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 

NEW DONATION DETAILS: FABBAS SUPPORTING SST.

WE CAN NOW ISSUE TAX RECEIPTS!!!

FABBAS is now helping Stella Standing Tall to administer the funds raised through various Stella Standing Tall fundraising efforts.

If people want to make a donation, please make cheques payable to Asia Brokers Charity Ltd.  Please d specify that it is for “Stella”.  Be sure to include details of a mailing address should you wish to receive a tax receipt.

Cheques may be sent to:

ATTN: Asia Brokers Charity Ltd.

c/o Lynn Lawrence-Brown

House 396, Sheung Sze Wan

Clearwater Bay, NT

Hong Kong

Should you wish to make a bank transfer, please use the following details:

Account Number:  808-078463-838

HSBC, Head Office

ASIA BROKERS CHARITY LTD

Please send a copy of your transfer slip so we can track all funds going to Stella, and ensure these can go toward paying for her surgery and medical expenses.  Please also send us your transfer receipt and mailing details should you wish to have a tax receipt.  Please post to the above mentioned.

For more information, please contact stellastandingtall@gmail.com

Summary of Stella’s condition and surgical treatment

Summary of Stella’s condition and surgical treatment

Stella has tuberous sclerosis, which causes benign tumors to form in her brain, heart, kidneys, lungs and eyes.

So far, she only has tumors in her brain and heart. But, tumors most likely will grow in other organs later. Her heart tumors are shrinking, but her brain tumors remain an issue.

Stella’s disease is a spontaneous mutation of a gene, which occurs in about 2/3 of the people who have this disease.

The tumors are caused by a defective gene.  In Stella’s case, this it is located on chromosome 16 and is called the tuberin gene.

Researchers are now trying to determine what these genes do and how a defect in these genes causes tuberous sclerosis complex. This gene is believed to suppress tumor growth in the body. When either of these genes are defective, tumors are not suppressed and tuberous sclerosis complex results. The gene also plays a role in the early fetal development of the brain and skin.

Stella is having seizures, which is a common symptom of this disease. However, it is not necessarily true that just the tumors are causing the seizures. Other brain matter around the tumors could also be triggering seizures.

According to Stella’s neurosurgeon, the ‘bad’ brain matter can be at the cellular level and, therefore, not detectable by MRI (brain scan).  Therefore, the best way to make sure we get rid of the bad brain matter is to use a combination of MRI and invasive monitoring via electrodes implanted directly on the brain’s surface. 

Surgery plan

The treatment plan for Stella consists of 3 surgeries:

First surgery: Implant electrode strips on the brain. Stella has 5 strips on each side of her brain, placed in areas that previous non-invasive EEG’s showed suspicious electrical activity. Some of these areas happen to be where Stella has a tumor.

The epilepsy team then monitors her for a few days to see if they can determine what areas are setting off the seizures. We are in this phase of treatment right now.

Stella has had 2 days with numerous seizures and we were told this morning that the team has enough information to understand what is happening.

Stella has 2 active areas, with one being “angrier” than the other.  She has a tuber on the left side of her brain, above and to the front of her ear.  That tuber seems to be firing all the time.

The other active area is the big tumor that she has on the right front side of her brain. That sometimes fires by itself, but is often triggered by a seizure starting from the tuber on the left side of her brain.

So this right tumor is also a culprit, but not as naughty as the one on the left side.

There is also an issue with where this tumor is located – it sits on Stella’s motor function, which controls the left side of her body. If this tumor is removed, Stella may need intensive physical therapy to regain control of her left side. The brain is very elastic at Stella’s age and can be taught to take over functions of missing brain tissue.

There are some days when Stella cannot stand without help because her left side is weak. This weakness is caused by the right side of the brain being “exhausted” by seizure activity.  The right side is so busy dealing with a seizure that it can no longer play a normal role, which is controlling motor function on the left side of her body.

Sometimes, Stella suddenly falls down, called a drop seizure. This is caused by a bilateral seizure – that is, a seizure on both sides of her brain. This can happen when both the left tumor and the right tumor fire off at the same time – and this happens often on a daily basis.

We are now awaiting the epilepsy and neurosurgery team to discuss their findings and come up with a surgery plan. We do know that the surgeon does not like to cut brain matter (resect) on both sides of the brain within the same hospital stay because it is very risky.  This means that the surgeon might remove the left side tumor first and that Stella has to come back to the hospital in a few months to remove the other tumor.

