Clear PET

It’s time to celebrate, just a short update of God’s goodness!

PET is clear (again), praise God!

Two weeks ago we received the news that Murphy’s PET scan is clear of any cancer. We were so thrilled and excited to receive this news! These PET scans are a usual matter of protocol for the clinical trial and a cancer patient in remission, but they still come with an unusual amount of concern for Nat and I, because we know the stark reality is that these scans are the only means to know what exactly is happening inside Murphy’s body and that fear that everything could change in just one day.

The day of Murphy’s PET scan, a couple of weeks ago, Nat woke to some sad news about a friend of Murphy’s. This other young boy, Xavier, who has fought the same cancer as Murphy, has relapsed. Our hearts sank, as we thought about his parents, siblings and close-knit family hearing this news. This is the second relapse for Xavier, and it now means more treatment and longer hospital stints. Please uplift this family in prayer, as you have for Murphy, that Xavier’s next scan can come back clear. It has been this news, on the day of Murphy’s scan, that caused some worry about our boy’s scan. This worry continued through the weekend, because the radiologist didn’t provide a conclusive report until MONDAY MORNING. Talk about three days of worry, doubt and sadness… but then to read the title of the doctor’s email “all clear”, we exhaled with a sound of “thank You Lord!”. 

Thank you for your incredible support and love, this clear can is another huge history making milestone in Murphy’s miracle journey.

Back to school

Summer is ending, school is back in session and a new rhythm of life is about to begin. If you haven’t read our last blog, click HERE, you’ll find a heap of summer highlight pics at the bottom and get to see the many visitors that have been through the Nowak home! There have been so many highlights through summer, and it has been a complete joy watching all our children settle into life here in Charlotte. I thought I would update you on a few things that have happened of late and give updates regarding the progress of Murphy’s treatment.

But first, may I give thanks… Reading Psalm 118 verse 1 last week struck me big time.

‘Give thanks to the Lord, for he is good; his love endures forever.’

God is good, all the time, and His love is forever. As Murphy has begun Kindergarten (Reception, for us South Australians) here in North Carolina, I can’t help but give thanks to God! You’ll love these pictures of him at school and the American school buses!! I have been thanking God daily for Murphys amazing progress and start to school, I have been thanking Him for the hundreds of people who have supported our family through this entire journey. With your faithful, prayerful and financial support, our family has been cared for in the most beautiful way. We have afforded the means to get over here, establish a home here, give our children some joy-filled and life-giving experiences this summer, all the while helping ‘pay the bills’ while Nat has not needed to jump into work straight away and therefore, she has been able to organize our family and love our children as best she can. Thank you to every single person who has prayed for and supported our family.

To wrap up the summer break, a wave of sickness went through the family, with coughs, colds, strep, croup and more, it’s safe to say that has all cleared and we started the school year fresh and ready (maybe not 100% ready, but as ready as we’ll ever be)… Murphy was due to start school Thursday 2 weeks ago, but Nat and I were woken up by Ted who ran into our room at 1:30am exclaiming Murphy was coughing. In our dazed ‘you woke me up’ state we stumbled into his room to find Murphy in a genuine panic and struggling to breathe. If you’ve ever had a child with croup, you’ll know the sound of the “bark cough” that Murphy was letting out which accompanied his panic. It didn’t take too long for Nat and I to make the call that he needed to be taken to the hospital. After a 911 call, 3 minutes later the fire engine was on our doorstep and four men way overdressed piled out, one holding a stethoscope. Not knowing this is common practice in the USA, I turned to Nat and gave a puzzled look as I asked, “babe, did you order a fire truck instead of an ambulance?!?!” Little did we know they’re often quicker than ambulances here and are all well-trained medics! Fast forward a little, the Paramedics came and took our boy to the hospital where they gave him some oxygen and steroids and sent him home just after 5am. This led to a tired boy who was in no shape for his first day of school, causing him to begin school Monday last week.

The first full week of school!

Thoughts in my head daily: “Wow! Praise God! I can’t believe it! How is this possible!? What the?! Look at him! He’s so full of energy and life!”

