Our Pal - Jayde D

Story written 2005

Jayde was diagnosed with DBA when she was just 7 weeks old, she was rushed to hospital (on my request) and her HB level was 2 (she should have been dead!) After a lot of tests and transfusions she was diagnosed with DBA.

Since the age of 7 weeks (she is now 9) she has received a blood transfusion every 3-4 weeks and at 18 months she first got a vascuport. She has been receiving Desferrioxamine infusions through a pump which she wears in a bumbag round her waist, connected to her vascuport every day and every night (apart from Sat and Sun – we are allowed to have a break then!).

She goes to a mainstream school and is very intelligent even though she misses at least a good third of school a year thought illness or transfusions, or problems connected to the pump, or infections of her port!

Jayde’s only cure would be a bone marrow transplant (we have tested all immediate family and sadly no match).

Jayde is a happy, intelligent child. She enjoys her life and I only hope that she will continue to do so! (From her Mummy).

Update 20th February 2014

As Jayde is 18 she is now moving on from Post Pals. We wish her all the best and here is a lovely message from the lady herself 🙂

I honestly can’t thank you enough for all the help you have given me for over half my life! All the letters and cards and gifts I’ve received have made me smile so much and have got me through a lot. I am so thankful and I can’t begin to tell you how inspirational Post Pals is for helping so many children already and many more to come!

I’m doing okay but I still continue with the 3 weekly blood transfusions, iron chelation medicine every day and various appointments. I am currently doing an apprentice at a nursery which I’m really enjoying although it’s very tiring. I am being constantly tested on my vital organs for iron overload from blood transfusions and they say my liver is worse affected at the moment, but it is reversible damage if I keep taking my drug. On the other hand, the doctors are concerned that the dosage of the drug could also damage things, with my eyes already showing signs of cataract. I have been discussing options with a specialised transplant doctor in London about the possibility of a bone marrow transplant which could possibly cure my illness, although it’s a lot to take in and think about! I am going to see them again in March and they will do initial tests and that’s when I will decide what I would like to do/if I’m healthy enough to have one. So that’s a wait and see.

I will definitely keep you updated and we’d love to come to the Post Pals parties in the future! I would also love to start writing to some of the children on Post Pals because I can say from an insiders view that it honestly is an amazing feeling to receive happy post when you are most down! Thank you so much again, and I hope to see you at the party this summer!

Update 27th January 2013

Jayde has been told recently she has liver damage (because of the iron overload). It is 44% of her liver so they have upped her drug to see if it may help. She has been in discussion with the doctors about a bone marrow transplant, but sadly none of her siblings match and they also won’t consider it until her iron levels are lower, so it’s probably not an option.

Jayde is doing well in her college course, she is doing health and social care because she would like to become a peadiatric nurse!! The amount of time she has spent in hospital must have had some weird effect on her! She does miss a lot of college still but has managed to catch up, just!

Update 16th April 2012

Jayde has started a new drug to try and help with the build up of iron around her organs, she now wears a pump for 12 hours a day which is attached via a small needle in her stomach. Jayde is getting on well with this so far. Her transfusions are now every 3 weeks as her hb seems to be dropping quicker. Jayde is going through transition at the hospital so she is going to have a transfusion on the adult ward soon to get used to it for when she turns 18, scary stuff!

Jayde was given a wish at the end of March by ‘dreams come true’ she got to meet her idols ‘mcfly’. Oh my goodness she was a state, I went with her and she just burst into tears as soon as the boys came into sight! They all hugged her and had a nice chat and signed her shirt and poster she had made – safe to say I think she enjoyed her wish!

Update 9th January 2012

Jayde is having some problems with her medication at the moment and we are also waiting for an appointment to see a specialist about the possibility of a bone marrow transplant.

Update 7th October 2011

Jayde is now having her transfusions every 3 weeks as her levels are dropping faster as she is getting bigger.

She had her 16th birthday on the 1st and had a party to celebrate which was fancy dress. Jayde went as Lady Gaga!

Update 20th February 2011

Jayde’s new brother arrived on 14/01/11 (his daddy’s birthday) and he is very yummy!

Jayde is waiting to have a bone scan at the moment. She is getting on well with her new central line and it has made the blood transfusions a lot easier and quicker.

Update 7th December 2010

Jayde has had 2 transfusions now through her new line and both went really well. She was home by 8pm (which is a first as it is normally early hours of the morning!) so fingers crossed it stays like this for a while. We are getting used to flushing the line each week and soon Jayde will try and do it herself! We are all getting ready for the busy next few weeks ahead – Christmas, Kyra’s birthday on New Years Eve and the arrival of Jayde’s baby brother (due 6th January) so we’re hoping Jayde will keep extra well!

Update 23rd October 2010

Jayde had her new central line fitted 2 weeks ago. Unfortunately she has already got infections in 2 of the wounds from surgery, so she is on antibiotics at present but is feeling ok at the moment.

