Clinical update and vaccines

Today we went to Addenbrookes for what might be Isaac’s last annual review in paediatrics. 

For the last 16 years, around his birthday, we go in for a day long series of tests. This gives the team a good idea of his baseline, and progression of the disease (this is on top of his usual CF clinic visits, which we have on average, maybe 10 a year). The annual review typically includes:

Full bloods

Blood glucose testing (testing for CF related diabetes)

Chest X-ray

Liver and abdomen ultrasound

Bone density tests

Full lung function tests/spirometry 

Port flush

Cough swabs/sputum samples for the lab

Exercise tolerance tests

Psychology review

Dietician review

CF nurse review

Doctor review

Physio review

Pharmaceutical review

Due to COVID (numbers at Addenbrookes are coming down at last, 12 in ICU and 50 more on wards currently) today was a stripped back version. No ultrasound, blood glucose or bone density scans - instead they will review the blood results first, and run these tests later should there be any concerns. 

Today was pretty much my favourite day all month, which seems mad, as annual reviews of yesteryears have always exhausted us, mentally and physically. 

I cannot tell you how much love and gratitude we have for our whole MDT (multi disciplinary team), who go above and beyond for us every time, and even in these most difficult times, take the time to listen, consider and create a plan that works for Isaac and our family. 

I’ve been encouraging Isaac to take the lead in talking to his team for a while now, with limited success. But today he really stepped up, asking me only to review his prescription list. He spoke politely to everyone - beginning to participate in his health care plan. The only downside was that due to his weak and damaged veins, from years of needles, it took four nurses and five stabs to get bloods. He never complains. 

When Isaac was maybe 4 or 5, we had a few years where I dreaded both CF clinic and annual reviews to my core. Not only was the news always mixed, and often disheartening, his behaviour in clinic could be terrible. I was usually on my own, but sometimes with a little Anouk too, and we were confined to a single room for hours due to cross infection risks. All for discussions he did not understand and tests that he did not want. He once threw an orange at our consultants head (still sorry, Richard). Those were the days of sticker charts, rewards for good behaviour, and me silently screaming in my head until it throbbed (OK, I may still do that occasionally). Once I reversed the car pretty hard into a huge concrete post, stressed and trying to escape the damn hospital car park. Little Isaac cuddled me, and, our roles reversed, had to tell me that everything was going to be OK, as I sobbed snottily. 

Today, we laughed, we talked more in a day than we have all week, we joked about, we discussed our hopes for the future, and even agreed on what he could do better, treatment wise. I know I always say this, and believe me, he can be a right pain in the arse too, but always, he is my absolute hero. 

Test results will come in over the next few weeks. For now, no treatment changes; although his coughing is increasing again his lung function is stable, so we await lab results, since he’s only been off IVs for a month. 

Next up.... COVID vaccine as he turns 16 on Monday! That is my advance warning of some baby to teenager picture spam to come ❤️

Have a great day, keep well and wishing you all a vaccine day in the near future too x 

Wish you were here

In January Isaac had two weeks of extra oral antibiotics and anti-fungals, followed by two weeks of IV antibiotics to treat a CF exacerbation. Just a week later, he is coughing more again. Today he felt sick and hasn’t eaten. He looks pale and worn out, despite sleeping all day. He hasn’t left the house in weeks, apart from for hospital. He needs sun. He needs to see people. He needs a break.

Hell, I miss our friends, our families. Spontaneity, the changing of air, aiming for a destination, having a plan.... not fearing hospital trips. 

Things have got to get better, right? 

We were so lucky, having all that freedom. 

Keep well x 

Yesterday’s sky and today’s walk in the hale. 

5000 THANK YOU’S

Before lockdown, I pledged to walk 500km over the month of January for sponsorship in aid of the Cystic Fibrosis Trust. Unfortunately, lockdown here in the U.K, home schooling, and then Isaac becoming less well again, and subsequently needing two weeks of intravenous antibiotics meant that this was not possible, however hard I tried to make it happen. Mostly, this was due to time... an average of 17km a day would take me around three hours. Gutted, I wrote that I would need to push back the challenge until after lockdown (whenever that might be). 

However, the lovely Claire White suggested instead make this a group challenge, and suddenly flocks of family and friends volunteered to join, walking separately, but in heart, very much together..... from as far away as Mexico, New Zealand, Poland and the Netherlands! And so the group challenge was born; to collectively walk 1000km over the month. I set a new target of 300km for my part, only part way through the month, so many people had volunteered, we upped the group ante to 2000km..... and what happened? 

My total: 300km

Group total: 2650km!!!

Total raised for this walking challenge and our fundraising at Cambridge University Press: £5110 ❤️

To read more, or sponsor us still, please click here....and to everyone who walked, donated, thought of us, thank so much. 

Special thanks to Claire, my Sarah, Camila, Anna, my sister Jo, my lovely Mum, Vanessa, Sam, Yasemin, Jo T, Steph, Jess, Hannah, Debbie, Chloe, Kay, Erika, Mieke, Jon & Flynn, Dilys, Gavin, Lemon, Kasia, Fran, Sarah OD, Tilly & Heather x (so sorry if I missed anyone!). 

It means the world, really, and 5000 thank you’s doesn’t cover it x