Last night I brushed Caroline’s hair at bedtime, a hundred strokes like the Victorians did in the hope of thick and lustrous locks! Her hair is certainly thick and lustrous now.
And curly, a possibility she dreaded during her chemotherapy hair loss. As it regrew after treatment Caroline instructed us to describe it as ‘wavy’ not curly although now she loves the curl. A sea change from her long straight hair before cancer.
Before, during and now
The return of hair to cancer patients is what makes Samsons of our battling warriors. Brushing it is a joy for me, however many tangles. She has hair and that means she’s alive.
Hair Loss and Change
I still have her old hair, odd as it might sound, in a bag with those desiccant silica packets to keep it dry. I can’t let go of such a potent symbol of the loss and change my little girl has had to endure. (We’re writing a post on hair loss but it’s tough for her and she’s struggling to decide if she wants to publish photos).
In the end, Caroline’s hair came away in one huge, matted clump after weeks of her refusing to brush it to avoid it falling out ‘too soon’.
When she finally stole herself to acknowledge it, one of the hospital play assistants shaved the last bit off, on Caroline’s hospital bed, and there it was in our hands. She cried and cried, head buried in my chest. Me too. Caroline’s favourite bead in her beads of courage collection is the one Dr Gail gave her on the day she lost her hair.
We cuddled long and hard that day, unable to comprehend why it had to happen, why her, why us?
There are no answers to those questions and, as can be seen from my blog absence, it’s difficult to put into words. The above was written on January 2nd 2019 yet I had started writing the below two and half months ago on October 18th 2018, the one year anniversary of Caroline first achieving remission.
As at January 2019 she has been in remission for over a year!!!
It’s not that I don’t want to rejoice. Caroline’s remission is amazing. We never dared hope it would happen. She had a malignant and inoperable stage 4 tumour in her head for heavens sake.
It’s just that it comes with so much irreversible change from a parent’s perspective, let alone Caroline’s, that it’s hard to express the ever-changing cocktail of emotion.
One Year in Remission
October 18th 2017 was the date when our incredible consultant oncologist, Dr Gail Halliday, first described Caroline as being in remission. I wrote about the joy and fear of remission back then in what is remission? Here they are, a year on in October 2018.
Caroline still has a long way to go (4 more years) before the ‘big 5’; that 5-year post-treatment mark which is deemed to be the real ‘biggie’ in terms of cancer survival, (most cancers are highly unlikely to return after 5 years), but one year in remission is a massive milestone on the cancer journey which we celebrated with non-alcoholic, organic fizz!
Thank You, Thank You, Thank You
HUGE and heartfelt gratitude to everyone who has helped us get through Caroline’s cancer to this point, not least the superb doctors and staff at Newcastle’s RVI and associated hospitals where Caroline has been treated (I promise to get a post written about our incredible NHS soon). Your constant prayers, love and support are invaluable.
It has been a truly remarkable year. Cancer aside, Caroline would have had a busy and memorable 12 months but given her cancer battle, she has achieved and enjoyed an incredible amount. She inspires me daily.
A Year in the Life
In the last year there have been tough weeks and euphoric weeks. I’m surprised to realise that despite everything we’ve also had an awful lot of normal weeks, slowly returning to life as a ‘normal’ family as much as we are able in the aftermath of cancer.
Incredibly, if you’ve never met Caroline you would be hard pressed to think there had been anything wrong with her from her outward appearance. She seems to be a healing machine!
The photos below are a mini window onto the world of a real warrior and survivor child.
A Parent’s Perspective
There are however, some effects and potential future issues from both the cancer, the treatment and the underlying Neurofibromatosis she is believed to have. These are the things that keep a parent awake on a bad night and stop us ever fully relaxing about our children’s health.
Whenever Caroline gets a cold, upset tummy, extra tired, stressed or even after vaccinations (which are all being redone due to chemotherapy), she can suffer a recurrence of the pains our family refer to as the ‘Gabapentin’ pains.
Gabapentin is in fact a painkiller Caroline took for almost a year to help counteract the nerve pain side effects of the Vincristine chemotherapy drug. Vincristine notoriously causes nerve pain anywhere in the body, not just during each actual chemo dosage but throughout treatment. In some patients it never goes away.
Caroline is lucky that her nerve pains have almost completely disappeared but the pain recurrence she does experience (when under the weather as mentioned above but also for no particular reason) is as saddening for me as it is painful for her.
Cancer in Mind
Since September 2018 she has been experiencing other odd pains in her left leg, knee and foot and occasionally right knee. Mostly it doesn’t affect her mobility though it has slowed her up in cross-country running at school and caused her to limp on a short hike at Cubs. She’ll tell us when she’s in pain and is really sensible about regulating activities herself.
When it first started, thoughts immediately turned to Leukaemia (which often manifests as bone pain) but I pushed them away.
CHILDHOOD CANCER AWARENESS: A doctor had told us that children don’t get bone pain, so if ever your child describes bone pain that isn’t associated with an injury, please take them to a GP straight away.
