News from Marcel, just before third surgery:

Sorry - bit late in posting this one.  SST xx

Dear SST Team,

Thank you for the wonderful package you put together for us. We are indeed night owls sometimes.

I love the wristbands, toys, map, pj's, puppets and all the other stuff you've got in there, certainly refreshes our entertainment options for stellas bedside!

Stella is getting fed up now with her old toys, she also loved the little fairy-star wand. You put real thought into it, thank you.

Stella was walking around the floor the day after she had brain surgery, some determination, eh?

All the nurses are fawning over her.

I still can't wrap my head around all you have accomplished for Stella, you've got some serious skills there.

I wish I was there to personally thank you, but that will have to wait.

Today is the last operation, hopefully everything will go according to plan like the last two times, it feels like we are rolling the dice each time.

Hope you and your families are well.

Marcel

Hi Lisa, 

How is Imogen? Lynn said that you had to dash to her school the other day as something had happened...

And finally, below us a link to a bio about Stella's neurosurgeon, Dr. Howard Weiner.  I thought we could paste it into the Facebook page.  He's an amazing surgeon and one of the most compassionate doctors that I have ever met.  More importantly, he is doing research on Tuberous Sclerosis, trying to figure out the best way that surgery can help patients and to understand exactly how TSC affects the brain.

 http://www.med.nyu.edu/neurosurgery/pediatric/surgical_specialists/bio.html

X Alison

Ps.  Stella's care package from Hong Kong arrived today.  Thank you so much for the beautiful pajamas.  They have fun and lovely embroidery.  They will be great for hong kong's hot summers.

News from Alison after second surgery ...

To the Stella Standing Tall community:

Just a quick note to let you know that Stella is out of surgery.  It went very smoothly.  Her neurosurgeon said that he could clearly see the tuber- it didn't look like normal, grey brain matter and it had a firm texture.  He removed a large olive-sized area.  Over time, this empty area will fill in with regular brain tissue.

So, she is now sleeping, pumped full of morphine.  She will have another MRI tomorrow and the last surgery on Wednesday.

The adventure continues!

X Alison

Note from Alison before Stella's Monday surgery:

27 March 2011 - from New York

Hi everyone,

I thought it was time for another update on Stella's surgical adventure.

It is now Sunday morning here in New York City, the day before Stella's second surgery.  It is a beautiful, sunny day, but very cold.  Here are a few photos of the view from Stella's hospital cot.  The river is called the East River and cuts through New York City.

Stella had a long, strong seizure last night that left her father a bit stressed out and Stella exhausted.   It took a while for the staff to give her emergency medication to stop the seizure because they weren't convinced that she was having a seizure. Ironically, we had left our emergency medication back at the flat because we didn't think we would need it here at the hospital, but we could have used it last night (or maybe the nurses would have called security on us if we tried to give our own meds!).  Stella got the medication after about 20 minutes, thanks to some yelling from Marcel ;). It appears that the big tuber on the front of her brain was the culprit behind this scary seizure.

At least now the epilepsy team will have recorded all variations of Stella's seizures which will help her treatment.

Her second surgery is at 7:30am on Monday morning.  We are stressed out about this one because the surgeon will be cutting into her brain.  Fingers crossed that there will be no complications.

A little 18 month old girl and her parents came by the hospital last Friday- she was the previous patient in Stella's cot and had undergone a similar procedure- she has something called cortical dysplasia- spots in her brain did not form properly in utero.  However, her seizures abruptly stopped after the surgeon placed the strips on her brain!  So she had no further surgery.  One week after discharge, she still has no seizures! I hope for her and her parents' sake she stays seizure free.

Her mom showed me the cuts and stitches on her daughter's head so I can get an idea of what to expect after surgery- I have to say that it looked a bit Frankenstein!  It will take some getting used to and we will definitely need to have a conversation with her older sister before letting her see the scars.

So that is about all that has been happening here, besides trying to stop Stella escaping her cot or strangling herself with all the wires connected to her body!

I will post another update after the first surgery.  

We miss all our friends in Hong Kong and can't wait to come back home!

