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Let’s help Lucy - Updates - Givealittle

  • Celebrate Lucy      15 March 2019

    A Celebration of our beautiful daughter

    Lucy Dawne Drake

    (LuLu)

    Omokoroa Community Church

    Monday 18th March at 11.00.

    As a family we wish to come together with all those who had Lucy touch their lives and celebrate the amazing gorgeous person she was.

    Lucy asked that we do not wear black as it is a celebration, and that if possible please bring a plate of yummy food to share and a small bunch of flowers from your garden in jar or tin.

    Nick and Meg

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  • Good Bye Lulu     14 March 2019
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    It is with a broken heart that I share the news that our beautiful, kind, thoughtful, life loving girl passed away early yesterday afternoon. She was at home, surrounded by her close family with her favourite Florence and the Machine playing in the background as she slipped off into a peaceful final sleep. Nick and I want to thank everyone in our wonderful Omokoroa Community and our wonderful friends around New Zealand for the amazing love and support given to us and our gorgeous girl. Meg x

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  • Yes! Lulu made it to Florence.     1 March 2019
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    The generosity and pleasure of getting out enjoying the amazing Te Puna Sheep Speed Shearing Competition a month ago was so heart-warming. Thank you to the committee and everyone who came along that evening. Over $4000 was raised and this Memory Making Money has gone on to help fund the big trip to Auckland to see Lucy's beloved Florence in concert. Lucy had been nauseous for the week prior and the sickness had taken her back to the hospital, so it was with great big smiles and relief that the journey could be made. The delight and amazement from seeing her idol live, left Lucy buzzing for days. The treat of an accessible waterfront hotel and a splurge on official Florence merchandising was truly epic. Getting ready for the concert was just as much fun, as two youthful and beautiful young ladies spent a luxurious 2 hours applying make-up and trying out lipstick. We swept into the concert in cool late style, shortly before Florence made it energetically to the stage and thrilled the crowd on the last night of her world tour.

    A special holiday was booked for the family to travel to Arrowtown in the South Island early February, however coping with the rapidly changing conditions of Lucy's physical abilities, meant that the Drakes decided to opt for mini holiday closer to home. Last week they got to Ohope Beach, setting up Lucy's hospital bed in the middle of the living room. From here she looked straight out onto the sea and sand and could hear mum's whooping in the waves, a really special time for the family to relax together.

    And now it is coming to the crunch time, last weekend there were more discussions around Lucy's funeral and the big party she would like to have. Rick has been asked if he will make her coffin, she wants it to be covered in artwork which her talented sister Ella and friend Samara are getting involved in. She would love lots of flowers and everyone to bring food to share. Most of all Lucy would like a big party, in the heart of the community which has done so much for the family.

    In the last few days Lucy has started to lose the use of her hands, understandably this would be the point of real frustration for Lulu, but when I popped in to see her last night the first thing she thought of was to check if I was ok and had I had chicken pox, as she has contracted shingles and doesn't want anyone else to catch it. I love Lucy and her continued cheekiness that had me laughing and giggling with much mirth while sitting at her bedside. I'm very lucky to know this beautiful person, who has many thoughts and ideas to improve her world and that of others. That's the hard bit right there, I adore talking to young people and hearing what they think. Soaking up the fresh, untarnished view of what wonders our world can be…

    This week Meg has had to stop work, as Lucy is starting to need around the clock care. The support of her employees at The Garden early childhood centre has been beyond what Meg and the family could have asked for. Nick is still self-employed as a tiler, so will be taking days off to give Meg some respite. Lucy now needs help with brushing teeth, taking medication and feeding. While the cancer in her spine is affecting her physically, the cancer in her brain is affecting her short term memory and Lucy has come up with some gems. Especially amusing can be when her "inside voice" talks and it has her parents smiling and shaking their heads.

    With an inability for Lucy to support her upper body, transferring into a car is now not an option so a Mobility Taxi is the only way to get Lulu's much-desired freedom from the house. Although as Nick found out yesterday the $190 return cost to town curtailed his idea for a spare of the moment plan to visit The Mount and a trip out will have to wait for another day.

    Rick and I are still looking at ways to help this battling team out and we are running Cyberlink's Omokoroa Community Garage Sale and Car Boot at Freshchoice on Saturday 30 March. It's planned there will be a carwash and I think Benny, Lucy's brother, is going to make some of his delicious cinnamon rolls to add to a cake stall.

    There is so much that people have done for the family – THANK YOU, THANK YOU, THANK YOU to all that have and continued to make meals for the Drakes, to those that have helped to raise funds and been there with cheerful encouragement, it has and continues to make the world of difference.

