DFMO at PCH

 

Nate thought today was good for "bring your BFF to clinic day". I signed all the consents and Nate is now transferred to the DFMO trial at our home hospital, PCH. There will only be 7 kids enrolled in the study at this location, so we are very happy to have one of those spots for Nate. He continues to do very well on the DFMO and is experiencing no side effects. No clinic or tests for a whole month! We are so thankful to be at this point! September is Childhood Cancer Awareness Month and we are gearing up to help spread awareness all around. Go GOLD in September for the kids!



We Love Nurses

 

Nate and I visited a sweet boy at the hospital today who was recently diagnosed with neuroblastoma. Please keep little Jonah and his family in your prayers. I hate that they are part of this world now. On our way out we were so excited to see one of Nate's best buddies. He helped us get through some of the darkest days of treatment. He had a bear named Softie as a kid too and used to "fly" around Nate's room in his cape to make Nate laugh. We have been so blessed to have so many amazing people caring for Nate over the last couple years.



The Bus

 

Nate had a great first day! He got off the bus with a giant smile on his face to a little fanfare...paparazzi Mommy, Grandma, Wes and Ellie all excited to see Nate! He won't give me nearly the amount of information I'd like to get about his day but he's excited to go back tomorrow.

1st Day of Pre-K

 

I put on a brave face, then cried like a baby after drop off! I'm so happy Nate gets to have this experience. He gets to go to school! He's so excited to go to Wesley's old preschool that he's been asking to go to since he could talk. Then ...after lunch he will get on a bus and go to the district preschool where he can get speech therapy and a hearing teacher. He is REALLY excited about the bus. It's hard for Mommy to let go of my little buddy for such a long day after I've spent so much time not leaving his side over the last couple years. I know he'll do great, though, and I'm so grateful that he has these opportunities.



Little Stinker

While picking up some things at the store for Daddy, Nate escaped from me. He ran full speed through the men's department, weaving in and out of racks giggling his head off and yelling "Yahoo!". I tried hard to put my stern, "we don't run in stores" face on but I don't think I was too successful. It was hard not to get caught up in his sheer joy when there was so many days I would have given anything to see him run and laugh like that. I know it's a privilege and I am so grateful. I love my little stinker!



Cavities

I'm waiting for Nate to get his 4 cavities filled. Hoping it goes smoothly and he comes out feeling ok and in a decent mood. These expensive and painful treatment side effects are no fun! Always counting our blessings, though. We are grateful that 4 cavities is the only dental damage, so far. We know it could be much, much worse. We are grateful we have been able to save some of Nate's medical fund for these late effects that are not covered by insurance. Most of all, we are grateful to have our sweet boy with us and know that dental work is a small price to pay.

Goodbye Rady

 

Nate just had his last appointment at Rady Children's. Our home hospital, Phoenix Children's, now has the DFMO trial open and he will be switching over at the end of the month. We are so grateful that the trial opened at Rady at the exact right time for Nate to enroll in the study and are beyond grateful that he remains NED and can continue on the DFMO.