So here is my dilemma,
I would like you to read this with open eyes from the top down for at the end I share my opinion. It’s an opinion based on gut instinct a parent’s knowledge of their child and years of knowing learning to deal with gestures and limited speech from my wonderfully brave and beautiful daughter. I also would like you to know that we are not in denial of the diagnosis given to our daughter in fact we are pretty much living with the facts of that diagnosis daily. Nicola doesn’t know and would have a very limited understanding of what death means so in a way that’s a blessing however it also breaks our hearts.
Princess Nicola
My Daughter presented with late stage Hodgkin’s Lymphoma around January 2013. After much discussion we were told that curative was around 30-40% in her case and that she would start AVBD right away for 6 cycles. Nicola was 26 at the time has Cerebral Palsy and associated learning
difficulties, however none of that should really matter, deal with the disease not the disability.
Nicola’s treatment went per management plan and she coped amazingly with the regime of the lengthy chemotherapy days, often over 6 hours at a time and followed up weekly for her blood monitoring. Nicola’s original diagnosis was never fully confirmed as only a small biopsy was taken from a lymph node in the groin no bone marrow aspiration was ever performed nor PET
scan but we have had many CT scans.
Throughout the 6 months of AVBD the Hodgkin’s appeared to respond extremely positively and other than a little bit of concern shown about one node in her chest she was pronounced as disease free after she got the last CT scan back in October 2013, I think the words used were “its good news there
is no active disease” at this point we all realised just how exhausted we all were. Nicola needed to get on with her recovery and we needed to take some time out for ourselves.
By around January 2014 Nicola had started to get back into a more normal routine and her physiotherapy session started back her mobility had been hit hard during the chemo and with the added complication of the cerebral palsy we had to start to build her movement and muscles back up and get her out of the wheelchair and back to some level of independence. My wife and I went
off for a 2 week break in the sun. When we were away Nicola started to display some weird symptoms which I will list for reference:
We probably had a few others but nothing that was presenting as an overall indication of one particular illness. Although Nicola does have an exceptionally high pain threshold she wasn’t requesting any pain relief on a regular basis, in fact we almost had to force it on her. We were still
presenting at the hospital every week for the check-ups and we consistently brought all of the above to their attention on a weekly basis. We were reassured they would get to the bottom of whatever was going on however that was to prove very difficult.
Fast forward a few weeks Nicola’s eating almost came to a halt she was drinking ok but eating just went to the wall, my wife was going berserk as we could see the weight falling of Nicola. It was agreed that a CT scan should be scheduled to identify or eliminate the possibility of a relapse.
Prior to this we also stopped the physiotherapy as it was just irritating Nicola and we had to focus on her whole well-being not just the physical.
Around a week prior to the scan her temperature spiked over the 37.5 mark and she was taken up to the out of hours GP service in at her local hospital, the Doctor suggested that she had a nasty septic throat infection and accordingly handed out a week’s course of Antibiotics, just the day before her local GP had come out on a house visit and could find nothing in fact she even missed a huge inflammation on the right side of her throat, inflamed glands!! The OOH GP suggested that in his opinion this was not related to her history (Hodgkin’s).
Nicola had started the antibiotics on the Monday and her scan went ahead the following Friday. Almost 2 weeks went by and although her symptoms had somewhat abated they just hadn’t gone completely meanwhile the results of the CT scan came back and the clinical impression was confirmed as relapse Hodgkin’s.
This is where things get a bit grey… the prognosis was terrible and nothing would be offered other than palliative chemotherapy to manage the symptoms until eventually that stopped working and we would lose Nicola though Neutropenia Sepsis. The Macmillan Nurse appeared quicker than the
genie out a lamp and we were directed straight onto the road to hell.
Now some facts, other than point 4 above which seemed to respond
when the Physiotherapy was stopped all other symptoms were still presenting.
Nicola started Gemcitabine as part of the management plan and it would be
administered on day 1 , 8, 15. We were informed that it was a much milder form
of treatment with much less side effects and was to manage the symptoms rather
than cure!
The 1st day treatment went ok although not nice to see my daughter having to go through this cycle again and for what! The second treatment (Day 8) didn’t go so well and we could see the physical change on Nicola’s face. She had very loose bowls followed by a bit of sickness and just was generally unwell. Now considering she had went through AVBD and not once had a reaction or even a bit of sickness then for a milder treatment in ours eyes it was being highly toxic to Nicola. Late on the evening of Day 8 the paramedics were called as her temp had spiked and she looked a bit flushed but they checked her out and decided she was ok but obviously just keep a close eye
to things. The very next evening the temp spiked again however this time it was serious and we were blue lighted over to the main hospital where Nicola was promptly admitted and rapid antibiotic infusion was given and she was moved to haematology ward in the early hours.
Over the next few days things didn’t really settle to a level anyone was comfortable with and discussions were going in a direction that is just unacceptable for a parent, however on or around day 6\7 a different antibiotic was given and the difference was amazing. Within a day Nicola was eating and drinking (Point 1), the irritating cough had gone (Point 2), the sickness had gone (point 3) and the sore throat had gone (Point 5) and we’ve never had a complaint about leg pain (Point 4) back since the Physio was stopped.
So what conclusion did I reach ?
Could all of Nicolas symptoms be down to a rampant infection that she had obviously been fighting since January?
Could a CT differentiated between Lymph nodes inflamed through infection and Lymph nodes growing with Hodgkin’s?
It’s obvious the 1st doses of Chemo had taken Nicolas Neutrophils to such a level that the infection got a proper hold and obviously her own body defences had been trying to hold it at bay for months.
Could Nicola’s diagnosis be wrong!
There is one more thing, at the CT review they told us that they think they may have incorrectly diagnosed the type and are suggesting that it’s an aggressive strain. I’ve read all there is to read and I cannot find any Hodgkin’s being described as aggressive. We’ve had the term refractory\relapse
nothing more and we are awaiting an appointment with the Head of Haematology to discuss where we are and other options…so far that’s been a long wait! are they preparing for my deluge.
Right now Nicola is doing great she’s a happy mobile individual who is looking well, eating well (to well she’s putting weight on every week) and just enjoying life with her family and friends. We can find no lumps or outwardly symptoms no sweats no pain or even hair loss other than thinning from the chemo she is just amazing to cope with what she has done and she done it with a huge smile. If it’s the Chemo that’s doing this then that is great and we accept that however is what I’ve described above just coincidence?
Finally I was chatting to a haematologist and just asked about the consequences of prescribing Chemotherapy for an individual that has been missed diagnosed and does not have cancer, His words “it’s generally more toxic to the individual” more toxic = more side effects = Nicola ?
I will take no offence with whatever your outcome may be I only ask for honesty.
Jomas
