Personal Messages for Tanya & Ed
Please jot down your notes of support, love and prayers for the Lilleys.
To leave a message click here
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message from: enny
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message from: marlene medina
I now what you felling my son is 3 year old and have the same and is hard my son have 9 month with the treament and now they have to change because is not working my stories is the same that yours . my son neme is mark im going to prayer for you son to. my e mail is enny90@hotmail.com God bless our son they are angel.
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message from: Pip
Think of you all often all our love and prayers
Pip, Steve, Holly, George and Sarah xxx
message from: Rachel
Always thinking about you xxxxxxRachel
message from: Jenn (Cleveland, Ohio)
I just wanted to stop by and let you know I will pray for your family. Gus is a beautiful boy, I wish for him a just as beautiful holiday season with love, fun, family and friends.
message from: Kelsey
im 15 and i dont know yall personally but my best friends was diagoned with dipg in december of 06 and after 1 and half long years of struggle my best friend passed away. But he changed my life more than a fell grown person could of your child is reaching out to so many people and touching there lifes cause they are showing us to live every day to the fullest and not knowing what tommorow might bring . they dont give up hope. keeping praying. cause im praying for you.
message from: shamsher
hi,
i am a poor guy my name is shamsher from indai. i am in love with a girl.Her parents are very rich.they are not allow to marry . and we love each other very-2 much. her parents are going to marry her doughter with some other guy. and at this point I am totally helpless.I dont want to losse my love. because i cant live without her .and she will be also . I need some finincial help .if some body can help me please help for god sake. and please pray for me that i get my love back. I will be very thankful to you.
my email id is sam_ind@ymail.com
plz help please help
message from: martine et régis
How do you do ?
Et, en particulier, Gus ?
Bon anniversaire pour le 9 à Tanya !
Love
Martine et Régis
message from: Rachel
Thinking about you all, lots of love Rachel
message from: The Rosses
With love to The Whole Bunch of Lilleys from Us xx
message from: Grammy Blick
I learned of Gus on BaptistMoms.com in a prayer request. Please know there are many praying for Gus' health and for your strength. This syndrome is new to me -- thank you for sharing Gus' treatment and the effort to spread information and connect with others.
God bless and keep you and yours, and may your story not only help Gus, but many others.
message from: Dr.Samuel/ Houston,TX
Dearest Tanya and Ed,
My prayers and thoughts are with you. Everyone here at the clinic has many fond memories of Gus and is praying for him to recover soon.
Love,
Dr Samuel and Burzynski Staff
message from: Tammy Olsen / Arizona - USA
Dear Tanya and Ed,
I don’t know if you will receive this email, but I thought it was worth the effort to let you know that we are here for you and supporting you with our prayers.
Please know that I have been following your story about Gus and keeping your family in my continual prayers. What you are experiencing with Gus touches my heart so deeply and my constant prayers are forever before the throne of God expecting Him to intervene and give you all the strength that you need.
Our daughter Briannah was dx with the same tumor as your Gus. We are at present receiving Antineoplaston Therapy as well.
My heart and prayers are with you.
Sincerely and prayerfully yours,
Tammy Olsen and family – From the state of Arizona/USA
Below is Briannah’s web-site. Please feel free to visit the site to obtain updates on her condition.
http://www.easysite.com/BabyBriannah
message from: kevin andrina
we are thinking and hoping for you all, good luck in your fight gus, sweden..
message from: karen 18
hello. i do not really know you personally but i have recently been hearing cases much like yours when my mothers friends daughter came down with a disease almost just like the one you are struggling with. i do not mean to scare you by leaving a message but i have recently been extremley intrested in the types of cases like this that go on worldwide. i hope that everything works out. and remember you are stronger. so keep your head up high and never look down. best wishes.
message from: rachel
hi there, thinking about you all, hope you're ok, lots and lots of love rachel xxxxxxxxxx
message from: Leanne Robertson - Australia
Lilley Family,
I'm trying to contact you, but your email gets sent back. My daughter has been fighting diencephalic syndrome for almost 5 years - I really need to get in contact with you, please.
leannepisasale@dodo.com.au - www.caringbridge.org/oceania/sophiejay
message from: Baylie
This is Baylie again and I was checking on gus since that is now a daily thing!! Just know I am praying for you and you can email me whenever at suthernchik123@gmail.com I would love to help in anyway possible!=)
message from: rachel
Hope you've had a nice christmas....wishing you all the very best for 2007. Hope to see you soon! lots of love Rachel
message from: Baylie
Hi Ia am Baylie a ten year old who lives in alabama. Last night I was looking at the jjs miracle site and saw Gus . He is so cute. I want to let you know that I will be praying for you every night.
