School!

Words.

 Some powerful,

Some dangerous,

Some soft,

Some strong.

Some life-giving,

While others…

 You get my drift.

 A word spoken over you could build you up, or cut you down. We always have a choice as to how we use this language we’ve been given, as well as how we use our tongue to voice those words. When someone says something over you that is encouraging, directional and that which speaks life into someone’s future, it would be difficult to ignore and forget. As school teachers, Nat and I have had the chance to encourage hundreds, if not thousands of students and highlight qualities within them that would put them in good stead for the future. At times we even encourage students into a certain career path or speak over them something that we see in their future. Closer to home, Nat and I use that same principle with our children.

 Then there are God’s words! Some are general words and promises in the Bible (7000+ in fact!), while other words from God are specific, delivered through many ways. But one word from God, one promise, one picture that God pressed upon Nat’s spirit is that of Murphy starting school. All throughout 2023 Nat could not shake that word from God, and that is the promise that Murphy will start school. That word carried Nat through the hardest of times and gave light at the end of some of those dark tunnels.

 Friends, our son has completed 2 weeks of school! Murphy runs with the kids, sits attentively during reading time, climbs the blocks like the best of them, and occasionally gives a little cheekiness to his teacher. The staff at Cedar College have been beacons of light, shining bright each day and radiating smiles that are nothing short of inspirational. One beautiful moment of innocence took place last week, as Murphy ran over to the nurses room to have a ‘rest’. The nurse made a comfortable space for him to rest, yet after 2 short minutes he was up on his feet asking the nurses for a play. “What do you mean Murphy, I thought you needed to rest?” asked the nurse on duty. Little did that nurse know that our boy has convinced every nursing staff member at the hospital to play one of his many games. It’s hard to resist the lure of a Murphy asking a game of Uno, Pokemon battle, shops, teddy bear game etc. However; Murphy was unsuccessful in gaining a play buddy in this instance, instead he was walked back to his classroom and encouraged to focus back on the task at hand!

 God’s word to Nat early in 2023 has come to life, Murphy has begun school, and even better, he is THRIVING! His teacher asked if he needed a rest in his first week of school, to which Murphy responded, “Are the other kids resting, no, then I don’t need a rest!”

 Since my last post nearly 3 weeks ago, our family has been overwhelmed by the generosity of many of you. Murphy’s GoFundMe has seen over $110,000 in donations from over 350 donors towards our goal of $200,000! We have been blessed by every single donation, but even more so by the stories and testimonies of faith that has come from it. People sharing with us about their prayer and faith journeys growing  and the amazing conversations it has lead to as a family. Someone told me yesterday that it blessed their marriage greatly by working through how much to donate, as they were thinking a figure but then God prompted them to triple it. Nat and I most nights sit down and read through some of the names of those who have donated and we pray blessing over them and their families, and are overcome with how much generosity there is in our world. Thank you, from the bottom of our hearts. Together, you are giving our boy the best shot of a full life! 3 weeks ago at our ‘Miracle for Murphy ‘event I stood there in front of everyone and said, “Nat and I don’t have enough money to help get this treatment, can you help?” And you have responded, thank you! If you want to still give towards Murphy’s next step, please consider doing so by clicking below.

 Last week Nat and I were given the opportunity to share Murphy’s story of hope with the Advertiser; an Adelaide Newspaper, for the first time since diagnoses. Our deliberate choice to not share Murphy’s Journey during treatment on social media has been something significant during the entire protocol because it has allowed our focus to be on Calista, Hugo, Teddy and Murphy and our family. Nat and I have not had to keep the online updates regular through social media, or being subjected to everyone’s ‘thoughts’ on cancer or treatment. Murphy’s siblings have also been able to live their life not completely in the shadow of Murphy but they have found their own lanes to run in! Last week though we knew was the right time to share Murphy’s story far and wide and we have been blessed to share a story of Hope and a Good News story now that Murphy has completed treatment! These words were published in our state’s newspaper:

 Hope

Joy

Miracle

Future

 As we look forward to the most important scan in Murphy’s journey, his PET scan on Thursday Feb 15th (in two days!). PLEASE, can you, pray? We are unified and full of faith that this Thursday our boy will receive the word that he is cancer FREE. For Nat, her word that Murphy would start school has rung true. The promise that I have had and held onto is that I know I will be sat down by our oncologist and told that my boy is in remission. Since September 2022 I have clung to the promise that I will once again be in a room similar to where we sat when he was diagnosed but this time I will be told that Murphy is…

HEALED.

