Frank Zapper, masks and tattoo’s??

Now we’re into our next phase, here’s a little summary of what we’ve learned about Frank Zapper treatment (aka radiotherapy)…

Radiotherapy is the use of high energy radiation to treat cancer cells by destroying their DNA and causing cell death. The dead cells are subsequently cleared out by the body. Healthy cells are also affected by the radiation but are able to recover between treatments.
The effects last long after the treatments are administered so the results can only be measured after a number of weeks.

So what does this mean for us? Some things that quite suprised us actually:

Tattoo’s
Plastic moulded foot masks
Drawings all over your leg
Not washing the drawings off (oops)
Lasers
Triangulation
X-rays
25 visits to the K0 department of the LUMC

The first appointment involved a CT scan and X-rays to locate the area to treat.
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During this appointment three reference points were tattoo’d onto Millie’s leg and lines were drawn along the laser sights used to triangulate the target area. A technician created an individual mould of Millie’s foot that clicks into the bed of the radiotherapy machine. The mould is made from a thermoplastic mesh that becomes malleable when heated and hardens as it cools. The plastic mesh sheet was placed over Millie’s foot while it was hot, clicked onto the table with press stud attachments and then moulded to shape and left to cool.

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So by the time they finished, Millie’s leg looked like this:

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Millie was not best pleased at having 3 tattoo’s she had not been expecting…however, as her best friend Bert has promised to have 3 dots tattoo’d to match, she’s now ok with it all! I shall be able to officially call them the dotty twins..

She was however very pleased she didn’t have to have one of the rather scary head masks on display…
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So here’s how clockwork Zapping happens in the LUMC:

We drive 40 minutes to the hospital, park outside the door to the department according to the special rules for radiotherapy patients.
Scan Millie’s appointment card, print out the upcoming appointments and find the waiting room for the machine they will use.
A technician collects us, Millie gets positioned on the bed with her foot in the plastic mould and the lasers are lined up with the tattoo reference points and the drawn lines on the leg.


Two technicians check, check and double check.
X-rays are taken from 2 directions and compared with the previous position she was treated in.
If everything lines up, we leave her alone and watch her from the camera’s in the control room.

2 minutes. Zap. Zap. Done.
Out again within 10 minutes.
40 minute drive back home.

Radiotherapy can have a number of side effects, both short and long term. The most common short term side effects are:
– Redness specific to the area being treated. (Looks like bad sunburn).
– Swelling (oedema), heavy feeling in the limb.
– Tiredness.

Long term radiotherapy can also cause the treated area of skin to become tougher and discolouration and/or swelling (oedema) can be long term problems.

In order to prevent side effects as much as possible, the area to irradiate was calculated carefully. The main goal was to treat the target area adequately while leaving a section of the lower leg unaffected in order to optimise fluid return both short and long term.
Redness and blistering we got big time unfortunately, but the pictures show clearly the area that was unaffected by the radiotherapy:

Thankfully after much discomfort, blistering, peeling, pain & bandages – Millie’s leg recovered well from the radiotherapy. The extreme reaction did however delay the operation by three weeks…but that’s for the next post…

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

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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