X Alison

Note from Lisa (SST) to Alison 26 March

Hi Alison,

 

Well done today you brave girl, talking to anyone that wants to quote you is scary enough, let alone having it in print for everyone to read. I am sure you are fed up with talking to us about the media attention but it really has helped enormously. You and Marcel have briefed us all so well - thank you I am sure it's not easy writing this all down. I really like the way you have explained what is going on and how Stella's condition is affecting her daily, it really has helped - as you know Sharyn, Lynn and I really understand medicine from our hours of TV dedication to "Greys Anatomy". I won't give away our characters names although you may be able to guess - please don't say I am Meredith though that would kill me!!

 

Some lovely stories now:

 

We received an email to our SST Gmail account, Sharyn the CIO (chief information officer or Christina in office) Google the name, CSI should really employ her she can track anyone or anything down  - Father Mario Marazzi from Guangzhou had been given the SCMP article by a HK friend and he wanted to meet us "Lordy" we were so intimidated best we sort out who can talk to him?? Yes you guessed it me. He was staying at P.I.M.E HOUSE you would have driven past it many times,  just on your left before fusion. I took Tim along for back up in case I got too nervy. Father Mario, Italian has been helping people here for over  50 years, a small and gentle man who can make a mean espresso (still buzzing). The house is amazing and Father Filippo who resides there also wanted to have a coffee too, they were amazed by SST family walk and the dedication of the villagers and wanted to know how they could help. Father Mario had gone and seen a "business friend" on Friday and showed him the paper and he wrote a cheque out for $10 000, Father Mario also gave a $2,000 personal donation - God bless him.

 

As you know we met Natalie from FABBAS on Friday. We had our usual kitchen table meeting and briefing and some more wines at Sharyn's on Thursday night so we would look and sound like we knew what we were doing. Lynn (Power Point queen and presentation master and attention to detail like you wouldn't believe) created our SST brief and tried to get us focused??? We all ended the night stressed about what to wear, how to get to 60th floor of IFC and Lynn driving!!  Natalie was so kind, she really understands what we are trying to do and the FABBAS group have so kindly agreed to be our trustees - joy oh joy!!! We now can give tax receipts for donations in and our outstanding pledges waiting for us to set up a trust fund will have somewhere to go now rather than a holding bay. 

 

We would love to Skype, you name the time and the SST girls will be free.

 

Loads of love,

 

Lisa xx     

Note from Alison (Stella's Mum) - two more surgeries

Dated:  26 March 2011

“The epilepsy team here at NYU Medical Center has determined that 2 areas of Stella's brain are causing her seizures:  a spot on the left side of her brain and a larger area on the right front of the brain.  Therefore, Stella will undergo 2 more surgeries next week- one on Monday to remove the left spot and another surgery on Wednesday to remove the spot on the right side. The seizure focus area on the front of her brain is close to the area that controls the left side of her body.  There is a risk that this function could be damaged during surgery to remove the tumor. If so, Stella may need intensive physical therapy to restore her left side function

If all goes well though, she should leave the hospital in one and a half weeks.  We might need to stay in NYC for an additional week to have a checkup with the neurosurgeon to make sure she has no infection at the surgery site.

We will probably need to meet with her neurologist also to have a plan for her treatment when we return to Hong Kong.  Ideally, the doctors would like to slowly wean her off her anti-seizure medications- she is currently on two, one of which can permanently damage her peripheral vision if used long term. These medications also dull her learning ability because they are so strong.

Both her neurologist and neurosurgeon are optimistic that the surgeries will greatly reduce her seizures.  Stella has had only one seizure over the last 2 days (probably due to the heavy medication that she is on).  However, we can see a positive difference in her- she is more interactive, energetic and happy!!! Can you imagine how she might be with months of no seizures?  I am so excited to see how she will develop - perhaps say mama or her sister's name.

Alison

A note from Marcel (Stella's Dad) 26 March

We are facing difficult decisions on the next two surgeries for Stella.  There are 5 different options we can choose from, ranging from conservative to bold, with different risk profiles for each. It's difficult for us to truly understand what the outcomes mean for each option. The next operation is set for Monday, we have to get as much information as possible in the next two days and then to decide," said Marcel Sipma, Stella's father.

Despite this pressure, it is so good to know we have such caring and generous support from The Stella Standing Tall community and my employer.  We don't know how we could make it through this difficult time without them.

Marcel