I put it down to growing pains, Gabapentin pain (though it was different) but all the time was thinking it could be a return of the cancer. It’s awful. That immediate fear will never go away though I suppose it may ease in time. Who knows. In the end, when it started to affect her running at school I called the hospital in December.
It turns out that Caroline is experiencing the sporadic pain from an underlying condition, Neurofibromatosis, which is what may have caused her cancer (another post I promise to write soon – she was probably born with it and was symptom-less until the cancer). We have an appointment in February with the top UK (and European?) Neurofibromatosis consultant for whom we have lots of questions.
Staying Close to ‘Our’ Hospital
Whilst all her future monitoring could be done at most UK hospitals, the staff here know Caroline, and us, intimately. If we move elsewhere it won’t be the same. I can take Caroline to the RVI, to ‘our’ hospital, and the staff will know her, her history, her problems, even whether she looks herself or not on that particular day. And that is huge for our parental peace of mind.
To that end we’ve recently decided to buy a house to enable us to stay close to the hospital even if Michael’s job takes him elsewhere.
It’s been a massive decision since we’ll end up being 2.5 to 11 hours from all our family and old friends although we have a fantastic network of new and amazing friends in the north east who’s support has made the whole transition easier.
Even though Caroline’s remission is looking strong and positive, her illness has changed every aspect of our future hopes and aspirations as parents and as a family. Things we previously took for granted – our pensions, job security, accommodation (what if things go downhill in years to come and she doesn’t want to or can’t leave home?) and, vitally important now, the stability of friends and school life – require re-evaluating and planning in a way we never considered before.
Security and Stability
In order to be able to support Caroline through the coming years, we need to maintain our own mental health as parents, including putting in place lifelines and processes for our own well-being and ‘sanity’. This is the same for all cancer and serious illness-parents. It’s not easy, and walking is usually what helps me find clarity.
Reflections on Life as a Cancer Parent
This riverbank walk is a place of peace and solace for me (although the river is rarely as still as in this recent photo). It is a good place to reflect on life’s trials.
We walked here with old friends who visited just a month before Caroline’s diagnosis in 2017, Caroline fully engaging in a riverbank escapade despite how awful she must have been feeling.
It was walking here that I took the call, a couple of months later in 2017, which confirmed my gorgeous best friend was dying from cancer (believe me it’s hard to maintain the belief that your child could survive this disease when your best friend has just lost her own 6-year cancer battle..), and it was here that Caroline showed some incredible resilience and zest for life during her chemo- and radiotherapy.
Parental Hopes and Fears
As a parent, cancer will never be far from my thoughts. It’s the same for all cancer parents – it’s not an inability to forget or learn to cope with what has happened it’s simply that your child could have died and you will never be able to return to the carefree state of life you were in before their diagnosis.
You hope and believe that the disease will never return but every tiny lump or pain they experience has you on tenterhooks for fear that it has returned.
Perhaps one blessing is that our kids will never know how it was for us parents, how it is for us now, constantly, unless as future parents they find themselves in the same horrific situation, God forbid.
Children are so ‘in the moment’, certainly those around Caroline’s age, that her cancer is almost simply ‘a part of life’ for her, as inexplicable as that is to us adults.
I don’t think she currently re-visits her experiences though from what we are told it is often in the teenage years that the trauma of treatment can affect them. We can only be at her side to hold her hand through it, if and when that happens.
More than the thought of the illness itself, I think it’s all the check-ups and MRI scans that cause Caroline the most stress now she’s in remission. She becomes withdrawn, silent and distant on virtually every hospital visit.
Grief for the Future – Emotions with no Name
As parents, it’s difficult not to worry about the possible implications of cancer on Caroline’s future but we can’t allow ourselves to dwell on these things.
Occasionally I am overcome with moments of deep sadness about what she has had to endure, inexplicable feelings of loss, grief and sometimes feelings that I don’t have a name for. Unnameable emotions. Emotions of regret. Mostly triggered by photos or memories of her pre-cancer activities and debilitation during treatment.
Invariably there are tears and that is usually the best way to dispel the feelings and move on. Caroline’s aware. She’ll often hug me just at the second I’m about to well up! She hasn’t cried about it for a long time though, which is interesting.
The worst emotions are our fears for Caroline’s future: – the unknown effects of the treatment on her fertility, the possibility of kidney damage, the possibility of secondary cancer and the possible facial asymmetry from the radiotherapy as she grows.
Additionally there are also potential issues due to the Neurofibromatosis which we are just starting to acknowledge and understand. The pains and susceptibility to future lumps and bumps to start with. Deep breath.
For other cancer parents and patients reading this, there is life after cancer, and we and our kids can live it to the fullest.
I don’t think Caroline’s achievements in the last year are as a result of any particular determination because she has had cancer, it’s more the fact that she endured and overcame the illness which has given her a new quiet confidence and self belief. It’s not a precocious over-confidence. Just a gentle security in trying new things and knowing her limits and boundaries and capabilities and that everything is actually possible.
After a year unable to swim due to the central line in her chest, Caroline has gone from level 3 to level 8 in swimming since re-starting in March! Back then she could barely swim 10m, with a weakened left arm and huge fatigue in the pool.