God Bless You,
Baylie
message from: simon and Joanne
Hi Tanya
I know I see Ed a lot, so Jo and I thought we would say Hi and let you know we think you are a saint for all you have to do each day, 7 days a week 352 days a year.
Gus is a very special boy and we all want you and your whole family to have a very very special Christmas...
Will be thinking of you all on the 25th
Love
Simon & Jo
message from: Leiann Neubauer
Haven't heard much about our little Gus lately and wanted to drop a line to let you know that I was thinking of you guys. I would love to hear how he does in school with the treatment, bathroom issues, tiredness, etc. Give him loves and kisses for me.
Leiann and James
www.caringbridge.org/in/james
d_lneubauer@hotmail.com
message from: Miss Debbie Headley,
my first love was dignosed with this disease unfortunately all i could do was love him and lovingly care for him as it finally took his little life but that was in the early 1970's we have so many ways to treat your child today and as i am a special education teacher i have a special place in my heart for these children and always will, my heart goes out to you and your family .
message from: rachel
Hope that you're all ok, are you coming over to France this summer? Would love to see you all. Lots of love from
Rachel xxxxxxxxxxxxxx
message from: Xiaohong
So glad to hear the good result!
message from: rachel
Have just read your latest update, I'm so pleased to hear that Gus is making good progress....keep up the excellent work! Hope to see you soon love Rachel xxxxxxxxxxxx
message from: Xiaohong(nancy33486)
Little Gus,waiting for your good news!
message from: simon and Joanne
in the months that I have known Ed and he has told us about Gus it makes us think more of our own children and how lucky we are,
Ed and his family need anything you only have to ask !!some say these words we mean IT.
message from: Xiaohong(nancy33486)
Thinking Gus now, so come here, hope Gus is doing well.
message from: nancy33486
Best of luck and my prayers always with you everytime.
message from: rachel
Hope that you're all ok...I keep looking for the latest news on Gus, thinking of you, lots of love Rachel
message from: anonymous
10 years paying for B's treatment??!! Congrastulations, you really are a survivor... a financial survivor!
message from: Jeff Starnes
We met in Houston in Oct.-Nov 2004. I was truly impressed with the way you all handled your adversity with this disease. Your family (including Briony) was a bright spot in my life during this crisis. My wife Karen passed away in Nov. 04. She was too far along with the disease that the ANP did not work. I have since remarried and my family has moved on with the next chapter in our lives. Just wanted to let you all know that you are still in my prayers and I think of Gus frequently. He still brings a smile to my face to see him growing so big now.
Best of luck and my prayers again go out to you during this time...
Jeff
message from: Martine et régis
Bon courage Gus pour le nouvel IRM. Nous sommes avec vous dans l'espoir.
Merci pour la jolie photo des trois mignons bambini.
Avec notre affection
M&R
message from: kevin
Hello u 5, so happy that your care and efforts are being rewarded. what a fighter he is and the rest of you need to be. seems like your information base is so large that i cannot add to it., Wonderful picture of Gus, we will be thinking of you all in your continuing battle. nice to see you still having fun. love, positive thoughts and energy 2 u. kevin xxxxxxxxxxxxxxxx
message from: Rachel
Wishing you all the very best for 2006, that the progress continues and that the year will be full of happiness.
Thinking of you all
lots of love
Rachel, Maurice and Christopher xxxxxxxxxxxxxxxxx
message from: Tina
Happy New Year, may 2006 be a good year.
Love Tina,Padraic,Amy+Sophie
message from: Liz Eitel-Bell, Dinan
Good to catch up with you Ed and so delighted to hear how well Gus's treatment is going. Thought about you all so often and wondered how things were going since you went back to the UK. I can't believe how you've grown since I first met you Gus!
Thankyou for the web site details which I am sure will be of great help and inspiration to my sister's friends. Congratulations on the new baby and oceans of positive vibes to you all. A bientot Liz.
message from: rachel
What a cheeky little boy you look, Gus! Your latest photo is gorgeous and your results are even better. Lots of love to mummy and daddy, Amelia, Newby and to you of course! Thinking of you, love Rachel, Maurice and Christopherxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
message from: Martine et Régis
BON ANNIVERSAIRE ! Chère Tanya !
Belle soirée à tous les cinq !
Affectueusement.
