“… I know this much is true…”

Hello again.Emma true

As I lie here cradling my firstborn,¬†Emma, after she’s just finished vomiting for the umpteenth time over the last 2 days, I am reminded of when she was born – when she needed me to do everything for her, trusting me to keep her safe and nurtured.

The same love I felt for her back then, almost 35 years ago, surges through me now.

As I hold her head over the toilet, or bucket – if she can’t get to the bathroom in time- and rub her back, I tell her once more how it’s all going to be ok (I truly believe it is!).

It’s amazing how that unconditional mothering instinct takes over – it doesn’t go anywhere, just sits patiently in the wings, waiting until one of your children needs it.

So, we’ve been nestled in a beautiful Welsh hill/mountain since Friday night, escaping from the bombardment of sound penetrating the walls of our home as our next-door neighbours renovate their newly bought flat so that it’s ready for them to rent out. The constant drilling, banging and sanding has been torture for Em and we just had to get her away from it. The lovely Oshi Ow
en
of Felin Fields came to our rescue and gifted us an amazing cottage for the week. It’s had it’s challenges, but it’s been a wonderful gift. Thankyou so much Oshi!

The pain that Emma experiences on a daily basis would bring us mere mortals to our knees, yet she deals with it – between the bouts of vomiting. The pressure in her head is sometime unbearable, and yet she bears it.

She asks me: “How long do I have to put up with this pain mum?” I don’t know what to say… ūüė•

As I began writing this blog she said:

“I’ve got an old song playing in ¬†my head. It goes “…. this much is true…” I could hear it too, but it just wouldn’t materialize – so I googled the lyrics and we listened to Spandau Ballet’s “True” on YouTube.

Something in that song released something for Em and she sobbed.

“…..this is the sound of my soul…”

“… you know this much is true…”

and strangely the reason I felt compelled to write this bog today is somehow wrapped around the words of that song.

“Why do I find it hard to write the next line..oh I want the truth to be said…”

For some time now I have been made aware that people (who may, or may not have donated to Emma’s fund) have been expressing a desire to know where the funding money ¬†that has already been donated has gone.

You may not be aware that one of the many facets of my portfolio is book-keeping, and I have kept meticulous records of every penny that has been donated and how it has helped with Emma’s well-being. If you would like to know where the funds have been spent, please ask me. ¬†I have no problem sharing that information with you.

I had intended to write up a daily record of everything it costs to maintain Emma’s health but you know what, I have more important things to do right now, like holding up my daughter’s head as she vomits again….

Whilst I am writing this blog I would also like to share some good news, and thank all of you who donated towards Emma having a private MRI scan – the Universe took it out of our hands and our family doctor came up with the goods. I did mention in the blog where I asked for your help that I was waiting to hear from her. She didn’t believe the radiologist would agree to scan Emma if she didn’t agree to have chemo, but they did agree – and Emma is booked in for¬†a scan next week!

I totally understand if you would like me to refund your donation towards a private scan – please private message me and I will arrange that, minus the percentage that GoFundMe took out of it as a handling fee.

For those of you who continue to trust me to use your donations for Emma’s well-being, i don’t know what else to say except a heart-felt Thank You! – again!!! We are so grateful for your continued support.

It took me a few goes to write this today as Em is vomiting a LOT! and the pressure in her head is building and becoming more pronounced than usual – we’re just hoping that the Homeopathic Remedies so kindly donated by the lovely Jenny¬†are bringing on a healing crisis.

I posted on Facebook yesterday asking for recommendations for natural remedies for the sickness and a number of people said acupuncture, so we’re looking into a local practitioner here until we can get Emma home.

Once again- Thank You. Our gratitude is immense!

Sue x

We’ll get by with a little help from our friends?

The Latest Update…

On Friday 8th April, 2 months after being told that Emma had 1-2 months left to live, I rang the hospital to speak to her oncology nurse. I asked if it would be possible¬†for Emma to have an MRI to check on the progress or possible regression of the cancer in her brain. The nurse said she would get back to me on Monday 11th April after speaking to Emma’s oncologist.

I received a call from the oncology nurse on Monday as promised. The answer from the oncologist was an emphatic NO!

The nurse then said “but she could come in for an appointment if she wants some treatment”.

Emma had already chosen not to have any more chemo after being told by the same oncologist, who was now offering it to her again, that it was the original chemo that had caused the cancer to migrate to her brain in the first place. Go figure?!

So I asked for some clarification:

“Are you saying that if Emma comes in for chemo she can have a scan?”

The nurse replied:

“Yes”.

I then said, just to make it clear:

“So if she doesn’t have any more treatment, she can’t have any more scans?”

Again, the nurse replied:

“Yes”.

That was the end of the conversation.

I have since rung the same nurse to ask for this information in writing, I am waiting to see if it will materialize.

I am also waiting to speak to our family GP to see if it’s possible to request an MRI through our surgery…

I have already looked at alternatives to check on the progress or regression of the cancer. I spoke to a Thermal Imaging Clinic here in the southwest of England, but their scans don’t work through the skull. ūüė¶

If any of you know of alternative methods of tracking the cancer could you please let me know?

The only other current option is to raise money to pay for a private scan (¬£2,500). I know you have probably already paid into Emma’s fund if you are reading this – please know how grateful we are for every penny that has helped to maintain her presence in our lives, and also for helping us to create the FullSizeRendermemories that we have so far…..

As you will know yourselves, if you have danced with the Big C, or if you know of someone who has (let’s face it, who doesn’t know someone in this day and age?), following an alternative, natural route costs a lot of money.

You will also know that no cure is a cure-all for every type of cancer. So, just like you, we are testing out a few options. As my friend Louisa said in a recent post on Facebook, we are leaving no stone un-turned! This is a very accurate statement.

Who wouldn’t try everything that sounded feasible¬†that already has good success rates, if they thought it might help save their child’s life?

And it all costs money….

So can I please ask, if everyone who reads this blog Рover 5,000 people so far! Рdonates even £1, £5, £10 Рwhatever you can afford Рwe would easily be able to book a scan for Emma so that she can actually see what is happening.

I think this is currently the main incentive for me. Emma needs to actually see what is happening in her brain.

So, dear friends from wherever you live in our global family, please let’s show the system ¬†how Emma can get by with a little more help from you?

You will never know how much we appreciate what Emma has been able to achieve so far with your kindness. I personally, continue to be moved on a daily basis by this – as I know you do too from the many messages we receive…

We’ve already raised over ¬£4,000 since the fund raising began in August 2015. That’s all down to you! Over 6,000 people have read about our campaign (via our GoFundMe page) for raising money to help Emma. That’s also down to you for sharing and caring ūüôā

There is very little of the funding money left after the wonderful break in the forest and paying out for everything Emma needs to make her life just a little bit better each day over the last 8 months.

Can I please ask you now to share our blog so that others can become aware of the differences that have been made, along with lots of useful tips and recipes, and also PLEASE share our funding page.  

We need to find a way of monitoring Emma’s progress without putting her through chemo or radiation therapy again. YOU can help us to do that.

Thankyou, Thankyou, Thankyou!!!!

Sue Fraser (Praying for more wonder-filled days with Emma) Your Prayers Love and Healing are also very much needed and gratefully received!!!