Happy Birthday Aalish - Saturday, 18th November.
"I'm not gorgeous anymore, am I Mum?" She'll always be gorgeous and she'll always be our little princess.
For the first phase of treatment she is undergoing intense Chemotherapy every 10 days which involves being in hospital. She has just completed her 7th round and is due to have one more before they do some tests. Here are a few pictures of her journey over the last 7 weeks.
Aalish already for the match today. Let's hope she gets a wave from her hero today. Won't be long before she leads the Reds out with Conor at Wembley!
13th March 2016 - Back to hospital (SCH)
Aalish's Beads of Courage. Each bead represents something she has done or had to undergo since being diagnosed. TeamAalish.
Aalish was due to be mascot tomorrow at Wembley for the Johnstone's Paint Trophy Final of Barnsley v Oxford Utd. She was going to be the first person out on the pitch with her hero and Captain Conor Hourihane as they led the Barnsley Squad onto the Wembley Pitch. As it stands now I am having to announce that Aalish won't be able to be there. She is still in hospital. Barnsley Fc are aware of this and have been so supportive over the last week or so giving her every opportunity to make it down there. I do know that we will be in close contact with the club and at some point Aalish will get the chance to play her special role again soon...... So for the time being Aalish has decided to bring Wembley to Ward M3 and from her bed support Conor and Barnsley Fc. #COMEONYOUREDS# # TEAMAALISH#
11th April 2016........ Cuddles with Big Sis........homelife.
Back from Magic Sleep. Now sitting in KFC having lunch.
29th April 2016......... For our Princess. Purple is the colour from now on
13th May 2016........Time to have some teeth out. So Magic Sleep number 5.Definitely having 6 out with 2 teeth having White Caps/Fillings. All of this is to help prevent infection while in High Dose....Just something else for our girl to have go through.
Things again for the repeat Harvest haven't quite gone according to plan. Even after 4 more painful injections of Gcsf the cells still don't want to appear......so overnight in hospital tonight so another G-csf (granulocyte-colony stimulating factor) can be given at 6 and a further injection at 2am tomorrow morning with the hope that these might boost the cells so they can be harvested tomorrow and put with the other cells ready for High Dose.
Zip wire and slide fun...... Click photos (below) for link to videos.
We will however be heading back tomorrow as her platelets and neutrophils will be re-checked, but it's that time again and her first test is now due after her High Dose Chemo, this being her MRI Scan. It will be about 2 hrs long and like last time she is planning to do it awake.❤ This is due to start at 2pm.
Above, Weston Park Hospital, Sheffield
After Radiotherapy, Aalish is entitled to treatment called Differentiation Therapy and Immunotherapy. This treatment is designed to help her body kill off any remaining tumour cells that are small and may still be lingering into non-aggressive mature cells. The treatment is given orally over a period of six months. Alongside this Aalish is also offered Immunotherapy. This treatment is to recognise any Neuroblastoma cells in the future and hopefully kill them. To have this though I had to agree to Aalish being randomised as there are now two forms of treatment.....Differentiation Therapy and Immunotherapy or Differentiation Therapy, Immunotherapy and an additional drug called Aldesleukin.(This boosts the Immune System) At this point I realised that this part of her treatment was going to be intense again and not quite as straightforward as first thought! The Immunotherapy that is given carries quite a few side effects, some of which are scary and severe to say the least, but the most common one being pain. This is controlled with the use of Morphine. Once this is under control then usually things proceed as normal.
After reading and understanding everything that was said I am keeping everything crossed that Aalish gets the first option rather than the second. I really don't like the sound of that...at all.
So as it stands Aalish had her first round of Radiotherapy this morning, so 1 down 13 to go.
The following day was injection day. The injection was given in the afternoon followed by her paracetamol an hour after...however by the time the injection kicked in the paracetamol had worn off and before we knew it her temp was over 40 degrees....she was also shaking. She was given some Piriton but her paracetamol wasn't due for hours. By the time her next dose was given the most it did was bring her temp down to 38.8 and so her temp continued to rise again.
It wasn't until the next dose of paracetamol was given that she started to improve....nearly 12 hours after the injection was given! This happened again on injection day.I can honestly say that this was the worst and scariest night of my life...I felt useless....I couldn't help my baby and I felt entirely lonely. I then had a thought....I asked if the injection could be given earlier and an hour after her morning dose of paracetamol. This was agreed and so, on her injection day this was done. OMG...WHAT A DIFFERENCE. Aalish still got her temp but it occurred just before her next paracetamol dose was due. The Paracetamol was administered and within an hour her temp was down to a more normal reading and she remained comfortable for the evening. This happened again throughout her remaining injection days and up to now, my theory has worked (Watch this space).
Aalish is now back on her oral medicine for two weeks before we start the injections and antibody again next month. The 10 days in question left us both extremely exhausted and personally speaking has left me wondering how I ever got through it.....but I did....Aalish did.