Martine et Régis
message from: Martine et regis
SUPER! Nous sommes très heureux d'apprendre ces nouvelles. Nous pensons toujours très fort à vous. Nous espérons vous voir un de ces jours. toute notre amitié, bisous
message from: Leah
Hi guys,
Just thought I'd send a quick message to say I'm sooo happy to hear about the reduction in Gus' tumour. Also can't wait to meet the new addition at some point. Hope you're all well,
take care xxxxxxxxxx
message from: Briony
Just wanted to say many congratulations on the latest MRI results!! I know you are still waiting until you get written confirmation before you update the site but the early signs look very good, I'm so pleased for you all :¬]
"The best and most beautiful things in the world cannot be seen nor even touched, but just felt in the heart." - Helen Keller
message from: Tina
Wonderful news, long may it continue.
Love Tina,Padraic,Amy+Sophie
message from: Briony
This is a beautiful paragraph sent out by Gabriell from the Pediatric Brain Tumour Group. Her daughter Stevie has had two brain surgeries, radiation, chemotherapy and eight
hospital stays and just graduated from high school. Very inspiring!
'Stevie told me last year that she had this awake-dream and in it she realized that all things were one. When one person hurts we all hurt, when one person wins the Gold in the Olympics we all win the Gold. Five fingers, one hand, all connected. There is no experience we don't have, because we share all experiences. Today my daughter graduated, for all our kids.'
message from: Susan
Hi Tonya & Ed
This is my first time to your website. Your son is so precious. I will keep him in my prayers, and continue to check in on him.
Oh, CONGRATUALTIONS on your new son! So blessed to read he is "healthy"!
God bless you all,
Susan & Jordan
http://www2.caringbridge.org/la/jordanamato/
message from: Sharon & Richard
Fantastic to hear your news, Love & Hugs to you all. Keep Strong. XXX
message from: www.caringbridge.org/nh/brooke
Hi,
I am checking up on the kids we know through the computer. WOW, Gus you are soooo BIG!! You have come a long way there little man. :) Keep Fighting
Congrats On Your Growing Family
(((((HUGS))))) Love, Denise, Brooke & Family
message from: Briony
Hi all,
Am sending hope and prayers for the results of Monday's scan, I'm crossing everything that the tumour has started shrinking and GOSH will let you continue treatment.
Lots of love,
Auntie B xx
message from: rachel
As I've seen on the homepage Gus is proudly showing off his baby brother! Congratulations to the growing "Lilley" family. Hope that all went ok Tanya and "bebé" is fine too. A big hug and kisses to you all and take good care,
love Rachelxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
message from: Mrs Ross
This is the only way I can get any info about you all! So glad to learn how well Gus is doing and hope Amelia has settled well in the homeland! I send all of you love and kisses and can't wait to meet the new Lilley xxxxx
message from: Rachel
Hi there!
Great news, I've just been on Gus's update page and I'm ever so pleased that he is is such fine form, he's wants to show his new little brother, when he arrives, all of his new tricks!! Love to you all, and a big hug for Tanya especially, hope all goes well with the rest.xxxxxxx
love from Rachelxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
message from: Nicola
Dear Tanya and Ed
As always you are in my thoughts and it would be great to catch up with you all now your back in England. You can get me on nicola.shubrook@viacom-outdoor.co.uk. Give a big hug and kiss to Gus and Amelia. I love the new photo of him and Tanya too - I have it saved on my desktop!
Lots of love and prayers
Nicola xxx
message from: Susan
Dear Lilley Family,
I came across your website many months ago while doing research for my son who has an inoperable thalamic astrocytoma. Your Gus is beautiful and I have found myself checking in often to see how he is doing. I do hope all is well and that you can update soon. All my best, Susan - New Jersey, USA
message from: Rachel
Dearest Ed, Tanya, Amelia and little Gus,(and the big bump too!)
Just wondering how you all are. You're often in my thoughts. I keep going for a quick look on Gus's website to see how things are going and I just hope that you're all ok.
Lots of love and a big hug too!
love Rachel
message from: Tina (Sophie's Mum)
Hi
We met in Pinner this morning and I would love to meet up to talk.
Sophie's Website is www.melroseroad.co.uk
The website is great I love the photos.
Love Tina
message from: Briony
Some thoughts to keep you going when things are tough....
"Nothing in the world can take the place of persistence. When nothing else seems to help, I go and look at a stonecutter hammering away at his rock perhaps a hundred times without as much as a crack showing in it.
Yet at the hundred and first blow, it will split in two, and I know it was not that blow that did it - but all the blows that had gone before."
