Aalish Naylor - 18 November 2009 - 10 June 2018

Dodworth, Barnsley, England


From The Barnsley Chronicle 27th July, 2018
Barnsley Chronicle - June 15th, 2018.
Barnsley Chronicle - March 2018 - A winner's story.

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.

March 2016

This is the story of a football loving girl from Barnsley in South Yorkshire (supports Barnsley FC), in the north of England. Her name is Aalish Naylor. Aalish was diagnosed with Neuroblastoma on the 7th of January in 2016.
11th March 2016
The story has been compiled from frequent entries on the Facebook page, Aalish's Journey. We take up the story from March the 11th, 2016. At this stage, Aalish is in Sheffield Children's Hospital following a little blip with her previous chemotherapy session. She is now getting ready for the last chemo in this phase which is to start tomorrow (Friday, 12th).

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.

March 12th

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)

17th MarchAalish is still in hospital after her unplanned visit on Sunday. She was dehydrated so she has been on fluids. On Tuesday morning she had a temperature, so they started her on antibiotics. They also gave her blood and platelets to help boost her up. She's looking a lot brighter and is due to start her last chemo of this block tomorrow.
22nd March, 2016 Aalish is still in hospital. Her last chemo of this block went ahead as planned on Friday. On Saturday she spiked a temperature and it was a high one. Over the weekend her temperature struggled to stabilise so more antibiotics were given. After taking bloods it was discovered that Aalish had an infection in her line/blood stream. Her antibiotics have been changed to try to kill this off. Her temperature is still being closely monitored, but seems to be a little more stabilised. Today she also underwent her first test of the six tests she is having done again. While having the Ultrasound Scan today they noticed some irritation in her lower tummy area. For this, her tummy needs rest, so all foods and fluids will be administered via her lines rather than by mouth. All of these things apparently are common after Chemo, but it doesn't make it any easier to see this in your child. Her body has taken 7 weeks of complete hammer and needs time to recover. So more days ahead of antibiotics, platelets, tests and possibly blood.
27th March, 2016 - Day 14 and still in hospital. Aalish is still having temperatures and still on tummy rest. When the paracetamol kicks in she feels quite bright as you can see here, so she is in the process of completing some Lego. In between paracetamol she is also having various antibiotics to try and target this temperature. Aalish did manage to complete 8 rounds of Chemo as planned and her little body has took some hammer. No Chemo planned for a bit so relief is an understatement!! Time to try and get our girl back up. 
27th March - Surprise visitor called into SCH to see the Children on M3......Superbike Champion James Toseland. Seems a bit surreal considering where he lives! What a lovely guy too. So genuine and caring and lifted the spirits of the children. Truly amazing
28th March - Aalish with her stand of IV Machines......Different world when you see this really!
29th MarchAalish's Birthday Present to Jack. Very Special moment 
Aalish went for her 3rd routine test as planned. This test was her MRI Scan. Her consultant asked her a few weeks ago if she would like to do it awake and Aalish agreed she would.....What can I say about my girl.....Considering she's never had a chance to see the scanner until today and she's having the temps, she laid there for 2 HOURS completely still and never flinched. The noise never bothered her and she laid and watched her DVD. At the end, the team today were amazed at how well she did and said that they'd never had a child awake for such a long scan! I am so proud of what my baby girl has accomplished today. She's a superstar.

March 2016

April 2016

Aalish's Beads of Courage. Each bead represents something she has done or had to undergo since being diagnosed. TeamAalish.

2nd April 2016

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# 

3rd April 2016....... Not quite Wembley, but got the chance to escape to the park to feed the ducks. First time outside in 3 weeks. Sun was beautiful. Even had a bit of ice cream. 
4th April 2016....... Although Aalish couldn't make it to Wembley we did keep upto date with the score line. A special thankyou goes out to one Barnsley Fan who managed to get word round that Aalish wasn't going to be there and so on the 6th minute of the match the fans clapped in her honor for a minute. To those fans who clapped we could never thankyou enough. That was a very special moment for Aalish and one we will never forget. The result of course put the icing on the cake......Conor is her hero....maybe he with some of the team could bring that cup to our girl.....We'll see.
5th April 2016....... Aalish had a special visitor today. Little Alfie, who walked out with Alfie Mason at Wembley popped into see her to tell her to Get Well Soon and brought her in these lovely gifts.....A Signed Programme from all the Barnsley Fc Team, A Jewellery Body Art Set and a Get Well Card. Thank you Alfie and hope to see you again soon.
7th April 2016........ Aalish's hero and the Captain of Barnsley Fc.....who she was due to be walking out with on Sunday at Wembley....and that magnificent trophy.....They're back in Barnsley.
11th April 2016..... After 4 weeks in hospital, Aalish has finally been allowed HOME!!!!. Here she is with her home pump so we can keep her fluid intake up to where she needs to be. She's looking so much better and other than a few tests this week, her consultant has prescribed her home life with loads of normality and NO MORE CHEMO for the time being. My girl has been amazing and so strong. It's been a tough four weeks with plenty of tears shed, but for the time being, My Princess is back.

