What Now???

Just taking time out...

2012-01-26T12:06:00.000-08:00

Hello everyone...
Yet again, its been a long while since I last blogged. I have been unwell on and off throughout this month. Unfortunately, due to this my platelets were dropping much quicker than they usually did. Usually, I have a platelet transfusion of around 600mls every eight days. During the period where my health was not so good, I needed platelet transfusions every four or five days. I am glad to say that my platelet count is slowly returning to normal as are the frequency of having transfusions. When I was unwell, my blood count dropped more often than expected and I had to have 6 hours worth of blood every three weeks or so rather than my usual 6 hours every two to three months. This was worrying for everybody but I am thrilled to say that I am much better though I still have some days where I don't feel so good. I tried to make it to school a couple of times and managed to make it there for a couple of hours on one day but on another had to come home after just an hour due to extreme tiredness. On that day, I slept through the whole of the day and the night. It just goes to show how different each day can be.
Hopefully, the rest of the month will be positive and healthy
Best wishes and Smiles
Devaanshi x x x

HAPPY NEW YEAR ! ! !

2012-01-01T09:03:00.000-08:00

Hello to everyone,
Firstly, Happy New Year ! We have arrived at the great stand of 2012. I hope 2011 was the best possible year and the coming year is just as fantastic for us all.
I have not been updating my blog as regularly as I used to because unfortunately, I have been really unwell. I keep getting infection upon infection and constantly feel weak and tired. I have been trying to keep my drinking up because I haven't been able to eat as much as I used to. I have been keeping up with having my platelet transfusions at the hospital but recently I have been having to have blood and platelets more frequently. The infection probably is just dampening down all my cells.
I am feeling a little better and maybe 2012 will be a healthier start, a healthier year.
Enjoy the day,
Devaanshi x

IT'S CHRISTMAS!

2011-12-25T08:36:00.000-08:00

MERRY CHRISTMAS EVERYONE!

I hope your Christmas has been very enjoyable so far - I hope Santa brought all the presents you wished for and that your day with family and friends goes smoothly.

Best Wishes

Devaanshi

Appreciate those who are there for you and care for you.

2011-12-20T11:36:00.000-08:00

Hello Everyone,
It was my 15 th birthday on Sunday and I had a pretty amazing day! I woke up at 7am that morning and everyone had awoken. I saw lots of wrapped pink wrapping paper. I got a foot spa, a facial sauna, a 5 in 1 styling kit for hair, Umberto Giovannini (i think that is how its spelt) Hair product kit, 5 mini perfumes that you dab on rather than spray so the air fumes aren't very strong.and wont make me cough as much. I also got a Gok Wan complete bath,shower,scrub,lotion, shower cream etc. My brother bought me diamante headphones and I got some stuff from shopping afterwards. We had a meal but then my ultimate present was some diamond earrings.
I had an amazing day. Thanks for everything
Devaanshi

Birthdays... they couldn't get much better than this!

2011-12-20T04:03:00.000-08:00

Hello Everybody....

So... I've been unwell on and off recently. I’ll be fine minute and terrible the next. It is pretty annoying. I also seem to be finding myself coughing quite a lot - I always have a cough but this cough beats all others. I am also getting very exhausted all the time and pretty lethargic. On Friday I felt really unwell and had to go to my local Harrow hospital. I was pretty frightened for I had restricted breathing. I was sick about 15 times before the doctor came in after they had finished the whole of ward round (when they visit all patients in the children ward). I was so panicky but I had no energy to say anything due to my stomach pains, the constant vomiting and the pain. After a little while, my mum went to check if any nurses were around, as the oxygen mask had not been set up in the room. I found this quite odd considering that I do have lung disease however maybe they just didn't remember. That day, Johnny from X Factor was on the ward so I assume they all had to get pictures and autographs before they could attend to patients. In the end, I got Intravenous fluids and I'm sure I had instant morphine and medazalam ( very strong form of morphine - contributes to pain relief, and are, controlled drugs) - (calming medicine to make you relax).

I was petrified.

I’ll be back to blog more later... love you and leave you for the moment

Devaanshi
Though the weather is cold, yucky and gloomy – If you see a smile it’ll cheer up your day.

# Smile at someone today and see the difference you make

2011-12-15T11:06:00.000-08:00

Hi Everybody,
Glad to be back! I have been so unwell. I am on Intravenous Antibiotics and am getting better fingers crossed. I planned a birthday do due to my birthday being on December 18th though I managed to have a wonderful birthday celebration meal at Pizza Express on Sunday. I was so scared I would still be ill for it but I managed to go and enjoy it. It was fabulous and many thoughtful friends came. I still didnt manage to go back to school however on Thursday, the Great Ormond Street Hospital Charity Christmas Party was held at the Royal National Hotel. I went and showed my support and met some really lovely people. Tess Daley, Chris Moyles and many others. I had a good time though it was very tiring. I had my wonderful brother, Dushyant, my friend Sarah, my fabulous sister, Tejal and my superstar mum come with me. Pictures will be posted up on the site.
Lots of love and I wish to be better very soon... I even popped into school just to say hi today!
Devaanshi

Hope never dies so long as you think positively.

Glad To Be Back!!!

2011-12-13T07:48:00.000-08:00

Hello everyone,

I am pleased to say that I am on the mend. It was so frustrating that I couldn't keep you all informed about my life however I fell incredibly unwell. I felt a little unwell in the middle of November so Great Ormond Street Hospital brought me in early to have my steroid treatment which usually makes me feel a bit better. I had my stay... which consisted of nothing more than it usually did. There were no complications or anything. When I arrived home, I noticed that me back/shoulder/ limb aches were much more severe than usual. Though I took all my pain relief I was still just in pain all the time. During the next couple of weeks I got pushed back with a very bad infection of some sort. I was bed ridden for ages and couldn't eat a morsel, though I was on the loo an awfully large amount of time. I felt terrible - couldn't go to school or anything however I made the decision that when it was put to me to go into Northwick Park Hospital I wouldn't be able to stay or go and have intravenous antibiotics. I couldn't deal with it anymore. For a couple of nights, an ambulance had to be called to our home at night. On the first time, I had severe chest pains and popping sensations in my chest. It was so painful however when we arrived at the hospital, everything settled down slowly but surely. The second time, two nights later, I woke up and went to go to the loo. I fainted on the way back and then had chest pains that were excruciating. I thought it was the end of my life. We were once again taken by ambulance to hospital and we were in resuscitation from 11pm to 3:30 am. I got so scared but after lots of morphine and fluids, they allowed me to go home later on that morning. If anything happened, I want the end to be at home with all my family.Of course the question came of what to do to treat my infection and GOSH very kindly liaised with the local,my family and I and we negotiated that I would have oral antibiotics at home. Unfortunately however, the next day they found I had a specific infection and have started to treat me with intravenous antibiotics. It isn't so bad because the community nurses can come to our house during weekdays to do it.
On Sunday, I had my birthday party with some amazing friends. We went to Pizza Express and had a meal. Everyone was really nice and I had a fantastic time. I know just how much they care. Pictures will follow.
Have a lovely evening
Devaanshi
Think of those who make that tremendous effort just to make your life a teeny bit better

Devaanshi Unwell :(

2011-12-06T08:02:00.000-08:00

Hello Everyone,

Devaanshi has asked me to update her blog as she is very unwell presently. She knows that there are lots of you who have been waiting for her new post however she is currently going through a rough period she will write as soon as she is strong enough.
Thank you for your patience.

Quote - Have the courage to live. Anyone can die.

Devaanshi's mum.

2011-11-17T16:07:00.000-08:00

Hi Everyone...
So... exciting news!
On Sunday went shopping with my friends. All day on Saturda I was deliberating on whether I should or shouldn't take my wheelchair. I knew I would get extremely tired without it however I wanted things back to normal...when I could walk. On Sunday, my mumdropped me offin the shopping centre and then once my friends came, she went to do some of her own shopping. I had decided not to take the wheelchair so mum said to call her if I felt I needed it so she could go and get it. My friends and I shopped and we had a fabulous time. Though we had to sit down very frequently and our lunch was two hours to renew my energy I MANAGED IT! WITHOUT THE WHEELCHAIR! I was so proud ofmyself! My lovely friends deserve a hugeeee thank you for being so patient with me. ThanksGuys!
I then started to walk around school on Monday a little so hopefully my legs will getstronger.
After a good day at school I went home and everything was fine. I settleddown. I was watching tv and then suddenly my eyes started to go really blood shot. I then noticed that a few of my nails had blood seeping through and the things in my mouth that I had thought to be mouth ulcers were blood clots. I was bleeding out of every open crevices in my body...literally. Mum and I went straight to the hospital. I was bleeding a lot by this time and was given three bags of platelets early as I wasn't due them until the following day. It was pretty stressful and we got home very very late but eventually, the bleeding settled. It was a pretty frightening experience and not one I would like to have again.
On the Tuesday, I went to school; though I did go in later than usual. I had a good morning and break time, though nearing lunch started to feel overwhelmingly tired and a little sick. In the end, my mum had to come and collect me from school. I have been off for the past two days as I have caught a bad cold and cant keep down much. I feel a little better today however so hopefully I will be okay for school next week.
Wish me luck
Devaanshi

