The Ups and Downs of Post-Treatment

A strange and very long week for all but it's another week gone by and nothing horrendous has happened. Although Leo is quite tired and full of cold, he's enjoyed school this week, albeit he spends all day in the art room and was fantastic with the doctors and nurses on Wednesday.

On Wednesday, we had his monthly follow-up with his paed oncologist. This is the one doctor who Leo would always play up in front of during his treatment and until the turn of the new year. This is purely because we only ever saw him when there were tough decisions or bad news to be shared and digested. This doctor is softy-spoken, very kind and very detailed in his approach to sharing information with us about Leo. He totally understands that he is also treating PJ and I and our rational and irrational fears, especially now that Leo has finished treatment.

So what have we learned this week? Well, a few things were purely a reminder of what we'd forgetten we already knew...such as the fact that Leo is really susceptible to right eye and sinus infections, just like the one he had at the end of January / beginning of February. The penny dropped when his doctor reminded us of this, as we had been told this by his radiotherapy consultant last summer when we met with him, but of course, we're given so much information and so many details during the course of diagnosis and treatment, that things get lost or forgotten along the way.

I asked if we'd always have to go via our GP for treatment when he next gets sick with his sinuses and eye, and reminded the doctor that the GP had told us there was nothing wrong and if anything, it was all just 'normal' childhood illnesses and that I shouldn't be 'so paranoid'.

Thankfully, his oncologist was sympathetic and said most GPs never see children with cancer, never mind someone with the cancer Leo had. Plus actually, each time he gets this infection, because let's not kid ourselves, he will get sick with another one, we should always be seen by his oncology doctor at the hospital. Leo will most usually have to be treated aggressively with IV antibiotics for a day or two, followed by a further week of oral drugs. So thank goodness his doc appreciates the issue parents and children have with the odd GP who just doesn't 'get' it!

The second thing discussed in detail was relapse. Detail in terms of what we can and should be looking out for. Sadly, there's not much can be done if or when a relapse happens as we've always known care would be purely palliative. But heaven forbid, the big C decides to make a comeback, it's likely to occur in his lungs / chest. However what we learned this time around is that as parents we cannot look out for any obvious signs this has happened or starting to happen. Doctors will only know in the quarterly chest x-rays, the next of which is next month. In a way, this is a good thing as it means we don't have to be constantly evaluating any symptoms Leo is showing. On the other hand, you live in the shadow of having no control and never knowing what's happening inside our son's body.

The other major symptom which will be very obvious is if his eye starts to pop out of the socket again. We've seen it before and so will almost certainly recognise the symptoms. Luckily (?) he has had the maximum and most aggressive radiotherapy that he can have in this area in order to try to provide local control of the tumour so fingers crossed it has done the job.

And then here's the surprising bit of our meeting from Wednesday; the third way he could relapse is via his blood / bone marrow. And so as parents, if Leo is very poorly, lying on the sofa or not able to get out of bed for 10 days or more, so really very sick indeed, then we need to seek further help. Simple blood tests and bone marrow aspirates will then show whether he's just got the flu or he has relapsed.

We feel happier knowing all these details even though we'd rather not have Leo ever bee in this position. But thankfully, Leo is smiling and laughing alot. He's living life and enjoying nursery school. He even remembered events and things which happened before we moved to Spain today, which is lovely to hear him talking about things such as our cat we had back in 2007 when he was only just 2 years of age. It's nice to know he does not dwell on his cancer probably because whilst he knows he was sick, it does not resonate with him as much as it does for you and us. It's also nice that he is feels secure and really rather settled in the UK; he does not talk with sadness about Spain and whether we're going to return. That makes us happy.

And so to tomorrow...Leo and I are off to Uxbridge, which is where I grew up when we returned from the USA as a young child. The reason we're going is that some school friends of that time in my life, have gotten on and organised an awesome line-up for a live music fundraiser. Many do not even know our family but Leo's story has reached them and Matt Tombs, an old school friend who I've not seen or spoken with for 17 years, has been manically organising the evening which is going to raise some much needed cash for Clic Sargent. The current economic climate has significantly affected Clic's funds and so we're thankful there are people like Matt on this planet.

Photos and updates of the night will be available here ASAP.

Thanks again for your supportive messages this week and please know we very much appreciate your prayers and thoughts for Leo and all the other people affected by cancer.

Thank you.

H xxx

Reprieve

The best way to describe we're feeling is how my Auntie Lily described the news that Leo's scan results showed no changes from the previous one; it's a reprieve.

We know that if the cancer is going to grow again then it wouldn't wait for a scan to show itself and also we know that if they'd been able to operate and surgically remove the bit left over in his head post-treatment, then perhaps we wouldn't be so nervous day-to-day. Don't get me wrong, we're not living our lives thinking he's going to relapse but there's always that risk. We live with those thoughts from time to time but a day never goes by without wondering if life has something different in store for Leo soon. If he complains of a head ache or if he says his neck hurts, then it's perfectly normal for us to worry perhaps more so than if he'd never had cancer.

I wanted to thank you for your support during the past weeks also. We could not get through this time without the emails, texts, cards and phone calls so thank you. We're also more than aware that we're not the only ones going through this. Other families will have had that awful news today, and another family tomorrow; in fact, in the UK, 10 families every day have their world fall apart due to childhood cancer. Whether their child has just been diagnosed, just finished treatment or whether they've relapsed, our hearts and thoughts are with all those families also.

So we'll take this reprieve, thank you very much. We're seeing Leo's oncologist tomorrow so must write out our questions this afternoon so we cover all our concerns and queries. And then the next test is the chest X-ray in 6 weeks time.

Right... off to school for Leo now where we mainly plays in the art room...we'll make an artist of him yet!!

'Unchanged'

Happy and relieved to report that we finally have the results of Leo's second post-treatment MRI scan - it was 'unchanged' (doctor speak for still the same) in comparison to the scan from mid-November.

Short but sweet. Nothing more to say. Phew!