Rubbish Day at Alder Hey

Hi all,

Time for an update from the disastrous day at Alder Hey.

I’m always honest on this blog, not just for friends and family, but for strangers (who continue to message me) following our story, often with sick children… so that they are able to better prepare themselves for the reality of the world of a brain tumour.

So, the day, as told to me by Bev, was a disaster from start to finish. As I couldn’t take them to Liverpool, they awaited patient transport at 7:30am… which didn’t turn up until 11:30! They therfore missed their 9am MRI appointment and lack of communication at the hospital meant everything became delayed and mixed up.

The NHS do a great job, and of course we are so grateful for all the treatment and care Angel has recieved… it just seems like most of the staff are over worked and there is a huge lack of communication.

Anyway, I will start with the bad news:

– Angel did not have a clear MRI scan.

– The cyst on her tumour, has grown and become quite large in size due to fluid surrounding it.

– She will have to go back in to hospital and have this operated on – they will once again drain the fluid from the cyst (good job they kept that cannula in there, eh?

The good news, however:

-Angel is a trooper and remains positive and upbeat the majority of the time

– The cannula is already in her head, so need need for surgery

– The cyst is not as big as it was before proton beam therapy.

We will look at these positives, and hope for the best, as always. They can’t operate on Angel’s tumour as it is too large and intrusive, she will always have an inoperable brain tumour, but they can keep tabs on how it is doing, and in this case, hope to reduce the swelling cysts that have developed to prevent Hydrocephalus.

For those of you that don’t know about Hydrocephalus and shunts, or to put it in more simply terms;

Hydrocephalus is a brain condition that gets its name from the Greek word for water (meaning “hydro”) and head (meaning “cephalus”). It occurs when cerebral spinal fluid (CSF) — the clear, water-like fluid that surrounds and cushions the brain and spinal cord — is unable to drain from the brain. It then pools, causing a backup of fluid in the skull.

Sometimes referred to as “water on the brain,” hydrocephalus can cause babies’ and young children’s heads to swell to accommodate the excess fluid. Older kids, whose skull bones have matured and fused together, experience painful headaches due to increased pressure in the head.

When everything is working normally inside the brain, CSF will flow through narrow passageways called ventricles and exit the brain through a small reservoir at the base of the brain called the cistern. CSF is responsible for delivering nutrients to the brain and taking waste away from sensitive areas, where it will eventually be absorbed into the bloodstream.

If a blockage exists in any of the ventricles, CSF backs up and causes an excess of fluid in the brain, or hydrocephalus. This accumulation of fluid can also happen when the choroid plexus (the area of the brain that produces CSF) is in overdrive or if the fluid fails to be properly absorbed by the bloodstream.

This can then cause the following:

  • headaches
  • nausea/vomiting
  • sleepiness
  • difficulties with balance and motor skills
  • double vision
  • squinting and/or other repetitive eye movements
  • seizures

Changes in personality, loss of new developmental abilities (like speaking or walking), and memory loss may also occur.

I don’t think we need to get in to shunts in this post… as we might not get to that point.

Hopefully when we go to the hospital in January, they’ll be able to drain the cysts and we can move on from there.

Thanks as always for your continued support, means a lot to Angel and Bev, it really does! I’m going back over to visit this week to see her in a dance performance at Blackpool Tower, so will take lots of pics and post!

Also! Massive thanks to Jean and Roy, two strangers Angel met in Sainsbury’s (they have been following her journey while she was in America, and she usually bumps in to them when she’s shopping with uncle Fred) who gave her a tin of roses this morning! How nice. As ever, the kindess of strangers is overwhelming 🙂

Hope to post better news soon, this is just a little step back!

Much love, Elaine x

IMG_5441.JPG

Advertisements

8 thoughts on “Rubbish Day at Alder Hey

  1. So sorry to hear the latest news ,but angel you are a fighter and an inspiration to all others battling this horrible disease your happy positive attitude and the love of your family and your many friends and followers will help you through,keep that big smile on your beautiful face and tell the tumour in your head that you are the winner lots of love prayers and big get well hugs from Tracy des,Jordan and Daniel keep smiling sweetheart

  2. I’m sorry that you didn’t get good news at the hospital appointment sweetheart. You are such a brave, positive girl and a very strongand determined fighter. This is a small step back, but you are going to make many steps forward very soon. Lots of love Angel xxxxxx

  3. Angel you are so brave and an inspiration. Thankyou for keeping us all up to date, as we all think about you often xx

  4. omg so sorry to hear this news just been crying we all love you hun my kids remember you always from primary and miss seeing you at their school now, get well soon angel your and inspiration to us all, take care, much lovexxx

  5. I am sorry that you have had a rubbish time at Alder Hey recently. You are so brave and such a superstar Angel. You are in my thoughts wish you the best in January xx

  6. Thinking of you both Bev and Angel on receiving this bad news. Try to focus on the positives. Angel you are a superstar and an inspiration to us all. Have a good Christmas and I wish better news for you in the new year. X
    Mrs Gorman

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s