6 Month Post-Treatment Scans

It’s been a while since I last updated, so thought I would share some good news and give an update.

Nolan had his brain MRI last week, and I’m HAPPY to report awesome results once again! His images are showing stable results with no changes or evidence of tumor recurrence.  Praise the Lord for these results and many answered prayers! 🙌 We are filled with JOY and have so much to be thankful for. What a relief for all of us.

These last few months have been a breath of fresh air for our family. Nolan is getting stronger and healthier every day, and we’ve been enjoying the normalcy and blessings of this season of life that we are in. With our oldest son’s senior year upon us, we are enjoying this special time together following his hockey games/activities and preparing for his next chapter of life. We have also been able to participate and watch our daughter’s dance team/activities and be there for her during her junior year.  Life has been busy, but we are taking it all in and enjoying this time.     

Nolan is also back into the swing of things with daily routines and challenges of 5th grade.  He’s keeping up with school, weekly appointments for physical therapy and speech, and he loves being in sports (currently hockey) again.  It’s been great exercise for him, fun, and it keeps him off his video games!!  Double bonus. 😉 We are also trying not to do everything for him now days and get him back on track with 11-year-old responsibilities.  We’ve had to help him for such a long time with day-to-day tasks, that it can be challenging to tell him, “No, you can do this on your own now – You can do it Nolan!”  Not his favorite thing, but we like to get him going.

Going forward, he still has many challenges to work through. His mouth opening is still very restricted, so he will continue physical therapy, Botox injections, and daily exercises to hopefully improve that over time and keep the pain away.  We are also meeting with Mayo this week (Dental specialist and Otorhinolaryngology department) to get their input on his current condition and what next with his lock jaw/mouth restrictions and issues around that. 

We are also keeping in touch with his Nephrologists regarding his Kidney functions. Thankfully his abnormal labs have been improving in that area, but he continues to have blood in his urine with some pain. It sounds like that will clear-up over time though, which can also be a side effect from the chemo. 

We are also meeting with his Endocrinologist regarding his next steps for growth hormone treatments.  His current height is 4’7” and we were told he won’t grow much more than that without treatments (another side effect of radiation.) ☹ They have a certain time frame to start this process to get the best outcome, but we also run into the fact that hormone therapy can also cause tumors to grow, which is not what we want either!!  Typically, they wait 3-4 years after chemo to start this process (per his oncologist), but we were told he should start around June timeframe.  Praying it all works out with perfect timing and he can grow, grow, grow in height, but NOT in tumors. 🙏 

He still has many obstacles to overcome, but we are so thankful for the point we are at and celebrating his latest results. His next MRI will be in May and praying all will stay stable there, and he’ll have a lot healthier, fun-filled days ahead.

Thank you again for all the prayers and support. We are surrounded by amazing family, friends, and community.

Much love,
The Milton’s    

Chronicles 16:34 “Oh, give thanks to the Lord, for He is good! His mercy endures forever.”