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