Jacob Riis
"There is no thrill in easy sailing when the skies are clear and blue, there's no joy in merely doing things which any one can do. But there is some satisfaction that is mighty sweet to take, when you reach a destination that you thought you'd never make."
Spirella
"Chance favors the prepared mind."
Louis Pasteur
message from: rachel
Dear Tanya, Ed, Amelia and little Gus,
Just to let you know I'm thinking about you and hope that Gus' treatment is going well in London. hope you're keeping well too Tanya, look after yourselves and lots of love to you all
see you soon xxxxxx
message from: Nadine
Dear Tanya & Ed,
I learnt about little Gus through Briony, who's a business contact of mine, eventhough we haven't met in person yet, Briony and I are "virtually working together". But over the past months, she has become much more than just a business contact.
I want to wish all of you all the strength in the world to cope with Gus' disease and all the stress this causes for all of you, but in particular for little Gus.
Sending lots of regards and prayers from Belgium to all of you !
xxxxxxxxxxxxxxxxxxxxxxxxxxx
message from: Nicola
Love as always to you all - still thinking and praying for you and the little fighter, Gus. Be wonderful to catch up via phone or in person if you're around so please do call/email if you get a spare 5 seconds!
Lots of love and hugs
Nicola xxx
message from: The Rossheeds
Looking forward to seeing you all on your return to Blighty! Kisses to Amelia and Gus and much love to you allxxxxx
message from: Phillipa
Dear All, been checking in and see you are on your way back soon I hope all goes well love Pip
message from: Tammy Eades
I have been waiting on an update on sweet little Gus. I hope he is well. You are in my thoughts and prayers.
message from: Richard Claire Bill & Ben
Best wishes to you all for 2005 and we hope and pray that this will be one full of positives for Gus. Love to you all.
message from: Ebo, Auds, Leah and Olivia
Wishing you all the very best of everything. Hope Christmas is peaceful. Enjoy each other. Love you with our big ol' heartsxxxxx
message from: Mallory & Kathy
We miss you and we we love you!! We hope you are doing well. Please give Gus and Amelia a big hug and kiss from Mallory . She is hanging in there.
We're thinking of you always and we really do hope everyhing will turn out wery well for all of you.
Love , Your Friends Always !!!
message from: Nicola
Dearest Lilleys
I hope Gus is doing well after treatment in the US. Tanya, Happy Birthday for the 9th - sorry I was away - and wish Amelia Happy Birthday too for yesterday! Where does the time go?! I hope you're all ok - you're all always in my thoughts. Lots of love Nicola xxx
message from: Leiann and James
Dear Tanya and Ed, We pray that things are settling in and all is going well. How is Gus doing? How are you doing, Tanya? Thank you so much for the wonderful evening in Houston. Let me know if there is anything we can do to help. Send you number, I would love to call you sometime.
Love and prayers, Leiann
message from: Rachel
Thinking of you, hope that you're all looking after one and another.
big hug for little Gus and Amelia...and an even bigger one for you two, keep your chins up!
lots of love and hope to see you soon.
message from: Martine et Régis
Nous sommes, nous aussi, pleins d'espoir pour Gus et pour vous. Nous souhaitons également, à notre tour, un joyeux anniversaire à Tanya en lui souhaitant le plus beau des cadeaux...
Nos pensées vous accompagnent avec toute notre affection.
Bisous
message from: Briony
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY TO YOU
HAPPY BIRTHDAY DEAR TANYA
HAPPY BIRTHDAY TO YOU !
message from: Gina - Drew's mom PBT
Ed, Tanya, Briony, Gus, and family,
My thoughts and prayers are with you all. There isn't a day that goes by that I don't pray and think about Gus. I hope all is going well. Please keep us updated when you can. Please know that if you need anything, I am here to help.
Wishing you all peace.
Hugs,
Gina
www.caringbridge.com/va/drewb
message from: Leiann Neubauer
Dear Ed, Tanya, Briony, and all,
I has been so good to hear that things are starting well for Gus. Maybe the difference from James is the wonderful diet you have him on. Who knows? I cannot wait to meet you on the 29th.
Love and prayers,
Leiann and James
message from: rachel
Hope all is going as well as possible for little Gus. Thinking of you over there.
lots of love to you all
message from: Simone Church (Olivia JPA)
Tanya and Ed,
I feel I know little Gus so well through following his progress on the PBTG. He is an absolutely gorgeous little guy and I wanted you to know that I will be praying that this treatment goes well. Briony is amazing, I imagine she is fantastic support for you guys. Please take care on your journey. I will truely be thinking of you.
