1 Year

1 Year ago, we shared with all of you that our world had flipped upside down. Not only flipped but exploded.  In a matter of hours, we went from healthy baby boy to our optometrist telling us she sees a mass, to her personally calling our Ophthalmologist for a consultation a couple hours later.  Those few hours that we waited for the appointment we didn’t tell anyone because we didn’t know for sure.  We googled everything about Retinoblastoma, and we were terrified.  Those few hours felt like days and when we got to the appointment, suddenly everything was moving a lightspeed. We went from zero to 25 doctors and nurses in a matter of minutes.  Eye doctors, nurses, oncologist, family therapist, the works.  It was right then we realized how serious this was and how quickly they needed to get moving.

Veronica and I are eternally grateful for all the doctors and nurses at Children’s hospital and UCHealth. The pace at which they moved, and the efficiency of their operation was and is amazing.  Within three days of the original diagnosis, AJ had an MRI and EUA (exam under anesthesia) and then was scheduled for his first Chemotherapy treatment (IAC- intra arterial chemotherapy).  While it was extremely over-whelming and scary watching them move so fast, it was also in a way comforting.  Because we knew that they knew what they were doing.  Our oncologist and ophthalmologist were so confident in their recommendations that it was an easy decision for the treatment plan. 

AJs treatment plan was 2-3 IAC (intra-arterial chemotherapy) treatments and then followed up by laser therapy to kill the rest of the tumor.  The IAC treatment is extremely new in the medical world for retinoblastoma.  We did question it very briefly when we were told about how new it is and what it is.  But that is where the confidence of our oncology team came in.  Dr Luna-Fineman immediately told us how successful it is and reassured us that this was her best recommendation.  The treatment is carried out by a Neurosurgeon who specializes in this exact procedure.  The surgeon runs a catheter from the groin, up through the femoral artery, all the way into the brain and branched off into the main artery to the eye, from there the surgeon enters the back of the eye and directly shoots the chemo at the eye.  Aj only ended up needing two IAC treatments (partly due to the blood clot he developed after the second round) but the chemo did the job of shrinking the tumor.  Yes, absolutely terrifying, but this also meant that Aj would get far less exposure of chemo throughout the body.  It meant that when we went home, we truly went home.  No ports no weeks of him being sick, and very minimal hair loss. Once it was shrunk, Dr. Oliver went in and killed the rest with laser therapy and did this treatment two more times to make sure that every cell was dead (dead as hell).   They did an amazing job and made sure that we were with him every moment that he wasn’t in an operating room.  Both of us got to be with him at all times and that made all the difference.  We did it all together every single appointment, treatment, blood draw, scan, everything we did it together. We are extremely fortunate to have been able to do that, we know that there are so many families that are not afforded that luxury. 

Fast forward a couple months and in April, Aj was officially moved into remission!  And his EUAs were moved to every 12 weeks instead of every 6 weeks before.  At his last one in July, they said no re-growths and still in remission.  And now we are in November at the 1-year mark, Aj had his 1-year follow up with oncology and his 1-year MRI on November 10^th.  We are extremely proud to say the MRI went great!  Aj is still looking amazing and has minimal scaring inside of the eye.  And Dr Luna-Fineman said we are officially done with oncology.  Aj still has to have EUAs every 3-4 months to monitor the eye.  He will be on that schedule for the next few years or until he is able to sit through a thorough eye exam without moving.  Aj’s next EUA is on Monday November 21^st, and we are confident that he will stay in remission!

We haven’t shared this amazing news to the world yet because well life is hard.  Our family has been through so much the last few months, and it just seemed hard or even wrong to be excited when others (and for other things, we) are hurting.  But we realized early on in Aj’s battle, that you must celebrate every chance you get.  We did that throughout, every time we got good news and every time we got to go home after treatment, we had a little bottle of champagne to celebrate our strong little guy.  And though it took us a long time to express our excitement, we are expressing it now.  Aj went a few rounds with cancer and he’s winning, he has won every single round and will continue until he is officially cancer free.  We couldn’t have done any of this without our village.  And our village is so much bigger than we ever imagined.  Throughout everything, we got texts, calls, letters, countless gifts, stuffed animals, meals, love and support.  We don’t know how we can ever repay all of you.  All we can say for sure is that we will be here for all of you.  You made all the difference to us, and we love you.

AJ is Strong

AJ is Brave

AJ is Safe

#AjStrong     #FuckCancer