I have been speechless over the past week, because I simply cannot believe how well Murphy has adjusted to school. He has been placed in the most nurturing and caring class, with sensational support staff around him and teachers that just go the extra mile to care for him. His energy levels have been so high, with no aches, pains or complaints! Every day he had gotten off the bus with new stories to share and friends he wants to talk about. Praise God is all I can say! He is a living, walking, and learning miracle school boy!

Murphy is nearing 6 months of treatment here in the USA, and I thought I would share some points with you, for you to see what the clinical trial has involved so far for Murphy and as a little update for those that are new.

• DFMO is a stage 2 trial medication which is designed to combat the relapse rate of high-risk neuroblastoma.

• Children who fight through 18 months of grueling treatment have an 85% of relapse, and a significantly low chance of survival post-relapse.

• It is an oral chemotherapy medication, beginning with the highest dose (16 tablets a day), Murphy’s red cells declined, which pushed the team to dose-adjust and reduce to 12.

• The pills are crushed morning and night, and we administer through his G-Tube.

• 2 Months ago, the team of oncologists suggested Murphy undergo surgery to remove his NG tube and replace it with a G-tube, which has helped him integrate into school, and be more active.

• The main symptoms of the trail drug DFMO have been upset stomach, frequent vomiting, irritable bowel and reduced eating, high sensitivity to smells, loss of eyebrows and lashes, thinning and color change of his hair!  Between months 3-5 these have stabilized, and at present, Murphy has very few symptoms!

• It is a 2-year trial, with a series of PET scans, kidney tests, audiology exams and monthly check-ups.

• His care is based out of Levine Children’s Hospital, and it has been nothing but world-class for our boy!

• The DFMO trial has since closed to new patients, after Murphy had started it, which means even though they have stopped taking new patients, they will see out the treatment of all current patients. Praise God Murphy started when he did, and we get to be a part of the research and body of knowledge regarding high-risk neuroblastoma. It is such a privilege.

• Fun fact - Murphy tried his first Chicken burger a couple months ago (chicken sandwich for the American’s), and he liked it. Now every time he orders at Chick-fil-a he is torn whether to go for the nuggets or burger! Haha! Chick-fil-a remains his favorite treat after a long day at the hospital and has got him through many a blood draw.

Please pray for Murphy’s next PET scan in a couple of weeks, 6th September, that it comes back clear and disease free! These days never get any easier as a parent in the natural sense but thank goodness we believe in a supernatural God.

Much love,

Daniel

G Tube and Summer Fun!

Weather and time zones are discussion points which are arbitrary for most of our lives, yet consume so much conversation. Imagine meeting someone and not mentioning the heat if it’s a 110 degree day (40 degrees celsius), or imagine having a phone call with someone overseas and not mentioning the time difference. Hard to imagine, right? Nat and I have even been enjoying the Fox Weather channel, and some nights we sit on the couch and allow ourselves to be immersed in this TV channel for over an hour! The presenters are a pure joy to watch, as they take the weather so seriously, even though it has been a mild day with no real serious weather to note. I love the way these presenters can make a puddle of water feel like there’s been a highly unusual weather pattern that in a freak act of mother nature precipitation took place without authorities knowing it!... Weather and time. How does it consume us so much?I guess it's a common ground for all of us and something we all experience. Well, what Nat and I have come to realize is that cancer is something now that resonates with nearly everyone, as in most of us at some point in our lives knows someone who has battled cancer. A lot of conversations we are having with people we meet turn from us introducing ourselves and why we’re in Charlotte, to a line such as, “oh, my mother had…” or “I know of someone from work who had…”  So I guess in some ways, cancer is like weather and time, it's something that at a certain point in time has impacted us all. 

Cancer is intrusive, it doesn’t discriminate, it pervades through every class, nation and people group. In its simplest definition, it’s an uncontrolled division of cells, yet our experience for the Nowak family has been that even though it might divide cells within a single body, it unified a family, it pulled in a community of loving and trusted people and it bound together bonds and relationships which will never be separated. 

Genesis 50:20 (AMP) “As for you, you meant evil against me, but God meant it for good in order to bring about this present outcome, that many people would be kept alive [as they are this day].”

What Satan meant to do to bring harm, God uses for the benefit of His people to show His goodness, His healing power and give us Hope. 

Murphy, and the rest of our family, are doing so well. Summer break is in full flight and we’ve had a mixed bag of experiences. Here are a few:

• Family and friends visit from Australia and Atlanta

• Trip to Washington D.C.

