I know there are some kids his age that understand this diagnosis a little better than he does - maybe they’re more intuitive or maybe they just have older siblings - but he is still mostly unaware. For him a year is a lifetime and I don’t believe that he remembers when this is not his normal. For me, a year has allowed it to become my new normal. The horrible puffiness and the losing his hair are gone, and I don't mind being reminded what was happening in a year or two. I'll post about it on my Facebook page fairly regularly because there is nothing heartbreaking or horrible about it.

We are in maintenance right now, and it lasts until November 2021. We go once a month to the doctors to check his blood work and get an anabiotic and every three months he as an anesthetized spinal tap, one dose of Vincristine, and a weeks worth of steroids. For that week or two he’s very cranky and has nightmares. I am grateful every time it comes around that it’s only every 90 days instead of every 30 like it would’ve been if we we’re diagnosed a year earlier than he was.  He is still required to go to the hospital if he gets a fever, and this will be required until we get this port out, but we haven’t had a fever in months (knock on wood!) because his blood counts are good and his risk is very low.  We have to give him oral chemo medicine every day but he doesn’t mind taking them and the side effects for him are not bad. 

This summer has really flown by but that's a consequence of the pandemic. I think he had a great summer and got to do all of the things that he remembers doing. We went into the woods a lot with him, and we went to each of our grandparents after the doctor eased up on the travel restrictions. Luke and I went to see my sister get married in August in New Orleans, we had friends come to visit us who had been socially distancing, and we even went to the beach house which was made available to us by a children's cancer foundation.  Things are different because of the pandemic and Grant's immunocompromised state, but we make new traditions and he forgets that they aren't the old traditions. 

We don’t take him around children or frankly anybody in this pandemic but we’re trying hard to get a pod together so he can at least have one or two friends to see regularly.  He has not had regular playmates or seen his friends for a year.  I been trying to do a little bit of home school preschool and one of the things we've done is get a calendar for him this year and have been marking off the days. I am trying to instill in him a sense of seasons and weeks and year following year. He’s doing very well, but occasionally he will have a heartbreak where he wants to go back to a previous day - a day when his grandparents were here, a day when he didn’t get angry and have consequences. I'm constantly reminding him that we can never go back, only forward. It's like that with the cancer diagnosis. We are stronger and richer this year but also weaker and poorer, but regardless of what we've lost or gained today is a brand new day and it's the only today we're going to have.