2011-11-11T09:50:00.000-08:00

Hello Everyone,

On Monday I went to Great Ormond Street Hospital in order for mum to be signed off ( this means she can definitely do this without supervision ) for accessing my portocath. She did perfectly as always, and after this we went home though I knew a few hours later I would have to go to Northwick Park Hospital in order to have platelets. When we got to the local hospital a few hours later, we were welcomed in by the lovely lady who works there all the time. She is so lovely... we always get gossiping. Unfortunately though, there was still some childish hostility from some nurses. This was quite upsetting as they ignored us and didnt even look in our direction. I was pretty hurt by this because I would've thought they would have got over themselves by now and as grown women, would have been mature enough to put the past behind them as I have. I haven't held grudges so I am unable to understand why they do. Evidently this is probably their own insecurities about themselves and their actions previously therefore I hope they get them sorted. I would hate for this to happen to another child like myself.
The next day, we were called with the cell counts and due to my haemoglobin being just 6.6 when it should be 11.5 - 16. This meant I needed to have a blood transfusion. A transfusion of one bag of blood takes three to four hours and I needed to have two bags. All in all, it takes approximately seven hours. I had to take the day off school to have the blood which was a shame. It was the lovely nurse again... however she was a little busy but she tried to come and say hello as much as she could which was lovely. The other nurses were the really lovely- the one looking after me came and chatted to me so I didn't get bored. So did my lovely buddy. She had a really nice haircut. It is so odd how one day it is a terrible experience at the hospital and the next is joyful.
I finished at the hospital at 5pm and had to rush home to get ready for an awards evening. I nominated my very nice teacher for an award for volunteer of the year. He does so many environmental and charity work and I felt he needed some proper recognition for all the work he does. I wore a black dress.
We got to the venue and I managed to walk up three flights of stairs. I walked very slowly and took plenty of breaks but I was so proud of myself. The people receiving all the guests were unsure of where the lift was. I had to sit down as soon as I made it up the stairs and had to have a glass of water but I still think I did pretty well. I am pleased.
There were some light snacks and then the awards began. Each nominee got called up and received a certificate. There was some entertainment of a brass band and tap dancers also. When my teacher went up to receive his certificate I clapped really hard. The evening was lovely and I enjoyed myself very much.
The next few days were filled with school, work and flu jabs! I had to have mine and it stung pretty badly and has stretched out into an enormous purple bruise. I have to have one every year from now on. eeek!!
Today I walked a little at school.After walking up thsoe stairs on the award night I feel really optimistic.
Enjoy the weekend... Im a celebrity get me out of here is what i shall be enjoying on sunday evening.
Best wishes
Be positive
Devaanshi

Sunday!

2011-11-06T03:51:00.000-08:00

Hi everybody!!
So, as you know from my last post - I was going to Great Ormond Street Hospital to have some appointments and also for my mum to learn how to access my portocath( insert the needle into the tubing device under my skin used to give me blood,platelets, medicines and antibiotics).The appointments went well,and we managed to reduce the amount of tablets I am on. I am really pleased about that due to the fact that I dislike taking tablets very much. You could be sitting down to eat your favourite meal but before this you have to take your tablets. Once you have taken them you are full and aren't hungry anymore. It isnt pleasant. My mum has also done incredibly well and managed to access me easily. We are going to practice and will be back at Great Ormond Street Hospital tomorrow for mum to be signed off. I am so proud of her. She did really well and it didnt even hurt me!
Hopefully, after tomorrow I will be able to goback to school properly as I took a few days off at the beginning of this week not just because of appointments but simply because I felt under the weather.
My breathing is still quite breathless and I do have to sit downand catch my breath a lot, even if I only walk 8 metres or so however... I am still going to keep moving as much as possible in order to build up my strength.
Finally, I hope you enjoy the rest of the weekend ...especially downton abbey and xfactor.
Remember, happiness within comes from happiness outside- make someone smile today
Devaanshixx

2011-11-01T01:16:00.000-07:00

Hello everybody,

I hope you all had a nice half term break. I certainly did. I went and saw horses and dogs in the country, they were adorable. I really enjoyed myself. I also started a little bit of my christmas shopping because then I don't have to brave the last minute rush.

Unfortunately, I am feeling a little unwell. Yesterday I was supposed to have my flu jab but unfortunately, because I was feeling unwell... my neutrophil cell count in my blood was too low. Im not feeling great today... and it can be really bitterly cold outside; winter is definitely on the way. Tomorrow and Friday I have to go to Great Ormond Street Hospital for clinic appointments and portocath accessing. Hope I feel better then.

Best Wishes

Devaanshi

Smile at the world

DIWALI!

2011-10-26T00:38:00.000-07:00

Hello everybody...
HAPPY DIWALI!!!
I hope you all have a wonderful day. Today I am planning on going out with my family and then we shall go out and eat this evening. Also, a big Good Luck to my gorgeous sister, Tejal who had unknowingly and coincidentally booked her driving test for today! Best of luck to her... She is the most amazing person. Fingers crossed for success.
I would like to remember special people who aren't with us today but who were always there and supported us throughout all trials and tribulations. We miss you Ma, Harry and hope you both watch down on our family today in the hope and happiness we live in.
Finally, I hope everyone is full of happiness and enjoys the day.
Devaanshi

2011-10-21T09:22:00.000-07:00

Hiya everyone...
So, today I had to come home a little earlier due to chest pain. I had a few minor sharp pains in the morning however they were not really bad so I just ignored it. I had biology and was fine when we did an experiment. We are working on different types of light and how plants grow when exposed to different colours. I then had mathematics and I was really pleased as I understood all of the work.We have a test in the upcoming term so I will have to revise. After break time, I had food technology however I was unable to get my ringbinder therefore I did some catchup work in the library, My lesson after this was English, and I had to do a speaking and listening assessment. I was prepared with a powerpoint and was really proud of myself and I stood up when presenting this. I am so tired and usually am in my wheelchair but I didnt think it would be right if you cant stand and make eye contact with people properly. Anyway - I got a lovely applause and got a grade A. Hopefully I will be able to do good work later on in the future and receive grades such as this. For lunch, I had a jacket potato with beans and salad. It was very welcome as it is so cold. Freezing outside. I hear it is going to snow soon so it is good to have a hot meal in the day rather than a packed lunch... it'll prevent you from getting unwell. Towards the end of lunch... I started getting more chest pains. They got quite severe and I went to the medical room. My mum came in and gave me some extra morphine and I went home with her. My chest still hurts but I have been sitting with a hot water bottle all evening and its not as sharp anymore. Since we have half term... I have nine days to rest and recuperate. Hopefully I will build up enough for me to go back to school without an infection. These holidays we have quite a few big religious festivals such as Diwali, brothers and sisters day. I also have platelets tomorrow and hospital on the 25th and on the day of Diwali, the 26th. Hopefully these will soon be out of the way for us to enjoy the festivities. We may go and watch the Diwali fireworks.
Have a warm evening,
Devaanshi
PS. Thank you to all those who supported the staff who rode to Brighton from London in order to raise money for Great Ormond Street Hospital. All donations are grateful so if you are able... please can you go onto
www.justgiving.com/devaanshifundraising

2011-10-18T12:22:00.000-07:00

Hello World
After my stay in Great Ormond Street Hospital ... I am out after a pleasant surprise. On the day I got there, Dermot O'Leary was visiting the ward I was staying on and I was soooo pleased as I got to meet him. He was really nice and friendly.After three steroid filled days -.. I am in some pain and my muscles are aching so I have had to take the day off school. Hopefully I will make it in tomorrow. All my taste buds are messed up due to the effect the steroids have on me and I am finding it very hard to find food that appeals to me - though chocolate eclairs never go amiss! GOSH have informed us that all my family and I need to have to flu jab so I am due to have mine next week if I am well enough. Hope my neutrophils will be up in order for me to have the jab and prevent all infection.
Fingers crossed for the neutrophils and the foodie aspect.
Devaanshi
Stay Smiling

H

2011-10-12T10:41:00.000-07:00

Hello Everyone...
I am ashamed....I have seriously been neglecting my blog and am feeling terrible about it.
I have so much work to do... who knew the GCSE years could be so busy. I underestimated it ... when everyone said there was a lot of work i thought they were exaggerating! Homework is always waiting to be done - there is always something to do.
Last Friday, after school, I had a really sharp pain in my chest. We were just getting in the car outside my school and all of a sudden, I had frequent sharp, painful stabs in my chest. I couldnt even sit up straight. It was hard to breathe aswell so an ambulance got called. The people from the ambulance were really lovely and helped me stay calm. After an hour and a half or so - the pain had slowly subsided however I still had to get checked out at the hospital. I had an xray and it showed a little more deflation of my right lung. Since then however, I have been back at school and have a little more oxygen than usual and get breathless really quickly. I am going into Great Ormond Street Hospital tomorrow to have steroids so hopefully, once ive had them and the side effects have worn off ill feel much better.
Hope to see u after the 4 days of GOSH
Devaanshi
Smile for life is a lovely thing

Nower Hill Bike Ride

2011-10-01T12:10:00.000-07:00

Hey Everyone
This is a super quick post. My teachers are doing a bike ride to Brighton from London, Please donate online to my cause. It will make a huge difference. The address is justgiving.com/nowerhillridesagain. I will be outside my school tomorrow to see them off.
Your donations will be much appreciated.

Devaanshi

2011-09-29T13:07:00.000-07:00

Hello Everyone

Sorry for not blogging sooner however I have been bombarded with loads of GCSE work. I had some chest pains this morning and throughout the day but luckily I was able to manage a full day at school. Yesterday was Dushyant's birthday and we had an amazing day apart from the fact that I had to have platelets. They took ages as usual. My mum had called them early in the morning asking if it was okay for me to have the platelets at lunch time so I could go back and do my assessment. But as usual there was no doctor free to canulate me and then even though the nurse went to get them it was over an hour before they put them up. The doctor who canulated me hurt me so much and I bled onto the bed.
We were so delayed mum couldn't go and collect my brother from school. It was all so upsetting,firstly I missed my assessment and then we would never have been able to pick up Dushyant from school. Luckily my dad went from work. Isn't it great we are not in a one parent family otherwise my brother would have been left crying at school. Northwick Park as usual don't give a damn!
I have two assessment's tomorrow. Hopefully my chest pains will go by then because I really can't afford to take time off. I don't want to fall behind.
Fingers crossed all will be well.