• Summer camps for Calista, Hugo and Teddy

• Family trips to the neighborhood pool

• Birthday parties with neighbours

• Father’s Day celebrations

Medically, Murphy has been responding well to the reduced dosage of DFMO. This seems to be the right level for his body to feel ok, but for full effectiveness of the medication to still take effect. 2 weeks ago Murphy went in for surgery to remove his NG tube and replace it with a G tube. This short procedure has been the biggest gift to our boy. He now can jump in the pool without a 30cm tube dangling from his nose, or go out in public and have kids stare at him with looks of, “what is that weird thing on that boy’s nose”, Murphy has his “whole face back” (his words), and it’s a beautiful sight to see. After nearly 2 years of having a tube, I have found myself stare at him and smile, thinking of how handsome our boy is! Murphy has overcome a lot, and this is yet another little thing of normality back into his life. 

For those who think I’ve made a typo, the G Tube is a smaller tube that allows direct access into Murphy’s stomach, rather than a longer tube that goes from the stomach, up through the nose. The G Tube stays in place with a small balloon that is inflated on the inside of the device which means it won’t fall out. Allowing Murphy to live the fun, active lifestyle he wants to, including joining a Basketball team for the first time, when the season starts in November! The outside of the tube has a button type port which means we can give medication and other things if need be. The only abnormality to this surgery was that the surgeon needed to create a few separate incision sites to help put in the tube, as Murphy had so much scar tissue from his surgery last year that the surgeon needed to make extra incisions to go into his stomach and clear up that scar tissue. What a crazy world of modern medicine we live in! Praise God for giving us humans the brains to develop and deliver these procedures! 

Moving ahead with treatment, Murphy will now have regular check ups and bloods taken, but with all things considered, he will be able to start school at the beginning of the USA school year in August! Praise God! 

Thank you for helping by prayer and provision for our family to be here receiving this treatment and see the many blessings God has for our children. 

Remember this, satan wants to hurt us and divide us (inside and out), but God can do His miraculous work and restore both bodies and people.

Here’s a snapshot of our summer adventures…

PETS...

Hey, thank you for your support and prayers last week for Murphy! It was a busier than normal week with appointments for him, which felt weird being in hospital three times in one week, especially after a relatively ‘hospital free’ 3 months. I am pleased to report Murphy’s PET scan came back clear, which means we continue with the DFMO and remain hope filled that he remains cancer free!

This past week brought a flood of emotions to the forefront of our minds, with the night before Murphy’s scan being a difficult one to navigate. It is not that the scan was problematic or scary, the opposite in fact, but scans in general bring to life what us humans can’t see. It was a scan of Murphy’s body in September 2022 which revealed 1000+ tumors in his then 4yo body, it was that scan which created the roadmap for hundreds of medications to flow through his veins. But… it was also another scan in February 2024 which gave evidence of the miracle working power of our God! The PET scan last week took what was tucked away in the back of our minds straight to the forefront. And like any cancer patient will know, this anxiousness from scanning doesn’t ever fully go away. What I can say is that Nat and I didn’t dwell on the worry, we looked back at the cancer journey and found moments of God victories and healings that were synonymous with heartache from the suffering encountered by Murphy.

With summer heating up here in Charlotte, our family has enjoyed the late afternoon swims, visits from interstate friends and trips to the ice-cream shop and science discovery center. This week Teddy and Hugo are enjoying a basketball camp, Calista has two weeks of full-time ballet training and Murphy is enjoying summer fun at his pre-school. Activities for all! Nat and I might even sneak in a date at some point too…

To wrap up this quick update, I’ll share what God showed me the other day through the scripture Philippians 4:7, “And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.” I have always gravitated to the word surpasses in this passage, and for good reason, it highlights that the things of God surpass the things of this world. God is bigger than our human issues, He is stronger and He is above all. And to have this revelation days before Murphy’s worrisome scan, I had a peace about it that meant I was never troubled to the point of panic! I don’t know where you need that same peace from God, but just know that it is freely available.

Blessings.

Spunk.

Our boy has his spunk back! Murphy has shown off his funny, cute, quirky, and fun attitude over the past week, and it has been a true delight to observe. For me to explain why, I need to go back a couple of weeks. I will share some things that our family has been up to.