11th April 2016........  Cuddles with Big Sis........homelife.

13th April 2016......... Back to Sheffield Children's Hospital.......Test No. 14th April, test No. 5.
14th April 2016

Back from Magic Sleep. Now sitting in KFC having lunch.

April 15th 2016...... Well the day finally arrived and Conor made it to our house to visit Aalish, and just look at my little ladies smile! He brought her loads of little goodies and spoke about the possibility (fingers crossed) of her walking out with him at Oakwell as a mascot, even if it's short notice. Thank you to Conor and Barnsley FC for all their support at this time. They're making a little girl very happy and if she's happy then so are we.
17th April 2016...... Aalish wanted to go out for Sunday Lunch today.....She even did the Cookie Jar Challenge......Special family time and her giggles have been a long time coming.
18th April....... Aalish popped down to the Barnsley FC Clubshop today and what should be there but the Johnstone's Paint Trophy Final Cup......She finally met that wonderful piece of Silverware.
19th April 2016..... Aalish didn't make it down to Wembley...... Well hopefully tonight she's got the chance to be mascot and walk out with Conor at Oakwell for their game against Peterborough. To all you Barnsley Fc Fans, look out for our princess tonight.!!
20th April 2016...... Well.......She did it. Such a proud moment last night watching our girl walk the Reds out with her hero Conor. The lads were brilliant with Aalish and welcomed her with open arms.......and to top it all off they WON! 
21st April 2016..... One of Aalish's wishes in between treatment was to have a day at Blackpool Pleasure Beach, so yesterday we headed off in the glorious sunshine.....It was so nice to experience a bit of normality and to see Aalish Smiling....She even ventured onto the Avalanche for a ride. 
April 22nd...... The results of Aalish's tests have just been finalised. The Ultrasound Scan has shown that the lump on her kidney is now even smaller. Her MBIG (Metaiodobenzylguanidine (bone scan) has shown that all the hotspots including the lump on her eyelid have gone and to top it all off, her Bone Marrow test has come back All clear of disease.....As we reach this part of her journey these results again are what we've been longing to hear. The lump is of a size where the doctors feel she can be operated on safely and it can be removed...This is planned for Friday 29th April. On Monday she is due to be having Stem Cells harvested from her blood ready for when she has High Dose Chemo later. Aalish still knows her journey isn't over yet and also what she's got ahead of her but our little princess is fighting this and we are so proud to call her our Daughter/Sister/Granddaughter. Love you baby, so much.
23rd April, 2016.......   Children's Hospital - Top up of blood ready for Monday
25th April...... Stem Cell Harvest.
26th April 2016........ Things didn't quite go according to plan yesterday. There weren't enough cells in Aalish's blood to do the harvest. This meant an overnight in hospital so an extra injection could be given at midnight to boost the cells. Although the injections are pretty painful, Aalish coped very well and in total has had 6, plus she'll be having another at some point today. Today we've got the cells we needed so harvesting has begun. Blood is taken out of her line and into a machine which splits her blood into different bags.....Cells and Plasma. Blood is then put back into her from the machine via a Cannula that's in her arm. As far as Friday goes, Aalish won't be having surgery just yet. Her doctor would like her Platelets to be higher than what they are, so she may or may not have it. They may go straight to High Dose Chemo towards the end of May. Keep going Aalish. Our brave girl. So proud.
27th April 2016......         Stem cell harvest, day 2
28th April 2016....... Popped down to Barnsley FC today. While we were there, they brought a parcel out to Aalish that had been sent in from a fan who lives in Bournemouth, who has seen and heard all about Aalish's Journey. It's been created and hand painted over 8 hours. This is truly wonderful......Something which is very close to her heart and of course includes her hero too. Thank you to Nathan Bush, from Aalish and her family.

