Hello world,
Being back at school hasn't given me much of an opportunity to update my blog and for this I am truly sorry. I never imagined GCSE work to be so.... long. I have a lot of homework and as I was ill last week, I have a little catching up to do. I am enjoying all my subjects though - geography, media,history and english seem to be my favourite at the moment though all the subjects fill me with interest. I find classes go a lot quicker than they used to... maybe it's because I am doing subjects I myself have chosen. All my subjects teachers are nice and I am so pleased that I am able to find enough time to catch up on things I have missed. I have had a little cold this week and am due platelets next Tuesday. I am feeling quite well other than being a little more tired than usual. Today I had to take a nap break in school but I felt much better for it.
It has been a long, enjoyable but tiring week so I am ready for the weekend.
Enjoy,
Devaanshi

Education is what builds your brain

Great Spirits have always encountered opposition from mediocre minds!

Hi Everyone.
I I should write another post since I am alright. It is 6.18am and the house is quiet.Everyone is still asleep.
I have had some nice things happen too and I don't want to forget them.
Firstly my little brother got his monitor badge at school. We all went to the assembly. I am so proud of him.

I have started to write a book about my life pre, during and post transplant. I find it quite therapeutic as there are so many emotions present even now.

I am going to be featured in a joint campaign by the Jack Petchey Foundation and the Anthony Nolan Trust to be launched in October.
I hope you will encourage your family and friends to go along and become donors of blood,bonemarrow and organs.

The other thing that has happened is that Rowena our contact at the Jack Petchey Foundation, who by the way is the loveliest person sent me a cheque for £500.00.In aid of Great Ormond Street Hospital to support my fundraising.
I was so taken aback at the kind gesture and also the amazing card and comments from her team.

I dwell a lot on the ruthless,unjust and immoral people that I encounter. When. As my mum says I should also think about those who endeavour to make my life happy. She has set me a task. For every one of those rude callous individuals in my life, I have to balance them with people like Rowena.

So a big thank you to my mummy who is always there for me, all my consultants at GOSH, From David to Persis and both Pauls,to Tina and June(Clinical nurse specialists) my life savers, Rachel and Zoe(my psychologists) and not forgetting my lovely nurses on all the wards I have been on in GOSH. Especially FOX and BADGER.
 most of all to all of you who root for me and keep me going in the most darkest of days. I will keep you all in my heart forever.

-Devaanshi

Hello world!
So sorry I have been seriously neglecting my blog. I have finally finished my antibiotics after two months of constant infusions. Today however, the community nurses are going to come to my house and take some cultures (blood samples put into special bottles in order to see if you're clear of infection) and probably a full blood count. 
In the latter part of last week, there was one day where I woke up and my legs were badly aching. I always ache... generally it is just my back and shoulder area but it was pain that stopped hurting with the morphine. I took morphine as much as was allowed however the pain did not go away. It decreased a little but not enough. Later on in the day my hands and fingers started to ache. I fell asleep for a bit and during this time I was fine. By the time it came for me to go in for my midnight antibiotics... I felt really unwell and my head, fingers, legs and shoulders were really bad. I was sick a couple of times and was on 6litres of oxygen constantly.
It was a scary time. Though a few things happened, such as the oxygen in my room not working and me feeling dizzy - I went home a few hours after.
Since then, I have been okay apart from having constant aching in my fingers, back and shoulder areas. It is because I have osteoporosis (thinning of the bones). 
I have finished the antibiotics but the community nurses came and took cultures so we should know by saturday whether the infection has gone or not... please cross your fingers that everything is fine!
Good night and sleep well
Devaanshi 
Keep moving forward

Hello...
Things have gone pretty quickly. This morning, mummy spoke to Janet ( the cns) when she came to do the antibiotics about how I was feeling and the nurses behaviour towards me.When I went in this evening, three nurses came and said hello and one even chatted a bit. I hope this means things are one the up =D 
Devaanshi x
Your hope can live on forever

Hello...
This morning, I spoke to June, Clinical nurse specialist at Great Ormond Street Hospital, on the phone today. We had a long chat about feelings and what was happening at the hospital. I feel much better and am glad I had a chat with her. I know that there is always help and support for me if I need it. June is so nice.
Haven't been too hungry but managed to eat some garlic bread. It was delicious.... I also had some pizza but the difference was that I added salt, pepper and chilli powder to it giving it a nice spicy flavour <--- saw this on one of my much admired cookery shows.


I feel so exhausted that I have slept for the majority of the day. I watched tv (never get bored of cooking shows!) and read my book in between but I just kept falling asleep. 
At 6pm when I went for antibiotics two nurses said hello which was surprising but I was pleased. Emma and Esther are always nice and pleasant...Unfortuantely, when we went into the room we saw that bed still hadnt been made. This is the fourth day running... basic hygiene is very important - especially to someone as immune deficient as myself. It is practice to make the patients bed EVERY day but this is just unhygienic. The bathroom wasnt clean either. Mum asked for it to be cleaned but she shouldnt really have to.
As we went out after the antibiotics, there were quite a few nurses at the nurses station. About five I would say. The doctor was going out in front of me and they all said bye to him however ignored me completely. This really hurt as I was hping things might get better by now. Living life is hard when youre unwell but living life with added dislike for reasns I am not sure of hurts my heart.
Devaanshi