Hugs to your little man.
Simone m/o Olivia JPA optic chiasm/hypothalamus 6yrs
message from: Briony
I thought this was really lovely...
A Measure of Life by Marjorie Wright Miller
The elm lives on for half a hundred years
Or more, a rose but a single June;
No need to wish it were not so; tears
Of regret can never change the tune
Of Earth's mysterious song; she measures time
In beauty, not by the numbered hours she lasts,
Not by heights to which a tree can climb,
But by the sheltering shade that it casts;
The smallest flower that breathes but a day
Distills its fragrance into sweet perfume,
Garbs itself with grace in bright array-
Exquisite, brief intensity in bloom.
Whether the notes of life are short or long,
From end to end what matters is the song
message from: Leiann Neubauer (and James)
How is everything going? We are hoping to have an appt. in Texas on October 29th. Is your oncologist going to be able to follow Gus? James is doing great. He has been back on the treatment about 1 1/2 weeks now with no problems. We have moved very slowly, I think that helps. He is doing good in school, keeping up with his work even with days missed for appointments. His eye exam showed a little worsening, but we are just going to plunge ahead and try to get rid of this tumor ASAP. Let me know how things are going and if there is anything I can do to help.
Love and prayers,
Leiann
message from: Greg Moore
I just read your post to the Burzynski support group & let me just say that you are all in my prayers & I will add Gus to our prayer list at church. Let me also say that I think that you are absolutely making the right decision by taking your son to Dr. B. He & his staff are warm & caring & truly have the patients' best interest at heart. He has successfully treated many types of brain tumors. So, keep the faith & believe! Faith & a positive attitude are contaigous & so helpful when faced with such a potentially devastating disease.
Love & prayers.
Greg Moore
Columbus, Ohio
message from: Terry Tondelli
I'll be praying for your precious little Gus. I visited his website months ago when I saw it on the Brain Tumor list (braintmr.edu.mit). I learned tonite that you are seeking treatment with Dr. Burzynski. My husband is a 10 year gbm survivor thanks to Dr. B. His story is on the patient website. If you have any questions, my email address is ttondelli@hotmail.com
message from: Nicola
Thinking about you all all the time and hope all went well on the 30th ... awaiting the news! Give Gus and Amelia a huge hug for me and I hope to speak to you very very soon. Miss you guys lots. xxxx
message from: Phillipa
Dear all thinking about you and we hope the scan goes well on the 30th. love and prayers Pip
message from: Leiann Neubauer
Wonderful news about the weight gain. We will pray that he continues this way. Someday he will be busting out of his pants like James.
message from: Sharon & Richard
Just a little note to say that we are both thinking about you all everyday. Keep Strong.
Lots of Love
XXXXXXXXXX
message from: Leiann Neubauer, James Mom
Just wanted to encourage you that you scan results sound "wonderful." James' tumor did the same thing, started dying in the middle first with some increase on the outside. The 6 month scan seems to be more likely to show shrinkage. How is the weight doing? I was not able to email you, but my email is d_lneubauer@hotmail.com. James' new website is www.caringbridge.org/in/james. I will post some pics of him with the DS as soon as I can scan them. The "halloween" onces are from last year.
Lots of love and prayers,
Leiann Neubauer, James Mom
message from: Bryan
Good Luck on the SCAN!
--Bryan (dx 10/96, gbm)
message from: Briony
Lots and lots of love to Gussie for tomorrow's scan - I'll be thinking of him all day and crossing fingers for good results !
Love Auntie Bx
message from: Briony
In the words of Sam West AA3 dx 6/87 (17 years!)
"It ain't nothin but a thing."
message from: Briony
Lots of big fat kisses and hugs to you guys - I know you've had a tough one this week with Gussie going to hospital because of feeding problems...
Hope all is sorted now and you can get back into the swing of things...
Lots and lots of love,
Auntie Bxx
message from: Briony
12 Habits of Highly Successful Survivors
The Rules of Deep Survival
by Lawrence Gonzalez
"In a crisis, some people take charge. Others give up hope. Why?
I wanted to understand why some people perish quickly in survivable circumstances, while others transcend seemingly impossible situations. To my surprise, I found an eerie uniformity in the way people survive the most extreme predicaments, the cases I call 'deep survival'.
Here are the 12 crucial skills - most of them mental - that history's most remarkable survivors have used to come back from that journey alive."
