Our Pal Summer P
Easy remember link: http://www.postpals.co.uk/pals/Summer+P
Quick Link: Summer P's Story
| Born | 14/03/2003 |
|---|---|
| Illness | Pilocystic Astrocytoma |
| Status | Current |
| Home Page | http://tinyurl.com/y8pp63 |
Address: - READ SAFETY
Boughton Heath
Chester
Cheshire
CH3 5RR
United Kingdom
NB: this is a forwarding address for the Pal, we do NOT disclose home addresses
Email - READ SAFETY
Other Information
- Summer P's Parents/Guardians
- Julie and Brent
- Summer P's Siblings
- Summer P's Interests
- Camping, trips in her VW Campervan and VW Beetle, listening to music, handbags, shoes, 'talking', meeting people, playing with dolly and pushchair, touch and feel books, Miffy, stickers, crafty items
- Summer P's Favourite Colour
- Red
- Is Summer P able to read?
- No
- Is Summer P able to use hands?
- Yes
- Is Summer P visually/hearing impaired?
- Yes
- Does Summer P suffer from any developmental delay?
- No
- Summer is
- Registered blind, with a little site in her right eye
Summer P's Story
Story written 2006
In March 2005 Summer was admitted to A&E for tests. She was not walking, had projectile sickness and we were concerned about her vision. An MRI scan showed a brain tumour (benign and slow growing). Summer’s ventricles were blocked and she had Hydrocephalus. She was transferred to Alder Hey Children’s Hospital, Liverpool. After an 8 hour operation, Summer had pulled through and was in intensive care, but we were informed that Summer was now blind.
In August 2005 the MRI scan showed re-growth, so Summer had a central line inserted and started Intense Chemotherapy for four months. At Christmas, Summer’s scan showed the tumour was stable, we can’t explain the relief. Summer is still currently on chemotherapy until February 2007. Her recent scan has showed a slight shrinkage in her tumour which we are overjoyed about.
Summer has adjusted to what bit of vision she has in her right eye and uses it well to navigate familiar surroundings. She is a little miracle. We are so proud of her; she is a very happy little girl and makes everyone who knows her smile.
Keep fighting Princess :)
Story update January 2008
Summer completed Chemotherapy in April 2007 and has 3 monthly follow-up scans. We have been informed that because Summer still has tumour remaining, the chances of it re-growing are likely, so she could be facing further surgery/chemo/radiation in the future.
Update 1st May 2008
We got some news this afternoon regarding Summer's blood results. Unfortunately they are not what we wanted to hear - she is going to need growth hormone injections daily. So we’re really gutted for Summer as she has been through so much in her little young life.
Update 31st April 2008
We are all doing fine. Summer and
Summer was in hospital last Friday to have hormone level tests and ultrasounds – she was beyond brave - she was starved from Thursday at midnight and couldn't eat until Friday lunch time. Over the course of 4 hours she had 9 blood tests and she wouldn't eat and drink after the tests so when she went to ultrasound she didn't have enough fluid inside, so after another hour we went back and they were able to do the scan. We are awaiting the results now to see if she needs growth hormone or any other medication.
Summer has also got the dentist next week. She needs to be referred to the hospital to have her tooth taken out as she has had an abscess and due to the chemo and diet on treatment, her teeth are now very weak. So we will keep you posted on news.
Special thanks to Shirlayne and family for cards, jokes and the fabulous card making set. To Post Pals for the Louis Vuitton bag! Grace for the hair accessories, she loves them! Also to
We are so grateful and overwhelmed that so many people take the time to think of our precious children and to put smiles on their faces everyday :)
Update 11th April 2008
We would like to thank everyone at Post Pals! Summer received a lot of mail this month and she was so excited everyday.
March was a very eventful month for us. It started with Summer's 5th birthday, where she received a staggering 60 birthday cards and all the princess goodies that you can buy! She was extremely happy to receive some sweets through the post, a reiki teddy, handbag, hair accessories, cd's, stickers, everything that she could have wanted and much more.
Summer then went on to have her MRI scan, which she was very worried about going for, but again amazed us with her bravery! We are delighted to say that her tumour remains stable after a year off chemo, but she does require further endocrine tests, which she is going for this month. She is having her hormone levels checked and an ultrasound.