Count your blessings one by one.

Busy Busy Busy...

2011-09-21T10:08:00.000-07:00

Hi everyone,
As I have returned to school... I am up to my neck in work. There is an awfully large amount of work to fit in in such a short amount of time. I am getting tired at the end of each day... but apart from when I caught a cold earlier this month, I am spending the whole day at school. It is hard to get around sometimes... I have lots of science lessons each week and there is no way to get there apart from a small flight of stairs. It has been said numerous times that the site supervisors would come and help with the wheelchair since last week... however they never are there. We have to wait for someone to get hold of them ... I thought that maybe as they have my timetable they would be able to sort it out. Today I got to my lesson and there was only 20minutes left of it. I don't want to miss out on my education. Hopefully - tomorrow something will be sorted.
Last night I had platelets. I was feeling tired so it was quite good timing. Thank God I have them every 8 days... when I was really unwell- they were getting so low I had to have them every 6 days. I have them after school aswell so it doesn't really affect my education. Today I felt like one of the school rooms was rather stuffy - so I had to sit outside for a while but I did feel much better afterward.
Take Care
Devaanshi xx
I learn as I live...

2011-09-16T11:37:00.000-07:00

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!

2011-09-10T22:47:00.000-07:00

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

2011-09-01T12:34:00.000-07:00

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

2011-08-25T05:01:00.000-07:00

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

2011-08-25T04:57:00.000-07:00

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

2011-08-25T04:37:00.000-07:00

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

2011-08-25T04:32:00.000-07:00

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...

2011-08-24T16:00:00.000-07:00

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

2011-08-18T01:17:00.000-07:00

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

2011-08-15T01:18:00.000-07:00

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

2011-08-11T11:06:00.001-07:00

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...

2011-08-08T01:03:00.000-07:00

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

2011-08-06T13:00:00.000-07:00

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!

2011-08-03T13:52:00.000-07:00

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

2011-07-30T01:49:00.000-07:00

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!

2011-07-29T01:16:00.000-07:00

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!

2011-07-27T11:41:00.000-07:00

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

2011-07-22T12:16:00.000-07:00

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

2011-07-22T11:43:00.000-07:00

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

2011-07-20T12:43:00.000-07:00

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

2011-07-16T10:12:00.000-07:00

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

2011-07-14T09:07:00.000-07:00

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

2011-07-10T12:47:00.000-07:00

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

2011-07-07T14:48:00.000-07:00

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.

2011-06-25T02:35:00.000-07:00

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

2011-06-16T14:27:00.000-07:00

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.

2011-06-10T12:11:00.000-07:00

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

2011-06-08T11:07:00.000-07:00

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!

2011-06-06T22:27:00.000-07:00

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!

2011-06-06T13:54:00.000-07:00

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

Hi

2011-06-02T09:07:00.000-07:00

Hello Everyone
Today has been a relatively good day, I went out for a little while. I got very tired.I am still working on the international evening which I want to do for GOSH.I have lots to be getting on with.
My sister said that I can have a dog again in the summer holidays. I am very excited.The sun is out and I feel good.
I am trying to stay positive. Tomorrow I am going my friends house. Hopefully it will be another good day.
-Devaanshi

TIred!

2011-06-01T13:47:00.000-07:00

Hi Everyone,
I am very tired today. I haven't been sleeping very well for the last few days. I am a bit worried about how things are going to go since the dreaded news of no lung transplant. You see I would quite like to know how long I have left. I have just realised that there are so many things I want to do.
I am sure i'm not going to go very immediately but I can't help thinking about it, I am determined not to feel sorry for myself there are so many other children in my shoes.

I am having loads of chest pains and am needing more pain relief than I did before.However I am not in my wheelchair nearly as much. I even went to Brent Cross Shopping Centre without the wheelchair and even though I was tired. I did not feel as breathless.

Also my mum had a call from the community nurse,She said that my head of year had called her and she was going in to discuss me and my health. It annoys me because my head of year isn't at all helpful and I as do, my family feel that she is not a very nice person. She once told me that my mum and I should learn to take instructions, and then on another occassion she stood with the PE woman ( Ms Robinson) who questioned my bonemarrow transplant and suggested i was lying and tried to intimidate me. They were so horrid to me. Just because I am the child. Miss Cripps may have forgotten what she did and said but i certainly have not and nor have my family.Thats why we dont really talk to her. My parents say that I should not let her get to me but I have never been so upset by anyone in my life.My dad said that if she can do this to someone who's life is not certain then she has no conscience and will never see my point of view.

My mum had told her and Mr Warren that my symptom care team would be in contact so why did she feel she had to involve herself and start making contact behind our backs. Maybe she thinks that I have made up my health issues. My parents are now looking into making a formal complaint to the department of Education about her.

I have so much going on, I try to keep away from these types of negative people. Especially when she couldn't give a stuff whether I was alive or dead. Luckily for us the hospital contacted my mum.
I hate school because of her. I know she bullied me in the past. I am no longer scared to say so.After all what do I have left to lose.

I hope I haven't depressed you too much.
Take care
Devaanshi x

All day at School

2011-05-27T11:33:00.000-07:00

Hi Everyone,
Today I spent the whole day at school. I had a good day overall. I enjoyed my english very much. I had a heart to heart with Miss Leigh it did me good. I hope I haven't depressed her too much though.
I am still in my wheel chair but I don't mind so much anymore. It gives me the rest I need.
I have started some new medicines and am hating them. I am also trying to organise a international evening. We are going to have it at my school. I will keep you posted on the progress of it.
I hope you all have a good evening
Devaanshi xx

My Life

2011-05-24T23:09:00.000-07:00

Hello Everyone
Once again I am starting with an apology for not updating my blog. This time I know it's been ages. I was quite unwell for several weeks. I did not manage to get to school a lot and have been very tired and out of breath.
I spent four days last week at Great Ormond St for my regular dose of iv steroids. I had a blood and platelet transfusion whilst I was there to see if my energy levels increased.I think it has worked. I'm still very tired but not quite as breathless.
I am now in my wheelchair very often,which is a bind but at least I can get around and go to school more.
I discussed having riding lessons with my haematology consultant. He is the best in the world by the way! He said I could go but I had to wear a hat and not fall off. He makes me laugh.
Then we had some not so good news. My respiratory consultant said that they had a big meeting with all the experts and it has been decided that I definately cannot have a lung transplant.
It's been such a blow. The transplant was my only hope. I am going to make the most of my life. After all as my mum says I could be here for years and years. It would be stupid if I just didn't do anything with my life.
I would you like you all to know that I appreciate you all following my blog and please continue to pass on the awareness about donating blood,bone marrow and organs.
It is the one thing that means so much to me. I would not be here if my brother had not have given me his bone marrow.
Remember there is another child waiting in vein for a donor.
Please continue to read this blog and support my cause.

Devaanshi xx

2011-05-05T11:26:00.000-07:00

Hi everyone,
I am ill. Very ill. Last night I had a temperature of 38.8 and had to go to the hospital. The doctor said that it was likely that it was the start of a viral infection. However, only two weeks ago I had a chest and line infection. I feel really weak in myself and am coughing so much that my chest hurts.I've lost my appetite a bit and have just tea in the morning, a little lunch and a light dinner. I keep being sick whenever I eat or drink anything but today I wasn't sick as much as yesterday, When I had a blood test at the hospital yesterday, my platelets were 11 and they took a crp ( shows if you're carrying an infection - should be between 1 and 8 )and that was 57. I have been in the hudreds with a crp before so it wasnt much of a surprise for me. We made an agreement that if I feel worse I have to go back to the hospital to have antibiotics. I have lain in bed all day with a blanket, tv remote, a cup of tea and a hot water bottle.Hopefully I will be better. My mum is back from India tomorrow so I am really happy because I have missed her so much. Thank you,
Devaanshi x

2011-04-28T01:38:00.000-07:00

Hello,
Unfortunately, after all that lovely weather...it is getting chillier and wetter. I am so disappointed however the burst of summer was better than nothing. I am still using the oxygen all night every night. Though I just use 2 litres of it, I feel much better in the morning and I tend to sleep through the night rather than wake up a lot in the night. I had a bit of a problem the other day as both sides of my chest were hurting. I went to the hospital and got checked out. They said it was probably nothing and when they listened they just said i had crackles however that is normal for me so I wasn't too worried. I went home and took sevredol and paracetamol and i feel so much better. My manual wheelchair came yesterday and we tried to take it out however our pavement is rather badly laid and it was hard to push the chair.
Today I have platelets so hopefully they will run smoothly. Hope the day goes well -
Devaanshi x

2011-04-23T03:38:00.000-07:00

Hello...
Sun Sun Sun! I am enjoying it so much. My breathing has been a little shallow and I now have two litres of oxygen per night. I currently have a chest and line infection and am currently on antibiotics. I feel perfectly well however so it is a bit annoying that I have to go in to have them. During the past week, our friends from Great Ormond Street Hospital, Helen and Toby came to visit us. We had a really good day. Though my breathing has been a bit shallow, it is not restricting me from going out and enjoying the sunshine too much. I have been on school holidays and am due back at school on Monday. It is going to be hard to get back into the routine of getting up early again.
I have been trying to eat healthy snacks instead of chocolatey snacks as I have put on quite a lot of weight. I am a healthy size now and do not want to gain or lose any weight.

