Bella showed me a lump on the palm of her hand with a tiny black/blue dot in the middle. It was painless most of the time but as it was on the palm of her hand she would bump it and it would bruise so I took her to the GPs. We got a referal as he didn't know what it was and that was the start of a crazy 6 months...Each step we were told of possibilities but the likelihood small. Started with Dupuytrens Disease (runs in the family so I googled and suggested) then a giant cell tumour. Finally being told it was possibly a Plexiform Fibrohystiocystic Tumour (PFHT) and her tumour was sent to Oxford for further analysis. All positive and 'unlikely as its so rare but any questions?' Duncan was very relaxed so I said 'no it's ok I'll speak in our meeting'. I then googled the disease and saw the dreaded 'c' word. CANCER! About 5 minutes later I called back and had my mind put at ease and every question answered as well as possible. Every step from the first referral has made me nervous but only because it was all so quick. I was told each step was so quick because she was a child and I can not fault any of the service we had from our amazing NHS. An apt Thursday and next one made for Tuesday, only a few days between. I now know this is because Bella is so young but at the time I feared the worst. The staff all the way have been thorough, kind and considerate. The terminology used in appointments has been great to the point Bella knows she had a tumour but no idea she had cancer.
We were then referred to Oxford John Radcliffe Hospital with Lucy. We got the call saying we needed to go back in so instantly I knew the possible diagnosis was now reality and I understood what people say aboit not really hearing the rest of the conversation- it was all a blur. Thankfully our appointment was on time, play area for Bella to play and again certain words were not used so Bella was happy playing while we discussed. We got questions answered and the operation date book. So we booked a hotel so we were close by and not late. We explained that Bella now was losing her awesome Happy Potter scar and was now having a skin graft which turned out to look like a kite! I can not be any more proud of of my eldest at 7 years old or her little sister at 6 that was always going to school and no days off or getting as much of the attention.
Bella had all her needles, canulars, injections, anaesthetic, scars and 22 minutes in an MRI scan with an itchy nose and has barely shed a tear! She has been proud of her bandages. Excited to miss a day of school in favour of a day in bed after and operation AND after 2 days of paracetamol (for the skin graft and second removal) decided she wants to stop her painkillers and try without. I know how I have reacted to some of these and it wasn't pretty.
Bella has now had 2 operations. The first in Basingstoke and was removal of the 'giant cell tumour' and the second was referred to Oxford to ensure good margins (means to remove enough tissue so the edges surrounding the tumor no longer contain tumor cells) were got and we find out on Tuesday if we got good margins.
Bella has now had a CT scan and after 3 days waiting we were at a local farm when I got a call to say she has a an infected lymphnod on her right lung (note to self DO NOT GOOGLE LUNG METASTASIS there are so many variations). I had to go back in and smile while watching the girls. We are waiting to confirm its a lung masastasis on Tuesday 24th July and discuss our further options and treatments. Thankfully although incredibly rare (talking a couple of hundred cases diagnosed) this is a slow moving cancer and we will learn as we go along from one of the best hospitals with the best staff. Having read others stories (some have taken years for diagnosis) I am incredibly lucky and grateful to Duncan, Lucy, Zoe and the histology teams (plus many more) at Basingstoke, Oxford and Southampton for diagnosing so quickly and with sensitivity.
My family and closest friends have been the most incredible people listening to my complaining and worrying whilst distracting and making sure we are all ok. None of us could do this without help with school runs, baby sitting and other ways of helping that I don't need to mention. They are all feeling the pain and supporting me. I thank every one of my family and close friends for their support.
So on the 25th July we got the BEST news. An route to Cornwall we had the appointment in Oxford. Terrified about what they would say, what the lymphnods in her lung was etc...Lucy sat us down and checked the hand and was pleased with the recovery. She then told us that they found another 3mm section of tumour which was positive because it confirms they were in the right place and that was good margins (meaning they had a clear ring around the cancer and it is all gone). The deep tissue samples were clear too which is also great. Now on to the lung...they can to be sure 100% that it is not cancer that has spread however they are optimistic. It is possible that a bit has travelled through the blood and been deposited, or it has spread however they believe it is a simple 5mm infected lymphnods that would happen if you had a cough of inhaled car fumes etc...
We will be back in 3 months for a fresh MRI scan on her hand to give a base picture of the scar tissue for future comparison and they will discuss if they want to do another CT scan to confirm or if they are happy that it is just an infection and so we don't need another. As it stands the doctors are fairly certain Bella is now cancer free! Check ups every 3 months for a while....amazing news!
Quick update, another lump has appeared so they have pulled the MRI forward to next week and have decided to do another CT scan 6 months after the first (december/january).
I want to write this because I googled this disease and very little came up that wasn't written as an official paper. All of the amazing people we have met have been incredible. Quick, open minded and direct. Our NHS has done amazing stuff for us and I am so glad for all of these people from play staff to surgeons. I hope others can see our situation and it might just put others at ease. Its scary, it's hard and financially difficult (not able to work for long periods as self employed and having short notice for appointments) but we get through it. We have to or else the kids will know there is something more serious going on. We learn and research to arm ourselves with some knowledge. Below are our apts and what we found out.
9th October GP apt. Dr no idea what the lump could be so referred to our local hospital in Andover.
5th Feb first referal to Andover. Unsure so scheduled ultrasound.
21st Feb Ultrasound shows a lump but unsure what it was.
2nd March off to Winchester for MRI and chest x-ray both inconclusive.
6th March Southampton trip for second ultrasound and to see paeds oncology and orthopaedic. Unsure but not cancerous. Possibly dupuytrens or fibrous lump. Ortho also agreed.
12th March Basingstoke apt with Duncan. Due to family history it could possibly be dupuytrens either way removal best.
22nd March Bella had removal. Duncan said it looked more likely to be a giant cell tumour but will send to Southampton for further checking.
23rd April Wound checked. Healing well and looks good.
Unsure of date but a call from Duncan to let us know the lump showed similarities to a Plexiform Fibrohystiocystic Tumour. Sample being sent to Oxford Histology for further investigation.
13th June Oxford want to see us ref possible Plexiform Fibrohystiocystic Tumour.
19th June met Lucy and confirmed PFHT. 2nd operation booked in for 28th to get clear margins and skin graft.
28th operation day and all goes well. Although deep not looking like it gone through the nerves.
10th July CT scan.
13th July Called and told its complicated but 1 lymphnod on right lung infected.
24 July planned apt with Lucy to discuss further options, treatments and monitoring.
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