Then it was Easter! Again, thanks everyone for their lovely Easter cards. I don't think Summer could believe she had much more post than mummy and daddy and she shared it with her baby brother! We did a treasure hunt which she loves.
The end of the month we had a week up in
Now it’s back to school!
Update 29th February 2008
Summer has had a fantastic month with Post Pals, thanks to all who have sent Summer cards and presents, even Valentine's cards from abroad!!
Summer has had a mixed month complaining of head aches and falling over far too regularly, bless her. She is doing brilliantly at school and her progress is great. She has learnt to type S in Braille and can spell her name verbally.
She has been very socially active - swimming, days out, picnics, playing with friends, the cinema, and lots of birthday parties!
Summer is going to be 5 on the 14th March - what a celebration for us all! It is 3 years since Summer’s diagnosis. Her scan is on the 17th March and we have to wait 8 excruciating days for the results, but as soon as we know we can let you know.
Summer has grown 3cm in the last six months but it is very below average
compared to her weight and age, so we will be meeting with the Endocrine team to discuss if Summer requires any intervention yet, but hopefully not :)
We are going to
Thanks Everyone!
Update 30th January 2008
Apologies for it being late, but I would like to thank everyone who sent Summer parcels and cards at Christmas!
Summer is still doing really well. She has settled into school and is very popular, especially with her being pretty small as everyone wants to look after her. This is nice but Summer is very independent and likes to feel that she can manage on her own, which is understandable.
We went to Euro Disney for 4 days last week and had a magical time. Summer was so happy to meet all the Princesses (her favourite being Cinderella) and
Summer is going to the dentist this week for 2 fillings which is pretty bad at her age, but I think the chemotherapy has had an impact on her teeth. I will let you know how that goes!
Summer is 5 in about 6 weeks which is an absolute miracle for us especially, after her diagnosis at 2, so an extra celebration for us. Two days after her birthday, Summer has her next MRI scan to determine if there has been any further tumour growth. She will have been off chemo for nearly a year by then. So fingers crossed.
Summer has started learning Braille in reception class now and seems to be enjoying it. She can spell her name but cannot write it yet. We are so proud of her!
Thanks again to Post Pals for their continued support, it really helps!
Update 4th December 2007
Summer has caught a cough and cold from school and it has wiped her out, bless her. We had two hospital appointments last month, one with our local Paeditrician to see how Summer's growth and weight is. After all the chemo she has had we are waiting and observing at the moment, but next March we might have to intervene with growth hormones if Summer doesn't start growing soon. Hopefully all will be ok. We also saw the Eye Specialist who was over the moon with Summer, he said she was very co-operative and a little angel. He also said her vision has not improved, it’s her ability and confidence that has, we are so proud of her! Our next MRI Scan is on the 17th March just after her 5th birthday (which will be another personal and double celebration for us all).
We are all very excited about Christmas. It is extra special for us this year as it will be the first Christmas we will be at home as Summer isn't on treatment at the moment. It will also be
We are very fortunate enough to be going to
We would once again like to thank everyone including Post Pals for all their support and parcels and cards that Summer has received this year. We are eternally grateful and are so happy to be able to be an Elf this year and make someone else happy.
THANK YOU
MERRY CHRISTMAS AND A HAPPY NEW YEAR!! :)
Update 1st November 2007
Summer has had a brilliant month receiving post it’s been lovely for her. We also have some really great news! Summer's scan results were positive; there has been no tumour growth since the chemo completed in April, so 6 months off treatment now.
Summer's scan day was very traumatic for her, they put magic cream on both hands and tried 4 needles in one hand and two needles in another before deciding that she would have to be put to sleep with gas as her veins have collapsed and they couldn't put a cannula in. It was so upsetting for her and for us, when she woke up from her scan she was hysterical as she thought something was still happening to her so it took us an hour to calm and reassure her that she was ok.
We can now celebrate our first Christmas in three years with Summer well and we cannot wait.
We all had a fantastic time in
In the half term holiday we took Summer to visit Thomas the Tank Engine Tour which was at Llagollen Railway and she thoroughly enjoyed it. We also went swimming, Summer was so brave she went into the water with the arm bands and enjoyed splashing her legs while we held onto her. She has been a very busy little girl.
