Megan's Head

A place where Megan gets off her head.

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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18 Comments

  1. Jaqueline Dommisse

    Oh Megan this is written with such clarity and empathy. I’m wracking my brain to think of anything more practical to offer other than my tears and love for Shirley’s little family.

    I’m thinking that for three months Shirley and Johnny will need somewhere to stay nearby whichever hospital is chosen. I’ll send links of your blog to my family in America and Europe – I have a sister in Atlanta and a niece in Munich … not actually anywhere near Regensberg or Baltimore, but they may know people who know people…

  2. Jaqueline Dommisse

    My sister in Atlanta said to check out the Ronald McDonald House Charities who run houses for families who need to be near their children in hospitals. I googled and there is one in Baltimore.

    http://www.rmhbaltimore.com/

  3. megan

    Thank you Jaqueline! I know that Shirley has already heard about the Ronald McDonald houses, and she is investigating them. So weird that McDonald does that!

  4. robyn sacks

    Hi Meg, send your story to sabc news.
    They have a new slot for
    Stories like this one and where everyone in
    SA can help. Hopefully someone will be able
    to help. X me

  5. megan

    Rob, that is a really cool idea. I’ll ask Shirley how she feels about that!

  6. Juanita van Wyk

    Megan, I loved your compassionate telling of Natalie’s story. I am sending the Circle of Love details around as much as possible. Shirley and the family are often in my thoughts and we all wish them strength, wisdom and all the very best possible care. x

  7. megan

    Thanks Juanita, I think the more the story gets out, the more we’ll find out how much help there is.

  8. Guy Harris

    What a brave family, they deserve a break and all our support – difficult to fathom why a bright youngster gets such an unlucky break – should rather happen to oldtimers like me! Spread the circle!

  9. Marlene Jacobs

    I remember years ago Ian von Memerty’s child suffered from a rare disease and had to be treated overseas. At that time they needed R1m to cover all the associated expenses. Ian made an emotional appeal on radio to people to please assist. He also had shows to raise funds. I remember that you had to pay the money in at Computicket. Maybe you could approach CapeTalk and they could do an interview with Shirley and Natalie. People are wonderful and especially in Cape Town they ALWAYS respond positively to requests. My thoughts and prayers continue to be with this family.

  10. Simon Cooper

    OK lots of good sentiment – short on action though. Here’s a challenge for those who read Megan’s Head. I will match to the tune of R2 from me for R1 donated by others [up to a maximum of R50000 payable by me] – this means money paid, not pledged. Who’s up for this ?

  11. megan

    Simon it’s fantastic. I think how it could work is if people make payments into the Circle of Love account and send me proof. I’ll then pass it on to you. Also, watch this space for a TheatreSports fundraiser.

  12. Lynda Ingham-Brown

    Try Carte Blanche too, they might be interested and can get the word out.

  13. Anita Perks

    This is a really lovely blog – and Simon’s Challenge was amazing!

  14. Anita Perks

    This blog is written is such a lovely way, and Simon’s Challenge was amazing.

  15. Carol Jessop

    We have made a donation to NataliesCirlce of Love- pleaseadvise Simon.wrt his challenge. Reference Jessop – recovery.

    Love to Jonny, Shirley, Natalie, Kola, Celeste and Sancara

    From Craig, Carol, Julian, Thomas and Robert

    Friends are forever…..

  16. Carol Jessop

    My mother, Sheilah Oates, has made a donation today to NataliesCircleofLove – also reference Jessop – Recovery. Please forward details to Simon for his challenge.
    Thanks Carol Jessop

  17. I am so sorry to hear this devasting news. If you could start a “Natalie’s circle of life” facebook page, I can forward the link to all the wedding photographers and service providers in the industry and see if I can get everyone involved. much love

  18. megan

    Hi Monica
    If you go to http://www.nataliescircleoflove.org/ you can also follow it on facebook.

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