1) Perceive, Believe
2) Stay Calm
3) Think, Analyze, Plan
4) Take Action
5) Celebrate Your Success
6) Be A Rescuer, Never a Victim
7) Enjoy the Survival Journey
8) See the Beauty
9) Surrender
10) Believe You Will Succeed
11) Do Whatever is Necessary
12) Never Give Up
message from: Briony
From Diana Miller on the BRAINTMR List group:
"If you have something to do, someone to love, and something to hope for, everyday becomes a celebration."
message from: HDS
Best wishes to you all.
Lots of love to Gus
From all the boys and girls at HDS
message from: Nicola
Dearest Lilleys
Just been checking the website to see how the little monkey's getting on and am pleased to hear he's doing well - good luck with the crawling though! As always, think about you all all the time and sending you lots of love from all the Shueys.
Big hugs to everyone
Lots of love
Nicola x
message from: Melanie Denoon
Lots of cyber hugs and support coming your way form Ontario Canada. I wish I had some information for you about DS. We are a cerebellar pilocytic astrocytoma family . Our little girl is just about to turn 7 and she is the size of a 4 or 5 year old. We have had some HUGE scares and a very rough year.We understand how hard this kind of thing can be , so If you would like to "chat " feel free to send me a note.
Melanie Mum to Alica http://caringbridge.com/de/alicia/
Jonathan and Riley . W/O Paul
message from: Shari and Nicole
Greetings,
What a handsome boy Gus is! I have no information to share but have lots of prayers and positive thoughts to give.
Many blessings,
Shari and Nicole
www.caringbridge.org/nm/nicole
message from: Briony
A sweet little message from someone on a Brain Tumour Message Board:
Ten Suggestions From One Who Hurts To One Who Cares by Jayne Buckles, Parents for Parents
1. Don't avoid me. Tragedy is not contageous. If you are uncomfortable with me because you don't know what to say, then give me a hug and tell me that you care.
2. Don't ask me 'Isn't it wonderful what doctors can do these days?' It is, but this sounds trite and means very little.
3. Avoid telling me your own related instances unless you feel that it can be of very specific comfort. It grows tiresome to listen to everybody's story and their insistence on telling them comes across as an attempt to diminish the validity of my individual pain.
4. Don't talk too much. Conversation can become a wearing effort when I have other things on my mind.
5. Don't ask me how I am unless you really want to know. Once you ask, be prepared to listen. When I am hurting I have a great need to talk about my situation with someone who is truly willing to listen. Don't be suprised if this need continue much longer than you expect - it is suprising how long it can take to work completely through the intense emotions that accompany grief, tragedy or trial.
6. Be patient with my moods. Sometimes nothing you or anyone says or does will be the right thing and I need your assurance that my grumpiness won't keep you from continuing to try to minister to me.
7. Be willing to spend time with me. A comfortable, companionable silence is refreshing.
8. Find a way to let your love and concern show. It is so easy for me to feel very alone because many who care presume that I know that. I need to be reminded of your caring - often ! Send a card or flower, pick up the phone,
stop by, whatever is appropriate, but let your love and concern show.
9. Allow me to hurt. Sometimes I need someone to cry with me more than I need someone to cheer me up.
10. If it fits for you, pray - often and specifically. I am always happy to provide specific information for you to pray about.
message from: THE FERRARA FAMILY
HI,
JUST WANTED YOU TO KNOW MY FAMILY AND I ARE THINKING OF YOU AND YOUR BABY GUS. I HOPE YOU FIND THE ANSWERS TO ALL YOUR QUESTIONS SOON.
I EMAILED EVERYONE I KNOW HIS LINK TO THE SITE.
I ALSO BELONG TO THE CHILDRES CANCER SOCIETY.COM
I HAVE A LITTLE GIRL NAMED BROOKE WHO HAS ALL,WAS DIAGNOSED WITH THIS ON NOV,14TH,2003. SHE JUST TURNED 3. YOU CAN VISIT HER SITE AT www.caringbridge.org/nh/brooke
THOUGHTS & PRAYERS
XOXOX,DEE
message from: Auds
My love and kisses to Tanya, Amelia, Gus and the ever effervescent Edxxxxx Think of you all so often xxx
message from: Phillipa
Dear Tanya and Ed
just read your latest news mum is visiting and we both send all our love
take care Pip
message from: Zoe, Rich and Lily
Hey, how are you all, read your latest update and wanted to send you some words of support. Don't get too down, sometimes things have to get worse before they get better. We are thinking of you and we get regular updates from Holly to hear the progress. If you fancy a chat email me on zoegoulter@btinternet.com and I'll give you a ring back. Love to you all, constantly thinking of you xxx Z, R and L xxx
message from: guslilley.com
We heard about Gus just found your website you are in our thoughts and prayers
much love Noreen Martin and Peter xxxx
message from: Briony
A little note from the Dalai Lama - inspired after my talk last night from a Zen Buddhist Monk from Korea:
If there is a way to overcome the suffering, then there is no need to worry; if there is no way to overcome the suffering then there is no use in worrying.