Please click here to contribute towards Murphy’s fundraiser > GoFundMe

Murphy's Christmas Cave Round 2

Let me begin with saying; “It has been a while”, and in this post I’ll share some of the reasons why I think it has been some time before posting.

 He’s doing well! Murphy’s oncologist shared this morning that she was pleased at how well Murphy approaches life, in spite of all the treatment. Recently our boy had a ripple test, where the doctor asks an array of questions to ascertain if the patient has been mentally affected by treatment. Some examples of questions are, “do you have any difficulty walking?” or “Do you feel pain?” With all responses Murphy answered in the strongest possible way, “I’m totally normal” And then after some guiding from Nat to be more ‘realistic’ in his answers, because Murphy’s walking is severly affected by treatment, and Murphy’s background pain has been a cause for concern, Murphy ignored the guiding and stressed to the doctor a second time, “I said I’m fine, completely normal. See, look at me run.” In saying all of this, Murphy has come out of last round of Immunotherapy well, and has had a three week break of treatment in which it has been delightful seeing him well and playful!

 It has been a busy season! I dislike using the word busy as sometimes in this current world, as it’s a desirable word for many who strive to be busy. However, in this instance, it is an apt word to describe the past month! Between school, dance, sport, swimming, functions, graduations, carols, end of year parties, birthday parties, dinners with friends and much more, we’re all a little exhausted, but in the best way! To see all of these pictures, make sure you click here to go to the blog page.

 We’re busy looking ahead. Over the last few blog posts I have alluded to future treatment options for our boy. Nat and I have spent countless hours over the past 3 months researching options and prayerfully considering ‘next steps’. Now I won’t bore you with the thesis of information that we’ve landed on and feel convicted to pursue, however; I will say that some things are falling into place. I will share that we are thankful to God that we live in an age where there is great advancement happening for children with Neuroblastoma. Next month we plan to host an information night where we would love your attendance both in-person or streaming online! Once we lock in details I will share with you.

Murphy was taken for a ride in these two great cars from some good friends

 Schedule this week. ROUND 5! This was going to be the final round of Immunotherapy, but thanks to Nat, there will be a round 6 in January. Due to Nat’s persistence and incredible care for Murphy, she was able to push for a ‘make-up’ round. This is due to rounds 2 and 3 being a lower dose due to the uncertainty of kidney damage. Round 4 was given at 100% dosage and went very well, therefore Murphy will have this round (Round 5) and next round, 6 at 100%. Then following the January dose Murphy will have his next MIBG test.

 Today has been admission day, and being the week before Christmas, Nat and Calista have been busy turning our favourite room on the ward into Murphy’s Christmas Cave! Check it out… Murphy plans to leave gifts outside the door or the other Children with cancer to stop by and receive as they are in hospital having treatment over the Christmas period!

Prayer - Please continue to pray that this round sees the end of all cancer be killed. Let every cell in his body be clear and disease free. May his kidney function remain stable. And finally, pray that the whole family has a wonderful Christmas season, as that is my prayer for you. Christmas is the very day where Jesus Christ entered the world, and 2000+ years later we’re celebrating that miraculous birth.

 Let me close with something that I think will be helpful for you, especially coming into the New Year season where we look back as well as plan ahead. God gave me the picture of ‘scars’ in looking at how to see events from 2023. A scar on the surface of the skin isn’t overly pleasing to see, but it is the body’s reaction to a breaking of the skin that causes this reaction. Scars of life could evoke many memories/emotions/thoughts for you, but for 2023 I see many scars now at the end of the year. When I think of the metaphorical scars of this past year, they are scars that represent what has now closed up and healed, rather than a scar that triggers pain or sad memories. I am choosing to see the good that has taken place this year, and my hope is that you too can look at the same good in your life and how we can run into 2024 with great expectations!

Hugo has graduated Year 6 and will be entering high school next year!

Ted was awarded the ‘Character’ award, he has demonstrated a beautiful spirit this year!

A rare lunch date with my boy. He loved margarita pizza, but calls the basil ‘weeds’. Hence why you can see his slice of pizza has no green weeds on it, haha!

GFR.CT.ECG.MIBG

So many acronyms all in the one week!

We are two days away from Murphy’s next MIBG, and I felt to update with where things are at regarding our superstar Murphy. Over the past couple of weeks, we’ve had some exciting and fun moments which I’ll share and explain how yesterday’s GFR Kidney test went.

