Dear Liam: A Letter to Our Son
Name: Konrad and Helen W.
Type of Cancer: Ependymoma
Diagnosed:
By: Konrad and Helen W.
— Categories:
Brain
Pediatric
Dear little Liam, I'm sure you're close by right now, pricking up your ears, and hopefully you don't mind us taking this wonderful opportunity to tell you about yourself and your story, which has also become ours and which we are trying to continue writing here on Earth for you, for us and for all the other little children.
On 6 July 2019, the greatest and most beautiful miracle happened when Liam, our first child, flew to us on Earth and brought a kind of love into our home that was completely unknown to us before. A year and a half later, our lives changed completely once again, only this time the word ‘cancer’ moved in with us alongside love. Suddenly it was winter, not only outside, but also deep inside us. In the middle of the biggest coronavirus lockdown, Liam underwent his first operation in January 2021, and although the tumor could be completely removed, we were devastated because with it went all of Liam's acquired motor and language skills. So a third word fluttered into our house, ‘physical disability,’ closely followed by many other residents, such as ‘fear,’ “powerlessness” and ‘helplessness.’ But there was also love, and most of all there was Liam, with all his radiance, his joy, his strength, his bright smile, when, a few weeks after the operation, in the biggest mess we had ever been in, he managed to press the button on his beloved vacuum cleaner all by himself for the first time. For a brief moment, all the hardships of the past few weeks were forgotten.
Just under two months after Liam's operation, we moved to Heidelberg for his radiation treatment, the three of us, with a suitcase full of words, packed with love that grew stronger and stronger, carried by the strength that Liam gave us. We spent seven weeks in Heidelberg, and if the reason for our stay hadn't been so terrible, it would have been a wonderful time. After the outpatient treatments, the three of us were able to spend our afternoons doing all sorts of silly things and going on excursions, and every now and then we even felt a little bit like a normal family again. Every morning, we took turns accompanying Liam to his radiation treatment, and after we woke his Porti up, he was allowed to press the huge door opener all by himself and off he went to the radiation room, to the hard-working radiation assistants. Whether on the ward, during the radiation itself or in the recovery room, Liam was surrounded by so many kind nurses and doctors who managed to transform a place of terror into a place of warmth, and most of the time Liam was thrilled with the radiation centre. When he walked across the playground holding our hands for the first time one afternoon, we were almost bursting with joy, and suddenly our time in Heidelberg was one thing above all else: beautiful and full of hope.
However, the closer the end of the radiation treatment came into view, the more fear took hold of us again, and with it the question of whether we should continue with chemotherapy for Liam in our hometown afterwards or not. The decision was left up to us, and suddenly it was clear that we had to learn as much as possible about Liam's tumor, ‘his’ ependymoma, in order to be able to decide for or against chemo. With a heavy heart and after countless research and doctor's appointments, we started therapy with Liam back at home in May. And although the nurses and doctors here were also very warm towards Liam, the time spent with the chemo helpers was one thing above all else – terrible. Suddenly, because of Corona, there was hardly any ‘the three of us’ anymore, only ‘the two of us’ or ‘alone’. Our battlefield suddenly expanded, and with the Corona conditions, which hardly allowed us to spend time together as a threesome and limited dad-child time to a minimum, there was suddenly another issue on top of all the big ones that we felt we had to fight against. Fear and helplessness often gained the upper hand during this time, and with them came a feeling of complete isolation. We didn't know anyone, no family, who was going through similar experiences with their child suffering from ependymoma. Even back then, we wished so much for a place to go, to exchange ideas, to share experiences, but above all to support each other.
Feeling like we were on our own and constantly wondering whether we had made the right decision for Liam, he tolerated the chemotherapy terribly, unlike the previous radiation treatment, and the hospital unwittingly became a second home for us. A home that was still filled with joy, play and fun for Liam and was probably ultimately the reason why we persevered with chemotherapy for so long. Because even though the clinic increasingly became a place of fear and separation for us, Liam was able to get excited about it every time, reinforcing our feeling that, if we listened closely, he was showing us the direction of this unknown journey. It often seemed to us as if Liam simply took his cancer and physical limitations in hand, worked around them and trudged through life with them and with us. Or, as Liam's grandmother once said: ‘Even if the cake is completely burnt, Liam still manages to put the icing on it every time.’
