Happy Easter

Just wanted to wish everyone that has been following our blog a Happy Easter. Hope you got lots of chocolate. Thank you for following xxx

Picture from whatsonwalsall.co.uk

20130331-091501.jpg

Advertisements

Keeping in touch

Image

Not really had a great deal to write about the situation lately, hence the lack of posts.

I’m definitely struggling to differentiate the good and the more “challenging” things that are going on in our lives at the moment. I can’t seem to focus on anything good, without going back to the bad – it’s always there in the back of my mind. We were looking at prams yesterday and part of me was thinking ‘should we even be buying one yet?’

I’ve started doing another blog to try and write about something that’s not miserable. It purely focuses on nice things and places that we see and go to – kind of a bit of a recommendations blog. I like doing the writing, but I don’t want to be totally depressing all the time. I’m also aware that people probably don’t want to listen to me moaning all the time.

I’m still looking at my website for Bump’s Brain and I’ve written my letter to one of the neurosurgeons to see if she’d do a little Q&A with me.

It’s only 2 and a half weeks until the next scan now. Not really sure what to expect from it. Hopefully to be told the cyst still hasn’t really grown. Had a midwife appointment last week and she said the baby is physically growing well – if anything, he’s probably a bit bigger than average. So my theory is, the bigger he gets and the longer the cyst stays the same sort of size then that has to be good right? We shall see though.

Anyway, that’s all I have to say on the situation at the moment really. Will keep you updated on the website. Hope you all had a good weekend xx

 

photo from: http://www.45cat.com/record/rs022

Website confusion

ImageTrying to decide what information to put on the website is harder than I thought it would be. A lot of people that write about Arachnoid Cysts say that their doctors just tell them it’s “in their head” (excuse the pun). I don’t want the website to have a negative spin to it, as I don’t think it helps anyone. Also, as we’ve not experienced that negativity in the treatment we’ve been receiving, it’s hard to look at it how they do. I don’t doubt that what they write is true, but I want this website to be somewhere people can go for answers. Not a place where people just complain about their doctors. I want people to feel a bit more positive/hopeful when they have visited. The “medical” information that is written, a lot of it is hard to decipher. I don’t want people to be confused.

I don’t know whether it would be easier to try and get in touch with the Neurosurgeon and see if she would do a short email Q&A session with me. I’m sure she gets bombarded with questions though. I’d also like to try and get in touch with the two people I have mentioned in earlier blogs, whose stories were featured in the Daily Mail, and see if they’d be willing to do a Q&A with me too. Then I’d have some first-hand information to include on the site.

This is a more difficult task than I anticipated, but I’m determined to get it going. If it fails, then it fails – at least I will have tried. It’s also helping me feel better, so for selfish reasons as well I’m glad I’m doing it.

 

Picture taken from www.warriorfitness.org

Website update

ImageAs I’ve mentioned on my Facebook and Twitter statuses (is there a word for more than one status – stati?), I have started working on Bump’s Brain’s website. It is nice and bright – the template I used was set up for a cake shop (shocker!! Clearly I’m just drawn to cake). I have pages set up for ‘Home’, About Us, Information, Links to other organisations, Forum, a live ‘chat’ section, Contact Us. Depending on how it takes off, then I may look to see about setting it up as a charity and starting a fundraising section. Then any monies raised would be distributed to various organisations/hospitals etc, but it’s a little too early to look at that yet.

I just really don’t feel like there is enough help out there for people affected by Arachnoid Cysts. That’s not to say the professionals don’t care or offer as much help as possible, the treatment we are receiving has been brilliant. It still does help though to talk with people going through similar. Sometimes you just want a “normal” conversation about it, not a “medical” conversation about it.

Really hope the website does something to help with this. I want it to be user friendly and easy for children and teenagers to use, not just adults.

If anyone has any suggestions of what else should be included, ways to promote my site once it is finished, people you think may want to contribute a story or info to it then please let me know. All help and suggestions will be gratefully received.

In the meantime, thank you again to everyone for your support and kind words – it’s still what’s helping us get through all this.

 

(Picture taken from www.motherboard.vice.com)

Quit looking at my head!!

imageIt was scan day today.

Good news and not so good news. I’ll start with the good – the cyst hasn’t grown and the grey matter of the brain seems to be progressing as normal. The bad news – according to the specialists who have looked at the MRI scan, the corpus callosum (which connects the two parts of the brain) appears to be missing which is a further complication. The professor of the fetal medicine unit thought at the last scan we had that he could see part of it and he wanted to look again today, but Bump has decided to bury his head right into my pelvis and, not satisfied with that, put his arms across his head to make it even more difficult to get a look at where it is. So the professor was unable to have another look, but we have to assume that it’s not there.

For now, we will carry on with the pregnancy as normal (or as normal as it can be). We will have another scan in four weeks and see how the cyst is growing (hopefully it’s not). From 34 weeks they will look at when is best to deliver Bump – weighing up whether is better to deliver him early and work on the cyst, or leave him in for as long as possible. Obviously the later they can deliver him, the better it is.

It looks like we won’t know how he is going to be affected. We will just continue to be monitored and we may not even know how he is going to be affected until he is born.

For now though, I am glad we have not had to have any further discussions about terminations. We’re just hoping the cyst doesn’t decide to go through a rapid growth spurt between now and our next scan.