Hi everyone
So yet again... things are not too good. The behaviour of the nurses is still the same as my last post. The other day, when I was coming on the ward - there were about six or seven nurses at the nurses station. When I came onto the ward two just got up, turned around and walked away. No acknowledgement whatsoever. It hurts my heart because I truly dont understand what I have done. If I got some sort of indication of what they weren't happy with or if I had done something wrong at least then I could amend it and I know. I find it rather childish and very upsetting to just ignore someone. I hope things work out soon.
Devaanshi 


Just hope for the best

Hello... So - things have kinda gotten worse.
It is much the opposite that I expected but seemingly, 99.9% of the nurses have stopped speaking to me. When they see me they all go to the drugs room. I understand that I come in at 'peak drugs giving time' but not at 12am in the morning and 6am. Not every time everyone sees me at the door surely. It really hurts my feelings but there is nothing I can do. It makes me feel as though my disease is contagious. But it isnt and everyone is aware of that. Oh well. Nothing I can do.

What came out of it...

Hi Everyone,

So... As you all know, we were asked to attend a meeting at Northwick Park regarding concerns at the hospital. The people who attended were The head of nursing, Carol, The matron of the ward, Vicky, The Haematology Consultant, Michelle, The CNS (clinical nurse specialist) from Palliative care at Great Ormond Street Hospital, June, The Doctor from Palliative Care at GOSH, Mike, The lady from PALS, Tamina, a family friend, Janine, My mother, my sister and I. Carol started off by saying we only had an hour and a half. Everyone introduced themselves and then Carol asked what my concerns were. She called the meeting and decided to run it in individual sections. I cannot exactly remember the order of it however we discussed a few things. For the first half of the meeting I very much felt like I was being cornered and quite rushed to say what I thought. By what I thought was important... it is quite hard to have a lot of people waiting solely for you. I didn’t expect to be put on the spot like that. I tried to say about how I felt about the way I am greeted... or more so, not greeted by members of staff. I did get my words a bit tangled, even though I had written down points. I didn’t really feel like I was being asked clear questions. I tried to put forward that I felt like I was not spoken to and that I was often just spoken to when absolutely necessary, I tried to explain that there were some nice nurses who behaved civilized such as lovely Sharon, Jonathan, Frank. I was very aware whilst I was trying to speak that in the back of my head I knew we only had an hour and a half.

 I felt a bit like I was being interrogated and got nervous and my words got mixed up quite a lot.  Somehow, the meetingwas moved to discuss clinical care by Michelle because, I believe, of my trying to be clear but being unable to make people understand or listen. I do believe I did get interrupted. Michelle started going on about platelets which was relevant but not a priority point. I felt like the whole conversation just redirected into an unnecessarily long repetition of clinical things. I did tell my sister and I believe June too realised that I felt this wasn't the right things to be talking about. June, tried to give me a helping hand which gave a little more detail on what I was trying to say and explained that she thought I needed to say some more. My sister on behalf of myself explained quite thoroughly the points I was pointing to in my book. There were three that were very important but I wished to hopefully discuss them all. I felt helped by June and Janine very much as did my mum and sister. Janine also spoke about just understanding how I must feel and how my family feel because of the stress/treatment. She explained how nurses should realise that we are going through a hard time and am bound to be worried and anxious. I’m glad she explained that because that was an important point for me as I had spoken with her beforehand about situations where nurses had been...more than just a little bit insensitive shall we say. In the end, we tried to ascertain the main issues and carol said that if I wish to have another meeting I could and obviously vice-versa. She also gave me the opportunity to let her know the details of the person who was highly rude to me regarding going to thorpe park. I will give these to carol as I find it important for these type of people to be reprimanded as it is unfair and upsetting for dying children like myself to put up with that sort of childish behaviour.
Hopefully things will sort themselves out soon - I sincerely hope so.
Devaanshi x
Perserverance - keep on going x

Hiya Everybody,


On Tuesday,, my mum got a letter inviting her to go in to Northwick Park Hospital to have a meeting on the coming Friday. This would be to discuss this blog and things I have mentioned. Apparently, some nurses are very distressed  that I have written about things that have taken place at the hospital. I have simply just stated what has happened that day and with whom as I do with all of my blogs. I mention my family, friends, people I have met on the day. I have no understanding of why they are distressed because there is no reason for them to be distressed if they have nothing wrong right? Well, that is how I see it anyways.


 I am not sure why because I just write down what happens and how I feel. These blogs represent my day to day activities - I feel like I am able to speak freely about how I feel and not bottle things up.  
I am not sure whether I too was invited to the meeting; I would've thought so as it is to discuss my blog and what I have written so I feel I would like to attend.  I am feeling curious as to what will be said but then I know I shouldn't because I am 100% sure that I most certainly haven't done anything wrong. I am just writing a diary really. It will be really interesting for me to see and hear what the nurses have to say. I hope it is a conversation that will allow me to express how I feel even more so because unfortunately in the past, I feel like my feelings have been overridden. Maybe we can discuss things and hopefully can come out with an outcome of better care and kindness which is all I really want. I don't want to have to worry about these things - especially now my time is limited, I want to focus on things I want to do in life. I would really hope this meeting to go well where I am listened to and not ignored. Even now I feel this way because when I am upset nothing was really done and yet when the nurses are upset everyone is looking after them and action is taken. I did think the patients would possibly be put first. 
There are a few of  nurses whom I feel have always respected my wishes however it is sad for me to say that I feel the majority just talk to me straight. I dont even get a hello most of the times. 
Oh well, all will hopefully come good in the end. I hope I am not intimidated as I have been before because I get very stressed out but I know I have nothing to worry about. I am just telling the truth and events of my life on the computer instead of paper. 


