Part 4-Things were easier in the beginning

Multi-disciplinary meeting was attended by Angel,Bev,oncology nurse specialist,clinical psychologist,educational psychologist and Dr Thorp who led the meeting.

Angel was struggling at school with fatigue, memory problems and mood swings such that she now attends school on a part time basis.Medically Angel is doing well, in terms of her non-medical ongoing issues they are as follows , she continues to be troubled by profound fatigue, this impacts on the amount of school that she is able to attend , and if she does a full day at school then she only manages a couple of hours the following day along with fatigue comes poor concentration and diffulties in lessons.

Angel describes sporadic poor memory. She loses things easily, has episode of mixed up alphabet letters.She has also found that she has had missed letters out in writing words.Bev feels her spellings and writing has gone backwards.

She is troubled by mood swings, she loses  her temper at least everyday. In terms of school she has decided to drop the options Science Drama and History and to only do Music  Science and Art Textiles,  creative subjects Angel manages better with.

A neuropsychology testing which was done in December 2015 noted that her verbal memory scored significantly lower than her other score which may explain her difficulty at school. She has also undergone a dyslexia screen in school which all scores seemed to be below average. However, it was felt important to point out that this is a screening rather than a diagnostic test and the results will vary from day to day depending on the level of fatigue.Although this may highlight some dyslexia traits, this does not mean that Angel has dyslexia. However it may mean that the coping strategies that would normally be used to overcome a low verbal memory score may not be appropriate for Angel.

Dr Thorp noted that it had been agreed with school that she will enter the educational diversity program and receive home schooling in the September for Maths and English whilst attending school for her options. We have agreed that this is a good compromise certainly in the short term but Angel should be kept under review and monitored as things improve for her she continue re integration into normal school if possible. It is also important that we continue to highlight Angels many positive attributes she has been through so much in the past couple of years with her health but continues to present as a bright lucid sociable and resilient teenager. It is the aim that Angel has the appropriate level of support but also normality to enable her to achieve her ambitions and fulfil her potential.

Bev expressed her opinions in the meeting and said health is her main concern, if she does well in school it is a bonus for Angel and for her not to worry about exams ect just do what she is capable of doing.

We were even informed that with everything that is going on with Angel they may not be able to given the reasons why, which left her feeling  shocked and as for the meeting what a waste of time as Dr Thorp was happy with what we had in plan for Angel when she returned to school to commence year9.

Advertisements

Part 3-It’s harder now than it was in the beginning

After trying to sort out education for Angel,and to get her some normality with her attending school, and the many issues she has due to the brain tumour, and informing her team and school of the changes we had made,everyone was happy  with a reduced timetable for Angel in school, you would kind of feel that things would run more smoothly for her, but this was not the case.

The day after seeing Dr Did Bev received a phone call from Dr Thorp at Clatterbridge Cancer Centre, she was concerned that Angel was only attending school on a part time basis and Angel needs to fulfil her maximum potential, so a multi-disciplinary meeting was arranged for 16th August.

Bev was absolutely furious, this was in the middle of August so plans for a return visit for her check up at UFPTI was postponed, she physical dreading telling Angel as she knew exactly how she would respond, especially with not  getting back to Jax  second year on the run.

When Angel returned from school she was in tears being told about the meeting ,which then turned into anger with her saying ‘as long as my brain tumour is stable and my hormones are ok that should be all that matters, does it matter if I don’t do well at school  or my brain does not function properly,all that should be there main concern is my brain tumour stays stable and I can learn to live with all the other things that go on ( if any of you know Angel really well you would know a lot of swears words will be in with her comments) Bev totally agreesd with how Angel was feeling,  and was going to express her feelings at the meeting.

Part 2 – it’s harder now than it was in the beginning

First of all apologies for not updating the blog more sooner, things have been full on for Angel over the last few months,lots of appointments and her medical issues having a daily effect on her.

As with the previous post, this is the update of the results of tests etc.

Angels thyroid function checked recently showed free T4 of 10.5 and a TSH of 0.31mU/L, which is normal, her energy levels are variable but sometimes quite low, he felt it would be worthwhile to increase the thyroid dose from 50mcg to 62.5 mcg daily, to see if energy levels improve., also Angels growth had slowed down so he increased the growth hormone injections from 1.1mg to 1.2mg.

She is still struggling with episodic changes in moods, facial rash(vascular flushes) temperature and also memory, he warned Angel and Mum there might be a component from her recent proton beam therapy radiotherapy with regard to memory and energy levels and a psychological component to some of these and some of the other symptoms.However he is in no doubt that Angel has a prominent hypothalamic component to her symptoms.

He is to review her in 4 months.

Part 1 – It’s harder now than it was in the beginning

Really struggling with doing a blog post with everything that has been going on for tumour trooper so I will do it in a few parts. Photos below are all of happy times for Angel, the beginning of her journey.

As most of you will be aware if you have Angel or Bev on Facebook,things have slowly caught up with Angel over the past months and she has lost her sparkle feeling low and hates having a brain tumour, in her own words it’s harder now than it was in the beginning.

