August 2012 - Child Cancer Foundation
Transcription
August 2012 - Child Cancer Foundation
sharing AUGUST 2012 INSIDE: One Day for Child Cancer I NS IDE: ALEX & E SIONE & JEROM TRUE A DREAM COMES WHAT A MOLLY CUTE TE AM UK KATIA & ANO A UNIQUE BOND ! a i d u a l C u o Y k n a Th e ador for th ild ambass ch g in rk o -w ng and hard July. s the amazi a n through w y ra e h d n ic a h h w l a e p p ere feature A Claudia C d Cancer ighlights w il H h l. TV C a e r e p th fo p g y a g the r visitin One Da b promotin Billing afte jo a on e d n m ro a p so m a e A e w an a with ing lik Claudia did an’s Weekly ne, perform m e e o sc th W a d rt in a n g st la n Zea r to peari in the New e ball beare eet and ap ortland Str acting as th h d aitakere. S n e a W a m in d m n m a ra prog with Am sts Stadiu g u in Tr t rn a o e M m d o all up ga TVNZ’s Go at the netb und ANZ C unched live rmed la tball final ro e s fo a n re s w o ic ” h y st a w y M Takacs of One D a ik te u Er in d n M a n Cotto and to ss song “A ith cancer Harper, Joe The TrueBli io children w latini, Keri r A fo n a g TV and rad g n e n o so M romoted game by rform the p e e p ly e d th n id g a n w ri s te ise du ng wa to wri especially p to fundra eal. The so u p p g A in y n a . g g D si n e ri le Sha eop e On ations of p November promote th e in registr ised in the rg ra l su ta a to to l a d n and le on a fi g Amanda, update you r in thankin l e ’l h e in W . jo th to n mo the month ’d like in making me and we rk ti o t w a n. re rd g a h a d their r Foundatio Claudia ha Erika for all hild Cance d C n a e e th r Jo , fo ri l fu Megan, Ke and success for Claudia so special Claudia and her sister Arielle, were invited by CCF ambassador Jerome Kaino to see the Rugby World Cup he helped the All Blacks win last year. Claudia at the M ystics fin ANZ Cup al round game in Aucklan Amanda d with and her Mum Lis a. One of Claudia’s photos from her shoot with Megan Alatini and Amanda Billing for the One Day for Child Cancer posters. Adding h er signatu re to the fame at the TVN wall of Z Good Morning set. anda Billing’s Checking out Am tfits at the ou tts Dr Sarah Po set. Shortland Street Presenting flowers to Lady Blund at her 90th ell birthday w ith sister A rielle. TrueBliss performing at the Mystics ANZ Cup game. CEO Corner Welcome to the winter edition of Sharing. It has been a very busy time for the Child Cancer Foundation. In the past few months the Family Support team has been managing a high number of new referrals and the hospitals have been very busy coping with the usual winter bugs that make winter that much tougher for everyone. We continue to do our best to support you and have some exciting developments to report. The first is the opening of our beautiful new Arrowtown Holiday Home, on the 21st of June. The new house has been purchased by the Child Cancer Foundation Otago/Southland Accommodation Trust, (OSAT). The Trust was set up in the 1980s to provide accommodation for Otago and Southland children with cancer and their families who were undergoing treatment in Dunedin at the time. The property replaces an older house in Williams St, Queenstown, which was originally acquired with the financial support of Professionals Real Estate Group. The new Arrowfield Mews property is a warm and sunny townhouse and is already in use. The first family stayed over on the 23rd of June. Special thanks to Jim and Karen Boult for all their hard work on this project. The other exciting project completed in July I’d like to talk about is our new song - a first for the Foundation. The all-girl band TrueBliss reformed to write, record and perform a new song called “A Minute of One Day,” for the launch of our One Day for Child Cancer Appeal in July. The song was a key component of the campaign and the song is now on iTunes - all proceeds from the song will come to CCF. The song is beautiful - TrueBliss members Megan, Keri, Joe and Erika did a stunning job. It has now been sent to the Family Support team. You can hear it at the Family Places and at gatherings. It is especially for all children on the cancer journey and their families. Ask your Family Support Coordinator if you would like to hear it! Here is a link to the girls performing live on Good Morning: http://tvnz. co.nz/good-morning/extra-090712truebliss-video-4961595 Finally, I hope you enjoy your magazine, we have some lovely family stories to share and some beautiful photos, stories and art contributed for our new kids’ section. Thanks to everyone for sharing. Sarah Thomson CEO - Child Cancer Foundation Contents Best Mates – Alex and Molly 4 National Appeal Child Ambassador Pictorial10 Sean’s Canine Buddy 5 Kids’ Section 11 Giving Back – Rama Davis 6 Health Professionals’ Report 15 A Unique Bond – Katia and Anouk 7 LEAP Update 17 Our New Parent Support Pilot 8 Regional News 19 Bartercard Foundation 23 Family Support - Meet Our Central Team 9 Cover main photo Amanda Billing, Claudia Chaney and Megan Alatini. Photo: Kim Bartley. Child Cancer Foundation • Sharing 3 Alex’s Best Friend Helps Her Through Masterton Mum Louise Hight has a positive philosophy when it comes to helping her four-year-old Alex tackle the child cancer journey. “I believe if you give them the space to do things they do turn into strong kids,” she says. Louise and her partner Scott found the perfect way to put her approach into practice last Christmas when the family made a dream come true for Alex, by buying her a beautiful little grey Welsh Mountain pony called Molly. Molly has become a major tool in helping Alex get through her tough times. “Molly has given her something to look forward to, someone she can spend as much time with as she likes, whether she is feeling sick or not.” Alex was diagnosed with Acute Lymphoblastic Leukaemia in October, 2010. Like all children on the cancer journey Alex has times when she has to be isolated from other children when neutropenic, but she never has to stay away from Molly. “I don’t believe in wrapping her in cotton wool and keeping her in her room,” Louise says. “Of course we are careful about what Alex eats and keep her away from other people on trains for example, but Molly is someone Alex can see whenever she wants.” Molly calls out to Alex, when she goes out to her paddock to catch her. Alex puts her on the family’s float herself, and uses a bucket to stand on so she can reach high enough to put her pony’s bridle on by herself. 4 Sharing • Child Cancer Foundation Alex and Molly. “Alex’s favourite colour is pink, so she has a pink bridle and a pink saddle blanket,” says Louise. “They have touched quite a few hearts, those two.” Alex is a bold little rider, already wanting to try jumping and is the youngest member of her local hunt, which she goes along to with her mother, on a lead rein. She also does a ballet class once a week, and goes to Hadlow Preschool three, half days a week, when she can. Alex adores her little brother William (2). He is the one person guaranteed to put a smile on her face, when she is in hospital! “She is one determined little girl!” says Louise. And one to watch out for in the future…. The Power of Pet Therapy The child cancer journey can be a very lonely one for children who find themselves suddenly pulled from their normal routines of hanging out with friends and family, going to school and playing sport or following other interests. The Pennells family from Darfield, Canterbury, found a way to help ease the isolation by providing 10-year-old Sean with a special companion soon after his diagnosis with Acute Lymphoblastic Leukaemia (ALL), in December, 2010 – a beautiful rescue dog called Rosco. The partnership has been so successful the family would like to share their experience with others on the cancer journey….Mum Janice explains. Sean is an amazing, brave child. He was diagnosed with ALL in December 2010, after we took him to the doctors following a period of lethargy and a loss of appetite. Sean was 10 at that stage, an active boy who loved his sport, his animals and was finishing his last year at primary school. He had just attended school camp and the school’s prize-giving when “the bomb hit’. We spent 10 days in hospital and were discharged Xmas Eve – it was the greatest feeling to be home together, even though Sean spent most of Christmas feeling nauseous and tired! In January it was Sean’s birthday and together we searched for a special gift. We looked for a dog as we believed this would provide a companion for Sean through his ongoing treatment and chose