Anyways, today I have to go and buy some school uniform. The holidays have gone so quickly so far - i cannot believe it. I think we have just over 2 weeks left but time seems to have flown. I also have a few things to buy such a books and stationary but the majority of my things have been bought already. My friend, Ellie, is going to come round and she is going to push me in my wheelchair if we go out. I am so grateful that she doesnt mind pushing me - Not many people would be able to do that. She really is a lovely person. I am still feeling stiff and achy due to the steroids but hopefully that should wear off soon. 


Im off - but I will catch you later... 
Devaanshi x


enjoy the day

Hello Everyone,

I came back from Great Ormond Street Hospital on Saturday. I am very stiff and quite swollen. I think I feel this way as it has been quite a while since I had my last dose of steroids and therefore they are affecting me more than they usually do.

Whilst there, I had a reaction to the steroids and I had a really bad headache in the middle of the night. I woke up at around 11pm on my first night and I had a headache beyond excrutiating. The nurses were really good though because I was panicking  as I had never had a reaction such as this before.  I had no idea what was really happening, my head was aching just so badly. There were two nurses who had come and they were really good. Though I had never met them before, I just felt really safe. This is never the case and I just trusted them immediatly. I was frightened but felt I could trust them no matter what. All the other nurses, like Katie, Lisa, Kate etc were all so kind to me too. The next day, the nurses gave me chocolate eclairs because they felt so bad I had been in pain. I was so grateful - It is nice that people care so much. I really think they deserve the world. They are so kind.

Yesterday, I had to go into Northwick Park Hospital for antibiotics however I fainted on the way walking up to the door. I can't really recall what happened but I remember my chest was hurting and aching. Lynn really helped and so did Jonathan. The doctors were nice too. I was stressed out but they helped me so much. I fell asleep at the hospital and we decided I would go back in the evening to get my antibiotics instead. I wasn't too happy about the nurse who was going to access me due to the fact tat she seems to speak to me only when it suits her. It hurts my feelings because I am not aware I had done anything wrong. I cannot deal with such pety behaviour at times as hard as these. I would rather just stay away from that. Oh, well. This behaviour is now expected. I am really glad the nurse who was there in the evening was Sharon. She is really nice and always makes sure I am comfortable. I am glad she was there.

Hopefully, I will be feeling better and more well recovered from my steroids and may be able to just relax today. I may invite one or two of my friends round too.

Best Wishes

Devaanshi  x

Appreciate those who care for you and care for those who appreciate you

h guys
Just a really quick message to let you know that I was admitted to gosh this morning for steroids. I promise to update my blog fully regarding the last blog message and what happened from then on. So sorry to keep you delayed but please do keep commenting and I shall see you in a few days. Lots of love
Devaanshi x

Keep smiling xxxxx

Yet Again...

Hi guys,

Yesterday morning was pretty rubbish. My mum always calls Northwick Park just as we leave the house and asks if someone on the ward could please open the paediatric entrance for us in five minutes from the call as it is locked and I cant walk thorugh the hospital.. We called at 6:50am and got there at 6:55am.When we got there, we expected that someone would have been by the door as this generally is the case. I cannot walk through the hospital due to my immune deficiency and I cannot wait in the cold due to carrying an nfection and this could easily turn into pneumonia. We stood by the door and a nurse had just gone back inside. I think she just came as soon as we called, took a glimpse and then gave up. We had to wait outside for ten minutes and because it was first thing in the morning, it was freezing and my legs ached because there was no seating. My mum had to ask the security man to let us in which he did. We were lucky he was kind as sometimes, they say no. When we got in I was appauled to see about three people just sitting at the nurses staion when they knew we were waiting outside. I saw the nurse who had walked back after probably just glimpsing and she said she had come but we weren't there. I would've waited - especially when someone  is so susceptible to infection. I was really upset; It hurt me as noone made the effort. I took a seat in the waiting area by the door of Jacks Place so I could catch my breath as I had been waiting outside for so long I got sooo poofed out. The matron, Vicky Peploe came and was really rushing me. ' Come on come on '. I didnt even have enough breath to answer that I was tired and she kept repeating herself. Even though noone had spoken to mum, I was glad she told them that I was tired because I felt really under pressure to get up but I was so breathless that I needed time to catch my breath. I waited but Vicky was standing over me and I felt quite intimidated and under pressure to calm my breathing however I think it just raced faster because I felt under pressure. When I felt slightly better, I went into my room and sat down on the chair. I was surprised to see Ellen, another nusrse, there too - usually she is really nice to me however she didnt talk at all. It hurt my feelings because I dont feel I have done anything wrong. I took my portocath lumin (tube) out as I was already accessed but it Vicky sat down and pushed everything in so quickly and roughly dropped the syringes in the tray. It was like she was trying to get rid of me as soon as she could. I felt hurt. I feel deeply upset because I havent done anything wrong. In the aftenoon it was dejavu as the rushing of giving my antibiotics started again and another nurse accompanied Vicky Peploe. I would've thought that the ward matron at least could do something as simple as this by herself but maybe she needs extra help now. If the ward matron acts with such behaviour, the lack of speaking to me, the rushing - it doesnt really surprise me that her nurses act this way too.