School for Angel has been a struggle since befor Easter, up until May 29th she has had at least one day off a week, which is due to either fatigue or aching and being stiff and falling asleep a lot during the day, blame the hypothalamic syndrome, not only this she has had moments of forgetfulness, forgetting the alphabet, doing basics spellings and writing sentences , words only part there and when asking her to read what she has wrote she will say what she sees is there but it is not, as she is stressed about forgetting things and not being able to remember things she has even had a rage were she has pulled some hair out.

Best decision for Angel was to reduce her timetable so she just does the options she has chose and the core subjects and drop all the other subjects,but she is in school everyday.

Bev tried to get hold of Dr Didi(endocrinologist) to see if he could see her early to check all her hormone levels, but could not get anywhere, she also updated Natalie her clinical psychologist what had been going on and an appointment was arranged for 31st May at Alder Hey.

The clinic appointment went well, Natalie is sorting out support for Angel in Blackpool as seeing her infrequently is not enough, she needs something more often in Blackpool even if that is in school, Natalie had got hold of Dr Didi herself and informed us he would see us at oncology clinic at 2pm, Bev thinking he had a clinic then.

On arrival at oncology clinic, it was not endocrine clinic it was immunology but they knew Angel was coming, normal weight height was taken and not long after that Dr Didi arrived, he had only come especially to see Angel he did not have a clinic that day , (Bev is so glad she asked to change consultant to him, it makes a massive difference he actually listens to what is going on with Angel and puts himself out for her). Bev did all the talking he just listen, all Angels hormones levels that were last done were normal so Angel was to have her blood done again, to check her thyroid levels,even if the levels are still showing normal he was still looking at upping the levothyroxine to give her a boost to see if the issue of tiredness was to do with that , he did stress to Angel the effects of hypothalamic syndrome and was she happy, which Mum did think at the time she was,so off they went to have bloods taken for Mum to ring back in a couple of days to get results.

Part 2 to follow

Sleep EEG

Angel attended Blackpool Victoria Hospital for this test to see how much melatonin she absorbs, as she doesn’t produce it ,or very little. She never slept well before diagnosis of the brain tumour and still has hit and miss nights of being able to sleep,the issue is not with going to sleep but actually staying asleep, if Angel needs the toilet in the night she has to go in the dark as if she turns on any lights it will stop her from getting back off to sleep, and due to her hyperacusis the slightest noise can way her up(very sensitive hearing)

A brief description of –

Melatonin is produced by various tissues in the body,the major source is the pineal gland in the brain

The pineal gland is a small pinecone shaped gland of the endocrine system,which produces the hormone melatonin.Melatonin influences sexual development and sleep-wake cycles.The pineal gland connects the endocrine system with the nervous system in that it converts nerve signals from sympathetic system of the peripheral nervous system into hormone signals.

So as we know Angel is MPHD(multiple pituitary hormone deficient) it all has a big impact on her,as everything that Angel has issues with is silent, a regular comment by people is how well she looks but that is not the case, at the moment her brain tumour is stable but all the endocrine issues have the biggest impact on her day to day life.

THE TEST

Angel had to be awake at 5.30am to have a light breakfast then drink nothing or eat nothing after 6am.

She arrived at hospital by 7.45 to have obs taken ready for the test, due to Angel suffering so much with fatigue lately she was starting to fall asleep Bev had to keep shouting at her to stay awake, at 9am the neurophysiologist who does the test took her into a side ward to start putting the 23electrodes on her scalp.

The investigation is painless  and a recording during sleep can be helpful. Angel was given some sedation to enable sleep, which for Angel worked well as she was struggling to keep her eyes open on arrival, the test took 1 hour and results are not given on the day.

Update will follow when we have results

MRI update and Endocrine

Sorry for delay in blog post.

Angel attended Alder Hey on 23rd Feb seeing Dr Didi her endocrinologist,  as seen photos of facial swelling and history of severe abdominal pain she was tested to exclude C1 esterase inhibitor deficiency, Angel showed an unequivocally normal result.

She can have shockingly poor energy levels episodically and falls asleep during these episodes, which are likely to be due to her hypothalamic syndrome ,which she is trying to learn to cope with.

Weight gain was 3.4kg over the past few months,however she needs to be cautious about this in view of her other hypothalamic symptoms,which Angel is still counting her carbs.

review appointment in 4months or before if required.

1st March,Angel was seen in Neuro-Oncology Clinic following a repeat surveillance MRI scan, amazing news tumour is stable and no evidence of disease progression.Review appointments will now be every 6months with her next being in September, MRI and MRA.

 

Christmas Day – Money raised

As you may know Angel was asked on Christmas Day to a speech on a charity close to her heart – The Wills Family Foundation.

We were absolutely overwhelmed from the generosity of the people who donated to the collection after listening to Angel’s speech about her journey.

Angel received a cheque for this collection – for £435.34 which will be given to the wills family foundation, so it can go towards helping a local child just like they have helped Angel

Please can all blog followers take a look at the wills family foundation webpage (check out the video angel made for one of there charity events) and share on facebook. 💕

Kings Church

The Wills Family Foundation