Hope for Hollie

Hollie and William got to enjoy a fabulous day at the beach last weekend, before the big week ahead.

First dip in the Mediterranean wasn't too cold for this time of year, and some normal time and family fun was a rare luxury.

Hollie will complete her scans/tests this week ahead of her big review.

Every time is nerve wracking, but this one will have a rather large price tag attached to the results.

Thank goodness the family are all together for this one as the new costs apply an additional layer of stress and anxiety to the situation.

We have been told that each cycle of inmunotherapy treatment that Hollie needs will cost 28,200 Euros (47,500 NZD). She will need a minimum of 5 cycles and we will learn more as the tests over the next couple of weeks unfold.

The information on this link is alot, but will provide some additional information on this new immunotherapy treatment that Hollie needs for those interested.

https://www.sjdhospitalbarcelona.org/en/fda-approves-naxitamab-immunotherapy-treatment-against-high-risk-neuroblastoma-used-sjd-barcelona

Asking is hard, especially after all the support we have received already, but we need help to raise this level of funds with our original pot now empty at this stage from the treatment so far. 😔

Please help us get Hollie the treatment she needs. We ask you all, from the bottom of our hearts to put your fundraising hats back on and get sharing her page so we can start to chip away at the overwhelming target before us.

It means everything to us and we are forever grateful x

Please follow and share Hollies journey on her page in the link below:

https://m.facebook.com/hopeforhollie/

Following some suspicious symptoms over the last 2 weeks, Hollie has had a scan and sadly our worst fears have been realised.

The cancer has reappeared in her bone marrow, which explains why her bloods had not been recovering as expected.

We now have to stop the trial to review the best alternatives for her, and our path for the coming months will change significantly.

We are devastated.

Being apart from the boys, and so far away from our support networks is making this time feel even harder.

We know we are in the best place for Hollie though, so will push forward and keep moving on. It is the only option.

The medical team here in Barcelona have been supportive and quick to get treatment started.

Hollie’s unwavering commitment to keep fighting means she will start more chemo again next week. This will hopefully stabilize the disease and give us time to plan and assess the next steps, which at the moment feel very daunting.

The latest immunotherapy treatment for bone marrow relapses in Neuroblastoma is available to us here, but of course, this will significantly prolong our stay in Spain, and also have further significant cost implications as there is no funding available. This means there may also be more fundraising required to move forward down this path.

One thing we have decided on is that the only way to get through is to be together as a family, so we are focused on making plans for John and William to join us in Spain for some time over the coming months, which is giving us a much needed something to look forward to.

We will update you all as we know more over the coming weeks, but just knowing your support is there means everything.

Kia Kaha

As we ventured out of a safe New Zealand, we donned our face masks and set out for our 30 hour plane journey. It has made us realise, even more, how lucky we are in NZ; safe from the worries of Covid, enjoying summer and sometimes forgetting what is going on in the rest of the world. We arrived without any issues and were kindly welcomed by a friends sister, so thankful for the help as we begin our time in a strange and new place. We began our first week with a full schedule of hospital appointments, which wasn’t without it's challenges. We met some lovely people, but for Hollie it was strange, new and pretty tough.

Week two was quieter for us, but Hollie’s blood counts continued to drop, a consequence of her last chemotherapy, and apparently to be expected. The hospital were fantastic and helped her really quickly and she began improving and feeling more like herself. By the end of the two weeks she had completed many tests, but also her 3 routine checks: MRI; MIBG scan; Bone Marrow Biopsy; and we met with her Doctor who confirmed that Hollie's scans are good and she was cleared for the trial!

The trial documents have now been signed: THANK YOU TO EVERYONE WHO HELPED US GET THIS FAR 🍾🤩!

Hollie’s latest blood test is also positive, her counts have improved and appointments are coming in fast now to get Hollie prepared for treatment. She is being scheduled for surgery next Tuesday for the placement of an ommaya reservoir (like a port) into her head which will receive the injection into the spinal fluid. They plan is to have this checked by next Friday to test the flow of spinal fluid (ventriculography). All going well they are planning for the first treatment of the on Friday 12 February. The arrival of the radioactive antibody (131I -Omburtamab) will still be dependent on flights out of the US, where it is made, 😬. So fingers crossed for a smooth timeline and transit🤞🛩.

I will keep you updated as we continue on, but just wanted to reiterate how grateful we are, and so very lucky to have had all your support on this crazy journey. We wouldn’t be here without you all.

Gracias y buenos noches xx

For more regular updates, you can follow Hollie’s journey on her facebook and Instagram page.

https://www.facebook.com/hopeforhollie

Instagram - @hopeforhollie

Simply a massive thank you to everyone who has donated to Hollie over the past few weeks and beyond.

The response has been beyond our wildest expectations, and to be able to hit the initial target of $400,000 to cover Hollie treatment costs within 3 weeks was an incredible feat, and a testament to the wonderful people in New Zealand and around the world.

