Nolan’s Story

Site created on February 28, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Kelly O’Hearn

Hey Nolan's Army - It's hard to think that it has been a year since Nolan finished treatment!! Everyone says there is life after treatment and man is that true. Nolan is currently doing very well :) He is so smart and we can't believe he will turn five in just a few months. I know it's a scary world out there right now with this virus but being quarantined has definitely had its benefits for Nolan. A few examples: Having Owen home 24/7 has made Nolan continue to thrive and pushed him to keep up with his big brother. Also, Nolan has been healthy (knock on wood) the past 3 months and it's nice for once that Dan and I do not have to worry so much about him getting sick from going out or Owen bringing it home from school. Quarantine life for Nolan has been normal for the last 2.5 years so it's business as usual for him. Nolan loves his lake house; with so much time at home he is getting a lot more confident in the water and loves swimming. Dan has been working from home since March (we are very lucky) so with all of us being at home it reduces Nolan's exposure! As many of you know he had his MRI last week and the results, once again, showed STABLE!!!! What a miracle this kid was given and we cannot thank God enough. As a crazy nurse Mom I always read the scans and even though we couldn't ask for better results at this time; it throws me back when I read the words "stable large brain mass;" … I cry for a minute but then I think about what we were told at the beginning: That our son wouldn't even be here now to receive a scan and how blessed we truly are even with a "stable large brain mass." We also had a follow up with his team after his appointment last week. They are very pleased with the results! However, Nolan still hasn't been walking independently. He is definitely getting stronger everyday but his balance is still off. The doctors now believe after a year out of chemo that losing his ability to walk was caused by the biopsy. As we all know there are risks involved with any procedure and Nolan is the 1% still having symptoms from it (biopsy). The biopsy was a major factor in savings Nolan's life or he would have went into aggressive radiation therapy, unnecessarily, with tremendous negative effects. We still hope he walks independently some day & we will continue all the therapies even though it changes nothing about Nolan's incredible character & personality. Nolan was sick a lot over the fall and now with the virus he hasn't been able to do his physical therapy like we would want, but he is starting back up next Tuesday and we are hoping this continues to help him. his Optamoligest is monitoring his vision/muscle of his weak eye and that will possible need surgery down the road but we are still watching it. The doctors also talked about possibly starting another treatment (oral chemo) to reduce some symptoms but at the same time we don't want to mess with a good thing so we will hold off. I still pray every night that they come up with a miracle drug to dissolve this thing but he will be ok regardless, he is an O'Hearn!! Next scan is scheduled for September. Nolan is now aloud to be fully vaccinated so as soon as we get the all clear from the pediatricians office we will be in for those. Nolan was able to see all his O'Hearn cousins last week (fist time all together since Christmas!) We all loved it!! Nolan was very sick in Dec/Jan with RSV, which resulted in an 8 day hospital stay, being admitted to the ICU, and ending in a new onset of what they thought was nocturnal seizures. I never realized how wicked this virus can be. Our next goal is to get him out of our bed since he has been sleeping with me for six months now because I am nervous about the possible seizures. We are in the process of getting a seizure monitor and hopefully will get him back in his bed before too long, but I think I might have a harder time than him transitioning. We hope all of you are staying healthy and safe. Please keep praying for our boy as he continues to conquer other obstacles. #Nolansarmy #PrayforNoles #Ohearnstrong #Godisgreat
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