ONE

ONE

The good bit.

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

 Rewind to the fun bit.

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

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

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

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

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

Thank You, Jesus.

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

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

HAPPY BIRTHDAY MURPHY

Birthday Tests

Tomorrow Murphy goes in for his fourth MIBG test. This is the main test which indicates how much cancer Murphy has in his little body. If you are new to reading this blog, you may now know that Murphy began his cancer battle in September 2022, and he received a score of 27/30 on his diagnostic MIBG test, resulting in a stage 4 diagnosis. Cancer was riddled through his body in a way unimaginable. Murphy’s scans had shadows and black marks from the top of his head, through to the soles of his feet. After horrendous, sickening, and intensive Chemotherapy treatment, Murphy then scored a 10/30. In June of 2023, following Surgery, and dual Stem Cell Transplants and high dose chemotherapy, Murphy’s third MIBG scored a 6/30. It was at that point Nat had to be asked if we wanted to continue treatment as prognosis and outcomes in a medical sense did not look promising.

A question no mother should ever be asked.

Nat answered the doctor with a firm, “of course we will continue treatment, we will treat for cure, nothing less.”

With that level of faith, Nat and I have witnessed the inner strength of Murphy shine. Murphy punched his fist high in the sky when we told him that there were ‘less lumps’ in his body. Yet, Nat and I were fighting off tears as we delivered this news, knowing that the journey ahead for Murphy was going to get much harder because we are nearing the end of the treatment protocol. Since June, Murphy has had radiotherapy and one round of immunotherapy and we are believing that tomorrow will be a GREAT day to celebrate his healing.

Our hands are out, holdings yours, in unity, prayerfully asking God to show off His miracle working power!

He’s done it before, He can do it again.

This lyric has pulled me through some tough moments, knowing and resting on the fact that God has performed some spectacular miracles before and now we can rest on the fact that He can do it again. Our church has produced a worship album unlike any other; full of hope and melodies that fill your world with great encouragement. Over these past few months, I have found myself standing in worship at church a complete mess as I let go of our family’s situation and look to the creator of the heavens and earth. There can be a lot said for lifting our gaze from ourselves and onto God. The more you do, the more you begin to appreciate everything.

Thankyou God for the air I breathe.

Kidneys…

 They’re the little filters in our bodies which punch well above their weight. This week Murphy’s kidneys have shown signs of being hurt by all of the medication and treatment. Something that his oncologists and Renal team are calling Acute Kidney Injury. Murphy has been admitted this week for a few days to get on top of his high blood pressure and poor readings of his blood and impaired kidney function. This has been another serious side effect of his intensive treatment that now doctors have to manage. Please pray for a return of full function for his kidneys.

 Murphy’s 5th birthday is tomorrow. September 1. A day of mixed emotion. Joy on one hand celebrating life, but sadness on the other, reflecting about the Murphy we knew on September 1 last year. Murphy last year was bouncing off the walls, enjoying pre-school and splashing in the pool. These past 12 months have matured him and made him grow up in a way a four-year-old boy should never have to. Sometimes Nat and I do struggle to look back at photos of last year before his diagnosis and talk about memories and sometimes grieve the innocence he had, and the happy healthy boy we remember. This year has seen murphy endure:

 Countless tears.

Worried nights.

Long stays.

Constant alarms.

Hopeful tests.

Heartbreaks.

Weary spirits.

Pain.

Disappointment.

 But, The Lord. This phrase points us to what God has done. In faith we have tears from joy, comfort in the waiting and confidence for the eventual victory! Our God will keep our boy on this planet for many more years to come.

Murphy will live a full life.

Murphy will get married.

Murphy will have a family of his own.

Murphy will be strong.

Murphy will be healthy.

Murphy will be a walking Miracle – He will run like Sonic.

Happy Birthday, Murphy.

From me to you, Murphy. When you read this one day know that mum and I are so proud of you. You have shown us how to be brave, have faith, and overcome any obstacle. You’ve shown us what it is like to choose joy and have hope. You have made us smile, laugh, and focus on what matters most. Murphy, we love you so much!

