Parental Anguish of a Teenage Diagnosis by Natasha & Dan Lavander

A Parent’s Story

As if lockdown wasn’t challenging enough, imagine trying to get a Doctors’ appointment to look at your child’s swelling in her lower abdomen that was pretty hard to explain over the telephone.

Thankfully for us, one of the senior Doctors at our practice didn’t hesitate in getting us a face- to -face appointment that same day.

When we first visited the Doctor, he examined Liv and asked all the usual questions, did it cause pain, have you knocked it on anything, let’s do a urine sample, etc etc.

Initially I wasn’t too concerned as it wasn’t causing any pain and she was her usual healthy self.

It wasn’t until he left the room to get a colleague to take a look that a wave of panic came over me. He was a senior Doctor and looked baffled as did his colleague. They discussed a possible hernia but weren’t convincing in their diagnosis. He said she would need to go to hospital and get them to take a look at her.

As you can imagine I didn’t get much sleep that night. Dr Google search was in overdrive but even they couldn’t give me the answer I desperately needed. My Doctor called me the very next morning to say take her straight to Birmingham Children’s Hospital they are expecting you.

Wave of panic number two, mind going into overdrive but trying not to show that fear in front of my child.

When we arrived at the A&E department, Liv had all the normal checks, nil by mouth and blood tests-this was a challenge in itself. A complete meltdown, she couldn’t understand why they were trying to hurt her when the lump itself wasn’t causing any trouble. She also had an ultrasound scan. The radiographer was sure there was no hernia present, but we had to wait for the surgeon to view the scans before they could talk to me. After a draining 7 hour wait with no support from my Husband (covid, one parent only). I finally got to talk to a surgeon who looked at the scans and said they think it is just oedema, these things sometime happen in teenagers, go home and we’ll book a telephone consultation with the surgical team in six weeks. If things change come straight back to A&E.

Off we went, waited six weeks, took the call. Explained that the lump was the same. He said he needed to see her so off we went the following week.

He viewed scans and was also baffled; at this stage I thought the lump had moved slightly and asked him to scan her again. He said no point! Again, we were sent away with no explanation and told to come back in another six weeks.

At this point the frustration started to kick in.
During our next appointment we saw another Doctor along with many medical students who announced to Liv that she was a bit of a mystery and no point in them dragging us back in six weeks to tell us the same thing… “keep an eye on it”! That is obvious… your child has a lump in their tummy, of course I’m going to be keeping an eye on it!

She signed us off for 12 months unless things changed. Well roll on two weeks and things did change.

We went on an 18-mile lockdown bike ride one Sunday afternoon, the following day after I returned home from school and my Mum who had been looking after Liv said she now had swelling in her upper thigh. I rushed her straight down to A&E and had to explain the history in a desperate hope that she’d be seen quicker and that she wouldn’t have to go through the whole triage thing again.
They called the surgical team and within 4 hours they’d arrived. Another day another Doctor, he too looked confused and said she needed a biopsy and MRI.

I think my actual words to him were, “this isn’t right, is it?” Trying to gauge the look on his face to see if this was something I should be gravely concerned about. His response was “No it’s not and we’ll get her in for an emergency biopsy asap.” The word biopsy runs shivers through my veins. This was the word that was thrown around when I was growing up. My brother, then 7, has a swelling on the left side of his face. Surely history could not be repeating itself! I now felt I had to hide the panic from not only Liv but also my parents, who went through living hell when my brother was diagnosed with a rare form of cancer in his sinuses.

I remember that night and subsequent nights not being able to leave her side. I slept in her room and just watched her sleeping thinking, why her, why not me. I would do anything for this to be happening to me and not to her. I cried myself to sleep and feared the worse.

The Doctor, after talking to Dr Lander who was the surgical Lead in charge of Liv, called me back the following morning. The biopsy was booked for three weeks later, that to me wasn’t quick enough! I asked if I should go private for this, and he said no and that three weeks is incredibly quick. He also booked an MRI scan which they wanted first. again, having a super sporty, relatively healthy child to this was a shock in itself!

