Kennedy L

22 April 2016

Story written 2016

Kennedy was diagnosed with acute lymphoblastic leukaemia (ALL) on November 25th 2015. She had been poorly for a couple of months with different infection such as tonsillitis and a urinary infection. During this time she had also been complaining about her knee hurting and her back hurting. We had a number of visits to the GP and hospital. Eventually on the 25th she came out in a rash that covered her legs. I did the glass test and immediately rushed her to hospital. The hospital were very quick to do bloods and that’s when they said the most likely outcome was leukaemia. Great Ormond Street Hospital confirmed this the next morning.

Kennedy now has two years of chemotherapy to get through. She is currently in remission, which means they cannot find the disease under a microscope or it’s a very tiny amount. However that doesn’t mean it isn’t there which is why the treatment is for two years. She is at low risk of relapsing, so fingers crossed she just carries on fighting like she has been.

Update 16th October 2017

Hi all. Sorry it has been so so long since we updated. A lot has gone on but I will try and keep the update as short and sweet as possible.

Firstly a big thank you to everyone who sends post. We have been pals for over a year now and still every single day the kids ask if I have checked the letter box. That just shows how much they love and appreciate their post and how much it helps them. So THANK YOU again from the bottom of our hearts.

So basically Kennedy is currently doing really really well. She is in full time school now and loves it. She can get quite tired sometimes and just needs a day to rest ect.

She is coping a lot better with hospital and nurse visits and having procedures such as bloods done etc. No more pinning down and she hardly cries.

She is tolerating her chemo really well. Although since upping her methotrexate she seems to be having new sides effects of it. She has it on a friday evening. Then saturday and sunday she seems to have really bad angry tantrums that she can’t control. She can’t snap out of it and there is nothing we can do to help her. The doctors haven’t heard of the methotrexate doing this before but didn’t seem too worried. She seems to be suffering nausea quite often too but we have medication to help that so it isn’t too bad.

Over the last few months she has had a couple of hospital stays. One was really scary where she had a very nasty virus and needed oxygen. She has coped brilliantly though and as soon as she was back on her feet she was to her usual happy, cheeky self.

Finally we would like to say a HUGE THANK YOU to Post Pals, the volunteers, Fearne Cotton and to all that donated in order for us to go to Peppa Pig World. We had such an amazing time and there are no words to express how grateful we are. The smiles the kids had on their faces the whole time meant so much!

We have so much love for you all xx

Update 4th January 2017

Hi everyone. So it’s been a while since we have updated … so sorry!
We firstly again would like to say a huge thank you to everyone that sends post! It really does cheer us all up.

So, Kennedy has been doing really well. She started nursery in September. It was hard at first and I had to keep leaving her screaming and crying (I did too when i got out the gates, lol) but now she loves it there. She has had to have quite a bit of time off, sadly, due to being poorly through November and December. She kept getting coughs and colds and then at the beginning or December was admitted to the local hospital for 4 nights with tonsillitis and an ear infection. Since then she has been fine (touch wood).

She still struggles with having her port accessed. We thought we had it slightly under control but then she takes 10 steps back 🙁 We have come to the conclusion that it will more than likely be like this until the end of treatment and we just need to deal with it. The good thing is that once it is finished she settles very quickly and is happy to carry on playing etc which means she isn’t too traumatised.

She had a fantastic Christmas and thoroughly enjoyed herself. She did get very tired after, although that didn’t stop her playing with all her new toys.
She even managed to eat some of her Nanny’s Christmas dinner (she still pretty much lives on cold food like sandwiches and cereal).
Thank you to all that sent Christmas cards, parcels, reindeer letters, Mrs claus and Santa letters and Elf parcels. They got so many and we are so, so, so grateful. They loved opening every single one.

She had her chemo upped a little in October as her bloods were staying on the high side. They are still remaining a little on the higher side (not too much) but probably enough to up them again.

She has recently been complaining about pain in her legs and arms. So I’m just keeping an eye on her.

Other than that she is a tough little cookie and continues to smile, laugh and give thumbs up 🙂

Happy new year to you all. We hope it is a happier and healthier year for you all.

Update 24th July 2016

First of all we would like to say a massive thank you to every single one of you who have sent Kennedy and her siblings post. It really has helped them and they look forward to and appreciate every single piece

Kennedy had a bit of a rough time during the intense part of treatment. This included staying in hospital for a week with a horrible viral throat infection and mucotisis.

Since finishing the intense stage she has been doing really well. We have had some trouble with her port that got resolved but other than that things are looking good.