Radiotherapy

Hey,

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

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

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

Unwavering faith.

Confidence in God through the trials.

God-given perseverance through hardship.

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

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

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

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

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

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

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

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

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

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

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

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

But, The Lord

〰️

But, The Lord 〰️

One Prayer.

If I could ask for one prayer…

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

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

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

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

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

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

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

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

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

Our God is a God who hears and heals.

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

Zero

〰️

Zero 〰️

Plans and Protocols

Hey,

Plans and protocols.

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

This week has been no exception.

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

Monday.

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

Tuesday.

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

Wednesday.

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

Friday 9th June

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

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

Dan

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Home

Home.

 Is there anything better than the feeling of being home?! Home. A word that I have dwelt on in these past few weeks. I have had to pivot between the needs of work, hospital, and ‘home’; however, when I was on the phone with Nat the other day, I used the word ‘home’ as a reference to hospital unknowingly. It was after the fact that I stopped to consider what really makes a HOME? Nat, Calista, Hugo, Teddy and Murphy. They are my HOME. My heart has been broken over the past three weeks because I have wanted to be there for Murphy, yet I have wanted to still care for and be present with our other three champions and now the constant juggle can settle for a while. We are all HOME together. Nothing compares to being under the same roof, in our own beds, and waking to the sounds of the kids chatting. Bliss.

 We’re home.

 Murphy’s home.

 8 long, tiring, exhausting, sickening and horrific months of Chemotherapy have come to an end. This week marks the end of Two cycles of high dose chemotherapy, 5 rounds of Chemotherapy, Stem Cell Harvest, Major Tumour resection surgery and Tandem Stem cell transplants. DONE.

Murphy has endured a move to two different cities, met dozens of nurses and doctors who have administered over 100 different medications through his tiny and frail body, and he has done so with a strong and vibrant smile and a FAITH IN A GOD WHO HEALS. Murphy knows his miracle is coming.

After the harrowing realisation that things get worse before they get better, Murphy had a terrible crash within his body before his stem cells found their home in the Bone Marrow and accelerated the growth of fresh new white cells. Last week Murphy’s white cell count jumped from 0.0, to 0.2 then a day later, then to 1.0, and 2.9 a day later. Within a matter of days Murphy was taken off a half dozen pain medications and he rapidly improved! Isn’t it interesting that white cells are God’s design? Our human bodies need dozens of medications to replicate what God has given us all from birth, white cells. It was these new white cells that helped Murphy get home. Murphy’s treating oncologist for the week said his recovery was “GODSPEED!” Murphy was wheeled out of the ward in his pram by a very teary mum, and after not walking for 14 days, when they reached the ground floor, Murphy got out of his pram and walked out of the hospital all by himself. Nat and I believe this was a clear demonstration of his sheer determination in wanting to not take the easy path but make a statement by walking out of the hospital, He is on his way to victory! As Nat says daily, “Murphy is an inspiration.”

This most recent hospital stay has highlighted the resilience of our boy, and the endurance of our other three kiddos. Calista, Hugo and Teddy didn’t pick this to be their life (none of us did!). What we have seen in our kids though has been a beautiful willingness to not let this season of life defeat them. Calista has had her 12th birthday in recent weeks, and rather than selfishly being angry about her family not all being with her on her birthday at home, she chose to have her birthday dinner in the parent kitchen on the children’s oncology ward. Things just look a little different for our family this year, including Mother’s Day. Nat has sacrificed everything she has to care for her boy, and her Mother’s Day this year was spent in a hospital room with Murphy, who was fighting for his life. Nat’s love for all our kids is unending. We absolutely made the most of the day, the kids and I getting to love on Nat and choosing joy as a family instead of despair!!

 . . .

