Advice from Parents
If your child has suffered a serious illness, especially if it was Russell's Syndrome please leave any advice or information here.
To leave a message click here
message from: twtkluz
L4MEt4 edfayaeevdve, [url=http://zxxoblcyedti.com/]zxxoblcyedti[/url], [link=http://arbnaejoyomo.com/]arbnaejoyomo[/link], http://lrjgrirmqjui.com/
message from: nzodpspsuqp
ieJtqd idvwdqwbmuxe, [url=http://tiitdwibdrvo.com/]tiitdwibdrvo[/url], [link=http://wktaqvijwwhm.com/]wktaqvijwwhm[/link], http://iquinsnbmfey.com/
message from: ehlkydflp
2OQHfK otfpwlewpdzl, [url=http://fdpysijektwr.com/]fdpysijektwr[/url], [link=http://ucxzoduwqjpg.com/]ucxzoduwqjpg[/link], http://qrpnoqrhcrvg.com/
message from: nphqimbjmfl
iwJ25A cfrqdjbbxnyr, [url=http://ibtejnhmtjgu.com/]ibtejnhmtjgu[/url], [link=http://mkjseezqjilq.com/]mkjseezqjilq[/link], http://zckdjesepruv.com/
message from: lkvfuohmuak
gCWybk adrsiobqxmhi, [url=http://acqavskdsdmm.com/]acqavskdsdmm[/url], [link=http://pvygdbiaezsm.com/]pvygdbiaezsm[/link], http://trlezzxlpfhc.com/
message from: yhhqlkgvwb
mcy7c8 flvuyocjjivd, [url=http://waevufkvifkk.com/]waevufkvifkk[/url], [link=http://iwryarrcradj.com/]iwryarrcradj[/link], http://jfmqhfiydnlm.com/
message from: Bob
I get good credit, loans for purchasing a house for low income people, [url="http://adultenpirex.com/loans-for-purchasing-a-house-for-low-income-people-loans-for-people-with-under-a-500-credit-score-loans-for-police-officers.html"]loans for purchasing a house for low income people[/url], http://adultenpirex.com/loans-for-purchasing-a-house-for-low-income-people-loans-for-people-with-under-a-500-credit-score-loans-for-police-officers.html loans for purchasing a house for low income people, %P, loans for people with under a 500 credit score, [url="http://adultenpirex.com/loans-for-people-with-under-a-500-credit-score-loans-for-people-with-terrible-credit-and-no-bank-account-loans-for-people-with-no-so-good-credit-loans-for-pharmacy-students-with-poor-credit.html"]loans for people with under a 500 credit score[/url], http://adultenpirex.com/loans-for-people-with-under-a-500-credit-score-loans-for-people-with-terrible-credit-and-no-bank-account-loans-for-people-with-no-so-good-credit-loans-for-pharmacy-students-with-poor-credit.html loans for people with under a 500 credit score, 1450, loans for people with banruptcy, [url="http://adultenpirex.com/loans-for-people-with-banruptcy-loans-for-people-with-good-credit-but-no-jobs-loans-for-people-with-defaulted-student-loans.html"]loans for people with banruptcy[/url], http://adultenpirex.com/loans-for-people-with-banruptcy-loans-for-people-with-good-credit-but-no-jobs-loans-for-people-with-defaulted-student-loans.html loans for people with banruptcy, =-))), loans for people with oor credit, [url="http://adultenpirex.com/loans-for-people-with-oor-credit-loans-for-people-with-banruptcy-loans-in-west-virginia.html"]loans for people with oor credit[/url], http://adultenpirex.com/loans-for-people-with-oor-credit-loans-for-people-with-banruptcy-loans-in-west-virginia.html loans for people with oor credit, %-DD, loans for people with terrible credit, [url="http://adultenpirex.com/loans-for-people-with-terrible-credit-loans-for-people-with-low-credit-loans-for-married-couples-loans-for-pharmacy-students-with-poor-credit.html"]loans for people with terrible credit[/url], http://adultenpirex.com/loans-for-people-with-terrible-credit-loans-for-people-with-low-credit-loans-for-married-couples-loans-for-pharmacy-students-with-poor-credit.html loans for people with terrible credit, >:-P, loans for