She is looking and feeling great and has been full of energy. However if we go out for the day to a park etc she does get tired easy and can last for a few days if she does to much.

Took her about a week to recover from the post pals party (which was amazing!! Thank you so much)

She still struggles with the stairs but doesn’t let it stop her and she keeps going.

She still struggles a bit with being accessed but is getting a lot better now. She doesn’t kick or hit out anymore. She just lays there and cries. Hopefully this will get better over time too.

Kennedy can not wait to see the film Finding Dory!

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Theo P

22 April 2016

**Please do not send Theo any sweets**

Story written 2016

In July 2015 Theo was diagnosed with stage 4 Neuroblastoma. He started treatment straight away, which consisted of having a Hickman line inserted, seven cycles of induction chemotherapy, followed by surgery to remove the primary tumour.

Theo has now had high dose chemotherapy and a stem cell transplant and has just started daily radiotherapy.

Update 14th May 2016

We just wanted to say a massive thank you to all those who have sent Theo post. He loves every single one of them. He even had a lovely card all the way from Australia this week! Thank you everyone, it’s wonderful what you do for the children. So thank you all on behalf of Theo.

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Henry L

17 April 2016

Story written 2016

**Henry is allergic to nuts and sesame so please be aware if sending food**

Henry was diagnosed with a primary immune deficiency in December 2014, having spent a lengthy ten weeks in our local hospital, with an infection that they could not get on top of.

Henry’s first problems started to appear when he was a small baby and we could not keep on top of oral thrush, which proved very hard to treat. He then went on to have more serious infections and had multiple bouts of pneumonia requiring high dependency, kidney infection with sepsis and orbital cellulitis with sepsis. Every virus he had would leave him back in high dependency, and by the time he was two he had had over 20 hospital admissions. In November 2014 we were admitted with a chest infection,then a cannula in his foot became infected and spread to the bone. We were discharged home on intravenous antibiotics for 16 weeks, which we were trained to give. This was a lengthy 13 hours a day IV regime. At this point he was started on immunoglobulin therapy, which we were trained to deliver once a week at home. Henry then stabilised for almost a year, but was admitted on New Year’s day 2016 with another infection, which took six weeks of IVs to treat. As quickly as we were home we were back in again with another infection for another four weeks. Finally home in March, we spent 12 days at home before being readmitted with a non-blanching rash, which turned out to be swine flu!

Henry is on daily medications and weekly infusions to keep infections at bay, but unfortunately this isn’t enough to keep him infection free. He is not allowed to go to the park, forest areas, sand pits, muddy areas and farms due to the infection risk. He is due to start school in September.

Henry is incredibly resilient and although he hates all the needles, bloods and NG tubes that are thrown at him, we try our best to make medical interventions a positive experience. We set up treasure hunts around the hospital, have picnics where we invite friends and family to join us when he is admitted, race remote control cars and make obstacle courses!

Update 6th September 2016

Thank you to everyone who has supported Henry, we feel as he is stable at the moment we would like to move on. The kind cards and thoughtful presents have been hugely beneficial to Henry at testing times and we are very grateful for everyone’s support. We wish everyone the best of luck

Update 22nd July 2016

Henry is back in hospital, in high dependency. He had been out of hospital for less than 2 weeks and now has sepsis.

Update 9th July 2016

Special thanks to Dottie the Dalmatian which has literally not left his side!! He adores his new puppy and the updates from Clare! Thank you. He’s in hospital at the moment and substituted his usual soft toy for his Dalmatian pup!

Thank you to Dylan and Amelie who kept a dinosaur party bag back for Henry and sent it to us! That made his day!

Sybil and Megan for their amazing colouring, fantastic artwork!

Thank you to the Discovery team for their thoughtful packages, they are brilliant.

Henry is currently in hospital in high dependency unit. We had a really good 6 weeks and thought we were on for a long stretch, we spoke too soon. He remains stable and upbeat in true Henry style. They changed around with his medication so hopefully once his body adjusts to the increase in drugs we might see another good spell!!

Thank you to everyone who is volunteering at postpals and for those that send post. It’s a fantastic organisation which makes Henry smile every time he gets post!

Update 2nd June 2016

Henry is doing well. He has an appointment at Great Ormond Street on Wednesday, so a nice day trip to London! Thank you to Carol for a beautifully made quilt cover, Rebecca for scrapbook, Abigail for writing 3 times, Chislehurst School for Girls and Bethany for the cards.

Update 3rd May 2016

Our first month has been amazing, people have been so generous. Henry spent a few days in hospital last week and a night in high dependency, due to breathing complications following a virus.

