Hello Wolfpack!

Where did the last 4 months go!  I can’t believe that we are approaching May already.

MEDICAL

As mentioned in my last update, Reilly had his last lumbar puncture on January 11th.  We are so happy to have reached this treatment milestone getting us one step closer to being done with chemo.  Reilly also had his second to last Vincristine IV chemo on April 4th, so he only has one more IV chemo left for treatment which should happen at the end of June, it is likely that he will be scheduled for his port removal around that same time. 

Reilly continues to take his daily chemo meds and will do so until his end of treatment date on August 8th.  We are now 110 days away from his last day of chemo.  Although we know our cancer journey doesn't end with the end of chemo, we are looking forward to this HUGE milestone.  

January and February were fairly uneventful and Reilly was in good health and was able to consistently attend school and all his other activities.  In March, his doctor increased his daily chemo dose by about 20% because his counts had stabilized.  However, mid-March Reilly came down with the flu (influenza B).  That flu really took a toll and left lingering congestion and a cough.  It also required two emergency trips to Primary for fever protocol and IV antibiotics.  He had not significantly recovered from the flu by early April, so in a second respiratory panel it was determined that he had also picked up parainfluenza 3 and rhinovirus (head cold).  It ended up taking about 4 weeks for him to get over the flu and viruses (and lots of missed school ☹).  We ended up at Primary for fever protocol, follow ups, and clinic appointments about 6 times in the course of 4 weeks.  Due to all these viruses, his counts took a hit and was dropping his hemoglobin and ANC consistently over the last 4 weeks, but so far we have avoided the need for a transfusion.

This last week Reilly was able to return to school and made it a whole week!  He’s still not 100% as his system is weakened and he’s looking paler than usual, but overall he managed to make it through the week.  Hopefully he will continue to be on the mend and get stronger and back to feeling good in the coming weeks. 

FUN

The night of Reilly’s final lumbar puncture on January 11th we attended a home basketball game for our Utes, they had a special surprise that night where the team had made a special video for Reilly and we got to watch it from the court and then the whole arena cheered for Reilly and let him know how loved and supported he is by the U of U community. 

On January 20th, Reilly attended Millie’s Princess Foundation’s Royal Ball at the aquarium and had the best time.  He enjoyed seeing his friend Adalynn and they had a blast at the dance party to finish the night off.  It was such a wonderful and fun night for all of us. 

At the home game on Feb. 3rd, Reilly was able to participate in a signing event after the game with the team.  He loves signing autographs for his fans!

In March, we made a special car trip to Vegas to see our Utes play in the Pac-12 basketball tournament.  Reilly loved Vegas, especially all the arcades, candy stores, and Virtual Reality experiences.  Our Utes won their first game and Reilly got to celebrate with the team by adding their name to the bracket for the next day and a locker room celebration.  We were so excited to cheer the team on twice while we were there. At the second game, after meeting Reilly the night before, the manager of security upgraded us to courtside seats!  What an experience!    One of Reilly’s favorite experiences while we were there was the Michael Jackson show “One” at Mandalay Bay, where we had front row seats and felt like we were in the show. 

Mixed in with all of the above is practicing bike riding skills, attending basketball games, attending birthday parties, bowling, park visits, swim lessons (and being a Star Student of the Month), a class field trip to the planetarium, presenting about Make A Wish to his class Girl Scout troop, filing a Make-A-Wish commercial for GetOutPass, Grandparents Day performance at school (where his class sang Love Me Do), meeting Broadway singer Jessica Vosk who played Elphaba in Wicked on Broadway (she made a special stop a Primary while we were there for an appointment), fun at the farm seeing all the baby animals with our good friend Laura, Utah Forever 22 spring football game, a Park City getaway with friends for Easter, and a penguin experience at the aquarium (a Christmas gift from Santa).  I’m not sure how we fit all that in given we were down and out for about 4 weeks!

We continue to appreciate all the love, care and support from our Wolfpack as we press forward in this marathon of a treatment journey.  We are so grateful for each and every one of you and know that your continued prayers have helped Reilly progress as well as he has through his treatment. 

Sending you all much love!