    If you are able to spread the news of this give a little page, to lighten the financial burden in a time of reduced income, it is truly appreciated. As the family enjoys the time they have left with their lovely daughter & sister.

    Aroha nui

    Veronica & Rick Peers.

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  • Home Again!     11 January 2019
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    Hello Everyone, It's been about a month since we last updated and we thought we should keep everyone abreast of how things have been going!

    Lucy has had a fairly stable period the last couple of months since she got home from getting her shunt and having radiotherapy. She started her next round of Chemotherapy without too many side affects and she is due to start another round today.

    Lucy had a fabulous 16th Birthday where she went out to dinner in town with a lovely bunch of friends, then they all came back to our house and stayed the night while Nick, Benny and Ella escaped the house for the night.Leaving Meg to chaperone a bunch of giggly teenagers!

    Christmas was fantastic at the wonderful Peers house where we had a bunch of friends from Christchurch join us as well as Megs brother and family.

    Lucy was tired on Christmas day and by boxing day unfortunately started to go downhill quite rapidly.

    She was in a bit of pain and feeling very nauseous with her legs starting to not function properly.

    On the morning of the 27th a decision was made to transfer her to hospital by ambulance.

    Upon arrival and after being admitted through ED she was taken up the Pediatric Ward where the Doctors could resolve her symptoms over the next week.

    She spent New Years Eve in hospital where the lovely nurses wheeled her bed into one of the larger rooms with another patient and they had cheese and crackers whilst watching the New Year fireworks!

    She came home on the 3rd and is now at home in a hospital bed. Unfortunately she has lost the use of her legs and the ability to control her bowel and bladder. This means she is on a permanent catheter and is now back in a wheel chair.

    She is back to her amazing bubbly self , being cheeky and ordering everyone around! We even managed to take her out to the movies and a café.

    So we all hope that now she is over this latest hic-up, she has another period of stability and can go to her beloved Florence and the Machine Concert!

    Thank you all for your kind and caring thoughts,

    Love Nick ,Meg and family.

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  • Giving it another shot!     4 December 2018
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    Hi, thought it was time to give an update about our amazing Lucy and her continual determination to battle on.

    After the blow of the negative news we received from MRI and scans, we have taken time to regroup and enjoy family time as much as possible. Many of our lovely friends have sent links and information about different forms of treatments from the internet, which both Lucy and Nick have investigated with great interest. We have also been very lucky to have a fantastically supportive and open-minded Oncologist, who listened to the information Lucy gained and discussed fully and respectfully many different ideas. I must admit both he and I were blown away by her knowledge of the brain, how it works and her grasp of what is happening to her body. Again everything has been her decision and she has decided to fight for as much time as she can. So she started on a programme of Metabolic Treatment that uses a cocktail of repurposed drugs that have shown to have some impact on cancer cells, slowing their growth and enhancing the effect of chemo. Today, she has also started another round of chemo, luckily it is something we can do at home as long as we can support her with any probable side effects. Nick and I have also decided to cut our working hours back as much as possible to be there for not just Lucy but our family as a whole.

    Lucy continues to go from strength to strength with her walking, still using splints and crutches, but managing to get out and about within the real world again. Loving spending time within our beautiful community as much as possible with friends and family. Many of you that have seen her about will have noticed the new hair-do or lack of. This is something that we knew would happen eventually and she looks as gorgeous as always, plus she is having lots of fun watching peoples reactions.

    Again, I would like to send thanks from our family to everyone for the amazing support that we have received.

    Megx

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  • Results of the dreaded MRI     22 October 2018
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    Hi, Lucy is recovering well after her surgeries, is still a little light headed and sore but almost back to her old bubbly self. We have received the results from her full body MRI and it has shown that the primary tumour has gone and that the radiotherapy worked. However, there must have been cells remaining at the very edge of the treated area and these have now spread down into her lower spine and up into her upper neck. This is the worst possible news and she is now scheduled to start emergency Radiotherapy tomorrow on her lower spine, neck and brain. We have be told that this is to slow down the growth of the cancer and hopefully maintain Lucy's mobility and bodily functions for as long as possible. Unfortunately due to the rarity and rapid growth of Lucy's cancer chemo has not worked and is no longer an option. We knew this was a possible outcome eventually, but not this soon and everyone including the medical team are in shock.

    We have been given the use of a family apartment at Ronald McDonald House and intend to be altogether over the next few weeks to process this sad news before we bring her home. We are now determined to give her the best Birthday, Christmas and Summer we possibly can. Thank you, everyone, for your love and support on this heartbreaking journey.

