On Thursday, SD went to his first appointment in Maintenance. The beginning of the day mirrored his last early appointment: woke up fairly cheerful, kept asking for food and drink, had a hard time with the poke.... His skin over the port site seems to be getting more sensitive with each visit. We hope that with more time between accesses it will have a chance to heal, although it is just as likely that accessing will bother him more since it won't be so routine.
One of the other patients brought in a hermit crab and showed it to SD. SD was interested, but also quite wary of this strange creature.
Thankfully he was able to get his spinal tap an hour earlier than he did last time, so that helped with the hunger/thirst issue. He was quite clingy after his spinal this time, but all things considered, he was in a pretty good mood. Strangely, SD strongly preferred his mommy all day. Usually at clinic he only wants his daddy.
Nurse Mary brought in SD's file when we were asking many questions about the maintenance phase. Check out the size of this thing!
This visit felt like a great big good-bye, even though we'll be returning every three months or so. There were many congratulations, SD received a gift from Child Life Services, and Nurse Mary grew misty-eyed on a couple occasions. SD will surely miss her!
To celebrate this milestone in his treatment, we brought SD to the John Ball Zoo after his appointment. He remained clingy when we arrived and we thought he might just want to go home; he insisted on Mandy carrying him everywhere. We went to see the monkeys and lions, where SD showed a polite interest but just wasn't getting that into it.
When we asked him what animals he wanted to see, he said that he wanted to see the elephants - but they don't have elephants. So he wanted to see the giraffes, but they don't have giraffes, poor kid. Well, they do have camels (and camel rides), so SD agreed to see the camels.
We asked SD whether he wanted to ride one, not really thinking he would want to. To our surprise, he said he did want to ride one. So he got in line with Mandy and climbed right up on that camel!
This is truly a BIG step for him and clearly boosted his confidence. We are so proud of him! The rest of the time we were at the zoo, SD acted much more independent. He wanted to walk on his own, he showed more interest in the animals (even wanting to pet the goats), and he was much more cheerful.
We've been told over and over again that the maintenance phase will be so much easier and that we'll feel (mostly) like a normal family again. Right now, we are getting used to multiple daily medications again. SD is back on Decadron (the steroid), so we're also adjusting to the steroid-influenced behaviors.
Again, big thanks go out to those who have been praying for us and helping out!