Trying to make calls, chase appointments, work full time and hold it all together was beginning to take a toll on my mental wellbeing. I was signed off from work and prescribed tablets for anxiety.

The next step was an MRI. We both faced this alone as one parent only policy was still in place. I tried desperately to read the radiographers face to see if she gave anyway any clues. I know they can’t comment as the Doctors need to look at the results but when Liv was out of earshot, I begged her to tell me if its anything I need to be really worried about. Much to my relief she said “No you don’t need to worry, there’s nothing nasty there”.

The biopsy was cancelled, and another appointment was booked with Dr Lander who said “it’s a type of lymphoedema that she was probably born with, and nothing can be done. If I cut into that thigh, it won’t give us any more answers!” My parting question to him was …. “You’re a world leading hospital and you can’t do anything for this child? Is that what you’re saying?”

A follow up letter which came in the following days also mentioned an interventional radiographer that may be able to help. I’m still waiting for a response from that Doctor to this day!

More Dr Google and more unanswered questions followed. There was no way I was having ‘she was born with it’; no way was there nothing that could be done, and no way was that hospital casting her aside.

I spoke to the Doctors secretary more times than I’d eaten that following week. She said Liv was under the interventional radiographer now. I asked if I needed compression for her (something I’d read) and she said she’d speak to the Doctor. I had to arrange this myself through our GP who then needed to know what grade of compression to prescribe, so that was another call back to them.

I simply could not accept that nothing could be done, so I got in touch with a private interventional radiologist, Ian, who also happened to work at the children’s hospital part time and agreed to take her case to the MDT to discuss. Well, these meetings were held every two weeks and on numerous occasions were cancelled. More wasted calls. I felt like I was banging my head against a brick wall I just wanted some solid answers as I could see this leg growing in front of my eyes, and I couldn’t do a thing about it.

Having finally discussed her case at the MDT meeting and looking at the various scans, Ian thought she may have a blood clot in her groin which could be the cause. He wasn’t 100% convinced but wanted to rule it out. In between this she had another MRI as they didn’t scan high enough the first time!

Under general anaesthetic she also had a venogram to look for any blood clots which were clear.

Ian was the driving force in all of this and without him I think we’d still be in a very dark place. He had spoken to a colleague in London, and they suggested she should have a lymphoscintigram which Liv said was the most painful thing in the world. She screamed!
We had the option then of being referred to Derby or London. We gathered Derby was easier to get to for us.

There we saw Professor Keeley, who was fantastic in reassuring us and telling us Liv has primary lymphoedema, a rare form as it usually starts in the foot/ankle and works its way up the leg not down.

More scan followed and findings were discussed there and then so we could both see where the problem was and learn why the initial swelling was in the tummy, which has now gone.

In between appointments at Derby, Liv was measured up for school tights and various compression garments. As you can imagine. Trying to encourage Liv to wear this type of clothing was very challenging and still is. She hated wearing them for school as they itched her, and she found it very difficult changing for PE daily, so even in warm weather she used to keep her tights on under her tracksuit bottoms.

If I can, and with the help of others, I’m going to try and get some fashion brands to join forces with medical hosiery companies and design some compression garments for teens and adults alike.

Well, roll on two years and we were given hope that because it was caught early, (not in my book), but according to the medical profession it was. She could potentially have an operation to stop it in its tracks. No cure but a bypass option. The next brick wall being they only perform this kind of procedure privately and she would have to have more dye injected into her feet to see if the op would be viable. Thankfully she was able to have Lymphaticovenular Anastomosis (LVA) surgery, which she had June 28th 2022. Her leg, three-months post Op reduced by 6%. her next and last measurement at Oxford is in August 2023. To put that into perspective, Liv’s affected leg was between 16-20% bigger than her other leg, before surgery.

