Throughout the whole year of 2021 there was one person who has stood out, has supported us and helped Mason through his struggles, her efforts have been hugely appreciated and she’ll probably never come to realise how much of an important role she's played. She looked out for Mason, was naturally caring, and consoled him when he was struggling through his various stages of treatment. Whether it was making sure he had his favourite toy, blanket, snack or a bottle of milk, she did a great job of making him feel like everything was just normal. He didn’t always receive her gestures graciously each time. There were times when he would throw something back at her, or on the floor, roll away and ignore her or just generally lash out in anger which she found very confusing, but it didn’t stop her trying. The relationship was by no means perfect, with no formal training, her intent to support Mason was instinctive & admirable, especially for someone who was four years old.
Paige is Mason's big sister, there is a three-year age gap, and although disappointed when she was first told about the news of her new baby brother, (hoping for another girl in the family to play ‘dolls house’ with) she has welcomed him into the family amazingly. She’s discovered she can still play dolls house with him, but it’s more like Mason destroy dolls house with earthquake and dinosaurs, then Paige rebuilds everything and makes it neat and tidy again. A slightly different way of doing things.
Before Mason was born, Paige had run of the house, all the attention in our little family and she loved it. No doubt the same in any family situation for a firstborn. Then Mason popped out, and then the real power struggle commenced, she had competition and right now Mason was fresh off the press. She adapted quickly and proudly took the role of big sister gracefully, looking after her new baba. Whether he liked it or not, he got free rides in her toy pram around the living room, but he seemed chilled about it.
Mason has cancer – how do we tell Paige? She is not going to understand. Do we even try, and if we do... how much do we say?
We decided to let Paige in on the truth. If we hadn’t it would only catch us out later on. We knew she wouldn’t understand most of it, but focusing on the positive elements would be the best way to explain and manage her/our expectations long term. Although she’s only four, she is asking us some thought-provoking questions about why things are happening to Mason....then gradually why we always have to take him away.
During the course of the year, there was a lot of family separation. Whilst we had prepared for the worst with Mason and expected a rollercoaster journey on his side it’s fair to say we overlooked the impact it would have on Paige. She missed out on so many school runs, bedtimes, and weekends, and we didn’t know when we could return back to a routine. On the surface, Paige coped very well, for most of the year nothing appeared to trouble her and she didn’t make much fuss. It felt like one less thing that we had to worry about. The odd doctor visit and she was none the wiser, then when we started attending hospital with Maso overnight, the questions ramped up. Where’s mummy & Maso, when are they coming home? are they okay? 'I a bit worried'. Initially, these were straightforward to nip in the bud, but a little more difficult to explain when they kept reoccurring.
Through Mason's chemo, we would be attending the ward three out of four weekends at a time for 3-4 nights at a time, with myself and Em swapping over each night at a time. Paige would not see Mason at all, but she would see mum one morning, then dad in the evening but not the following evening and so on. Our disjointed year meant we needed to leave Paige far more, she spent a huge amount of time with grandparents, attended enough childcare sessions to make us weep each time we received an invoice, and had various people help us to take her back and forth to school in our absence. She was a human 'pass the parcel'. Then when she did finally see him return home he was usually exhausted with a super low immune system - the focus was still on him.
It must have felt like we had abandoned her – or in child’s lingo that ‘we don't like you anymore’
Over the course of the year, she ran through a full spectrum of emotions. She was sad to see us leave each time but ecstatic to see us return. We left her for a week for Mason's operation, which was hard for her but just a few months later we would relocate to Manchester for 6 weeks. We agreed, that the best thing to do was for Paige to keep her routine as normal as possible, she would attend school each day, attend her clubs and be with her friends as much as possible but then visit us each weekend. She visited on weekends with her grandparents, travelling up on the train. They were long days of travel and short weekends, but we made them special. She got to know Manchester well and even had her favourite spots, making requests for the following weekends.
In the limited instances when we were all together, we made our best efforts to be present with her, seizing the opportunity to take her out, do something fun, find a new park or get nice food so she felt special. It nearly worked.
Our real concerns came towards the end of the year, shortly after returning from Manchester, which in fairness was about 8 months since the start. She became quiet when walking to and from school, not wanting to go to school, neglecting her friends, uninterested in things she liked and sometimes unresponsive. Occasionally she seemed withdrawn, and when we started regular school runs again, she didn’t believe that we would be back to pick her up. Each day thinking, we were abandoning her at the door and no matter what we said – we couldn’t change her mind. It hit home, when, one bedtime she asked us if she was going to another family. Looking downward, with deep sincerity she was expecting to be hurt. She must have been thinking about this for a while!
Time, time and more time.
Post Mason's last treatment session, it has taken about 4 months for Paige to return back to her normal, vibrant, energetic self. This was a whole other challenge in itself and definitely one not to be overlooked. No one briefed us on this? And quite frankly our headspace was far more preoccupied with the next hospital visit, surgery consent form, chemo cycle etc…. LATCH Welsh Children’s Cancer Charity put us in touch with another charity they work closely with which is Kids Cancer Charity. Shortly after, Paige was assigned a play therapist, who was instrumental in her ‘return to normal’
Their primary role was to catch up with Paige during school for a 1-to-1 play session, she got time out of class to play with new lego & magic sand but all the while the therapist would ask subtle questions as to how she was feeling? or are you pleased Mason is feeling better? Or, isn’t it nice that mummy and daddy are back home? Did you like visiting Manchester etc… Questions that would allow Paige to ramble to herself, allowing the completion of unprocessed emotions which may still be causing unwanted thoughts, behaviours and symptoms.
The photo used for this blog post was a quick snap photo I took one day when Paige was leaving on the train. It became a thing that she made me sneak onto the platform to wave goodbye by her window, right up until the last minute when the train pulled away – often getting told off and having to exit the platform because I hadn’t boarded.
We are immensely proud of Paige, her resilience and her willingness to understand everything that was going on. To her detriment, she was our silent hero.
We are currently raising for LATCH Welsh Children's Cancer Charity: Please the link below to make a small donation of £5 and enter our raffle with some fantastic prizes:
The efforts of one person can't move mountains. It's the strength of us all working together that makes a change.