Rosco, a Collie cross rescue dog who had been picked up on a river bed. We chose a rescue dog to give an animal a chance and because it was relevant at the time. We’d also been warned about getting a younger puppy because of the risk of infection for Sean through scratches and sharp little teeth. At first Sean was desperate to walk his dog but wasn’t strong enough to take him on a lead and we wondered if we had made a mistake. But you should see him now. The two have an unbelievable bond and it is definitely Sean’s job now to take Rosco for his evening walk. He sleeps on Sean’s bed in the evening and is his morning wake up call. Rosco is very responsive and mischievous and Sean is always saying to me “we made the right choice, didn’t we Mum?” Both Sean and his sister Emma are more enthusiastic to go out places as a family if they can take Rosco. Searching for a new dog and discussing possible breeds was a great icebreaker during the initial weeks in hospital when we met many new people and underwent numerous tests/procedures. Rosco continues to be a great conversation point and is a way of distracting Sean during his ongoing treatment. Sean even took Rosco to the Child Cancer Foundation Pet Day and the Kidsfest Dogs Day Out, where Rosco won an award for his amazing singing!!! Sean has a Sean and Rosco during treatment Sean and Rosco now! very giving nature and has been keen to assist with CCF events, the Kmart trolley dash, sausage sizzles, as well as creating paintings for auction (he is a good artist). Most recently, last November, he and his dad Reg, participated in funrazor where he was invited to help open the event at Addington Raceway. Reg has also recently joined the local Branch Committee in the hope that we can be part of supporting other families. Throughout the last 12 months CCF has been a great source of support. During our stays in hospital there was always a familiar face from CCF to listen to and offer reassurance and help and we have received petrol and café vouchers which were invaluable during our stints in hospital. Sean is now back playing tennis (interclub), swimming and returning to most of the activities he did prior to his diagnosis. We are extremely proud of how he has handled his cancer journey so far and how he accepts the continued treatments. He made a positive start to the year at Darfield High and even competed in the school swimming sports and triathalon, which is just fantastic considering where he was at this time a year ago! He is on daily oral chemotherapy and monthly steroids and intravenous chemo. If there are no setbacks Sean’s treatment will finish in May 2014! A wee way to go yet! We do realise that not everyone on the child cancer journey is in a position to have a dog, however we would absolutely recommend it. Rosco has been a hugely positive element in Sean’s recovery – an unconditional friend and ongoing source of distraction and entertainment. Child Cancer Foundation • Sharing 5 A Story of Giving Back Fourteen-year-old Rama Davis left her treatment for Acute Lymphoblastic Leukaemia behind over four years ago, but she has not forgotten the lessons she learned on the way. Now flourishing at Whangarei Girls High School, Rama is enjoying giving back right across the community. She is a wonderful, generous inspiration. Here’s her story, in her own words. In October 2005, when I was 8 years old, I was diagnosed with ALL (Acute Lymphoblastic Leukaemia). It’s a type of cancer that occurs in the blood cells, but you know that :) In December 2007, I finished my treatment. I was doing chemotherapy so I was over the moon when I realised I didn’t have to do any more!! I’m 15 and I attend Whangarei Girls High School. I’m in my second year now and it’s going well. High school is pretty awesome but it just came around so fast!! I’m doing well in my classes and my favourite subjects are Drama, French and English. Science isn’t so bad either... :) At school, I’m part of the citizenship committee so we fundraise for things like cancer organisations and Anzac Day. 6 Sharing • Child Cancer Foundation After I finished treatment, my mother decided to give back to the community and say thank you for everyone who supported us when I was going through treatment so we started to do volunteer work at local charity shops, like St Vincent De Paul, Red Cross and the Anglican Twice Round shop. We also did voluntary work at the Whangarei Central Library for a bit, which I enjoyed because I LOVE books. (actually.. love is an understatement!) When I’m older, I will definitely consider doing volunteer work. Overseas, if I can too. I enjoy helping people because I know how much having someone there for you means when you’re going through a tough time. Every little bit helps. My cancer has given me a positive look on life, and in a way I feel privileged that I got to go through what I did, because it taught me some very valuable things about life and I got to meet so many amazing people that I won’t ever forget. When I leave high school, I want to go to university to study journalism. It’s my dream to travel the world as a journalist, meeting new people, helping people and seeing how other people live and what they have to go through every day. Thanks! :) (: Twins in it Together LEFT: Katia lying with Anouk in hospital. BELOW: The twins showing off their certificates. Four-year-old Anouk Collins has had a little guardian angel at her side throughout her journey with Neurofibromatosis – her precious twin sister Katia. Katia has shared her hospital bed, sat with her through nausea and wiped her face while she falls asleep. The Papamoa twins were always close, but after Anouk fell sick their bond become even stronger. Anouk was diagnosed with Neurofibromatosis, a condition where nerve tissue grows tumours. She developed an optic glimoa, (a tumour behind one of her eyes), and recently finished a year of chemotherapy. She is now being monitored every three or four months. The twin’s mother Sara is very proud of the empathetic nature Katia has developed. Anouk has felt huge comfort in having her sister right beside her Mum Looking for Other Families With OMS throughout her hospital treatments. “Anouk is fine as long as she can see Katia,” she says. “And at home in the middle of the night when Anouk has been sick with nausea Katia is there beside me and taking over when I am not there. “The girls have always been close, sleeping beside each other, but this has brought them even closer.” Anouk has coped remarkably well with her treatment and is now back at daycare, where she recently found her turn to look after her sister. Katia fell over in another room and Anouk saw her and went rushing through to comfort her and help her up. What a gorgeous team! Kiera Atiga is two years old and has been diagnosed with Neuroblastoma and the rare neurological disorder Opsoclonus Myoclonus Syndrome (OMS). The condition is so rare it only affects as few as 1 in 10,000,000 people per year. It affects 2 to 3% of children with Neuroblastoma. Kiera’s early symptoms of OMS were vomiting, clumsiness, a widened gait and her eyes twitched when she was sleeping. Originally from Hokitika, the Atiga family is now living in Auckland to be closer to treatment. Previously they had a four hour drive to Christchurch Hospital. Kiera’s mother Rayma would love to hear from any other families who have children with this rare disorder, so that she can hear other people’s stories. If you can help please email [email protected] and she will put you in touch with Rayma. Child Cancer Foundation • Sharing 7 Parent Support Pilot Off the Ground A friendly face familiar to many in the Auckland region is spearheading the new CCF Parent Support pilot. Chris Steel has been on the Auckland Branch Committee for nine years and is the current Chair. To add to this role she is now employed as the Auckland Branch Volunteer Coordinator as part of a pilot project to develop more parent programmes in Auckland. The Auckland Parent Support Pilot is a collection of parent - led activities delivered by parent volunteers to broaden the support and coping mechanisms of children and families experiencing child cancer. Chris has a close affinity to child cancer and knowledge of the journey. She is a bereaved parent, having lost her son Joshua to cancer, in 1998. Chris is thoroughly enjoying her current role based in the Family Place. “I feel like I am in a good position to understand what the journey is like and to help,” says Chris. “The Parent Volunteer Pilot runs