This has been a very long, frustrating and mind-blowing experience for us all and something we will probably never get our heads around, but if we can help others in this situation, we will do our very best.

We as a family want to thank Lymphoedema United for the support they have given us and the opportunity to share our story to help others.

Natasha & Dan Lavander

Comment from Matt

I am so very grateful to Natasha, Dan and of course Liv, for sharing their journey from both perspectives. Together, they are united in helping families with young children going through similar experiences. A heartfelt thank you to you all.

You can read Liv’s story on our website https://lymphoedemaunited.com/meet-the-members/

Watch Liv’s video on our website or YouTube Channel https://lymphoedemaunited.com/information/videos/

A Warm Welcome to our Welsh Experts

Karen Morgan

RGN BSc PGCEd NMP

Lymphoedema United is proud to include some of the most recognised specialists from the lymphoedema healthcare sector, including Professors, a Surgeon, a Consultant and Therapists. However, the purpose of our Meet the Experts section of the website is to signpost those newly diagnosed, as well as those needing specialist advice and treatment of their lymphoedema. Visit the Meet the Experts page, click on the expert and their area of expertise, location and contact information is listed.

Although the majority of the experts on our panel are based in England, many of them can see lymphoedema ‘patients’ from all over the UK (and some abroad) at their private practices.

Most of us welcome and rely on treatment from the NHS and we have experts from two Centres of Excellence in England; St George’s Hospital, London and Royal Derby Hospital, Derby.

We are delighted to give a very warm welcome to our new Welsh experts, from the Lymphoedema Wales Clinical Network, Cimla Health and Social Care Centre, Neath, in Wales.

Allow me to introduce Dr Melanie Thomas MBE and Karen Morgan, who join our panel and Dr Jayne Williams who writes an article about her new ground-breaking role, the first of its kind in the UK!

Dr Melanie Thomas MBE, DProf, FCSP is the Clinical Director for Lymphoedema Services in Wales.

Dr Thomas was instrumental in developing equitable Lymphoedema Services in Wales and is responsible for the planning and strategic development of Lymphoedema Wales Clinical Network. The Network is embedded in Value-Based Healthcare and aims to reduce waste, harm and variation as well as enhancing learning thus improving patient outcomes, patient experience and quality. Dr Thomas is the Clinical Director of Lymphoedema Wales Clinical Network.

Dr Thomas specialises in breast cancer related lymphoedema and risk reduction, cellulitis management, Chronic Oedema and Wet Legs/Wounds, Compression Therapy, Genital Oedema and the psychological effects of lymphoedema.

Dr Thomas has presented and published widely in delivering innovations in lymphoedema care and involved in many research studies. In 2013, Dr Thomas was awarded an MBE in the Queen’s Birthday Honours and a Fellowship by the Chartered Society of Physiotherapy. She is also a Director in the International Lymphoedema Framework.

Karen Morgan RGN BSc PGCEd NMP is the Clinical and Education Lead for Lymphoedema Services in Wales.

Karen was instrumental in developing the Wet Leg Pathway and driving the ‘On the ground’ lymphoedema educational programme throughout Wales. She has been committed to raising the awareness of Lymphoedema, developing and supporting the creation of many accredited lymphoedema educational units. Karen supports the Director of Lymphoedema Wales with the planning and strategic development of Lymphoedema Wales Clinical Network. The Network is embedded in Value-Based Healthcare and strives and collaborates with many other Health Care professionals to reduce waste, harm and variation.

Karen specialises in lymphoedema management, cellulitis management, Chronic Oedema and Wet Legs/Wounds, Compression Therapy and the psychological effects of lymphoedema.

Karen has presented and published nationally and internationally relating to lymphoedema and chronic oedema care and is involved in many innovative and patient focused service evaluation and studies. In 2018, Karen was awarded British Journal of Nursing Chronic oedema Nurse of the Year.

