Day 1072: October The Month Where It All Began

Today is Bilbo’s birthday, every extra year we have with him is a gift we never take for granted. However, October is now always a really hard month for me. This is the month where it all began.

October is also the month Bilbo was diagnosed with cancer. We know it was during these early days of October 2018 our son was starting to fight his silent battle with the disease. Bilbo’s blood was starting to be attacked from within, our little boy went from being full of energy, to a tired, paler version of himself.

When we look back now we know he wasn’t right on his 5th birthday. We put much of it down to over excitement, late nights and starting school. There was so much going on. I was back and forth to New York twice, I spent a week in London running a work event. We had birthday parties at the weekend, we even went on a Brexit march. We missed the early warning signs.

Mummy Guilt and Instinct

I feel sick when I think about the time leading up to Bilbo’s diagnosis. Could I have spotted the signs sooner if I had been more present. I am haunted by the silent battle Bilbo had to fight, alone. October is full of these ghosts, at every turn and I am wracked with the guilt.

And I know there is nothing I can do to change the past. I am thankful that on the final days before his diagnosis I did listen to my mummy instinct. Mummy instincts are rarely wrong, we have them for a reason. It was clear something wasn’t right and I acted. I called 111 and then I took him to the doctors.

I will forever be grateful that the doctor we saw knew the signs and sent us immediately to the assessment unit at Milton Keynes hospital: Starting A New Journey

Signs and symptoms of cancer in children

Cancer symptoms can be very similar to those of other childhood illnesses. Remember the symptoms we list here are not usually cancer. See your child’s doctor if they have any of the following symptoms:

• they’re unable to wee or have blood in their wee
• an unexplained lump, firmness or swelling anywhere in the body
• tummy (abdominal) pain or swelling that doesn’t go away
• back or bony pain that doesn’t go away, or pain that wakes your child up in the night
• unexplained seizures (fits) or changes in their behaviour and mood
• headaches that don’t go away
• frequent or unexplained bruising or a rash of small red or purple spots that can’t be explained
• unusual paleness
• feeling tired all the time
• frequent infections or flu-like symptoms
• unexplained vomiting (being sick)
• unexplained high temperature (fever) or sweating
• feeling short of breath
• changes in the appearance of the eye or unusual eye reflections in photos

How is Bilbo doing?

Aside from being delighted at being 8 which is 1 year closer to being a teenager. Bilbo is doing really well. However I write this with trepidation. We are very aware that we are still on a very delicate tightrope with his treatment and it doesn’t take a lot to change everything.

Even tonight my mum and I have been exchanging concerns over his hands and feet again. We can never be complacent.

But cancer aside we’ve had a busy 48 days since I last posted, Day 1024: Another Two Months Ticked Off and Covid.

We had the boys best friends visit.

We managed to get away to Mallorca in Spain for a week.

And Uncle Gaggin managed to visit from Germany and Grandad came to stay.

The boys have returned to school.

And in the middle of all of that Bilbo became neutropenic and got flu. He had his lumbar puncture delayed and rescheduled.

Chemo

Bilbo’s chemo is always a delicate balance. Earlier in the summer the consultants increased his doses. This increase was mostly in response to him growing and the consultants worrying that he wasn’t getting enough chemo.

After a few weeks on the new dose, we started to see the tell tale signs of Bilbo’s skin reacting. His fingers were starting to look dry and sore. By the time we had returned from Mallorca, his blood count had dropped quite significantly.

Neutrophils is the number we monitor for his blood. If it is low it means Bilbo is more susceptible to germs as he’s more immunocompromised. The magic number is 0.5 and Bilbo’s bloods came back at 0.51. Bilbo was put on a chemo hold.

Flu

The chemo hold actually meant his skin had a chance to recover and we saw a huge improvement.

But the night before his lumbar puncture Bilbo was complaining of an earache. He went to bed but spent most of the really restless. At 4:00am he was crying in pain. This was an unusual situation for us because normally we’re up at 4:00am on a lumbar puncture day to give Bilbo a little food. This stops him from being sick when he is nil by mouth. 4am is the last time slot we can feed him.