alongside the Family Support Team. CCF started as a volunteer organisation and as it has evolved as a charity we are lucky to have paid professionals also, but parent volunteers are still a core part of the organisation. The Family Support Team and the Parent Branch Volunteers are two passionate groups of people all working towards a common goal - to support children and families and ensure they never feel alone.” Auckland region. She has also created a parent questionnaire inviting parents to comment on the support programmes they would like - whether it be more information, support groups or opportunities to connect with others. After the questionnaire has been completed Chris will develop a volunteer programme and will start recruiting for volunteers. If you have any questions about the programme please feel free to contact Chris on [email protected]. Phn: (09) 303 9887, or 02130 3369 or pop into the Family Place on Tuesdays, Wednesdays and Thursdays if you are in Auckland where you’ll find her in her office. Chris is currently updating the database of families supported by CCF in the CanTeen Reminder A reminder that once children with cancer turn 13, they are able to access the support of CanTeen. CanTeen is for anyone between the ages of 13 and 24 who is living with cancer. The organisation aims to provide a relaxed, friendly and fun environment where young people can share their thoughts and feelings with other young people whose lives have been affected by cancer. CanTeen’s mission is to support develop and empower young people living with 8 Sharing • Child Cancer Foundation cancer through a national peer support network, and professional educational and recreational programmes. CanTeen was established to ensure that no young person in New Zealand living with cancer should ever have to feel alone. Contact your Family Support Coordinator for CanTeen’s contact details. * FA M ILY S U PPO RT * FA M I LY S UP P O R T * FA MILY SUPPO RT * FA MILY SUPPO RT * FA MILY S U P P OR T The Family Support Team In this issue we complete our trip around New Zealand introducing you to the Family Support teams in different regions. Our final team is the Central team. We are also delighted to welcome two new Family Support Coordinators, Bev Randall in Manawatu and Supriya Maharaj in Auckland. CENTRAL NEW STAFF Sally Black Family Support Coordinator Tracy Ward Family Support Coordinator I began working for the Child Cancer Foundation in 2009 when I completed a placement there for my studies towards a Bachelor of Social Work. I was fortunate to be employed by CCF for a further six months following my placement but moved on in 2010 to complete my studies. Since then I have completed my degree and have worked with Compass Primary Health Care developing and running the Kaiawhina service. Within this role I received referrals from the Outreach Nurses to work alongside families and individuals in the community. The aim was to reduce barriers to healthcare by addressing social issues. I left this role to return to the Child Cancer Foundation last year, and have been in my current role for 10 months. I started with CCF in September last year and am working 20 hours per week as a Family Support Coordinator. This fits in perfectly alongside my other role as Mum to two amazing daughters aged 6 and 12 and an awesome son aged 11. I was drawn to working with the Child Cancer Foundation due to my passion for working within a health setting and working with families. I soon discovered the huge privilege it was to work alongside and support families who are impacted by childhood cancer. Immediately prior to joining CCF, I ran groups for children who had experienced family violence. I wasn’t intending on changing jobs, however when the opportunity arose to work with CCF I had a very strong sense that this was the perfect fit for me. I’m enjoying working for an organisation that is so well regarded and is doing highly valued work. I get huge job satisfaction from working alongside children and families to provide support. I love working in a small professional team where everyone, including our dedicated volunteers, has a passion for CCF and what we stand for. Every day I come to work not knowing who I may meet or what my day holds, but I love that everything stops when a family comes into the Family Place and we get to chat with kids, parents, grandparents, and play and be creative. My career in the helping profession began during my early university days in Auckland when I volunteered with the Women’s Refuge. I have both counselling and social work qualifications and have been lucky to work overseas in Canada, Belgium and Australia for a variety of organisations. I have done all sorts of things from presenting at workshops through to midnight shifts on crisis phone lines. You can also always find me on a committee for one of the many school or sporting activities my family is involved in. What I most enjoy about my role is working alongside children and their families and I feel privileged to share some parts of their journeys. Every day is different, and every family is unique! The generosity of people who give their time and resources to CCF reminds me to maintain my faith in the wonderfulness of human nature and I’m grateful to have the chance to see this first hand. Manawatu Bev Randall Family Support Coordinator Bev began her new role as Family Support Coordinator in Manawatu and districts in May. Bev is warm, accepting, and relates well to a wide range of people. She has life experience and involvement in community activities and is a valued volunteer for Victim Support. She especially enjoys interacting with children and young adults and is very much looking forward to being part of the Child Cancer Foundation. Auckland Supriya Maharaj - Family Support Coordinator Supriya replaces Helen Frost as Family Support Coordinator for South Auckland. Supriya joins the team with a post graduate qualification in Health Science and experience working with families in hospital, as well as young people and families in the community in her role as Senior Youth Practitioner at Odyssey House. Child Cancer Foundation • Sharing 9 * ! t i d i d e W success. was a great th n o M l ea p Ap donors, hild Cancer s, sponsors, er te n lu Our 2012 C vo r ou k you to all is possible. A huge than who made th f af st d an milies f partners, fa ring Beads o moments du e m , o es es ti vi aw ool acti d some ents and sch We capture ev y an m e and th e child s of our littl Courage Day eous photo rg go e and Loren i m an so irik Punw including G y, ce La ey went. Hannah erywhere th ambassadors ev s rt ea h d capture rite photos. Harvey who of our favou e m so e ar ! Here Thanks guys Hann a Imog h Lacey a en w nd he it from the B h the Two r sister reeze Robb . ies Hannah L with her acey v own pos ery ter outside a Buyers k Gold iosk. Hannah Lacey visiting Toni Street and Rawdon Christie on the set of TVNZ’s Breakfast. Girik Punwani and his sister Simran at his photo shoot. Loren Harvey gets some tips from Jo Watson at her shoot. d her little Loren Harvey an photo shoot. r he at ily Em sister Jerome Kaino with Hannah Lacey and Sione Mataele at the Rotary Regatta, Auckland. 10 Sharing • Child Cancer Foundation Loren, Girik and Hannah at the Steve Price Night of Courage miniature sulky morning. * KIDS’ PAG ES * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGE S * K IDS’ PAGE S * K IDS’ PAGE S * KID S ’ PAGES KIDS’ PAGES! Your time to shine Child Cancer r for the One Day for As child ambassado land, has had ia Chaney, from Auck Appeal in July, Claud r story of one he is periences. Below ex ul erf nd wo me so nd Street. , her visit to Shortla of her favourite days Claudia Chaney - One Day Ambassador for the Child Cancer Foundation Today as we drove up to the gates of the Shortland Street set my heart was pounding with excitement. Mum spoke into the intercom “Claudia Chaney is here.” The receptionist said “drive on through.” I could hardly breathe as we walked through the door and into the building. We waited in the reception area and then someone came out and said Claudia Chaney may now come through. We walked down a very long corridor and at the last door we stepped into Shortland Street. I was greeted with the sight of all my favourite stars. Amanda was getting ready and was in her fluffy white dressing gown. She always looks so beautiful. In my head I was thinking oh my gosh, I can’t believe this. I am so so lucky! I met most of the cast, was able to see all