For further information about our experts and the Lymphoedema Wales Clinical Network, visit our website and click on Dr Thomas or Karen Morgan https://lymphoedemaunited.com/meet-the-experts/

Lymphoedema United members can access the Articles and Blogs section of their pages to read their published documents free of charge.

Psychological Support for Lymphoedema Wales

Dr Jayne Williams
Lymphoedema Consultant Psychologist

A diagnosis of Lymphoedema is life changing, and the challenge to find ways to live alongside it is not a simple one. Yet there are many people who have found ways which can help, and more is being learnt all the time about how to improve the condition.

In this role, I’m keen for us to learn as much as possible about how a wide range of psychological approaches can add to this knowledge. From adding these elements into everyday care, for example, ensuring everyone is asked about the wider impact of Lymphoedema upon them, and how they are psychologically at routine appointments, through to delivering specialist additional services, such as group and individual therapy. We want to understand what difference these approaches could make to the overall experience and outcomes for each person we support.

It’s not an easy challenge – we know that we are all unique individuals who may want and need different things, at different times along the way. We also aim to learn from others supporting people with a range of long-term conditions and align this with Lymphoedema specific needs. It would be great to reach a place where Lymphoedema has similar levels of emotional supports available as some other conditions, like Cancer.

We will be involving people with Lymphoedema and their specialist clinicians in Wales right through the development of the National Psychology Service and promise to share our learning far and wide. It’s an exciting development, and I feel really privileged to be given the opportunity to drive it forwards and see what can be achieved. We will update you on our progress!!

My most recent Meet-up was held at the Crowne Plaza in East Grinstead with a local therapist Kaz Windsor (see Meet the Experts). We had a fantastic response, and everyone was absolutely lovely, staying for over 3 hours!

It has been pleasing to receive comments and messages on social media, in addition to emails asking “When are you coming to: Torquay, Belfast, Liverpool, Norwich…..”. This tells me that there is a demand for these informal Meet-ups across the UK. However, I can’t be everywhere as I live in Kent and bear all travelling costs to each venue, some of which would require a hotel stay.

We do have help from friends from other online support groups, including Craig Solomon from the North-East, Gaynor Leech in the Midlands, Tom Neilson in Berkshire and we will be notifying you of future dates and venues on our respective social media platforms and via email nearer the time.

Just to make it 100% clear, these are not registered support groups. We are inviting people with lymphoedema to join us for tea/coffee at a convenient venue, with the intention of facilitating introductions to other locals with lymphoedema.

If you would like to host a local Meet-up, please email Matt at hello@lymphunited.com to discuss further.

Virtual Meet-ups
To achieve our goal of making this a national project, one idea is to have the initial Meet-up virtually, including people in a specific area/city. Then, with permission, I could share email addresses with those who wish to Meet-up in person locally thereafter.

I would be interested in your thoughts on this. Please email me at matt@lymphunited.com

Some sad news to share with you I’m afraid. Tricia Day, seen in her wheelchair in the photo below, sadly passed away on 27th April 2023, after a short battle with cellulitis that led quickly to sepsis. Our thoughts are with her beloved husband, David, pictured behind Tricia, who invited me to her funeral on Friday 16th June, which I respectfully attended. David nominated the Lymphoedema Research Fund as the chosen charity for those wishing to make donations. Rest in peace, Tricia.

After the success of the inaugural Lymphoedema United Charity Golf Day in June 2022, raising £3,300 for the Lymphoedema Research Fund, this year’s event had a lot to live up to.

With 51 people in attendance, including 40 golfers with lymphoedema and senior management from our suppliers, the sun shone at The Belfry in East Midlands for what was a superb day, and night!

Many stayed over the night before, providing the opportunity to meet others with lymphoedema in the relaxed environment of the bar and restaurant. On 8th June, a full English Breakfast in our private banqueting suite awaited our guests, along with generous goody bags for everyone.