So a second winter came, and with it a follow-up MRI, which revealed Liam's first recurrence shortly before we started rehab. After a three-month break, we suddenly seemed to be back at square one, with fear and courage, powerlessness and hope constantly wrestling with each other, and it was hard to tell who was winning and when. Fortunately, we had our courageous referee Liam with us, who managed to bring us back to the moment every time the ground threatened to crumble beneath us, disregarding the rules and diligently awarding points for courage and hope. Less than two weeks after the second tumor removal, Liam was once again happily stomping around with us. We packed our bags a second time, moved back to Heidelberg for another round of local radiation therapy, and Liam discovered at the zoo, which is right next to the hospital, that goats like to nibble on clothes, whereupon he generously offered them his trouser leg to eat every time.
But what would happen to Liam and us after the radiation treatment? The fear that the cancer could come back again was enormous, and simply waiting was almost unimaginable. Another source of hope was Sirolimus, which at first sounded almost too good to be true. Back home, applications were submitted to the health insurance company, but everything proceeded at a terribly slow pace. When you are a parent and constantly fear for your child's life, every wasted minute seems like a bonus for the cancer. After what felt like an eternity, the medication was finally adjusted for Liam, but shortly afterwards, the first metastases were visible on his MRI scan. When we received the call from Liam's doctor confirming the suspicion of metastases and advising us to consider discontinuing further treatment, we were out on a boat ride in a theme park with Liam. He was so excited about this new discovery that he didn't know what to do with himself because of all the fun and excitement, showing us once again that it doesn't matter what happens next. Right now, the only thing that mattered was going for a tenth round on the boat and enjoying this precious moment.
So Liam's third tumour removal was just a brief interlude alongside all the wonderful things we were able to experience with him. For us, it was a constant back and forth between terrible news, such as further metastases in his head and spine that could not be removed, and trips full of life and joy with our sunny boy Liam, who appeared so healthy from the outside and made it impossible for us to give up. Fortunately for us, the doctors saw it similarly and put so much strength, courage and fighting spirit into an immunotherapy developed especially for Liam as a last resort, the last straw of hope that his metastases’ growth could at least be put to a halt. But even before the planned new therapy could become routine, Liam's blood count suddenly became abnormal, and within a few days it became clear that Liam, one year after chemotherapy, had developed secondary leukaemia.
The diagnosis hit us like a hammer blow. Suddenly, Liam's path had taken a turn that was so clear and painful for us to see. With the help of a paediatric palliative care team, to whom we owe so much, we were able to spend two more weeks at home with Liam and our family, during which he learned a new word, played so many pretend games in which he robbed his grandmother as a shoplifter, pricked countless invisible Portis with us, baked in his witch's kitchen and simply loved us with his infinitely big, golden heart. On 1 December 2022, Liam spread his wings at our home and showed us how high he could fly.
And once again it was winter, inside us and around us and everywhere.
‘Grief’ – a new word that not only moved in with us, but filled us, was omnipresent, washed over us, enveloped us, tore us down and carried us back up again. And besides our infinite love for Liam, it was the only thing that made any sense at all. We attended grief support groups, grief seminars, went on grief walks, built a greenhouse for Liam, our great harvest master, in all our grief, got to know other grieving parents and tried everything possible to continue expressing our love for Liam. We were accompanied by the ever-urgent desire to carry on Liam's light, to pass on a little bit of the light he brought us to other families. To be parents to Liam, who brought such a great story to us, who entrusted himself to us with his illness, and whose story we would like to continue writing a little bit for him here on earth.
Two and a half years after Liam's death, other words have gradually moved into our home alongside the big word ‘grief’. The biggest of these is probably Mio, our little ray of magic who flew to us last winter and shines through our thick layer of ice with enthusiasm and pure joy of living. Hope has also knocked cautiously on our door again, giving a name to our former desire to exchange ideas and network with other affected families. We got to know five other families, and together, with the great support of Dr. Pajtler we were able to launch our association EPNKID last year.
Our primary wish is that no family should ever have to feel alone with an ependymoma diagnosis. We want to accompany, support, catch and network, and m
ove together from a passive, powerless role to active action. Together, we want to stand up for our concerns and wishes regarding treatment methods for paediatric ependymomas. We want to exchange ideas and network with doctors in order to jointly create ways and means of initiating studies for novel therapies and research approaches. Our wish is to actively contribute to finding a reliable prospect of a cure so that no family with a diagnosis of ependymoma has to go through the difficult process of saying goodbye.
Our suitcases are once again packed with courage and hope, great joy about where this path will lead us, wrapped in gratitude for all the people who accompany and support us in our endeavour, and carried by the infinite love for our two sunshine children, Liam and Mio, who light the way for us from wherever they may be shining.
Dad and Mom