Let’s start with a few weeks ago, Calista’s birthday. A joyous time for our family, celebrating Cali’s 13th birthday in true Nowak style, with festivities happening all weekend long! Nat’s mum was in town so the three generations of mighty women, Glenda, Nat, and Calista went to the Charlotte Ballet’s Swan Lake on a Friday evening. This was followed by a big celebration breakfast that Cali’s brothers ‘helped’ with (I must say I did 99% of it)! Dinner was the focus of the day though, where we booked at a family-owned Italian restaurant south of Charlotte. Nat’s parents joined us, so we piled into the car and went southbound. There were no early sittings, so we took a late sitting and were swift in ordering our meals. Smiles were had and stories were being shared of our favorite qualities of Calista around the dinner table (a family birthday tradition). A short while later the appetizers came out, Brussel sprouts, now I know you might not be a fan of these green gems, but Nat and I love these little crispy salty sprouts, The waiter put them on the table, and it wasn’t before long Murphy smelt them and began vomiting. Murphy was in the bathroom and finished up in there before returning to the table. It was only a few minutes later he went again. At this time, we cancelled the sit-down meal and asked for the food to be packed up to take-away. A quiet 30-minute ride home for the whole family, as we were all a little sad for calista’s birthday meal, and Murphy’s sickness.  What I am so proud of with my family is that we all bound together and turned it around. Murphy went straight to bed as he was exhausted by this point and overcome with embarrassment and deep sadness for ‘ruining his sister’s birthday’ (his words). Calista walked up to Murphy’s bedroom and tucked him in, and as I lingered in the hallway, I could hear her comfort her brother with some sweet words, “it’s ok Murphy, you didn’t ruin my birthday dinner at all. Have a good sleep and I’ll see you in the morning.” Calista then joined us at the dinner table, where Nat got out the candles and made the ‘to-go’ food look that little bit fancy. All-in-all, a beautiful birthday meal ending.

It's these moments, a quick dinner pivot, where cancer still kicks you in the gut. But it’s these moments where our family shines bright and creates memorable experiences out of unfortunate situations. Hugo, Teddy and Calista have pivoted so well with the many moments like this one over the past 2 years, it brings Nat and I to tears sometimes thinking how incredibly all four kids have the most thankful hearts and have just learned to make lemonade out of lemons sometimes.

A week later, Nat’s parents left to go back to Australia and Nat and I found ourself out for dinner with another couple from church. We were driving home and FIVE MINUTES before we get home, a text comes through from the babysitter. “Murphy’s vomiting.” We call back instantly but no answer, so we drive a little faster (don’t tell anyone) to see to what extent he’s sick. As we pull into the driveway all the lights are on and all the kids are awake which is not a good sign. We walk into the room to find Murphy’s been sick all over the bed, and his NG tube came out. After giving the babysitter, a ‘vomit tip’ for her services, Nat and clean everything up and create calm back in the home. The following day we head into the hospital to get his NG replaced. It was at this appointment though where Nat felt to ask for some bloods being done, as Murphy’s color was a little off. The results came back quickly and confirmed Murphy’s red cell count had dropped dramatically in the last week even though it had been on a steady decline since we started DFMO in Feb. The medical team booked in for a blood transfusion on Thursday. After what was an upsetting night for Murphy in bed, turned out to be a catalyst for Nat asking for some bloods. And that Thursday bag of blood gave him back a lot of energy and some warm pink color in his skin!

I know I’ve shared two sad(ish) vomit stories, sorry if you don’t like vomit, but still Murphy has overall been well. Honestly, he has been full of that opening word, SPUNK. He laughs, runs, giggles, and plays pranks all day long! This week Murphy went in for a check-up a week after those bloods, and he is doing great! All numbers are up, and his red cell count is healthy. The implication though of that blood transfusion is that protocol stipulates that Murphy must dose reduce his level of DFMO medication to 12 tablets a day instead of 16 and he has also had to have a 10-day break from the Clinical Trial to recover from the transfusion. Can you please pray with us that this reduced dose will help his red cell count to hold now and that he won’t need more transfusions. One of our faithful friends, said this was not a setback for Murphy, just a way that God has customized the perfect DFMO dose for him.

Some other fun moments in the past few weeks have been:

-              End of school for Teddy, Hugo and Calista, now 12 weeks off!

-              Visitors up from Atlanta, so that Hugo could go to a concert with his friend Josiah!

-              Library visits.

-              Birthday parties.

-              Dinners with neighbors.

-              Pool, pool, pool in the neighborhood.

-              A weekend at the beach.

Coming into this week, we would love you to partner with us in praying for a couple of things. Firstly, the medical team has proposed a G tube, instead of an NG tube for Murphy. The advantage of this will be that tablet access be straight into his stomach, for medications, rather than through the nose meaning he will have a free smiling face for the first time in nearly two years. This conversation started a few weeks ago when we noticed Murphy’s skin to break down because of having NG tape on it for months on end. We meet the surgical team this week to discuss this option and book in for the procedure. Secondly, and more importantly, Murphy has his first check-up scan since remission. This PET scan is a little frightening for Nat and I, to be honest, but I am reminded that our faith says not to fear! Pray for a clear result! The PET scan is Wednesday June 5th. We can’t wait to share that murphy will still be cancer free after this scan.

Thank you for your wonderful support!

Daniel

"Yay, I'm getting my life back!"

“Yay, I’m getting my life back!”

To get something back implies that you’ve been missing something. This heartwarming remark from Murphy was exclaimed just the other day when he held up a swimming vest and looked at his mummy to ask, “can I now jump in the pool?”, to which Nat said back with a smile, “Yes, you can, you can jump, swim and play, just like your brothers! And go deep all the way in the water, you don’t have your Central Line anymore” Murphy paused, allowing Nat’s response to sink in and then leaped for joy and yelled, “yay, I’m getting my life back!”

I took a while in the kitchen to compose myself.

Here’s our son, Murphy, who has not complained ONCE from ‘missing out’, but adjusted to his then normal of having a central line, inhibiting him from swimming. Then late January he had a few hesitant swims in Adelaide at his uncle’s pool, but now he can run, jump and swim with no fear! These are the moments Nat and I have waited for, and now we can rejoice in how good our God is for getting Murphy this far! We have already made our mark on our neighborhood as we are the Aussie family who have visited the pool every chance we can since it opened last week. I can safely say Nat has claimed her pool seat and over the coming three months, many mineral waters will be consumed by her as she watches over our four kids laugh and play in the water! We have heard though by late July the water temperature resembles more of a bath than a refreshing pool, but knowing my kids that won’t deter them!

The reality is that doctors in Adelaide had prepared us for the worst, knowing that relapses happen as soon as 6 weeks after remission, but we are now 12 weeks on past remission and our boy is getting stronger! Murphy’s appointment  at hospital yesterday showed great bloodwork and signs that his immune system is repairing! Today also marks day 62 of having DFMO, and his body is becoming more stable with the new medication. Murphy jumps out of bed each morning, runs into my room, stands next to my side of the bed, looks into my eyes and declares, “it’s morning”. I raise one eyelid and attempt to convince him that, “no, everyone’s asleep, it’s still nighttime.” But Murphy has a zest for life and a strong willpower, he can also negotiate like a boss, “dad, look outside, there’s light. Can you now make me vegemite toast?” It is then at that point I know there’s no convincing him, he is well and truly awake for the day!

A few days ago Nat shared an article from an Australian newspaper that she was sent, which reported on four families fighting to fundraise to access clinical trials around the world for their children with neuroblastoma. Upon hearing that I was overwhelmed with gratitude for the hundreds of you that contributed to Murphy’s treatment. Thank YOU that we are not one of those families waiting to raise enough to get this treatment, we are instead on our third month of treatment! The medical team here in Charlotte have been a huge blessing, with every one of them caring for our boy as though he is one of their own.

People use the phrase ‘the dust has settled’, but I find that hard to visualize, after 3 moves in as many years, it has been a wild ride. The kids have felt the strain as well, settling into a new community at school and adjusting to all the ‘newness’ that surrounds them. Calista, Hugo, and Ted are shining lights, and although they radiate said light, there a moment of emotion that creep in. For the three big kids, in the short 14 months we were in Adelaide they had made strong school friends, tightened family bonds, found fulfilment through sports and expressed themselves at youth group and within their church community. I can encourage you though that we have found some friendly neighbors, landed upon a loving church community (in which we have already begun serving in) and are in the process of finding sports teams and dance schools for them. Can you continue to pray that they all continue to settle further into their life here in Charlotte.

I will end with sharing with you about one of the hardest tv shows I have ever watched. This show happens to be a children’s television show and brought about tears within me that I thought never existed. The plot, the characters, the soundtrack, the timing, all climaxing in a moment of genuine and true emotion from everyone here in the Nowak home. This one episode made global uproar as it led to some heavy debate about the screenwriters being cruel to their viewers. It is in fact Bluey, and the whopping 28-minute episode, “the sign” is a must watch. Aussies, you can see it on ABC iView, and our American friends, you can see it on Disney. Our children, particularly Calista and Ted, were so impacted it took them days to recover, spontaneously breaking out with tears across the days after watching it. And the thing which I believe resonated with them, is that this episode speaks to their experiences of needing to relocate and move. The visuals of the empty house and starting again feels like a common theme over the past 5 years, these kids of ours have had their fair share of that experience of ‘the sign’. Do yourself a favor and go and watch it. Even if you don’t have kids at home, I give you permission!

Thank you for your kind prayers and loving support for our family!

Daniel

Click HERE to see the video of Murphy playing in his new hospital.

American Spring!

April is here! And there has been a lot take place since the last blog. Thank you for your patience in waiting for another update. Our family has had 50+ hours of road trips, medical appointments, 30+ furniture builds, beginning at a new school for Ted, Hugo and Calista, a broken collar bone for Murphy, meetings with the home team of doctors at Levine Children’s Hospital, dinners with old (and new) friends, NBA games,  Science center visits, Easter Egg hunts, play dates, hot tub fun, visiting 5 new churches, meeting the great people at these churches, sharing with many the good news of God’s miracle working power and some much needed moments of family time interspersed throughout. Needless to say,…it’s been a whirlwind.

 Thank you for your incredible support in this journey with us for making the bold step to receive this care for Murphy. Nat and I have a peace about being here in Charlotte, and we know that this is the right move for getting the much-needed treatment for our boy. Murphy has now had follow-up appointments and has met the whole team at Levine Children’s Hospital, and they are incredibly lovely! The best news is that Murphy’s body is responding well post immunotherapy and his red blood cells are normalizing, as well as his white cells. Murphy’s kidneys seem stable, and he is feeling good in himself, praise God!

The bad news is that our new local NBA team isn’t doing well…but we are determined to cheer on our new local team! Go Hornets!

Calista, Hugo and Ted have all adjusted very well. They have had a few weeks now in their new house and have started school today! This was a decision that was only made recently, as Nat and I felt it is important for them to feel connected to the community by way of establishing friendships. Murphy won’t start school until August, as his schedule of hospital appointment doesn’t allow for that at the moment. The side bonus is that Nat and I don’t have to do schooling at home… don’t get me wrong, I LOVE my kids, but when it comes to teaching them, I’ll leave that up to their new teachers! All kids came home smiling and sharing stories from their day, therefore thank you to the many who have prayed for a good start to school for our children. 

Cali, Hugo and Ted on the morning of their first day at school!

Since driving from Hershey to Atlanta, our Nowak family has spent many hours in people’s homes sharing the journey and reliving the moments from the past 18 months of treatment. I am still unsettled in my stomach when I stop and think about how Murphy was able to endure the countless medications and terrifying treatment to kill this insidious disease, but at the same time share with people God’s goodness throughout the journey. You would know the highs and lows from journeying with us through this blog, but to relive it and share the stories has been difficult at times. I have learnt that it is important to look back, and as I have been reading through the Old Testament of the Bible these past few months I am reminded of the importance of remembering! God asked His cherished people, the Israelites on many occasions to simply remember what He has done and worship Him, but as I read on the Israelites kept forgetting God and moving on to new things to worship. I think of this is the context of our next season of treatment and this this here for our family, as we share and tell Murphy’s story to people, may God always be glorified, may we constantly share of His power and goodness and healing of Murphy’s cancer.

Similar to last blog, can I share some amazing testimonies to lift your spirit and make you smile:

·      We were able to share with a small group of faithful believers in Atlanta, a group of dedicated Christians that did not stop praying since diagnosis.

·      Some very generous families have blessed us with meals, homes to sleep in, help moving furniture, gifts and goodies, and even a second car for me to use as a run-around! WOW

·      We are now in our home eating some delicious home cooked meals, after many gas station meals during road trips!

·      Murphy was having so much fun at a friend’s house that he jumped and broke a bone, but it’s healing perfectly and there were NO complications!

·      Neighbors in our area have welcomed us so much that we feel a connection straight away.

·      The pool in our area opens on May 1st, and our kids cannot wait!

·      Glenda has been a super grandma helping look after the kids while Nat and I have set up the home!

As things begin to settle here in Charlotte, and my hands repair from building all of the flat pack furniture, we are all so appreciative of your love, support and prayers that have helped us get to this point.

Love, the Nowaks

Welcome to the USA

Hello and welcome to the USA!

It is with a warm and excited heart that I say our welcome and introduction to the United States has been with open arms. The medical staff and team at Penn State Hospital have been a true delight, as well as so many others that we have met in the past week. I can’t wait to share some of the amazing blessings that we have had from complete strangers, as well as the progress for Murphy getting his first dose of DFMO.

Before I begin, it would be timely to say a massive thank you for your prayers for safe travel, and a safe beginning of our stay in Pennsylvania. Check out some of the photos in this blog, and I know they’ll bring a smile to you and your family.

Please check out this blog not from just the newsletter, but the website, as you’ll get to see this fun video of us on the first day at Penn State Hospital!

The Journey here

From the teary ending in the Adelaide Airport, waved off by many family and friends, the Nowak tribe (plus grandma Glenda) walked onto that Melbourne bound plane. The incredibly friendly Qantas crew looked after us every step of the way. Someone granted us access into the Qantas Lounge in Melbourne, which made the 4 hours very comfortable before getting on our 16 hour flight to Dallas. The kids loved the movies on board, but I can’t say the same for the food options (even Hugo couldn’t stomach the whole breakfast meal we were woken up for). The Immigration staff were pleasant and waved us through to the Dallas airport, where the kids and I made a B-Line for Chi k-Fil-A for a bite of God’s Heavenly Chicken. Even though I should have had a healthy salad after a massive 20+ hours of travel, the chicken burger hit the spot! Another flight later we landed into Harrisburg PA. The kids were full of energy and helped gather our 14 suitcases and oversized car seats. We immediately were met with the Kindness of strangers, the was one beautiful lady sitting next to Glenda on the flight to Pennsylvania offered to help drive some of us to our house where we were staying and transport our luggage. This person proceeded to explain to Nat in the coming days how much that trip meant to her. WOW! Since when did I ever go out of my way at MIDNIGHT to help another family in need…

…

Can you believe the blessings didn’t stop there?! Just tonight, when I was asked about my accent by someone as I left the fast food restaurant (I promise we have been eating some healthy food in-between!), I shared about why we were here in the USA. It was a brief conversation, no more than 20 seconds. And then without me knowing, that person ran back into the restaurant where Nat was with the kids and asked if she was my wife, then gave her $20 cash and said she would pray for our boy. Again… when was the last time I hunted down someone unknown to give them some money…

…

Following a few days of bad jet-lag, we finally hit a few nights of full sleep, praise God! Our bodies were falling asleep at the right times, and the kids had a lot more energy! We checked out some sights in Hershey and had some wonderful family time. And this time was so sweet after the last few weeks in Adelaide packing, farewelling and planning. Some much needed family time.

This week has seen a few long appointments at the hospital for Murphy. He has now had his first dose of DFMO and the clinical trial has officially began. We are fully prepped with medication to now see him through the first few weeks here. The hospital where we went this week was the Milton Hershey Penn State Hospital, named after one of the great chocolate makers! And after this week’s tour of Hershey, I must say I had no idea how much of a champion he was, not just through employing nearly the whole town in his time, but giving all of his wealth away to hospitals and schools! The next time you’re eating a Reece’s Peanut Buttercup, or opening a Hershey Kiss, know the good that he did in his time. Being around so much of that free-to-give spirit that is so present in Hershey, you cannot go past the one who is the most freely giving, God. Our kids have been praying each night about our gratitude for what God has given us each and every day!

