press interviews this week (I'll post a link tomorrow to an article in the Aspen Times) to get the word out. I have to say that talking about Cash's health issues and developmental delays is emotional for me. Usually, on a daily basis I deal with Cash as he is and focus on all the things he CAN do. This whole event and trip to India means explaining to the world what his limitations are and I find that very trying psychologically. I don't like to have anyone feel sorry for us. But at the same time, I understand that I need to help others understand why we think stem cells could really make a difference in Cash's quality of life, and that means explaining where he is now and what we are hoping for. So I soldier on!

Friday, November 5, 2010

A quiet little guy

A short description of Cash often makes him sound...like a lump. Like, "he's five, and he doesn't talk, and he doesn't walk much without assistance". But in reality, he's an engaged and engaging person. He sort of talks all the time - lots of different sounds, and lots of sign language, and lots of receptive language. He makes eye contact, he laughs, he asks for things. He can be whiny and demanding, he can be naughty, he can be playful. He likes people, and he is attached to his family. In unfamiliar situations, he often withdraws (though he rarely acts out), but he likes to be near his peeps and he seeks interaction with us. It's hard to explain to someone who sees him only rarely that he has a sense of humor and that he learns quickly when motivated. If you take the time to listen to him, Cash actually says a lot.

Watched a tiny bit of Outsourced last night - excited about India!

Thursday, November 4, 2010

Thanks

Thank you to Brad Blunt, Dorothy Frommer, Gerhard Mayritsch, Kelly Cleaver, Anne Spaulding, Karon Moore, Shereen Sarick, Debra Mayer, and Carleen Joseph for their recent donations!

Risk

Someone reminded me the other day that no change is not the worst outcome possible from stem cell treatments - that there could be negative side effects or even permanent harm.

Dr. Schroff reports no negative outcomes in her years of doing this, but of course it could happen to us. I know this. I don't like to think about it, but I do know it. And I admit that I am (semi-) prepared for no change, but I'm not prepared for Cash to be hurt in a lasting way, partly because we've assessed the risks, and permanent harm seems unlikely. If I didn't believe that Cash will be okay, I couldn't do this.

I believe that we've been given a chance to expand his possibilities, though that chance comes with a certain amount of risk, and we've got to take it.

Wednesday, November 3, 2010

Tax deductible donations!

A fundraising campaign in Cash’s honor has been established with NTAF. NTAF is a nonprofit that has been assisting the transplant community with fundraising for more than 28 years. All contributions are tax-deductible and are administered by NTAF for transplant-related expenses only. It was Amanda Boxtel who urged us to contact NTAF, as she too has been working with them since 2007.
Won’t you please consider making and end-of-year tax-deductible donation today?

Make checks payable to:    NTAF Midwest/West Stem Cell Transplant Fund
Memo section:                      In honor of Cash Burnaman
Please mail to:                      NTAF
                                             
150 N. Radnor Chester Road
, Suite F-120
                                               Radnor, PA 19087

For credit card donations, please call 800-642-8399 or visit http://www.ntafund.org/ and enter Cash Burnaman in the Find a Patient section of the homepage.

Excited/Overwhelmed

I'm vacillating these days between being excited and overwhelmed.

Excited because this is an adventure and I am full of hope. Excited because Cash is doing so much right now and I think stem cells will help him to do more. Excited because we are participating in the cutting edge of scientific research and we will help grow the knowledge base. Excited because of the outpouring of love and support we're seeing.

Overwhelmed because travelling to India is a big undertaking. Overwhelmed because throwing a fundraising event is a big undertaking. Overwhelmed because everyone has an opinion. Overwhelmed because this is taking so much money and energy.

Excited/overwhelmed is not a bad place to be in life. It's just a little exhausting/exhilarating.

Monday, November 1, 2010

Mommy

Cash said "Mommy" on Friday :-) The sign is an open hand and thumb to your chin. He did it clearly at school on Friday and did it some more over the weekend, though his thumb often ends up in his mouth. I am charmed of course. I think he likes me.

More thanks

Our latest angels are the Aspen Volunteer Fire Department, Joan Gordon, Alan Fletcher and Ron Schiller, Chuck and Traudl Lyons, Alex and Ann Kaschock, and Katie and Mahlon Neal. You guys rock! You lift my spirits and move me to tears with your generosity.

Friday, October 29, 2010

Hope

The phone call with the woman who just got back from India with her son really gives me hope. I am still feeling buoyed by it two days later. The fact that she sees changes, and she reported changes in another kid with autism who was there at the same time, is remarkable to me, and shows me that we are doing the right thing by taking this chance. Josh and I have been focused on potential physical changes - improving his low muscle tone and the changes that might cascade from that - but if we see changes in his cognition too, that would just be whipped cream on top.

And at this point, I have to say that even if we don't see any changes at all, I still think we are doing the right thing. I see lots of reasons to hope, and I think our decision to pursue stem cell therapy is a rational and reasonable one. Granted, a rational and reasonable adventure!

Wednesday, October 27, 2010

Zowie

Josh spoke today to a woman who just returned from taking her autistic son to India - she reported CHANGES IN COGNITION!!

Donate

A reminder: we need money to take Cash to India! Please donate:https://www.wepay.com/public/view/151686

Football

Here is a picture of Cash and Josh playing football when Cash was three months old. You'll notice that Cash IS the football.

Tuesday, October 26, 2010

It's now

I think we are taking Cash to India for stem cell treatment at the right time - he's working so hard on walking these days and it just feels like a little help will make a big difference. His steps are still hesitant and he usually falls into your arms at the end of about 5-9 steps, but you can see that he is starting to believe that this is something he wants to do. And he's standing by himself for a long time now, and signing at the same time. I am still amazed to see his little body on his own two feet standing all by himself in the world.