29th April 2016.........    For our Princess. Purple is the colour from now on

April photos 2016


1st May 2016.... For Princess Aalish and all the other Princesses that Aalish has met on M3 Ward.
8th May 2016.........  My beautiful girl has just done the hardest thing a girl could ever probably do. She took the plunge to shave the rest of her hair off. She cried.....I cried and Courtney cried. Watching this as her Mum broke my heart. Her beautiful hair gone and with no control to stop it. At the end she hugged me and said... 'I'm not gorgeous anymore'. In our eyes she'll always be gorgeous and she'll always be our little princess.
11th May 2016........ Time for the talk about next stage of treatment.....High Dose Chemo.

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.

16th May 2016........ Harvest Day again......Take 2. Cuddles too with Dad before he goes to work.

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. 

18th May 2016......  Aalish's harvest eventually went ahead yesterday. Unfortunately after 5 attempts of trying to put a cannula into her arms, her veins wouldn't take, so they used her Broviac Line (aka central vanous catheter) to take and give blood. Doing it this way we were told that the cell collection may not be very good. As it stands Aalish's Consultant has just confirmed that the harvest went better than expected and they collected enough to go with the other cells. This means that the next phase of treatment is planned to go ahead and this will mean Aalish will be admitted into hospital Sunday evening for 'High Dose Chemotherapy' and will have to be here for a minimum of about 4 weeks. This we know is going to be very tough for us and especially for our girl, but her attitude is amazing....'I don't care Mum aslong as I get better'. So we are hoping to make the next four days special before her visit to what we call 'Our second home'.
22nd May 2016.......  Well the time has come and Aalish has just checked into her Room.......the room that will be her home for the next 5 weeks or so. Her High Dose Chemo starts tomorrow which she will be on for 2 hours, every 6 hours for 16 doses followed by a short infusion of another Chemo on day 5. Personally speaking it's a very scary time going into the unknown again. She's been so well after being so ill and it feels in someway that we're just starting our journey. Her attitude towards this is still the same and thoroughly amazing. We are so proud of you Princess and we love you so much. Let's do it.
26th May 2016.........  Aalish's Countdown Calendar to help her through High Dose and her heading home
29th May 2016..........  At the end of week one Aalish has undertaken 17 doses of chemo in 5 days. The beginning of the week she struggled with being away from home and had some meltdowns but as usual picked herself up and got on with it. Through all this she's played and even spent time in the classroom at the hospital. The doctors have been to see her this morning and given her the news that she can go home till Tuesday when she will have her stem cells back. As you can imagine her face lit up and there were smiles all round.....She's got her footy shirt and ready to watch the big game later!. COYR. Do your best and win again for our little lady. 
31st May 2016.......Aalish went back into hospital last night. She came home for her two days leave and although being a bit sicky and feeling tired has enjoyed herself especially yesterday when her close friend.....Sophia..... came to play. Today she has had her first two bags of stem cells back. Other than her room having a very strong smell of sweetcorn she coped with it well. Tomorrow she will have the remaining three bags of stem cells and then it will be a case of watch and wait. Her bloods will drop even more and at some point, temperatures will appear, Tpn will be on and antibiotics be required. All in all Aalish is getting on with it as she always does and is a true inspiration. 

