Angel's Battle

01/03/2025

19/05/2023

Hey everyone. I've been having real trouble with this page where it wouldn't post any of my updates so I started updating my main page instead with updates of Angel. I've been told today that the page ahould be working normally again so I wanted to try and share with you that Angel has now completed her chemotherapy treatment, she has rung the bell and we just received the amazing news that her end of chemo scan is all stable! Here's a few pics of the last few months

31/08/2022

Wednesday 31st August
MRI results day

It's the day I've been dreading. After all the stress that I have felt over the past few months with the discrepancies between the scan results, I was scared walking in to that room and hearing a definitive answer.
Thankfully, we got the best news possible! Angel's scans have been reported on by everyone and the results are that everything looks amazing!! The scans are stable and showing no changes at all!! Mate I felt a weight lift off of me when I heard this.
Unfortunately, Angel's blood results are showing very low platelet counts so she can't restart her chemotherapy today but they will retest in a week and take it from there.

25/08/2022

Thursday 25th August

Today we had Angel's specialist orthoptics appointment at Epsom hospital. They were amazing, they did all the tests as soon as we got there and then we was straight in to see the consultant with no hanging around. We got the results there and then and I'm happy to say that they found no abnormalities at all with Angel's eyes. We have to go back again in 3 months to retest but everything is looking good.

Of course, the downside to this is that the visual disturbances Angel has been having is definitely focial seizures :/ we have the neurology appointment next month to discuss it all and next week we finally get the results of Angel's most recent MRI.

05/08/2022

Friday 5th August

Hi guys. I just wanted to give you a quick update. Angel and I have both been pretty unwell (we both got Covid) and although luckily Angel didn't have many symptoms, her white blood count and neutrophils dropped really low so they had to stop this month of Angel's Chemotherapy 1 day after it started until they picked back up again. Luckily they did her counts again this week and her levels are within normal range again so the Chemo has been able to restart.

On Wednesday we were back at the Marsden for Angel's quarterly MRI but I've told them that this time I don't want the results until they have been reported on properly by the relevant people because I can't go through what we went through before. They have said they should have the full report in a couple of weeks so we are due to go back on the 24th August to get all of the results.

Also, I received our usual letter outlining what happened at our last review but under the diagnosis section, a whole load of new mutations were added and we hadn't been told anything about it. I assumed that King's college hospital had finished their examinations of Angel's tumour that they extracted and that was what they had found but they never sent us the report like they were supposed too so I questioned the Marsden on it while we were there. It turns out that with the new mutations they have found, they can do targeted therapy on the tumour if it were to regrow so they actually have a plan. They also discovered that this was not genetic so my other children do not need to be taken in for scans and tests which is a bonus.

Now we just have the long wait for the results again which is the worst part but luckily we are going on holiday next week with the family so that should distract us for atleast part of it.

19/07/2022

Tuesday 19th July

After posting in here, I decided to sit down and write and email to Angel's CNS nurse to try and get some answers prior to Angel's next meeting tomorrow. I got a response back this morning and I don't know how I feel about the answers I got if I'm honest. So they say it takes months for swelling etc, ok I'll exclude the first 3 scans...that doesn't then explain why, on the exact same scan fron May we was told it was clear and then in June we were told it wasn't! Nothing about that scan had changed within that month. From what I can tell, the consultant simply guessed it was clear before actually getting the radiologist report which is completely disgusting!
Also, it was made clear that they made a conscious decision to exclude Angel and place it all on me without giving me the full details. Ugh I don't even know what I'm feeling, I just know I'm not happy at all.

15/07/2022

Friday 15th July

Honestly, I have no words! I'm so emotional right now but I am also so proud of my beautiful Angel. She won the child of sussex award for courage and I could not stop crying. She did amazingly and she deserves every second of this happiness.

13/07/2022

Wednesday 13th July

I decided today to contact young lives versus cancer (formally clic sargent) just to express my concerns and to see what they could do to help.
Lyn decided to speak to Angel's CNS nurse to get the full picture I'm even more confused now.
So In February Angel had her op where we were told not only did they fully resect the tumour but they took more then was necessary because it looked aggressive. The day after her op, Angel had a scan and they once again said absolutely everything was fine and clear. 2 weeks Later Angel had another scan and once again they said everything looked great and all clear. When Angel went in for her mask fitting, she had another scan, once again all clear. In May Angel had another scan of which we were told once again, all clear.
Then suddenly in June they are saying actually the tumour was never fully resected and it can be seen on every scan!
How on earth did a specifically trained team of people manage to miss it in not only 1 scan but in 4 different scans?!
And then to top it off, they have completely forgotten Angel's next round of chemotherapy is due to start on the 20th of July and they haven't arranged for her review or for her to get her chemo!! All of it takes time to arrange so now I'm rushing around chasing them trying to get it sorted!! With everything that's going on, how on earth do they think it's acceptable to just forget about an entire round of chemo?!
Raging isn't the word for what I am feeling right now.

12/07/2022

Tuesday 12th July.

I know it's been a long time since my last post, I promise there has been a good reason.

On the 25th of May we were at the hospital for Angel chemotherapy review and the results of her MRI. We got the great news that everything looked positive and that there was nothing bad to report from her MRI imaging. We were over the moon.

Angel had been struggling a lot with her mental health. She couldn't be away from me. She couldn't sleep in her own bed or even go to school. Since we got the good news, every day Angel has slowly got better and better. She's now back in her own room, she's managed nearly 2 full weeks at school and she's sleeping at night again!

On the 22nd June, we went back to the Royal Marsden for Angel's next chemotherapy review and to pick up her second round of chemotherapy under the new regime. While we were there, they asked Angel to leave the room with her CNS nurse. This is when they told me they was wrong. The radiology team looked at Angel's MRI after we left in May and they have picked up some abnormalities......they aren't sure whether it's from the old tumour and it wasnt fully resected or whether it's a new tumour. Honestly my heart sunk. How can they tell us everything was great to then sn**ch it all away from us less then a month later!!

Angel is now getting referred back to the neuro team at King's and a opthalmology team in Epsom. Hearing the news was devastating for me but honestly what was worse was the fact they made Angel leave the room. They didn't want to tell Angel they made a mistake but now they have put me in a awful position. Do I continue to let her believe that there's no negative news? I feel like a terrible parent because the hospital are basically making me lie to her! But her mental has improved so much and I don't want her to lose that!! I have been battling with myself every single day because I don't know what to do and what's best for Angel! I hate that the hospital have done this.

I haven't been able to write anything about the struggles because the group was open and she (or her siblings/friends) could go on to the group and see all the posts so I've been struggling with it all on my own. Today I decided to change the settings so that only members can see the post. I felt like you guys have been there and helped us so much already and we just went silent so I had to give an explanation. Not only that but I know a lot of you also have unfortunately had to deal with these types of battles too and honestly, I just need some advise because I really don't know what to do....

03/06/2022

Friday 3rd June

We're back from our holiday and what an amazing time it was! We all had such an amazing time and it was definitely needed (what wasn't needed was the stone that come flying at my windscreen at 70+ miles per hour from the opposite side of the road which caused a crack right across the right hand side on our way home!!).
I hope everyone had as much fun this half term as we did, It's back to normality for us now.