July's News

July was a fairly quiet month by Post Pal standards, but there was still some things of note that happened in July.

Firstly, Post Pals received a few new arrivals: Ben H, who is 5 and has a rare brain tumour; Emma B, who is also 5 and has Acute Lymphoblastic Leukaemia; Enya W, who is also 5 (weird coincidence?) and has Langerhans Cell Histiocytocis, a condition that's treated like cancer but isn't cancer; Jaz L, who is 9 and has terminal Ewing's Sarcoma, a form of bone cancer; Max P, who is 2 and is being tested on the website; and Xander G, who is 4 and has X-Linked Agammaglobulinaemia (no, I don't know what it means either!).

There was also some sad news; Lewis R passed away on the 3rd July, at only 2 years of age, from Neuroblastoma. Neuroblastoma is a terrible disease, of all the 25 memorial children over half of them passed away from Neuroblastoma, and this cancer also took the lives of Chintzia (3) and Amelia-Grace (8) on the 23rd and 24th of June, only two weeks earlier.

On a happier note, the Post Pals party was held this month! This annual party is a tribute to Post Pals and all the kids it has helped and is still helping. I will update on how the party went when Post Pals updates.

Apart from this, July has been pretty slow-the team must have been busy, because there haven't been any updates since Lewis passed away.

Look out for August's update!

Dannii xxx

UPDATE: Emma B

Emma B was diagnosed with leukaemia when she was only 3 years old. Intense chemotherapy and maintenance treatment managed to get her into remission by her 4th birthday. Unfortunately, Emma relapsed in October 2009. She was put into remission again, and received a bone marrow transplant from her brother.

Recently she was admitted to hospital again, and the doctors thought that she might have relapsed again-the worst thing that could have possibly happened.

Thankfully, Emma's mum has posted on the website and Emma has not relapsed again-yay!

This is her post:

"Very good news from Emma's doctor-it is not a leukaemia relapse which is causing Emma's latest problems. She has been very lucky indeed as we did fear the worst. There is another blood disorder called TTP which is stopping Emma's new bone marrow producing platelet cells and haemoglobin. Her white cells have recovered after some GCSF booster but the doctor says we might never find out the reason why the white cells dipped. Hopefully the TTP disorder will rectify itself but if not they can treat this with plasmas. All very complicated but manageable.

Thank you so much to everyone who has sent us kind messages and presents. They really do keep Emma smiling."

Emma remains in remission, so let's hope she can get out of hospital soon!

Dannii xxx

(If you didn't understand some of the medical terms in this post, I will be making a glossary soon.)

Birthdays and Anniversaries: Week of 26/07/10

Here are the birthdays being celebrated and the anniversaries being commemorated this week on the Post Pals website.



Faye T (Gastroparesis): Faye's moved on, but you might like to know that Friday is Faye's 21st birthday!



Kyle P: Kyle is Amy P's brother, and Wednesday is his 7th birthday! Why not send him a birthday card?

William M (Intestinal Pseudo-Obstruction). On Friday, it is William's 6th birthday! Happy birthday for Friday, William! Why not send William a card? (William is likely going to spend his birthday in hospital, so he could really use some post to cheer him up. Also, William is one of this month's Featured Pals- Here's the link.

(Information credited to Post Pals)

Illness Profile: Common Variable Immune Deficiency (CVID)

CVID (Common Variable Immune Deficiency) is basically what its name implies. Immune Deficiency means that sufferers have less antibodies (the body's resistance to infection) and are less immune to infections, so get more infections. It is one of the more common immune deficiency conditions, and it varies from person to person; for instance, Charlie H (pictured) has a severe form of CVID.

Current Pals who suffer from CVID are:

Charlie H (4) (pictured): Charlie is doing OK at the moment, though he's still on a cocktail of meds.

Jordan H (13): Jordan is doing OK, but his antibody count is a little low and he has been bombarded with infections for the last three months.