 Next Treatment

 Late June will see the beginning of a 6-week course of radiation treatment for Murphy. This comes with further issues because Murphy will need daily general anaesthetic for 42 days. It seems unimaginable, but the accuracy and precision of the Radiotherapist is crucial to its success. Therefore, he is likely to become extremely fatigued. Following radiotherapy is immunotherapy. This form of treatment will last 6 months and hopefully finish early 2024. In the coming months I will explain more about this phase.

Biggest Prayer Point To-Date:

JUNE 9th, 2023. On this day Murphy is going into hospital for his third MIBG test. I have written about this in earlier posts. This test is unique to Neuroblastoma and helps to grade the level of cancer within a patient’s body. Murphy’s first MIBG was conducted in Brisbane in September and resulted in a Curie score of 23/30. This is how he was diagnosed as Stage 4. Nat and I purposely did not ‘Google’ this at the time, but we knew this was labelled by the doctors as ‘Stage 4, high-risk, unfavourable Neuroblastoma’. Our precious four-year-old boy had cancer everywhere, from his scull to his feet. After 5 rounds of chemotherapy, Murphy was tested a second time, and received a Curie score of 10/30. Praise God. However, we need you to pray for this next test on the 9th of June. I am believing that Murphy will be given a Curie score of zero. All cancer removed. Psalm 103:3 “(The Lord) Heals all your diseases.”

Dear Lord, great is Your name, and in that name, the name of Jesus Christ, we pray your healing power of Murphy’s body.

Other Prayer Points:

·      Murphy’s recovery. Murphy has lost some weight, and it would be great for him to see an increase now gradually in weight gain.

·      Murphy’s joy.  

·      Calista, Hugo and Ted. Pray for their endurance over the coming months.

Everest

Hey,

Thank you for loving our boy Murphy so much that you are partnering in prayer for him! To help share with Murphy your wonderful prayerful support, can I ask you to do something for us? Can you write in the comments section below both where you’re praying from (geographical location) and what scriptures you have found helpful or you declare when you intercede for Murphy? I would love to personally read them and share them with Murphy (and the other children!).

OK, onto his current treatment. High dose chemo has begun…

Murphy has and will continue to show us his incredible character through this next round of treatment. Here’s one short story to show how proud I am of his strength. Tonight, Murphy had to have a needle in his leg to thin his blood, treating the clots that have formed on his lungs. This needle is not a large needle, but murphy has to overcome the fact that he has this injection in his leg twice a day. Murphy knows that he needs this needle morning and night, and it plays on his mind throughout the day, and even when he drifts off to sleep. Only a matter of months ago did Murphy need sedation to have a dressing change, but for a needle tonight, Murphy’s strength showed. As Murphy lay there watching Bluey on TV we let him know it was time to have the needle. With a quivering lip and shaking hands he nodded, knowing it was simply something he just had to do. Nat and I lay at his side while he was afraid, and in his face you could see it.  He counted himself down from five, telling himself ‘it will be ok’, lifting up the leg of his Pyjama pants and saying ok, do it here (pointing to his leg).  The nurse swiftly gave the medication and Murphy let out both a tear and a scream. While the fear faded away, and the scream ceased, Murphy was left there once again angry at this whole situation. Nat and I looked at each other with that same feeling while trying to remain strong for Murphy. This small act of our boy watching that needle go in showed us his determination to beat cancer. For most, cancer isn’t beaten overnight, but it is beaten over time through small moments of God-given bravery such as tonight’s needle.  

This round of treatment has been referred to as the Everest of our treatment plan. The first 5 rounds of chemo allow us to get to base camp, but in the coming 14 weeks Murphy will endure the hardest type of treatment. Other neuroblastoma parents have shared with us that after these dual stem cell transplants, we can expect to have some relief through the radiotherapy phase. Although this doesn’t provide much solace, knowing further treatments still bring their own risks, and we want immediate and complete healing for our boy, hope of any form of ‘relief’ is welcomed!

What is this round?

·      There will be 7 days of chemo, with the current drug being a new one, and tomorrow he begins with a drug he has had before, but a triple dose (that’s why they call it high dose chemo)

·      He needs to bath every 6 hours, to help relieve the skin from burning due to the toxicity of the drugs.