I hope all are okay
Devaanshi Mehta x

Do a good deed to help someone every day - That person will remember

2011-04-11T15:12:00.000-07:00

Hi Everybody,
I am once again truly sorry that I have not been updating my blog. I came out of Great Ormond Street a couple of days ago after having my six weekly steroid dose. For once, surprisingly, I am not eating as much as I usually do with steroids. I am finding it hard to eat heavy foods such as my usual home made curries and chapatti's. I was feeling pretty down and upset; rather in a bad mood as soon as the steroids started however these feelings are common side effects of the drugs and I am feeling much better now. The sunshine helps too - I cannot believe it is sunny in London for once! Actually, better not speak too soon as it did rain lightly this afternoon.
Yesterday it was my sister's birthday and she turned 20 years old. Though she is currently in India, we celebrated her birthday here by having a meal out. It was an enjoyable evening and we had a good time. Today, I went out to Asda and bought some lovely food...healthy food for once! We got mangoes, vegetables and ice cream! This afternoon, we made rice crispy cakes but I had a little hiccup and my breathing didnt feel so strong so I had to sit down. I do take to having oxygen quite a lot now and tend to have a litre a night. I am hoping once the steroids wear off I will feel much better.
Tomorrow I am due platelets and hopefully all will run smoothly.
Good Evening
Devaanshi x

2011-04-03T12:14:00.000-07:00

Hi Everyone,
I hope you are all alright. I haven't been too well over the last 3 weeks. I have actually only just finished my course of i v antibiotics yesterday and i am due to go to Great Ormond Street Hospital tomorrow for my i v steroids, I did however manage to get to school last week for most of the week. I am determined that i am going to beat these silly infections.

I am in good spirits today because India beat Shri Lanka in the cricket world cup yesterday, It was an amazing match.

My platelets had to be given to me early,I usually have them every 8th day but I had to have them on the 5th because my platelet count was so low.I think it is because of my infection but Iam not sure.

The local has been ...well the local. I am tired of them. Most people there are really nice however there are still those who try and be sly, but I'm so used to it now. One of the mum's of another child told us she didn't know how we put up with them because her child is now thankfully in remission.She hated the way the hospital staff used to treat her at times and was glad she did not have much to do with them anymore. So many of the patients that we come into contact with seem to say the same thing. Oh well ,some people never learn.

I have been on oxygen more now. It's gone back to every day, and I need my morphine more too. I seem to be getting chest pains every day again........but since we are going to Great Ormond St tomorrow I'm hoping my doctor can wave his magic wand and make things better for me again.

Bollywood night was a bit of a let down. I managed to take part in the fashion show part of it: but couldn't sing. I felt quite ill and had to go home before it ended.

Please take care and enjoy your week ahead.

Whilst my life is far from perfect. I want to think of those less fortunate than me and make a difference. See them smile.

2011-03-20T12:03:00.000-07:00

Hello Everyone,

This weekend has gone pretty slowly for me. Yesterday, I went out and bought some revision books. I could only go to the local shopping centre however, as I was feeling pretty exhausted. I think I may need a blood transfusion soon. I have platelets tomorrow and hopefully, I will feel a bit better by then. Everyone has been saying that I look kind of pale recently and I feel significantly weaker than usual. I suppose it doesn't help that I have a cold. Today, I just relaxed. I did some light revision this morning, watched t.v., listened to music and ordered pizza. I did need a day just to rest and recuperate though.
Tomorrow I have school so I must bid you all goodbye.
Have a lovely evening
Devaanshi x

Dont let one moment of sadness make you forget a lifetime of happiness

2011-03-18T11:33:00.000-07:00

Hi...
I am truly sorry for my lack of posts during the last week. I wasn't very well and then I was having a few problems at school.
So... a couple of weeks ago, some nurses came in to school with my palliative care CNS from Great Ormond Street Hospital, my mother and I joined them and we all had a meeting at my school with the woman who is in charge of pupil support who was constantly saying she had another meeting as if ours wasn't improtant enough. But luckily my palliative care nurse helped me when I got a little upset or couldn't get my words out properly.
We had organised the meeting as I felt really upset. I was constantly being asked why I had a medical pass and kept being told to hand out books and stopped when I was inside school.One teacher also assumed that I was lying and accused me of not even having a medical condition. It really hurt my feelings as I dont make things up. I know some teachers who are new may not know, but I always understand that so I let it go. If they have seen me before however, it upsets me. I think that teachers should talk TO us rather than AT us and listen to US.
We had the meeting; on the whole i think it went pretty well- I explained how I feel like no one listens to me or acknowledges what I am saying.I am asked a question and then when i try and reply they have lost interest and don't listen.
Even after saying this I still feel my head of year doesn't listen. I recently spoke to her and she kept over riding what I was saying.She didn't accept that I had a valid reason to get upset and instead told me that being sworn at by another person in my class was their way of putting up a wall against me.I thought swearing was unacceptable no matter what.
I don't understand why she is always trying to undermine me. I think we should all a speak in a civilised manner.Its not a competition. That is what my parents taught me anyways. I always feel like she is trying to push the fact that she is a teacher and I am nobody. I know she doesn't like me very much and always manages to make me feel alone.However during parents evening, I realised that all of my teachers do indeed like and care about me,they said some really nice things about me - It is pretty unfortunate that one or two think differently and feel that they have to dominate their presence.I just hope that any promises that were made during the meeting will be carried through. Watch this space.
Last Friday I went to Great Ormond Street Hospital for my consultation. During this, we agreed that the steroids seemed to be working and that for now, the lung transplant is on hold. The doctors are really happy with my progress. I am really happy with that as I was apprehensive of the idea of a lung transplant.
You will be glad to hear that I have also been doing mostly full days at school. I do get pretty exhausted in the afternoon when I come home and have a tendency to go to sleep for a couple of hours just to recuperate, but if it means a whole day at school then so be it.
I desperately want to do well at school.
My hospital trips weekly for platelets have been going pretty well and things have been running smoothly for the past few weeks.
Due to the problems at school unfortunately, I had to have oxygen for the whole night all nights this week even though i hadn't needed it for 3 weeks. I hope all will be well soon.
Have a wonderful weekend
Devaanshi x
I want to be the person you don't look at when I first enter the room.
I want to be the person you miss when I leave.

2011-03-03T10:40:00.000-08:00

Hi everyone,

Today, I had the day off school. This morning I had an appointment at Northwick Park Hospital and this afternoon I had an appointment with Harrow Wheelchair Services. I only had a few hours in between the appointments so it was kind of pointless for me to go into school between. As soon as I would have got there I would have had to leave!

This mornings appointment went really well and this afternoon at the Wheelchair Services Centre, it went even better. My wheelchair should be ready in four weeks time, though a few adjustments have to bed made to our home to make it a little more ' wheelchair friendly'. I am so pleased as it will make my life so much easier.

It was just my mum and I today as my brother was at school, my sister at university and my dad at work. It was nice to spend some quality time with my mum - even if we had many appointments to go to.

Today I was rather energetic. I didnt get tired as much and my legs didnt feel as though they were about to break afterwards. I am so glad that I am making progress. I really feel like step by step, I am building my health up.

Best wishes

Devaanshi x

Steps. Life is full of them. Big steps. Small steps. Steps back. Steps forward. Steps up. Steps down. But each step leads to another. Remember that.

2011-03-01T08:58:00.000-08:00

Hi everyone,
After spending the half term holiday break mostly in hospital, I was glad to be back at school. Yesterday, I spent the whole day at school and even carried my own bag! I did get a little more puffed out than usual however carrying my bag by myself was a big milestone for me. I am really proud of myself. I came home and went straight to sleep. I woke up rejuvenated and I felt so much better ding my homework rather than feeling tired and not wanting to do it.
Today, my breathing was quite fast and I could even sometimes feel my heart beating very fast. I also keep forgetting to take my medicines. I remember I have to take them, but then something else enters my mind and I go off track. I must remember to take them in the morning but I also dislke taking them as they fill me up. I hate taking them but what can I do.
Today, we discussed our GCSE options and I have definitely decided that I will do History for GCSE. It is one of my favourite subjects.
Today, I felt pretty exhausted during school. Tired. The day just seemed to go on forever. I organised some more fundraising activities though, and im organising a fashion show. I am looking forward to it.
I have homework to do now but I wish you a good evening,
Devaanshi :D

2011-02-24T06:29:00.000-08:00

Hello world!!!
Last night I unfortunately didnt sleep much again due to my painful ankle. I have been taking morphine a lot though now which is helping. I was also unable to go to the support group training course as I couldnt walk. Thank god they have reserved me a place for next time. I am feeling quite tired today and am finding it a little hard to breathe or inhale a large amount of air. I also am starting to get a little cough so I am going to just stay warm before I can get a cold.
So far today, my brother, mother and I have made a batch of cupcakes, ultra mini cupcakes and one big cake. It was so fun!They look a little unprofessional but oh well. We tried. We burnt the mini ones a little and they are more like biscuits but they taste nice.
My mum also made macaroni hot pot which I am about to eat now. I am still pigging out by the way!