(Picture credited to www.postpals.co.uk, information credited to various medical sites)

Illness Profile: Charcot-Marie-Tooth (Muscular Dystrophy)

CMT (Muscular Dystrophy) is a neurological (affects the nervous system), hereditary (can be passed down through generations) disease. It is named after the three scientists who discovered it: Jean-Martin Charcot, Pierre Marie, and Howard Henry Tooth.

People with CMT slowly lose normal use of their arms, hands, legs and feet as the nerves degenerate. It is incurable, but luckily not usually life-threatening.

Current Pals who suffer from CMT are:

Anna-Mae C (14): Anna-Mae also has Cherubism, which means the bones in her face are being eaten by benign tumours, but luckily this condition will get better in time. Anna-Mae is doing very well at the moment.

(Picture credited to postpals.co.uk, information credited to various medical sites)

UPDATE: Jon Paul O

Jon Paul O (18, Cystic Fibrosis, pictured) is very ill in hospital at the moment, with severely low lung function. Here is the latest post on his page:

"Hello, this is Jon Paul's mum. Jon Paul is still very ill in hospital; he is fighting it, but not winning at the moment. He is very tired and just wants to sleep. All I ask is if you can say a prayer for him this will help. I will let you know when he is any better, but as Jon Paul says, stay POSITIVE about your illness not NEGATIVE."

Let's all hope Jon Paul gets better soon.

Dannii xxx

(Picture and information credited to postpals.co.uk)

Illness Profile: Cerebral Palsy

Cerebral Palsy is a movement, coordination and posture disorder caused by brain damage to the cerebrum (part of the brain). It can vary from mild to very severe, and it is incurable. Often sufferers need to use a wheelchair. In severe cases such as Brooklyn's (right), sufferers are unable to walk or sit.

Current Pals suffering from Cerebral Palsy on the Post Pals website are:

Brooklyn A (2): Brooklyn is having a lot of problems at the moment due to the CP, constant illnesses and his autistic tendencies, and is in hospital all the time.

Jon Paul O (18): Jon Paul is very ill in hospital at the moment, but this is due to his cystic fibrosis and not his cerebral palsy.

William M (5): Like Jon Paul, William is also very ill in hospital at the moment, but again, this is to do with his primary illness (intestinal pseudo-obstruction) rather than the CP.

BACK TO ILLNESS PROFILES

(Picture credited to postpals.co.uk, information credited to various medical sites)

Illness Profile: Acute Lymphoblastic Leukaemia (ALL)

Leukaemia is cancer of the white blood cells. There are two main types of white blood cells; neutrophils and lymphocytes. In Acute Lymphoblastic Leukaemia, the lymphocytes in the body multiply out of control, but they don't mature, so they can't prevent infection. They fill the bone marrow so the bone marrow cannot produce the correct amounts of platelets and red blood cells, so anaemia (tiredness and palpitations) and bruising can occur. It is more common in children than adults.

Thankfully, now the survival rate for children with ALL is 95%, which is brilliant.


Current Pals on the website that are suffering from ALL are:

Ben S (10). Ben is on chemotherapy medicines and is doing quite well.

Emma B (5). Emma has recently had a bone marrow transplant and is still in hospital.

Jack Peter B (7). Jack Peter is nearing the end of 3 long years of chemotherapy and is doing well.
Lauryn A (6). Lauryn is currently being treated for a fungal infection related to the ALL.

Nia S (10) (pictured). Nia has a very rare and aggressive type of ALL. She has relapsed and is in hospital having very intensive chemotherapy.

Zachary H (5). Zachary is on chemotherapy medicines and is doing well.

BACK TO ILLNESS PROFILES

Illness Profiles

A lot of the Pals' conditions can be complete gibberish to anyone who isn't a doctor. (It was total gibberish to me at first!) I mean, what the heck does Langerhans Cell Histiocytocis mean? If you would like to understand more about a particular Pal's condition, and see it explained in more simple terms than on the Post Pals website itself, just read one of the profiles here. More will get added in time.

