6. May, 2018

May 2018

Not to sure where to start really. 

The decrease in red cells tied in with a scheduled visit to our consultant at The Royal Marsden, this was a great opportunity to ask some questions and get some real answers. 

This wasn't like the other visits to the RM, this had a different feel about it, we knew something wasn't right regarding Amelia's blood counts and although QEQM had scoped the bloods we still didn't have answers. 

QEQM had also put Amelia on folic acid, which we were told was for her iron levels, it wasn't, her folic acid levels were low - makes sense typing it, but when your led to believe this is for iron levels and not folic acid by a medical professional you tend to go with it. Our consultant said stop the folic acid with immediate effect! This had the potential to reduce the effectiveness of a chemo.

Anger set in and more questions from us. We were also told that QEQM did not have the capability of viewing the blood to a level that would detect adnormal cells.

I think it's fair to say that alarm bells were starting to ring in my head, I didn't want to jump to conclusions but this was extremley hard not too. 

Our doctor could sense and see our apprehension, so a full scan of Amelia's blood would be done.

I can't describe the feeling, but it felt very similar to June 2016, severity was less but the gut wrenching space in the pit of my stomach was there - I said right at the start of the blog I can't explain the overwhelming sense of feeling that hits you and I probably will never be able to explain it, it's just something that occurs through trauma? 

It was a long weekend waiting for the results to come through, I was actully very comfortable regarding the results, that'show I felt, as Amelia had no signs of fatigue or pinched brusing, but there was that small chance.

We had planned a full on weekend as we had a friends birthday celebrations and we tried to put it to the back of our minds, but I often looked at Tracyann that weekend and I could tell she was struggling.

The call from our consultant came Monday afternoon at 5pm - she phoned Tracyann's phone whilst Tracyann was on the way home from work.

Bloods were clear - it's a virus.

Tracyann came straight home as I was waiting (children at Nanny Pat's), we cried, the relief washed through me and my eyes actually hurt.

It was obviously the news we wanted but the emotion was just raw.


So what were the next steps in order to get Amelia's red cells back to a normal level (within treatment levels). Amelia required some antibiotics on a monthly basis until the levels are sustained at where they should be.

So Amelia and Tracyann were once again at QEQM Rainbow Ward on Wednesday.

The day went to plan, Amelia was hooked up for 4 hours. The end of the day didn't go to plan, basically Amelia was accessed the previous day by the community nurses and had used and access to AMelia's portacath that could not be removed by the nurses at the QEQM!? Pardon? This has never been an issue before? There are various types of these and now QEQM were saying that it's against policy for them to remove it?

To add fuel to the fire, the doctor had to Google Amelia's anti-biotic to understand what the hell it was.

With this combination Amelia and Tracyann were not in a good place and I was working, frustrated and dissapointed were an understatement. 

To add to this Thursday morning at 3am Amelia was sick and had a big headache - the anti-biotics! Not once were we told about side effects from the doctors, after I had read up on the meds the side effects were clear. 

Amelia fully recovered by Friday afternoon but a nightmare week TBH.

So, at the moment, Amelia is good, she looks well, she has good energy levels and treatment continues, these events we just have to ride right?

164 days until treatment ends and 80 days until we go on holiday.

Much love and thank you for your continuous support.

Us x