We were torn between keeping him at home or taking him in early because of his ear. Between us we decided the best thing to do would be to go to hospital. We are allowed to give Bilbo pain relief as long as he doesn’t have a temperature. But at this point I wasn’t sure if he could have another dose or not because of his LP.

I threw an overnight hospital bag together just in case and Bilbo and I set off to Exeter in the dark. Leaving Rich to take care of Harrison.

When we arrived the on duty doctor informed me that Bilbo’s Covid swab on the Friday had also been tested for other nasties and it turned out he had flu. This explained a lot.

It was also a reminder that Bilbo has superman abilities to soldier on even when he’s sick, because aside from a few “I’m a bit tired can we have a rest” he’d managed a jam packed weekend with my brother.

Lumbar Puncture

The decision was made to reschedule the LP for 2 weeks time. A decision I wholeheartedly agreed with. However, what this meant in reality was another two extra trips to Exeter. An additional trip for bloods and one for the dreaded Covid swab on the Friday before the Monday LP. Three extra 60 mile round trips wasn’t ideal when idiots had been buying up all the petrol. **eye roll**

Fatigue

We are all tired. The break to Spain gave us some much needed energy to face the next 6 months head on. But it didn’t manage to shake the fatigue Bilbo has for all things cancer. He’s had enough!

He has less resolve to deal with the nonsense of needles. He’s becoming harder to manoeuvre through discussions about whether to do the finger pricks, which hurt his sore fingers or his arm where his veins are super fragile. 1072 days are taking their toll.

He’s refused medicine more times in the last 6 weeks than in the last 2 years. And I can’t blame him.

He’s tired of not being able to run as fast as he’d like, or swim as far as he wants.

End of Treatment

I felt it was time to bring in the big guns…the chart!

We need a visual cue, to keep us going through this last few months. So I’ve made a fancy countdown chart, we do love a countdown chart in this house! We’ve marked it up with all the things we have to look forward to.

I’m also racking up quite the bill in Roblox credits to get us through. So far he’s earned £35 but he wants to keep going to £50 because you get more bucks if you buy in bulk, apparently!

How am I doing?

It’s complicated…

October is hard. So I’m trying to distract myself with focusing on completing the running challenge I started in August. Getting Covid meant I had to pause half way through and I feel that I owe it to myself and those of you who supported me to complete it properly. I’ve ran 6 miles out of 50 with 25 days to go. I’m running for Young Lives vs Cancer because they mean so much to us.

As the ghosts of October 2018 haunt me I am also trying to look forward. We are planning Bilbo’s end of treatment party, we have a holiday booked, we are making post cancer plans. But I am scared. I am scared to embrace life post cancer because I haven’t faced up to the fact we will never be able to go back.

We have deep scars from our experience. No parent should have to watch their child suffer the way we have.

I can’t speak for Rich but I am not the same person I was back then.

Stronger – sometimes.

More resilient – I didn’t have a choice.

But I am different in so many other ways that I can’t even articulate. I can’t change our experience, it happened. But I don’t think I’ve really mourned the carefree life we lost. The one that didn’t have cancer in it, in every minute of every day.

We will never truly be free and that hurts a lot.

Celebration

But today is not a day to be sad, it is a day to celebrate.

Bilbo is 8, we’ve been blessed with 8 whole years of loving him and watching him grow into a phenomenal human. A wonderful brother and a loving friend.

And I am eternally grateful for every second that he is here.

I am grateful for the second chance we were given by science, by the lottery of living in a country where we have access to health care that saved our boys life. We are grateful for every part of the NHS that is supporting Bilbo’s journey to being cancer free and ringing that bell.

We also celebrate Lisa Webb for running the London marathon, completing in a speedy time and raising money for Young Lives vs Cancer, she is still collecting sponsorship through Bilbo’s Gofundme: Donate4Bilbo

And finally we celebrate all the other cancer warriors and their families, together we’ve got this!