The longer we go into treatment, the more we see him continue to choose joy and run with whatever task he has before him. Some of these challenging tasks of late have been have been getting hearing aids(his hearing has been damaged from Chemotherapy) and wearing new night splint boots to help his walking. The hearing aids have been moulded and fitted, and Murphy is collecting them tomorrow. Although we asked for a third test to ensure that he has in fact lost parts of his hearing, we feel it will be best for him to not miss out on crucial sounds in these next few years of development (it is hard sometimes writing ‘next few years’, because it is only through faith do I make such a bold statement). Until last week, Murphy was using night boots, which no longer were doing the corrective treatment they were intended for. Murphy’s calf muscles have become too tight and needing extra help to get his feet flat on the ground. The new boots go on at bedtime, and we try and keep them on through the night. Easy to say, but poor Murphy was crying in agony for the first few nights having these boots on, as they simply stretched his muscle to the point of pain. Last night was the first night whereby he didn’t scream out in the middle of the night in pain, praise God!

 Ok, now for an exciting update! Murphy has begun his schooling introductory visits! These transition visits are 2 hour sessions and require parents to drop off their child in order for the class of students to get a sense of what school will be like next year. Murphy knocked it out of the park! Last Wednesday Nat drove him to his new school, fought back tears, walked him through the yard, and then played with Murphy in his classroom to make him feel comfortable. Then no more than 3 minutes later, after another child hands Murphy a toy and he then turned to Nat and whispered, “you can go now mum.” (Insert Nat’s tears of joy here). Upon pick up, Murphy exploded with stories of all of the activities he did and kids he met. This was a huge answer to prayer, as it was a moment of normality. And what topped it off for Murphy was having his brothers there! Both Hugo and Ted happened to find new ways of getting out of class to ‘go to the restroom’ and find their way to Murphy’s class to wave at him through the window! Needless to say the boy’s teachers cottoned on quick to their newfound bathroom escapades and reduced their visit to only 1 window wave trip!

Last week the families pastor and our dear friend from church took Murphy out to Holey Moley, a themed mini golf course. Murphy could not stop smiling, and convinced Ps Kristy to battle him on the ‘Just Dance’ game too! It’s these special moments we don’t take for granted; a family dinner together at the table, a bounce on the trampoline with siblings, or mini golf with friends.

After what has been a few fun outings and moments of normal, Murphy had a big hospital day yesterday, with numerous tests and procedures. The most important test yesterday was the GFR test, and can I pause to thank you for your prayers, fasting and support going into this test. We were praying for a score of 60 or above, because below 60 means Murphy’s kidneys are in fact damaged and not functioning as they should. More importantly for Murphy’s situation, the lower the score, the lower the chances are for future medical trials. Last GFR produced a score of 54, which meant the medical team needed to work hard to swap out medications and reduce the dose of Immunotherapy in order to preserve his kidney function. Yesterday’s GFR produced a result that was worse than 54, and he is now at 49.7. We know the kidney’s can repair, but this can only happen if all treatment stops, which is something he cannot afford at this point.

It's not right.

It cannot be God’s plan.

How can God allow this to happen?

Are our prayers not heard?

How long until we see God turn ALL things around?

Another blow.

I’d be lying if I said some of these statements were not shared in frustration last night.

What I do know to be true is this, God knows all things, He is a loving God, a caring God, and timing is in His hands. Today’s Bible reading was the story of a guy with a funky name, Jehoshaphat, in 2 Chronicles 18. And after an entire army turned to take him down, this is what happened…

but Jehoshaphat cried out, and the Lord helped him. 

On my drive to work today I did just that, I cried out to God and prayed a simple prayer, “Please God, heal Murphy.” Not a complex or outlandish prayer, I cried this out to God. I kept repeating only this line again and again and again and again and again.

For those who have been praying and fasting over the past 4 weeks, thank you! In 2 days Murphy has his next MIBG scan, and this is another significant moment in this journey. Can you pray with me that on Friday we set to sit down with the oncologist and they deliver the news that Murphy is in remission.

 

Thank you for your heartfelt support!


Daniel

Prayer update

Hey,

 Thank you! Here’s a short video Nat and I put together for you.

 We are now two weeks into prayer for Murphy’s upcoming MIBG and Nat and I are incredibly thankful for your continual prayer and support for Murphy. November 17th is when the next MIBG scan will take place, and in that same week he will have a GFR Kidney scan on the 14th.