the sets and got a behind the scenes look at how it is all put together. I got a small look into some of the future storylines, but cannot say any more! Every one of the people involved with the Shortland Street set was so very nice. My friend Amanda Billing showed me her dressing room, which she shares with Jacqueline Nairn (Wendy Cooper). It is very relaxing with its fairy lights and pictures and bits and pieces...can I have a room like that please! Amanda said that she is going to make me a hat and Jacqueline is going to help her. That is so cool!! Amanda is so nice and I loved hanging out with her. She also showed me all her clothing that she wears on Shortland Street, then we looked at some of the other cast members dressing rooms. I talked to Michael Galvin - he was so friendly. Can’t believe such a nice man would be in prison! Free Dr Warner! Amanda Billing here, Child Cancer Foundation Ambassador July has been actionpacked for us, hasn’t it? My new friend Claudia Chaney and I had a whirlwind start to the month with a visit to the Shortland Street set, an interview on Good Morning and an appearance at a thrilling Mystics game where Nineties pop group True Bliss sang our new flagship song , “A Minute of One Day”. Phew! People have really got behind the One Day for Child Cancer campaign, a radio DJ in d Christchurch raised $7,500 by saying he’ look after a whole daycare centre full of kids for a morning! Brave man, huh?! People get really creative when something really inspires them. It looks like the “One Day” theme really inspired some of you guys! I love the photos you sent in. Thanks for sharing your creativity with us all. I got to go into the makeup room, a girls dream...had a bit of foundation put on and then a couple of minutes later I went into the nurses’ station set. I was supposed to be just a patient in the background with an orderly pushing me into a room but the Director said I needed to have a bit more of a part so Mike Edwards (Zac) made something up on the spot and talked to me. It was so much fun!!!!!!! Mum told the director that I had made the scene...mum!!!!! It took a while to get the part done but I didn’t mind that was the BEST DAY EVER!!!!!!!!!!!!!!!!!!!!!!! Thank you everyone who helped me have such an amazing day. Thank you Amanda for being you. I will never forget this experience. RIGHT: Claudia in the cast makeup room for a touch up before going on set. FAR RIGHT: Amanda shows Claudia some of her favourite Dr Sarah Potts clothes. Child Cancer Foundation • Sharing 11 * KIDS’ PAG ES * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGE S * K IDS’ PAGE S * K IDS’ PAGE S * KID S ’ PAGES Fam ily Art Day - Dunedi n Fam ily Pla Sam Bonney 7, Clare McAslan 13, Tenzin Johnson 9, Sam Bonney 7, Holly Bonney Heather McAslan, 11 ‘Sharin g’ Cover Des ign iful cover Kelcey Roberts, from Auckland, designed this beaut look. could zine Maga g Sharin next as an example of how the of more rage encou to you to it show We thought we would some need We issue. mber Nove next our for you to have a go competition guys! ce Karvarn Pettigrew, 9 rew, 5 Maddix Pettig Fundraising for Child Cancer I read a school journal about some children picking lemons and making lemonade, they then made money from selling it on a road side stall. So I decided, as we have a big feijoa bush, I would do a similar project but with the masses of feijoas we had. My brother Henry (6) and sister Rosa (3) and I all worked together to pick the feijoas up and separate them into individual bags of 1kg each. I worked on a sign to attract people to buy the feijoas and we decided that the money would go towards Child Cancer. Instead of a road side stall we decided that the best place to sell the feijoas was outside Flaxmere Pharmacy, which my Dad owns. First there were 22 1kg bags, which took only 10 minutes to sell and raised $35. The second time we collected 20 1kg bags and six 2 kg bags (sold for $2). Fifteen minutes later there were none left and they had raised $35. The third time I went to the Pharmacy with Dad and sold the rest for another $30. This amounted to $100. I hope the $100 raised will go towards helping some children with cancer and improve their lives. Jessica Klingender (7) RIGHT: Henry, Rosa and Jessica Klingender with their successful project. 12 Sharing • Child Cancer Foundation * KIDS’ PAG ES * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGE S * K IDS’ PAGE S * K IDS’ PAGE S * KID S ’ PAGES Sione Mataele completed treatment for Osteosar coma in March, 2012. Since the n he has been lucky en ough to meet one of his rugby idols, up close, not once but twice. Here is his story. Counting His Blessings Just being out of hospital and back with the family has actually been a blessing. I just want to give thanks to the man above for giving me the strength and courage to pull thru, in that time of struggle and to my family, doctors, nurses and everyone who were there by my side. I was diagnosed with Osteosarcoma (bone cancer) early June 2011. I had my first treatment which was Chemotherapy on the 16th of June 2011, I later on had surgery on the 22nd of September to remove the cancer cells from underneath my knee cap of my left leg, I had my final treatment earlier this year on March 16 2012. Being back at school has actually been a really good experience for me, the teachers are so understanding and just being able to see my friends has been a relief. Even though I am behind in some of my subjects, I feel lucky because my teachers are willing to give up their time to give me some after school tutorials. Seeing the World Cup up close was an experience I never thought I’d get. It was very shiny and dazzling. It made me feel like I was playing for the World Cup too just by having a photo with it and I also felt like a star. A priceless experience especially knowing that it’s a cup that has been around for years. A moment I will always treasure, especially when your own country wins it. BELOW: Sione and Jerome Kaino, with the World Cup. Now that I am out of hospital I have been spending a lot of time playing on my Ipad which I received from Make a Wish New Zealand, jamming and making up songs on my electric guitar and spending time with my family and friends. Getting to meet Jerome Kaino at the regatta has been one of the greatest highlights of my life, because as a little boy I have been brought up watching the game of Rugby, and I actually look up to Jerome because he is very talented. Getting to spend the day with him on the boat was a great privilege and I felt on top of the world spending it with one of the famous Players. He was also very friendly and I felt like I had known him from ages because he was easy to talk to. ‘T ha nk You’ ca rd s fo r do no rs ! draw a picture Family Place were asked to Kids who visit the Auckland ate cool don o cards for people wh on specially-printed Thank You the first of Two . cial ething extra spe things to us or have done som – Elisiva (8) ily fam o gan hin from the Mafua cards to be decorated were ul! thank yous. Aren’t they beautif and Moana (5) gave personal Child Cancer Foundation • Sharing 13 * KIDS’ PAG ES * K I D S ’ PAG E S * K I D S ’ PAG E S * K IDS’ PAGE S * K IDS’ PAGE S * K IDS’ PAGE S * KID S ’ PAGES One Day Ph oto Competition The Foundati on held an ex citing photo One Day for competition Child Cancer for children, appeal. as part of July Thank you to ’s everyone who sent in photos for the One D Here are the gorgeous entr ay Photo Com ies received. petition. a gorgeous ne The winner, Br w Nokia Cool ia nn a Huynen rece Pix s30, than contacts at M ks to Amanda ived acalister Impo Billing’s wonde rters and Distr rful ibutors. n AGE : 3 na Huyne n a ri B : E ellington. NAM by, near W to be : it h W : M FRO would like What you Fairy Princess ouse Minnie M taken at 5 NAME: Rachana Reid AGE: re, Auckland Sho th Nor : M years (2010) FRO be : An Actress What you would like to o NAME: Ariana Houlihan-Pohi r Gisborne nea , ond Orm : M AGE: 8 FRO be : What you would like to I grow en wh r I want to be a Horse ride al. anim ite our fav up because it’s my 14 Sharing • Child Cancer Foundation rie AGE : 8 NAME: Peter Pi ckland Au i, FROM : Ranu like would What you Star to be : A Rock NAME: Ella Bartley AGE : 4 FROM : Mangere Bridge be : What you would like to k loo to s get also o wh A doctor, after mermaids * H EALTH PRO F ES S I O N A L S REPORT * H E A LT H PRO F E SSIO NA LS RE PO RT * HE A LTH PRO F E SSION ALS R EP OR T SIOP 2011 - Reviewing from a nursing perspective