Bilbo and Harrison
Bilbo's Journey

Day 1024: Another Two Months Ticked Off and Covid

64 days ago when I asked for help. We were drowning. I was drowning. I am pleased to be able to share it no longer feels like that, despite Covid-19.

As I scroll through the photos on my phone a lot has happened, over the last 2 months. Looking at the images they give me a warm fuzzy feeling. There are more happy pictures in my phone than sad. Every other picture isn’t of Bilbo’s hands or face to send to his oncology team. And in the excitement of a busy few months we completely missed the 1000 days of cancer milestone.

What were we doing on 25th July? Bilbo and Harrison were smashing out swimming badges. Bilbo collected his 25m and Harrison got his 10m. We were also getting ready for H turning 5.

Busy 2 Months

And it has been a really busy two months. We’ve packed so much in.

  • The boys completed their school term
  • We bought a kayak (Little Nanny)
  • Harrison turned 5
  • Everyone enjoyed watching a lot of sport including the football and Olympics
  • We made new friends and had old friends visit
  • We’ve spent A LOT of time spent at the beach
  • I got Covid

How’s Bilbo Doing?

Firstly he’s much better. He isn’t out of the woods yet but things have improved so much. What caused all of the issues is still unknown. I am not sure if we will ever really understand what cleared up the problem. It could have been the folic acid, that helped heal Bilbo from the inside out. As soon as he started taking it we saw improvements. Firstly in his energy and then his skin started to clear up.

Improving Bilbo’s energy levels changed everything. He was able to contribute at school more, he was able to walk home from school. Hang out at the park and the beach.

As his skin improved so did Bilbo’s confidence and his ability to do the things he loves. We stopped needing the lotions and potions. I stopped having to battle with him every night.

In my last post I shared that I didn’t want to get complacent and I still don’t.

Monitoring Closely

We are still monitoring Bilbo very closely. His skin is a million times better but we’ve still had a few bumps in the road. His toe for example started bleeding again last week. We took Bilbo back to Exeter to have it swabbed and checked. No infection was found. However the slightest thing and I can’t help but panic. Bilbo also has some rough bumps on his face, again I go straight to panic mode. His lips look dry and chapped or his hands hands mottle I am back taking photos, just in case.

We are also very aware that we didn’t really get to the bottom of any of it. I haven’t shared some of the details about all the tests Bilbo had. Especially around his metabolites and some concerns our oncology team have about whether he’s getting enough chemo. And I won’t share it right now. Not for any other reason than I don’t understand it enough. Since this blog is about helping people I don’t want to share misinformation.

Chemo Doses

What I can share is that all leukaemia patients in maintenance are monitored closely from bloods, to chemo doses, weight, height and so much more. When Bilbo first started maintenance his oncology team carefully calculated his doses over those first few weeks. His team increased or decreased depending on his weekly blood counts. Until we got to the correct dose. Over time children grow and chemo is adjusted to factor this change in.

But children can also have their chemo decreased if their blood counts get too low or they are neutropenic. Chemo doses vary considerably from child to child and I’m yet to meet a child who’s had a straight path.

Bilbo’s oncology team have been concerned that some tests are showing that Bilbo needs more chemo, but have been hesitant to increase the dosing whilst he had such horrible side effects.

Now his side effects have eased, they have increased his chemo and we’ve been waiting over the coming weeks to see what the impact (if any) is.

Another example of how chemo, even in maintenance is relentless.

Living Life

Olympic skateboarders in the making

As Bilbo got better, we grabbed the opportunity to take full advantage of life in Devon. We’ve been enjoying lots of family time and time with friends. We continue to pinch ourselves daily that this is our life and that we get to live here.

The boys are continuing their swimming lessons and have expressed dreams of participating in the Olympics. Harrison is torn between becoming an Olympic gold medallist at skateboarding or swimming. Bilbo is certain that he can combine his love of swimming and riding his bike, maybe a future triathlete.

Or maybe they might take up paddle boarding or kayaking.

Our new paddle board from Uncle Gaggin
Little Nanny left us some money when she passed last year, so we used it to buy a kayak and here she is on her maiden voyage.

50 Mile Challenge

50 Mile Run Challenge

And for my own mental health I signed up to a new Young Lives vs Cancer running challenge for August. I need to run 50 miles over 31 days. And I was doing brilliantly by 14th August I’d ran 24 miles.

Your can follow my Young Lives vs Cancer Challenge here: Donate4Bilbo THANK YOU to Rachel, Maddy, Selina, Piers, Di and John, Anna and some anonymous donors, for your generation donations.

I was commenting to my mum on Friday that running challenges are like my nemesis but this time I felt good, the miles were ticking off and I was feeling confident. That was until Saturday, I was going to do the park run and get 5km under my belt but I couldn’t get out of bed, I was too tired. When I attempted to run on the treadmill it felt so hard, it was like my legs didn’t want to work properly and my body felt shattered.

And as the day progressed I felt worse.

Covid-19

Covid Positive

I guess it was only a matter of time before one of us got it. Rich, my mum and I have all been double vaccinated. We’ve also continued wearing masks and sanitising as a precaution to keep Bilbo safe.

On Wednesday Bilbo had a bit of a runny nose and my mum had, had a headache. I felt shattered and had the start of a cold. As per usual we kept an eye on Bilbo’s temperature, he was fine. My symptoms didn’t change, just a sore throat, runny nose and a bit of a headache. I didn’t even think of Covid. On Saturday evening I started to feel a lot worse.

Bilbo had chemo clinic scheduled for Monday, so I booked a PCR Covid-19 test just in case. Infuriatingly in the UK they only want you to get a test if you have the three original symptoms temperature, cough or loss of taste/smell. I didn’t have any of these but ticked a few “Other” boxes to get through the form to get a test. I added my mum and Bilbo on for safe measure.

That night I got a text to say I had tested positive. Thankfully, mum and Bilbo were both negative.

Isolation

So now I’m isolated in our bedroom until the weekend. Rich is delivering food through the window, although as delicious as it looks, I can’t taste a thing. My sense of taste and smell disappeared after I took the test on Sunday. The boys are doing shows for me in the garden. It could be a lot worse.

I am lucky that I haven’t felt too ill. To be honest the symptoms have been consistent with when I’ve had sinusitis. I am just very tired.

The headache I’ve had since Sunday has finally gone and aside from wanting to nap ALOT I’m starting to feel more like myself.

Everyone else has continued to test negative. We are keeping our fingers crossed it stays this way.

Gratitude

Date night – Out Out

The last six months have been tough. After I wrote the last two blogs, I was overwhelmed by messages of support from far and wide. We couldn’t have done any of this without your messages of support, the acts of kindness and your love. Thank you to every single one of you who’ve helped in your own way. We have so much gratitude for the village that has been holding us up over the last 1000+ days.

I also want to shout out to those of you who believed in me and my latest challenge. Thank you for your donations. I won’t let you down, I will complete the 50 miles. I have just put the clock on hold until my body is ready to start ticking off the miles again.

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