We should know more within the next 1-2 days. 

Second surgery: Remove electrode strips and cut out bad brain matter. Then re-implant the strips or grids (grids are smaller and designed to focus on just one area). These are good for making sure that the surgeon removed all the bad brain from one area.

Then the epilepsy team will wait 2 days or so to see if Stella still has seizures coming from the area that was resected. 

Third Surgery: If there are no more seizures starting in that part of the brain, the surgeon will then go in again and remove the strips/grids and close Stella up.  If there are still seizures, the surgeon may go in and cut away some more brain tissue as there probably are still some seizure-causing cells in the area.

She will then stay in hospital for a few days to recover and then a few days in our flat before we travel back to Hong Kong.

Note from SST Community to Alison & Marcel

Hi Alison and Marcel

Thank god!! And thank you so much for letting us know. We have the toy sale at my place today and everyone that has walked in the door has been holding their breathe, wanting to here good news!

I can't even imagine how this all must feel for all of you. Please know that the love and care for your family in this Village and Perhaps most of Hong Kong is enormous.

We had over a 100 emails in our gmail account yesterday following up on SCMP article. We are now sitting on over $150 000, also still working with some fairly big swingers that want to help out - finance people with very big hearts and so interested and with real concern for your family. We believe that your account must be sitting on over $175 000 - amazing!

Alison and Marcel, besides the obvious love and support we are wishing, the fundraising helps us feel that we are helping out.

We had a great meeting last night about our cocktail night "wishing upon a star" Lynn's magic! Also the 108 sun salutions yoga morning with lovely Julie and her team of yogi buddies.

Sharyn is doing all things, and replying to all the gmails - her cut/paste stills are incredibly fast, she can reply whilst talking on the phone getting prizes to be collected.

Back to my toy shop!

Please give Stella a huge kiss from us, and also for one for you and Marcel.

Loads of love,

Lisa, Sharyn, Lynn and the SST community.

NEWS JUST IN FROM ALISON - Stella out of surgery!

Hi SST Community,

I just want to let you know that the first phase of Stella's surgery went smoothly- the surgeon described it as textbook.

She is now in her crib, but very sleepy.

She has wires attached to every limb, it seems, and small plastic balloons attached to her head to help drain fluid.

I have no idea how to handle her with all these wires! I am afraid I will accidentally pull something out. I guess we will get the hang of it.

We are waiting for the technician to hook up the wires to track the seizures.  Tomorrow she goes for another MRI to make sure the electrodes are in the right places on her brain.  And then we will record about 5 days of seizures and, fingers crossed, the doctors will get plenty of information.  They will even reduce or remove her anti- seizure medications if they have to.

So that is about it for now.

I will next be passing on tips as to how to keep a toddler who is a prisoner in a crib happy for 5 days.  If anyone out there has suggestions, please feel free to pass them on to me!

And lastly, thanks to everyone who has emailed us their best wishes and kind thoughts.

We will be in touch again soon.

X Alison (and Marcel)

Note from Alison - just before surgery

So, Stella was cleared for surgery by the hematologist, pediatrician,

cardiologist, neurologist and neurosurgeon last week.

We brought her to the hospital this morning, where she got dressed in a tiny

hospital gown and we signed lots of paperwork. We then took her for an MRI

(brain scan) where she was given a sedative- it knocked her out in seconds.

I could have used that medicine on the plane ride here!

After she's done there, about 1.5 hours, she will be transferred to the

operating room. The neurosurgeon expects to make the first incision at 1pm

and finish between 5 and 6 pm. After that, she goes to the pediatric

intensive care unit for the rest of this week.

It is now 12pm- Marcel and I are sitting here in the waiting room eating way

too many free cookies and drinking lots of bad coffee!

Will keep you posted.

Note from Marcel

Hi Stella Standing Tall Community,

We just saw the video on the website, really great to see what happened on

the day of the walk, really foul weather, amazing to see how many people

were there, I wish I could thank each and everyone personally.

Sending you guys some pics for the website.

Took stella on a carousel on her birthday.

Last picture is her just before the operation. We are waiting for the

operation to start.

Warm regards,

Marcel.

Note just in from Marcel (New York)

That is amazing! I wish i had been there!

It's great to hear so many people came even when it was raining, what an amazing town we live in.

I can't believe it made the tv news. 

I wanted to write something on the facebook page, but i've messed up my password somehow, gotta sort that out.

