A Crazy Catch Up

Ok, I know, this post is so long over due... but honestly, it's just gotten crazy busy here!

There has been so much stuff happening.

First, I know, I owe some results.

We had a long and in depth conversation with the Oncologists last Thursday.

The MRI scans showed that there was no growth in the cancer, which is good, it means that the cancer is being held at bay, at least for now, by the chemo. It also means that her pain is just not being controlled by the copious amounts of drugs that we are already throwing at her.

We have been working closely with the pain team and her drugs have been increased a lot over the last few weeks, and we are inching toward an improvement, but there is still a ways to go.

We have also discovered that she has yet another para-esophageal hernia. For the non medical amongst us... here is a simple version.

She had an operation when she was 12 months old to form a tightened sphincter at the top of her esophagus. This is called a "Fundoplication". This operation nearly killed her. She spent many weeks on life support after the operation with severe complications. When she was 2.5 years old she developed her first para-esophageal hernia. A small part of her stomach was pushed through the fundoplication into her esophagus. She had to have surgery and a redo of the fundoplication to repair the damage. Now, it seems that she has gone and done it again.

So, this is most likely adding to her pain, but it also definitely explains her feeding problems and the fact that she is having problems tolerating meals. So, now, instead of doing three meals a day plus snacks and drinks, we are giving her smaller, higher calorie feeds about every two hours or so to try and compensate for it and to not cause her any additional pain. The hernia is sliding, so it doesn't always affect her feeds, just sometimes... the problem is that we can't tell until she's been fed, so we are instead opting on the side of caution.

Clearly our little princess likes to keep us on our toes!

So yes, although we got some decent answers from the MRI, it also showed there was no reduction in the primary tumor.

We are now basically at the point where there is nothing left for us to do but to 'wait and see'. The recommendation of the oncologists is that we wait out this course of chemo. We are currently in week 27 and we have treatment for 39 weeks, then up to 3 weeks of 'waiting' before we start serial scanning.

Our Oncologist was pretty clear in that anything big we want to do, any plans we are making or anything else we are dreaming about doing with her, we should do it as soon as possible, before we start serial scanning.

Once we finish chemo all bets are off. They have made it pretty clear that we have more than an 80% chance of her relapsing quickly. Once she relapses we need to decide if we want to continue with a second line treatment.

I am not going to go into all the details of that now, we will cross that bridge later... but suffice it to say that between her pre-existing cancer causing genetic condition, the aggressiveness of this cancer and everything else, her odds are not high at all. In the grand scheme of things, when you take everything into account, it's quite possibly down to single figures.

So really we haven't gotten a whole lot of new information, more just a reiteration of what we already knew, and the confirmation that now more than ever we need to make the most of every single precious moment we have.

I posted recently about the Reaching Out With Love fundraising drive that the school my oldest daughter attends was planning to run to help raise funds for Nicola.

The other thing that has happened in the past week was that there was someone who was so very against the fundraising that they felt it necessary to complain to both the Catholic Education Office and the Office of Fair Trading about the fundraising.

Everything was cancelled.

To be honest, when I first found out about it, I felt like it was a very direct attack on my family, like we were not worthy of the help.

It has been something that we have heard a lot since Nicola's birth. She doesn't tick the right boxes so we don't get anything. She doesn't have a condition that people have heard of, so she doesn't need anything. Our circumstances are different to others, so we don't deserve anything.

It was another slap in the never ending series.

The school has since been granted permission from the Catholic Education Office and for a special appeal sanction from the Office of Fair Trading so they can continue the fundraising.

I am incredibly grateful for the time and effort that these people have put into this, into helping my precious daughter, and I am incredibly grateful that they have not been put off by the bitter actions of one person.

Yet again, I have am both blessed and humbled by the community of which I am lucky enough to be part of.

On Sunday we were lucky enough to attend a Family Fun Day hosted by Camp Quality.

Camp Quality is a charity that deals with families of children with cancer. They do some wonderful things, including taking us all away for a 'holiday' over Easter, which the girls loved. But yesterday was just a bit of fun and down time, and a chance for us to meet some new families who are on this journey with us.

I took a few photos of the girls, not up to my usual standards because I was only using my phone, but I wanted to share these two with you.

We have joked several times recently about getting Nicola a little wig to wear, just for fun... clearly purple is the way to go! :D The sparkly silver hat doesn't hurt either! LOL!

And finally... all of my beautiful butterflies...