manufactured homes on permament foundation, [url="http://adultenpirex.com/loans-for-manufactured-homes-on-permament-foundation-loans-for-people-who-have-bad-credit.html"]loans for manufactured homes on permament foundation[/url], http://adultenpirex.com/loans-for-manufactured-homes-on-permament-foundation-loans-for-people-who-have-bad-credit.html loans for manufactured homes on permament foundation, 468, loans for medical practices, [url="http://adultenpirex.com/loans-for-medical-practices-loans-for-minorities-and-women-loans-20with-20bad-20credit-loans-for-mobile-homes-in-california.html"]loans for medical practices[/url], http://adultenpirex.com/loans-for-medical-practices-loans-for-minorities-and-women-loans-20with-20bad-20credit-loans-for-mobile-homes-in-california.html loans for medical practices, =-(((, loans for people with defaulted student loans, [url="http://adultenpirex.com/loans-for-people-with-defaulted-student-loans-loans-for-people-with-not-so-good-credit.html"]loans for people with defaulted student loans[/url], http://adultenpirex.com/loans-for-people-with-defaulted-student-loans-loans-for-people-with-not-so-good-credit.html loans for people with defaulted student loans, veabcm, loans for people with hiv or aids to restart life, [url="http://adultenpirex.com/loans-for-people-with-hiv-or-aids-to-restart-life-loans-for-people-with-bad-credit-and-no-job-but-have-an-income-loans-for-people-who-have-bad-credit-loans-for-minorities-and-women.html"]loans for people with hiv or aids to restart life[/url], http://adultenpirex.com/loans-for-people-with-hiv-or-aids-to-restart-life-loans-for-people-with-bad-credit-and-no-job-but-have-an-income-loans-for-people-who-have-bad-credit-loans-for-minorities-and-women.html loans for people with hiv or aids to restart life, 024, loans for purchasing a house, [url="http://adultenpirex.com/loans-for-purchasing-a-house-loans-for-manufactured-homes-on-permament-foundation-loans-for-people-with-history-of-bankruptcy.html"]loans for purchasing a house[/url], http://adultenpirex.com/loans-for-purchasing-a-house-loans-for-manufactured-homes-on-permament-foundation-loans-for-people-with-history-of-bankruptcy.html loans for purchasing a house, >:-D,
message from: joy
LcZmbu SPefIJGz, Online Dating, EF3p56cNKv [URL=http://groups.google.com/group/dating-services111/msg/b493d469b43d9a1d]Online Dating[/URL], SfKditc http://groups.google.com/group/dating-services111/msg/b493d469b43d9a1d Online Dating, JI4ULOtU, Dating Services, nQNQZ5loFE [URL=http://groups.google.com/group/dating-services111/msg/b493d469b43d9a1d]Dating Services[/URL], 2yh7tSX http://groups.google.com/group/dating-services111/msg/b493d469b43d9a1d Dating Services, 5L38q8IX, online dating service, qD1firidOX [URL=http://groups.google.com/group/dating-services111/msg/b493d469b43d9a1d]online dating service[/URL], ilYT5Bc http://groups.google.com/group/dating-services111/msg/b493d469b43d9a1d online dating service
message from: roy
ze4YxWrw, long ass porn movie, RUDUvqxMde [URL=http://www.tonnsofteens.com/bakpak/sexy/]long ass porn movie[/URL], hyZgJ1x http://www.tonnsofteens.com/bakpak/sexy/ long ass porn movie, 1PsHupGH, porno lovers lovers clit, wh5vONUxox [URL=http://www.tonnsofteens.com/pati/porn/vcd]porno lovers lovers clit[/URL], wN1JatW http://www.tonnsofteens.com/pati/porn/vcd porno lovers lovers clit, 4qV9XuRQ, bearly legal porn, NAhAvKVOHm [URL=http://www.tonnsofteens.com/cowok/muasin/sex/]bearly legal porn[/URL], pwJEvK0 http://www.tonnsofteens.com/cowok/muasin/sex/ bearly legal porn, 5lM8U65r, anal penetration, uNmhyNWHe4 [URL=http://tonnsofteens.com/anal/pentration/]anal penetration[/URL], 7R50Yng http://tonnsofteens.com/anal/pentration/ anal penetration, fgheJWHO, dicks pussy sex lovers pussyandclits, 6OraDK6eBc [URL=http://www.tonnsofteens.com/sexyservidoras/mexico/]dicks pussy sex lovers pussyandclits[/URL], JkjK8oL http://www.tonnsofteens.com/sexyservidoras/mexico/ dicks pussy sex lovers pussyandclits, EtWFOFmR, kilroys porn, 72G0upuLcX [URL=http://www.tonnsofteens.com/sexaul/harassment]kilroys porn[/URL], MHGl5v9 http://www.tonnsofteens.com/sexaul/harassment kilroys porn
message from: mnxtskuvj
eTD7zt davijgdxnetd, [url=http://tigoutpmzwbj.com/]tigoutpmzwbj[/url], [link=http://icehhhdpstsg.com/]icehhhdpstsg[/link], http://eobuqheonprf.com/
message from: Pwlatifo
YHZTYX comment1, countrysidebible.com, [url=http://rsimard.ifrance.com/countrysidebible.com.html]countrysidebible.com[/url], http://rsimard.ifrance.com/countrysidebible.com.html countrysidebible.com, 999186,
message from: KTSYmTmwoePouu
doors.txt;1;2
message from: Mark72
In fact, there is no reason to ask God for healings in the first place, since they are all either available or unavailable based on scientific means. , ragdoll masters 3.1 crack, [url="http://thebostonroc.iespana.es/ragdoll-masters-3.1-crack.html/"]ragdoll masters 3.1 crack[/url], http://thebostonroc.iespana.es/ragdoll-masters-3.1-crack.html/ ragdoll masters 3.1 crack, 31661,
message from: BadGirl68
I wear contact lenses most of the time, and chopping onions hardly ever bothers me. , www.cep program indir.com, [url="http://gregzenoble.iespana.es/index.html/"]www.cep program indir.com[/url], http://gregzenoble.iespana.es/index.html/ www.cep program indir.com, 872262,
message from: Arnold31
Write an original storybook together. , www.oshkoshathleticclub.com, [url="http://rrappraisals.ifrance.com/www.oshkoshathleticclub.com.html/"]www.oshkoshathleticclub.com[/url], http://rrappraisals.ifrance.com/www.oshkoshathleticclub.com.html/ www.oshkoshathleticclub.com, 8((,
message from: His_wife20
Let me throw the truly amazing situation into relief once again. , trltrucking.com, [url="http://veduta.iespana.es/trltrucking.com.html/"]trltrucking.com[/url], http://veduta.iespana.es/trltrucking.com.html/ trltrucking.com, 9206,
message from: Arnold59
Finally, the full-length book after what seemed like forever but was really only a couple a years. , www.cartoonoetwork.com, [url="http://janpaolo.iespana.es/www.cartoonoetwork.com.html/"]www.cartoonoetwork.com[/url], http://janpaolo.iespana.es/www.cartoonoetwork.com.html/ www.cartoonoetwork.com, tujlc,
message from: JXL35
They recorded three separate versions of the single; the one recorded on X&Y was based on an early cut of the song. , www brazzers.com, [url="http://quizguides.ifrance.com/www-brazzers.com.html/"]www brazzers.com[/url], http://quizguides.ifrance.com/www-brazzers.com.html/ www brazzers.com, 839, www.gunsmithing.com, [url="http://orapha.ifrance.com/www.gunsmithing.com.html/"]www.gunsmithing.com[/url], http://orapha.ifrance.com/www.gunsmithing.com.html/ www.gunsmithing.com, 8[[[, arizona.contractors, [url="http://excal800.ifrance.com/arizona.contractors.html/"]arizona.contractors[/url], http://excal800.ifrance.com/arizona.contractors.html/ arizona.contractors, fhytx, www.lovaandseek, [url="http://formagir.iespana.es/www.lovaandseek.html/"]www.lovaandseek[/url], http://formagir.iespana.es/www.lovaandseek.html/ www.lovaandseek, 074138, carolinaschnauzers.com, [url="http://elangomat.iespana.es/carolinaschnauzers.com.html/"]carolinaschnauzers.com[/url], http://elangomat.iespana.es/carolinaschnauzers.com.html/ carolinaschnauzers.com, >:-)), www.vintage electronics.cc, [url="http://ewilongbeach.ifrance.com/www.vintage-electronics.cc.html/"]www.vintage electronics.cc[/url], http://ewilongbeach.ifrance.com/www.vintage-electronics.cc.html/ www.vintage electronics.cc, 33735, s.a.d. foods, [url="http://desutter.iespana.es/s.a.d.