I have got a delightful sinus infection, have lost my voice and have a water infection. I feel pretty crap so I’m glad Bump has managed to pull something out the bag today. The fact that its more likely we’re going to get to see his little face (he best have chubby cheeks though), is about the best news we could have hoped for today really.

Let’s just wait and see what the next four weeks brings.

Caerphilly tarts, Tinkerbell and love

Image

Weekend is here. I love the weekend. Well, I do when I don’t feel like utter rubbish and when it’s not two days before scan day.

Tinkerbell was unwell all week with a horrible cold and infection in her nose/sinuses. She’s a lot better now, but has very kindly passed it onto me – much to her amusement. Although, yesterday when I came back from work she was crying because she’d hurt herself whilst in her bedroom trying to put on her doctor’s outfit so she could make me feel better. When I don’t feel well she tries to look after me – she strokes my face and puts a blanket over me. She is a little sweetie pie.

I went to her parents evening last night and she had such a glowing report. I was so proud of her. She was described as a little superstar who was just like a sponge wanting to absorb all the information she could. She has an amazing teacher and Tinkerbell loves her, to the point of pretending to be her sometimes – like at Christmas when she pretended to be the teacher and made us all do a Christmas show. My sister, mum and I had to pretend we were on stage singing Mr Sandman whilst Tinkerbell bossed us about.

Today I am having a bit of a pamper morning – a nice pedicure at the spa I go to. Then we’re off into town for present shopping (it’s Mothers Day tomorrow in case anyone has forgotten) and hopefully a big fat piece of cake from the lovely cafe.

My sister is making us all a yummy Mothers Day meal tomorrow – Caerphilly and leek tarts, followed by moussaka and then some rhubarb crumble to top it off. All made from scratch. My sister is the best sister EVER. Despite being even more pregnant than I am, she still looks after us all – even more so with what’s going on.

This weekend we are just going to try and chill out a bit before what could either turn out to be a more positive week or something potentially horrendous.

We have a lot of support around us at the moment – our parents (with my mum helping look after Tinkerbell when she was sick and I had to work), our siblings, the face of the barber shop (it’ll make sense to some), the rest of our families and friends. If this blog wasn’t anonymous I’d name you all. We do appreciate it a lot. Even though we’re sometimes grumpy (that’s me mainly, actually I think that’s just me, the boy doesn’t really do grumpy – so annoying sometimes), I don’t know what we’d do if you weren’t all here. So thank you very much and here’s hoping for some slightly more positive news on Monday.

photo taken from bbcgoodfood.com

My baby is not a pizza.

Image

Today I am angry. Angry in a good way though, if that is possible. Angry in a way that makes me want to do positive things.

This afternoon I asked my partner if he thought Bump was in pain because of his cyst. He said he’d wondered that too. So, as I do with these things, I “Googled” it. I was expecting to find either highly varied answers, or just nothing at all due to the limited information available on arachnoid cysts. What I wasn’t expecting was to find one woman’s honest account of living with an arachnoid cyst. I have seen the website before, but not read the whole thing. Google search though brought up a specific page of the website, it was her writing about what to expect with people who suffer from this. Granted, information like this is helpful. The part I don’t find helpful is telling you to seriously consider an abortion if you find out your unborn baby has one of these cysts and to “make another baby that will be healthy”. This is what led to the title of my blog, when I told my friend what I’d read his response was “yeh cos its dead easy, just order one up like a pizza – one baby please, hold the problems I don’t like those.” I agree with what he says. You don’t get rid of a baby simply because it’s not considered “healthy”. What is classed as “healthy” anyway? Where would you draw the line on this?

After getting myself wound up about what she’d said, I clearly thought I needed to wind myself up even more so I did a search on her. Another page I found just left me speechless – whilst talking about doctors performing surgeries she has said “Please… if you are reading this and you are pregnant love your baby enough to keep it from being tortured in this manner and terminate the pregnancy.”

If we all terminate our pregnancies because of these cysts, then how are research/medicine/surgical procedures meant to advance? How are people meant to become more aware of this condition if we just get rid of anyone who might suffer from it? Or is it babies that have cysts in a certain position/place that we need to get rid of?

Personally, I don’t think she should become a motivational speaker.

Whilst I appreciate I have no understanding about what she goes through, and other people will find what she writes useful, I wonder if she has any understanding about what it is like to have to decide whether your unborn baby gets to live or die.

I don’t want to be told to get rid of my baby if I love it. If we decide that our baby will have some quality of life and want to give him that chance, based on what we’re told by the doctors, does that mean we love our baby less?

I don’t want negativity when having to make the biggest decision of our lives. I want more positive stories, like the ones about Laughlan Dougall and Jade Lucas who still enjoy their lives despite suffering from arachnoid cysts.

This lady has done a lot of work and research for people with arachnoid cysts, I don’t dispute that. Perhaps, though, she should not publish her advice on how to treat unborn babies. Especially not when there are people like Laughlan and Jade around. I’m pretty certain they don’t wish their parents had terminated them.

With this in mind, I have decided to start my own website/foundation. It will be positive and informative and hopefully offer some guidance and comfort to parents of unborn babies who are going through what we are now. It will show stories of people who are living with this. Hopefully it will help with more research into these cysts.

http://www.dailymail.co.uk/health/article-2198751/Arachnoid-Cyst-Schoolboy-Laughlan-Dougall-undergone-40-operations-cure-year-headache.html

http://www.dailymail.co.uk/health/article-2062237/Jade-Lucas-20-amazing-recovery-doctors-operate-life-long-brain-tumour.html