Letter from Stella's Mum 12 March

SATURDAY, 12 MARCH 2011

Hi Stella Standing Tall Community:

Sorry I haven't been in touch sooner- the wireless internet here at Ronald McDonald house isn't working and the computer room is only open during the middle of the day when we are usually out!

I just wanted to give an update for Stella's Facebook page.

The accommodation at the Ronald McDonald House NYC is very impressive.  The staff and the volunteers do their best to make the families feel at home and that all their needs are met.  There is a large dining area with 4 communal kitchens with top of the line appliances, not that I've tried cooking yet.  The bottom floor of the building has a playroom with large library, arts and crafts area, Ping-Pong table and computer room.  Stella has already tried out the playroom and Sophie, who arrived a few days ago, has made a volcano.  There always seem to be bagels and pastries available in the morning, probably donated by a local bakery.  And so far, there have been tasty dinners at night, also sponsored by various organizations.  One night, there was a Mardi Gras theme, so Stella got dressed up in a hat and feather boa to have her photo taken- however, her face looked like the day after mardi gras- she was not amused by all the fuss.  There was tasty BBQ food and dessert on offer.  The second night we were here, it was make your own pizza and ice cream night.  The day Sophie arrived, there was a nice dinner and the kids got to decorate cupcakes. The meals are served by volunteers from all walks of life-  they come here once a week to help out- some are grandparents, some are 20-something yuppies, some are college students, one was a model, etc.  Throughout the day, there are various activities for the kids- usually geared more towards the older kids- yoga, photography, science, etc.  Occasionally, therapists come by with dogs that are trained on how to be gentle with kids- these dogs are called "angels on leashes". 

Most the kids here at Ronald McDonald house are suffering from cancer, brain tumors and other rare diseases.  Some of them come here multiple times a year for treatment.  At the office where Stella saw her hematologist (blood doctor), kids were receiving outpatient treatment for cancer.  A volunteer told me that those kids have to come there once a week for up to one and a half years.  Each treatment lasts 6 hours and consists of them being attached to an IV to get their medication.  Luckily, the office had a lovely playroom with a volunteer who did arts and crafts with them, there were plenty of snacks on offer and DVD's for them to watch- 6 hours is a long time in the eyes of a child!

Once again, I am amazed at the generosity of everyone.  Stella received a free toddler laptop when she arrived.  At one of her blood test appointments, she received a little cushion decorated by children from a local New York school.  The nurses at the hospital gave her a bottle of bubbles and a stuffed anima.  A volunteer (lovely young lady) gave us a tour of the pediatric ICU where Stella will be staying.  These volunteers are specially trained people called "child life specialists".  They play with the kids on the ward to distract them from the downsides of being in hospital. They even have a hotline that I can call to ask any questions I may have about Stella's stay at the hospital.

As for Stella, she is struggling with jet lag and increased seizures.  Now that I am sharing a bedroom with her, I realize how many seizures she has during the night when we are sleeping. Last night, I counted 6 strong ones, in additional to the handful she has had during daylight hours.  As a result, she cannot stand unaided today and has injured herself a few times in our bedroom, drawing blood. Not enough to need stitches, but bad enough that we cannot take our eyes off of her.  I am sure the neurosurgeon will be wondering what happened to her when we see him for a consult next Tuesday. She looks like she has been in a bar fight!

And that has been our stay in New York City so far.  One week now until surgery.

I've been getting updates on the fundraisers and it all sounds very exciting- I wish we could be there to see it all happen. 

Well, I better save Marcel from the 2 girls, so I'll say goodbye for now. I'll try to come back soon and give another update.

Best wishes and thanks to everyone who is supporting Stella!

xx Alison