Day 1404: Ringing the Bell and Moving On

After 4 years of cancer we are finally in a position to start moving on. When I wrote back in April Day 1268: Chemo Finished – Another Milestone Ticked Off I was in a very strange place. Ending treatment was overwhelming and there was so much emotion. Fear of the unknown and having the safety net of treatment removed, felt incredibly scary.

We were excited to finally be able to ring the bell with friends and family and despite giving ourselves a month to find a new normal I wasn’t in the best place. Bilbo was still taking his weekend antibiotics and he was still struggling physically. There was also the added complexity that some of our cancer friends were having a really rough time. Two children who’d been on a similar timeline as Bilbo had relapsed.

Cancer Family

On this journey we have met some amazing families. Families who have had to show strength beyond anything I can even imagine. We have met people who have become dear friends, some we’ve never even met in person. But the one thing that binds us all is the devastating news that our child has cancer.

Every single one of us have battled through our own challenges, linked by children who show bravery beyond anything any of us can truly understand. I am so grateful for their support on the ward, in the middle of the night in our Facebook communities, the direct messages and the random acts of kindness when we’ve needed it the most.

They are the family that we didn’t choose but the people we couldn’t have got through this experience without. And to all the families we’ve met on this journey you’re in our hearts as you continue to fight or find your new normal. And a special mention to those that didn’t make it. I think of you often and send strength to the loved ones left behind by this cruel disease.

Cancer in Numbers

As we move on I’ve reflected on the last 4 years, our Beads of Courage have acted as a visual reminder of what Bilbo has been through. We now have thousands of beads. Each one representing a step closer to finishing treatment and a symbol of Bilbo’s bravery.

Bilbo was on chemo for 1233 days and his treatment included:

• Losing his hair twice
• 5 bone marrow aspirates
• 8 different types of chemo
• 1170 doses of chemo
• 92 community nurse visits at home
• 77 visits to hospital
• 15 overnight stays in hospital
• 48 dressing changes
• 1 ambulance ride
• 198 antibiotic infusions/prescriptions
• 23 lumbar punctures
• 26 anaesthesia’s
• 2 surgeries
• 8 blood transfusions

In addition to his treatment we have driven 6000 miles getting to and from hospital. To put that into perspective we could have driven from here to Thailand.

Moving On

As part of the reflection I am finally coming to terms with the last 4 years and we’re moving on. Cancer defined us for so long and one of my fears was not knowing who I was without the drugs, the fear of hospital admissions, the infections, the nausea and Bilbo’s suffering. But time as they say is a great healer and we are healing.

Spending some important family time has helped a lot. We went back to Ibiza in May and returned to Italy last month. For the first time in 4 years I felt like we were getting back to being the Godber’s the Godber’s that travel and it has inspired me to start thinking about how this blog that I started in a world before cancer could again be a blog about our travels, about recording memories for our boys and about sharing our travel tips and advice for travelling with children.

How’s Bilbo doing?

I am happy to report that Bilbo is doing amazingly well. I remember a conversation earlier this year with one of consultants Dr Simon. He told us that once Bilbo was off treatment we would see a gradual improvement and then one day it will hit us just how well he is. I am happy to report we are there. I catch myself staring at him doing something, trying something or saying something and I feel an overwhelming sense of happiness and pride. Our boy is back, his appetite is back and his energy is back.

In the last few months he is excelling at swimming. He is now going three times a week including training with the Brixham squad on a Thursday evening. On holiday this summer he has been working hard on his diving and he can’t wait to start competing.

Now his feet are better he is able to enjoy running and football. Football has become an obsession for him and Harrison. Every night they are out in the garden practising their skills, scoring goals and getting stuck in. And both boys have chosen Nottingham Forest as their team of choice.

And cognitively the chemo fog has lifted and he is thriving at school. He has gone from being behind in most subjects to being on track and even exceeding expectations in reading. This makes me particularly proud because it has only been possible through his sheer hard work and determination. Bilbo has put the hours in and has tried so hard, and the hard work is finally paying off.

Ringing the Bell

And so it was with a great sense of pride that we finally rang the bell (twice). We rang the bell with family in April. It was a lot for Bilbo, he was overwhelmed by the amount of people there on the day. But it was an important milestone because having the party in Milton Keynes gave us an opportunity to ring the bell with some of the people who had been there from the beginning. To celebrate with the people who helped us in those early days and beyond. It was an opportunity for us to say thank you and to celebrate the second chance Bilbo had been given with the people that love us most.

Then in July we rang the bell at the hospital. I thought about whether it was needed after doing it in April. But July in contrast was more intimate and Bilbo wanted to read the ringing the bell poem. But most importantly it was a chance to say thank you to the team of people who helped us in the last year of Bilbo’s treatment. The nurses and doctors who helped us through some of the hardest months.

I am so incredibly grateful to the oncology team at the Royal Devon and Exeter hospital. They didn’t know Bilbo from the start but they made our move seamless. They were there for us in the dark days of Bilbo’s last year of treatment when he was literally falling apart from the side effects of treatment and I was falling apart mentally.

Last Blog About Cancer (I hope)

So I think it feels right to move on. To stop writing about cancer and to start writing more about our wonderful adventures in Devon and beyond. This will be the last post I write (hopefully) about our cancer journey. Whilst the worry will never go away and we know that there is a long road ahead. Bilbo still needs to be immunised and we have a number of scans and check ups to check on the effects chemo may have had on Bilbo. But we are remaining positive and the fact is BILBO MADE IT! WE MADE IT! and now our little family is ready to not be defined by cancer but to be defined by the unknown adventures that lie ahead!

Whilst we are moving on we will continue to advocate for the childhood cancer. In fact September is Childhood Cancer Awareness Month. Children’s cancer organisations mark Childhood Cancer Awareness Month (CCAM) each year in September. Although they raise awareness of childhood cancer all year round, during September they focus on increasing awareness of cancer in children, as well as the work they do to support children with cancer and their families. It is important to raise awareness because childhood cancer isn’t that rare, childhood cancer research is woefully underfunded. And scarily it can often be incredibly challenging for parents to be taken seriously when getting a diagnosis.

You can learn more here: https://www.cclg.org.uk/ccam/about

Thank You

And so my final few paragraphs are words of thanks. Thank you to every single one of you who has helped us on this journey. The food that was left on our doorstep. The letters, cards and pictures that were sent for Bilbo’s Wall of Love every single word meant so much. For all the gifts, toys, endless books and vouchers that got us through every tricky treatment and reward chart. Thank you for all the messages, comments and support that kept us going in some of our darkest days.

Thank you to every single one of you who have donated blood and joined the donor register in the name of Bilbo the Brave. Help Bilbo Raise Funds for Cancer #Donate4Bilbo and for all your donations to the charities that mean so much to us. We’ve raised thousands of pounds for Day 1193: Young Lives vs Cancer and World Cancer Day 2022 and The Henry Allen Trust and we know that every penny will have helped families like ours.

You never know what you are capable of until you have no choice, we didn’t pick cancer, cancer picked us and what it taught me is it really does take a village. I am so grateful that our village was full to the brim of the most wonderful people from across the world who provided the strength we needed to get through the last 4 years.

My final thanks goes to our family, we love you and couldn’t have done any of this without you.

Rich you have been our rock, Harrison as a sibling of a child with cancer you have been so brave in a way that you should never have had to. Thank you for your understanding when you missed out on so much and had to witness so much suffering.

And thank you to Bilbo for teaching us all what it means to be brave, you are our hero!