After three years in the planning, Auckland hosted a successful 43rd congress of SIOP (International Society Paediatric Oncology), 26-30 October 2011. In October 2011 Auckland hosted the International Society of Paediatric Oncology (SIOP) Conference, bringing together the world’s largest gathering of Health Professionals involved in the care of children and adolescents with cancer. Starship Paediatric Oncology Service Charge Nurse Natalie James has kindly agreed to share some of the knowledge gained. The SIOP Nursing Program The Auckland team was delighted that Auckland’s bid to host this conference was successful, as it provided New Zealand Health Professionals with the opportunity to engage with world experts. In particular, Dr Faith Gibson and her team from the UK presented ongoing research, focusing on the question of where adolescents and young adults are best cared for and emerging models of care for them. An exciting aspect of the programme, we believe, was the symposia on fertility in cancer care which was led by New Zealand staff. New Zealand and Auckland in particular have worked hard to promote care for young people with fertility issues related to cancer and its treatment. It was very pleasing for our nurses and surgeons to lead an expert panel and promote discussion on this topic. For nurses SIOP provided a great opportunity to focus on education and the development of clinical practice. The Child Cancer Foundation (CCF), provided some amazing support through their Health Professional budget to ensure that as many nurses as possible could attend the conference and education days. The SIOP Nursing Program was held over a three day period from the 28th to the 30th of October. The conference themes, around care of children in developing countries and care of the adolescents, provided a framework for the Nursing Program and we were very pleased to have attendance from nurse experts in these fields. Meeting the Needs of Local Nurses To address the needs of New Zealand nurses, we developed two additional nursing education programs to run alongside the main conference. The days were offered free to nurses who were registered for SIOP and to nurses from the Pacific Islands. 1. Pacific Island and Regional Nurse Update - 2 Days The focus of this program was to promote nurses’ understanding of cancer and to support practice development. This course was aimed at the needs of nurses who were new to practice or for whom cancer care was just a part of their practice, so was ideally suited to nurses in smaller shared care centres. Nurses from the Pacific Islands who are an important part of the New Zealand outreach program were included in this stream. 2. Advanced Nursing Program – 1 Day A number of nurses who work with children with cancer stay in their roles for many years and are considered to be advanced practitioners. This group’s learning needs are often overlooked as there is not always access to programmes and faculty with specialty knowledge. SIOP brought together a number of international nursing experts so we were able to develop a programme specifically focused on advanced nursing skills and models of care; a mix of formal sessions and clinical skills workshops were presented. Starship nurses: Nicola Ellis, Jane Cahill, Gemma Aburn, Wendy Wigg. Child Cancer Foundation • Sharing 15 * H EALTH PRO F ES S I O N A L S REPORT * H E A LT H PRO F E SSIO NA LS RE PO RT * HE A LTH PRO F E SSION ALS R EP OR T SIOP Pacific: Health professionals from New Zealand, Samoa, Fiji and Tonga. Highlights from the Nursing Program There were a number of highlights for nurses within the program. Here are a few that identify emerging trends in New Zealand: Transplant Nursing Two nurses from North America, had extensive clinical experience focused on issues relating to Bone Marrow Transplants. Rita Secola provided an excellent overview of targeted therapies. Of interest to New Zealand nurses she discussed the emerging role drugs play in the management of graft versus host disease. Ellen Olsen focused on issues relating to Bone Marrow Transplant for non -malignant disorders. Transplant is now indicated for many new conditions in paediatrics and the care and management of these patients is often complex and challenging for Oncology Nurses. It was great to hear from nurses with so much experience and also to consider how these new treatments will impact on patient care and service delivery over the next few years. Fertility Issues An important aspect of the nursing program was the symposia on fertility, which provided an opportunity to focus on future potential technologies and initiatives. Claus Anderson presented results from his team’s experience in ovarian tissue storage and transposition. While this is still considered an emerging treatment, there was compelling evidence to suggest successfully reimplanting ovarian tissue can support fertility and normal endocrine function. There was also discussion about AMH (Anti-Mullerian Hormone) testing as a predicator of ovarian reserve. For young women who have had cancer treatment, 16 Sharing • Child Cancer Foundation this may be a useful tool to predict when they are likely to lose their fertility. Using this information a fertility expert can work with young women, advising them to plan to have children in their fertile years or to access options for future fertility. Within the fertility symposia we also heard from young people themselves about fertility issues. As they recalled their experiences, it seemed that while not all of them thought that fertility was important at diagnosis, when treatment was finished it became an increasingly important issue to the young person. Many commented on how important the support and advocacy of family was at diagnosis, when they were first confronted with information about fertility. Clinical Practice Liz Dartch from Perth provided some interesting data comparing the risks and benefits of changing from administering Vincristine as an IV push, to administering it as an IV infusion. This data was very relevant and topical, as some New Zealand centres are currently considering this change in clinical practice. Showcasing New Zealand As hosts, we had the opportunity to really promote the great work that New Zealand does in the care of children with cancer. One aspect of this was to support nurses from the Pacific Islands to attend the conference and education days. Their attendance helped to establish the links that we need to continue to support the nurses in the Pacific Island twinning project. Amanda Cleland developed an excellent program that provided formal and clinical teaching based initially at Starship and throughout the conference. A number of New Zealand nurses also presented papers on a variety of topics. The most compelling of these was from Chrissy Bond who opened the nursing program by describing the effects the Christchurch Earthquake had on care delivery. She detailed how the team at CHOC managed in the early days to deliver care not just to the children in hospital but to those within the city limits where homes and streets were so severely damaged. For the international community, this was a reminder that disasters can happen anywhere at any time but that great teams like CHOC, can continue to provide care throughout and that rebuilding is always possible. Nurses at the Starship Blood and Cancer Centre were proud to act as hosts for the conference and an important part of this was providing tours of Starship and in particular the 7th floor. These tours were so popular that many people were turned away, as numbers had to be limited to 65. The feedback was excellent and some of the delegates noted that it was the highlight of their conference. While many wanted to see the amenities offered at Starship, there was also an opportunity to discuss our approach to care and this was very well received, with some great feedback from delegates. For many New Zealand nurses, SIOP provided a unique opportunity to attend an international conference focused on child cancer. Thanks to the support of the Child Cancer Foundation, as many nurses as possible were able to take this opportunity. In total approximately 45 nurses from all shared care and tertiary centres attended all or some of the program. Well done CCF! * ARTIC L E * A RTI C L E * A R T I CL E * A R T I CL E * A RTICLE * A RTICLE * A RTICLE * A RTICLE * AR TIC LE LEAP FINDINGS - Child Cancer survivors are doing well. The LEAP (Late Effects Assessment Programme) Adolescent Cancer