Love
Devaanshi

Smile for the world, and the world will smile for you

2011-02-23T11:45:00.000-08:00

Hi everyone,
I had a rough night last night. I wasn't able to sleep at all. My ankle was really hurting as I had walked briskly a couple of days ago and then I felt something twist. Ever since it gradually got worse but last night I hardly slept...the pain didn't go even after having morphine! I went to the hospital today and have found out that it is sprained. I now have this big bandage thing on it to keep it supported and they said to keep moving to a minimum; only twist my foot now and then. It is really annoying as I am unable to go out. I did want to go out today but as I was at the hospital for the majority of the day, I couldnt.
My health otherwise however, is relatively okay. I am having a little trouble breathing and have to keep making myself yawn to get air in but I am proud to say that I havent used the oxygen for quite a few days. I will use it if I need it but for now, I believe things are on the up!
As I will be house bound tomorrow, I am going to try and convince my mum to bake a cake with me. I can sit down and work right? I love baking...it is sooo fun. As we dont eat egg however, we always have to find an eggless cake recipe before we go and buy the ingredients.
Hopefully we will make a scrummy cake tomorrow,
Night night
Devaanshi x

At the end of the day, it is your family who help you through

2011-02-22T08:12:00.000-08:00

Hi everyone,
Due to my steroids, I am eating my parents out of house and home. I just eat, eat, eat! Today, my friend, Sarah came round and we tidied my room. I can't believe I finally got it done!
I am feeling bloated quite a lot however I think that this feeling is just because of the steroids taking effect. I am also feeling achy and sore but no where near as much as I have felt previously when I have had steroids. Whilst I was in Great Ormond Street Hospital, I had a lung function test and it said that my lung capacity has gone up from 28% to 30% which is an improvement. My next dose of steroids is in 6 weeks instead of 4 weeks too.
As I have attended a support group for teenagers with long term illnesses in the past, I decided I would apply to help run it and become a volunteer. Thankfully, I got the place and am off tomorrow for a two night stay in Reading for the training. I cannot wait! I am a little apprehensive of staying by myself though. I just hopethat they have enough food to curb my hunger! :D
Will blog again and let you know how it goes,
Wish me luck
Devaanshi x

Grab each opportunity that life gives you for it may never come again.

2011-02-20T11:57:00.001-08:00

Hi,
I came out of Great Ormond Street Hospital after steroids yesterday evening. I am always sooo hungry but unfortunately it feels as thought there is not enough food to satisfy my pigginess.
I have had about seven meals today and am still hungry...

:)

Tomorrow my friend is coming to see me at my house and we will slob about and pig out together. Hopefully it will be a day of Rest and Relaxation

Devaanshi

2011-02-15T10:04:00.000-08:00

Hi everyone,
I have been going to school for whole days for the past week! I am so proud... I feel as though I have reached a milestone!
School is the same as ever however Bollywood Night is coming up... and I have decided to do a short routine to perform with my best friend, Ashna.
The time has come yet again, that I go into Great Ormond Street Hospital for steroids. I am due to go tomorrow but it is not yet fully confirmed. I dont mind going to GOSH but it is hard to walk and i get achy and put on loads of weight which isnt ideal.
I will be in touch as much as possible
wish me luck
Devaanshi !

2011-02-09T13:10:00.000-08:00

Hi everyone!!!
I have been at school soooo much recently. Am very proud of myself.
School is as same as ever.... but am having a great time with my friends!
My mum and brother are coming back from India tomorrow and I am going to pick them up from the airport and am soooo excited.

Good evening,
Devaanshi

A POEM I WAS RECENTLY INTRODUCED TO

2011-02-05T02:56:00.001-08:00

It is said that love is blind but friendship is clairvoyant.

People come into your life for a reason, a season or a lifetime. When you figure out which one it is, you will know what to do for each person.

When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally, or spiritually. They may seem like a godsend, and they are! They are there for the reason you need them to be. Then, without any wrongdoing on your part, or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away. Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered. And now it is time to move on.

Then people come into your life for a SEASON, because your turn has come to share, grow, or learn. They bring you an experience of peace, or make you laugh. They may teach you something you have never done. They usually give you an unbelievable amount of joy. Believe it! It is real! But, only for a season.

LIFETIME relationships teach you lifetime lessons: things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, love the person, and put what you have learned to use in all other relationships and areas of your life.

2011-02-05T02:55:00.000-08:00

Hi everyone,
The other day at school, I unfortunately got knocked over and then had some really bad breathing problems. They had to call an ambulance which was reallyyyy embarrassing. Everyone saw!
The ambulance took me to A & E and no matter how many times I told them that I never go to A & E, I go straight to the ward. They just didn't listen to either myself or my sister who is 18. I was very disheartened as one of the ambulance people even said " well, looks like your ward thing didnt actually come through" - i didnt appreciate people saying that to me especially as I was feeling unwell.
Thank god the doctor saw me and told the ambulance people that I should go straight to the ward.

School is getting on my nerves quite a lot of the time I am there. I don't look forward to going anymore. Teachers, peers and the people at the top tend to make me feel really bad.I feel as though everyone is pushing me to use the wheelchair. I was told by my consultant at Great Ormond Street Hospital that I should use it IF I need it. Not that I have to use it every minute of every single day. I know people like a set routine but I have to feel happy and independent right? A 14 year old girl should not feel uncomfortable at school and as I do already, it is highly unfair to keep on pushing me to use it. Obviously I am managing without it at school as I do tend to do quite a lot of full days now.
Mostly , I feel like people are patronizing me. Some people talk to me like I am stupid and some treat me like I am taking advantage of any stand ins I get. My form tutor told me to get some passes for myself and the friends who are with me all the time and I did so. I was very agitated as I was pulled up on it. It certainly didn't look very professional to me if my form tutor tells me one thing and another teacher tells me another. I was not to blame at all and it came across to me that people were implying that I had done things deliberately behind their back when my own form tutor told me to do it. As if I was doing it off my own back.
It is a shame as I had been told previously about the school and even got a pack when I started in year 8 however I do not believe, as do others, that a lot of things that are claimed to be done, are.

Oh well, lots of people walk through our lives. Some you like, some you don't. You meet all kinds of people in this world. Thank god some don't stay in your life forever.

I have been feeling quite breathless recently and have not been able to do as much as usual. However, I haven't had much oxygen so I feel quite good that I am starting to manage without it. Today, my friend is here and we are definitely going to have a great time!

Devaanshi x

2011-02-02T02:13:00.000-08:00

Hi everyone,
I went to school for a whole day yesterday! I am very proud of myself and I didn't even take a break. I was exhausted afterwards but I feel a sense of accomplishment now. Hopefully this will definitely happen from here on.
I had platelets yesterday also. I was still upset about the situation where I was told I could die. Thank God nothing was in the new test results. I think sometimes people are a bit too quick to speak about what could happen when there is a 50/50 chance.
Anyway, because I had to have bloods taken from my portacath a few days ago, I had decided to keep the needle in. Unfortunately, in the middle of the platelet transfusion my portacath stop working so we put a cannula in instead. It was only because I had kept it in for a little while so it had come loose but it should work perfectly well next time.

Wish you a great week,
Devaanshi Mehta

Life is too short... live happily and keep smiling.

I AM SO TIRED OF PEOPLE TELLING ME I MAY DIE! I ALREADY KNOW!

2011-01-29T21:50:00.000-08:00

Hello Everybody,
I hope all of you are okay.
I have not been blogging for a few days because as I said in my previous blog I am not feeling too well. I have a horrible cold and had to go to the hospital the other day because I felt so unwell. They took cultures peripherally (which means by putting a needle into my vein and extracting blood from there). I don't like my portacath accessed unless it absolutely has to be, because sometimes it hurts me or doesn't bleed back and they have to try again.
The doctor at Northwick Park who was seeing to me told us that the blood test had revealed that something had grown in the cultures they did and I would have to go back and have another test done from my port. I don't like it, I just went with it.She told me I could die.
I know that I am more vulnerable than the average child, but i wish people would not tell me that i might die.

I am on pallative care! I'm not stupid ! I know what can happen to me, but i try and put it to the back of my mind. I don't want anyone to tell me that I may die.. I don't want to die.

I feel scared at the thought of it.Just because I am 14 they think I want to know everything. Sometimes I wish people would think before saying these things to me.She could have said that things were serious and there was no other way, I did not say anything to her at the time but I told my dad and my sister when we left that I was scared and I felt very upset.
I expect the hospital to be rude. It's okay because I chose not to move to Watford because it is far and if I do get really sick I want to see my brother and sister's incase they don't make it to Watford before I finally go.I have given this so much thought.
I would like everyone I know to know; that I know that life is not certain for me,I don't need to be reminded of that. It's so insensitive. I am 14 not 45. I can't face it.
At Great Ormond St nobody says that i will die if I don't do things. They say do whatever you like. They even agreed to me having a dog even though it is a high risk of extra infection on top of my low immunity.
I am tired of this.
My dad never says anything to them because he says that there is no point reasoning with the unreasonable.Doesn't make it better for me though.
I miss my mum .I want her to come back now.

I will blog again in a day or so.
Devaanshi xx

2011-01-25T05:02:00.000-08:00

Hi guys,
Just a short message to say I won't be blogging for a few days as I am ill =(
I have a terrible cold and have practically dragged myself out of bed to write this message.
Lots of love
Devaanshi x

2011-01-21T08:46:00.000-08:00

Hi guys....
Recently, I have been at school for the majority of the time!!! I am sooo proud of myself. Though I still get tired - I have been persistant with going and have even done some full days!
I had to have oxygen all night last night but woke up feeling rested and refreshed. I am truly feeling pretty great.
I miss my mum and my brother, who are both still on holiday in India however I am having a fantastic time with my sister Tejal. She is really looking after me and has introduced me to all her friends who are really nice to me too.
I have put on weight which is great... I feel much more healthier with it.

I must love you and leave you but have a fabulous weekend

Devaanshi
=D

2011-01-17T00:18:00.000-08:00

Hi guys,
Yesterday, I had a full day! I woke up feeling a little lethargic so went shopping with my sister. We also went grocery shopping and bought loads of fruit and stuff. I am trying not to eat so much junk food so our house is full of fruit and veg.
Towards the middle of the day, I was very tired. It was probably because I was due platelets. I had decided I was going to have them in the evening as they hadn't arrived yet.