May 2016

June 2016

8th June 2016............ It's now been a week since Aalish had her Stem Cells back. As expected towards the end of last week her blood counts dropped and the effects of the High Dose Chemos hit her. Her sickness carried on throughout the week on and off and by the weekend she was complaining of excruitiating pain in her throat. To help with the pain the doctors administered Morphine. Along with her throat some ulcers have appeared and a mouth virus too. Also towards the end of last week she had a temperature. Antibiotics were administered as usual and her temp went. Last night her temp spiked again and so with medicine for her mouth, she is also back on the antibiotics. On Monday, seeing our little girl crying out in so much pain with her throat was the hardest thing to witness since obviously her diagnosis and tears were well and truly flowing.....the feeling of being able to do nothing hurt incredibly.... Today she has been able to drink a little for the first time since her throat became sore and as ever our girl is smiling at painfree times. 6 months in and Aalish is truly one in a million....our amazing, beautiful, bravest little princess. 
10th June 2016....... It's been 6 months since Aalish got diagnosed with Neuroblastoma....a childhood cancer. Over the months we have taken numerous photos along the way of her ups and downs and we thought we'd put a few of them together and make a video of her journey so far. Click the pic below for link to video.
12 June........  Some balloons arrived this afternoon on the Ward.....So special when something small brings a smile to our little girls face when things are rough and tough.
13th June......... Well Aalish has been in hospital now for exactly 3 weeks and considering she had 17 doses of extremely high chemo, she doesn't look too bad today....she's up and painting with her big sis.
21st June........ While Aalish has been in hospital two very special pressies arrived at home on Sunday. One is a framed photo of pictures from when Barnsley beat Millwall in the PlayOff Final and the other is a clock with pictures from when Barnsley beat Oxford Utd in the Johnstones Paint Trophy Final. What's also special is that her name is in the centre of both as a special collectors edition. Aalish would like to thank Carrie for going to all the trouble to have these made. They are very very special as they represent both of the Wembley visits Aalish was unable to go. We would also like to thank Carrie too and to see Aalish's face light up when she saw them is priceless.
24th June......... Well....after 4 weeks Aalish has finally made it home after her High Dose Chemo Treatment. This was the one part of her treatment plan that I was dreading and in some ways struggled with. She went into this extremely well and it was hard knowing that this Chemo was going to send her rock bottom. Looking back over the 4 weeks Aalish has gone through this unbelievably well. During the middle of her treatment Aalish suffered from a severe sore throat.....so much so that she needed morphine as pain relief as it brought her to tears. This was hard to watch. Towards the end of the 4 weeks she got RhinoVirus which is what we know as a Common Cold, and  that a nasty cough which did cause her a few problems. Now she's home we have to keep on top of her fluid intake making sure she keeps hydrated and also with her food intake. One thing is for sure... I'm glad this is done and finished now. She will have a repeat of all the tests again over the next few weeks and there is still a possibility she may still have surgery. Radiotherapy is next on the cards so as usual, Aalish keeps going and her determination never fails. Well done Aals. You are our true hero.
24 June 2016...... Took Aalish to Cannon Hall Farm today. Amongst the Rabbits Pigs, Cows, Goats, Sheep and Chickens, it was nice to see her smiling and having some outdoor fun

Zip wire and slide fun...... Click photos (below) for link to videos.

26th June 2016........Had to bring Aalish in to hospital earlier today as she spiked a temperature. She's had some blood taken to coulture to see if anything grows. As it stands she's not neutropenic, her red blood cells are good, the only thing she needs is platelets, which she is now having. The doctor has checked her over and can't seem to find anything that stands out. Her throat, chest and ears all appear fine. After the platelets finish, we'll have to wait an hour. If no temp arrives we can go home.
29th June 2016........ Aalish was back ar SCH today for her bloods re-checking. Her platelets have read a good count considering that they usually drop within 3 days of having them. Her Neutrophils however have dropped again so she is border line neutropenic. Her red blood count is behaving itself well at the moment. 
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.
30th June 2016........ Blood Re-Check and MRI Scan.
30th June 2016......... Bloods re-checked and MRI done.....and our little lady did it again. 2 1/2 hours lying still. So proud of her again. She looks like a little astronaut going into space when she lies inside that machine. Completely covered over with alsorts of padding from head to legs. Well done baby.

June 2016

July 2016

6th July 2016........ Blood and Platelet top up.....plus Test No.2 MIBG....(Bone Scan) 
6th July 2016.......  Here's Aalish about to start her Bone Scan. It consists of a Full Body, Head, Tummy and Legs.The machine comes down very close to her face and it also twists around her body too.The scans take between 10 and 25 mins depending on the area and Aalish must remain completely still throughout.....Pretty good going for a 6 year old.
7th July 2016..... Test No.3 Ultrasound on Tummy and Test No.4 Heart Ultrasound.
24th July 2016....... A few weeks ago Aalish's consultant gave her the go ahead to take a small holiday away from everything. So with the help from the hospital and Ben's Den ( a beautiful 3bed luxury Static Caravan) we headed off to Golden Sands Haven Park in Mablethorpe.The weather was scorching and Aalish had us running around all over the place...2 trips to Fantasy Island, a day on the beach and the amusements on the park itself. It was amazing and emotional to see Aalish enjoying some normality and seeing life as it should be for a 6 year old.....we even welcomed a new addition to the family...