 Here’s the major prayer points:

1.     Zero cancer

2.     GFR result above 60

3.     Creatinine below 40

 With the above results, Murphy will then live a life cancer free and be able to access further treatment to limit the chance of relapse. Praise Jesus.

Last week saw Murphy complete his third round of immunotherapy. The doctors were able to slightly increase the dosage, with 63% of the full dose being administered. The reason for withholding the whole dose was to help protect the kidneys from any further damage. Murphy had a good start to the week, but after testing positive for Covid, he developed some respiratory issues that raised concern for the latter part of the week. On Wednesday Murphy tested positive, with Nat following on the Thursday and myself testing positive on the Friday. The dominos didn’t stop there, with other family members falling ill. After discharge the whole family was able to enjoy a restful weekend at home.

 This week Murphy has an audiology fitting for hearing aids. While it is noted that Murphy has had permanent hearing loss from the chemotherapy, out of faith Nat has asked for a retest before the fitting takes place. Nat has strongly felt to ask for the retest as we are believing and asking God for a Miracle, we don’t want to miss it if it’s happened! Can you join us in faith, believing for a good audiology test this week…

 Looking ahead, please keep praying for the upcoming scans for Murphy! Let’s see great breakthrough in the coming 3 weeks! Can you pray for 5 minutes a day, not just for Murphy, but whoever else God places on your heart to pray for, and if you want to join us in fasting (in whatever capacity you can) on Wednesdays as well. It has also been a delight to see the whole family join in, with Calista, Hugo and Ted going without screens and all technology on Wednesdays!

 Today in the car I had a rare moment where I had no passengers with me, and with clarity of thought I dreamt of receiving the news of Murphy scoring a zero in the upcoming scan. I wept. The vision of the doctor explaining that Murphy no longer has cancer in his body made me then thank God for how far He has brought our boy. Just over a year ago Murphy’s body was 95% full cancer, and today he has just under 5% to go!

Round 2 Complete!

It’s been a week…The news Nat relayed to me on Monday of this week caused a deep sigh, a few tears, and a slow breath exhaling troublesome news. I got so close to waking Jesus up! Let me explain. The Bible tells a story of a massive storm that the disciples were in with Jesus. They set sail and through the night a raging storm hit, a storm so bad that the disciples feared for their lives, and that fear led them to wake Jesus up. With much to glean from this story, I’m pulling one simple point, and that was Jesus’s response to the men, he dressed them down! Jesus questioned their faith! It almost reads like a parent telling off their child, “I’m not angry, I’m just disappointed”! On Monday, I nearly went to Jesus’ cabin in the boat and woke him up, but I realised that when Jesus led the disciples out to see, He knew everything would be ok. It wasn’t a surprise to Him!

 

Well, Jesus, I’m on your boat, and it seems like we’re in a storm, but let me sleep as well as you amidst the chaos.

 

Ok, let’s go back to the news part…It was Nat who was pulled into a lengthy discussion with Murphy’s oncologist on Monday. This meeting didn’t begin well, “I’ve looked over last week’s results of the Kidney test and their worse than what we first thought.” This is not how you want a conversation to start. And then the conversation ended with something less comforting, but quite fitting for the boating illustration above… “Nat, we’re in uncharted waters now with Murphy. We’re reviewing him every day and will adjust accordingly”.

 

Is this a storm in a teacup? No, it’s a storm in the ocean we’re in. Wading through the waves that I mentioned last post.

 I’m not waking Jesus up, I choose to lie-down next to Him on the boat.

  Now for some ‘facts’… Ok, what we have been told is that Murphy’s eGFR test came back as a 54. This number shows that he has kidney damage and the current neuroblastoma protocol asks for a score of 60+ to proceed with immunotherapy. Knowing there’s active cancer we cannot stop treatment, meaning Murphy’s kidneys will now likely be further damaged the more treatment he receives. Furthermore, a score lower than 70 may preclude him from medical trials, something which our oncologist is pursuing.

 For now, we hope the kidneys keep going strong. We are praying they withstand the medication and pain medicines that Murphy’s body is needing to process.

 One of the heartbreaking comments in the meeting was that with kidney damage, medicine knows “Murphy’s life expectancy is now reduced.”

 

Nat and I have wanted to update you with this news, but it has taken us some time to process it ourselves. We are asking that through the month of October, you spend a few moments praying for Murphy. I know MANY of you already do, thank you. Nat and I will be getting up earlier each morning to set aside some time to pray for our boy, and we would love for you to join us. And while you’re at it, don’t just pray for Murphy, pray for everyone and anyone you know who is going through a hard time – a storm of their own.