After some rest and relaxation at home I had to go and have platelets. We waited for about an hour for someone to come which was a bit annoying. However, we met a doctor who used to work on the ward who is really nice.
When I was having a cannula put in ( a little tube that goes into a vein when having transfusions ) I held my sisters hand so I could squeeze it if it hurt. She ended up squeezing my hand as she feels a bit sick around needles and hospital stuff.
As I have piriton with my platelets I always feel really sleepy as soon as they put it intravenously into me so was ready just to sleep there and then. After a short rest, we went to watch a movie and have a meal... we went in the car so I didnt have to walk at all. Just got driven from door to door.
I had a really fun time.
Also, if mum is reading this... I MISS YOU VERY MUCH
Love
Devaanshi

small things generally bring the great pleasure

2011-01-15T11:12:00.000-08:00

Hi everyone,
I am very pleased to say that I am feeling so much better. My achiness has mostly gone!!! I am still very tired but hopefully, if i take things slowly I will be able to get back to normal soon. My breathing is also so much easier. I finally feel relaxed.
Today I spent most of the time at The Honeypot Spice Rack and then my dad took me shopping. I wasn't able to walk very far at all so we only shopped for an hour or so. I bought some new trousers and shoes. At The Honeypot, I ate and just chilled out. It's a very relaxed atmosphere there so I just watched the world go by. My hunger is also not so bad now. I am still hingry a lot pf the time but I am not so bad now. I have put on weight too which is a good thing as I won't feel as cold or weak.
Now, I am just taking my time with the days rather than trying to cram things in to them. I feel so much more relaxed this way.

Tomorrow, my sister is going to take me out and I am really looking forward to it. I miss my mum and brother too much though; it is so weird not having my brother running around making us laugh all the time...and my mum is always with me so i miss her ..... mummyness!
Devaanshi
x

Take each opportunity in life for they may never pass you again

2011-01-14T06:44:00.000-08:00

Hi Everybody,
I am feeling much better. Due to the steroids I had, I was very stifff and achy for the past few days and couldn't really move about. I haven't been able to get to school much and am a little worried on how much I am missing out on. I am going to ask my friends if they can bring me round some work so I don't miss out.
Being at home is kind of boring and I have nothing to do, so I am trying to get back on my feet as soon as possible. I also have the option of using the wheelchair, however I do feel rather uncomfortable using it.

Today, I am finding it a little hard to breathe. It is as though I cannot get enough air in my lungs to yawn. It feels quite uncomfortable and I may have some oxygen today if it doesn't improve.
Also, my mummy, sister and brother went to India today. They are going for a short break but I miss them already! My other sister and my daddy are here though so I know they will look after me.

I am going to sleep for a little while now just to get my body rested as I am exhausted but I will update my blog very soon.
Adios Amigos

Devaanshi x

Arguing with one fool proves that there are two.

2011-01-12T00:58:00.000-08:00

Hi everyone,
I came out of Great Ormond Street Hospital on Sunday evening after having steroids. This stay at the hospital felt really short even though I was there for the same amount of time I always am. I have a really big appetite again. I am eating anything and everything in the house!!! It is good that I should put on weight however I keep getting stomach aches and they get really bad. In the meeting I had on Friday, my consultant said that we should carry on using the steroid bursts for six months and then we will look at different treatments. I think this means that the lung transplant idea is still being thought about but it has not been decided that I will have one yet.
I went into school on Monday and used a wheelchair. I felt really concious as everyone seemed to be staring. I decided against using it on Tuesday but my body is really aching now and I feel quite stiff. Everyone was quite supportive when I used it but I still felt quite uncomfortable. I won't use it unless I really have to.
Today, I have not gone to school as my back, shoulders, legs and neck are all really stiff and achy. I couldn't sleep properly last night because I was aching so much.
Hopefully, today can be a day of relaxation and I will be able to get the rest I need.

Devaanshi Mehta

We do not learn to live... we live to learn

In Gosh

2011-01-08T01:32:00.000-08:00

Hello Everybody,
I am in Great Ormond St Hospital having my monthly dose of iv steroids. The nice man from the school came and sorted out internet access for me,so I won't die of boredom!
We had the meeting with the consultant about my lung transplant and he said we are going to continue with these monthly infusions for 6 months and then we will come up with a new plan,since I feel my breathing is better with the oxygen and steroid infusions.
I know they are avoiding a lung transplant because I am so dependant on all my blood products and the fact that I reacted so badly during my bone marrow transplant. I'm glad they are continuing with the steroids but he told us that we can only do it for six months because steroids come with their own risks.
My consultant is funny. He tries to keep me happy. I think all the doctors and nurses here are the nicest people ever.

Last night during my infusion I had a re-action to the drug and felt very unwell. My chest felt tight and my heart felt like it was going to burst out of my chest,my feet were itchy and felt swollen and the same with my right arm. It was such a horrid sensation.
Once the infusion was stopped and i was given an some anti sickness and anti reaction drug I was okay again. By then it was about 1o'clock in the night.The doctor who came to see me was very nice,but I am not sure when I finally went to sleep.
Tonight they are going to put the infusion up for longer so it goes into my body slower.
I am in quite good spirits today though because my sister and brother are coming and so are my lovely friends Sarah,Zoe and Ashna..
I hope you all have an amazing weekend.
Devaanshi x

When you feel alone and scared
Think of him next door who cannot be repaired.

2011-01-03T10:22:00.000-08:00

Hi guys,
I had my oxygen for the majority of the night last night. This morning I felt more energetic than I have been doing the past few days.
I also have a little cough but I don't think I am coming down with anything as I dont have any other ailments and I feel fine.
Today, we went out to buy some of the new puppy's things. We bought te majority of the thingsz it will need; we just need to buy less important things like toys etc. Tomorrow we are going back to pick up a crate ( a kind of training box that helps the puppy have it's own space ) and the puppy will come either tomorrow or the day after.
It is pretty unfortunate that I go into hospital a couple of days after the pup comes and don't get to spend as much time with it as much as the others. It's has to be done though so we might as well get on with it.
I have a bit of a headache and earlier felt sick so I have put on a patch that stops you from feeling sick.

Please cross your fingers as for us to get the puppy tomorrow,
Devaanshi x x x

“Watch your thoughts, for they become words. Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it becomes your destiny”

2011-01-02T02:00:00.000-08:00

Hello Everybody,

I am truly sorry that I haven't updated my blog for a couple of days; I have been ultra busy.
Recently, I haven't been having any oxygen and seem to be a little.... lethargic I suppose without it. I am not sure whether I really am lethargic or just think I feel lethargic as I know I haven't had the oxygen. I have also lost my appetite a little and am not eating as much but I don't feel unwell or anything so I am not sure why this is so.
The time for me to go into Great Ormond Street is nearing and I am dreading the achyness and stiffness that will come with the steroids. It is a small price to pay for keeping me stable so I will just take loads of painkillers and try to recover quickly and easily.
A fantastic thing that has happened recently is that I am getting a dog. We have had a look at some gorgeous Labrador puppies and we will take ours on the 5th January; I am so excited. We have lots of things to buy so I have made endless lists of what we need.

I will see you very soon,
Devaanshi x

Yesterday was the past, tomorrow is the future and today is a gift. That's why they call it the present.

2010-12-31T08:51:00.000-08:00

Hi Everyone,
Last night, I had no oxygen but felt tired and breathless this morning. The thing is, I don't know if that is how I really felt or if it was psychological because I knew that I hadn't had it. I also thought about going into Great Ormond Street Hospital on the 7th for the big meeting and for steroids. Though it is not so bad going in and everyone is really nice to me, I am a little nervous about the meeting regarding the lung transplant and whether or not I am having one for certain. And even if they say I do need one, it may take years to source some lungs or even to get on the list. I don't want my whole life to be on hold just for that one moment that may never come.

Hopefully, the anxiety will be over when we go for the meeting.

Best Wishes and

HAPPY NEW YEAR!!!

Devaanshi
x

Life is a gift... dont dwell on the time when things are bad, just think of the happy moments of life

2010-12-28T13:08:00.000-08:00

Hiya everybody,
Yesterday morning, I woke up feeling quite breathless. I was finding it hard to breath but after a while it was okay. I was also feeling quite tired but after a few hours of just relaxing and watching television I was feeling much better.
I went to the shops to buy a nice outfit for the afternoon as I was having my birthday celebration. A few friends and I were going to watch a movie. I managed to walk around quite well and bought a nice dress.
After I went home and had rested and eaten, I went to the cinema to meet my friends. We bought some food and popcorn and went to watch the movie. It was really good.
We had planned to do some shopping afterward however I was feeling really exhausted because the day had been so long and I had done so much. I went home and fell asleep pretty quickly but I had had a great time.

Last night, my nasal oxygen connecter kept falling off so I didn't manage to get much oxygen. I was aware that the connecter kept falling out which kept me awake during the night.
This morning, I woke up and didn't feel too tired so I decided to go out. We were out of the house by 9:30am as we wanted to get there early. I always go shopping early as I shouldnt be near crowds due to me being Immune compromised. As it is winter, there are lots of colds going around. I walked around for a little while but then felt sick and my legs started to ache so we sat down and had a drink and something to eat. When I was feeling up to it, we had a look around some shops but I was truly exhausted so we decided to come home. I have no idea why I am getting so tired lately. I was feeling really energetic a week or so ago but now I feel as though my energy is slowly being sucked out of me.
We had a meal and then I just went into my room to relax. I did some reading as I felt as though my body was working too hard and didnt want to do anything strenuous. Now I am just browsing the internet and lying down. Tomorrow I am just going to take the day as it comes and not push myself.

Good evening,
Devaanshi Mehta x

The aim of education should be to teach us how to think, rather than what to think....

