A scary few days

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Wed 7th Sept, 2011

Well, it’s safe to say when I woke up this morning I had absolutely NO IDEA that this afternoon I’d be googling “brain tumors in children”. But let me back up a bit.

For a few months Amy has been complaining that we she couldn’t see very well – both near and far. As kids tend to exagerate we didn’t take too much notice until I discovered that she couldn’t read things that I could read…without my glasses. We then made an appointment with her optomotrist. Since I got glasses when I was 16 I thought it was going to be time for her to get them as well. But the optomotrist could find nothing wrong with her visiion…. even though she could read hardly anything. We were referred to an opthomologist but he also suggested the problem might be pyschological. I didn’t really think so as Amy is very happy at the moment and just loving high school. But I guess you never know.

We couldn’t get in to see an opthomologist until the end of October, way too long when Amy couldn’t see at school and was relying on her friends to help her (even I’d had to do her music homework a few weeks ago). I rang back the optomotrist and he managed to get us in to see another opthomologist. Our appointment was today.

We went along not really expecting much … and certainly not what we found out. After an hour of testing we finally saw the doctor (opthomologist) and received the shocking news. I heard things like “mass in the brain”, “tumor” and “bleeding behind the eye”. She sent Amy out of the room to explain the gravity of the situation. No school until this is sorted out and an URGENT MRI and Neurological appointment. These are both set to happen tomorrow. Which made Amy happy as she had organised a friend from school to sleep over tonight and stay over for the teachers strike tomorrow. The friend obviously won’t be able to stay the day but at least she can spend the night.

Even though I told Amy she has a growth in her brain and needs urgents test done I don’t think she realizes the full implications. But having her friend over will keep her from thinking about things. The first thing I did when I got home was google “brain tumors affecting vision in children”. Something I never, ever thought I’d be doing. I visited sights like www.brainchild.org.au and www.childhoodbraintumor.org. Scary but also comforting in that the outcomes seem okay. I guess we’ll know a lot more tomorrow.

Thursday 8th Sept

What a difference 24 hours can make. After a very bad nights sleep it was a very strange morning as we waited for Amy’s MRI at 12.30pm. Kevin stayed home from work so he could come with us, Amy played with her friend and I pottered around not really sure what do with myself, but unable to sit and relax (which is most unusual for me). Finally it was time to go. We dropped off her friend and arrived for the MRI right on time. Filled in some forms and waited. About 20mins later it was time. I sat in with her. She did great. Not that an MRI is hard because you just have to lie there and stay still. I find the noise quite hypnotic and relaxing. It was hard just sitting there with my own thoughts for 30mins though and I got a little teary again. But then it was over. We then took the scans over to the neurologist. The staff here were very cranky and rude. The neurologist had a quick look at the scan, said he had to wait for the report and the rude staff told us they would call us later to make an appointment. I asked if that would be today and was rudely told it would be when they had seen the report. I left that office rather upset. We decided we’d wait until 4pm and call the opthomologist (whom I’ll now call our doctor) and see if they could find out what was happening.

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Just as I was going to get their phone number I call from the Doctors office. GREAT NEWS!! No mass or tumor in the brain (which kind of explains the rude staff earlier – they obviously knew nothing was there). The office still has to get in touch with the Doctor and will call us back before 5pm. I let her know how much we appreciate being kept informed.

At 4.45pm the phone rings again. The Doc wants to see Amy again tomorrow and rerun the same tests she had on Wed. Then a possible referral up to Westmead Children’s Hospital. The apt isn’t until 4pm and she’s still not allowed to go to school. We don’t really know why but will go with what the Doc says.

We told Mum what was going on today. We didn’t tell her about the mass/tumor because she would worry too much, as it turns out for nothing. So even though we don’t know what we’re dealing with, it’s not a brain tumor and to me that is FANTASTIC news.

FRIDAY 9th Sept

It was a crazy day. Just after 9am I was preparing to go the school for Christy’s fun day when the Doctor called to say she’d made an appointment with another Opthomologist in Sydney… for 11.30am. Luckily we were pretty much ready to walk out the door. We stopped by the school to find Christy to give her bad news we wouldn’t be able to stay. She cried and I felt so bad, but luckily Nan & Pop were able to come a bit later to be with her. Amy and I headed off, driving to Sydney, and through Newtown, which I absolutely hate driving through :-(. But we made it to our appointment with about 10mins to spare.

The Doc ran some more tests but said the results were inconsistent and she couldn’t determine a problem. Next step further testing where a computer will determine what exactly Amy’s brain is seeing. There is., however, the lump behind her eye which is bleeding and has bleed previously. She took some photos of Amy’s eye and is going to discuss with some collegues. There will be treatment required. This is apparently unrelated to the vision problem. The MRI also showed a severe sinus blog – but she didn’t think was affecting her vision either.

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4 hours later (with a break for lunch at the cafe next door), we were on our way home.  There was quite a bit of traffic on the road but it wasn’t too bad. We picked up Country Noodles for dinner and finally arrived home around 6pm!!! It was a LONG day and I feel mentally exhausted.

13 comments

  1. Wendy says:

    How scary, Libby. So hard to keep calm and not freak out and scare Amy too… Hugs and prayers for a quick diagnosis and complete healing.

  2. Ninny says:

    Libby, you’ve been through quite a lot lately, what with your sinus infection and pain, and now this with Amy. So hard to bear the burden of anxiety and not frighten your daughter when you’re so frightened. We went through something similar with my husband. His peripheral vision has been declining, so he had an MRI as well. All we know is an artery (for spinal fluid) is swollen and might have been that way since birth. I sincerely pray that Amy’s diagnosis is soon and that she will be all right! I know you’ll keep us updated!

  3. Paola says:

    My goodness, Libby, what a rollercoaster you’ve all been on! I hope your doctors are able to diagnose Amy and give you some answers soon. Thinking about you all.

  4. Karen says:

    oh, libby, i’m so sorry for amy! my healing thoughts are going your way. and i sure hope it all turns out all right. keep us posted. hugs.

  5. Cass says:

    Just catching up on your blog…wow that must have been so scary for you all!!! I will have to check to see if you have an update but I really hope this has been all sorted out and you know what is going on and Amy is alright! I will say some extra prayers for you and your family!!!

    I recognize that machine with the photo of Amy…I just got Kira’s eyes checked out at an optometrist…not happy with the way things were done and within 2 minutes of seeing her, the doc said she was severely nearsighted. All the equipment was made for adults so I have gotten her a referral to the children’s hospital eye clinic here. More than likely she will need glasses.

    Kira got the photos of her eyes just like Amy did. I hope to find a happy update soon about Amy! Take care!

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