In some ways it seems like forever ago that we were back in cancer’s grip (July) when we spent a couple weeks in NY learning of suspicious spots in the liver, more testing, confirmed abnormal, back home, back to NY…. biopsy, waiting, waiting, followed by an enormous sense of relief. And in other ways it feels like yesterday. We sort of teeter on this line between staying ‘in’ the world of children’s cancer, where we are still traveling every 3 months + for Peter’s tests, the intermittent ‘scare’, still seeking knowledge about new treatments, the search for a cure, keeping tabs on the children who are beating it and those are fighting it, some over & over, those who are not so fortunate but get the ultimate cure, not ever wanting to lose the perspective we have gained on life and how quickly things can change; and ‘moving on’ to where it doesn’t consume our lives. There is no easy way to balance it so we just do. Not really sure where I’m going with that, but I think about it every time one of us leaves the rest of the family behind for 3-5 days and the feelings of stress it conjures up no matter how long it’s been, how long Peter has been “NED”.
This morning was one such day… Ty and Peter flew out and are now safely at the Ronald McDonald House of NYC. Pete called earlier and told me there was a carnival in the playroom downstairs… and he made sure to let Dad know that it is open until 9pm! There is nothing better than seeing him excited / distracted upon arrival, because there is definitely stress involved for Pete when a trip to NY is on the horizon. He doesn’t complain about going, ever, nor does he associate what the stress is, but there are headaches, tummy aches, etc that preceed every trip.
They will start Tuesday by going to the clinic for the IV placement, blood draws, visit with the NPs/Doctor. Then he will have CT scans (head/neck/chest/abdomen/pelvis), MIBG injection, and an Audiogram. On Wednesday he has MIBG scan and Bone Marrow Biopsies, followed by a Liver MRI on Thursday. Barring any flight delays they should be back home late Thursday night.
Of course we welcome your thoughts and prayers for a successful, uneventful visit. We are especially thinking of our friends Erik & Mary, who couldn’t be more deserving of being honored at the Children’s Cancer Research Fund gala on Saturday evening. They are both incredible, determined young adults who are trying to kick this stubborn, sneaky disease for the fourth & first time, respectively. And an adorable little guy we met in NY in July from WI, same age as Pete, who has learned of possible relapse and is having surgery this week.
All on caringbridge – erikludwinski / marycatherinevirnig / jackbartosz
Will post as we have news this week!