2010-12-25T07:19:00.000-08:00

Hi guys,
Merry Christmas!!!
Today, my brother was ecstatic with the presents I had bought him. I had bought him a science kit and a spongebob pencil case with the colours inside.
This morning I felt fine but then all of a sudden I started feeling really tired. I still feel really exhausted and am just sitting in bed. I also feel a little sick and have a cough and blocked nose. It is really annoying; I hope I get better soon.
Every Christmas we eat home made pizza as tradition (we are vegetarian) so we ate it today and it was yummy!
Tomorrow, I am going to Zoe's house but hopefully I won't feel as bleurghh as I do at the moment.

Have a very merry christmas and I hope you get all you wish for,
Devaanshi x

The future depends on what we do in the present. - Mahatma Gandhi

2010-12-23T10:32:00.000-08:00

Hi guys,
This morning I woke up and felt a bit like I was getting a cold. I still have a sniffly nose and a cough. I wrapped up warm though and went shopping with Zoe.
Whilst I was outside, I didn't feel so tired and managed to stay out for longer than usual. I bought some more christmas presents and when I came home, me and Zoe wrapped them.
Whilst out I bought some really posh, expensive paper with matching envelopes. I was thinking about what potentially could happen if I needed a lung transplant and thought it may be a good idea to write letters to people, saying what I need to just in case.
I started writing them and also found it a really good way to say how I feel. I think it is important to let people know that you always knew they were there.
A little while after I came back, I got some really sharp chest pains all of a sudden and felt really unwell. I couldn't straighten up and had to go to hospital. I had a chest xray and it only showed inflammation so I was allowed to come home. I was really worried as I thought I may be in hospital over christmas.
I am due to have platelets on Christmas Day however we have organised for me to have it tomorrow on Christmas eve so that I have christmas day free.Tomorrow I am also going to Zoe's house to cook!!! I can't wait...
Right now though, I am going to have pizza so I shall love you and leave you

Devaanshi x
Ask yourself this question:

"Will this matter a year from now?"

Richard Carlson, writing in Don't Sweat the Small Stuff

2010-12-21T10:18:00.000-08:00

Hi guys,
Last night, I had my oxygen on all night and this morning I woke up feeling great! I still felt tired and got breathless but I felt much more energetic. It is great that the oxygen helps me.
I have had my Great Ormond St appointment re-scheduled for when I go in for my next pulse of steroids.
I am feeling a bit aprehensive about it though.I think we are going to find out if a lung transplant is going to happen or not.I'm trying not to think about it but now and again it crosses my mind.
Today I have tried to do some homework and i have played with my little brother. I also went food shopping with my mum.
I am going to be in the Harrow Observer newspaper for the charity dinner i hosted for GOS on Thursday so please take a look either online or in the actual paper.
Got to go now. Have a very lovely evening.
Devaanshi

2010-12-18T11:22:00.000-08:00

Hi everyone,
Todayyyy it's myyy birthdayyyyy!!!!!!!
I was soooo full of adrenaline and excitement that I hardly felt tired at all.
Unfortunately, I had to cancel my birthday party due to the terrible weather but will reschedule as soon as the snow is cleared.
This morning, I went shopping with my sister and she bought me some new jeans, ankle boots, a ring, some clips, some earrings andddd....... A REAL GOLD BRACELET!!! I did get a little bit tired and breathless and stopped a few times however my legs didn't ache as much as usual which is really good. I love my bracelet. It is sooo beautiful. I had a fab time. I am never going to take this bracelet off.... ever!
From my other sister, I got some really beautiful earrings, a little make up mirror, a GORGEOUS RING and fifty pounds!!!!!!!!!!!!!! The jewellery is sooo beautiful. I love the ring especially. It is silver and has a diamante encrusted silver bow on the top.

I got a beautifullll cake. It is cream and has fruit all around the outside border. In the middle, It had my name on it and chocolate flowers and roses. It was yummy too.

After I pigged out on pizza hut, we watched "The Sorcerers Apprentice". It was ssssooo gooood. I really enjoyed it.
My parents gave me their present last of all. From them I got a beautiful diamond ring made just for me!!! I have been aasking for one for as long as I can remember. It is the best present anyone could wish for.

Finally, thank you all for the birthday wishes. I read each one and all of them touched my heart deeply. Thank you

Devaanshi Mehta

A birthday is the day to appreciate the past, think of the present and visit the aspirations of the future.

14 at last

2010-12-18T10:58:00.000-08:00

2010-12-17T09:52:00.000-08:00

Hi everyone,
Yesterday morning, I was really tired. In the morning, I managed to go into school for a couple of hours but I did have to take it slowly as I felt a bit stiff. I left school at 11am as I was going to meet more donors at Edgware Donor Centre. I met some really lovely people there. Firstly, I met a young man called Joel Thornton. He was really kind and didn't seem at all bothered about donating. He was also O- blood group; many times of which I have had before. I then met two other men who were sitting on the chairs donating platelets. They were called Gavin Buchan and Wayne Marshall. They were both CMV negative ( have never had cytomegalovirus before and therefore do not have antibodies against it ) and every platelet transfusion I have in also CMV negative. Its amazing how neither of them had known anyone who had needed blood or platelets. They did it out of sheer good will. They were really lovely and had both been donating since they were very young. I also had a lovely conversaton about the need for people to donate and the lack of donors around the world. Finally, I met Jeremy King, who was a kind gentlemen who really understood donating.

In the evening, we had our charity dinner and raffle!!! We got to our venue, The Honeypot Spice Rack, at 6pm. On all the tables we put leaflets about Great Ormond Street Hospital, bone marrow, blood and platelets donation, pens from NHSBT, Great Ormond street and NHSBT stickers, post it notes and little blood drop bobble head stickers. The tables looked lovely and people started to come...
It kicked off at 7:30pm, with friends, family and regular customers to the Honeypot Spice Rack settling down at the tables and taking their seats. Everyone merged almost instantly and whilst walking around, I felt as though everyone was at ease. Sarah and Zoe had come to help me and we all handed out a sheet of raffle tickets to every person. After a short while, I made a nerve racking speech explaining that this event was really important to us. We want to give out the message of Blood Product, Organ and Bone Marrow Donation especially in the Asian community and how everyday lives are saved just by two hours or so every month.

Dinner was a lovely buffet or starters first and then main courses. Everyone thoroughly enjoyed it, though my friend Sarah's mouth was burning slightly as she never eats spicy food, and all went back for seconds.
I got a lovely surprise as my old form tutor, Mr O'Carroll, amd his lovely partner Ciara came. It was great to see Mr O'C again and his fiancee was a really lovely person.

Finally, it was the raffle, and though Mr O'Carroll claimed he had a knack for winning, he didn't win anything at all!! The prizes included digital photo frames, exquisite wine glasses, a set of shower creams, a hairdryer and more. It was really fun though!!!

I hope you enjoy looking at the new pictures at the blog and have a lovely weekend.
Devaanshi Mehta

A twinkling star shines through the night like a smile brightens up the day

2010-12-15T12:10:00.000-08:00

Hi everyone!!!
Last night, I had quite a rough night. I woke up with a really bad headache as well. I had a few appointments, one of which was to get my wheelchair. It is really big but I am glad I finally have it just in case I need it. I also got my new glasses today. My eyes feel really weird as my eyesight has gotten quite a bit worse.
This afternoon, I went to the Great Ormond Street Christmas Party!! It was really amazing!!
I met lots of lovely people including Tamsin Outhwaite, Calvin from Hollyoaks, Paije from Xfactor, Tom Ellis, Ellie Goulding, Wonderland and Jenni Falconer. They were all sooo nice and I took loads of pictures and got many autographs. I will post up the pictures soon.
I had an amazing time; I got a personalised picture of me and Sarah, who came with me, and had loads of pictures with the snowmen and rudolph dress up people!!
I am really tired now so I am going to have some oxygen and settle down,
Night night
Devaanshi x

Dreaming is believing. Believing doesn't have to be dreaming

2010-12-13T10:15:00.000-08:00

Hello everyone

I am sorry I haven't been blogging. I came out of Great Ormond Street Hospital on Saturday after having three days of steroids however haven't been well enough to access the computer. My steroids were still given as large doses so I haven't really felt their effect until today. I am getting quite hungry and seem to be eating all the time!!! I am also feeling really stiff and achy again. I expected this as I felt this way last time I had steroids however the feeling is still rather unpleasant.

Whilst I was in Great Ormond Street Hospital, I spoke to the psychologist about all my worries. We had a good long chat about any anxiety I was feeling regarding school, health etc. Since I have been taking so much time out of school, I am starting to worry that I may be falling behind. I do my school work whenever I am able but sometimes I am just too tired or feeling too unwell to do it. Hopefully I will be able to get a list of things to do that I can work on next time I am in school.

The psychologist and I also spoke about the worries I had regarding how to handle school and health in general. We came up with some remedies on how to avoid upsetting/ stressful situations and I am interested in how they will take effect.

Today, I just relaxed and hopefully doing this will help my body recover quicker. My mum has gotten hold of a wheelchair for me to use as I am adamant that my aching body won't keep me from school. I will have it soon and it will be self propelling so I won't have to rely on anyone to push me. I also got an oxygen tank fitted at home so that I can breathe more easily at night and as and when I need help. I am glad that it is there so I know if I need it, it is ready for me to use.

Tomorrow, I am going to try and go to school for at least half of the day if not all of it depending on how well I feel.

Have a lovely evening and best wishes

Devaanshi

Sadness. Feels like nothing once happiness can overcome the feeling.

2010-12-08T01:28:00.000-08:00

Hi everyone
Today I am going into to Great Ormond Street Hospital for steroids.
I wont be blogging for the next three days.
Have a great week
Devaanshi :D

Dont let the fog of obstacles cloud your vision of life.