In the night time, I went in for my antibiotics and I was met by the lovely Sharon. She came at me with a huge smile and she was really jolly. She spoke to me about everything and I was so glad. She is such a nice smiley, caring person and she is so efficient. She had everything ready and was so on the ball. I would love it if she were always there whenever I went in because she is too nice. She really cheered up my evening.  I had her do my morning dose of antibiotics today and she was still full of bubbliness and smiles even after working for 12 hours. I appreciated her efforts and can guarantee that she is much loved by a lot of other patients.

Seeya Soon,

Devaanshi

I am Devaanshi Mehta. I am nearly fifteen years old. I am going to die

Hi Everyone,
Once again I have had a really hard time over the past few days and you must have guessed - It was Northwick Park as usual.
I have been relatively unwell for the last two days. I have been off my food and not really feeling myself. I don't seem to be able to keep anything down. My temperature hit 38.0 which is really quite high so we thought we ought to get it checked out at Northwick Park because I was feeling rubbish. I wasn't too worried and nor were my parents. We decided to check my fbc and crp counts (full blood count and a count to help discover if you are carrying an infection or not) because I had only just been taken off a months load of antibiotics on the Sunday prior. I was feeling unwell and had been sick a lot - I also have lost my appetite and I found this really unusual as I had just finished them a few days ago.
My mum rang the childrens ward in the hospital as we always do because I carry a white card that allows me to go straight to the ward without going through A&E as I am immune surpressed. For some reason beyond my understanding, the doctor on the phone said she would check if I was allowed to go to the ward. I was really upset about this because I felt so unwell and it was so unneccesary. We have  a special cad for a reason The people who make decisions don't even know who I am. Obviously I could catch something potentially dangerous to my health as I am so badly immune surpressed and more so because I was really unwell and that having steroids that dampen immunity anyway. The doctor rang back after a while and said it was fine for me to go to the ward. They should know what the plan is. Imagine if it was a dire emergency.
 Once I got there, the registrar said that Mier, a doctor there, had told her that I had to stay in hospital. I'm on palliative care. Do they not understand that if anything happened, that I want to sleep at home. I didn't mind the medicine or the antibiotics, I just don't like sleeping there at all. All I had been doing was lying in the bed for three hours and I only got one set of observations done. The tv didnt work ... I live literally about 2 mins from the hospital and surely it's better if I go home and watch tv to take my mind of feeling so unwell than stare at the wall being bored and feeling worse. If my mum wasn't there, anything could've happened. I could have passed out or something but no-one would know - we don't see them often at all. My health was not so bad that I could not go home in between antibiotic doses. As it is the nurses only come in to do obs if they are free once in a blue moon. Isn't it much better that I can have more people looking out for anything wrong at home than hoping a nurse comes in once in a blue moon there. I feel so much  more safer at home. Trust me.
My mum spoke to Mier and came back into the room. SHE HAD BEEN CRYING. I don't want my mum to cry. I don't want them to hurt her.It is so unfair.We should be able to put our entire trust into the staff at the hospital however I cannot let anything pass me because I am scared and frightened at how easily things can go wrong.
My mum's friend came with us and she was appalled. She said she felt like crying from the heart. We were very stressed at that moment, especially me.I asked mum to call the palliative care team just in case as I did not feel as though they were treating me with the right level of respect for my feelings. I felt that they were more worried about getting home in the evening than taking care of me. No one was willing to compromise at all. Once mum called palliative care on my behalf explaining the situation, Michelle (palliative care doctor) said it was a perfectly reasonable idea. It could have been sorted out so quickly yet we had to wait four hours fr anything substantial to be done.
Michelle spoke to the doctor who had taken over from Mier. He is called Wolfgang. He took an awfully long time getting to the hospital. At 7:50pm, we were advised that he was on his way He didnt come until 9:15pm. He is truly the unsensitive, heartless, cold man I have ever met. He was going to try and access my portocath (little titanium disk that sits underneath the skin and has a tube to connect to the heart and needs to be accessed by a needle) and ruthlessly said he needed to see before he could stab me. As in access my portocath with a needle. I would have found this very rude anyway however it did not inspire confidence due to the fact that they had already tried to access me three times prior and I was in tears because the pain was so much. I asked him to please not say a word like that as I was in pain and it didnt fill me with confidence. He then got a little stroppy and said ' what can i say then? can i say cold? can i say freeze?' he repeated this and said... ' you see how i said it only nce and youve said it three times' (this was when i asked him not to use the word). I found it very childish and cannot imagine that he should work with children who are vulnerable. It really hurt my feelings.