Acute Lymphoblastic Leukaemia (ALL)

Cerebral Palsy (CP)

Charcot-Marie-Tooth (Muscular Dystrophy)

(Picture credited to Google Images)

Birthdays and Anniversaries, week of 19/07/10

Here are the birthdays being celebrated and anniversaries being commemorated this week on the Post Pals website.

Enya W, LCH: Tomorrow (24/07/10) is Enya's fifth birthday. Happy birthday for tomorrow, Enya! Why not send Enya a birthday card or a little gift?

Daniel M, Neuroblastoma: Daniel passed away on the 14th June 2008, aged 5. On Monday, it would have been Daniel's 8th birthday. Why not send Daniel's family a letter?

Jack Bradley B, Biphenotypical Leukaemia: Today is the second anniversary of Jack Bradley passing away, aged 9. Why not send Jack Bradley's family a letter?

Christian B, Clear Cell Sarcoma of the Kidney: Christian's moved on, but you might like to know that Monday was Christian's 7th birthday!

Jordan T, Cystic Fibrosis: Jordan's moved on, but you might like to know that today (23/07/10) is Jordan's 18th birthday. Happy birthday Jordan!

Amelia-Grace C, Neuroblastoma: On Sunday, it will have been a month since Amelia-Grace passed away, and her family could really use some post.

Hafsah A: Hafsah is Ayesha A's brother, and it was his 12th birthday on the 22nd. Why not send him a birthday card? (Edit: Sorry if Hafsah is a girl, it's not clear and I'm not great with Indian names :) it sounds like a boy's name to me but I might be wrong.)

Jessenia L: Jessenia is Jaz L's sister, and it was her 4th birthday on the 21st. Why not send her a birthday card? (Jaz's cancer has been declared terminal, so Jaz's family are having a hard time at the moment.)

Matty W, Acute Myloid Leukaemia: Matty W has moved on, but you might like to know that tomorrow is Matty's 15th birthday! Matty was one of the first five children to join Post Pals.

Jack P: Jack is Max P's brother, and it was his 10th birthday on the 19th. Why not send him a birthday card?

What Is Post Pals?

Post Pals is a charity which features children with life-threatening illnesses such as cancer and cystic fibrosis on their website, and allows the general public to send the children (known as Pals) gifts, letters, emails and cards (known as Posty to the Pal). The children on the website have a variety of conditions, they are all life-threatening and sometimes even terminal or incurable. The Pals are usually aged between 2 and 17, but there are a few exceptions, and the oldest Pal is 20. Each Pal has their own page, with their picture, basic information, an address to send their post to and their story.

Post Pals is run by a team of people, the three main people being Vikki George or 'Viks' who has severe ME, and came up with the idea for Post Pals when she was bedbound and getting post was one of the best things that happened to her; Vix, who got ME when she was doing her A Levels and is now recovering; and Kat, who has a pituitary tumour. Kat was so ill that she was classed as a Pal for a time.

If you want to know anything more about Post Pals, please leave a comment :)

(Picture credited to www.postpals.co.uk, some of information also credited to postpals.co.uk)

Ways to Help Out Post Pals

So, you've seen my new blog, checked out the website, and decided that you want to help out Post Pals. But how do you help out? Here are some ideas about things YOU can do for the Pals.

1. Send a cheerful email to one of the kids! If you don't have a lot of time, this is probably the most feasible option. What would you rather do in 5 minutes, go to the vending machine to grab a Kit Kat, or make a little girl who's been stuck in hospital for three months smile? Maybe include a funny picture, your favourite joke-it doesn't have to be hugely complicated.

