on friday night and saturday morning i had a glimpse of my former life. a remarkable calm settled over toby about 6 hours after the last drops of chemo went into his system. his features softened, his eyes grew wide, the possibility of a smile played on his lips. and most of all i sensed relief washing over his small body. around 8 pm he said it was bedtime (good boy) and we somehow resurrected a bedtime ritual that has become difficult to maintain in the chaos of hospital life: toothbrush, no bath yet, but books and kisses goodnight. just as we were ready to turn off the light a magical vision appeared and the snack cart arrived. on friday nights volunteers at mskcc wheel around a 3-tiered trolley packed to the gils with candies, treats and all manner of sugary/salty loveliness. it felt like a dream as toby picked out popcorn, cheeze doodles, starburst, powdered donuts. he logically put them aside for "tomorrow" (good boy) and fell to sleep.
saturday morning we woke early and toby smiled and laughed as the sunlight came into our room. we played catch with a beanbag tiger, drank tea and then toby surprised me by stating that he wanted to go to the playroom. he moved easily from bed to floor and started walking down the hall as i struggled to keep up with him while pushing his "pole buddy"/massive iv pole. we spent almost 2 hours in the small play area, with toby making me eggs in the playkitchen, re-enacting a beansprouts day with the dollhouse and schoolbus, and playing a mean game of luckyduck.
we also received clearance from our docs to take him outside for an hour yesterday, the first time he has been outside since april 17. it was a beautiful day tinged with sadness. i sat in the wheelchair with toby on my lap and stephen pushed. the trees are still in bloom on the upper east side and we greedily took in the sights. toby marveled at the light breeze and told me suddenly that he ate some wind. he has lost 5 lbs, down to 39 lbs since we checked in.
at the playground i felt a shot of energy animate toby's body, so we stopped to check it out. and then we met up with our reality again. toby was tired, the swings and slide were off-limits, he valiantly attempted to jump through a hopscotch game and then leaned heavily against me crying that his stomach hurt. back to the chair to look at busses, taxes, numbers on street signs. and then back to the room where he was so tired that the rest of the day became a blur.
i need your help. we have been told that we need to find a new home for our 2 cats. they provide too much of a health risk for toby with his compromised immune system. this will be a very difficult transition, as both yoni and toby are very attached to bashevis and mushroom; they are a part of our family. but i need to find a home/fosterhome for the cats very soon. they are about 11 years old, both neutered males and they mainly eat and sleep. if anyone is willing to host them for about a year, please let me know.
i want to give a shout out to our incredible community of friends and family. yesterday i had some amazing home-cooked food for dinner. heather and jessica did shopping, coordinating and more, stephanie compiled a packet of support resources, sue oren came to visit, fran visited and delivered notebooks, david+betsy and grandmother+grandfather pannone sent gifts and love to toby. susan fox of parkslopeparents sent emails on our behalf. and saba and sabta unguru are with us always, sitting in the hospital room, cleaning the house, being there for yoni. i am scared of what will happen when you leave on may 5. my brother yoram spent the day at yoni's soccer game in prospect park yesterday before heading back to maryland. all of you are wonderful friends. we will need your continued strength and love as we navigate. thank you so much.
Ed Clark, Christmas Guest
6 months ago