Stella and i are waiting for Alison to come back to new york. I've got a nice little cake with some candles and some balloons, she's kicking around now.

The apartment we're in is right next door to the hospital, can't really fathom whats going to happen tomorrow, i try not to think about it.

Her medications are not working that well right now, so she's quite unstable and has more seizures, it really is time for an operation.

In spite of that she is still playing and laughing, she is an inspiration to me.

thanks for everything,

Marcel

Reply from SST - 14 March 2011

14 March 2011

Dearest Alison,

Good lord this must have been horrifying for all of you! How is Stella today? Bless little Sophie she really is such a special little girl - as we say ice cream really fixes everything!

Lynn, Sharyn and I have had fun all day 2 meetings in - our threesome update, event update at 2pm and treasure hunt team update tonight! This village is on fire! The prizes are amazing and the "team effort seem endless". We will have photographers and local SSW you tube guy video it so we can show you and put it on local SSW Facebook and SST Facebook - we think we will have over 150 people!! nury@vittachi.com is putting the event on his Facebook and his website!!!

We received a donation from a lady for $50 000 today - Lynn was shaking when she read it, and then we all screamed!!!

The house sound so amazing we are so happy you are there, they all sound like really caring people there.

We hope you and Marcel are okay; the stress levels must be huge.

Please know that more than a village is looking out for you all here and we all really want to help - this is all we can do so please let us and don't even think about anything other than you and your family for now.

Alison, we don't want edit your letters.
We have tried all day. This is how your life is and as everyone really wants to know how things are going we feel it’s not nice to edit reality.

Loads of love from all of us at SST xxx 

Update from New York - emergency ward!

Sunday, 13 March 2011

HI STT Community:

Thanks so much for the update. It all sounds really exciting and I am glad it is all going smoothly. 

Isn't it amazing how people who do not even know us or Stella have been so generous - I am sure your PR efforts have been a major force in that.  

The wireless Internet seems to be working again do I will try to send through some photos today.

2 hours after I sent you that update Stella ended up at the emergency room.  She had a seizure during dinner that wouldn't stop. She kept shaking, her right hand was like a claw and the right side of her mouth drooped- it was very scary and like nothing we have ever seen before. We raced back to our room, gave her emergency medication and then downstairs to find a taxi.

Luckily one of the house volunteers saw us run out of the dining room- he was waiting for us downstairs and gave us a ride to the nearest ER.  Meanwhile Stella was unresponsive and limp and breathing shallow- all this time we are wondering if there will be permanent brain damage or if she will go into a coma. We ended up at New York Presbyterian hospital, which has a separate pediatric ER. Stella was seen to right away- she was still seizing when we arrived, which meant she had been in the seizure for 25 minutes.  She slowly came out of it and slept for an hour and a half.  A med student gave Sophie a children's activity kit and put on a DVD for her while we waited for Stella to wake up. Sophie was very cool about it all and really well behaved through it all. Later, she got ice cream too from a nurse!  We were discharged around midnight.  Stella seems to be okay apart from being really wobbly.  

Of course, the ER visit was not covered by insurance so it will be interesting to see what the final bill will be- it was US$500 upfront and the rest will be billed to us back in Hong Kong- the hospitals here have complicated billing systems.

So we need to see the neurologist on Monday to figure out what to do next as Stella's surgery is not for another week.

You can put this on the Facebook page if you like as this is the type of stress we deal with every day. We do not know why this horrible seizure happened- maybe jet lag, who knows- her little brain is a minefield!

Thanks for all your work- you are all Stella’s angels!

Xx Alison

SST reply to Stella's Mum - 13 March

13 March 2011

Wow that sounds like the perfect place for you to be!!

Thank you so much for the update, we have been all wishing and hoping that things are going well.

Alison we think we will have over 200 people this Saturday for our family walk the SSW.  SST ladies have been working hard, treasure maps, cake stalls, bouncy castles and more!

The drinks night - a great location in Sheung Wan "The Space" and again some very cool stuff going on, lighting, DJ, singers.

The donations have been huge, 3 amazing holidays, TV, Spa vouchers, laptops, wine and loads more.

We would love to get some snaps from you but don't stress and we are all fine here.

We will update Facebook tonight. Give Stella and Sophie a kiss and a cuddle from all of us and also you and Marcel. We often forget to ask how you two are.

You are all the bravest people we know!

Take care and we are all wishing with the stars every night that everything will be bright and shiny very soon in your family!

Much love,

Stella Standing Tall Community xxx

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