2. Write a letter! This is the main thing that Post Pals encourages people to do. On the Post Pals news page is a post about what to say in a letter and what not to say: http://www.postpals.co.uk/news.php

3. Send a gift! Gifts will really make this children happy. However, make sure to check the Pal's page first to find out what kind of things they like, and also if they are allergic to something. Here are guidelines for children in oncology (cancer) wards in hospital: http://www.postpals.co.uk/ans.php?id=25

4. Make a donation! Post Pals is seriously short of funding-Viks and her team all have conditions such as ME and cancer so they usually can't work apart from on the charity, and when they send gifts to the kids they usually rely on donations from the public or the generosity of companies. Just 50p will enable a child in hospital to get a postcard from the team.

5. Spread the word! As well as the above, one of the most valuable things you can try to do it spread the word about Post Pals! Post Pals is not a well-known charity, and they could definitely use a few more people who can spread word about this amazing website.

6. Hold an event for Post Pals! Some ideas: Sponsored silence, bake sale, letter-writing project to get as many letters as possible for the kids, bring in old toys for the kids event, fete, maybe even run a marathon, things like that, and donate the money to Post Pals. Post Pals have never received more than £600.00 in donations from kind volunteers-maybe you can change that! Here is the fundraising page: http://www.postpals.co.uk/fund.php and here is the contact page where you can donate by sending money to the address: http://www.postpals.co.uk/contact.php

Now give yourself a pat on the back for making a sick child smile!

July: Featured Kids 2

William M is 6 on the 30th of July. He adores Thomas the Tank Engine, music and Sunday School, and has two sisters, Hope and Ellie. Here is his story.

William has had problems for his whole life. He was born prematurely and was in hospital all the time as a baby, diagnosed with cystic fibrosis. It was soon to become apparent that this was not the case. He has severe reflux and problems swallowing, so he had to have a gastrostomy so that William could be fed straight into his stomach. It was discovered that he has intestinal pseudo-obstruction, problems with the function of the intestines, which means nothing was moving along through his intestines so it was flowing back to his lungs, causing damage.

William cannot tolerate any food or drink and is on a drip 20 hours a day. He is frequently in hospital due to life-threatening bugs in his intestines, which can cause serious illnesses such as septicaemia (blood poisoning). He also has cerebral palsy which affects his movement so he uses a wheelchair outside.

Currently, William is in hospital for a simple tummy bug that is dangerous however for people like William who have had bowel transplants. He will likely be there for some time and could really use some post and gifts to cheer him up!!!

(Picture and majority of information credited to http://www.postpals.co.uk)

July: Featured Pals

Each month I am going to feature two kids on the site who could really use some cheering up right now. This month's kids are Jaz L and William M.

This is Jazmine L. She is 9 and adores Hello Kitty, High School Musical and singing/dancing. She has a little sister called Jessenia, who was 4 yesterday. Here is her story.

Jazmine was diagnosed with Ewing's Sarcoma, a type of bone cancer, in her femur at only 6 years old. It was discovered that the cancer had spread to her lungs and her family faced the reality that Jaz's cancer could be terminal.

Luckily, Jaz pulled through and the tumours on her lungs disappeared. In November 2009, she was declared cancer free, and her family were elated. Sadly, on the 8th July 2010 it was discovered that her cancer has returned and is terminal. She has compiled a list of all the things she wants to do before she 'gains her angel wings'. Please send her some lovely post and cheer her up.

Here is this month's other Featured Pal: http://postpalsgetinvolved.blogspot.com/2010/07/july-featured-kids-2.html

(Picture and majority of information credited to http://www.postpals.co.uk)

Welcome to my blog!

Hi! I'm Dannii Cugini, and I'm 13. I got the idea to create this blog from looking at my favourite charity's website, postpals.co.uk. It is clear that postpals is not a very well-known charity-often, when they raise money, they don't get 7000 pounds, they get 7. But that is enough to send out 14 postcards. They clearly could use some more people to get involved with the charity, and that is why I am trying to make that happen!