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Eleanor's Fight

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25.01.2022 Hello everyone Thank you for your ongoing love and support for our family. We are touched by your messages and genorosity. We arrived safely to Melbourne yesterday. We are all well. Eleanor and George were extremely well behaved on the plane and we all got some form of sleep. It is great to see the Australian sunshine again even though we are confined to our apartment.... We are required to self-isolate for 14 days. This is incredibly difficult for us because we need to get Eleanor's treatment at The Royal Children's Hospital resumed as soon as possible. We are also busily organising essential supplies to be delivered to our apartment. We hope everyone is keeping safe and well amid the outbreak of Coronavirus. Lots of love from Eleanor, George, Rob and Jacqui xxx #eleanorsfight

25.01.2022 Hello to all of Eleanor's supporters, The last two weeks Eleanor has had her cancer diagnosis scans and tests. She received bone marrow aspirates, PET scan, kidney function, MRI's of brain, spine and abdomen, X-ray, CT and finally a sample of her cerebrospinal fluid of her brain and spine. A huge couple of weeks for her. We met with our oncologist after the scans and he said that the results needed reviewing by expert teams to rule out any new disease recurrence, after a coup...le of questionable spots were discovered. We then started an agonising wait, analysing what would or wouldn't be. Always hoping that Eleanor would be moving in the right direction and become cancer free. We know in our heart of hearts what new spots would mean, a devastating blow. We are so pleased to report that after a long two weeks of waiting, Eleanor is clear of disease!! After receiving this fantastic news, we also got the all clear from our doctor to return home to Hobart. The reality hasn't set in for us yet as we are busy packing up our things ready to head home. Wherever we have been located, whether that be Melbourne or Columbus, we always called it home to give Eleanor and George as much stability as possible. But to be able to head back to our home, Hobart, is such a great feeling. Eleanor has started oral chemotherapy which she will receive for 42 consecutive days, for four rounds. This can be taken orally through her nasogastric tube which means we can continue treatment back in Tassie. Our final day of self-isolation will be celebrated with Eleanor's fourth birthday. Another incredible milestone. We are well aware of the reality of this relentless disease, we don't know what is round the corner. But what Eleanor was able to do in the last year in particular after such an aggressive and rare relapse is remarkable. We will certainly take the small wins, and for the moment, we are so very thankful to be in this position. We have attached a video that was put together from the staff at Peter McCullum Cancer Centre and The Koala Kids Foundation showing Eleanor's radiotherapy treatment. This is how she has handled herself through a lot of her treatment. This highlights how amazing she is. We cannot thank you all enough for your love and support, everyone of Eleanor's supporters have played a part helping her to this stage. Jacqui, Rob Eleanor and George xxx

23.01.2022 Hello friends. We arrived in Melbourne three weeks ago from Columbus, which now almost feels like a distant memory. We were in quarantine for two weeks. We were unable to leave our apartment but were thankful for a small outdoor space and Eleanor being very accepting of the Coronavirus situation. Like everyone, getting groceries and other supplies while in isolation was tough but we managed. The hardest part was staying away from The Royal Children's Hospital. We knew Eleano...r's blood counts were low from her last antibody treatment but didn't have an up to date test. Each day we hoped and watched her and luckily she remained well and happy in herself. It was great to spend some downtime in our apartment after a pretty hectic last five months. Last week Eleanor had her cancer diagnostic scans to see where she is at. We are happy to share that Eleanor's scans last week were all clear. Relieved is an understatement. Eleanor continues to bounce back. Her blood counts were low but safe to start her next phase of treatment. Even though Eleanor is clear of disease this doesn't mean the treatment stops. It is business as usual for us, even in this difficult climate. Eleanor started her excruciatingly painful immunotherapy yesterday combined with chemotherapy as an inpatient. She will be there for the week. Currently she is in considerable amounts of pain from the immunotherapy and as a result is on a morphine and ketamine infusion to manage her pain. If we had a choice we would keep her away from hospital at the moment but as we've written before, neuroblastoma is extremely aggressive. We must keep the foot on the pedal. We cannot both be with Eleanor because George is not allowed on the ward. So it's a challenging time to juggle care for both our kids. We are however very grateful that Eleanor remains well and can continue with her treatment. Thank you all for sticking by us. We hope that you all remain well and safe with your familes. Big virtual hugs from us xxx