Ten groups of 4 (well almost, as Tom Wright, Haddenham MD, had to pull out the day before, due to a very bad back) teed off with the aim of winning a host of prizes including 4 longest drive, 2 nearest the pin, plus 3 crystal trophies for the winners.

After the golf, we were joined by 4 incredible guest speakers: Jane Wigg, Sinclair Gore (OLP Surgeon), Prof. Peter Mortimer and Amerjit Chohan, CEO of St George’s Hospital Charity. You can watch the videos of their speeches on our website and YouTube Channel https://lymphoedemaunited.com/information/videos/

A delicious 3-course meal was enjoyed by all, before the auction, prize-giving and raffle took place, with some amazing prizes up for grabs.

During the day, conversation was constant and new friendships have been made for life.

Golfers, or their loved ones, with lymphoedema from all over the country united with us and senior management from Jobst Essity, Haddenham Healthcare, Thuasne, Compression Therapy and Daylong, to raise a staggering £6,070 for the Lymphoedema Research Fund.

The winners were Carol Langford, Richard Barrett and James Stevens from Essity.

Next year’s Charity Golf Day is on 6th June 2024.

To reserve your place, email Matt ASAP at hello@lymphunited.com

Keep an eye on the website for further information https://lymphoedemaunited.com/information/charity-golf-day/

Some reviews from the day:

2023 Golf Day Review “As I mentioned last year, the event was far more than golf and this year was no different, in fact, I felt it was even better due to the increased numbers, brilliant speakers and venue choice. I would encourage anyone who has a connection to lymphoedema, whether personally or through a family or friend, to attend this unbelievable event. It provides invaluable opportunities to meet with like-minded and impacted people who understand the emotions of the condition and who can relate to the daily challenges the condition brings to your life. Thank you for organising such an inspiring an uplifting event for lymphoedema sufferers across the UK, you are amazing.” Graham

2023 Golf Day Review “This was an excellent event well run event and a pleasure to meet like-minded people, even if I didn’t play my best round of golf! This was the first time I had ever met or spoken to anyone else with lymphoedema – a very liberating experience.” T.F.

2023 Golf Day Review “This was a very well organised event with fantastic value for money which myself & son thoroughly enjoyed, especially meeting others who are living with Lymphoedema. I am looking forward to the next event.” Nick

2023 Golf Day Review “This was the first golf day we have attended and we really hope it will becomes a fixture in future years. The organisation was first class and we met a great group of people!” Richard

The International Lymphoedema Framework (ILF) Conference was held at The East Midlands Conference Centre in Nottingham, UK, on 13th – 15th June 2023. Sadly, on the 13th, we all woke to the news that Nottingham had experienced a series of vicious attacks, taking the lives of three local people, two of whom studied at the University campus, where the conference was held. Our thoughts are with the families of the victims.

The conference included the new ‘Patient Day’ on 15th June, which I was privileged to chair the mid-late morning session. The ‘Patient Day’ was specifically for people living with lymphoedema to hear guidance, solutions and techniques to self-manage from a line-up of leading medical professionals including Prof Peter Mortimer, Prof Vaughan Keeley, Dr Kristiana Gordon, Alex Munnoch, Dr Karen Morgan, Jane Wigg and Denise Hardy to name a few.

The ’Patient Day’ was attended by around 40 people from all over the country, which in addition to the variety of speakers, included a supplier exhibition and, importantly, the opportunity to meet other people with lymphoedema.

Personally, I was pleasantly surprised at the vast number of international guests attending from countries such as: Australia, Canada, USA, Bulgaria, Kuwait, Uganda, Austria and many others besides! It was a truly inspiring event and it gave me the opportunity to meet new and old friends alike.

Keep an eye on the ILF website for information about the 2023 Conference & ‘Patient Day’ and for future conferences.

https://www.lympho.org/conference

https://www.lympho.org/patient-day

https://lymphoedemaunited.com/international-lymphoedema-framework/