‘Christmas is Coming’! ‘It’s starting to look a lot like Christmas’. These are the songs that often echo in my head as I am wrapping presents and decorating the house leading up to Christmas. This year the songs that echo in my head are, ‘All I want for Christmas’ and ‘Driving home for Christmas’. I am sure my thoughts reflect the thoughts of most of us as we experience a very different Christmas. There is an atmosphere of worry, sadness and anxiety . As a family we have an added complication to this year. My oldest daughter Kirsty is currently in hospital receiving treatment for relapse of her leukaemia
Since March, as we experienced the pandemic, I completed and published my first book ‘Our Family’s Journey Through Disability and Cancer’. I was doing my best to convert a negative year into a positive one for me and the family. I had wanted the time to write and this was my opportunity to write!
However our lives took a turn when my daughter Kirsty, 19 years old, relapsed with leukaemia in August.
Kirsty has been in a London hospital for more than 4 weeks now. We are hopefully going home for Christmas in the next few days.
Since the 17th of August, Kirsty has spent almost 10 weeks in hospital. Prior to this she was shielding till July as she was in the extremely vulnerable group. A difficult situation to cope with for any teenager looking forward to adulthood and achieving their ambition.
London is 3 and a half hours away from where we live. My husband and I have been taking turns to be with Kirsty in hospital. Therefore 10 weeks of our family time has been taken away from us. 10 weeks of Kirsty’s year as a 19 year old has been spent as a patient . Melissa, her 13 year old sister, hasn’t had her sister or both parents with her at the same time at home for 10 weeks this year. My sister in law Shona has helped us through this time. She bubbled with us and isolated herself before she stayed with us. 10 weeks of her time was spent away from her husband and family, just to be with us, looking after Melissa and cooking and baking for us. We are well stocked up with shortbread and cakes for Christmas.
Living through Covid 19 with cancer is unbearable. But like many going through this, we have no choice but to keep going.
Despite being in London for over 4 weeks, Covid 19 has stopped Kirsty and I from seeing my sister and her family who live in London.
The treatment Kirsty has received is called Car- T ( Chimeric Antigen Receptor T Cell). It’s a groundbreaking treatment for leukaemia and lymphoma. I remember reading about it 2 years ago, while Kirsty was still receiving chemotherapy first time around for her leukaemia. I remember feeling happy to hear about this treatment but also hoping Kirsty will never need it.
Car -T is an ‘immunotherapy’. It’s a treatment when a person’s immune cells called T lymphocytes are removed from their blood and then sent away to the USA or Germany. The cells are genetically modified then transfused back into the patient after 4 to 6 weeks. These modified cells are called ‘soldiers’ by some people. This is because these cells are used to kill off whatever cancerous cells that are left in the body. Prior to the transfusion, chemotherapy is given to ‘clear the patient’s bone marrow’ in preparation for the treatment.
There are only a few cities in the UK that provide this treatment; London, Bristol, Newcastle and Manchester. We are fortunate in the UK to have the NHS ( National Health Service) fund this treatment that was approved by NICE ( National Institute for Health and Care Excellence) in 2018.
Outside the UK, some people have had to travel to other countries for this treatment and some people wait in anxiety as they wait to hear if their insurance company will approve funding for their Car- T treatment.
When the coronavirus pandemic hit the UK, several patients who had cancer, experienced a delay to their treatment. If Kirsty was diagnosed earlier this year, she may have had to wait months and not weeks to start Car -T. This might have been because it was unsafe for treatment to go ahead or with the changes to air travel, cells could not be moved out from the UK to be genetically modified then moved back again to the UK . Patients had to continue with chemotherapy till it was possible to receive Car -T treatment as lockdown eased.
The side effects of Car -T treatment is unpredictable, and yet can be serious and sometimes life threatening. It can range from mild fever to being confused or going into a coma to even death.
When counselled, the information we received scared us and worried us. The information given was honest; as it should be. I remember Neil and I walking out of our initial consultation on Car-T feeling numb and not knowing how to feel and what to expect. On one hand it was a positive thing that Kirsty could have a form of treatment that could cure her but the treatment process itself could have made her very unwell or she may not respond to it. No one could predict what could happen.
The treatment process seemed long. An intial 5 days in hospital for apheresis( removal of T cells from her blood), then a wait for between 4 to 6 weeks before being called back in for high intensity chemotherapy for 4 days and then a few days of rest before transfusion of her Car-T cells.