    Meg x

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  • Back in Auckland sooner that expected.     19 October 2018

    Unfortunately after several days of Lucy suffering from a strong headache behind the eyes and forehead, plus the onset of vomiting we ended up in Tauranga Hosptial on Monday afternoon. Thinking that it was possibly a virus Lucy wanted to go home to sleep in her own bed, only to return on Tuesday afternoon with her headache and vomiting getting more intense. The team at Tauranga investigated with a scan to discover that Lucy had growing pressure on the brain from hydrocephalus. Within an hour from diagnosis, Lucy and I were on our way to Auckland by helicopter again and booked for surgery the following day after an MRI of the head.

    The pressure continued to build that night and our very brave girl was in extreme pain. By Wednesday morning the medical team decided not to have the MRI and just go straight to theatre to put in a shunt to drain the fluid. Unfortunately, shunts can be very temperamental and Lucy ended up again in theatre to repeat the surgery on Thursday afternoon. Which I am happy to report, worked and has given Lucy instant relief, plus a new haircut with an Avatar twist.

    Lucy had her dreaded full body MRI this morning to see how well the treatment has worked so far and we are now waiting for the results and plans to move forward. It is, however, a long weekend and we will have to wait until Tuesday.

    Meg x

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  • TIME WITH THE FAMILY     8 October 2018
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    Hi Everyone, Lucy's time at home is nearly over and it seemed to have flown by without us doing half of what we planned to do. Everyday life seems to get in the way. However, it has been wonderful to have everyone together in the one house just being normal. Lucy has had time to see her sibling's school and sports events, spent time with her friends and make some special memories with wider family.

    Unfortunately, we have had several trips to the hospital for extra support for Lucy's ongoing pain and side effects. We have been told that this will be ever-changing as we move along our journey.

    Our determined girl is walking short distances with her splints and crutches. This makes her very tried as it takes a lot of mental and physical strength to make her legs be obedient. She still has very little feeling in her legs and feet but is resolved that this will improve and is working hard at physio. She is also making sure that she will pass NCA level one this year with support from the wonderful tutors' at Northern Health School and has chosen her subjects for next year.

    As a family, we are still very overwhelmed by the support and love that we are given by our local community. Omokoroa Point School was a very special and safe place for our children after the Christchurch earthquakes and Lucy loved her time there. It was fantastic to see the beautiful colours worn by everyone on the last day of term and it give Lucy warm fuzzies to see the pictures of the whole school. A new Give A Little page has also been set up by a very generous friend who has donated the hire of an amazing launch in the Hauraki Gulf. We are really lucky to live in this small community.

    Nick, Lucy and I are heading back to Auckland next week for the dreaded MRI to see if Lucy's cancer has spread to other areas of her body. She is also starting another round of higher strength chemo that will hopefully maintain the shrinking effect of the Radiotherapy on the original tumour. Hopefully, if Lucy copes with the new chemo we will be able to spend most of our time at home with the support of Tauranga Hospital and the amazing Waipuna Hospice.

    Please send some positive vibe our way next week as I feel that the Drake Family are due some good luck.

    Meg

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  • Nearly There!     29 August 2018
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    Hi everyone, I thought it was well over time to share an update, as we have had lots of people wanting to know how Lulu is doing.

    We are now in our second to last week of treatment and Lulu has been incredibly brave and her normal bubbly self through most of it. There have been several hiccups along the way, which was to be expected, mainly dealing with pain and minor side effects. The medical team have been amazing to deal with, making sure she is as comfortable as possible and Lulu has coped with everything with her usual smile and laughter. She still has her hair and eyebrows! Which as you can imagine was a big issue for a teenage girl. She has also met some amazing teenagers and children over her time in Auckland, who are also dealing with cancer. Many are having incredibly intense treatment that makes them very ill but most will have positive outcomes. Lulu at time feels embarrassed because she doesn't look 'sick' like her new friends. But as her Mum, I feel blessed that she has the chance to still be herself for a little bit longer and not just 'the cancer patient'.

    The rest of our family are plodding through life one day at a time still very much in a daze, keeping everything as normal as possible. We are trying not to let Lulu's journey dominate our lives, but that can be very hard with so many reminders of how much life has changed and when others who care want to talk about it with us. Lulu will be coming home at the end of next week for a six-week break. We had the choice of continuing physical rehab in Auckland, but know that the time we have together as a family is very precious and have decided to make the most of it while we can.