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Issy C

07 April 2016

Story written 2016

In September 2015 Issy was sent to the hospital by her GP with a suspected chest infection. The next morning her parents were told that there was a 50% chance it was leukaemia and the diagnosis was confirmed two days later. The diagnosis was obviously devastating and came as a complete shock. She had been well until a few days before her hospital admission, apart from complaining of intermittent pain in her leg and stomach.
The first two months of treatment were the worst and Issy completely stopped walking for seven weeks. She is still not fully mobile, but is now walking and has recently started to try and dance again. Issy is nearly five months into treatment and so far she has had to endure 12 general anaesthetics and numerous hospital admissions. She has lost all of her hair from the different types of daily and weekly chemo she has to have. Despite all of this she is still a cheerful little girl, with a great sense of humour when she is well. Her six year old brother has also been greatly affected by this, as he doesn’t get as much attention as he used to.
Issy is responding well to treatment so far. She is currently on her most intense stage of treatment and hopes to go to nursery some afternoons, when she moves on to the maintenance stage.

Update 19th September 2017

Issy was hospitalised again in July for 3 days with a chest infection, but we managed to avoid a hospital stay for the whole of August so we were able to have a lovely holiday by the coast for a week, which was great! Issy has been referred back to physiotherapy due to some weakness in her legs, so we are hoping that we can get them a bit stronger. She has struggled with them ever since the beginning when she stopped walking but they don’t seem to be improving without help, so hopefully some physio will work. Issy has been coping quite well with the chemotherapy but is still really struggling with the steroids and finds it very hard to sleep when she takes them. Finn seems happier at school so far this year so fingers crossed that lasts!

Thank you so much for all of the post that Issy and Finn have recieved, it really cheers them up and brings us all a lot of happiness, especially when Issy is in hospital, taking steroids or feeling poorly. Your kindness and thoughtfulness continues to make a big difference in our lives, thank you.

 

Update 8th June 2017

Issy eventually returned to school after being off for 3 months, but unfortunately after 3 weeks she caught chickenpox. She was in hospital for 8 days and was very poorly, she also missed a dance show that she had been practising for (when well enough) since Christmas. She still has a chest infection, which 2 lots of antibiotics have failed to clear and is getting tired very easily, but she is back home now and her health is improving. This has all meant that she has missed nearly a month off her chemotherapy, which we are very worried about but the consultants don’t seem overly concerned so hopefully it wont make a difference.

A massive, massive thank you to everyone that has sent post to Issy and Finn. You make such a big difference in their lives, especially when Issy was in hospital. Finn has received more post this month and this has made a big difference to him. He seems a lot happier despite things being the same at school. We really can’t thank you all enough.

Update 22nd March 2017

Issy has been doing well recently, but unfortunately there has been Chicken Pox in her class, meaning that she hasn’t been back to school since Christmas. She has had had to spend the last 10 weeks at home, so she is feeling a bit isolated as she hasn’t had the chance to make friends in her new class yet. Issy is still struggling with the monthly steroids and IV chemo, one of her legs is very weak but we are hoping it improves when she returns to school and is more active again. We can’t wait for warmer weather and for all of the winter bugs to disappear! Issy turns 5 in April so we are hoping to get away to the coast for a few days if she is well enough. Issy’s hair continues to grow and is coming back curly again like it was before. There is a chance that it will fall out again on her current chemo, but so far so good.

Finn has been struggling a bit recently, he hasn’t been enjoying school and hasn’t got any close friends, school are trying to support him with a friendship group, so hopefully that works. He still finds the extra attention Issy has to have very hard and hasn’t been his usual smiley self for a while now, he sees Issy being off school as a treat for her, even though she is desperate to go back! Hopefully things will settle down when Chicken Pox disappears and she returns to school.

Thanks so much for the post we have received, Issy and Finn absolutely love the thoughtful letters and gifts that you send – it is the highlight of their week if something arrives for them