Survivor Impact Study (ACSIS) was completed in 2011 and the LEAP team is keen to share the findings. LEAP was established in New Zealand in 2006 with three regional centres in Auckland, Wellington and Christchurch. The Late Effects team provides long term follow up for survivors of childhood cancer. This includes health checks, access to appropriate resources, education and psychosocial assessment and support. The ACSIS study’s purpose was to find out how young cancer survivors feel about life after cancer, including school, work, happiness and friends, as compared with their peers who hadn’t had cancer. This was so that the LEAP team can better understand the problems young survivors face and how to provide appropriate support for them. The study was the first New Zealand study to examine the psychosocial wellbeing of childhood cancer survivors. The following is a summary of the main findings. A Study of the Wellbeing of Adolescent Cancer Survivors in NZ Who took part in ACSIS? Male 57% Female 43% Eighty percent of children diagnosed with cancer now survive. Many return to good health and psychosocial wellbeing, while others have an increased risk of health, emotional or social problems due to their disease and/or treatment. The Adolescent Cancer Survivor Impact Study (ACSIS) is the first New Zealand study to examine the psychosocial wellbeing of childhood cancer survivors (CCS).This was a case-controlled study in which 170 CCS aged 12 to 18 completed a multimedia computer-based survey, which included questions about family and school life, physical and mental health, and risk taking behaviours. The CCS survey was a modified version of the Youth 2007 (Y’07) survey completed by 9100 college students throughout New Zealand. By comparing CCS responses to responses from the Y’07 students, the aim was to understand if the wellbeing of CCS was different to that of young people who have not had cancer. General Health While most CCS reported their general health as being good to excellent, it is worth noting that: Comparison of CCS and Y’07 reporting of chronic health problems or disability 40 • 35% CCS reported having a long term health condition compared with 17% of Y’07 participants 30 • One third of CCS reported that their long term health condition is caused by their cancer. 10 • 24% CCS had experienced a disability lasting six months or more, compared with 5% Y’07 participants. CCS Y’07 20 0 Long term health problem lasting 6 mths or more Long term disability lasting 6 mths or more Those most affected were CCS who had a cancer of the CNS. They reported problems with everyday activities such as communicating, mixing with others, and socialising. Ethnicity: Euro Maori Pacific Asian 72% 12% 8% 8% Age: Median 15.4 years Cancer diagnosis groups: Leukaemia/Lymphoma 49% CNS 13% All other 38% KEY FINDINGS: • In many findings CCS are doing as well as, and in some cases better than, Y’07 participants. • Most CCS report being happy, well adjusted young people who feel close to their family and friends. • CCS were more protective of their health, reporting less use of cigarettes, alcohol, and illegal drugs than Y’07 students. • CCS who had a cancer of the central nervous system (CNS) reported more difficulties with every day activities, including learning. Child Cancer Foundation • Sharing 17 * ARTIC L E * A RTI C L E * A R T I CL E * A R T I CL E A RTICLE * * A RTICLE * A RTICLE A RTICLE * * A Study of the Wellbeing of Adolescent Cancer Survivors in NZ continued... MENTAL & EMOTIONAL Health Mostly CCS regard themselves as well adjusted young people who are happy with their lives. • CCS reported greater emotional wellbeing (p=0.0003; WHO-5 scale). • No significant difference between CCS and Y’07 participants in reporting depressive symptoms. • For CCS, older age was associated with poorer wellbeing (p=0.003) as was older age at time of diagnosis (p=0.007). World Health Organization WHO-5 scale of wellbeing 40 CCS Y’07 30 20 10 0 Excellent Very Good Good Poor FAMILY, FRIENDS & COMMUNITY With regard to how well they get on with their family, closeness to their parent/s, and how much time their parents are loving and warm towards them, there was no difference between CCS and the Y’07 participants. Similarly,Y’07 participants and CCS both reported having good friendships; friends to hang-out, talk, and have fun with, as well as good friends who look out for and help each other. When discussing bullying and how often it occurred, there was no significant difference between CCS and Y’07 participants. There was also no significant difference when it came to the importance CCS placed on spiritual beliefs or religious faith. SCHOOL The majority of CCS who took part in this study (88%) were still at school. Of those who had left school, half were working and half were completing further study or training. School missed When it came to missing school due to their cancer and its treatment, the most common length of time was less than six months. Less than six months 45 Less than one year 27 One to two years 20 More than two years 8 30% CCS received at least one specific learning intervention such as teacher aide, additional time for exams, and/or reading recovery. When looking at which CCS received these interventions, it was: • 71% CCS with CNS cancers. • 23% CCS with leukaemia or lymphoma. • 28% CCS with other cancers. Percentge The findings suggest that for those who had a CNS cancer and/or treatment, it is likely to have impacted upon their learning ability. RISK & SAFETY BEHAVIOUR When it came to risk taking and safety CCS demonstrated more protective health behaviours than their Y’07 peers. Which of the following are okay for people your age to use regularly? 40 • 85% CCS would wear a seatbelt compared with • 16% CCS had smoked marijuana compared with • 74% Y’07 participants (p<0.001) • 27% Y’07 participants (p<0.002) • 16% CCS had smoked a cigarette compared with • 23% CCS were sexually active compared with 20 • 32% Y’07 participants (p<0.0001) • 36% Y’07 participants (p=0.0005) • 53% CCS had drunk alcohol compared with • CCS also had different ideas compared to their Y’07 peers about what is ok for young people to use (see graph) 10 • 72% Y’07 participants (p=0.0001) CCS Y’07 30 0 Cigarettes Alcohol Marijuana Other Drugs Acknowledgements Thank you to the childhood cancer survivors who completed our survey. You are amazing young people who constantly inspire us with your courage and resilience. To the Rotary Club of Newmarket Inc and CanTeen, a sincere thank you for funding this study. Our thanks also to Dr Simon Denny and the research team at the University of Auckland for the use of the Youth2000 and Youth’07 survey data. www.youth2000.ac.nz. We acknowledge and thank the national Late Effects Assessment Programme (LEAP) team for all they have contributed to the study. If you would like more information about the ACSIS, please contact: • Kathy Yallop, Principal Investigator, on [email protected] • Heather McDowell on [email protected] • Auckland LEAP Long Term Follow-up Programme • Starship Blood and Cancer Centre, Private Bag 92024, Auckland 1124, New Zealand. 18 Sharing • Child Cancer Foundation AR TIC LE * R EGIONA L NE W S * RE G I O N A L N E W S * R E G I O N A L NE WS * RE GIO NA L NE WS * RE GIO NA L NE WS * REG ION AL N EWS Regional News AUCKLAND & NORTHERN REGION Northland On Saturday June 9th we held a Pampering Day for Bereaved Mothers at the Copthorne Hotel in Waitangi, Bay of Islands. A huge thank you to Millennium Hotels and Resorts for their generosity. What a lovely day it turned out to be! Nine bereaved mothers came together to enjoy one another’s company in this resplendent setting. Our honoured guests could enjoy the outdoor spa pool, take a walk on the beach adjacent - or just ‘hang out’ in the comfortable room provided, and drink tea and chat. Each attendee was able to choose from either a massage or a facial – 25 minutes of pure bliss. We came together for a shared lunch and conversation, before bidding one another farewell and heading off home in all different directions. It was a diverse group of women from all different walks of life, united - as one mother put it - by the fact that they were all members of a club that they had not chosen to join. It was a special day. Auckland Lady Blundell’s 90th Celebration It has been a busy few months in Auckland Branch. Winter may be with us but we have had lots to do. In Auckland, Board and staff members, children and families enjoyed celebrating our