Kirsty has had to stay in hospital for over 4 weeks for close monitoring of side effects. We are now approaching Day 28.
It has been a long stay in hospital. As we packed for this long hospital admission, we had to think about an event Kirsty could look forward to and count the days down to that day. Christmas was the most obvious event to look forward to on the 16th of November!
Kirsty has been focused on counting down the days to Christmas; a sign that going home is getting closer.
In my book ‘Our Family’s Journey Through Disability and Cancer’, I mention how everyone’s journey is different. I also mention the importance of packing a suitcase with the most appropriate ‘items’ to help one through this journey. A suitcase that’s bespoke to your child and family’s need.
For us our suitcase consisted of items relating to Disney, art and craft, a countdown calendar to Chrstmas, hope, prayers and love. All ‘items’ to help Kirsty to keep positive and to focus on getting to the day she gets home for Christmas.
With the help of support workers from the charity, ‘Teenage Cancer Support’, Kirsty’s room was full of pictures of Christmas scenes she coloured in, posters, Christmas chains, Christmas felt decorations and festive lights on her window. Her room looked like a magical castle for Princess Kirsty.
Her room also overlooked the BT tower. We always took note of the messages displayed each day on the BT tower! World Aids day and World Learning Disability Day were some of the messages we spotted.
Kirsty loved looking out of the window.That sometimes took up 90 minutes of a day.We also had a brilliant view of the sunset everyday, as seen in the photo above.
As I write this blog her board shows 7 sleeps to Christmas. It was 39 sleeps when she was admitted. Kirsty has coped well emotionally but 7 sleeps still seems a very long time away.
Kirsty’s determination and strength to keep going and focusing on the positive moments ahead, has helped her get through this time. However, most days she also gets fed up, bored and teary. She is sad that once again she has lost a bulk of her teenage years to being in hospital.
Kirsty’s side effets included a fever which settled with Paracetamol and a mild tremor that resolved in a few days. She also experienced lethargy and a cough.
I found a Facebook page dedicated just to patients undergoing Car-T. I have benefited so much from this just reading about other people’s experiences. It’s also encouraging when success stories are shared. It gives us hope.
I have also had the support of friends, family and church. The journey of cancer is a lonely one. Untill one experiences it, I think it is difficult to fully understand what families go through. However just knowing that people care and are praying and thinking of us is comforting.
Kirsty’s mobility once again was affected by chemotherapy. It has gradually got better with the help of daily physiotherapy.
Kirsty was discharged from the ward and moved into a Clic Sargent accomodation on Day 15 of her Car-T infusion. She has daily hospital visits, checking she is still doing OK. Side effects can still occur up to 6 weeks or longer. We were fortunate the Clic Sargent accomodation for families, reopened just as Kirsty got admitted. It had been closed due to the pandemic. The staff have been great at following strict Covid rules and we feel safe here.
Since moving to this accomodation, Kirsty has been able to go for walks, with her mask on. Kirsty doesn’t normally like long walks but she is appreciating her ability to move around using her legs and not her wheelchair. After a year of isolation, she is enjoying observing the people around her and watching the world go by.
As a family who have had their lives put on hold due to the coronavirus pandemic and then having to go through the journey of cancer again, being in hospital in the weeks leading up to Christmas, we will be the happiest people in the world if we can just be in our own home together for Christmas. Melissa said to me last week ‘Christmas wouldn’t be Christmas without Kirsty being at home’.
We try to cope through this difficult time by remembering the positives in our lives. It is by focusing on the positives can we move on and live our lives. Good health, love, friendship and family to me is the best Christmas present.
However let’s remember and reach out to those who find Christmas the loneliest time in the year. The UK have had over 65,000 deaths just related to coronavirus. There will be a huge number of families grieving loved ones they have lost this year. We lost my husband’s father in January this year.
I take comfort in remembering why we celebrate Christmas. The birth of Jesus reflects hope and happiness.
Luke 2;11 ‘ Today in the town of David a Saviour has been born to you; he is the Messiah, the Lord’.
Watching songs of praise this afternoon also helped instill the spirit of Christmas in me as I listened to the top 10 Christmas Carols in the UK. You can watch it on catch up using the link below.
Below are contact details for Mencap, Mind, Age UK and the Samaritans who are there to provide emotional support to those who need it during this sad time.
‘There will be light at the end of this tunnel’. Hopefully soon with the success of the vaccines.
Here’s hoping for a Happy Christmas and a Blessed 2021 for you and me.
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