Michelle saved the day and though they were very clear that they were not happy about it, I was happy to know I could go home after the antibiotics each time.

I think Northwick Park needs to be investigated. I think Panorama should be brought in undercover or a government enquiry into the goings on. These people should not be allowed to do this with anyone.Even when I am no longer here I don't want any other child to suffer.It makes me sad,angry and upset. Noone seems to have any compassion. I would never have expected the behaviour I have seen throughout my time in the hospital by children, never mind grown adults. Wolfgang spoke in a very sarcastic and patronizing way to me. I have no wish to be spoken to so rudely when I feel unwell or even when I feel fine.
If it's not the nurses,it seems the consultants take their place.Maybe they want me dead so they don't have to deal with me anymore. Noone seems to speak to me much anymore anyway.

I am now faced with going in every day at the moment 4 times a day, but at least I don't have to stay there to be let down any further. It upsets me that  no one cares at that hospital.Even if they don't like me they should be proffessional not childish.. No one considers my feeelings . I feel as though noone helps and feels they can treat me like this because they know that sooner rather than later, I will be dead. I get frightened of going to sleep at night also partly because I feel as though their incompetence could kill me.  I know they hate us but the only reason I stay on there is because when I finally go I am with my darling brother and sisters.,I know I will have to suffer for my decision.Thank god Dieudonne is on over the weekend so at least he will be nice to me. The handful of people who are lovely to me in that hospital - Thank you. You keep me going just that little bit more however your collegues tire me out. I'm sorry you have to work with such horid, insensitive people.
I am worried about all the other children who go through the same things I do and their parents cannot even speak english.

Just for five minutes I want all of them to be in my shoes and understand because life,death and terminal illness  means nothing. It's just a job to them a pay packet at the end of the month!

-Devaanshi

Busy Busy Busy!

Hi guys!
Today I had the most amaziiiiinnnngggg day. I went shopping....wait for it...WITHOUT MY WHEELCHAIR! Ellie and I took it slowly, she is so lovely and let me take my time and carried my things bless her. We spent an hour in the shopping centre just walking around...then sitting...then chatting....
We went to the art class together, which is just a two hour relaxing session of art at my school. It was so hot but it was calming....however I was a bit tired afterward. Ellie went home after the art class and so did mum, my brother Dushyant and I. After an hours break, mum and I got picked up by some very nice friends of hours, Ellen and Tina Bisci, and we went to have a pamper. The lady who did it was so lovely... I have some fantastic fake eyelashes and pretty manicured nails. I am so happy. Mum looks absolutely beautiful - amazing! She got her eyelashes and eyebrows done. We just had a laugh and a good old moan. It was so relaxing - for once, I didn't feel like a sick child - I felt like a glamorous teenage girl. Even though I did get tired I just had the most amazing time and the pamperer, Caroline was an angel in disguise. Ellen and Tina are angels as well - they are both so so lovely and I am so glad we know them. Thank you!
We are going to go to sleep and wake up being gorgeous girls. Tomorrow I am due to go into GOSH for steroids however we have to check if there is a bed free first. I am just over the moon right now.
LOVE, LIVE, LAUGH
Devaanshi x - I am a normal teen. And I can be gorgeous!

Typical Day... coughs, ambulances and hospitals

Hi guys,
Yesterday I had a tough day. We were going to take Dushyant to watch Horrid Henry so we were all getting ready. I had just had a shower and was relaxing when I got a really bad coughing fit. I was kind of choking on the breath I didn't have...if that makes sense..? I couldn't catch my breath and then I felt really unwell. I'm not a hundred percent sure what happened after that, only that I couldn't breathe and everything went black. I could hear my sister shouting to my mum that I was frothing at the mouth. My mum called an ambulance and the woman helped me calm down. I got taken to Northwick Park and I felt okayish...just really weak and sleepy and in pain of a tight chest.
 After five hours of  tests, observations and examinations... I was allowed to come home. I just rested for the day and slept a lot but it was so scary for me. I was afraid that I may not have come home. I even started saying goodbye to my family. I am now going to live each day to the full and I am going to appreciate everything I have from now on.

Stay happy,
Devaanshi

- live each moment to its full potential!

Morning!
Today is Fridayyyy.... the last day of my antibiotics!
I am sooo relieved. After so long am I finally being rid of the antibiotics.
Today, I am feeling quite lethargic but hopefully we can go out today so that might give me a boost. Hope all is well.
Devaanshi x

: ) just be happyyyy!

Hey
The past few days have been pretty ok. 'Ok' meaning that I havent had to go to Northwick Park. The community nurses have come to give me my antibiotics and will do so until I finish my antibiotics on the 29th. I am so pleased. I can, for once, see the light at the end of the tunnel! I feel fine now, thought vI did have some chest pain yesterday. It felt like my chest bone was swollen but I have had it before so I just took morphine which seemed to help.
I am feeling rather tired recently... I have no idea why though. I have been in my wheelchair whenever we have gone out and am yawning constantly.
Also, my poor little brother is unwell. He has had a temperature so I have had to keep away from him. Though we thought he was getting better as he has not spiked a temperature today, he has been sleeping a lot and his arm is aching for no apparent reason. It is swollen though.
Today, my friend Ellen came round. It was really nice to see her after such a long time. Her mum, Tina, came too and she is lovely. We had a big girly chat and have organised for Ellen and I to go to a pamper place. On Wednesday evening, she and I are going to have a facial, our eyebrows and fake eyelashes put on...I CAN'T WAIT.
I am going to TRY and upload international evening viedos's
Bear with me please though
Thanks
Devaanshi x

