It's been some time since I've written anything, I love to write but finding the energy is increasingly hard this year, and last year we were enjoying our lives. I'm a superstitious person, i'm being haunted by lone magpies, they sit looking into my window, have flown at the car and are always nearby. I always salute the magpies and dread seeing one lone bird, even though I know its nesting season and that's why there's so many single birds out there, but still I feel the drop of my chest when I see them, I still think they are one for sorrow and sorrow is knocking at our door and were getting their messages loud and clear.
2022 hit with force, Jack and I felt for the first time in two years, we could get away for a few days to London and live a bit of our old life, before Dexter was unwell, before the anxiety, before when our dreams and goals made us driven and fast paced, we stayed at the Ned for three days, we did normal things, ate, drank, hugged, argued about nothing, it was perfect to feel like we had no bigger worries and for us it was a first for a long time. We had Dexters march scan coming up on the 4th and neither of us felt concerned, he was looking good, eating well we'd had no nose bleeds life was sweet.
On the day of the scan they had added measures, a ct scan and a longer imaging process, it instantly worried me, but we had been talking about Dex having a surgery to open up his nostril and drain his ears of fluid, so more checks were needed. Alex our doctor had rang that evening and said we'd hear from our man consultant Jessica the next day, still we thought it was to talk us through the surgical options. When she asked for a video meeting we knew someting was wrong, and after 15 months of stability she informed us that Dexters cancer had relapsed. They thought at this time it was a secondary tumour and the bottom of our world fell out.
What made it worse is that they wanted Dex in for a biopsy but he had contracted covid and one by one the whole family came down with it. It was the worst timing and it meant that Jack and I had to send Dexter into hospital without us, he was taken in by my dad who was amazing at getting him through it, but the surgeon wasn't confident to cut through the back of his nose and he couldn't see it where it had indicated it would be on the scan, that day he said it was unlikely to show anything and still we waited another two weeks for them to confirm a second biopsy was needed. So now five weeks later a neurosurgeon did the job, he went in and debulked the original tumour, left it growing round the main artery going into his brain and confirmed that it was the same tumour and the cancer was not operable and not curable, even now I can't write this without the words stinging, it physically hurts, it makes me want to scream and shout for it to not be true, that he's ours to keep and question why this has happened, when we did everything right, everything we were told and I really didn't understand their was so little to be done if a rhabdomyosarcoma relapses.
Chemo would give us a year is what they said, they wanted him to go onto a trial where basically they treat the dying to see which drugs keeps them alive longest, I wasn't happy to play the game and it gave me no peace thinking we were helping future children, because dexters cancer and location is so rare, I don't think it will ever get the funding and research needed, I don't think its important enough to the world, despite it meaning the world to parents like myself and jack, parents desperately trying to find a way to keep their children.
the first round of Chemo made Dexter very poorly, his poor little body was at a great disadvantage for everything he had already lived through. they were setting up for him to go on the trial, they had the scans in place and in the same morning, we were told dexter was no longer eligible for the trial because he'd had VI- but they would still scan to see how things were going.
The day Jessica rang to tell us the scan results she wanted another video call, I immediately knew it was bad news. I was in London hours from home, I said they would have to tell Jack and I would have to hear it from him, Jessica didn't want to speak to him without me, I instantly knew the cancer had grown, and I thought a different route of treatment would be needed. I headed home, on the train I dialled in and listened through my air pods. It war far worse than I could ever have imagined, I sat listening to them telling us that the cancer had grown so aggressively through the treatment that we didn't have a year we had weeks, I can't tell you pain and panic as I silently sobbed into my dress as I tried to take in the news. It was the worst day of our lives, despite knowing the worst is still to come.
Deep down I never believed we would outrun the cancer, I thought we would have years and here we are now faced with weeks, and then Jack and I have been sentenced to a life of grief and pain, longing for our child to grow up in the family he loves and adores so much, its just so torturous and painful.
We had to make the devastating decision to stop treatment completely and accept the short amount of time we have or risk killing him by subjecting him to more chemo that is only hurting him, not the cancer. We made the decision that day that Dexter has been through enough, and he deserved his last days to be as happy and healthy as they can be, he is so much more himself for not having his body pumped full of poison and had try and wrap our minds round the truth, he has fought and still is fighting with such stoic bravery to live, he did everything in his power to overcome this consuming cancer and in the end he will be unable to defeat it.
As a family we have tried to shroud Dexter in continuous love, happiness and we are all focusing on making every day as good as it can be. We are living day to day, right now we are 7 weeks into our original 6-8 week life expectancy, he is doing remarkably well with just one patch and barely any pain medication. he is painfully thin but still he is eating and drinking and continuing on, he has so much to live for we think we are doing a good job of keeping him with us by making sure he has things to look forward to.
Jack asked for 'Dexters den' to be built in his families home, and him and his siblings have been having nice days together, we have allowed the children to have time out of school for the good days, because we know the bad days are soon to be around the corner and then school might be a welcome distraction when the playing stops. For now we are spending time as a family, making the most of our last moments together, birthdays, fathers day and making any celebration a good one for our last times as a complete family.
The sorrow that fills me with as the thought of the summer ahead without Dex is so heavy, but we try to shun it from the forefront of our minds so we can continue to enjoy the precious time we have.
I can't believe how quickly the tides have turned and how quickly we lost the battle at what felt like the final hurdle, the impending loss, funerals and darkness ahead is something Jack and I dread, but we are so blessed it will be Dexter's siblings and the joy they bring to our lives that will carry us through. The Von Tatchenstines are a strong unit and we will carry one another with the stoic strength and determination Dex has demonstrated and taught us throughout his life...but for now we can push that to one side and enjoy every one of Dexter's cheeky laughs, warm hugs and tight embrace, because he's the most affectionate boy in the family, he's such a sweetie.
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