 With us all praying, things will begin to move.

 I can’t wait to see what God will do!

 Finally, let me fill you in on how Murphy is going despite the meeting. This week he has:

 

  • Smiled every day!

  • Enjoyed watching ‘Go Dog Go’ on Netflix.

  • Opened his own gallery! He’s painted pictures that he has sold to the staff here on the ward!

  • Made playdough with the play therapist.

  • Sung songs with the Starlight Crew

 We are well underway with round 2 of Immunotherapy! After a few weeks of delays and set-backs, we have finished round 2! Unfortunately, the doses have been halved to help Murphy’s body cope, but in the words of Nat, “God doesn’t need the full dose to heal Murphy!” What great faith. Nat has stayed in hospital the whole time with Murphy as I wasn’t able to see him due to a chest infection. Therefore Nat’s been exhausted beyond words, having little to no sleep in a ‘bed’ that is far from comfortable. Nat’s motherly love for her son has been remarkable, and I am so grateful for her dedication and sacrifice.

These two are the best of friends! Bags packed ready for Round 2.

 Murphy will hopefully be discharged today and have the whole 2-week school holiday break at home with the kids and I! Woohoo! Please pray he recovers fully and quickly, so we can make some amazing memories this holiday break!

Thank you so much for your wonderful support. Thank you for the many prayers and words of encouragement, they mean a lot to Nat and I. Our kids are blessed to witness such wonderful Christian community. October 2023, it’s going to be a great month for some miracles! Watch out for a video in a couple of days Nat and I will send out.

ONE

ONE

The good bit.

 I never knew how important one number can be. A single number can hold so much weight. Today’s number brought about a flurry of joy, Murphy scored a ONE for his MIBG result. What this means is that his body has gone from having literally hundreds, if not thousands, of tumours, to now having only one site containing active cancer. PRAISE GOD.

 Rewind to the fun bit.

Today was like many others in this wild journey, an opportunity to find joy in the midst of great trials. I applaud Nat for finding the most unique ways to make Murphy smile and laugh! And as we read from the Bible months ago, a JOYFUL heart is GOOD medicine. Today’s birthday for Murphy could be one of disappointment (waking up on a hospital bed without all of your siblings around!), yet Nat helped execute a fun filled morning for our 5 year old boy, Murphy! Neuroblastoma will not destroy him, and it sure as heck won’t kill his spirit!

 

At 4:47am, Murphy woke up in bed and called out to Nat, “it’s my birthday and no one is here.” To which Nat replied, “It’s still night time, please go back to sleep.” Fortunately Murphy took his mother’s encouragement, and fell back asleep. Fast forward an hour and a bit, Murphy woke up and enjoyed the first few moments of the morning with Nat, as they opened a present and slowed into the morning. Then at 7am, the kids and I, along with Nat’s parents, came up to celebrate his birthday! And in the wishes of Murphy, he wanted a Mario party. Therefore, Nat hired some costumes for her and I, and we dressed up for the occasion! It was a hoot! Calista, Hugo and Ted all loved giving Murphy his presents and we instantly began playing with the loot of toys. And with Princess Peach and Mario around, it was a heap of fun! A lot of the staff and other children loved the costumes too! Joy was had by all!

 

With the kids being driven to school, Murphy shortly thereafter was taken into day surgery for his MIBG scan. A lengthy scan of 2+ hours had us a little nervous. We were believing for a great outcome, but hesitant to get ahead of ourselves due to last MIBG shocking us at the results. As Murphy came out of scan, he wasn’t too pleased to have woken from the general anaesthetic, and we had a hard few hours comforting him. But like all hard moments, they have a way of passing eventually. Murphy was back smiling and playing with his new toys. We also had a lot of amazing hospital staff visit and celebrate his birthday!

 

As the day continued Nat and I still hadn’t heard any news - we were full of faith and in the delay felt peace more then anything else that God was obviously up to something. In the late evening after a different scan which was testing Murphy’s kidneys, we met with the oncologist in the hallway of the oncology ward - our home away from home. Nat begun by asking, “is it good news?” to which the doctor replied with a smile. That sweet smile laid the best foundation to what we were about to hear. The doctor asked, “do you want to know the Curie score?” Nat and I, without looking at each other instantly replied, “yes!” And it was then that we found out that his fourth MIBG test was a ONE! Nat screamed and launched into my arms. We were speechless, crying in the hallway. After a moment we looked over to find the doctor’s eyes to be filled with tears of joy too.