Update 14th October 2010

I just wanted to let everyone know that Jayde had her operation for a new central line on Thursday. All went well and fingered crossed it will work and she won’t have to have loads of canulars each transfusion.

Thanks to all who sent her good luck messages through Post Pals.

Update 25th September 2010

We have finally got Jayde’s operation date for her new line to be fitted and it is the 6th October.

Update 7th September 2010

Jayde has been back to London and has been booked in for various mri scans at the end of October as she has a high level of iron build up on her liver. She is still waiting for her central line and has had to be stabbed with needles up to 12 times on each transfusion, so hopefully the docs will hurry up and give her the line as it really isn’t fair on Jayde and she is getting very fed up with it all.

On a good note, she had a wonderful birthday and would like to say a huge thank you to everyone for her amazing cards and presents, she loved all of them and had a wonderful day.

Update 22nd August 2010

Jayde is still waiting for a central line – hopefully soon! She is still getting pains in her knees and is still going to physiotherapy for them.
She is keeping herself busy planning her Twilight themed sleep over for her birthday.

We are also happy to announce baby number 7! Due on January 6th 2011 – it’s a boy.

Update 4th June 2010

Jayde has finally been told she can have her port taken out and a new one put in (the old one hasn’t worked for ages and she has had to be stabbed lots and lots of times each transfusion as her veins don’t work either!). We’ve just got to wait for a date now.

Other than that, Jayde’s legs are quite bad at the moment again and she is finding it hard to walk long distances.

Update 4th November 2009

Jayde has been having a bit of a rough ride lately, she is starting to not like the fact that she has to go to hospital so often or take her medications each day. She is also having a lot of physiotherapy for her legs, has to wear new insoles that have been made for her, is seeing a dietician (as she has put on a lot of weight due to her medication), seeing a skin doctor as her skin is extremely dry (again possibly caused by medication), starting counselling for kids with long term illnesses soon, and now has a home tutor to try and help her with all the school she misses because of illness.

So, all in all, she’s a bit down in the dumps at the moment and who can blame her! Especially with all the ‘normal’ problems of being a 14 year old girl to add to everything else! Hopefully the counselling might help her a bit and her mood will lift.

Update 13th May 2009

Jayde has had some special insoles made to try and help her leg pains, along with having physio. We get them on Monday so hopefully they will help her a bit.

Update 12th March 2009

Jayde is going into hospital next week (17th March) for her port to be changed. I will update you as to how it all goes.

Update 9th February 2009

Jayde is seeing her surgeon this week to decide on what to do with her port (it has stopped working) so she will be having another operation very soon.

Update 25th January 2009

Jayde has been having physio for her knees which is helping a little bit. She is due to see someone in orthopaedics about having some sort of shoe insole or wedge to try and help her a bit as her leg muscles aren’t as strong as they should be, hence why she is getting pain in her knees. We are not sure if this is anything to do with her condition yet. She is also still having transfusions every 4 weeks and taking her desferal every day.

A big thank you to everyone who sent cards and gifts for Jayde and her siblings at Christmas. They are in the process of writing thank you letters to those who left addresses, but thank you to everyone.

Update 4th June 2008

We had a lovely family holiday in turkey 2 weeks ago, but when we got back Jayde was due blood and unfortunately got another line infection, so spent the end of last week in hospital. She is still on iv antibiotics until Saturday but is feeling much better.

Update 25th January 2008

Jayde has had a busy month waiting for her new sister to be born! She eventually arrived 8 days late on New Years Eve. She is called Kyra.

Jayde has been having treatment for her skin condition but so far it hasn’t improved and she has had to spend quite a lot of time off school. Hopefully it will start to get better soon. I’m still not sure if it is because of the new drug she is on.

All the children had some lovely gifts from their elves at Christmas, they will be writing thank you notes over the weekend to all those who gave addresses, but a huge thank you to all of you for taking the time to send these lovely gifts.

Update 1st November 2007

We are still waiting to hear if Jayde can continue on the oral drug instead of her pump. Jayde will be having lots of scans this month in London so it’s going to be a busy month for us.

Update 6th August 2007

Jayde is suffering from bad hair loss at the moment and we are still not sure if it is connected to the trial drug or her skin condition, but we will have to wait and see. Hopefully it will clear up a bit before she starts senior school on 3rd September.

Jayde is busy planning her birthday party for 1st September at the moment and is having fun during the 6 weeks holidays.

Update 2nd July 2007

Jayde is having another good month. She is playing molly in her school production of ‘Annie’ in 2 weeks so has been very busy. Health wise she has been ok, although still getting problems with her legs and has now also got very bad skin which we are waiting to see a dermatologist for as it could be related to her medication.

We have also got some good news to share! We found out we are expecting our 6th child due 23rd December, so Jayde and her brother and sisters are very excited and can’t wait for Christmas this year! Although mummy is a bit concerned about missing her Christmas dinner!!

A huge thank you to all who sent cards and gifts for Jayde’s siblings for their birthdays.