Live life....dont think - just act

A day for ranting

Hello again,
Another rant - maybe it's a day for it....
Unprofessionalism by Devaanshi Mehta

It's worrying that people at my school have called Ms Burbidge unprofessional. I can recollect many unprofessional incidents that have happened in the past couple of years at Nower Hill
Like when Mrs May and Ms Cripps took me into a room for a meeting away from anyone else and said I wasnt allowed to do a powerpoint to explain the basics of my health issues. I needed people to understand as I was getting bullied at the time but I wasnt allowed to show it. I also remember during the conversation that I was told that I was taking' the moral high ground' with the girls that had been bullying me. I also remember being told by Mrs May that the Jack Petchey award I had received happened because they had ' bent the rules' in order for me to get it. I was soo upset at this time. Surely that meant I had not earned it.
I remember right at the middle of year 8 when I was accused of not having a BMT. This really hurt me so much. Noone knows how hard it was for me in Great Ormond Street Hospital during my transplant.
This incident wasnt even investigated fully. It seemed as though Mrs May would stick up for her 'friend and collegue' regardless. I was really distraught as I thought that it was so unfair. I understand that some people are ignorant about these things and just need to be educated however no action was taken and I didnt even get an apology. Through all the unecessary stress, I became severely ill. These things wear me down. I wouldve thought that any decent person would have apologised however I have grown to learn that I should rise above behaviour such as this.
Another thing that comes to mind was when we were told that ' I could not come and go into school as I pleased' and how it was 'unfair on the teachers'. I cannot help being ill. I would rather not be but I enjoyed school and tried to be in every moment I was able. I also remember Ms Cripps telling me ' your mum and you need to learn how to follow instructions'.. I had just come out of hospital and was told no stress so I asked if maybe we could wait for my mum to have the conversation. I was told ' no. ill tell your mum but right now im telling you'
My mum was told that she wasnt allowed to talk to any office staff - just go in and see Ms Cripps if she needed anything.
I cannot take this behaviour. I am used to it from the past with my peers but never have expected that adults portrayed this childlike behaviour too.
When I asked that I would like to take a friend with me into any meetings as I felt uncomfortable, I was told that I wasnt allowed. Yet I had one or two teachers and me just by myself. I felt insecure and intimidated but no one seemed to care.

I have Northwick Park on one side, Bad health on one side, Lack of mobility on one side and Nowerhill on one side. I am trying my best to stay alive as long as I can, but if things carry on like this - I fear I will crumble.

When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, "I used everything you gave me."  


Devaanshi 

Heartbroken

Hi everyone.

Unfortunately the past few days have been particularly hard for me. I've discovered my teaching assistant, Ms Burbidge, whom I trust,respect and am used to, has decided to leave my school. I'm upset, emotional and I feel my support at school has been taken. I'm sad because I feel like it's my fault but understand her reasons for leaving. After all when people like Mrs May and Ms Voden make it hard for Ms Burbidge to do her job properly, what other option did she have other than to leave? When I heard that Mrs May and Ms Voden had cornered Ms Burbidge about her 'lack of professionalism' whilst looking after me, I was devastated. Is it unprofessional to make a child happy while they are at school? I thought that Ms Voden was meant to be supporting me too! I think its really unfair because Ms Burbidge has been my teaching assisstant for the majority of this year. I was able to do one of the things I had never been able to do before, like deciding my form needed to know that I did not have long left to live. We sat down and spoke about things we could do for memories, whereas I used to be apprehensive discussing things like that. Once again, for some reason beyond my understanding, I find that mrs may and ms voden are just trying to make my life difficult again. It hurts.
I'm pleased that we and Ms Burbidge can continue our friendship without people interfering, but its a shame it had to come to this. I really don't want to go back to school. I feel like they want to take away my support so I leave the school and so I don't waste their resources. People can be replaced in jobs but I won't ever have that chance. I dont understand why people are trying to make the time I have left more miserable than it needs to be. All i want is to go to school as much as possible - there is no second chance for me. Time is so important to me; I dont want it to be used up by powerhungry, egoistic people whom one of which has nothing to do with my care at NH.
Once again I feel completely alone. 

