Team G-day

So here they are; the experts who will extract the remaining nasty *!@#! from Millie’s leg and then reconstruct it beautifully.

Dr. Sander D.S. Dijkstra Dr Dijkstra
Dr. Dijkstra is the orthopaedic surgeon who specialises in orthopaedic oncology, specifically leg tumours and spinal surgery. He’s a very jolly chap indeed as you can see!
He will be resecting the tumour and carrying out an organic transplant using Millie’s own fibula to replace the piece of tibia he will remove.
As Gordon has shrunk so well, the plan for reconstruction has been adjusted and is now thankfully less aggressive. This means (hopefully) that recovery time will be quicker and time to weight bearing will be shorter as the tibia will only be partially resected.

It is really inspiring to talk to a specialist and hear him speaking so enthousiastically about his work. Organic transplants, titanium transplants, 3D bone printers and state of the art equipment. An operating theatre full of computers. The possibilities themselves represent an incredible range of technical brilliance.
It’s the last place I would want to be, but on the other hand I would LOVE to be in on the surgery!

Thankfully, our super surgeon is currently on holiday with his ‘Charlie’s Angels’ (I quote..!) and has ensured Millie he will return refreshed, relaxed and ready for G-day..

Dr. Dijkstra will be operating together with Dhr. G.K. van Drunen Dr van Drunen
Dr. van Drunen is the plastic surgeon who will put Millie’s leg back together as beautifully as possible. I’ve checked his credentials, I will insist he does beautiful stitching and I shall be inspecting his work carefully!
If I can make some of the places I have to stitch look beautiful then a leg should be a piece of cake…;)

But.

Before G-day arrives we have to get through a number of weeks of radiotherapy.

25 radiotherapy treatments have been added to the schedule as the chance of resecting the entire tumour with an adequate safety margin is increased when radiotherapy is given prior to the operation.
Millie’s tumour is a Ewing sarcoma of the bone but a section of the tumour is in the soft tissue between the tibia and fibula. Bone tumours that are confined to the bone are not treated with radiotherapy. However, if a bone tumour extends into the soft tissue, this element responds well to radiotherapy.

The radiotherapy is administered locally and kills all cells it comes into contact with, both cancer cells and healthy cells alike. The treatment works on the premise that cancer cells are unable to repair and reproduce themselves whereas healthy cells can. Additionally, the radiotherapy causes the tumour to encapsulate which makes removal easier for the surgeon.

So, this is why we will be visiting the LUMC daily for 5 weeks of radiotherapy alongside the continued 3 weekly chemotherapy.
I’m beginning to think we should just set up a tent outside…

Playdoh Gordons!

After hearing the excellent news that the chemo is working really well and Grumpy is shrinking and shriveling nicely, I wanted to see the newly measured dimensions in a more tangible way.
So we decided to get the Playdoh out and spent a rather pleasant hour together modelling Gordons.

I have to say it was all rather satisfying and serves extremely well to illustrate the effect the chemotherapy has had.
I was somewhat flabbergasted by quite how much Playdoh I needed for the pre-chemo Gordon.

Millie very proudly modelled the latest version 🙂

…and now that we have an operation date, we can look forward to Gordon be Gone day, otherwise known as G-day.

Gerald, jam, jelly, Toblerone, mango, fluffy socks, pillow pets, pizza, hugs and lots of chocolate milk are obviously a perfect combo.

Check it out…

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Haircuts, posting plaits and wigs

Chemotherapy causes hair loss. This is a well known fact and yet comes as a shock 01f0c7a6dcb04f7d01ce9bfaef4f6f0c305fed9168when you are actually confronted with the reality.

Of all the things she is facing, this is the hardest for Millie.

We knew about hair donation for wig making, actually from Millie herself who was thinking of doing this for a charity last year, but at the time her hair was a bit too short.
So after thinking about things for a while, I wondered if we could donate Millie’s own hair for a wig for her?? Why not?
After many conflabs with my ever patient sister Jane and the expert advice of Gillian at
Mark Hill’s salon – we were put in touch with the wonderful ladies at Shepperton Wigs in the UK who advised us on what they needed to make a wig and how to go about it.

The next task was to find a hairdresser who could help us to cut Millie’s hair off in the correct way in order for it to be usable for a wig, after the photo shoot, but before chemo started.
So I did some research online and discovered that certain salons offer a service for hair donation cutting and then I contacted Toni & Guy’s in Rotterdam. It turned out that the style director had experience ‘harvesting’ hair for a wig and after I explained the situation, we were squeezed in for an appointment that fitted into our schedule.

I have nothing but praise for the Toni & Guy salon in Rotterdam. On the day of the appointment we were delayed in the hospital, got caught in horrible traffic and turned up late, but they still went out of their way to accommodate us.
Talk about arriving stressed!

They had reserved a whole row in the salon for us so there were no other customers directly around us and went out of their was to look after us with drinks and so forth. Most importantly, Millie’s hair was cut beautifully, retaining some length at the front while making sure the plait that was cut from the back was enough for the wig makers.

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The hair was plaited first to keep it all together.

 

 

 

 

 

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Then the plait was cut off. This took a lot of cutting because Millie’s hair is so thick!

 

 

 

 

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Millie proudly presenting her plait!

 

 

 

 

 

 

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Emma inspecting the end product…

 

 

 

 

 

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Me transporting the very precious plait to the post office. I have never been so nervous putting something in the post!! Luckily the lady in the post office in Delft took over 1/2 an hour to check all the details for super precious international delivery and made the whole shop wait. Just before christmas too!

…and so began the life of Aslana Twigofski! She will be arriving in Holland on Monday 10th February and we can’t wait…!

Another day at the LUMC

Gallery

This gallery contains 4 photos.

Thursday 12th December 2013 We seem to be becoming regulars here, we even have our own favourite nuclear medicine man (definitely a cool department to say that you work in methinks)… Millie is becoming a superhero for someone who hates … Continue reading

A day at the LUMC

Gallery

This gallery contains 2 photos.

Wednesday 11th December 2013 This is the day we spent in various waiting rooms, seeing numerous specialists and discovering every corner of the LUMC. Zones, floors, clinics, wards, chemists, lifts, stairwells with interesting numbers… the list goes on… So to … Continue reading

Grumpy Gordon

Introducing Gordon.

In our bi-lingual family there are often interesting combinations of Dutch and English created. So, after a loooong process to even get as far as a diagnosis of a tumour in Millie’s leg, she decided to refer to it as her ‘gezwel’, or ‘swelling’ in English. After much discussion to find an appropriate name for said gezwel, Millie decided on Gordon. At the time we didn’t know what sort of gezwel he was and were hoping he was a Good Gordon.

Turned out he was Grumpy.