Above, Weston Park Hospital, Sheffield

27th July 2016......  Yesterday Aalish needed a top up of blood so off we went to SCH. Afterwards we headed over to Weston Park Hospital, across the road. This hospital cares for adult patients who also have Cancer 😢, but this is also where some children have treatment. This is where Aalish will be having her Radiotherapy Treatment which is due to start next month. Here she was shown the machine which does the treatment and she met some of the team who will be there. On the 3rd August she is due to be having Radiotherapy Planning. Part of the planning involves her having 3 very small dot tattoos across her tummy. This is where the beam will go when her treatment begins. Aalish will have to remain still only for a matter of minutes which I know she can easily do, especially after her 2 previous MRIs...as usual Aalish took it all in her stride. She was asked if she would like to ask any questions, but as ever, she replied no. As it stands now she's fine with it all, but on the day I could expect some tears of nervousness and unsureness. When this was mentioned yesterday, she was told that she had no choice but to get on with it and it was something that had to be done! This is very much a true statement..Aalish is only 6 and yes she has no choice....she knows that...I know that. However it doesn't take away the fact that our daughter shouldn't have to be doing it. It hurts sometimes and I will always have questions that I know can never be answered...but hey ho here we are and this is how it is. Here she is having a lay under the machine 

July 2016

August 2016

28th July......  Test No.5 Magic Sleep for Bone Marrow. One very emotional little girl 
3rd August........ Blood count check. Then Weston Park for CT Scan and Tattoos.
10th August 2016.........  Well Aalish has now done her Radiotherapy Planning and she is now due to start on Monday. Her Beanbag is all ready to go with the shape of her body moulded in to it and covered in her favourite stickers. She's had another practice run today under the machine...even making me have a go too....So let's do it Princess and Kickass!
15th August 2016.......  On Friday we went to Sheffield Children's Hospital to see Aalish's Consultant regarding her test results after her High Dose and for the talk regarding her next phase of treatment after Radiotherapy. With regards to her UltraSounds, MBIG Scan (bone scan), MRI and Bone Marrow, it brings tears to my eyes to say that our girl really is 'Our SuperHero'!! Her MRI and Ultrasound have shown the tumour has shrunk even more and is of a very small consistency and her MBIG Scan and Bone Marrow have come back again showing clear and negative signs of disease. These results, 8 months into her treatment are truly amazing and just what our ears wanted to hear! 
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.
16th August 2016.......  Aalish's SuperShoes arrived today....she absolutely adores them and they've certainly put another smile on her face
23rd August 2016......Day 7 of Radiotherapy and Aalish taking it all in her stride.

Think my girls got what it takes to go on 'The Voice Uk Kids' show.

Click the pic for link to video.

August 2016

September 2016

1st September 2016........ Last day today of Radiotherapy for my little lady and she rings this bell. 🔔🕭 Her treatment is still not over and she's still got another 6 months to go when we start the last bit of treatment later in September. I am so so proud of what she has achieved in this horrible year and I never ever imagined I would be on this journey with my 6 year old daughter and no matter what is thrown her way, she keeps smiling. She is my world, my everything and she's certainly 'KickingAss' at the moment.
1st September 2016.......These wonderfull nurses have taken care of my little lady over the last couple of weeks at Weston Park Hospital.
6th September 2016....... Just dropped my little lady off at school for her first afternoon in 9 months!!!. To start with she is only doing afternoons, so it doesn't get too much. It was amazing to see her friends welcome her back with open arms and cheer when she arrived. A very special moment for me too. (They see her as Aalish and not a little girl who has Cancer!!) It was like she'd never been away....now I'm missing her
8th September 2016....... Magic Sleep...Bone Marrow Test. Never gets any easier!!

