How to donate
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.)
Thursday, December 30, 2010
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
Josh is going to the airport this afternoon to look for our lost luggage. That should be an adventure.
Tuesday, December 28, 2010
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.
Monday, December 27, 2010
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
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
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
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.
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 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
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
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
The tiny elephants have stayed on my mind. I want one. They should breed some.
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
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
Monday, December 13, 2010
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
On the other hand, I detest his Leap Frog toy that only sings about the potty.
Tuesday, December 7, 2010
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
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."
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.