I've been quiet for quite some time. We've been trying to get through this year unscathed, but the doctors appointments are still coming and the side effects are still there and the crippling anxiety over the future still remains.
March was a break through month for us, Quill turned one and Dexter got his lines out a few days before. This felt amazing, we had waited well over a year for the day those awful lines and the feeding tube he barely used came out. It hurt both Jack and I looking at them running through his tiny little body. The worst thing is that Dexter was so accepting of them. We understood they were needed until one day they'd come out - but for Jack and I they were a constant visual of how ill he's been. It doesn't feel natural for any parent to look at wires and tubes coming out of their child and what he's endured to put them in, no matter how life saving and important they are.
It's been six weeks since the lines came out. We've been back and fourth to the hospital over his gastrostomy wound not healing and getting infected and its now over granulating and taking its time to heal. His little scared torso is upsetting, but he is full of life and happiness. Last week; the 14th of may 2021, was the day Dexter got permission from the doctors to go swimming for the first time since his diagnosis. Something in the back of my mind I had worried he would never do again. It was bitter sweet. Before the diagnosis and the treatment, Dexter swam like a fish. He would swim lengths under water, and to see him in the water again was emotional; but the toll the treatment has taken on his body is evident and for me, its devastating. Despite knowing he'll build some strength and stamina and hopefully he'll swim unaided again - the stark realisation hit me. I hadn't thought about how over the last 18 months he had not only coped with the treatment, but sat around resting and recouping a lot while his fitness levels dwindled. I am grateful that he's still here and giving everything his all and I try not to look back at before the diagnosis, but it is hard knowing he'll always have challenges going forward.
His eyes have taken the hardest hit, a result of the proton radiation beam therapy. His face and skin are so sensitive to touch, the chlorine is a hindrance and the goggles hurt his face - but still he keeps on because he loves swimming and he's still enthusiastic to do everything he's always done.
Jack and I are united in our goal to fill Dexter and his siblings lives full of joy since December 2019. It's how we've coped, how we've carried on pushing to the end of treatment and how we don't get weighed down by the magnitude of the trauma we've all felt for the last 18 months. I would be lying if I didn't admit that since moving out of crisis mode I've struggled with my emotions surrounding Dex. I grieve for the simple life we all had before his cancer. I want him to be free from everything he's lived through and I feel more overwhelmed than I did at the start. I'm still shell shocked, it doesn't seem to sink in that this is our life now, living between 12 week scans and endless uncertainty. I resent that Dex has to live with this. I resent that we had to watch him get broken down by the harshest treatment to give him his life and that he wasn't just gifted with a healthy future. Now we have to guide him through a life of side effects, scans, possible blindness, and facial reconstruction because as he grows, any where the radiation touched, those parts of his gorgeous little face won't. As his mother I already see the asymmetry of his face, his eyes and his cheek bones, and I resent it all. I know there are people everywhere, someone with worst ailments or worries, but being as he's my baby, I just find it hard watching it all.
The saying ' what doesn't kill you makes you stronger' is true, but what cancer leaves, the mark on that person, is life changing. I won't know who Dexter would have been without cancer, but he is very much changed from the treatment and I think he will face his time with fearlessness, he's proven that the last 18 months.
I don't know when I will feel refreshed and recovered from this ordeal or when I'll sleep properly feeling secure that he's with us. I'm hoping it'll be in the near future. I thought I was fine, like more than fine. In march I was on top of the world but then the lines came out and the hospitals made me feel like a lunatic chasing them because his wound wasn't healing properly and I wanted him cared for. However, Dexters life isn't in immediate danger so they are back to taking their time. Making us wait 7 hours in a children's assessment unit, fobbing me off with smug surgeons that tell me he's sorry that this has happened but poor healing happens in some patients. It's hard not to scream at them ' he's six years old! He's been through enough.'
The fear that Dexter isn't going to be here forever, plays and skips round the back of my mind, like a tormenting child from an 80's horror movie, cackling and scratching at healthy, positive thoughts inside my skull. I think that thought is why Jack and I felt completing our family would be something we'd do sooner rather than later. So IVF April 2021 we thought yes, we are united strong- we've lost weight after putting on weight during the first lock down, despite pressures and bitchy gossiping from some irritant family members, that was the extent of our worries. So like everything in our lives, we went for it. The cycle was perfect, everything went smooth. We got ten eggs on collection, only three fertilised but it didn't matter we only needed one. On day three all three were looking ok but a little fragmented, neither me nor jack had never heard of this before, but I knew it was over. I spoke to my doctor who told me to be positive, but I had a feeling and on the morning of our embryo transfer day, they rang me to tell me all our embryos had died and not to come. Great.
Annoyed and frustrated, one, at the money that had evaporated but it was more for the dream that had evaporated with it. The dream of some good fortune and joy we had hoped for. After 18 months of hard graft and slogging through, we just wanted to do what made us the happiest, grow and love one more small person to add to our family, but I'm a realist, it wasn't meant to be and I'm not going to sit here and say I was heartbroken, when some people long for one child and don't understand me when I have a house full. Even then it doesn't dismiss the effort, the pain my body goes through, and my heart. Looking at it now I think that both Jack and I underestimated the effects of the stress we've been under, where there is no explanation for why our embryos died, maybe that simply is the answer.
Anyway moving on, it wasn't meant to be and I'm back focussing on my masters, the assignment has been submitted, now I have to wait till June to find out if it was a worthy script or not. Dexter is back at school and happy. This weekend gone, we booked a last minute getaway, to get out of the house and just be a family together with no distractions, even if only for two days it was idyllic and filled with memories. Playing cards on a rainy dat, the kids giggling as we play cards against humanity (family edition), them competitively playing pool with Quill crawling around and clinging to their legs, it was so lovely.
These are the things that matter and we are moving forward, we are going to ensure that we have many more moments like them together. I love rainy pj days, eating donuts. Peeling wet clothes off when the kids cycled about in the rain or hung out in the woodland surrounded hot tub. It felt like a true moment away when our lives have been on hold, like the nations for the last year. I am so excited for summer this year, I can't wait to have a whole month off with all the kids, even after having them at home for the best part of 8 months over the last year.
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