·      17th  of March, Murphy will be given back his own stem cells to help ‘rescue’ him after his body will be too depleted from the high dose chemotherapy.

·      It is a high risk but high reward form of treatment, and we are expecting that Nat and Murphy will need to stay in hospital for most of the 49 day cycle.

·      I had previously shared it was 42 days per high dose chemo round, but this did not count the 7 days beforehand of chemotherapy infusion, which we are currently in.

Big cousin fun!

Prayer points:

·      After multiple audiology tests, it has become apparent that Murphy has lost some of his hearing in both ears. This damage is long term, and last week’s test shows that the loss is too much and therefore will require intervention. Pray that his hearing returns, WE WANT A MIRACLE in this space.

·      Last Friday, during one of the scans, doctors found some blood clots in Murphy’s Lungs. Further scans showed that the clots were not in the legs, but they all centralise around the lungs. Pray for the doctor’s wisdom as they try and balance blood thinning medication throughout these rounds of Chemo.

·      Murphy has lost weight after the surgery, that he has not been able to put back on, please pray that he can put on and retain weight.

·      The effects of these medications are LIMITED to the point that they’re NOT FELT by him! No pain and no sickness in JESUS NAME!

·      Pray that he keeps his Murphy sense of humour, and his love for his family.

·      Pray that his faith can grow over this time. May Murphy lean on and feel God’s comfort.

With much to pray for, I am always mindful to look at what good things God is doing. One of those blessings is that the MIBG scan revealed that the overall cancer throughout Murphy’s body has reduced, and that he is well on track for his treatment. It is now proven that…

ALL CANCER IN MURPHY’S BODY HAS REDUCED. Praise God!

As I wrote at the top, can you please share below a verse, or portion of scripture that God has revealed to you that has helped your prayers for Murphy. Or if God has simply brought a scripture to your mind, can you share that below as I hope to encourage Murphy with telling him of the many people praying for him by name, and reading scripture over him. Psalm 119, verse 105 shares about God’s Word being a lamp to our feet and a light to our path. My prayer is that through God’s Word, it helps encourage and make a way on our way up Everest.

Thank you!

I’ll leave this post with a Gallery of pictures below, in which you will see how incredibly blessed we were to be gifted a weekend away as a family, Murphy and all the kids cherished this time together, before our hospital stay began.

For the below video, you need to be viewing this in a web browser and not via the email update. Click HERE to go to the website.

This was from our fun weekend getaway!

Induction complete!

Hey,

 Firstly, my apologies for there being a three-week gap between posts. Since round 5 of treatment, I have found myself not having a lot of steam at the end of some long workdays to write an update.

I’m finding Murphy’s journey similar to reading a novel, every page turned creates a new possibility for what could be. I am a horrible reader, because I manage to only get a handful of pages read before my eyelids give up at night. But I still enjoy reading because there’s a satisfaction that comes with starting each new chapter, there’s a freshness of scene change and a closure to last chapter’s problems. I would be lying if I said I wasn’t scared about the next phase of treatment. The daunting nature of this next phase will be horrific, and I’ll share more about that later. Entering the next phase, it means we have finished the last chapter of treatment, praise God! As I write, Murphy has successfully completed five rounds of chemotherapy and done so with a smile and a joyful spirit. According to the national protocol for treating stage 4 neuroblastoma…

Murphy has completed the induction phase!

Looking back…

For Murphy, we have seen God’s goodness come through for round 5 of chemotherapy. This is not to say he hasn’t been sick and has not had a great deal of suffering, but as we read through the opening chapters of Job in the Bible, through great suffering and trials it is still possible to praise God. If you recall, round 3 and round 5 were the same drugs, and Murphy’s reaction to round 3 was very difficult because his body was in a neutropenic state for close to 4 weeks, as well as Murphy suffering from nausea for nearly a month. We are 3 weeks on from round 5, and Murphy’s body has recovered extremely well. This week Murphy’s blood results show that his body has produced new neutrophils at a rate that we would have dreamed of after round 3.

