retinoblastoma

Bye Bye Birmingham

You might want to get a cup of tea for this blog. It’s been a busy week! It started out with a trip to the Drs because Daisy had a temperature and even more puking than usual. We knew we were due at Birmingham Children’s Hospital for one of her retinoblastoma check ups on Friday and wanted to be sure she was well enough to go. Another ear infection. I am unsure why an ear infection causes more puking but there you go.

Anyway we got the all clear for the big trek down to Brum. It has been a bit of a second home for us for the past two and half years. Initially we had to go every 2-3 weeks but thankfully for the past year it’s just been every 3 months.

Travelling anywhere with Daisy is quite a mission. Because she is tube fed, we need to make sure we have all the equipment with us, and her milk (which comes in those handy, easy to carry thirty at a time, 200ml plastic bottles). These aren’t things you can go out and buy if you forget them. Then of course there are the fifty million outfit changes in case she throws up on herself. Add Huxley into the mix and our luggage increases tenfold. The wee man loves to bring up his milk too, not quite in the spectacular style of Daisy, but it requires a fair few outfit changes. That and all the bottles and sterilising equipment (yes I know breast is best but we couldn’t manage it and my sanity is intact) and suddenly there is more luggage than people.

The Tidy Tyrant had to work so Glamorous Grammy and Patient Pops stepped up to help me transport us all down to Birmingham. There I am packing all the stuff, making sure the babies are fed and trying desperately to be on time for once, when The Tidy Tyrant asks me if I am going to have time to tidy up before I leave. Eh, NO! I wouldn’t mind but all the ‘mess’ was coming with me!

One of the pleasurable parts of our trips to Birmingham has been meeting up with friends and family. This time we met up with Dr Kate, who is a friend who happens to work in A&E at the Children’s Hospital. You’ve probably seen her on the TV programme Inside Birmingham Children’s Hospital. She’s going to kill me for mentioning it on my blog. She is pretty inspirational; she has dwarfism and she hasn’t let it be a barrier to what she wants to achieve. She always has some wise words for me. Last time she pointed out to me that for Daisy to grow out of her projectile vomiting she had to actually grow and that I needed to find a way to get more calories into her. Seems obvious I know that now!

We have to be at the hospital at 8am on check up days. How long we are there depends where Daisy is on the theatre list. The list is in age order and as she is now one of the oldest she was last on the list this time. Thankfully Daisy couldn’t give a monkeys when she hasn’t been fed for over 15 hours so that’s one less stress. They put drops in her eyes to dilate her pupils. She hates this; I assume they must sting. All the children generally go kicking and screaming into the room to get the eye drops. Weirdly the eye drops stink of wee and it’s a smell that lingers on them all day.

We consider ourselves very lucky with Daisy. Her retinoblastoma was caught by chance at 11 days old and she has only had one tumour. She only needed 2 out of 6 potential rounds of chemo and then some laser treatment. She hasn’t had any treatment for nearly two years. It’s still nerve wracking though; you worry that it might rear its ugly head again. I put it out of my mind in between visits and on check up days I try not to worry about it, at least until she goes to theatre.

The worst part of the day is watching her go under anaesthetic. I have lost count of the number of anaesthetics Daisy has had. It must be between 40 and 50 by now. The first time I went with her and watched them put my baby to sleep I cried. I said I never wanted to do it again. But I have to. I always want to be the last person she sees when she goes to sleep. The first time is most definitely the worst but it certainly doesn’t get very much easier. You have to put the life of your most precious bundle in the hands of someone else. Then I sit and wait. Anxiously hoping it will be good news.