Amazing news! There is only one cancer spot left in the Liver, that is all. The tumours that were present in the last MIBG in the legs, skull, spine and marrow are ALL gone.

 

Thank You, Jesus.

 

The doctors took so long checking, and double checking, and triple checking, because the score was so drastic, needing the afternoon. to re confirm results before speaking with us.

 

 

Thank you for your support, prayers, and messages of encouragement. After a long year of setbacks, delays and bad news, it’s Murphy’s BIRTHDAY where we received this amazing news. Gods timing, faithfulness and goodness never ceases to amaze me.

HAPPY BIRTHDAY MURPHY

Radiotherapy

Hey,

 I understand it has been a few weeks since our last post, and for our many faithful friends and family we are so thankful for your consistent prayer and support. To be honest, it has been a very difficult time following the last MIBG scan. The results knocked me, and I struggled to understand how and why… Since the scan Nat and I have had many conversations, and we have talked with family and friends as well as Murphy’s medical team about the situation we find ourselves in. I have LOTS to fill you in with, as our family has had a few big weeks, therefore grab a cup of tea, and read on.

 

As a family we are believing for Murphy’s Miracle. This fight for Murphy’s life is building faith through bringing us all to our knees. We would love an instant miracle, and the full eradication of Murphy’s cancer, but are continually humbled through this journey and reminded that God’s timing is always perfect. We are so grateful for the many of you who faithfully uphold Murphy in your prayers. Across this world we live in, hundreds (if not thousands) of you regularly pray for a cancer free Murphy. Thank you.

 

I feel compelled to share with you that our faith and hope we have in God as the ultimate healer and protector of Murphy has not changed. Through many tears shed in the past few weeks, Murphy has brought many more smiles to everyone he meets as well as his siblings! We press on and believe for healing, while growing our:

 

Unwavering faith.

Confidence in God through the trials.

God-given perseverance through hardship.

 In this post I’ll update you on the progress of Murphy’s current treatment, and how we are all going as a family. With school holidays in full flight, I have many photos to share with also, therefore make sure you click on the actual web link to the blog post so that you can see all the photos. A true example of how in EVERY season God gives us so many moments of happiness and things to be thankful for.

 Murphy’s next phase of treatment is well under way, and he only has one week left of radiotherapy. He has had 8 sessions of radiotherapy, with 4 more to go. Each morning we have been going into the Royal Adelaide Hospital for Murphy’s treatment and despite the daily nature of it, and the juggling of family in school holidays, this has been the least disruptive phase of treatment for Murphy and our family. The treatment has caused some nausea, vomiting and fatigue, but very minor in comparison to other treatments in the protocol. The biggest obstacle has been the daily General Anaesthetic (GA), that Murphy has needed to stay motionless during the treatment. Waking up from the GA has caused great upset for Murphy, and he generally yells and is distressed and disorientated for an hour or so after treatment. It is heart-breaking watching him so distressed.  

 Following radiotherapy, the protocol has Immunotherapy beginning in August and finishing around February 2024, if all goes to plan. Coupled with the first round of immunotherapy, Murphy will undergo his fourth MIBG scan, with the hope of a miracle that would see that the cancer has significantly reduced. We have learnt that there is still active cancer in his spine, liver, legs and head that have been slow to respond to chemotherapy. Therefore, we are ALL hopeful that immunotherapy will kill these cancer cells. Beyond medicine, we are in more hope that our Heavenly Father can do what only He can do, and that is miraculously remove cancer.

 

Nat and I have been hesitant to investigate Google for information about this insidious disease, because cancer this rare and unique and works differently in every child. However, with Murphy being so slow to respond to treatment, it has becoming clear that the medical team would have liked to see his in remission by now. Murphy’s diagnosis of Stage 4 Neuroblastoma, with an original score of 27/30 in his first MIBG, and his genetic marker places him in an unfavourable category. This is not to be treated lightly. This cancer is smart, and can rapidly multiply quicker than many other forms of cancer. We are believing for a score of zero in his next MIBG, by the grace of God. However, once in remission, what the doctors have conveyed is that Murphy has an 85% chance of a relapse. (if this is a new statistic for you, it was for us too until very recently; heart-breaking) We are believing God puts Murphy in the 15% category of no relapse. Please pray for Murphy’s future, that it is full and life giving to many who hear of God’s saving power.