Looking ahead… (But not looking forward to)

Within the next few days Murphy will have some tests to check on how the overall cancer cells are tracking. The MIBG test is a test that is specific to Neuroblastoma that will highlight the microscopic disease right throughout Murphy’s body and bone marrow, the disease that is not visible through a CT scan. This will be what doctors call a ‘prognostic’ scan, as it will measure the effectiveness of 5 rounds of chemo by comparing the scans to the diagnostic MIBG. Please pray that this test will reveal how powerful God’s healing hand has been, and let it reveal a drastic reduction in the overall cancer levels.

Late next week Murphy (and Nat) go in for what will be their longest single hospital stint. We have been informed that we need to prepare for up to 42 days/nights in hospital. This round will see Murphy have the highest possible chemotherapy. After this high dose chemotherapy, Murphy’s body will go into ‘shut-down’ mode. Murphy would have had so much chemotherapy by this point that his body cannot recover on its own. This is when the Stem cell transplant will begin. Murphy will need to be rescued with his own stem cells through a transplant to recover. (See earlier blog posts about the harvesting of these cells). This procedure that you prayed for months ago only NOW comes into play. These stem cells that were harvested in October, will be given to him to potentially save his life, because his own stores of bone marrow will be severely depleted. The doctors have run through all the side effects of next week’s procedures, and it is heartbreaking knowing how sick he will be. The most devastating reality is that once Murphy recovers from this harvesting process, he will then need to do the entire high dose chemotherapy process again. He has a huge 12 weeks ahead.

Please pray for:

His strength.

His character.

His hope.

His spirit.

When you pray, can you pray and visualise God wrapping His arms around our boy. Let God’s comfort be the warmth that floods through Murphy’s aching bones.

Nat and I have had some long conversations of late around the concept of suffering, and they have not been the easiest conversations to have because we know the suffering that has been, and that there is more to come. Nat and I don’t want Murphy to suffer, we want this cancer gone. We know though that God has gifted us one very special boy who has a tremendous amount of determination, fight, resilience and will power. All of this is because God has gifted us you, our prayer warriors. You’re the army that fights when Murphy, and us, are weak.

Finally, I need to share this picture that God gave me the other day. Last week I found myself overcome with sadness picturing Murphy’s hospital file/case notes. A silly thing to think about, I know, but this mundane manila folder of his contains every file detailing every doctor note, reports from tests, information about Murphy and much more. I was left thinking about how this folder is growing rapidly, and the clip they use to bind it together just keeps getting bigger because it needs to now hold hundreds of pieces of paper. But, in this moment of sadness God showed me the concept of perspective. God said that this folder contains God’s fingerprint of healing. In each of those pages there’s evidence of God turning this out for good. Where instead of seeing them as evidence of suffering and pain, I was encouraged to see them as a fingerprint of God’s mighty hand.

A new school year

Hey,

For us in Australia our school year begins in January and ends in December, therefore this past week has seen all schools start the 2023 school year. Therefore, it has been a big two weeks in the Nowak household! With new schools, their third in three years, for Cali, Hugo and Ted, a new job for myself and recovery from Surgery for Murphy. It has been pleasing to see each of them demonstrate courage whilst still having such love and care for Murphy.

See below pictures of the kids first day of school, and at the end of this post you’ll find a video of Murphy’s dance moves post-surgery!

As a family, it is part of our routine to pray together each night before bed, Murphy prayed a prayer last Sunday night that just broke Nat and I. As we sat around before bedtime and talked about the week ahead, with Calista, Hugo and Ted starting a new school, the siblings asked Murphy to pray first. His prayer was simply this, “Dear Yord (Murphy has trouble pronouncing his L sounds), I pray for my new school, let me make friends, and let them not see that I’m sick, because I’m not sick. Amen.”

Out of the mouths of babes. Murphy doesn’t see himself as sick.