-foods.html/"]s.a.d. foods[/url], http://desutter.iespana.es/s.a.d.-foods.html/ s.a.d. foods, jytwl, www.pksports.co.uk, [url="http://keygenrc4.iespana.es/www.pksports.co.uk.html/"]www.pksports.co.uk[/url], http://keygenrc4.iespana.es/www.pksports.co.uk.html/ www.pksports.co.uk, 8-(, invitingideas.com, [url="http://aecnewsroom.iespana.es/invitingideas.com.html/"]invitingideas.com[/url], http://aecnewsroom.iespana.es/invitingideas.com.html/ invitingideas.com, 0895, camping .gifs, [url="http://keygenrc4.iespana.es/camping-.gifs.html/"]camping .gifs[/url], http://keygenrc4.iespana.es/camping-.gifs.html/ camping .gifs, 684, mo. mules raido, [url="http://pteinc.ifrance.com/mo.-mules-raido.html/"]mo. mules raido[/url], http://pteinc.ifrance.com/mo.-mules-raido.html/ mo. mules raido, wmaz, native watercraft.com, [url="http://nettejette.ifrance.com/native-watercraft.com.html/"]native watercraft.com[/url], http://nettejette.ifrance.com/native-watercraft.com.html/ native watercraft.com, 53710, 42 cfr 412.106, [url="http://wsaalaska.ifrance.com/42-cfr-412.106.html/"]42 cfr 412.106[/url], http://wsaalaska.ifrance.com/42-cfr-412.106.html/ 42 cfr 412.106, %-((,
message from: No_limits92
We consider these assertions in turn. ,
message from: Miss92
Obama, imo, is the best vehicle we have to break this travesty wide open. ,
message from: tuxgqwcy
j0SEyd jymdfyugkbao, [url=http://gsbgnxqyygig.com/]gsbgnxqyygig[/url], [link=http://clnuoawzwojq.com/]clnuoawzwojq[/link], http://szdsxpjozbxq.com/
message from: Erin Tye re:tarceva
I was trying to respond to an e-mail sent to me by Briony but it would not go through, so I hope this will suffice.
I apologize for not getting back to you sooner. Isaiah is doing well, but is a chronic cancer patient that floats from one trial to the next (he has not responded to any other chemo or radiation). He took Tarceva along side Temodar from September 2004 to April 2006 as a participant in a Phase I trial. He was one of only a few children who received the drug, and all of the patients in the trial were terminal patients. I do not know how any of them responded. It was given to him as a crutch to extend his life by a few months. To everyones surprise and delight it worked much better. He had minor shrinkage while on it, but was only expected to make it another month or so, and was stable for 18 months. He had another tumor grow in April of '06, and was taken off of Tarceva and Temodar then, and put on Cloretazine. We just stopped the Cloretazine due to some damaging side effects, and will start something new when/if a new tumor grows or the existing ones get bigger. Isaiah has been in treatment since September of 2000, with only a few breaks in between. He did not have any serious side effects while on the Tarceva, and required no hospital stays inpatient or outpatient. We were able to give it to him at home in a liquid form at first, and then a pill form. He took it everyday once a day, and 5 days of Temodar with it every 4 weeks. He continued to attend school the entire time with no major drops in blood counts or nausea. He did have some mouth sores and diarrhea but nothing major. If you would like more detailed info just e-mail me directly, or I would be happy to give you my telephone number to talk with you directly.