She is very tired this week as she has got a bad cough and a high temperature but nothing we cannot fix without lots of cuddles and kisses as she has lots of birthday parties to attend to; she has a better social life than mummy and daddy!!
Thanks to everyone at Post Pals who has sent Summer post, we really are very lucky :)
Update 30th September 2007
Summer has started school and is really enjoying herself and making new friends.
We would like to thank everyone for their continued support and to post pals for sending Summer's cards and gifts! She loves it when the postman comes!
Update 12th August 2007
We have been doing a lot of camping lately with Summer and her brother
We had a letter through the beginning of last week to say that Summer's operation to have her central line removed was going to be 2 days later. We were surprised but relieved as we were hoping that it would be taken out before she starts school in September. She was extremely brave as we had to starve her from 7:30 Thursday morning and she didn't go down to theatre until 4:30 in the afternoon. She was very patient and understandably got bored, but didn't ask for food once, bless her. We are very proud of her. So the next day we took her shopping and she picked some Cinderella glass slippers from the Disney shop but was more excited about going to McDonalds for lunch! Easily pleased! :)
Can we take this opportunity to thank Post Pals and all the people who send and have sent Summer cards and parcels throughout her treatment. Summer will continue on observation until further treatment is required in the future. Her next MRI Scan is booked for the 22nd October. We are due to go to the Malcolm Sargent House in
Best Wishes,
Julie, Brent, Summer & Phoenix :)
Update 9th July 2007
We have received Summer's MRI results from last week and we are extremely happy to share the good news that Summer's cyst and tumour remains stable even after completing chemo in April and she has had no new growth which is such a relief.
Summer is staying well and looking really healthy. She has been enjoying attending a few afternoons at the Primary School which she will start in September.
She is doing a great job of being big sister, we are so so proud of her. She was really brave when we took her back to hospital after having a three month break and the difference is unbelievable - she is so aware of what is going on and is always asking questions.
Thanks to Post Pals for their continued support. Summer loves receiving her cards, they always make her smile.
Update 11th June 2007
We have our new baby! Phoenix Ethan was born on 7th June at 8am. He weighed 7lb 1½oz. Summer is very excited and is besotted with him. She is such a good helper it’s great.
Summer has her next MRI Scan on the 5th July, and then we meet with her Consultant on the 17th July for the results. Summer has been very well since completing chemo and her appetite has come on in leaps and bounds, we are so proud of her.
Thank you to everyone who has sent Summer presents and cards, it really does make her smile and she loves waiting for the postman in the mornings.
Update 6th May 2007
Summer completed her last chemo on 12th April but she required blood transfusions and had to stay in hospital for 5 days afterwards to recover from an infection. The relief of the chemo being completed is strange but wonderful. Summer looks much healthier but is a little confused as to why the hospital visits have stopped. We would like to thank Post Pals for their surprise card announcing Summer had completed chemo we will treasure it forever!!
We have had a meeting with Summer's Oncologist and he has decided for Summer to keep her central line in for a while longer so that if surgery is required in July to remove the cyst growth, it will be easier for her. More decisions will be made at the next MRI Scan on the 5th July, so feeling rather nervous.
Summer's baby brother is due in 4½ weeks so we’re very excited now!
Update 3rd April 2007
We have had a mixed month with good news and bad news. Summer celebrated her 4th birthday which was a very special day for all and she thoroughly enjoyed it. She is now very excited about the Easter Bunny coming.
Summer had her ear operation just after her birthday. The brilliant news is that while she was under anaesthetic, they realised she didn't require any grommets. Whatever was there had resolved itself and the relief was indescribable. We were over the moon!
Summer had her MRI Scan last week and we have been informed that while the solid mass tumour is still stable, we have had no more shrinkage. Summer has new Cyst growth very near to the tumour and it is one that could give cause for concern, possibly surgery. We meet with Summer's Oncologist and team at the end of the month as Summer is completing Chemotherapy next week after nearly two years (another private celebration) and starting observation. She is to have a kidney function test this month to check on her kidneys now that the chemo will be finished and have regular hearing checks too. Obviously, we have mixed feelings of excitement and fear, but we are staying positive.
Summer's next MRI scan is the 5th July so we will wait and see what happens next. Fingers crossed. Summer's baby brother will be about 3 weeks old, so we will be very busy and occupied which will be good.
