Megan's Head

A place where Megan gets off her head.

Month: February 2011 (Page 2 of 3)

My friend Shirley and her daughter’s story

I helped my friend write her story yesterday and I am posting it here. Let me know what you think, see if you are able to help, or share your ideas about how to make this a reality.

On the night of Mon 3 Jan 2011 Natalie Cohen, who is ten, woke up in pain. The next day she went to see Dr Fiona, a paediatric pulmonologist, about the pain in her chest. When she examined Natalie Dr Fiona was concerned because she was having breathing problems, so she ordered X-rays. Then all hell broke loose. The X-rays revealed a giant tumour, stretching from her spine all the way to her breastbone. The tumour was pressing on her wind pipe. Natalie was sent straight to have a CT scan. Natalie says, “I went sliding into the bagel!” She was brave and together even though it was terribly frightening. She was booked for surgery the next day, the 5 Jan. The five and a half hour operation was performed by an all woman team, led by Dr Susan Vosloo, an internationally acclaimed cardio-thoracic surgeon who trained under the world famous Dr Christiaan Barnard. The aim of the operation was to relieve the pressure on the airway and to do a biopsy of the tumour. The cut went from her nipple, all the way along her ribs, around her side, onto her back and up to her shoulder blade.  Natalie was on life support for four days. You can imagine what her mom, dad, brother Kolla and all her friends and family went through.

The biopsy results came back and the doctors were totally shocked. They asked for a blind second opinion from independent pathologists to confirm Chordoma, an extremely rare form of spinal cancer, which almost never affects children, and usually affects older adults, with tumours presenting in the base of the brain or the bottom of the spine. There have been only three recorded cases of thoracic Chordoma since 1960! This cancer has also destroyed four of Natalie’s vertebra, but fortunately, her spinal cord has not been affected.

Natalie, as soon as she was off the respirators, started recovering and got stronger every day.  After only two nights in the paediatric ward she was allowed to go home.

It soon became apparent that the South African team of specialists, while being experts in their field, had limited experience with the treatment of Chordoma, which needs surgery to remove the tumour and to reconstruct the spine, followed by an eight week course of Proton Beam Therapy.  (Proton Beam Therapy is a type of radiation treatment that has seen excellent results specifically in Chordoma patients, and it is known to cause less damage than traditional radiation therapy. My layman’s understanding of how it works is that this treatment is much more targeted, bending beams around organs to aim at and zap the affected areas.) Natalie can only have this therapy in Boston because it’s the only place with the right technology for her very particular needs.

Shirley and Jonny, Natalie’s parents (who, for clarity, are not together), had little time to get over their complete shock, and had to learn fast, getting in touch with the global Chordoma network, following up leads, contacting specialists, and teams of specialists, all highly specialised in their own fields! Jonny has been a hero, scouring the globe, navigating the complexities of Natalie’s particular case. Shirley has been up, talking to the world all night, since they are on different time zones. One of the huge issues is that nobody knows how much time they have before surgery, and how fast the cancer is growing.

There are currently three possibilities for surgery, and they are a multi-disciplinary European team, with the actual surgery in Regensberg, Germany, or a team at Mass. Gen in Boston, or the team at Johns Hopkins Hospital in Baltimore, Maryland.  You can imagine the complexity of putting together this kind of journey, let alone the three days of surgery at the end of it all.

Natalie, Shirley and Jonny are expecting to be overseas for about three months, leaving Natalie’s nine year old brother in the care of family and friends back home. The decisions that need to be made are technical (medical expertise), emotional, and financial (the costs of overseas treatment, regardless of where, are huge and will run to several hundred thousand $). The urgency on the financial side is that the medical costs need to be paid up-front!

We are all only starting this journey of finding money, love, information, support and following all the ways possible to make a surgical cure for Natalie a reality. Shirley, Natalie’s mom, has always talked to Natalie about being held in the Circle of Love, and Natalie’s uncle has set up Natalie’s Circle of Love Trust. This Circle of Love will now expand across the world, everyone holding and being held.

In the meantime, Natalie is going to school (when she feels strong enough), swimming in the sea, drawing beautiful pictures and doing her normal stuff.  But mostly, she can be found with her nose in a book.

*All advice, input, cash, connections are absolutely welcomed. If you can help with money, please go to the trust for account details. If you have other stuff (including winter clothes for if they have to go to a really cold place), let me know and I will facilitate the process.

friend’s faith

Simon asked me to upload these pics. Says it’s what I’ll be in six months’ time. I feel like the kid with the aspirational poster on the wall!

I can see it. Wave of bliss.

Slightly stiff, slightly sunburned

I woke up this morning looking a bit like a cherry tomato. I forgot to put sun block on my face, thinking I would be protected by my (Jaqueline’s) wetsuit. When we stopped off at Jaqueline’s house for me to try on her wetsuit I wiggled into the bottom half and jumped a little over enthusiastically when she suggested I ‘jump myself in’. She was pulling at the back, you see, and I baleka’ed towards the coffee table and missed hitting it with my head by mere millimeters. I cowboy walked back to the car, before setting off to the surf shop to hire me a board.

