“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.