Update 4th January 2017

Happy New Year! Thanks so much to everyone who sent post to Issy and Finn over Christmas, they absolutely loved everything that they received and it made it very special. Their Elf parcels and other gifts were incredible and we have been amazed by the generosity, time and effort involved. Thank you so much to everyone. We wanted to reply to everyone who sent post but unfortunately Issy was in hospital for 4 days the week before Christmas and some of the names and addresses were lost in the chaos. So I am so sorry if you didn’t receive a personal reply, but please know that you created big smiles and made our Christmas. I will post some photos on the official Post Pals Facebook group.
As mentioned, Issy was admitted to hospital with a chest infection just before Christmas, for four days but we made it home on 23rd December, so managed to have a very special Christmas. Her antibodies were tested and found to be OK, so she just seems to have low immunity a lot and we will continue to have frequent hospital admissions. Issy and Finn went on the Post Pals Chessington Christmas trip which was fantastic, they loved it and still talk about it every day. They were also lucky enough to have a day trip to Lapland which was amazing too.
Finn had a lovely birthday. Thank you to anyone who sent cards and gifts. He was supposed to have a little party with a couple of friends, which had to be cancelled when Issy was ill, but we rearranged it for the week after Christmas and he got to see the new Star Wars Film instead, so he still had a great time!
We feel so lucky to be part of Post Pals, you all continue to make such a difference in our lives. Thank you, everyone.

Update 25th October 2016

Issy managed to start school and really loves being able to spend time with friends. She managed 2 and a half weeks before she picked up an infection, so at least she had a chance to settle in. Unfortunately starting school has meant lots of bugs and she has already been hospitalised twice in October with temperatures and a chest infection. Her consultant is now aware that her immunity drops quickly and suddenly when she is ill, which is the reason that she ends up in hospital quite a lot. They are going to have a look at her antibodies to see if she needs more help. She hasn’t been well enough to go to her dance class for the last 5 weeks, so that has upset her. Issy usually likes going into hospital but was very withdrawn during her last 2 visits. She refused to speak to or look at anyone other than her immediate family for both stays. She is also reluctant to talk while on steroids. Issy usually has something contagious when in hospital and we are never usually allowed in the playroom, so she gets very bored. Your post really cheered her up while she was in there, so thank you. Finn is enjoying school, but still finds the extra attention Issy gets difficult, especially when Issy is in hospital. Thanks so much for the post he has received.
A big thank you to everyone at Post Pals and to everyone who sends post. It is very difficult for us to get out and do things as we never know how Issy will be. Having post to look forward to, is everything to us all at the minute. Your kindness makes such a big difference in our lives and really helps us to get through everything, we can never thank you enough.

Update 15th August 2016

Issy continues to do well, apart from when she takes her monthly steroids. She was admitted to hospital for 3 days with an ear and chest infection, as she had very low immunity, but recovered quickly.  She is due to start school in September, which she is very excited about, we are hoping that she is able to attend regularly, but she missed a lot of nursery due to very low immunity and infections. Even on maintenance her immunity seems to drop to near zero every 4-6 weeks, which isn’t a big deal in the summer when we don’t see too many people.But in the winter months, in a packed classroom with lots of bugs around, it will be a different story! She continues to be very happy and accepting of the things she can’t do, she doesn’t see herself as any different from other children. Finn has struggled with the extra attention that Issy gets. This last year has been very difficult for him and we are hoping that things are more stable for us all now that Issy is into maintenance treatment and has less frequent hospital admissions. We have just managed to have a lovely break at the seaside which Issy and Finn loved and was just what we all needed.

Thank you so much for all of the lovely post we have received, we are truly overwhelmed by your kindness and generosity. Issy and Finn are so excited to open their cards and gifts. They have some mail from lots of different countries which is very exciting and some beautiful cards and letters. Sorry that we don’t get much chance to reply to people, if anyone includes an email address we would love to try and say thank you. They really appreciate everything that has been sent. There are too many to mention, but over the last few months special thanks for Issy’s Frozen watch, Snow White ballerina doll, homemade Snow White skirt and headband, also Finn has been sent some Lego, Star Wars hot wheel cars and also a joke book that he loved. Thank you everyone.

Update 6th June 2016

Issy is doing well at the moment (apart from breaking her thumb, when her big brother accidentally shut it in the back door). She has managed to go to nursery for a couple of weeks and even go to a few of her ballet classes.  Her monthly dosage of steroids affect her quite badly and she becomes very withdrawn for a week when she takes those, but she is coping quite well with her chemo. She is getting stronger but still gets tired easily and has quite a lot of weakness in her legs, which will hopefully improve soon.

A massive thank you to everyone who has sent letters and parcels. I am sorry that I haven’t had time to thank everyone individually, but each one means so much and makes a real difference to Issy and her brother Finn. The letters and parcels cheer Issy up when she is feeling unwell and are a great distraction from her treatment. Finn has also loved receiving post, he was feeling very left out, but Post Pals has made him a lot happier.  The post has brought the fun and excitement back into our lives again. It gives them both something to look forward to. I am overwhelmed by the kindness shown towards them both and I wish you could see the look on their faces when they open the post. Thanks again

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