20.01.2022 Dear all of Eleanor's friends and followers, A week ago Eleanor was discharged from hospital from her immunotherapy treatment. Apart from the rigours of the actual treatment it was a fairly event free week spent in the hospital. As usual she coped really well. Eleanor doesn't normally eat too much as she is reliant on her nutrition through her nasogastric tube (tube which goes in the nose direct to the stomach), but in hospital she turned into what she called herself an "eati...ng machine!". She loved eating sausage and her "noony soup" (chicken noodle soup). She also recommenced her beaded journey. She receives different beads from different milestones and phases in her treatment which goes on a long piece of leather which can then be laid in a line. Her beaded journey is pretty enormous, and we haven't added to it for about a year, so all her beads from her American treatment will add significant length. Since being discharged we have been keeping very quiet. As we have mentioned in previous updates, although Eleanor copes very well in hospital she needs time to recover as it takes a very heavy toll on her. So some quiet time at home doing arts and crafts, playing with George (needs work on her sharing!) and watching her favourite shows on her ipad. As the week has progressed, Eleanor has been getting more energy back and has been recovering well. As always, thank you everyone for your loyal support. Much love from all of us

17.01.2022 A big hello to Eleanor's followers. Last Friday Eleanor completed her third round of immunotherapy in hospital. Another huge week of antibody treatment and pain medications to keep her comfortable. We were very relieved to see Eleanor get through her week without spiking a temperature or any nausea. She manages so well. Eleanor takes a good week to recover after leaving hospital. She copes so well whilst in hospital but eventually it does catch up to her. We give her plenty... of rest, pram walks, art and craft and her favourite current activity, leaf crunching! At home we administer a daily injection to help boost white blood cells, helping Eleanor fight infections and recover quickly to be ready for her next round of treatment. It is very hard to hold your child down for an injection but she is very resilient and recovers quickly after. The thought of it is the worst part for her. Eleanor's blood tests yesterday showed that she is improving slightly and should ready for her fourth round of immunotherapy in another week and a half. We thank you all as always for sticking by and following Eleanor's journey. Lots of love from all of us xxx

11.01.2022 Happy first birthday to our big boy Georgie

10.01.2022 Our dearest Eleanor. Today you turned four. You enjoyed the most special birthday and we loved watching you smile. We wish you a very happy week of birthday celebrations. You have achieved more that you will ever know in the last four years. We are incredibly proud of you xxx

08.01.2022 Dear friends of Eleanor We are extremely relieved to let you know that Eleanor finished her treatment in Columbus, Ohio yesterday after a clear scan of her brain and spine. We couldn't be prouder of Eleanor and her enormous achievement. Eleanor rang her end of treatment in Columbus bell loud and proud in front of us, her number one fans and her wonderful oncology team. We will always treasure this moment. ... Unfortunately the nature of treatment is to keep moving forward and attempting to keep disease under control and we haven't yet had the chance to reflect on the last five months. Some of the best and worst times we have endured. Our time in Ohio has abruptly come to an end. With the Coronavirus situation escalating, we have to urgently leave. Eleanor's immune system is low and this therefore makes her very vulnerable to the virus. We have taken every possible measure to keep Eleanor, George and ourselves as safe as we can while still having to fly to Melbourne. In a time of uncertainty we would like to thank you all for continuing to support us in giving Eleanor the best chance of cure. We feel part of a very special community of people. When we arrive in Melbourne we expect to self isolate to protect others and Eleanor and will then be starting Eleanor's full body disease control at The Royal Children's Hospital. Neuroblastoma is relentless and while we are celebrating clear brain and spine scans we must remain realistic that Eleanor still has a long journey ahead. Thank you all from the bottom of our hearts and please keep us in your thoughts as we attempt to keep Eleanor and George safe on our flight to Australia. Lots of love from the Oakley family

08.01.2022 Eleanor celebrated her birthday today with our family. Most of whom we haven't seen for 12 months. It was a very special day and topped off with Eleanor's dream ballerina cake. A huge thank you to Robyn from Cakes of Heavenly Indulgence who very generously created this masterpiece. Thank you to everyone for wishing Eleanor a happy birthday, we have loved reading your messages.

