Final round.
Final round.
It’s difficult writing that to be honest, hence I wanted to write it twice. Filled with mixed emotions and a dose of uncertainty and fear. Now it’s not the fear that gets me, fear of life or death, I am convinced Murphy will live a full life, but it’s the fear of being let down (again) with unfortunate results from a scan or another curve ball in the future. In spite of all of that human emotion on my end, Murphy begins his final round of immunotherapy…TOMORROW! The 18-month treatment plan ends this week!
Induction chemotherapy
Major surgery
High-dose chemotherapy
Stem cell transplant x 2
Radiotherapy
Immunotherapy
…
Inhale.
From the deepest part of my heart I want to thank you for your support. You have allowed me to ramble on through these blogs, fumbling through words to express myself as we have walked this cancer journey together, supporting Murphy. Your prayers are appreciated, your kind words of encouragement brought warmth and your many gifts of time, meals and presents filled our stomachs and comforted our entire family through life’s difficult rollercoaster.
After what was a beautiful Christmas break filled with family and celebrating the birth of Jesus, our family went on a week-long driving holiday to Sydney! We left New Years Eve, and like most people, Nat and I sat down on that night in the dusty dry surroundings of Hay, a town situated in the middle of 300+kms of NOTHING but flat arid land. In the caravan park after the kids went to bed Nat and I looked back on what was a hard but triumphant year! After smiling and laughing our way through stories from the year, we put our eyes on 2024, and it is here where I want to talk to you about what is ahead for Murphy. This holiday was much needed, as it allowed us all to be together for the longest time since diagnosis and see some beautiful parts of Australia! Murphy loved eating Subway all across NSW on our drive, splashing his siblings in the pool, seeing the Sydney Harbour Bridge and seeing family in the Blue Mountains. Now before I go any further, here’s a bunch of holiday pics that’ll make you smile!
Nearing the end of treatment according to the Australian protocol, our family has decided to seek further treatment. The research for this began last year in September when Nat opened a conversation with our oncologist to find out what else we could do for our boy to give him the best shot of living. This began a series of long and difficult conversations for our family, but the advice given was that we need to keep pushing forward to see Murphy live that full life that we all dream of him having. The doctor came back with a number of clinical trials that are taking place around the world, but one stood out to her, and which we prayerfully agreed to be the best option for Murphy and the family.
DFMO.
Four letters, representing a drug, a substance that a group of doctors have dedicated their career working on. The purpose of said treatment is solely to prevent relapse for high-risk neuroblastoma patients. Aka, Murphy.
GOD.
Three letters, representing something far more powerful than a drug or a treatment. And if you’ve read any of our blog posts you’ll know that we are firm believers that it is God who has given the intellect for the doctors, and therefore to God be the glory for Murphy’s present condition we find him in; joy filled, strong, alive, breathing and running around like Sonic the Hedgehog! This boy, Murphy, is here because God has a great plan for his life, and you and I simply get to watch!
Recently I’ve been deciding to take different turns whilst jogging and going down different roads. Although these roads are in the same suburbs I’ve ran in for years, it has revitalised how I’ve run and provided a whole new experience! A positive experience. What used to be an arduous task of running for an hour has turned into pioneering new courses! Why I share this boring information with you is that I do feel like it’s Murphy’s turn to make a new path for patients with stage 4 high-risk neuroblastoma. Murphy has been accepted into a two-year trial for DFMO in the USA! But before that begins there’s a few things I’m desperate for you to help with.
On January 25th (11 days away!) our family is hosting a Miracle for Murphy night at Futures Church, Paradise (yes, that is the name of a suburb here in Adelaide!). 7pm in the foyer. Please come, have some coffee and dessert with us to hear, see and celebrate what has taken place, and what is ahead for our family! All of our kids are excited to see you and share with you. There’s one thing though, please reply to this email blog and let us know if you plan to attend, to ensure there’s a seat and for catering purposes. Feel free to invite your family and friends to come as well, but if I can ask you not to share on social media, that would be appreciated. The night is hosted by our family as a thank you to you, just come and listen. We are mindful of the MANY supporters around the world who cannot attend, therefore we will post a highlights reel and information from the evening following the 25th of January. Through the celebrating of highlights, we will also share why we know the appropriate next step for Murphy is to head to the USA for the clinical trial. As any parent would understand, you would go to the ends of the world to help your child, and that is what we feel to do. Please pray with us that God is in all things. If you feel to financially support Murphy’s next treatment phase a GoFundMe that has been set up. Should you not be able to attend the Miracle for Murphy evening, you can access the fundraising link HERE. We know that God will provide all that we need for this pioneering move.
Over the many months of treatment you would have read of the power of prayer, and can I ask you continue to uphold Murphy and our family in the following prayer points:
1. This week’s immunotherapy is well received in his body
2. The MIBG scan on Febuary 16th is CANCER FREE
3. Preparations for USA come together – visa, medical trial, planning and packing etc
4. Funds are met through loving and generous supporters
Thank you again for your amazing support! I hope to see you on the 25th of Jan!
Daniel and Nat