 

Our past month has not all been tough times though! God has gifted our family with so many blessings, too many to share of, therefore here are some highlights!

 

Make-A-Wish Foundation generously gifted our family tickets to Disney on Ice. A true blessing to watch and share of the fun as a family.

 With chemotherapy finishing, Murphy’s hair has started to grow back, which is super cute, Nat and myself and the other three kids are obsessed with playing with it!! Murphy is as relaxed about it as ever though!

 

An amazing friend from our church generously gifted her time to take some family pictures, and these snaps are truly a great memory to look back on in years to come and to celebrate this journey.

 

Nat and I have celebrated our 13th wedding anniversary last week. This anniversary hit a little different to previous ones, but Nat and I had the most amazing dinner out laughing and talking about God’s blessings over the past 13 years.

 

The family was able to go to the movies and see Elemental. Murphy loved it and sat motionless for the whole movie!

 

Our local church has been one of the biggest blessings to our family. They have cared for is in so many ways. Upon receiving the news of the last MIBG score, the lead pastor called for each of the campuses to pray specifically for Murphy and for a miracle. Thousands of people pausing their normal Sunday church service to press into prayer for our boy. At our campus, Ps Alice lead this powerful time of prayer, and shared a word with us Habbakuk 2:20, “BUT, THE LORD.” These three words are littered throughout the Bible. They often follow a tragedy or a failed outcome, but these words redirect our eyes and mind to the one true creator of all things. Murphy may still have active cancer, BUT, THE LORD is his comfort. Murphy may have an 85% chance of relapse, BUT, THE LORD will give him a full life. Murphy’s body has had a mountain of treatment these past 10 months, BUT, THE LORD still gives him joy and strength! Amen.

 

One final story to share. Through these hard times for our three other children, we have seen God still protect them and care for them. Calista has done so well with her friends, and serving in Kids Church, and applying herself in her dance. Ted has overcome so much through school, friends and sport and has brought great joy to us all. Hugo has also done so well as a big brother to Ted and Murphy and has a soft heart from his family. Hugo has also maintained great friendships and overcome many challenges through school and sport. However, as a dad, seeing your children go through the waters of baptism gives you so much delight and joy. Even in the hardest times for our family, Hugo wanted to be baptised and publicly declare his faith in God. Wow, this was a moment to remember for life! God still works in the strangest of ways and in the times when you would least expect. I am so thankful to God for finding moments to still bless our family!

But, The Lord

〰️

But, The Lord 〰️

One Prayer.

If I could ask for one prayer…

One prayer, that’s all I ask. Can you please pray for our boy right now. Pray for a test result that says there is no cancer. No Evidence of Disease (NED) is what we are desperate for. Tomorrow, Friday 23rd June, Murphy has his third MIBG test. And unlike the last test, we are wanting more than anything for a clear result. Can I ask that you pray tomorrow like you’ve never prayed before. There is one thing I know to be true, God listens to our prayers. You are part of an army across the globe that have been following Murphy’s Miracle, and it is moments like this that we need you to help us in storming heaven for Murphy. Here’s why…

Look at the bottom for a photo of where the ice cream ended, hehe!

 There has been a delay in radiotherapy, different to the information that I wrote in the last blog, because like all things, nothing has gone to plan like we thought. In the chaos of trying to solve the problem to a delayed MIBG test, we were informed radiotherapy could have begun without the MIBG test, however the radiotherapy oncologist decided they wanted the MIBG test before they begin to map how they’ll start the next phase of treatment. This was a tough blow for Nat and I, as we felt strongly that no time should be wasted in treatment. We have since realised sometimes God puts these delays in our path to be reminded that our hope is in Him and nothing else.

 Last Friday Nat and I sat down in a meeting with the radiotherapy oncologist, who gave us some hard facts. One of these facts is that ‘they’ (the medical professional team treating Murphy) were surprised at how slow Murphy was responding to chemotherapy. No one has conveyed this to us like that. It hit hard. The team were hoping for a zero in the LAST MIBG. (Insert a long and slow exhale). But where doctors have facts, we have faith. Nat medically couldn’t have children; we now have 4. At 5 months old, Teddy survived Meningococcal Disease and there are many more miracles to share. Therefore, because God has done it before, I believe He will do it again.

 

The Bible builds faith, because it is filled with examples of how God has healed many. With a single touch of Jesus’ robe, the woman was healed. The good news is the Bible is not dead. The Bible is the living and breathing word of God. Therefore, these testimonies that we become so familiar with are life changing, they’re faith building. Romans 8 has given Nat and I some of the best news this week, please let me share this with you to encourage and equip you:

 Romans 8:25 – But if we hope for what we do not see, we wait for it with patience.