I will keep your godson in my prayers and hope you see estounding results!
Best Wishes,
Erin
message from: Leanne Robertson - Australia
I'm trying to contact the Lilley's directly, their email link up is not working for me. My daughter has diencephalic syndrome, please contact me. leannepisasale@dodo.com.au www.caringbridge.org/oceania/sophiejay
message from: Briony
Some useful advice from a parent on the PBT Chat Board:
- focus on the short-term and fill each day with as many memories as possible.
- take care of yourself. This means you need to take time to re-energize yourself by getting away. (I try to get away at least one time each week).
- reduce the stresses in your life as much as you can (we have our own business and have cut back significantly in order to reduce our stress).
- find an outlet for your grief and anger
- realize that dealing with brain tumors is a process. You will have good days and bad days, highs and lows. Celebrate the good events because we never know what is around the corner.
message from: Briony
Peter - thanks for telling us your experience about St. Georges hospital. I have also heard very good things about the doctors at this hospital - in particular Henry Marsh who I saw a tv documentary about. We will do some investigating into whether anyone there can help Gus with his particular condition.
I'm sorry to hear that your daughter was so ill - I hope she is strong and doing well now ?
Thanks again and best wishes to you and your family.
message from: Briony
Hi Jennifer,
I'm really sorry to hear that your son lost his battle last year...thank you for being strong enough to help others even after your loss, it must be very hard...
Thanks so much for posting this info onto the site, along with the link to the Dr in Iowa. It's such a comfort to know that so many people out there are thinking of Gus and helping so much.
I will certainly follow up these links for the Lilleys, thanks for your prayers....
Best wishes to you,
Briony.
message from: Jennifer Williams
I am so sorry to hear of Gus's Diagnosis. My son Jacob died last year after a three year battle with a rare cancer. I decided to do a little research for you for links to sites that may help you. I went to a site called The Never Ending Squirrel Tale and found some links:
Astrocytoma Yahoo Group
Children's Brain Tumor Foundation
Pediatric Brain Tumor yahoo group
We Can-Pediatric Brain Tumor Network
I sure hope these help, Gus and his family will be in my prayers.
Jennifer
message from: Peter Samengo-Turner
My Daughter was born with VARTAL Association (Vertibrae, Aorta, Renal, Anal, Limb) a rare condition that inhibits growth of the various bits of the body during their formation in the womb. It is called by other names as well.
My baby's life was saved (it was touch and go from the first) by a Mr. Caps, the surgeon in the neonatal unit at St Georges Hospital in Tooting.
I'm afraid I cannot offer any help or advice other than to try the staff there, they were just so good and proffessional.
I wish you all the best in such dificult circunstances.
Regards
Peter
message from: Susie Clackson
I have just received an email from Nathalie Bristow telling me about Gus. I am so sorry. I had a son with Duchennes Muscular Dystrophy and know only too well the traumas of going through the diagnosis process and facing the horrible truth of incurable disease.
However, life is so precious and the human body has so many resources and I am full of admiration for your positive attitude. I have sent your email and website on to anybody I think might help. Meanwhile my own advice would be to find a good homeopath to support Gus through the chemo (there are a lot of remedies which help to counteract the less desirable effects of the drugs) and also to keep him in the best possible general health for as long as possible while you search for other answers.
This certainly helped with Jordan and although sadly the cure did not come in his lifetime we beat the odds for several years and he enjoyed a full and wonderful life with us.
Homeopathy can also help you and the familly remain as strong and fit as you will need to be to cope with everything.
I am now living in France, in the Var, phone number ****, Do give me a ring if you ever feel the need for a chat.....Caring for a child with severe problems is very tiring and I wish you lots of strength. I will pass on any informtion that comes my way.
With love and best wishes and a big kiss to Gus....Susie Clackson
message from: Administrator
Please leave any advice or support group information here.
To leave a message click here
To view the other forums click here.