2010-12-06T08:56:00.001-08:00

Hi everyone,

Last night I wasn't very well so I didn't go into school today. I have a bit of chest pain and a cough. I am getting more tired walking around too than I usually do. I just relaxed today... and am now sitting in my pyjamas and slippers with a blanket on the sofa. Tomorrow I am going to try and go into school, even if I can only manage a half day. On Wednesday I go into Great Ormond Street for steroids. Our good friends, Helen and Toby will also be there having their clinic appointment so it will be nice to have some more company. Hopefully my stay at Great Ormond Street won't be too bad.

Also, thank you so much to all those who comment. I really appreciate it and I love to hear your opinions about my day to day life. Please keep them coming!

Devaanshi Mehta x

With everyday that comes... through the hard times think of the good... you realise that the good memories outweigh the bad. Appreciate every moment for life is too short to worry.

2010-12-04T10:51:00.000-08:00

Hiiiii guys,
Today I went to the Pinner Wood Christmas Bazaar. It was really fun and good. I took my brother to all the stalls and he won loads and loads of prizes.
We then came home and planned to go shopping... but it was sooo busy we couldnt find any parking spaces. In the end we decided to have a meal out and it was yummmmm!!!
My chest is hurting for some reason and I am feeling a little under the weather. I am now just sitting down, relaxing looking at what may be my birthday outfit online. I have to be well for my birthday of course!!!
I also have to pack this weekend for Great Ormond Street on Wednesday. I know I am oinly in for three days however I still really don't want to go!!!

Wishe me luck and have a fab evening
Keep the comments coming
Devaanshi Mehta x

Life is like an hourglass... eventually everything hits rock bottom -
You just have to wait for someone to come and turn it around

2010-12-03T08:16:00.000-08:00

Hi everyone,
Today I went to school for half of the day. I first had science, which was rather good as I got a revision guide that can help me when I am not in school. I then had Latin, and that was really fun. We played this bingo game using latin words instead of numbers and though I dont know much Latin due to my not being there, I still got a few right. I missed most of my next lesson, English, as I had to talk to the head of year, Miss Cripps and the pupil support woman, Ms May. We spoke about a powerpoint I had made about my experiences and what I have been through the past few years. I also put a few pictures in with my hair just growing back after chemotherapy. As I have been bullied over my ill health by some girls in my class over the past few years, I felt it would be a good idea to help them understand. I thought it would be unfair to single them out which is why I decided that I would like to do it in front of the whole class. We were to discuss why I couldn't do it. I'm still not one hundred percent sure why I cannot do it. I will never be able to do it as the school have said no but I stand by what I think. That it would be the most effective, general method of getting those who dont understand get to know a little more about what I have been through. I felt it was a rather good idea as noone else was doing anything. I am rather dissapointed with the outcome but teachers come before students unfortunately.
I then spoke to my form tutor. It upsets me as I feel as though she never supports me or in fact our class. I feel like she just goes on what everyone else says. Today, as I was upset, dissapointed and angry with everything that had gone on, I just thought that our old form tutor was the best and I know that he would have definately stuck up for me and supported me through everything.

It amazes me how after a conversation, they tell me not to tell my friends what they have said. They want me to keep all my distress, feelings about these situations and stressful conversations I have to myself. Surely that is the worst thing anyone could possibly do. Bottle their feelings. The hospital that looks after tells me to always express how I feel about everything. I feel like they are just sweeping it under the carpet.
I am truly sick of the sayings " they dont understand" or " thats life " or " moral high ground."

I have a little cough and have some tummy ache but on the whole feel quite well. Im feeling stressed too but there is not much I can do about that.

Have a lovely evening
Devaanshi

Sometimes youve got to say yes and get on with it
even if you dont want to

2010-12-02T12:16:00.000-08:00

Hi
Yesterday I had platelets and it was really long. It depends on which nurse you have and how efficient they are that determines how long it takes. You can estimate how long it takes if you know which nurse youre going to have.
Today I went to school. I only did a half day as my body was aching really badly. I have no idea why. I managed to carry on with the day until 1pm as when I had music and drama in the seperate building. . . I used the lift. I also just sat and gave ideas and didnt have to move around much.
I go into Great Ormond Street Hospital on the 8th of December... near my birthday which is on the 18th. I hope i feel better before it.
My achiness was in my legs, ankles, wrists and arms but it now feels much better.
Has anyone got any remedies??
I will see you soon and have a nice evening
Devaanshi Mehta x

A chicken and an egg need eachother to survive... just like me and mum

2010-11-30T08:57:00.000-08:00

Hi everyone...
Back at school!! I went for a half day today and it felt really good to be back. Lately, my cough has gotten a little better however I am not 100% just yet. I will be soon though.
Two weeks ago, I made a short powerpoint presentation about my experiences to show my class. I was very careful not to put anything sensitive or gross. My teacher checked it then she passed it onto someone else to check it who passed it onto someone else. I had to wait ages to get an answer and I was the only person chasing it up. Eventually, I got told I could do it the next day however I was unable to as I was ill. This was my first day back and I was told that I cannot do it. I am finding it highly unfair that I had to wait a very long time but also that I got told yes and then later got told. I also got told one of the senior members of staff was going to come and talk to me in the library, and she never turned up. I find this highly unfair and rather rude. I am pretty upset with the way I am being treated and have decided that rather than change my method of getting people to understand me I shall not do anything at all. I am very dissapointed as I was the one who thought to do something about it anyway. Noone helped me or gave me any suggestions. I think that maybe some people are way too narrow minded and need to broaden their minds horizons a little.
I am going to start my christmas shopping tomorrow; So many people to buy for. My funds will be limited by the end of it. I am going with Sarah, Ashna and Zoe after school tomorrow as we have a half day. I have no idea what to buy for some people thoughh!!!
I am getting tired quite quickly but I am sure my friends will take it slowly with me. I am sooo excited. I love buying people presents.
Goodnight
Devaanshi x

A promise are words secured by the heart and soul

2010-11-28T01:54:00.000-08:00

Hiya guys,
Yesterday, I had to go to the hospital in the morning for my last dose of antibiotics. I feel so free. I don't have to go back for four days now. I am going to have to go into Great Ormond Street next week for my steroids as I was unable to have them when I was ill, however I am unsure of which day I have to go in on. Sarah came round and we had such a fun time!!! It was the best I've ever had with anyone in the history of friends coming to my house. We played a battle of the Nintendo wii carnival games, we decorated paper plates and made faces, we watched tv, we ate two types of pasta and lots of crisps and sweets, we went on the computer, we played monopoly and Sarah and my little brother got on really well. It was fun.
Today I woke up at 7:10am and fell asleep again. I then woke up at 9:45!!! I never wake up late.... ever. I am really surprised.
My mum is making me stay in bed all day though I am dying to go out. I'm not surprised though as I keep having coughing fits. I do feel better though however as much as I hate it, it is wise to keep me inside so the little bit of a cold I have left wont get worse.
Wish me luck in this long and boring day.
Devaanshi
x

Life is like a flower. Pick every petal of opportunity

2010-11-26T05:43:00.000-08:00

Hiya everybody

I am truly sorry that I haven't updated my blog. Unfortunately, I was admitted into Northwick Park Hospital at 11pm on Wednesday. I have a chest infection and have a terrible cough. I found it hard to sleep and it got so bad that I started vomiting and felt really ill. Mum took me in and the doctors admitted me. I have been there for two days having Intravenous antibitotics and it has been terrible. Some people at the hospital are kind of ignoring me and not even saying hello. This upsets me greatly as I have done nothing wrong. It is very childish. The kind people are being as great as ever though. Whilst there, I met the new play specialist. She is called Lorraine and has been at Northwick Park for a year and I met her for the first time yesterday. I have no idea how I must have missed her as I am there allll the time. Anyhow, she is lovely. She is a really kindhearted person and brought me lots of fun arts and crafts to do. Today, she sat with me and we made a present as it is my best friends birthday tomorrow. It is amazing.... I will post what it is after I have given it to her.

I am feeling much better, but am off my food. I try to drink as much as I can and have been allowed home until my next dose of antibiotics. After them, I will come home again and at 10pm I will go back for the last dose and then its back home for good!!!
I am soooo pleased. Soon I will be back at school and am going to hand out my birthday party invitations.
Wish me better and keep leaving your wonderful comments as I love to hear what you think.
Devaanshi Mehta

Yesterday is history, tomorrow is a mystery, today is a gift and thats why they call it the present xx

2010-11-23T09:21:00.001-08:00

Hello guys,
Today I went to school for half a day. I had art, history and a double free period. I still have my cold and keep getting headaches and have a really bad sore throat due to coughing!
I am still getting tired walking and am a little more breathless... (probably as I am ill).
Tomorrow I am going to hand out my invitations for my birthday party. I cannot wait.
I am also going to do a powerpoint presentation to my class about what my experiences in hospital have been like and hopefully that will make those who dont understand be more aware of my situation.
I went to the local hospital for my blood test in the morning and the nurse in charge was a bit rude. She first said she didn't see us when she was only two metres away and my mum has a loud enough voice,then when mum asked whether she was aware we were coming in this morning for the blood test which Great Ormond St had asked for; the nurse said yes it was at the bottom of her list. It's so frustrating I haven't done anything to them,It hurts my feelings so much.
I had platelets after school but had a cannula instead of them accessing my portocath.
I am going into Great Ormond Street on Friday so that means I will have to have my portocath accessed there. I will have to spend the weekend there as my treatment takes three days. Zoe and my sisters will come and visit me. Dushyant probably won't as he despises hospitals.
At least I can go off the ward for walks. Hopefully I will see go to the other wards and see my lovely nurses who have looked after me in the past and I hope to see some of the BMT(bone marrow transplant)doctors too.
Wish me luck and have a good evening,
Devaanshi Mehta...

They should always teach history in the morning.... before anything else happensxx