Helping Hollie Fund #doingitforhollie

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