message from: Rossheeds
More love, kisses and cuddles to you all xxxx
message from: jessica shubrook
Dearest Tanya and Ed,
Noo called me today to see what I can find out for you as I am doing a masters in paediatrics at this present time. I am searching through all my books and have e-mailed my mentors in Australia and America and they are at present searching for information too. I will try and find out as much as I can and keep you updated as I have a link to 15 different paediatrictions around the world. My thoughts, love, prayers and brain are with you.
love jessica
message from: Nicola
Dearest Lilleys
Just wanted to let you know that my thoughts and love is with you all. Big hugs and kisses to Gus (and Amelia) and just call if there is anything I can do - no matter how big or small.
Loads and loads of love and prayers.
Nicola xxxxxx
message from: Liz (friend of Nicola S)
Dear Tanya and Ed,
I received an email about this from Noo and just wanted to say that I wish you all the luck in the world in finding some help for lovely little Gus.
Praying for you and wishing you all the best.
love Liz xx
message from: Sue Andrews
You don't know me but I received an email about you from Briony and just wanted to say that I wish you all the best in your search for information about this disease. I can't at present help with details but am forwarding her email to anyone I think might be able to help.
Thinking of you and wishing you all the best,
Sue.
message from: Briony
Big kisses to Gus for his operation today - thinking of him.....
Love Auntie Bxx
message from: louise(nic's friend)
Hi Tanya,Ed
Just to let you know you are always in my thoughts.I hope things are going as well as can be.You have a beautiful son.Please don't ever give up hope.Lots of love is sent your way from Louise & family.x.x.x
message from: maxine
TO ED & TANYA
JUST WANTED TO LET YOU KNOW THAT IM THINKING OF YOU ALL, THE WEBSITE IS GREAT AND GUS IS GORGEOUS
LOTS OF LOVE AND BEST WISHES.
MAXINE
message from: Paul Sutcliffe
Hi Tanya and Eddy!
Heard about Gus.
We all will be praying for you all in these difficult times.
Lots of love from,
Paul, Ros, Dominic, Phillipa,(&Stephen, Holly-Anne, George- Alexander), Benjamin(&Dorothy) and Andrew(&Pam).
message from: The Rossheeeeds
Have a fantastic Easter Egg Hunt! We all have everything crossed and send every one of you millions of love xxx
message from: Phillipa Hipwell
Dear Tanya And Ed,
Mum gave me a call last night and let me know what has been going on in your lives, I just want to let you know we are thinking and praying for you all.
I visited your web site and Gus is beautiful.
George was born on the 18th April so there is only 2 months between them I couldn't believe it I remember mum telling me you were expecting but didn't realise how close it was.
I know things are not easy for you with his condition but please if you ever need to talk or anything just call 01582 656399.
I am pregnant again no doubt you heard a honey moon baby of all things so am due to finish work again in 3 weeks I only work part time now which is better.
Please take care and love to you all,
Pip & Steve
message from: Adele Doran
Hello, I received your email from a friend of a friend so you don't know me. Your little one will be in my prayers and I will pass on details to anyone I come accross who may have information about Russel`s Syndrome that may be of use to you. Your website is a fantastic idea - with so much energy and support around you - if there is a cure out there I am sure you will find it.
With every good wish to you all,
Adele Doran
message from: Anat Arad
hello to gus and parents,
i just got an email via friend who is in touch with joen (acupuncture).
i forward it to friends that are cancer researh proffesional, and hes wife is brain specialist scientistr (from wissman institute). they both have a lot of connections, in israel and all around the world. i hope they could help you to find info, and connect you to more people in this field.
wish you all the best, send you all love, and hope for heal and wealth to little and dear gus.
anat arad.
message from: Sandrine McIntyre
(Slightly shortened version of original message due to space issue)
Hello Tanya, Hello Ed,
Tanya, you may remember me from Bhs days. I was called Glendinning then (am now married).
Zoe sent me your details and I was so moved to hear about this. Little Gus looks amazing and my thoughts and wishes are with you all during this difficult time.
I hope you don't mind, I wrote to some friends and one of them has copied me all this information which I will now paste below. You never know....
