Our boy has his spunk back! Murphy has shown off his funny, cute, quirky, and fun attitude over the past week, and it has been a true delight to observe. For me to explain why, I need to go back a couple of weeks. I will share some things that our family has been up to.
Let’s start with a few weeks ago, Calista’s birthday. A joyous time for our family, celebrating Cali’s 13th birthday in true Nowak style, with festivities happening all weekend long! Nat’s mum was in town so the three generations of mighty women, Glenda, Nat, and Calista went to the Charlotte Ballet’s Swan Lake on a Friday evening. This was followed by a big celebration breakfast that Cali’s brothers ‘helped’ with (I must say I did 99% of it)! Dinner was the focus of the day though, where we booked at a family-owned Italian restaurant south of Charlotte. Nat’s parents joined us, so we piled into the car and went southbound. There were no early sittings, so we took a late sitting and were swift in ordering our meals. Smiles were had and stories were being shared of our favorite qualities of Calista around the dinner table (a family birthday tradition). A short while later the appetizers came out, Brussel sprouts, now I know you might not be a fan of these green gems, but Nat and I love these little crispy salty sprouts, The waiter put them on the table, and it wasn’t before long Murphy smelt them and began vomiting. Murphy was in the bathroom and finished up in there before returning to the table. It was only a few minutes later he went again. At this time, we cancelled the sit-down meal and asked for the food to be packed up to take-away. A quiet 30-minute ride home for the whole family, as we were all a little sad for calista’s birthday meal, and Murphy’s sickness. What I am so proud of with my family is that we all bound together and turned it around. Murphy went straight to bed as he was exhausted by this point and overcome with embarrassment and deep sadness for ‘ruining his sister’s birthday’ (his words). Calista walked up to Murphy’s bedroom and tucked him in, and as I lingered in the hallway, I could hear her comfort her brother with some sweet words, “it’s ok Murphy, you didn’t ruin my birthday dinner at all. Have a good sleep and I’ll see you in the morning.” Calista then joined us at the dinner table, where Nat got out the candles and made the ‘to-go’ food look that little bit fancy. All-in-all, a beautiful birthday meal ending.
It's these moments, a quick dinner pivot, where cancer still kicks you in the gut. But it’s these moments where our family shines bright and creates memorable experiences out of unfortunate situations. Hugo, Teddy and Calista have pivoted so well with the many moments like this one over the past 2 years, it brings Nat and I to tears sometimes thinking how incredibly all four kids have the most thankful hearts and have just learned to make lemonade out of lemons sometimes.
A week later, Nat’s parents left to go back to Australia and Nat and I found ourself out for dinner with another couple from church. We were driving home and FIVE MINUTES before we get home, a text comes through from the babysitter. “Murphy’s vomiting.” We call back instantly but no answer, so we drive a little faster (don’t tell anyone) to see to what extent he’s sick. As we pull into the driveway all the lights are on and all the kids are awake which is not a good sign. We walk into the room to find Murphy’s been sick all over the bed, and his NG tube came out. After giving the babysitter, a ‘vomit tip’ for her services, Nat and clean everything up and create calm back in the home. The following day we head into the hospital to get his NG replaced. It was at this appointment though where Nat felt to ask for some bloods being done, as Murphy’s color was a little off. The results came back quickly and confirmed Murphy’s red cell count had dropped dramatically in the last week even though it had been on a steady decline since we started DFMO in Feb. The medical team booked in for a blood transfusion on Thursday. After what was an upsetting night for Murphy in bed, turned out to be a catalyst for Nat asking for some bloods. And that Thursday bag of blood gave him back a lot of energy and some warm pink color in his skin!
I know I’ve shared two sad(ish) vomit stories, sorry if you don’t like vomit, but still Murphy has overall been well. Honestly, he has been full of that opening word, SPUNK. He laughs, runs, giggles, and plays pranks all day long! This week Murphy went in for a check-up a week after those bloods, and he is doing great! All numbers are up, and his red cell count is healthy. The implication though of that blood transfusion is that protocol stipulates that Murphy must dose reduce his level of DFMO medication to 12 tablets a day instead of 16 and he has also had to have a 10-day break from the Clinical Trial to recover from the transfusion. Can you please pray with us that this reduced dose will help his red cell count to hold now and that he won’t need more transfusions. One of our faithful friends, said this was not a setback for Murphy, just a way that God has customized the perfect DFMO dose for him.
Some other fun moments in the past few weeks have been:
- End of school for Teddy, Hugo and Calista, now 12 weeks off!
- Visitors up from Atlanta, so that Hugo could go to a concert with his friend Josiah!
- Library visits.
- Birthday parties.
- Dinners with neighbors.
- Pool, pool, pool in the neighborhood.
- A weekend at the beach.
Coming into this week, we would love you to partner with us in praying for a couple of things. Firstly, the medical team has proposed a G tube, instead of an NG tube for Murphy. The advantage of this will be that tablet access be straight into his stomach, for medications, rather than through the nose meaning he will have a free smiling face for the first time in nearly two years. This conversation started a few weeks ago when we noticed Murphy’s skin to break down because of having NG tape on it for months on end. We meet the surgical team this week to discuss this option and book in for the procedure. Secondly, and more importantly, Murphy has his first check-up scan since remission. This PET scan is a little frightening for Nat and I, to be honest, but I am reminded that our faith says not to fear! Pray for a clear result! The PET scan is Wednesday June 5th. We can’t wait to share that murphy will still be cancer free after this scan.
Thank you for your wonderful support!
Daniel