 Murphy sees himself like you and I. Sure enough, he has a few extra external features that you and I don’t exhibit, such as a central line, and a Nasal Gastric Tube, but his mind and character show us that he sees himself like any other four-year-old boy. (Insert tears here last Sunday night!) Therefore, on the back of that prayer, Nat jumped into action and engaged like the caring and loving mother she is! After a couple of days and numerous phone calls later, Nat had Murphy enrolled at the local kindergarten! This was in consultation with the oncology team at the hospital because it is unprecedented that a patient like Murphy would dare to consider going to Kindy like a regular kid. The doctors were pleased with Murphy’s blood work and couldn’t see there to be too many risks involved, therefore by Wednesday this week Murphy was able to have a visit to the kindy and meet his teachers! Once again, we have been shocked by the resilience and determination of Murphy! The Kindy has been incredibly welcoming and have allowed Murphy to come and go as much or as little as he is able. This has built our faith, because we have had the privilege of still having some normalcy amidst journey that Murphy is on and sending him to kindergarten like a normal four-year-old, is preparing him for schooling, in faith and declaration for the full life he will have after this year of treatment.

 A report on post-surgery recovery:

 “Remarkable and unprecedented” – the words of the Head Surgeon. We are incredibly thankful but not surprised. Your prayers for Murphy have seen him return home from surgery so quickly that is has surprised many nurses and doctors! The procedure Murphy underwent was major (the scar is there to prove it) but this would not deter our young man from being active! According to doctors, Murphy should have been ‘weight bearing’ by day 4, and walking day 7. The ICU was booked for 5 days post-surgery, and they anticipated him being in hospital for 2 weeks minimum. However, Murphy, along with God’s help, had different plans. On day 2 post-surgery he asked Nat to stand up, and on day 4, he and his sister had a dance party (which only lasted 2 songs, but it filled the room with joy and a spirit of overcoming!). By day 6, post major surgery, Murphy was discharged and allowed to go home.

I have said to many people of late that God is working on the major miracle of the complete eradication of Murphy’s cancer, but He cares so much about the little things along the way. Murphy returning home to his loving family 6 days after surgery is one of those “little things” that become one of those miracles along the way.

Nat and I have had a lot of friends and family reach out to us expressing their love of Murphy and their fervent prayer. We are so humbled and blessed by the many testimonies we hear of people all around the world of who are praying at any time of the day for our Murphy. The nice reality is that when our overseas prayer warriors are storming heaven during their daylight hours, it brings a peace over our long evening hours. For those prayer warriors, we call them our night watchmen. Thank you. And to our Australian friends and family, we thank you for standing with us in prayer in the daytime hours.

Treatment ahead:

 This week Murphy has several appointments on Tuesday, to prepare him for round 5 of chemotherapy on Wednesday. This will be the conclusion of the first phase of treatment. Personally, I am nervous about how sick this round of chemo will make Murphy. The combination of drugs he will be administered are the same as what he had in round 3, which if you remember was a hard cycle for him to endure. Please pray that supernaturally Murphy remains strong through this cycle, and that his body responds better (while still killing all that cancer) than it did last time, in the conclusion of this Induction phase. Please pray specifically for this.

Last week during church, one of the team shared this Bible verse; James 1: 12. As a family, we sat around and read through the whole chapter after the service, and we realised that we could go through many trials with the help of God! That conversation sustained us all this week, with each of our respective ‘tests’. May this verse encourage you, as no doubt you too are going through or have been in moments of trial and tests. Our God is a God who sees us, knows us, cares about us, weeps with us, loves us, and ultimately rewards us for our perseverance through these challenges.

James 1:12 - Blessed is the one who perseveres under trial because, having stood the test, that person will receive the crown of life that the Lord has promised to those who love him.

Below is a video of Murphy only a few days post-surgery. To see it, you’ll need to be on the blog website, click HERE to see it.

Our little champion

Hey,

 I’m writing this blog post from the hospital room, sitting next to Murphy, who has done a remarkable job recovering from a major operation. I want to update you on how good God has been this week, from preparation, through to recovery, His hand has been over it all! Thank you for your mighty faith and prayer for both Murphy, and the rest of the family. If you click HERE, you can go to the website page of the blog, where you will be able to see a video of Murphy thanking you all only hours after his operation!