Once the guy at the shop had established what I wanted and reiterated the fact that I would be doing very little besides walking the board into the waves and then turning it around and trying to get on it (right on every score), he gave me a thing called a soft board; similar in shape to a mini-mal but much more buoyant. Unfortunately Big Friendly had to carry the thing to the beach because my arms are too short to get it under my armpit, surfer style. I have to carry it with both hands. Before we left the guy said that the rental was for an hour and a half but I could have it for as long as I wanted. He wasn’t nervous that I wouldn’t be back within the allotted time. Right again.

It was great, great fun. It was my first time in a wetsuit. It was my first time on any board of any description, if you could call 10 seconds a pop being ‘on’ something. It was hard work. I am stiff this morning and I didn’t even ‘do’ anything. But I am already planning my week to include another session. Lucky I am underemployed at the moment.

Best Valentine’s prezzie ever.

Wave of Bliss

It’s a magnificent, quiet, still, hot Monday morning and I’m being taken to Muizenberg to play in the water with a rented mini-mal surf board. This is Big Friendly’s brilliant St Valentine’s day gift to me. Original, romantic, spectacular. I love it.

Phew Phew, smash, crash, yeeha, Nic and Ninjas!

Yo! I need a whole new style to write about this show Nic Danger And the Rise of the Space Ninjas. It opened last night at The Arena at the UCT drama school campus and it runs to the 19 and it’s a flippen jaul!

Sci-fi, physical comedy, space kung fu, mad raps, very funny singing, hilarious overhead projector animation, a classically bad/brilliant reworking of a few major artworks, lots of space travel, lots of figurines (of the hero, the baddies, dinosaurs), brilliant manhandling of the pieces of set, weird seventies cozzies, about 30 different characters, hilarious masks, slow mo, human sound effects, buckets of sweat, many small throwing bomblets, dancing, send-up dancing, gibberish, many moustaches, one saviour ‘tash, Arnold Schwarzenegger’s incarnation, Gys de Villiers in Noah’s character, great bad lighting, quick-fire changes, quick fire, an oracle, a hologram, a space mission, hand puppets, glove sex, ballet, team work, heroes, funny robot war, weird frog potty thing, alien PS 7 game, ‘running away like little girls’, alien council, confrontation, abduction, conversation, mission accomplished.

Nic Danger and the Rise of the Space Ninjas is one crazy shit storm of a piece of live theatre written, directed and performed by the insane, hilarious and talented Nic Davies, and also performed by the very brilliant Brendan Murray (who I’ve only seen doing stand-up before and he is much better at this shit!) and the fabulous Trent Nightingale. It’s fantastic. Fathers should take their sons, and then try out the whole show at home again. I loved the hell out of it. It is the kind of thing that all people who are bullshit-theatre-sniffer-outers will love. It will appeal to a Theatresports audience, and even Theatresports players (Brett, you in particular), it will appeal to Star Wars and District 9 fans, it will appeal to young kids and other people. It’s kak funnny, and delicious, and clever and accessible and I couldn’t believe it was over when it was done.

Bookings on 076 907 5082 or thepinkcouch@gmail.com

Tickets are R50 / R40 students

Lekker Rob van Vuuren

My first visit this year to my favourite Kalk Bay Theatre was last night to see Rob van Vuuren. He is working on a new show, and new material to put in a new show, and he is trying it out on and for an audience there on Sunday nights in Feb.

There is no stuff; no set, lights, costume, no ‘show’ really, as Rob came on, dragging a chair from upstairs (which he didn’t even use). Wait, maybe that was intended to create that ‘no show’ feeling on purpose? Hmmm. Anyway, Rob introduces himself (and last night he introduced his whole family, who were there, including Bijou, the smallest show stealer and daughter and proud making dad machine), and then he tries out some stuff. And he is pretty hilarious. Very hilarious actually.

I am not going to crit the show; mainly because of how Rob feels about critics, and I just can’t get the image of the virtually retarded newspaper critic, rolling eyes, licking lips and drawing lines on a very small piece of imaginary paper, out of my mind. But I am going to say some stuff about it and hope that he isn’t going to rip me off too badly when I’m not there! (Zane, you don’t know what you missed; it was a challenge bru!)

Rob is a million different kinds of performer on stage; moving in and out of styles, voices and faces, from moment to moment. Natural guy having a chat, mad manic Jim Carey face, actor, stand-up, joker, physical performer, audience slayer, improviser. He is brash, gentle, loving, over the top, full of swearing, mad, shouty, rude, personal, intense, and most importantly kak funny.

Not all his material works or is developed, but that’s the whole point of the exercise. To see what does and doesn’t. And that’s part of the fun; being the guinea pigs. The problem is going to be who to listen to about what to keep and what to throw out. Big Friendly and I couldn’t agree on stuff all the way home last night. But hey, this is my blog, so I get to say what I like. Big Friendly loved the sperm stuff. Not so much me. I loved the dog stuff, a lot. I loved the actor stuff; particularly the german ad director. I loved the last pathetic joke about the huge gollum toenail on the airplane. And I loved Mal and his whole family, but I don’t know if Rob will ever get them back.

If you find yourself wanting to end the weekend with a big smile on your face (and/or his face), go check Rob out this month every Sunday. Call the Kalk Bay Theatre booking line 0732205430 to book.

PS. He looks nothing like that funny pic when he does this thing!

Page 2 of 3

Powered by WordPress & Theme by Anders Norén