Megan's Head

A place where Megan gets off her head.

Tag: Chordoma

Safe wings for Natalie and Shirley

My friend Shirley and her daughter Natalie leave today for Boston. After two grueling days of travel they will fall into the amazing arms of the USA Circle of Love that has sprung up to hold, help and care for them. The team at Boston’s Mass. Gen will get to know Natalie and they will design special Proton Beam Therapy (PBT) for her before the two operations that she will have. Post operations she will have some recovery time before another dose of PBT to zap the last bits of Chordoma. Shirley and Natalie will be gone for some time, but they take with them the unbelievably powerful love, support, wishes, drives, and complete commitment of their family, friends, colleagues, schools; everyone who has been amazing on hearing the hard news of Natalie’s illness.

You can follow their story on Natalie’s Circle of Love blog or leave a message for them. I’ll also do my best to give you the latest. We are still fund raising (you can imagine how expensive all of this is) and people are thinking of amazing ways to help raise money and awareness. I want to make a special thank you to my meganshead readers for kickstarting the whole drive.

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.

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