The Final Comedown

This is probably the final entry here.

This blog has recorded a short period in time. It has tried to describe as honestly as I can the experience of being a parent of a child with cancer. For better or worse, it defines my life. And I'm sure that I don't always come across as a particularly pleasant or consistent person and probably not even a very good father/husband. But there you go.

It wasn't written for anyone. A vomit in a void. If it was read by people who've never met me. Fine. It was never about saying anything to those who know me. As more people who know me know of it, the more what it says becomes more difficult to write without becoming compromised. So, it's time to stop writing here.

"But nothing in Heaven or Earth
prepared me for this,
THE FINAL COMEDOWN"

Down Down

There are good days and there are bad days. This was one of the latter.

The boy is fine. His recovery is evidenced by his language. When he is well his vocabulary develops a pace. Lots of new words this weekend. Good to witness. When he is ill it is as if his development is suspended and he can go for some time without learning anything new.

Had to do his monthly trachy change today. First time for me to do it for six months. Scans and operations have taken care of the recent ones. He was very good and didn't complain at all. Accepted having his tapes changed in the middle of the day without demur. Made what is always a stressful experience for us much easier than it might otherwise have been.

Not a good day for me. Not sure why. Everything and nothing. A bit of time to myself last night and this morning found me plunging unexpectedly into blackness. Thought these days happened only every six weeks or so. But in reality it is probably more often than that. Christmas Eve was the last time. Hopefully this will pass like the others. Work should make me snap out of it. And caring for the boy will if it doesn't. Can't be easy for the wife when all sensible suggestions are brusquely rejected.

Chemicrazy

Whilst the boy started back on chemo yesterday, today was my first time to administer it. Oddly depressing experience.

Felt rather flat this morning. Ended a conversation with a friend rather abruptly. Not in a mood to engage.

Realised somewhat belatedly that it was chemo restarting. There's nothing like the ritual of putting on gloves, putting a needle on the syringe, watching the oily liquid swirl about in an evil manner as you draw it up. Don't forget to add water to the chemo phial to make sure he gets all of it. Give a big flush to avoid damage to the G tube. Throw it all away in the cytotoxic box without getting any on your skin. The irony of having to avoid getting it on my skin while he ingests it is never lost on me.

Found myself ruffling his hair more than usual. All too conscious that it will soon disappear. He's still recovering from the operation and only just starting to get back to his more normal cheerful self. So to make him ill again seems unfair. We may have been here before but that only helps to a limited extent.

Chemical beats

The boy starts on chemo again today.

He went to see the oncologist yesterday for an assessment ahead of re-starting chemo. He said it was a good trip. He saw a doctor but she did not have a blue hat (i.e. not in theatre gown). But he did see a little ambulance (ambulance car) and a big ambulance. And he went there in a blue car.

Chemo has to be done. But that doesn't make it any more welcome. He will lose his hair. He will start to look waxy. And his risk of chest infections will rise over the next two weeks. Depressing prospect.

His latest game, when I get home, is to make me go to bed. He makes sure I am tucked in. Then he says "na na" (night night), waves and leaves the room. Then he will come back to check on me, putting me back in bed if I have got up. Very sweet.

Bat out of hell

The boy needed oxygen last night, after several days when he was looking stronger. That and chemo due to start again this week provides a cue for a late night angst session.

The boy has had some good days and slept reasonably well for the last few nights. We were therefore surprised and worried when he needed oxygen when he went to sleep last night. A reasonable amount of oxygen at first.

A late night discussion about the reasons turned into a discussion on how his secretions are not completely under control. This turned into a discussion of whether to delay the start of chemo, due at the end of this week. This turned into his chances of getting through three months of chemo without being hospitalised. This turned into the timing of the next scan if he was ill. This turned into what we would do if the scan was not clear. This turned into whether we should ask about his chances of surviving until he was ten years old. This turned into his chances of surviving at all and how we would cope as parents. Which turned us into miserable parents who didn't sleep much.

No matter how much you try to take each day as it comes, sometimes you can't stop yourself thinking ahead.

Child In Time

Got home after a wearing day at work. Found the boy sitting on the bottom stair waiting for me. He was clutching a picture he'd painted which he wanted to give to me. And a hug. Bless.

Bathtime

All the images of bathtime on the adverts are of chubby blonde babies gurgling, giggling and gently splashing in the bath. Mummy holding a fluffy white towel to lift the baby out of the bath and wipe the little blob of foam from baby's cute little button nose. If only!

The boy's not a big fan of baths. Baths mean going to bed. Bed means sleep. Sleep is bad. Ergo baths are bad.

In the evening, he get's a warning that it's bath time soon. He says "no" and holds his hand up in a 'talk to the hand cos the face ain't listening' pose. So I carry a struggling boy up to the bathroom. He is happy to put baby oil in the bath and get soap ready for the bath. But then holds on to the bars of the bathroom cabinet like some kind of political prisoner. I peel his hands off and get him undressed while he tries to kick me whilst lying down. Once undressed he is happy to help get his central line covered and taped up out of the way. But manages to struggle when I put him in the bath. Once in, he remembers that he does like baths after all and happily splashes me or squirts water from his water pistol. He even cleans his teeth without protest.

The protest starts again when I take him out of the bath and start to dry him. They stop when he has his central line unwrapped and his vest put on (to keep the central line and trachy cuff stored out of the way). They start again when he is ready to be taken to his bedroom for his daily trachy tape change.

E v e r y N i g h t.

New Year's Day

A good start to the year. First trip to the park since the operation.

After several days of rainy, stormy weather, New Year's Day was clear, bright and cheerful. Our neighbourhood is always a bit of a noisy place during festivals. The locals seem to compete as to who can buy the loudest fireworks - turns the area into a bit of a war zone. Last night was no exception.

But today was bright and quiet as the locals slept off their hangovers. I had a bit of lie-in and and then we went to the park - for the first time in a month. As has been the case since we returned from hospital, the boy was not at all keen to go outside. But after a brief struggle, some cajoling and a few epithets from me we got him in shoes, hat, gloves and coat and bundled him out of the house.

He was carried/went in the buggy on the way there. Once at the little animal enclosure he was sufficiently keen to see the rabbits and goats to get out and do a lot of walking around. Sometimes he even forgot himself and let go of Mummy's hand to totter after the animals. Was then happy to go to the cafe and get coffee. He watched some boys kicking a ball and wanted to join in. Remarkably, he was happy to kick his own ball and wander about.



A really positive trip out.