 In the last blog post (Click HERE to read), I explained what the week entailed, and today I want to give you a pleasing report on what great success Murphy has had. On Wednesday night, in preparing for surgery on Thursday, the whole family felt some nerves, thinking about Murphy in such a large cold room with many surgical team members opening him up and removing the primary tumour. Before bedtime Wednesday, as like most other nights, we gathered before bed to pray. Nat encouraged Murphy to hold his hands out to receive from God, and he responded immediately with arms fully stretched out in faith! Check it out…

Your prayers for peace and comfort were felt in our home, with the whole house having the best sleep we’ve had in weeks, which goes against what we ‘should’ have encountered the night before a major opperation!

Thursday rolled around and we set off for hospital, where Murphy had some idea of what to expect, but his wonderful childlike faith and approach to life caused him to RUN into hospital!

A few hours of waiting followed the early arrival time into the admissions unit, and then Murphy’s name was called. Nat and I held onto each others hands tightly, and we walked Murphy to the surgical unit. Through all of this, Murphy put a brave face on, but as parents, we knew there was a nervousness underneath. In the pre-op room Murphy put on his gown and walked with Nat into the operating room. A sterile, white,  cold and populated room. Murphy looked into his mummy’s eyes and said to Nat, “My scared”. Like any comforting mother, Nat pulled on all her strength to assure him, “It’s ok”. Meanwhile I was waiting for Nat’s return in the pre-op room, where another mum walked back into after she had released her son to the surgical team. This mother fell apart in the room and needed the comfort of the nursing staff. Back in Murphy’s operating room, Murphy jumped up on the operating table, lay down, and away the team went and put him to sleep. Nat walked back out to the waiting room, and we held each other tight and knew in our hearts Murphy was going to be ok.

Only a few hours later, one of the doctors called to say that they had completed what they needed too, and were in the process of putting him back together to close up! This phone call was only 3 hours into a surgery that could have taken up to 10 hours if there were complications. Now, here is the good news; there were no complications at all, and in fact, the doctor was shocked at how well it went! When the head surgeon said to the anaesthetist that it was time to close, the anaesthetist responded to him, “What, so soon.” Thank You Lord that everything went even better than what was expected.

Murphy was shortly thereafter returned to the Intensive Care Unit, and Nat and I could see him. It was a beautiful sight, our boy, lying there, minus the insidious large tumour taking over his body! He was heavily medicated and peacefully sleeping, as his body recovered from the trauma to the body of a huge incision and invasive surgery.

The surgeon spoke to us immediately after with a smile on his face saying he was able to remove the WHOLE tumour and two lymph nodes that also had suspected active cancer cells. A success, in his words! This is great news because it means the entire tumour can now be analysed to determine how best to proceed with the remainder of his treatment. Praise God! In terms of what Murphy has faced so far, this is a HUGE win in his Cancer Journey.

In the past day, post operation, Murphy has shown radical strength and determination, progressing through the healing process in great fashion! Check these wins out:

1.     He was transferred out of intensive care in less than 24 hours, whereas the doctors anticipated he might stay in ICU from 5-7 days!

2.     Murphy has completed some lung exercises in the first day! Most patients take 7 days to complete these exercises!

3.     Murphy’s body is processing fluid quickly, and he has shown early signs of improvements for his bowels. (Passing wind is a success, and he has made a ‘fart dance’)

4.     Murphy’s appetite is growing, and he’s desperate to drink water. The doctors have yet to allow him to eat, to which Murphy strongly disagrees with them, haha!

Thank you for your prayers and support! If you want to keep up to date, make sure you subscribe below, and this will send you an email notification once every blog post is written and published.

The power of Prayer has been so evident in the outcome of this week’s surgery. Thank you. May your faith be encouraged.

Go Murphy!

Love the Nowaks x