By October she could swim hundreds of meters, doing 10-18 lengths per session. She doesn’t want to compete, it’s all just for fun and because she can! This month she has decided to stop swimming lessons and join a lifesaving group to learn new skills.
Caroline had never been to school or pre-school (here’s my very first Kids of the Wild article all about it) and had already enjoyed some wonderful life experiences prior to her cancer diagnosis. However in early 2017 I struggled to get a handle on life after her cancer and found myself unable to provide the educational input she needed at that point.
We found a fantastic village school of just 30-odd pupils (the next best thing to home education!) who agreed to take her on a flexible basis (initially 2 days a week, currently 3). She is absolutely LOVING it, especially the fact that they have a full day’s beach school each week (forest school without the trees and a bit more sea!).
I cannot thank the teachers enough for their support in the last few months. They have been hugely professional and understanding.
Charity & Awareness
Sarcoma UK – Caroline hosted a Big Picnic for Sarcoma UK (her tumour is a soft tissue tumour known as embryonal Rhabdomysoarcoma). Her picnic photos (in dressing gown with no hair) are at the bottom of this page on their website.
NECCR (North of England Childrens Cancer Research) – this year Caroline’s school have taken on NECCR as their charity of choice for fundraising, and Caroline has been asked to help launch their 40th anniversary Children’s Cancer Run to be held in May.
Children with Cancer – Caroline’s story has been used by Children with Cancer UK to help promote childhood cancer awareness and raise funds for research.
CLICSargent – She and Otto were also interviewed by CLICSargent (who provide social and financial help for families of children with cancer) about the importance of having a teddy or cuddly toy during treatment. The article appeared in their ShoutOut magazine which young cancer patients received for 2 years during their treatment. If you haven’t seen it, Caroline and Otto the Bear are slowly writing their story about Caroline’s cancer.
Rays of Sunshine – In September 2018 we travelled to London to watch Harry Potter and the Cursed Child for Caroline’s cancer wish through the charity Rays of Sunshine. She had the time of her life and it was a surprising respite and break for us parents too. Read about our trip here. She also attended a wonderful Christmas party organised by the charity.
While still hairless in 2017 Caroline decided she’d like to join a theatre group and took part in a youth musical of Treasure Island in March 2018 where her newly sprouting pixie haircut looked fab under her chemo bandana, the ideal pirate costume! She’s since taken part in a musical version of Peter Pan and sung in a hundred strong choir of children and adults at The Sage concert venue in Gateshead. An incredible experience and very proud parent moment. She’s also enjoying dance classes but is often too tired to go as they are on a Friday evening.
She attended three Cub camps in 2018, including a 9-day jamboree near Newbury, all fuelled by the last nutritional supplements left over from treatment, to replace lost energy.
Cancer Side Effects, Update and Protocols – where we’re at now
MRI monitoring – for the next 2 years Caroline’s MRI scans (to check the tumour is staying away) will be 4-monthly as opposed to 3-monthly. She loves the extra month away from the hospital!
Endochrine & fertility checks – starting later this year, there will be 6-monthly blood tests to check Caroline’s hormone levels, due to the possibility that radiotherapy damaged her pituitary gland during treatment. Appropriate treatment will commence if there are any changes or abnormalities. We have an upcoming appointment with an endocrinologist to learn more.
Osteoradionecrosis – we have to take extra care of Caroline’s teeth and avoid knocks to the jaw due to the possible weakening of her facial bones from the radiotherapy treatment, which could trigger the painful onset of osteoradionecrosis, bone death due to radiation-induced blood flow changes
Voice therapy – this seems to have been very successful so far with Caroline’s voice returning almost to normal. Her therapist thinks the palsy in one of the vocal chords may be reducing and she is having a further naso-endoscopy in March to check
Vaccinations – all childhood vaccinations have now been completed (chemotherapy wipes out immunity)
Ears, and hearing – treatment has left Caroline susceptible to hardened ear wax especially after swimming and we are awaiting an annual hearing check to ensure her hearing remains stable
Neurofibromatosis (NF1 mosaic) – this is the underlying genetic condition that is believed to have caused Caroline’s cancer. It causes tumours (usually benign but sadly not in our case) to grow along the nerves. I’ll write more after our specialist meeting in February. What we know is that it isn’t the full body strain of NF1 but a ‘mosaic’ form, in just the left side of Caroline’s body.
General Monitoring Protocol
Going forward, Caroline’s protocol for the next 4 years is as follows: –
This year (Year 2)
4-monthly MRI, chest X-ray and clinic visits
6-monthly MRI & chest X-ray/clinic
Years 4 & 5
Annual MRI, 6-monthly chest X-ray/clinic
If everything remains clear after 5 years no further imaging is carried out.
– 4-monthly checks at maxillo-facial hospital dentist
– 6-monthly hormone checks
– Annual sight, hearing, cognitive development testing
Here’s to another year of continued improvement and achievement, fun, adventure, time together and love.
Massive thanks again everyone (for reading this far!), supporting and joining us on the journey and helping Caroline on her return to health.
To learn more about Caroline’s cancer journey see Caroline’s Rainbow.