Well what can I say except wish you all the best.
Don't feel obliged but she you need to contact me my email is "sandrine_glendinning@hotmail.com" or Home number 020 8543 4960.
Lots of love,
Sandrine xx
From: "Fiona Noah"
To: "sandrine glendinning" sandrine_glendinning@hotmail.com>
CC:
Subject: RE: Russell's Syndrome
Date: Tue, 30 Mar 2004 11:07:54 -0800
Hi
I forwarded your email to the CyberKnife Society, one of the women there posted a reply on the website telling them to contact NORD. Here's what I found about Russells
Syndrome.
National Organization for Rare Disorders, Inc.
For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, anbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org
I can try a few of the neurosurgeons I know through my work and see if any of them know anything about this disease.
message from: Fiamma and Barnaby Girling
Dear Lilley Family,
We are thinking of you and hope we can pass on some of the strength you need to get through all of this together.
In the meantime, I will pass your website details to anyone who might be able to help.
Best wishes from us, don't fail to contact us if you need any support in London etc.
Fiamma and Barnaby Girling
message from: Clive & Liz
Hi Tanya and Ed,
We are very sorry to hear about Gus's problems.
When it is convenient we would like to come out and see you sometime - and you know we would love to put you up if and whenever you passing through.
We are keeping our fingers crossed for Gus in the hope that something good will turn up.
God bless you all.
Clive & Liz
message from: SCOTT
IM SURE THIS WEBSITE WILL BE OF GREAT HELP AND SUPPORT FOR YOU ALL,I WILL BE PASSING THE DETAILS ON TO AS MANY PEOPLE AS POSSIBLE.EVEN THOUGH I AM THOUSANDS OF MILES AWAY I THINK OF YOU ALL EVERYDAY.
ALL MY LOVE,
YOUR BROTHER/UNCLE SCOTTXXXXXXXXXXXXXXXXXXXXXX
message from: Briony
Just a little note from my aunt and uncle......I will speak to them on my return to find out more....
"We are so terribly sorry to hear about your friend's baby. We know only too well how dreadful it is to receive devastating news about a child's health. (Our son, David,
died of a rare cancer thirty-two years ago).
We have never heard before of Russell's Syndrome but have been looking it up on the internet.
With our love,
Peter and Heather."
message from: Zoe
Dearest Tanya and Ed,
We are thinking of you daily and admire your great strength through these very difficult times. We are on the end of the line, if you want to talk anytime, night or day. Love to you all, keeping everything crossed for you. Big hugs xxx Z, R & L
message from: emma / shane
hi guys, just wanted to let you know your in our thoughts and prayers, keep positive and keep smiling. lots of love emma and shane. xxx
message from: Mrs Fatbelly and co!
We send huge love and kisses to you all! If there's anything we can do please don't hesitate to let us know! You are all in our thoughts and prayers! xxxxxxxx
message from: roger/brenda
be strong and have faith you are all in our thoughts and prayers...... love to you all
roger & brenda
message from: Sharon & Richard
Thinking of you all everyday, keep strong, stay strong
Love & Best Wishes
XXX
message from: Jan,Nev & Girls
Hope everything went ok today.thinking of you all.
Lots of Love X x X x X
message from: paul carey
thinking of you,be strong.lots of love,paul,leah and jay.
message from: Alex Duff
I received an email from a friend of a friend. I have pasted a link on a few websites that I use and I hope that someone will be able to give some advice.
My thoughts are with you at this terrible time. I hope that this site helps find the advice you need.
Best wishes, and loving thoughts to you all.
message from: A passing soul...
Saw this site linked on another totally different site, and thought I'd post my good wishes to you. I hope you find the information and the miracle you're looking for.
Best wishes and prayers.
Tony
message from: The Rosses
Thinking of you a whole heap. Much big love to all of you from all of us xoxoxox
message from: Richard,Claire and William
Our thoughts and prayers are with you all each and every day - May God bless you all. x x x x
message from: lara
we don't know eachother as I got your web page info. from a friend of friend...but I have two possible contacts i will get a hold of today and return the information to you as soon as I hear back. Your prayer circle has just become bigger.
message from: Briony
Wishing you all the love in the world......big kisses for Gussie and Amelia.....see you very soon.
Hope everything goes well on Monday,
Love Auntie Bxxxx
message from: Claire
This website is a wonderful idea and we will pass the details on.
It was great talking to you tonight Tanya, keep strong, love to you all.
GCGC xxxxxxxxxxxxxxxxxxx
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