Rachel Smith

Since Rachel’s diagnosis, many friends and family have raised money in Rachel’s name, as a means of demonstrating their support for Rachel and our family. £180,000 is the approximate Team Rachel total so far – THANK YOU ALL SO MUCH, whether you organised, participated, supported or sponsored any of the below events, we are so grateful. See below for the Roll of Honour! ie list of who has raised money, and for which charities:

Leukaemia Research
Nick Shirley Xtreme Terrain Triathlon £8006
Sinead Furber Family Bike Ride, Norfolk £1,200
Harriet Phillips/Bigwigs House sale (jewellery etc) £566
Rachel’s Ballet school Donations/proceeds from show £1,000
Debbie and Carl Christon House sale £525
Richard Boothroyd Ride for Rachel £2,715
Hector Dickson & friends Ride for Rachel (Scotland) £3,000
Gaddesby School Donations, Harvest Assembly £227
Angela, Jenny and Charles -Donations in memory of GG/Win £980
Mike & Kate Foster-Smith plus friends, Twyning Open Gardens £5,700
art show £300
Rachel's Great Banana Ball/Rushton Hall £54,700

When You Wish Upon A Star
Jason Whowell Half Marathon £600
Joe Cannon (Mum Kate) Donations instead of gifts
for his 6th birthday party £290
Sophie and Olivia joint birthday party
donations instead of gifts £600


Anthony Nolan Trust
Barney Leaf Half Marathon £515

CLIC
Brian Piper/Golden Fleece Sponsored Christmas Carols £450

Ward 27 LRI
Geoff Smith (‘Poppa’) Charity Golf Day £6,500

McMillan Cancer Support
Martin Smith/et al Ride for Rachel £89,900

Wishes4Kids
Martin Smith/et al Ride for Rachel £1,000

Children With Leukaemia
Gaddesby School Children’s Marathon Challenge £1757



Rachel was diagnosed with Acute Lymphoblastic Leukaemia on February 11th, 2005, 6 days before her 4th birthday. It still seems inconceivable that our gorgeous, bouncy, happy little angel could have such a disease.
We have been so overwhelmed by everyone's support since Rachel's diagnosis, that we just had to get a website together to thank you all for your support and of course the presents you have all sent to our gorgeous girls!!! So, a heartfelt thank-you from Paul and I to everyone who has sent us a letter, card and entry in the guest book. It is wonderful to have such support from our friends, far and wide: it has been very difficult to find the energy to discuss details with family and friends, we have been in shock and grieving for our healthy child. So please accept our apologies if we haven't returned your call or letter, it isn't that we don't want to, rather that it continues to be so emotionally exhausting to re-live the ongoing events. Most of our energies are spent trying to maintain as much normality in Rachel and Isla's lives as possible - not trying to ignore or deny Rachel's condition, but trying to keep our little family together. .

Journal

Friday, December 19, 2008 3:25 PM CST

A lovely friend of mine sent me this report, on the UK ALL 2003/2009 which is the treatment trial that Rachel, and all ALL children have been treated on (with exceptions) since 2003. This is a groundbreaking trial, funded by Leukaemia Research - so accurate that not only will it become standard treatment for all leukaemia patients (children), it is being extended to all adult ALL patients too.
Basically, this report is saying that for children with high MRD (Rachel, Josh, Ben, Lucy, Jemima .....many others .....) the randomisation to Reg C is showing that the relapse rate is much lower than previously. It's a bit technical, but stick with it ....

Thank you, Leukaemia Research, for saving our child's life.....
"
Robert J Cutting1*, Sue Richards2*, Jeremy Hancock3*, Nicholas Goulden4*, Christopher D Mitchell5* and Ajay J. Vora6
1Department of Haematology, Sheffield Children's NHS Foundation Trust, Sheffield, United Kingdom
2Ctsu, University of Oxford, Oxford, United Kingdom
3Bristol Genetics Laboratory, Bristol MRD Group, Bristol, United Kingdom
4GOSH, London
=0 A5Department of Paediatric20Oncology, John Radcliffe Hospital, Oxford, United Kingdom
6Dept. of Pediatric Hematology, The Children's Hospital, Sheffield, United Kingdom
The BFM group (Blood Nov 2007; 110a: 585) has reported that monitoring of post-consolidation MRD kinetics identifies a very high risk (MRD VHR) group of children with ALL, who might benefit from novel therapy and first remission allogeneic transplantation. We have compared the effect of consolidation regimen on post-remission MRD kinetics using a standardised quality controlled RQ-PCR assay of Ig and TCR patient specific rearrangements with a reproducible quantitative range of 10-4 in an attempt to identify a MRD VHR group, similar to that reported by the BFM.
UKALL 2003 is a randomised trial testing whether treatment can be stratified by MRD at weeks 4 and 11 in children and young adults (up to age 25 years) with ALL from the UK and Ireland. Initially, patients are stratified by NCI criteria, cytogenetics and early morphological marrow response to receive three (Regimen A) or four (Regimen B, additional daunorubicin) drug induction. Patients with MRD >10-4 at end of induction (EOI) (MRD High Risk) are randomised to continue previously assigned therapy (regimen A or B) or receive the more intensive regimen C. The regimens are of escalating intensity (A¡úC) an d include either CCG modified BFM (A), standard BFM (B) or augmented BFM (C) consolidation, the latter containing pegyla ted-asparaginase (Peg-ASP; Oncospar, Medac UK, 1000 units/m2 i.m. days 16 and 44) and vincristine (1.5mg/m2 i.v. days 16, 23, 44, 51) in addition to standard BFM consolidation. Only patients with high risk cytogenetics or day 28 BM3 marrow are eligible for CR1 transplant.
Of the134 patients with MRD > 10-4 at EOI, 101 were MRD negative, and 33 had detectable disease post-consolidation therapy (16 low MRD positive; <5x10-4, 17 high MRD positive; >5x10-4). Patients who received augmented BFM consolidation had more rapid clearance of MRD (Neg = 85%, low pos =7%, high pos =8%) than those who received CCG modified or standard BFM consolidation (Neg 65%, low pos =17%, high pos =17%) at week 11 ¨C 15 of treatment (P=0.03 independent of age and white cell count). With median follow-up of 27 months, ten patients have relapsed, 7 in the negative group (3 year relapse Free Survival [RFS] 91.2% se=3.5) 1 in the low positive group (RFS 92.9% se = 6.9) and 2 in the high positive group (RFS 85.7% se = 9.4). The latter two were recipients of the lower intensity Regimens A (isolated CNS relapse) and B (isolated marrow relapse). The small numbers of post-consolidation high-positive patients do not permit us to identify a VHR group with a worse outcome than those patients with lower MRD levels. However, the early relapse risk (<15% at 3 ye ars) for such patients appears to be much lower than that reported by the BFM group (>50% at 3 years). Differe nces in treatment protocol before and after consolidation may account for this disparity.
In patients treated on the current UK childhood ALL protocol, we are unable to identify a VHR group on the basis of post-consolidation MRD. Augmented BFM consolidation obtains more rapid clearance of MRD than other regimens which, with longer follow-up, might be expected to translate into a better EFS.
Disclosures: No relevant conflicts of interest to declare.

Hospital Information:

Leicester Royal Infirmary

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