Patron Lady Blundell’s 90th birthday with afternoon tea in the Family Place. CEO Sarah Thomson thanked Lady Blundell for her continuity as Patron since the inception of the organisation; for her support and wisdom and for her inspirational leadership of CCF. Mother’s Day was a good old scream (louder for some than others), 40 mothers bravely went climbing on the high ropes circuit at Butterfly Creek and then did the flying fox. A few not so brave (myself included) played mini golf, this was rounded off by a delicious lunch of hot ham and salads. All mums agreed it was a fantastic day if very strenuous. The fathers went fishing and I’m told what happens on the water stays on the water so I’m guessing they had a great time. We also had an information day at the Parent Centre where we had four guest speakers talking on a variety of subjects. The annual zoo trip was on the 5th August and was well attended as always this is one family event that everyone enjoys. Just a quick note at the bottom, the committee is made up of people just like you, we organise all the social events. If you think you might like to help out we meet on the first Monday of the month in at the Family Place in Grafton Road. Feel free to give me a call: Christine Steel - Auckland Branch Chair (09) 3039887. ABOVE LEFT: Child Cancer Foundation CEO Sarah Thomson speaks at the afternoon tea. LEFT: Lady Blundell chatting with Eilish Wilkes. New Toys for Radiotherapy Auckland Family Support donated toys and resources to Radiotherapy at Auckland Hospital to provide more recreational activities for children undergoing radiotherapy. Children in Auckland use the same radiotherapy facilities as adults. The donation was happily received and now each child coming for radiotherapy can access a range of toys and activities to keep them occupied. LEFT: Ingrid Johnston-Maurenbrecher from Auckland Hospital’s Radiotherapy Ward with Auckland Family Support Manager Laverne Robinson. Knit-a -thon Knitters from Auckland’s North Shore hunkered down for a 48 hour Knit-a-thon in June, organised by the directors of the Crafty Knitwits store Linda Goer and Kerry Bowles. The event involved 200 knitters and over $10,000 was raised, with the final total still to be confirmed. The colourful squares knitted were sewn into blankets for auction. The ladies involved not only knitted or crocheted the squares but also raised sponsorships. The community effort from the local Milford businesses supporting the effort with bucket collection and refreshments for the 48 hour vigil, and donating items for the auction was also very much appreciated. Kristin Fashion Show The final Kristin Fashion show raised $11,000 for the Child Cancer Foundation. The show featured a number of wellestablished fashion houses such as Adrienne Winkelmann, Trelise Cooper, Sera Lilly and Topshop as well as promising new designers and a Kristin young designer. It also showcased the unique artistic and creative talent of Kristin’s students. The production was a year in the making. The show has raised $302,000 in the 13 years it has been running – impressive. Thanks guys! Child Cancer Foundation • Sharing 19 * R EGIONA L NE W S * RE G I O N A L N E W S * R E G I O N A L NE WS * RE GIO NA L NE WS * RE GIO NA L NE WS * REG ION AL N EWS Regional News continued... MID NORTHERN REGION Eastern Bay of Plenty We had a busy period last term with two major fundraisers. The Rotary Club held a Charity Golf Tournament for us and we were the beneficiaries of the Hammerton’s Charity Fishing Tournament. This has made our bank balance extremely happy and we are so grateful to the people behind the organisation and the community for their generosity. A local business also allowed us to purchase firewood for our families at cost which we are also very grateful for. Saturday the 31st May was a relaxing day for our mums and daughters as they spent a day at The House Of Many Faces having massages, saunas, spas, and facials and manicures. Morning tea and lunch was delivered by The Red Barn and everyone had a great time. Sunday the 1st of April was time for the dads and sons to have their day. This was a morning out fishing with Phantom Charters. Kayaks were also taken just in case anyone felt like a paddle. Everyone had a great time and all went home with fish for tea. Tauranga Beach Bald funrazor The Beach Bald funrazor at Mt Maunganui made history for the Child Cancer Foundation, with Ports of Tauranga CEO Mark Cairns bringing in the highest amount ever raised by an individual for the Foundation – an incredible $57,189! Susan Devoy also raised over $11,000 and together the 48 shavees raised just over $96,000, with the event netting over $101,000. The shavees included Moss Carlin, Dad of CCF’s Victoria Carlin and Destiny-Faith Coade who is just seven years old! RIGHT: Delwynne Hahunga and Susan Devoy on stage. FAR RIGHT TOP: Mark Cairns. FAR RIGHT BOTTOM: Susan Devoy. A Most Unusual Auction! A life boat from the wrecked ship Rena auctioned on TradeMe raised $20,800 for Child Cancer Foundation projects in Tauranga. Port of Tauranga worker Moss Carlin, who organised the fundraising auction, says he is delighted with the money raised and described it as a “great project to be involved with”. Moss is a member of the CCF Tauranga Branch Committee. The boat was one of the life boats on board the 236m container ship Rena when it grounded on the Astrolabe Reef on October 5, 2011 spilling hundreds of tonnes of oil into Bay of Plenty waters. 20 Sharing • Child Cancer Foundation Palm Beach Plaza director Greg Clarke bought the lifeboat to use as a tribute to all the volunteer work put in by locals to save the beaches and protect the environment. The Lifeboat was unveiled at its new home at the Papamoa Palm Beach Plaza as part of the One Day for Child Cancer promotion on the last weekend of July. Child Cancer Foundation would like to acknowledge the generosity of the following: The salvage operators from Svitzers & Smit based in Mt Maunganui, New Zealand Marshalling and Stevedoring limited Mt Maunganui, Tauranga Bridge Marina, Bay Insurance Brokers, Mount Auto Electrical. ABOVE: CCF Dad Moss Carlin & Fundraiser Delwynne Hahunga receiving a cheque from Greg Clarke of Papamoa Palm Beach Plaza from the sale of the RENA Lifeboat. * R EGIONA L NE W S * RE G I O N A L N E W S * R E G I O N A L NE WS * RE GIO NA L NE WS * RE GIO NA L NE WS * REG ION AL N EWS Tairawhiti / Gisborne Branch The Emergency services of Gisborne including St John’s Ambulance, the NZ Fire Service, Coastguard and Police combine forces each year to organise and run Young Nick’s Fishing contest in aid of Gisborne Branch. This is the single biggest fundraiser of the year (by far) and is so very appreciated by the Branch and Gisborne families. We hope to contribute half of the money raised toward a much-needed redecoration of the treatment room at Planet Sunshine (that’s the children’s ward at Gisborne Hospital). The aim is to make the treatment room more child-friendly, safer and less stressful for children who receive treatment there. The rest of the money will go directly towards supporting our local children and families on the childhood cancer journey. In support of National Appeal, one of Gisborne’s rural schools, Ormond School, held a “wacky hair day”. Children who took part donated a gold coin to the Child Cancer Foundation, and in addition the proceeds from a hotdog lunch were donated. A big thanks to Ormond School and community. We also held another holiday art day, with children making framed artwork on the theme “something special to me”. Sometimes we create artwork to give away as thank yous to donors, but this time they were keepsakes that each person took home to put on their wall. CENTRAL REGION Counsel in Concert For the last three years, something extraordinary has been happening within the legal profession in Wellington. More specifically, once a year a group of very talented individuals from across the legal fraternity get together for a fundraising concert that is simply stunning. The event is known as Counsel in Concert, and it was the brainchild of the Crown Law music group, and the event was driven by Merran Cooke, Assistant Crown Counsel. The first concert was in November 2009 and was a masterpiece of music over a lunchtime performance that saw a packed house at the unique venue of St Andrew’s on the Terrace. From the very first note of the “Arrival of the Queen of Sheba” the audience were captured by the talent of this group of musicians from across Crown