One problem finished.....maybe not

Hi everyone
Today it was my last day of year 9. I cannot believe how quickly this year has gone by. I gave all those who I felt have supported me during my time at nower hill, presents and/or cards. Thank you Abi and Sue for taking the time to make sure I was okay.
I thought I had finished my antibiotics after 7 days of them, non stop last week. I had to go in each morning at 6 am, go in in the afternoon/late afternoon and in the night. I would be out late, 12ish and up and back again in the morning. My portocath had to be taken out as it had already been in for 7 days, I asked if i were able to use a cannula so as not to go through the pain of being reaccessed as my portocath was sore. They said yes and gave me a cannula that I used for the remainder of the antibiotics. On the Friday, we went to Great Ormond Street Hospital and they were stunned at the fact that my cannula was having Intravenous antibiotics going through it. They said that as my on board infection was a line infection, the antibiotics going through the cannula would be of no benefit towards ridding the infection.
We explained this to Dr Linda at the hospital and she said she had double checked with the microbiologists of northwick park hospital and they had said not to worry, it would work.I am really tired of everything. Now, Great Ormond Street contacted northwick park to say that I still have the infection. I have now been put on antibiotics again. It is really upsetting as because of Northwick Parks careless mistakes, I am having to suffer. I worry about those children who walk out of northwick park ' supposedly well ' and are not looked after by Great ormond street. I was saved because Great ormond street discovered this infection. I do not like people playing with my health and that is all northwick park seem to do.
Vicky Moat made more comments about how she tried to hide from me when I went to thorpe park. I dont find it amusing at all that she didnt want to come and say hi. She said ' I saw you sitting on the bench next to the teacher and I was like...noooo.... lets go here' and she even accompanied this horrid comment with an action of her covering half her face with her hand so as the other side off her face couldnt be seen. I am tired of these playground like actions and am tired of being messed about.
No one ever seems to care that I have to go into hospital and this cuts into my plans.
I am way too tired of everything.

Hello Everybody

Hi Everyone

I hope you are all doing really well.
Today I went to Nando's for my friend's birthday,before that I had to go to hospital for my antibiotics and platelet transfusion At GOSH yesterday they found that my platelets were only 15.I am, to tell you the truth sick of going to the hospital. I need a day off from it. I'm hoping that tomorrow's dose will be the last.
Northwick Park tires me out. If it's not one thing it's another. Some of the nurses are nice enough and even the doctors.It's just the minority that ruin it. Last week a nurse told me that she would avoid me at Thorpe park as she was going on the same day as me. She was so rude.Why? because I'm sick and in a wheel chair. It never ceases to amaze me how playground like their behaviour is. No matter how young they are,they are still adults!
My mum was very upset today with one nurse. I'm not sure what went on but I could see that she had been crying. I hate it when she cries. I have to be nice to them but if I never had to go there I would give them a piece of my mind. They are always talking about the parents and patients,however i think secret camera's should be taken to Northwick Park and everything filmed and why do they get notice before an inspection? It isn't fair!
School is good, I like all my teachers and I did fairly well in the tracking data. I'm really looking forward to year 10. Seems like only yesterday I was starting year 8.
At GOSH my consultants were great as usual and so too were my nurses. Well that's all from me for today.
Life is only a heartbeat. Enjoy ,Enjoy , Enjoy
-Devaanshi

Hello Lovely People
Today I went to school for the whole day! I was tired at the end of it all but I'm glad I persevered. I woke up feeling really lethargic but once I was out on my way to school I felt much better. I had English for the first two lessons. The community nurses came to school to administer antibiotics as I have a line infection. It makes me feel a little under the weather but not unwell. I had a cannula as my portocath was still sore after my last transfusion at the hospital. However, I managed for the anitbiotics to go through but had to take the cannula out. It was so sore and even now it is still sore.
For the second half of the day, I had, library and then double maths. This wasn't as bad as I expected and I managed to put some skills I had learnt with my tutors to good use. I didnt get everything correct but I didnt do badly.
I am absolutely exhausted now though!
I have Great Ormond Street Hospital clinic appointments tomorrow however I was due to be admitted today however there were no beds on the ward. I have so much to do... Im going to watch Harry Potter with my best friend, then on saturday it is one of my friends birthdays. Next Tuesday is the last day of school and we get to have mufti..... Ill be glad of the hlidays after that. I need some time for rest and relaxation.
Love Devaanshi x

Even if life gets on top of you, remember there is always someone who is worse off than you are.

Thank you

Hi Everybody
International Evening was a great success. Thank you to all of you who made it a really special evening. I enjoyed the event so much and hopefully we will have raised lots of money for Great  Ormond Street Hospital bone marrow transplant unit. A very big thank you to Sachin Tendulkar for donating his cricket bat and cap. I cannot tell you how overwhelmed  I was. All the mums from when I was in transplant came and it was amazing seeing them again. Especially Caroline. Angela was such a lovely person and i'm looking forward to seeing her again.
I had platelets today and am still on I V antibiotics.I am feeling much better even if I am tired.
I will post some pictures up for next time.
Have a good day

Devaanshi

If all else fails have a cream cake :)

Overtime at the hospital

Hi Everyone

I hope you are all well in your parts of the world.
I have not been too well lately. I have an infection and am on i v antibiotics. It's such a bind having to go to hospital for them. They did try and admit me but my mum negotiated with them and they agreed to let me come home so I could sleep here. Which is very nice of them.
My consultant agreed to let me go home, and we made a deal that if anything happened I would go straight back.

I have to be on the antibiotics for a few more days but once they become once a day the communitiy nurses will come out to the house or my school to give them to me.

The international evening is on Saturday and we are almost ready for it. It's been hard since I haven't been well but it is all coming together now.It should be a good night. I am looking forward to it,especially since all the mums we made friends with when I was in transplant are coming.


Finally please remember to go and donate your blood,bone marrow and  organs. Any of these will do.