    Thank you, everyone, for your ongoing love, support and for all the amazing meals that have kept us going. Megx

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  • The Journey Begins     25 July 2018
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    Hi lovely people! I have decided to reopen this Give a Little Page to continue support for Lucy and her family as they begin this next stage of their journey.

    Lucy has returned to Auckland and is currently housed at the fantastic Ronald McDonald House with Dad while they attend the daily Radiotherapy sessions and Lucy has started a 42 day round of oral Chemotherapy. Each day arrives with its own challenges, whether it be itchy skin, sleep deprivation or just trying to manage to get around in the wheelchair!

    On a positive note, Lucy is making great progress with her determination to get back on her feet and start walking. During her daily Physiotherapy sessions with the amazing Physio team at Starship Hospital, Lucy has managed to get about the therapy room for the first time on crutches. Although a short period and a little wobbly, it has boosted her confidence and shown that her hard work and exercises are paying off.

    Lucy continues to try to make each day as "normal" as possible. She is attending the Northern Health School at Starship Hospital to try and keep up with her school work (NCEA year! Assessment after Assessment! Yuk!). It gives her a chance to mix with other kids her age and going through their own challenges. Better than having to spend all the time with Mum or Dad!

    On the subject of Mum and Dad, they are taking turns, week on and week off each. Mum’s wonderful employers, The Garden Preschool in Omokoroa, have been fantastic and very supportive of her working schedule. Dad is trying to make his own work fit in with the time frames he has.

    Lucy has decided to go on a diet called the Keto Genic Diet to help her body cope and fight the cancer. This is something that she has discovered with her Mum and she has researched on her own. Dad is being supportive and helping by not eating too many carbs!!

    The family is extremely grateful and very humbled by the support and generosity received so far, especially the awesome community of Omokoroa. The thoughtful food supplies, house move and caring actions have meant so much.

    So, like all journeys, they start with one foot after the other and have their highs and lows. Please help Meg, Nick, Lucy and family as they continue on this path by helping ease the financial burdens such a journey can bring.

    Thank you kindly,

    Veronica

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  • A Little Normality     14 July 2018

    Three weeks on and Lucy is back home for a short time. This is actually a new to us home, as last weekend we had so many people help us to move Dawne and our home into this new one. It was amazing, we want to say a huge thank you to all those who gave and offered their time to help shift, move, clean, do lawns, building ramps, make soup, sandwiches, cakes and refreshments. We understand there were many more people that offered and we thank you for thinking of us at this time. It was the quickest house move ever- so thank you all.

    As we adapt and Lucy gets about with her wheel chair we are just looking to have as much normality as possible. Meg is starting back at work for week and I am taking time with the Ella, Benny and Lulu before heading back up to Auckland. Like any family that has just moved house we are trying to find where all the mugs have gone and deal with the frustrations of switching our internet across to the new address (hopefully in the next 10 days….) and a sickness bug has just hit the house. So far I, Dawne, Ella and Lucy have succumb to it so we just hope it doesn’t spread further.

    Monday we met with the oncologist and whilst having radiation on the full length of her spine, Lucy will also start taking an oral chemotherapy drug. After 6 weeks of radiation the course of chemotherapy will be stepped up 200%.

    So that is our current news but we just wanted to say thank you and much love to you all for your support, it really does make the world of difference.

    Love

    Nick, Meg and family

    Any messages for the family can be left on the give a little page or through Veronica (Ron)

    wellwishes4lucy@gmail.com

    texts to 021 578 840

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  • Dear Friends     3 July 2018

    the news we received on Monday has floored us all. Unfortunately Lucy has an extremely rare form of cancer in the spine and we are sad to say it is of the worse type - stage 4.

    Lucy is very much the same person - bright, bubbly, strong and healthy. Working hard at her daily physio sessions to get back on her feet and walking. We are hoping that she will be back home in Omokoroa next week before returning to Starship for six weeks of radiation therapy at the end of July.

    As you can well imagine there is so much happening and information to take on, we are finding it overwhelming. To this end it would really help us if you could send all well wishes, texts and any requests to visits through our friend Ron, her details are below.

    Thank you for all your incredible support so far and as we start on this long journey, your continued love, thoughts and prayers. Your amazing thank you.

    Nick, Meg and family

    Veronica (Ron)

    wellwishes4lucy@gmail.com

    texts to 021 578 840

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  • Blown Away     24 June 2018

    We are absolutely blown away, we never imagined so much love and support from our family and friends. Its overwhelming the response from the community and we would love to thank everyone of you for what you have done. This takes so much pressure off, it makes a world of difference.

    Lulu is very tired but OK, moving a bit, but still early days.

    We love you heaps.

    Nick, Meg and Family

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