 Please, can you join me in HOPING for a whole and complete Murphy. Disease free. Cancer free. And Joy FULL.

 Romans 8 is in fact packed with God’s goodness and grace, you may want to pause and read the entire chapter. There are so many verses in this passage that it’ll build your faith completely.

 

Tomorrow, Murphy’s MIBG will take place any time between 7am and 1pm Adelaide time. After which Nat and I are hoping to receive the results either later that day, or Monday next week. We will update here once we find out the results. Until then, please hope and pray with us, and wait patiently.

Our God is a God who hears and heals.

 Here are some pictures over the past two weeks, of Murphy spending some time doing school work online, baking, playing and waiting for his next.

Zero

〰️

Zero 〰️

Plans and Protocols

Hey,

Plans and protocols.

After a global pandemic, where the world overused words like pivot, adapt, alter and renew, it still is frustrating when plans simply… change. As humans, we are asked to present our plans before the Lord, and with this instruction alone in the book of Proverbs, it seems exciting! It’s exciting because we can plan and we can create plans! HOWEVER, a verse later, Proverbs 16 says that the Lord will order our steps. Therefore, when Nat and I presented our ‘plans’ to God in 2022, none of this was a part of them, but what we do know is that God is helping us take each step. Murphy’s 2022 and now ’23 has had nothing but hiccups and road bumps. Not a whole lot has gone to plan, and with each change, it takes its toll mentally and physically.

 

This week has been no exception.

 June 9th has been a date I have been looking forward to because Murphy was scheduled for his next MIBG, the test that will indicate how much cancer may still in his body. Last week Nat received a call from the hospital saying that there was not enough staff to complete this test, therefore there may be a delay up to a month in his overall treatment plan. The issue with this news, was that it would delay the start of radiotherapy, an outcome we did not want for Murphy. Our hope is for Murphy to have no delay, and proceed with the treatment protocol, as per the plan. Nat and I prayerfully considered all of the information given to us and felt in our spirit that we needed to explore all options. This led both the medical team, and us exploring options that had not befoe been considered and thinking outside the box. Do we fly to Melbourne, Sydney, Brisbane…Do we drive to Brisbane… Do we push for the system to get a trained technician to operate the MIBG machine here in Adelaide.

 

Monday.

 Waking up Monday this week the leading idea was to fly back to Brisbane for the test, but it needed Murphy to be cleared to fly, and due to his previous blood clots in the lungs, this proved a risky decision. A CTPA scan was booked for Tuesday, and if that CTPA scan showed no clots, then Brisbane would be a GO and we would fly out to Brisbane the following morning. A phone call later, told us that Murphy’s oncologist worked tirelessly over the weekend and found a way for him to start his radiotherapy treatment without the need of a MIBG scan to map the treatment initially. This means a break of protocol… something that is rarely even considered; however we know God makes a way for Murphy and hears our prayers. Smiles were had on Monday, when finding out this great news.

 

Tuesday.

 Tuesday brought about the CTPA scan, but Murphy’s body provided even more changes to the plan! The team could not access Murphy’s veins due to him having such intensive chemotherapy and therefore they postponed it until the day after, and Murphy would now go under General Anaesthetic.

 

Wednesday.

 Murphy lay there going off to sleep on the Wednesday for the scan, and after 2 hours, we were called to come in to be there for when he woke up after the scan. It was then in clinic while we waited for Murphy to wake up when Nat received a call to say that Murphy no longer has any blood clots! Praise God! Having no clots means that his body was able to correct itself, and that he wouldn’t need lifelong blood thinners! This is also a huge win for Murphy and a little bit less heartbreak for us as his parents, as for the ,last 3 months murphy has been on twice daily leg injections to dissolve the clots.

 

Friday 9th June

 No MIBG, as per ‘our’ plan, but not God’s plan. This is part of God ordering the steps. The new date is now the 23rd June for the MIBG. Can you please continue to pray that this test shows ZERO cancer. Nat and I firmly believe that this delay in the test is just a way to build even more faith, because we wait with great anticipation that our Heavenly Father has removed all cancer from Murphy’s body. I hope this will stir your faith too!

 

Thank you for your support in this season! Through the ups and downs, the lefts and rights, the plans and ‘change of plans’.

 

Dan