September 2016

October 2016

1st October 2016...... Well...it's time for an update again. Aalish has now finished all her tests and on Monday she will be starting the next phase of her treatment.....Immunotherapy. This treatment involves 5 days of an injection called Aldesleukin or IL2 as it's also known, and then a 10 day infusion of an antibody with the IL2 injection given on alternate days. At the end of the 10 days Aalish will be then on some oral medicine again for a few weeks and then the process is repeated again. This is due to continue for about 6 months. As with everything she has to go through on this journey, it can carry side effects, some more severe than others, so until we begin we really don't know.... Yet again for me, anxiety has kicked it. I'm scared and unsure and I hate going into the unknown....all I know is as Aalish goes into her 10 month of treatment I must keep going. We've come along way on this journey and she takes it all in her stride. I know she is slightly scared of what is approaching...certainly with the injections...but she keeps battling on. Although this is a long phase and one that could be very intense too, it is also due to be her last course of treatment so too everyone who knows Aalish personally and to those who are on here following her journey, could I ask you all to get behind her, support her and guide her through ( what her consultant said) the homeward stretch? Let's do it Aals. My true warrior.
4 October 2016...... They always say surprises come when you least expect it....well right now I'm shocked and so overwhelmed at the same time!!! Aalish is back in today having her second injection and while we've been waiting we've seen her consultant. During our conversation we spoke about her most recent test results...being her Bone Scan and Ultrasound. These were repeated again at the end of August, even though they were done beginning of July and for the first time she's said those letters....NED. These letters stand for NO EVIDENCE OF DISEASE!!!! Her bones and bone marrow are clear and her tumour is smaller and there are no signs of activity!!!! All these tests will obviously be repeated again at the end of this phase of treatment, but to be told this about our little lady is one MASSIVE and one HUGE accomplishment as we were also told that they didn't think Aalish would make it this far in her treatment! Her tests back in January before treatment started, showed that her Cancer was very very aggressive!! It really does put things into prospective about life...Our girl is a WARRIOR.....she's 'KICKED ASS ' and she's told Neuroblastoma who's BOSS.
9th October 2016......   Aalish finished her first 5 injections on Friday. She coped with them pretty well. No discomfort when the needle went in to her legs. After about 4 hours after the injection was given she did get a temperature however...she also complained of being cold. The temperatures were quite high and they certainly tested us...which was a bit nerve wracking but we got through them. Tomorrow she starts the third part of this cycle, this being the antibody. She will be started on Morphine in the morning for about 2 hours and then the antibody infusion will begin which is continuous over 10 days. Depending on her pain, the Morphine will be increased or decreased. The injection is due again on Tuesday and will then be given every other day alongside the antibody, so we have quite a week ahead and for this part, Aalish will be in Sheffield Children's Hospital. Yet again we are going into the unknown, but as usual, Aalish stays determined and with our news from earlier on in the week, we are keeping focused as we continue on our journey. 


23rd October 2016....... Just a quick update..Aalish finished her 10day antibody infusion on Thursday. As you are aware she also continued having the IL2 (Aldesleukin)  injection every other day alongside the antibody infusion. I never ever thought I would be saying what I'm about to say, but this has to have been the hardest bit of her treatment so far....and there's another 5 more to go!!! On day one of the infusion, things were going smoothly. Within 2 hours Aalish's pain went from 0 to 10 in 5mins. She was complaining of chronic back pain and her screams will probably haunt me for as long as I live. Along with the Morphine she was given an extra Morphine Bolus and within a few minutes she became more comfortable.....although being completely out of it and asleep. 

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. 

November 2016

18th November 2016.......  Happy 7th Birthday to the bravest, gorgeous and most inspirational little girl that I'm so proud to call my daughter. To say you've had one hell of a year would be a complete understatement and this time last year we had no idea what was in store. Although you are in hospital I hope your birthday dreams come true and you have a great day....Happy Birthday again Princess...I love you so much 🎂🍰🎉
21st November 2016........Aalish is now on day 8 of her antibody infusion for the second cycle. Her pain levels this time have been considerably better than the 1st cycle, however her temperatures are proving to be more of a problem. The IL2 (Aldesleukin) injection automatically gives her a temp about 4 hours after...the antibody also can. On Wednesday of last week she started with a cough and so they are giving her regular chest X-rays and blood cultures along with Oxygen to help with her Sats. Part of me is very angry. A few weeks ago Jack was taken into the doctors with a nasty cough on the off chance he could be seen. He was told to come back in TWO WEEKS!!!! The care and support from them has been abysmal and it wasn't much better when we went for the flu jab...(which is to protect Aalish and it was also on Aalish's Consultants say so!!!). I always thought GPs were there to protect and prevent!!!!!!! There she is lying in hospital with this extra burden now. She's due to have her last injection on Wednesday and come off the infusion on Thursday.

November 2016

December 2016

15th December 2016 ............ UPDATE....Aalish has now started cycle 3 of her Immunotherapy Treatment. On Monday of this week her IL2 Injections began again. Aswell as the IL2 (Aldesleukin) she has also had 2 of her tests....Ultrasound and Bone Marrow Aspirate. On Monday of next week she is due to start her 10-day antibody infusion again with IL2 alongside....which obviously means this will be over Christmas Weekend. We are keeping our fingers and toes crossed that her pain levels will be comfortable so her Christmas won't be a complete blur...Let's hope Santa has been watching over our princess and brings her some extra special pressies...