It has also provided great relief to the Beatties to know that they can now fully commit to the trial in Spain and focus on the logistics of getting there and existing in Spain for several months next year.

We have had so many people getting in touch to ask if there is anything else the family need, and if they are still able to donate to the Hope for Hollie cause and continue fund raising, and for that we are truly grateful.

The simple answer to this is yes, the family will still have large outgoings above and beyond the treatment costs including travel, accommodation, living expenses in Spain and beyond, so to anyone who is still looking to help fundraise or make a donation, this will all still make a huge difference to their journey as they now move on to the next steps.

There is still a long road ahead.

With this in mind, we have removed the recently hit target from our page, and will now leave it as a blank canvas for people to give and fundraise for Hollie and her incredible family as they see fit.

Our thanks again go out to you all from the bottom of our hearts for the incredible generosity and love you have shown for Hollie, William, Jo and John.

We will keep you updated on Hollies journey on our facebook and Instagram page, so please follow for updates on how she is getting on over the coming months.

https://www.facebook.com/hopeforhollie

Instagram - @hopeforhollie

The response to the Hope For Hollie fundraising campaign has been completely overwhelming.

Our heart felt thanks go out to each and every person who has given to help Hollie get to Spain for her last remaining treatment option, we have been deeply moved by the incredible response and support.

It is at times like this that you realise that the human spirit of compassion is all you need to help you achieve your goals, no matter how big or small.

Hollie has now had her brain tumor successfully removed, and is starting more chemo tomorrow as the next step in the process. This will be followed by several weeks of radiation treatment, all working towards getting her ready for the trial over in Spain early next year.

We have made great progress getting towards our total, but there is still along way to go with the fundraising, so please continue to spread the word and help us get the Beattie family there.

Hollie has included a special video message for each and every one of you.

#hopeforhollie

https://www.facebook.com/hopeforhollie

Thanks again, we think you are awesome x

Hollie now has no treatment options left in New Zealand and has been offered a place on a trial in Spain.

Moving forward this is the only option to find her a cure.

The costs associated with this trial are astronomical and have been overwhelming for the Beattie's to comprehend.

The ball park figure they have been given for the treatment to date is $400,000

Fundraising has started and is in full swing, and any donations are vital now more than ever to enable Hollie to make the trip and receive this treatment.

Thank you in advance, we could not do this without you.

Hollie’s scheduled 3 monthly scan was on 25 September, and after such a good few months, although the usual butterflies hit our stomachs, we were hopeful. We weren’t ready for what subsequent and additionally required testing told us. Hollie’s cancer has returned and an MRI confirmed a 3cm brain tumour has grown in the last 3 months. A big deal for such a little girl. The Starship team amazed us again and within a week had scheduled her surgery for tumour removal this week on 20 October. We are of course, devastated, and struggling to process the news after such a good few months. Hollie has been amazing, as always, mature beyond her years and helping us through. We had chance to spend a fun weekend in Rotorua with close friends before Hollie’s surgery. Another chance for Hollie to show us her bravery as she took on the Skyline swing 3 times between rides down the luge!

Hollie was nervous for surgery, but stronger than Mum and Dad. She came out the other side, after 5 hours, with the best manners in the recovery suite, even cracking a joke about being a pirate as we put a wet cloth on her sore eye! She came back to the ward thirsty and hungry and amazed us all. Day 2, she looked a little more beaten up, swollen and bruised, but improved steadily throughout the day and after coming through her second general anaesthetic in two days, for another MRI, she was insistent about trying to get moving. The physio team came and she was up and out the bed in seconds for a huge hug. She amazes us every day and breaks out hearts a little more every time we think we can’t help her.

I will be in touch with more information – the next steps are going to be scary as we are at the end of the road for options in NZ and we are now looking at overseas trials as a possible next step. We’ll need you all more than ever now xx

At last I can share some good news. We came out of lockdown and met our orthopaedic surgeon. He booked Hollie in to remove the affected bone and put in a bone graft. As always, she has flown through this like an absolute trooper, 1 more week to go in a moon boot, and in 8 months removal of the metal plate.

Three weeks ago she went through her standard testing cycle and the scan results came back clear for the first time and her bone marrow continues to improve! Such amazing news and relief, just have to keep everything crossed it stays like this at the next scan in September!!

We managed to head off last week to visit family for the school holidays, a perfect time to celebrate. Thank you for all your support, it’s been a very long 2 years!

As we went into lockdown Hollie completed another round of testing. The hospital has become a different place, and we are pleased to have been able to stay home for the last 4 weeks. Unlike friends and family we’re more used to the world of lockdown and restriction, having spent a large part of the last 2 years keeping Hollie safe from more every day germs! We have really enjoyed the time in our bubble, except maybe some moments during home schooling ;) Hollie has thrived being at home; has had the most fun playing with her brother; and has even begun to eat normally at last!!