Law, and the wider Wellington legal profession. Since then, there have been two more concerts, and each one has built upon the last. The concert in 2010 included the soprano soloist Deborah Wai Kapohe, and she attended again last year, much to the delight of the audience. The concert had become such a success in 2010 that there had to be two performances last year, and both were to a packed house. The uniqueness of the event is not just the setting at St. Andrew’s, nor indeed the fact that there are so many talented musicians from across the legal profession, but that everyone who performs does so as a volunteer to raise money for our Foundation. The entire choir and orchestra give up their time for many months before the event to practice over lunchtimes. The orchestra includes some members from the New Zealand Symphony Orchestra and the Vector Wellington Orchestra, and the conductor is Owen Clarke from the Central Band of the Royal New Zealand Air Force. The concert is well attended by many members of the judiciary, including the Chief Justice and the Solicitor General. However, entrance is by gold coin donation and so a great many people from all across the city of Wellington know that it is something special and ensure that they attend. I’ve been fortunate to attend all three concerts, and it really is a highlight of my year. We have been very fortunate to be the recipients of the donations for the last three years, and are very grateful to this very talented group for all they have done for us. - John Robson TOP: The choir and orchestra made an impressive sight. ABOVE: Organiser Merran Cooke thanking participants.Photos: Tim Kelly Photography Child Cancer Foundation • Sharing 21 * R EGIONA L NE W S * RE G I O N A L N E W S * R E G I O N A L NE WS * RE GIO NA L NE WS * RE GIO NA L NE WS * REG ION AL N EWS Regional News continued... CANTERBURY REGION South Canterbury Branch The South Canterbury branch has been involved in a few activities over the past months, including a very successful funrazor event which raised approximately $10,000. Well done to all, and especially to those participants whose heads and faces went under the scissors or razors on a not too warm evening. We are gearing up for another funrazor in October. We were pleased that two of our siblings were able to attend the siblings camp at Living Springs in November 2011. The camp had been cancelled earlier in the year due to the earthquake and the children involved thought that they would miss out. However, due to some very good management and organisation, they had a marvellous time. Thank you to the organisers and helpers. Our National Appeal Day in South Canterbury raised $5,500 - up on last year - so an excellent result in what are hard times for people. Christchurch Lachie Sutherland and other children had a wonderful Sunday night of pizza and ice cream with Crusaders Kieran Read and Corey Flynn, in Christchurch Hospital recently. The ice cream was donated by Deep South who will be donating four tubs every month in the future. The sprinkles came from Variety Products. INTERNATIONAL Tonga Update Their main activities are: Dr Jane Skeen, Paediatric Oncologist Starship Blood and Cancer Centre and Janet Mikkelsen, Starship Paediatric Palliative Care Nurse Specialist and Paediatric Oncology Nurse, visited Tonga from 29 May to 1 June, funded by the NZAid Medical Treatment Scheme visiting Medical Specialists. - Capacity building of the CCF-T through establishing an office with necessary equipment, and building a network with other organisations. They were invited to present at a lunch hosted by the Child Cancer FoundationTonga (CCF-T). Child Cancer FoundationTonga was officially inaugurated in March 2008 with support and guidance from Child Cancer Foundation NZ. CCF-T’s Patron is Crown Princess Nanasipau’u Tuku’aho. CCF-T has been very successful in fundraising and has recently purchased a three bedroom house “Petani House” situated at Fanga - a short distance from Vaiola Hospital, Nukualofa, Tonga, which will function as an office and a drop-in /resource centre for families. 22 Sharing • Child Cancer Foundation - Ensuring financial sustainability through annual fundraising. - Providing support for families of children with cancer through monthly support for telephone, transport, and grocery bills. - Promoting the understanding of the nature of childhood cancer and to be an advocate for children with cancer and their families through public awareness programmes such as TV programmes, and publicity of International Child Cancer Day, Tonga Cancer Day, and Memorial Day. - Planning a long term plan for financial and medical support for children with cancer. BELOW: Janet Mikkelsen and Dr Jane Skeen with some of the members CCF-T, outside ‘Petani House’. * FOU NDATI O N PA RTN E R * F O UN DAT I O N PA RTNE R * F O UNDATIO N PA RTNE R * F O UNDATION PAR TN ER Bartercard Foundation The Child Cancer Foundation has completed a successful first year partnership with the Bartercard Foundation. We were very fortunate to be selected by the Bartercard Foundation as their chosen charity for 2011 – 2013, and have benefited hugely in our first year through $55,000 Trade Dollars raised. We have been able to offset family event costs, awareness and fundraising campaign costs, take part in Bartercard trade shows and tap into a vast new business network. Bartercard Trade Dollars have been used to offset costs in a variety of fundraising campaigns including the Child Cancer Foundation National Appeal, where marketing and publicity materials, videoing, banners and photography for feature events were purchased using Trade Dollars. Branch family events have also been supported through Bartercard. Bouncy castles and other entertainment were bought for the Auckland Christmas Party, a sound system was hired for Memorial Day and equipment has been hired to assist volunteers. The Bartercard Foundation has held their own successful fundraising events and promotions for the Child Cancer Foundation, including Gold and Platinum Luncheons. The Child Cancer Foundation is looking forward to further benefits over the coming year of the two-year relationship. We are very grateful to the Bartercard Foundation and Bartercard Members for their generous support of children with cancer – it has made a huge difference to what we can do. Bartercard is the world’s largest trade exchange. It facilitates barter exchange between member organisations, freeing cash flow and guaranteeing new business. Members earn Bartercard Trade Dollars for the goods and services they sell and this value is recorded electronically in the member’s account database. TOP RIGHT: CCF has had the opportunity to take part in Bartercard tradeshows. Pictured from left are Jade Taylor, Sophie Armitage and Megan Horsburgh. RIGHT: Trade Dollars supported the Steve Price Night of Courage. BOTTOM RIGHT: A Bartercard member helped us film Jerome Kaino shaving his lid for a brave kid! BELOW: Bouncy castles were hired with bartercard dollars at the Auckland Christmas Party. Child Cancer Foundation • Sharing 23 Huge thanks to all our fantastic sponsors, we couldn’t do it without you! GOLD STAR SPONSORS: MAJOR FUNDING PARTNER: FOUNDATION PARTNER: SPONSOR AND SUPPORT PARTNERS: FUNDING PARTNERS: Guardian Trust | Pelorus Trust | Southern Trust | Lion Foundation | Four Winds Foundation | Infinity Foundation | Robinson Trust - Diana and Andrew Robinson | New Zealand Lottery Grants Board | BA Lewis Charitable Trust | Youthtown Trust | Ernest Hyam Davis Trust | Kathleen Dorothy Kirkby Charitable Trust | Joyce Fisher Charitable Trust | Thomas George Macarthy Trust | NZ Community Trust | The Elaine Gurr Endowment Trust | Mt Wellington Foundation | The Trusts Community Foundation | The Mainland Foundation | NR Thomson | Eastern & Central Community Trust | Trust House Foundation | Community Trust of Mid & South Canterbury | Sir John Logan Campbell Residuary Estate | Constellation Communities Trust | Endeavour Community Foundation | Pub Charity | North and South Trust Limited | Alexander Harold Watson Charitable Trust | VMD Collier Charitable Trust | Jack and Marjorie Ferrier Charitable Trust | Charles Rupert Stead Charitable Trust. Every child and their family walking the child cancer journey will never feel alone. National Office PHONE 0800 4 CHILD FACEBOOK Visit Child Cancer 76 Grafton Road Grafton, Auckland 1010 PHONE (09) 366-1270 (0800 4 24453) EMAIL [email protected] WEB www.childcancer.org.nz TWITTER Foundation page ChildCancerNZ