Wednesday, April 8, 2009

......six degrees of hospitalization.....

I hugged Lily and she felt warm this morning. We had her bi weekly check up anyhow so I didn't take her temp. I focused on getting everyone ready and didn't argue when she didn't want to put clothes on. This could mean a couple of things. She probably is getting my cold- and unfortunately she's on the downslope of counts so it could be an ugly week. She doesn't wear clothes when she feels yucky. It could be the meds, it could be something else.

There was minimal traffic and we get into clinic ahead of schedule- this of course is because Phil is in the car with me. If he was not, traffic would have been heinous. