Airport Hugs

Seasons are changing.

Shorts to pants, tees to jumpers, hats to beanies and flip flops to shoes.

The hiatus from updating the blog means one thing, no news is good news. With seasons changing, sports swapping and families visiting, we’ve had our hands busy and our hearts full.

·      Teddy has finished  a season of Baseball.

·      Hugo’s finished his first season of  American football.

·      Calista’s training even harder, on the eve of a month full of performing. 22 shows in total, packed in 3 weeks of performances for the Charlotte Ballet’s “Nutcracker”.

·      Murphy’s joined a recreational league for basketball and will begin in a few weeks, therefore he’s been practicing his dribbling and passing skills with his brothers!

Outside of sports, all of the children have adjusted so incredibly well to their schooling here in the US, and making a multitude of new friends. Nat and I have had the privilege of visiting Murphy and Teddy for their lunchtime breaks at school, (where parents can join them in the cafeteria with some fast food) and it’s a joy to see all of their friends smile and wave from the other side of the cafeteria! Friends have been easy to make for all of our kids, which warms our parent hearts to no end and a blessing that we are thankful for! The teachers have been beyond amazing, loving our children as their own. I don’t know how we got so lucky, being blessed by such great neighbors, teachers, school friends and community for our family. All praise and thanks to God for all of His blessings.

Murphy showed his nanna around Bass Pro!

Over the past two months, as the seasons have changed and weather getting cooler, our family has been so fortunate to have two groups of visitors from Adelaide. Calista’s school friend from Adelaide added Charlotte as a destination to their USA  family holiday and spent a weekend with us. It was a delight showing them around this beautiful city, as well as spending many meals with them all around the table. The mum (mom) made a comment which stuck with me as they were about to leave, “if we only went to the touristy parts of the USA on our holiday, we would have missed what it’s like to actually live and do life in the suburbs of America.” New York and LA are busy places, lots to see and lots of people, but here in the homely ‘South’ the pace is a little slower and people are a little warmer.

Four Aussie kids dressing up for the fun neighbourhood halloween festivities! Murphy picked all the costumes for the family!

Bugs and Daffy from Space Jam!

After a long 30-hour trip, my parents are here! They have come and spend a month with us, and it has been a true blessing sharing life with them. For those who have ever lived away from family, the hugs at the airport mean everything and are moments you treasure forever. My mum and dad have missed their Grandkids so much and have loved just being part of everyday life here, see how life looks, and spend precious time together. We’ve managed to pack a lot into a short amount of time. We have packed many adventures into their last two weeks with Nanna and Poppa here including a Washington DC trip, school visits, movie theatres, sight-seeing, café crawls, front-yard plays, house jobs and most importantly chick-fil-a feeds! We also intend to see ‘The Ark’ in Kentucky and catch an NFL game.

 As a family we are really looking forward to this Thursday, celebrating Thanksgiving. How wonderful and thankful we are to have family here from Australia on this special holiday. Coming into this Thanksgiving week, we have so much to be thankful for. What are you thanking God for this week?

 As always, it’s important to update you with how Murphy is doing, because you have so faithfully prayed for and supported our boy. We’ve walked this miracle together, and I never want to miss an opportunity to highlight the miracle that has and is taking place. The stark reality is that for many (dare I say most) of the children with Murphy’s diagnosis, they wouldn’t have made it this far. Murphy is a walking, living and full of life testimony of God’s goodness. My parents can attest to how well is, even in the past 9 months since they saw him last in Adelaide, to now. God has been so kind to us, therefore all I can do is thank God for every single day. God is good and He does Miracles.  I hope Murphy’s smiles in these photos be the miracle you need to see today!

Our delightful neighbor took these at Davidson College, and we are oh so thankful for such talented neighbours!

Two loving brothers

After a movie at the Gem Theatre for a Church event we enjoyed walking around Kannapolis with Nanna and Poppa.

I will NEVER get tired of looking at his smile!

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.

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…

"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

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.