Life is a precious thing. Embrace it with enthusiasm.

Hi Everybody,
I cam out of Great Ormond Street Hospital on Monday after my monthly steroids. I spent the full four days in there organising our upcoming fundraising events. On Thursday, we had a sports day cake sale for GOSH and though it had been raining the day before... the first half of the day was lovely and sunny. We had to organise all the cakes and looking at them made me hungry. Lots of people had been so gracious; there were a large variety of baked and shop bought cakes. Lots of people worked really hard - I was touched at how dedicated everyone was and how determined they were to make money. It was a lovely morning and we made nearly £500. I was overwhelmed!
I left sports day early as I was going on a school theatre trip that evening, so I went to sleep as I would be coming home late. We went to watch the War Horse at the New London Theatre. I was still tired and achy from the steroids and the day in general, however we took my wheelchair. It was amazing. The horses were so lifelike and the puppeteers were able to work with eachother fantastically. I had to go in through the stage door due to my wheelchair and because all the dressing rooms were here, the man showing us the way had to stop and shout 'PUBLIC' so that any actors could hide away before we passed. It was an amazing experience.
Thanks
Devaanshi

Some things you just gotta do

Hi everyone,
Today I had a pretty rough draining day. I felt I should tell my close friends that my illness has progressed and what status it is at now. One was okay but the other was extremely upset. She came round o my house after school and we just hung out. It is hard for everybody and I know that this was something I wanted to do. Not everything can have a time and date. Sometimes it is just the right moment. I wanted to do it and I am glad I did.
We are all feeling a bit down in the dumps but hopefully tomorrow will be okay.
Devaanshi

No matter what hardships you go through in life, no matter how minor or how sinister, you carry on because for the ones you love, it is worth it.

Hi Everybody,

Today I went to school again for half the day. I had english and we watched a movie called A beautiful life. It was in Italian but we had subtitles.
I had a chat with Mr Warren today, He is the teacher who is going to look after me at school from now on. He is very nice. We talked about how we are going to tell my form about my health issues. Hopefully they will understand once it is explained to them.
I am going to do a presentation of my own which I think will be a good thing.

Last night I woke from sleeping about 12pm and I found that I couldn't take a deep breath. It was a horrible feeling. My mum turned up the oxygen and gave me some Madazalam and it helped me. The symptom care nurse advised us to do this. I felt like the oxygen was blocking my breathing even though it is supposed to help.
I stayed up till around 3pm with my parents and then went to sleep.

I hope you all have a lovely evening.

Truth and love are the paths to freedom!

Exhausted

Hi Everyone

I hope you all had a good day.

 I have had a pretty tiring day. I think it is because I am due my steroids again.I did go to school this morning but I had to come home early as I was so tired.
Miss Cripps, my head of year spoke to me today. She asked me how I am. It makes me feel uncertain when people who have spoken to me both rudely and dismissively in the past change their attitude constantly. It confuses me and though they seem to easily be able to forget all the rudeness and ignorance they have displayed towards me in the past, i simply cannot. Anyway enough about her - no more distressing thoughts.

I came home early and had a sleep which lasted three hours and then I just chilled with my brother and sisters.
I made someone smile today so I achieved my goal.

The cake sale is nearly upon us and so too is the international evening. Lots to do , not enough time to do it.

I don't want anyone to look at me when I enter the room, Just miss me when I leave.

-Devaanshi

GOOD MORNING WORLD!

Hello everyone,
I am up early and everyone else is still in bed. I thought I would update my blog early today because as you know when I am not very well I am not able to update as much as I would want to.
Firstly let me say a big thank you to all of you who keep me going. Especially you Caroline! You are like the friends I can't see but I know you are there rooting for me.

I was planning to go to school today but I don't think I will because of yesterday's events. I am a little sad. I think I should make the most of today. Somehow I think why should these events make me feel so down.

I have lots of things to be getting on with like the International Evening preparations and I'm looking forward to the awards ceremony for the Jack Petchey. I am in GOSH that week but they have said I can have my iv's a bit early so I can go to the awards and then I will go back to hospital.

My hospital is so fantastic. My doctors are amazing especially David, Paul is great too but lately he has been giving me news I don't want to hear,but I know he cares. The nurses are fab. Tina is great, she introduced me to a wonderful mouthwash called GEL CLAIR which was on trial during my transplant. Don't tell anyone but I think I'm addicted to it.

Well I hope you all have a lovely day.

I don't want to change the world. Just make a difference. My goal for today is to make one  person smile!
-Devaanshi

Drained!

Hello Everybody
I hope you have all had a better day than me. I was planning to go to school for the second half of today but I did not go in the end.

My head of year called my mum.I'm not sure what she said but my mum was very upset, I know she had been crying,but she took the phone upstairs so I don't know what is going on. I hate it when mum cries.
All I know is that something really bad has happened, She said that I did not have to worry and she had dealt with the matter so I didn't push it.

I decided that I did not want to go to school because of the call.
I have been a bit more unwell today,I think that is because I am a little out of sorts. I am going to  go to school tomorrow though.
I am a little apprehensive but my sisters said it will do me good. I used to enjoy school so much but not anymore. I am so exhausted!

Hopefully tomorrow will be a better day.

Devaanshi