Summer is ending, school is back in session and a new rhythm of life is about to begin. If you haven’t read our last blog, click HERE, you’ll find a heap of summer highlight pics at the bottom and get to see the many visitors that have been through the Nowak home! There have been so many highlights through summer, and it has been a complete joy watching all our children settle into life here in Charlotte. I thought I would update you on a few things that have happened of late and give updates regarding the progress of Murphy’s treatment.
But first, may I give thanks… Reading Psalm 118 verse 1 last week struck me big time.
‘Give thanks to the Lord, for he is good; his love endures forever.’
God is good, all the time, and His love is forever. As Murphy has begun Kindergarten (Reception, for us South Australians) here in North Carolina, I can’t help but give thanks to God! You’ll love these pictures of him at school and the American school buses!! I have been thanking God daily for Murphys amazing progress and start to school, I have been thanking Him for the hundreds of people who have supported our family through this entire journey. With your faithful, prayerful and financial support, our family has been cared for in the most beautiful way. We have afforded the means to get over here, establish a home here, give our children some joy-filled and life-giving experiences this summer, all the while helping ‘pay the bills’ while Nat has not needed to jump into work straight away and therefore, she has been able to organize our family and love our children as best she can. Thank you to every single person who has prayed for and supported our family.
To wrap up the summer break, a wave of sickness went through the family, with coughs, colds, strep, croup and more, it’s safe to say that has all cleared and we started the school year fresh and ready (maybe not 100% ready, but as ready as we’ll ever be)… Murphy was due to start school Thursday 2 weeks ago, but Nat and I were woken up by Ted who ran into our room at 1:30am exclaiming Murphy was coughing. In our dazed ‘you woke me up’ state we stumbled into his room to find Murphy in a genuine panic and struggling to breathe. If you’ve ever had a child with croup, you’ll know the sound of the “bark cough” that Murphy was letting out which accompanied his panic. It didn’t take too long for Nat and I to make the call that he needed to be taken to the hospital. After a 911 call, 3 minutes later the fire engine was on our doorstep and four men way overdressed piled out, one holding a stethoscope. Not knowing this is common practice in the USA, I turned to Nat and gave a puzzled look as I asked, “babe, did you order a fire truck instead of an ambulance?!?!” Little did we know they’re often quicker than ambulances here and are all well-trained medics! Fast forward a little, the Paramedics came and took our boy to the hospital where they gave him some oxygen and steroids and sent him home just after 5am. This led to a tired boy who was in no shape for his first day of school, causing him to begin school Monday last week.
The first full week of school!
Thoughts in my head daily: “Wow! Praise God! I can’t believe it! How is this possible!? What the?! Look at him! He’s so full of energy and life!”
I have been speechless over the past week, because I simply cannot believe how well Murphy has adjusted to school. He has been placed in the most nurturing and caring class, with sensational support staff around him and teachers that just go the extra mile to care for him. His energy levels have been so high, with no aches, pains or complaints! Every day he had gotten off the bus with new stories to share and friends he wants to talk about. Praise God is all I can say! He is a living, walking, and learning miracle school boy!
Murphy is nearing 6 months of treatment here in the USA, and I thought I would share some points with you, for you to see what the clinical trial has involved so far for Murphy and as a little update for those that are new.
DFMO is a stage 2 trial medication which is designed to combat the relapse rate of high-risk neuroblastoma.
Children who fight through 18 months of grueling treatment have an 85% of relapse, and a significantly low chance of survival post-relapse.
It is an oral chemotherapy medication, beginning with the highest dose (16 tablets a day), Murphy’s red cells declined, which pushed the team to dose-adjust and reduce to 12.
The pills are crushed morning and night, and we administer through his G-Tube.
2 Months ago, the team of oncologists suggested Murphy undergo surgery to remove his NG tube and replace it with a G-tube, which has helped him integrate into school, and be more active.
The main symptoms of the trail drug DFMO have been upset stomach, frequent vomiting, irritable bowel and reduced eating, high sensitivity to smells, loss of eyebrows and lashes, thinning and color change of his hair! Between months 3-5 these have stabilized, and at present, Murphy has very few symptoms!
It is a 2-year trial, with a series of PET scans, kidney tests, audiology exams and monthly check-ups.
His care is based out of Levine Children’s Hospital, and it has been nothing but world-class for our boy!
The DFMO trial has since closed to new patients, after Murphy had started it, which means even though they have stopped taking new patients, they will see out the treatment of all current patients. Praise God Murphy started when he did, and we get to be a part of the research and body of knowledge regarding high-risk neuroblastoma. It is such a privilege.
Fun fact - Murphy tried his first Chicken burger a couple months ago (chicken sandwich for the American’s), and he liked it. Now every time he orders at Chick-fil-a he is torn whether to go for the nuggets or burger! Haha! Chick-fil-a remains his favorite treat after a long day at the hospital and has got him through many a blood draw.
Please pray for Murphy’s next PET scan in a couple of weeks, 6th September, that it comes back clear and disease free! These days never get any easier as a parent in the natural sense but thank goodness we believe in a supernatural God.
Much love,
Daniel