The Birmingham team are brilliant. They come straight out and tell you the news before Daisy has even woken from her anaesthetic. This time we got some pretty awesome news. The surgeon has decided that since she has gone nearly two years without treatment, they want to discharge her from Birmingham Children’s Hospital back to Glasgow Children’s Hospital for her check ups. I appreciate that this is excellent news, but it does make me nervous. Birmingham Children’s Hospital is one of only two centres for retinoblastoma in the UK. She has been so well looked after there, and I feel safe in the hands of these specialists. I did raise my fears. I was told that they haven’t seen a new tumour in an unaffected eye after the age of 2 in twenty years in the UK. I do like a statistic. Although thinking about it, we seem to defy statistics in this family. But I know they wouldn’t be discharging her unless they were confident about it. It was Yorkhill Children’s Hospital that found the tumour in the first place so I am pleased that’s where we’ll be going back to.

I am not a natural worrier; I tend not to over think things. That’s when stress gets the better of you I reckon. However I do tend to worry more about stuff than I ever used to. I suppose I was one of those ‘it’ll never happen to me’ types. Since Daisy, and now Huxley, I have had the realisation that really anything can happen.

Retinoblastoma is so rare, about 50 cases a year in the UK, that you don’t tend to meet other people with it. It is nice to meet up with the other families when we go to Birmingham. It’s really supportive. This time we met Laurel, who has had a really rough time with retinoblastoma; she had one of her eyes removed just last month and they are desperately trying to save what little sight she has left in her other eye. It was a reprieve for her this time as there was no further damage to her eye. I have everything crossed for Laurel. She deserves a break.

We also met a family who were in Birmingham for the first time. Their little girl is only 18 months old and it looks like she is going to have one eye removed and start chemo to stop the tumours in the other eye. They were an amazing family. They weren’t too scared by the prospect of this; they just wanted their little girl to be ok. Just as we come towards the end of our retinoblastoma journey (hopefully) someone else is just beginning. It really makes you sit back and take stock. It took me right back to the beginning of our journey with Daisy. I guess your first instinct when you are told your baby has cancer is that you just want them to live. You can get yourself through whatever else as long as they live.  Success rates for retinoblastoma are high; they say if your child has to have a cancer then this would be the one to have. Many people don’t find comfort in that, as why should any child have to suffer cancer? And I get that. But I do find comfort in it. If she had to have a cancer I am so, so, so glad it was one that can be successfully cured. I am the kind of person who always thinks about how much worse it could be and that helps me deal with whatever is thrown at us. I guess it’s my coping mechanism.

While we waited for The Tidy Tyrant to join us in Birmingham, we had a wander around the shops. I’m not much of a shopper though. Which is a shame really, given that the Bullring would probably be someone else’s idea of a great day out. Especially when they have their hands on their hubby’s credit card. The only thing I bought was a new hoodie for Daisy and that’s only because she had a poo explosion through her vest, trousers, t-shirt and hoodie. Not easy to clean up in a public toilet. I stood there wondering where the hell to start. Needless to say the vest went straight in the bin. Makes a change from cleaning up projectile vomit though.

We stayed in Birmingham for the weekend as The Tidy Tyrant, his friend Scott and I did the Birmingham Half Marathon yesterday. I signed us up for this when I was pregnant thinking it would be a good to raise some money for Birmingham Children’s Hospital and a great way to lose the baby weight. This was when I was being particularly ambitious about managing to deliver Huxley naturally. That went to pot pretty quickly and I ended up with an emergency c-section again. I am thus feeling pretty proud at managing to complete the half marathon just 4 months after having Huxley, and managing to do it in 1:54:39. They say self-praise is no praise but what the hell. Whoever designed a half marathon with a hill from miles 11 to 12 needs to have a word with themselves. I’m glad I didn’t know about the hill until I hit it!

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At the last count, we’ve managed to raise over £2000 for Birmingham Children’s Hospital. It feels great to know that as we come to the end of our time there (fingers crossed), we have been able to give something back. The care Daisy received there has been excellent. We have been luckier than most and we don’t take that for granted. If you would like to sponsor us, every penny is gratefully received.

 

Here’s the link to our JustGiving page:

So Birmingham, you are a fabulous city and you have been good to us, but I really hope that all our future visits are purely for pleasure!

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