Following on from my last post I just thought I’d do an update on how we got on and what happened. It was long and tiring as well as exciting and interesting and, as expected, our little lady was simply amazing.
But before I start I just wanted to say a big thank you to everyone who took the time to either comment on my last post or to email me to wish Lucia luck and to share your experiences. It means so so much to us to have support and encouragement from you all as we continue to find our way through this condition.
Here we go
We arrived at the hospital about 9am and met up with Lucia’s therapist, Lynne, and headed down to the Radiology Department. We had told Lucia she was going to get special photos taken of the inside of her legs – a bit like an X-ray – but hadn’t mentioned the injections at this point.
The radiologists were brilliant with her. So friendly and kind and chatted to her as well as to us which we appreciated. They explained the procedure to us, including the injections between the toes – and as you can imagine, Lucia’s little smile turned to fear. But they were very quick to reassure her that they would be putting lots of magic numbing cream between her toes as well as some freeze spray so she wouldn’t feel anything.
So on went the magic cream and we went back out to sit in the waiting room for half an hour for it to take effect. She sat up on Daryn’s knee with a little table and we gave her the brand new colouring book and pens we had got especially for the day and she happily coloured in without mentioning the injections at all.
The toughest part
Then we were called into the room where she was to lie down on the bed for the injections. They had a tv all set up and a choice of DVDs – Peppa Pig made the cut so she lay down to watch a few episodes while we got the worst bit of the day over. And she was amazing. She lay like a little darling while I held her hand and chatted to her to try and stop her looking at the needles. She knew they were coming but she lay still and let the radiologists do what they had to do.
This part was tough. One had to hold her toes apart while the other injected the dye. She whimpered and cried a little when it went in on each foot while I held her tight and Daryn tried to distract her. And then it was over.
Amazing inner strength
Lucia has an amazing inner strength. The courage and resilience she showed on this day had our hearts fit to burst. She has such a strong, fighting spirit that she draws on at times like this – and everyday living with Lymphoedema – all without even knowing it. We say so often she takes everything in her stride – but she can only do this because of that strength and the positive attitude she carries within her.
(Max has this too. He has been through 5 broken bones in 2 years and the way he got through each injury was simply incredible too. The bravery, the patience and the resilience he showed and continues to show each day makes us so very proud.)
Walking, running, dancing, scanning and repeat
Once the injections were over we felt like we were flying! We could see two ‘magic sparkles’ on the screen – one on each foot – and we were then sent off to take Lucia for a half an hour wander around the hospital. This was to try and get the dye to travel through her lymphatics before the next scan.
So we walked up and down 110 stairs, danced, skipped and ran up and down quiet corridors, got a bit lost, grabbed a cup of tea and a pain au chocolate before heading back to get scanned.
Lucia was then made comfy on the bed with peppa pig in full view, while the scanner was lowered down until it was merely centimetres away from her body. She had to lie still for about 20 minutes as the bed very slowly inched its way out from beneath the scanner which was taking constant photos of her.
She was as good as gold – had a few wriggles! – but otherwise lay cuddling her little kitty and watching peppa pig. While she was being scanned I almost felt like I was holding my breath waiting to see or hear what was showing up on screen. Turned out, not much was happening. The dye didn’t seem to have moved anywhere on either leg so we were once again sent off to try and get this moving.
Another half an hour of walking, running, dancing, skipping and stair climbing until Lucia’s little legs couldn’t take anymore and she was back up under the scanner. This time the radiologist said they could see the dye had moved up through the lymphatics of her left leg but the right hadn’t budged.
So this time we were sent away for an hour – and you can imagine how tired Lucia was by the end of it. She did about 12,000 steps overall and boy were her legs feeling it.

Our hospital travels!
Back under the scanner for some final photos but again, things on the right still didn’t seem to have moved. However, this was just a ‘first glance’ at the scans by the radiologist. We know that a lot of filtering and interpretation has to be done to read the scans so in a few weeks we hope to have a better idea of what is going on. Obviously we know her right side – which is most affected – isn’t working well but we really hope that these results will maybe give us a bit more info on why.
And then it was over…
We left the hospital after 2pm and Lucia requested a stop off at a coffee shop for a special hot chocolate and a croissant – which we were more than happy to do! We then headed home to get her some rest and a lovely bubble bath to ensure the injection sites on her toes were nice and clean. I also put some savlon antiseptic cream on too as a precaution, but thankfully there has been no redness or issues.
She was asleep by 7pm and slept a full 12 hours that night. (I wasn’t too far behind her since I had very little sleep the two nights beforehand.) Her school and teacher were fantastic as always and suggested I lift her early from school for the rest of the week to let her fully recover and get over her big day.
So now we wait and hope that in a few weeks we might have a little bit more of an insight into this condition and exactly how it affects Lucia – so watch this space.
Hey Jo-Ann.
I’ve only just caught up on your last post, how amazing and terrifying for you.
when i enquired about this with Isla’s therapist and geneticist i was shut down, told she was too young, she would need t be put under anaesthetic etc.
I really hope you get some answers, i can barely imagine how excited you must be actually knowing how big the problem is and where to focus attention.
it never fails t amaze me just how well our wee people cope with all of this while we are the gibbering wrecks in the background.
fingers crossed you get some answers Heather & Isla xx
Hi Heather, yes it was definitely both! We were told the same thing years ago about her being too young, under anaesthetic, would need to be about 8 years old etc but now it’s done and she coped fantastically. Maybe worth asking again now Isla is older? I think we are trying not to get our hopes up too much that this will tell us exactly what is going on but it would be amazing to know. And you are right, our girls just carry on and cope with everything so well while we can barely hold ourselves together sometimes. They are are true inspirations.xxx
Thanks for sharing! My 8 month old has Lymphedema in her arm, so following your blog is helpful. Glad it went well for her!!
Hi Ashley, thanks so much for commenting. I am so glad you find the blog helpful. Hope your little one is doing well and you have plenty of support.x
Wow, what a day you all had!! Lucia is such a brave little soul – thank you for sharing your family’s journey with us!! ?
She is an absolute little star 🙂 x
Stay strong, keep the faith. I recently had this test done twice, 2nd time was a success for me… 4 hours later. May you find the right doctors to help you thru this process!
Hi Marcia, that’s really good to know that it was on your second time you found out details. All experiences are so helpful to us and we really appreciate any information. Thank you so much for commenting.
Lucia is one mighty brave girl ,she must have been so tired after the injections and after all the walking afterwards,i’m not surprised she slept the whole twelve hours afterwards.She’s just one fantastic girl,very very brave.I hope everything works out well .
Thank you so much for such a lovely comment. She is a wonderful girl and has such courage. She was absolutely exhausted after her busy day but coped amazingly well for only being 5 years old. She is a true super star!