We would like to thank everyone at Post Pals for sending Summer parcels and cards for her birthday and for all the supporting messages that she has received on her Website. Summer was post pal of the month and it was her birthday too - she received lots of cards and presents, so thank you to everyone who posted to Summer. She was extremely excited and waited for the postman every day! :)
At the moment Summer is very well, she will probably require blood transfusions at the end of the chemo cycle, but then she will be put on the waiting list to have her central line out which will be fantastic. Summer is already telling everyone that when "Wilbur" (central line) goes in the bin, we are going to teach her how to swim!
Update 2nd March 2007
The last couple of weeks have been very distressing and upsetting for Summer as she has not been happy about going to hospital and having her treatment or co-operating with the hearing tests. She has been so brave throughout all her treatment and is now probably fed up of being touched and the constant invasion.
She completed her chemo cycle yesterday and her blood levels are all low but because she is border line they are not transfusing just yet.
Summer has her ear operation booked for the 16th March just after her 4th Birthday which will inform us of what is in her ear and if they can remove it.
Summer also has her MRI Scan this month on the 29th March and double chemo the same day, so a very busy month for her and us.
I was in hospital last weekend with a false alarm for an early labour (I’m only 26 weeks pregnant!) I think all the stress is catching up with me, but I have to say Summer was a little super star and has been my little helper all week and is looking after me. We are so proud of her :)
Thank you to everyone who sent Summer post, she received some great gifts including: - comic relief ears, some cd's, a hand puppet and more. It really made her smile :o)
Update 20th January 2007
Summer is currently in hospital at the moment, she completed her 3 week cycle of chemo on thursday and all her blood levels are low and she needs platelet and hb transfusions. Her temperature also went to 38.6 so they started her on IV drugs for 48 hours. We were hoping to take her on a little holiday tomorrow but hopefully will be able to go on Monday if she is well enough.
Summer is going to be a big sister and is very much looking forward to it! We are having a baby boy!
Update 30th December 2006
Summer had to go into hospital Christmas day tea time but luckily was allowed out 4 hours later with oral antibiotics.
Summer received lots of Christmas Cards and was very excited every morning when the postman arrived. Thank You to EVERYONE who sent Summer post in December. Thank you to everyone at Post Pals who sent Summer a Christmas present and to Summer's Elf; as it really made Summer's Christmas a special one and despite being poorly she was still happy and Post Pals made that happen :)
Update 1st December 2006
Summer has received a lot of post in November and it made her very happy and excited every morning. She has had a good month, maintained her weight and is still currently having chemotherapy. She will be home this year for Christmas which is fabulous and her next MRI Scan will be 21st Dec 2006. Thank you to everyone who has put a smile on Summer's face!
We would like to thank all the children at a School in Manchester who sent Summer letters and pictures about themselves, that was lovely. Big thanks to Kate, Despina, Nikki, Cheri & Itsy Dog, Kelly, Charlie beautiful pic, Aamilah & Uzayr, Julie Barett and many more :)
Update 3rd November 2006
Summer has had her MRI Results from September - her tumour is still stable but no more shrinkage. She will complete Chemotherapy next April. She has another MRI Scan on the 21st December. She had two transfusions last week and has just come back from a holiday at Malcolm Sargent House in Scotland.
Summer would like to thank Hwee Hoon for her lovely postcards from Singapore, Tibet & Turkey and her bracelet it was also touchy feely. Also thanks to Julie Barrett for the Halloween card and balloon.
Update 1st October 2006
Summer had her MRI Scan last week and we are painfully awaiting her results, we will let you know as soon as we can. She is pretty well at the moment; she is having a kidney function test and hearing test this week before starting her 3 week block for chemotherapy.
Summer received a touch and feel book which she loves and a handbag that you make yourself. Summer loves receiving mail (her daddy is a postman!) and the postcards from around the world are fantastic, so thanks everyone!
Update 21st September 2006
Summer has her next important MRI scan on the 27th September.
Update 2nd August 2006
Summer is still in hospital with a high temperature. She has been given a third antibiotic because she is neutropenic (no immune system). Her bloods have just come back and she needs a platelet transfusion and magnesium infusion together with other medicines. Tomorrow they are going to give her a blood transfusion along with the antibiotics and then she will be transferred to Liverpool Hospital for Chemotherapy on Thursday.
