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.