Hollie’s last scans still show residual disease in her left tibia, but her bone marrow results show no active cancer cells. Another small step in the right direction. She is being scheduled for more detailed scans of her left leg in the next few weeks. Following review of these and more detailed discussions with the orthopaedic surgeons, they will be considering removal of the affected bone as the next step. Hopefully this will mean that we can keep this disease at bay for a little longer. We’ll keep you posted, kia kaha.

Hollie has now completed 5 cycles of immunotherapy, she was an absolute trooper as always, and the lack of chemotherapy meant that we had much longer stays at home in between. We have started to try and reward her with some of the things she wished she could have been doing over the last year. We were able to leave Auckland for Christmas and have some much needed time with the family. We treated her and her brother to a spin on the Huka Falls jet boat and took a long weekend in Taupo with Grandma and Grandpa. Next we’re looking to book a campervan trip at Easter.

Preliminary results from the immunotherapy, however, although show continued signs of improvement, have not eliminated the disease in her left leg. We are waiting to have discussions with the oncology team as to what can be done next. Initial conversations are that she has already received every available treatment, but we are hoping for a clearer, and more hopeful plan in the coming months. Hollie will have another round of tests in April, and we will then find out what we do next.

So, in the meantime, we aim to reward her with some fun and normality. She will be able to resume school for the coming term. She begins Year 3 this year, and turns 7 in March, so we will get on with the party planning. At least this year she shouldn’t have to celebrate at Starship!

We want to take this opportunity to thank everyone for their continued support. In particular Harriet and Lucy for your hard work arranging the gruelling Metafit fundraiser; Players Sports for the ‘Hollie grip’; the NZ Black Caps for the unexpected publicity; and Torbay School for your continued support; as well as all our family and friends. We wouldn’t be doing so well if it wasn’t for all of you. Thank you.

Hollie completed her transplants in record time. As expected they weren't easy, but she did really well and we were pleased to get her home each time. Her scans showed further improvement after these 2 rounds and we progressed to radiation at the end of August. Hollie completed 3 weeks of radiation, which really was the easy part of all of this. She didn’t suffer any side effects and has had a good month at home recovering. She still has some progress to make, but has started her first cycle of immunotherapy this week. We have 5 cycles to complete at this stage.

Thank you for all your well wishes and prayers. It means the world to us not to worry about affording whatever Hollie needs at the moment and being able to reward both her and her brother, William, for their ongoing resilience and support for each other, they are both truly amazing.

(picture) Hollie meeting the pups from Canine Friends Pet Therapy at the Northern Health School

Hollie has completed her chemo-immunotherapy cycles. The doctors are really pleased with her response to this treatment and after a myriad of re-tests over the last 2 weeks have confirmed the go-ahead of her first stem cell-transplant next week. We are so relieved to have reached this stage, although this will be a tough test for all the family.

Hollie’s diagnosis means that she is scheduled for tandem transplants, each of which could mean 4-6 weeks on the ward at a time, with a few weeks break between them. The saving grace for her is that the transplant is the re-introduction of her own stem cells, so one less complication to worry about.

Hopefully after these the final stages of treatment will be easier on her, and us, and will end with the desired outcome.

Thank you for your continued support.

Having completed cycle 3 of the new chemo/immunotherapy treatment we underwent preliminary testing last week to see if we had made any progress. The fantastic news is that this new treatment combination is working. We are elated and so relieved.

For anyone who wants to know a little about the science, Hollie's particular scan (MIBG) gives her a score based on the extent of the disease across 10 sites. To go forward for transplant our aim is to have her at zero, at most 2. Before and after the initial chemo Hollie's score was 25. After 3 cycles, we are now at 5!!

We have now completed cycle 4's treatment of a planned 6 , and so fingers crossed for the next set of test results.

We finished our chemotherapy cycles in December and following repeat tests were devastated to hear that the chemo had failed to make an impact on the disease in her bone marrow. A heart breaking outcome, which has set us down a new path.

We were unable to begin the stem cell transplant scheduled for January, but after an agonising week waiting for approval from the US for an immunotherapy drug, we began a new set of chemo/immunotherapy cycles on 19 Dec and made it home on Christmas Eve after the first one. Hollie was home for 2 weeks and recovered really well from a grueling treatment. We have all had to pick ourselves back up and put our somewhat dented faith back in the new treatment. If this does not work, then we will be looking to Australia for some specific radiation treatment not available here in NZ.

Again, we thank you all for your ongoing support and love.

We would like to send a huge thank you to everyone that is supporting Hollie and us through this journey. It has been tough change for the family, but one that we are attacking head on. Hollie has been an absolute star and takes each week in her stride, she is an inspiration. We started cycle 3 of chemotherapy this week, but have a long road ahead. The support has been overwhelming and all your well wishes very welcome. Hopefully we will be able to update you with some good news in the new year.

Thank you again to everyone.

Jo, John, William & Hollie