Update 2nd May 2007

Jayde is doing well this month. She is looking forward to starting swimming at school next week (which she hasn’t been able to do previously because of wearing her needle all the time) and she is going to be in the school production of annie! She will find out what part she gets in a few weeks. Health wise, we are going to London tomorrow to get some more tests done and hopefully get results from her last liver MRI to see if the iron buildup around her liver has remained the same or got any worse.

Update 18th April 2007

Not really much change since last month other than we now have our appointment for the bone specialist in July. Huge thanks to Celia and everyone else for the eggs and the twins’ presents.

Update 2nd March 2007

Jayde is waiting to see a bone doctor as she is starting to have difficulty walking far because her legs have become very painful. Other than that her results on the new trial drug have been reasonably ok.

Update 16th February 2007

Jayde is having problems with her legs and is finding walking quite painful at the moment, hopefully her doctors will sort out some tests for her soon to try and find out the problem. Jayde also had another line infection last month so was on IV antibiotics for a while but she is ok now.

Update 3rd January 2007

Jayde would like to say a huge thank you for all the wonderful gifts that she received for Christmas. Thank you from her siblings for the gifts that they received too.

Update 1st December 2006

Jayde is doing well on the trial drug, she has had a rash and bad throat but other than that it seems to be going ok.

Update 1st November 2006

Jayde has now started on a new drug that if works will replace her pump every day, so fingers crossed. She is happy about this as it means she can go swimming a bit more which she enjoys.

Update 4th September 2006

Firstly a big thank you to everyone who sent Jayde cards and presents for her birthday, she will get round to writing to thank those of you who included addresses soon.

We have had a busy month; we spent three days in London where Jayde underwent lots of tests. We are hoping to go on a trial for a new drug which would replace the pumps Jayde has to wear all the time if it works on her, so fingers crossed. Jayde also had her port re-sutured at the start of the month; it is working well at the moment and will hopefully stay that way for a while. Other than this, Jayde has been reasonably well this month.

Update 23rd May 2006

Jayde is booked to go and see a specialist in London this Thursday, should be interesting! She is now on the waiting list to have an operation on her vascuport as it is really problematic and her nurses are having problems accessing it. Hopefully the operation will sort it out or they may decide to give her a new one.

We have been very busy trying to move house recently. Hopefully we move in a couple of weeks (fingers crossed). I have been very stressed and I swear we are never moving house again!

Update 30th January 2006

Jayde got some lovely cards and presents over Christmas, thank you all so much. Also thanks to Anna who has been writing to Jayde’s siblings.

Jayde has only just got the all clear from her line infection (which we could not get rid of, even after several antibiotics) so fingers crossed she will be ok and reasonably healthy for a while.

Update 23rd December 2005

Jayde isn’t very well at the moment due to another port infection. She was taken to hospital via ambulance on Tuesday, but is home now.

Update 8th December 2005

Jayde is still having problems with her port, but other than the odd cold that’s doing the rounds, she has had a good month.

Can we wish everyone a fantastic Christmas and a happy new year and also a huge thank you to Jayde’s elf Celia.

Update 1st November 2005

Thanks to everyone who has sent mail to Jayde this month, also to the people who have been writing to Tayla and Charlie (the siblings really appreciate it too!).

Jayde has had another good month although the problems with her port continue. We have seen her surgeon and will be seeing him again early December to decide whether an operation is needed on it. Jayde’s desferal has been increased as well.

Update 10th October 2005

Jayde is having problems with her port and the nurses are finding it quite hard to access. She has an appointment soon with her surgeon to see if it’s time to change it to a new one. Other than that she has been quite well this month.

Please can we say a huge thank you to everyone who sent cards and gifts for Jayde’s 10th birthday. She is writing thank you notes and you should get them all soon if we have your address. Thanks again. 🙂

Update August 2005

Jayde has had a good month, she’s had her regular transfusion and drugs and is feeling quite well for once!

Unfortunately, her little sister Tayla broke her arm badly at the start of the school holidays, so she has taken over the poorly bunny crown from Jayde for the last month!

Thank you to all the people who have sent Jayde and her siblings some beautiful cards and gifts this month.

Update June 2005

Jayde is still having IV antibiotics for her port infection, we are trying for one more week and if the blood cultures don’t come back clear then its time for another port! Thank you for all the Posty and the sunshine biscuits were fantastic!

Update 3rd April 2005

Every card, letter and gift has been fantastic. Jayde has brightened up since being on Post Pals. She realises it’s not just her family that cares!

Jayde was rushed to hospital on Tues 29th March with a serious line infection in her port, it had been pushed into her blood stream when her was being used and made her very poorly. She is on IV antibiotics for at least 10 days but was allowed home at the weekend. Hopefully the antibiotics will remove the bug from her line, if not she will have to have another port put in, so it’s wait and see at the moment.

Update 31st March 2005

Just a quick note to say Jayde is in hospital at the moment, she was rushed in by ambulance on Tuesday morning. She has a severe infection in her port and is feeling very poorly.