Tuesday, May 26, 2009

Dog Days of Summer

Talk about a busy day! And we were "done" by 12 noon. We left early to pick up Phillip at Stew's house. He needed some "guy" time and got to have a sleepover there last night. I got the girls dressed and myself showered and dressed and then gave Lily her meds. She promptly projectile vomited it. She was a doll and deflected it so that although I did not get drenched- while she was bathing I had some heavy duty cleanup. I worried about her not getting her hydrocortisone dose- mostly since we had a bunch to do- so I packed it and made it out the door.

Although Bella hinted at it over the weekend- she is officially "over" her fear of Aaron who is home from West Point for a short break. She also warmed right up to our friend Ed and when Stew comes over(without Jackie) she makes herself a fixture on his lap. This means that she periodically will end up with food or drink in her hair- as we have found these guys eat constantly! All is fair in love and eating though because I have caught her dipping her hands in their drinks or licking chips and putting them back and I just giggle to myself. But I digress.

We get to Stew's house and Bella grabs her bag, hops out and immediately tells everyone goodbye. Allright that isn't exactly how it happened. I was finishing up a quick call and I saw the kids file out of the car. So I head into the house- greet the guys- make chit chat- see 3 of the kiddos running around- wait- where's Bella? "I dunno" shrug the boys we didn't see her. Oh crap- I left her in the car. I start running to the car, expecting the neighbors to be standing around in disgust as my lil redhead screams in anger...but nothing. I open the door- she's sitting quietly sucking her thumb, she looks up at me "I wanna come too mama." Ok love, let me help you out of the car. So this is the point that she grabs her bag and hops out. I guess I can't be surprised that she didn't want to hop back in the car to go to the hospital with us. Aaron's report was that they went to the park, she said she was done they went home and she fell right asleep on the couch. Since he was doing me a huge favor by watching her- I was glad she was easy for him. I even forgot to tell him to hide the markers and scissors.

We get to the hospital and find a spot. Phil and I are already lamenting how much we will miss our temporary handicap parking placard- but will not miss the handicap of really needing it. First up is our photo shoot with the volunteer dogs. I was only expecting Indy- but there were 4 of them. It was like an afternoon out with my kids- but furrier. We got right down to business and Phillip and Kiera and I had the job of watching. It was a riot watching 4 people, try to arrange 4 dogs around Lily while she just sat there with this silly grin. Of course I must've hit the dial on my camera at some point because all the pictures are slightly blurry-but I got a great one of her and Indy- which is what I was hoping for. Apparently the photographer got some good shots-At one point I asked him which was easier dogs or kids- he said "neither". Ahhh a still life kinda guy.

One of the things I've noticed is that even if there isn't a lot of background noise- if there's a lot of activity- she can't hear. In a situation like this- she has no idea what we are telling her to do because since we don't have a puppy(other than Bella- and I don't believe in leashing humans even if they do exhibit puppylike behavior most of the time) Lily doesn't know much about dog lingo- hence making the words confusing to her. Note to self- call and check on hearing aids. sheesh.

So we head off to clinic and are greeted with the usual fanfare. Everyone is shocked at how fast her hair is growing back in and how blonde it is. Phil still contends it's not blonde, it's white and it's sticking straight up because of all the stress she has been under the past few months. She was very brave for the port access and since she is on the upswing- and while Lily was going on and on about how she didn't want to take the needle out- Florence drew the blood she needed and immediately pulled the needle out not even giving Lily enough time to yell ouch! And she didn't fuss about it either. Fortunately she wanted to stay and watch a movie because Phillip and Kiera both had apointments with "the feelings doctor". Whenever they have a day off that coincides with a Lily appointment- they take turns meeting with a child psychologist. I figure it just defrays their out of pocket expenses they'll have to shell out later for therapy as adults.

After she talks with them- we talk about how they are doing and what we can work on. The past few sessions have been about death and their worries, as each was very saddened by Elikia's death. They also talk about feeling left out and all the "normal" things that go along with being in our situation. They still are coping very well, which is good to hear. I did chat a bit with her about the kids being positive for the p53 mutation and kinda if we were heading in the right direction. Basically we have decided that we will do preventative screening, nothing invasive at this age- but we are going to treat it like normal screening- because for them- it will be their normal. There is no sense in giving them the nitty gritty details, because they can't understand the overall implications and it will scare them. She agreed whole heartedly. They know we have a family history of cancer and that helps decide which tests we have to do- some people do other tests and some people don't do many at all.

Lily's bloodwork is good and we are cleared off for a whole month. In a couple months it will be every couple of months and then a couple times a year. Right around our next visit- we will be done with mitotane. According to my calculations we are done on the 29th of June- but Dr. K is gonna crunch the numbers to be sure. For those keeping score at home- this is week 28 of treatment. We are done after week 32. Which means I have lots o party planning to do! I'm tempted to start counting down days- but I will wait for the official count before I do that.


  1. I thought I could see a little hair in that top picture! The knockout smile was impossible to miss though! Love you!

  2. We just saw Aaron at Grant's graduation. Beautiful pictures of Lily and dog, kids and Aaron, 3 brothers and Lill. Lily looks like she's growing and thriving. These are the good times. Enjoy them. Love to all - Mom Deb


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)