Cash's eye contact also seems to be improving lately, and he is into the letter O. Have I mentioned that he has a very individual, but very strong, sense of humor? He generally thinks peekaboo is funny, and being chased, and people cleaning or doing repetitive movements (which can be a little weird when he starts chortling at the busboys at restaurants). And he is ticklish, which I enjoy!

I just think he is working on so much now, and stem cells are going to be an extra push...

Friday, October 22, 2010

Lots of good news

First of all, a big thanks to David, Hank at the post office, Shauna, Aunt Sue, Sam and his family, and Grace for their gifts in support of Cash's trip! I love you all!

Second, we met with Leah yesterday and I am even more convinced that stem cells are going to help Cash. Her descriptions of her personal changes and the changes she saw in those around her are remarkable.

Third, I visited my friend Ariane's blog today and saw potentially great news. Ariane's daughter is autistic and they have done two rounds of stem cell therapy in Panama with her - and now they seem to have evidence that Emma's brain scans have improved! Very exciting for Emma, and maybe another reason for us to be hopeful.

Fourth, Shelley Popish has agreed to oversee the silent auction at our event on November 14th. I am incredibly grateful and feel like a huge weight has been lifted off me. Woo Shelley!

It's really kind of a nice Friday, huh?

Thursday, October 21, 2010

Busy

We're so busy right now - both trying to fundraise/plan the November 14th event and trying to plan the actual trip.

We had lunch with Leah Potts (who has been to Dr. Schroff's clinic in India three times) today and talking to her made me that much more sure we're doing the right thing. I think we'll see positive progress in India and that makes me very excited and happy. The whole stem cell process is amazing.

We're taking donations for the silent auction now - woo woo!

Cash was also very cute at lunch - he's been particularly charming lately. And I saw about 8 independent steps this afternoon!

Wednesday, October 20, 2010

Autism

We spoke with Dr. Schroff in India this morning - the most interesting thing she said, I think, was that she is interested in working with Cash's autism as well as his physical issues....hmm! I hadn't really allowed myself to hope for improvements in that area!

Logo from Paul and Katie!

Tuesday, October 19, 2010

Another way

Here's another way to donate:

https://www.wepay.com/donate/add/151686

Money money money

Here's the thing - I am totally excited about the trip to India and am totally hopeful about Cash's chances for improvement. But I hate the fundraising!! We have to raise $50,000-100,000, and so we MUST put ourselves out there and ask for money. So here goes:

If you are interested in supporting our efforts to help Cash reach his full potential by receiving stem cell treatment, please make a donation to the Change for Cash fund at US Bank (phone number 970-925-3959) or by writing a check to Cash Burnaman, Josh Burnaman, or Stephanie Krolick with "Change for Cash" in the memo line. All funds will go to support Cash's therapy.

Thank you, thank you, thank you.

Monday, October 18, 2010

Weekend

Cash and I had a very nice weekend - cleaning out closets and watching the Steelers win (of course Cash is a football fan). He did have a tumble down the stairs though - not a bad one, but afterwards, he tried to do the sign for "hurts" (pointer fingers touching) - first time I've seen that sign! It wasn't done quite right, but I liked the effort. He's also working on the sign for "bunny" right now - Little Bunny Foo Foo being in Cash's Weekly Top 40.

Cash is doing two other new things within the last few weeks that I think are great. When you ask for a kiss, he leans in and sort of bonks you with his head. And, he's been giving Froggy and Corduroy snacks and drinks, which he thinks is very funny. Both good steps forward in terms of engagement!

Friday, October 15, 2010

Cash's first independent steps

video

First gift

We just got our first gift in support of the trip to India! It is from a coworker of mine, and I cried when I got it. I am so touched by his and his wife's outstanding generosity and thoughtfulness - what an amazing start to this journey!

Thursday, October 14, 2010

Our little guy and India

Our son Cash was born July 30, 2005 with an un-named chromosomal rearrangement on his X chromosome. He is now 5, and working to learn to walk and communicate. He does not talk, but he uses sign language, and we saw his first real independent steps just a few weeks ago. He's a charming little person - sweet and lovable.

Cash goes to preschool and he takes physical, occupational, and speech therapy. We love Cash as he is, but we want him to have every opportunity to reach his potential.

And to that end, Josh and I have decided to take Cash to India for stem cell treatment this winter!

I got excited about this idea in August after speaking with Amanda Boxtel. Amanda has visited Dr. Geeta Schroff in New Delhi numerous times over the last few years. Since receiving stem cells, Amanda has increased sensation and bladder control. We believe stem cell therapy will help Cash because he has hypotonia (low muscle tone). Because Dr. Schroff’s experience has shown that stem cells have helped improve the condition of paralyzed muscles, we believe that they will help improve Cash’s muscle tone. Though Cash has other issues such as asthma and developmental delays which may benefit from stem cell treatment, we are focused on a reduction of the hypotonia as a reasonable treatment outcome.

Treatment consists of injections of stem cells, along with intense physical therapy, all under the supervision of a doctor who has been practicing this therapy for 10 years without negative side effects. Cash will need to be in India for two months for the initial treatment with additional future treatments planned. The total cost is likely to exceed $100,000. More on that later -

Our goal is to improve Cash’s quality of life. We are not looking for a miracle cure – Cash is who he is – but we would like to make his life better. When Cash’s muscle tone improves, we expect improvements in his ability to walk, potty-train, and perhaps communicate (since core stability is crucial to both sign language and speaking).

Cash is a fabulous person – and he deserves a chance to reach his full potential. India, here we come!