In January we were off to a FRESH START and it felt amazing to have a new year, full of promise and a shiny new-clean slate. We did great for about 6 weeks and then BOOM the virus came back to get us…WHY?!! Ironically enough the night before we got sick again, Enzo was crying because he said he missed Harvey (Great, Great Grandpa/angel who has been with us for this journey according to Enzo). I asked him where he was and how long he’d been gone and he said “about 6 weeks and I miss him so much” …the next morning Harvey is back and we are sick again…Bizarre.
So Enzo missed 3 more weeks of school, and just made it back this past Monday and I know he realizes, and is frustrated by, how behind he is, but he keeps pushing forward. Last night he needed to take 18 pills after his hospital visit, not to mention all the liquid meds and vancristine and benedryl, he was falling asleep on his homework pages but still managed to get it all done! Getting him to school on time has been a huge challenge. There are still days when I can get him up, he is fully dressed and we are just about out the door and he runs back to take a shower because he is itchy from his meds. Other days we make it to school, get out of the car and splat, he throws up all over himself in the parking lot…UHH SO close!!! So the days I do get him there and he is on time, and doesn’t “unload” in the car or parking lot, I feel like I have accomplished something pretty big!!! Each day we just see what comes and try to roll with it as best we can and just keep pushin through, even when it is tough. I feel extremely grateful that his teacher and the principal at his school are so understanding about his crazy inconsistent schedule.
Despite how sick Enzo has been, he still remains positive. On the way to the Dr’s office Sunday morning, I asked him how his ear was feeling (after being up the entire night in so much pain he couldn’t put his head on a pillow) and he said “a little bit awesome”. 10 mins, later the Dr was telling us he had a double ear infection. Unbelievable!
The very hopeful news after so many weeks that we have been sick and through all the chemotherapy holds, is that Enzo’s numbers have remained high enough (consistently above 2600 and yesterday 4000 plus) so we were able to get him back to 100% dosage on ALL of his drugs. I am hoping he can keep this pace for the remainder of his treatment. He is still on target to finish in June!!! YES!!!! His last LP (spinal procedure) is April 26 and we have not decided yet if we will do a bone marrow test at the end, but it is on the table if we chose to. It is no longer part of the protocol however.
As some of you know “Make a Wish” came 3 years ago and Enzo’s wish is to meet the Barefoot Contessa and cook dinner with her. He has waited longer then kids wait to meet the President of the United States, which I find a bit INSANE but no matter how many times they have asked if he wants to change his wish (just in case Ina Garten says “NO“) he won’t do it. He has been VERY patient. Ok, REALLY Ina?!! No offense BUT how many 3-6 yrs old boys want THIS as a wish? I highly doubt she is flooded with requests, but who knows. Well, they came back to the house last week to revisit and AGAIN his #1 wish remains the same. When Liz the representative held up her hand to explain he could chose from 4 different wish types, he listened carefully…As each finger went up and down. “The first type of wish is to meet someone, the second type of wish is to go somewhere, the 3rd type of wish is to be someone for the day and the 4th wish is to have something” and he is looking at her and concentrating intently and she asks “what do you think”? And Enzo says “what about the other finger”?! HA! And she tells him again, “no, there are 4 types of wishes“ and “Enzo, is there something you would like to have”? His reply “um, colored pencils are nice”!!! So after MUCH back and forth and ideas about being a ninja and possibly riding in an army tank that shoots snow balls was ruled out, he FINALLY agreed to add “swimming with the dolphins” as a possible 2nd back up wish, but is still ultimately holding out for Ina. So we will see….
He is definitely a 6 year old boy with a great imagination! As much as I would love to keep him a lil boy, I can’t help but notice he has lost his 4 front teeth in the last 2 months and his clothes are either shrinking in the dryer or he is continuing to defy the Dr’s by getting taller every week, even during a phase in treatment he is supposed to be on a “growth pause”…yeah sure! Tell his feet that, he has some seriously large “dawgs“!!! Ha!
Enzo and I have continued to have conversations about his cancer being his “friend” and I completely respect his need for peace within his body, but I have explained that his “friend” needs to live elsewhere!!! So after he has an LP (spinal procedure) where they remove his spine fluid and fill his spine with chemo. We keep a syringe of our own with fluid and put it in the freezer and he has asked for time alone to be with his “friend” and say goodbye... I have to hand it to him, he is very respectful, very peaceful and just gets it, on a whole other level.
He recently brought me some “pieces of earth” (a twig, pinecone, shell and leaf) when I was meditating because he said it would help “transport me through time and space faster…Where all the answers of the universe are”… Man, to say I am in awe and love this kid, is a HUGE understatement! It continues to be an absolute privilege to take care of him and learn from him EVERYDAY. We are truly blessed in EVERYWAY. And I am forever humbled by his larger then life presence in my life.
Thanks to everyone for your continued love and support.