To finish, I must say that the families we have met in the hospital have been so inspiring, from the family who flew from Sweden, to the father and son from Perth. Each family has their own story of how they have fought to seek our further medical support for their children. One of the girls in the clinic who noticed Murphy leaving for the day turned and waved and said, “Goodbye Bluey”…awwww….How cute is that! Murphy’s aussie accent is rubbing off on others.

Thank you for your amazing support!

Love,

Bandit

Goodbye Adelaide

Goodbye Adelaide!

In the last week here in sweet Adelaide, we’ve been blown away by the outpouring of love and support from friends and family! Dinners, coffees, playdates and much more; what great memories Murphy and the family will have of our last few moments in the tail end of the dry Adelaide summer. For the locals, you’ll be pleased to know we’ve had our fair share of Haigh’s chocolate and Balfour’s donuts! We may need to diet when we land in the USA!

Murphy’s ringing of the bell. A universal celebration at the end of treatment.

Tomorrow we embark on the next chapter of this journey, we head to the USA for Murphy’s clinical trial.We will arrive in Pennsylvania, and go to Penn State Hospital, where Murphy will begin his treatment. We are excited to get this life long cure for our boy.

It has been only 5 weeks since Nat and I stood before our dear friends to ask for support, and from that moment we have seen hundreds and hundreds of people donate to Murphy’s GoFundMe. The humbling reality for Nat and I is that many of the names we see on GoFundMe are of people we have not even met! Thank you to the many of you who have been so generous and responded to the call for support. Financial support given has already been used to help secure accommodation, flights, visas and more. Thank you! As we said 5 weeks ago, Nat and I will close down the GoFundMe once arrive, this is because we knew our faithful God will supply all that we need, and we will not go without! If, however, you still had money to put towards supporting us, or some of you have pledged weekly support etc please reach out and I’ll share our bank details.

Moving ahead, can you please pray that our children settle well upon landing, Murphy’s kidneys hold up for the long flight and that we find and amazing church community to be a part of.

I have personally struggled to find the words to adequately say ‘thank you’ to everyone. However God gave me the picture of your thank you as a long term thank you where your thanks will be in the form of many things to come. In the coming years when Murphy is well and playing sport, thank you, when he finishes school, thank you, when he goes on and lives a full life, thank you. Each stage of life where Murphy grows up is a reminder of our thankfulness for your many faithful prayers over the past 18 months!

God is good, all the time.

Thank you Adelaide for your care and love for our family!

Murphy at an amazing fundraiser put on by these incredible friends!

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

Final Round

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

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!

Quick update

Not everything goes to plan. Today’s test proved that to be true. If it were up to me, we wouldn’t be in this scenario we find ourselves in tonight, and if today’s test went to “plan”, then we would be done with cancer. Today’s results took nearly the entire day to get to us, from arriving at admissions at 7am, to finding out the results shortly after 7pm, it was a looooong day. And in this long day Nat and I played out nearly every scenario, and our faith filled hope was the scenario that we would hear the oncologist say “Murphy is clear of cancer…”

Instead; we got a phone call during dinner with the family where Murphy’s oncologist explained that he is still a Score of 1, the tumour in the Liver is still present and active cancer cells.

Insert sad face.

Sad face, not angry, not devastated, not even numb, just sad. The battle continues for our brave boy. Telling the other kids this news was hard, because we never want to discourage their faith in God, and they have been so constant in their faithful prayer for their little Brother.

There is still a positive side to this. God’s timing IS perfect, and in believing this in it’s entirety means God has ultimate control, as He’s all knowing. Nat and I get to watch and rest in the fact that God’s timing is always perfect and He’s not running late for His miracle healing of Murphy.  

So, the good news is… the final tumour IS smaller. Praise God. We are dealing with something now; so small, surgery isn’t really the answer. To attack it surgically rather than with the remaining immunotherapy means we would possibly limit the chance to find any other microscopic tumour cells.  

Thank you for your unending prayers. Please keep praying for the eradication of cancer in Murphy. Can you also pray for his siblings, and may they remain strong for their brother. My faith is stirred even more, because if this all happened according to our textbook as humans, where’s God’s chance to do His part?! 

Murphy was set to start immunotherapy on Monday 20/11, but after today’s results the team have postponed this to work out exactly what these results mean for his kidneys, the remaining cancer and how best to move forward for Murphy.

Daniel  

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.