08.01.2022 Hello to all Eleanor's friends, Last week we had our meeting with Eleanor's doctor to see were she was at. Her blood count levels were still very low so she didn't meet the levels needed to continue with her planned treatment round of immunotherapy combined with chemotherapy. This combination made her so sick after the first round. In the last week we have had to go to hospital three times to replace her nasogastric tube due to her vomitting it out. This included a trip to th...e emergency department on Sunday to replace a tube which ended up being a seven hour stay. After the meeting with our doctor it was decided that Eleanor would proceed for this week with only the immunotherapy drug. This involves four doses commencing at around midday and lasting for nearly 15 hours. Eleanor coped so well with this round. Normally we would see her very ill for her hospital admission dealing with constant high temperatures, immense pain, nausea and diarrhea. But Eleanor managed to dodge all of these side effects and she really did an amazing job. We write this update after having been discharged early this morning and together again as a family. The covid-19 restrictions at the hospital only allows one parent at the bedside. As always we are super proud and in awe of her and how she coped for the week of treatment. A big shout out to all the amazing Mummies out there and for everything you do. We hope you all get spoilt for mother's day. Lots of love from us

08.01.2022 It is a difficult time for everyone at the moment. Lucy and her team at Neuroblastoma Australia have supported our family since the beginning of Eleanor's journey. Neuroblastoma Australia need our help to continue to support families like us navigate a cancer diagnosis, fund research to improve treatments for our children and ultimately find a cure for this incredibly agressive disease. This remains the most important thing to us, a cure for Eleanor and other kids with Neurob...lastoma. If you are in a position to assist, please read on. Donations over $50.00 also provide a child diagnosed with neuroblastoma an activity pack to keep them busy in isolation. Please note donations assist Neuroblastoma Australia not Eleanor's Fight. Thank you all from the bottom of our hearts xxx

07.01.2022 https://m.facebook.com/story.php?story_fbid=10164039635280262&id=765655261

04.01.2022 Hello dear friends of Eleanor,. Eleanor has now completed her first of four cycles of inpatient immunotherapy and chemotherapy. We spent a week in hospital for her first round. The treatment was very involved with two chemotherapy drugs being infused in the morning then the immunotherapy drug starting around midday running until early the next day. This was repeated from Monday through to Saturday morning. The first couple of days were ok but by the middle of the week she b...ecame extremely unwell. Eleanor experienced high temperatures, vomiting and diarrhoea and ended up with a bacterial infection. It was horrendous seeing her so miserable. We brought a very well girl into hospital and took home the opposite on Easter Sunday. Eleanor has not been this unwell at home from treatment for two years. It was extremely difficult to see. Since Easter Sunday Eleanor has been recovering very slowly at home. Eleanor has had two trips to day cancer to have two nasogastric tubes replaced after she had repeated vomiting which dislodged her tube. This along with her bacteria infection and diarrhoea made her recovery very challenging. She hasn't been interested in doing much until a few days ago. We were filled with joy when she asked to start her art and craft activities. We also take her and George on walks to pick flowers and spot mushrooms, Eleanor's favourite this week. The last couple of days we have seen her zest for life return which has been great. Eleanor's has lost her hair again, the third time in two years. This happened over a couple of nights. It came as a big shock to us. Our doctor said this wouldn't normally happen but said the volume of treatment she has had contributed. We are extremely disappointed for Eleanor, we could tell she was too. To see the look on her face when saw herself in the mirror discovering she has no hair again was heartbreaking. But as she does with every hurdle she faces, she was ok with it after we explained it will grow back. Her resilience is remarkable. Eleanor had an appointment with her oncologist on Friday and her blood counts are too low to commence her second cycle of treatment. This week she will continue to recover and have her bloods checked again next Friday with the hope of resuming the following week. Thank you for your continued support. We read every message. Stay safe and well everyone. Love the Oakley's xxx

01.01.2022 This week is International Neuroblastoma Awareness Week. Many people have never heard the word 'neuroblastoma'. Even for our families, the first time they hear... about this little known cancer is when their own child is diagnosed. Neuroblastoma is the most common solid tumour of childhood. It is almost exclusively a childhood cancer occurring most commonly between the ages of 0-5 years. Neuroblastoma takes the lives of more children under the age of five than any other cancer. We believe that raising awareness is key to gaining support for more research into better, kinder and more effective treatments for this disease. Please share this post with your community and help raise awareness this week. If you would like to know more about neuroblastoma, what you can do to support our families and fund research into a cure, please visit our website: https://www.neuroblastoma.org.au/ Thank you. #neuroblastoma #NeuroblastomaAustralia #2Little #NeuroblastomaAwarenessWeek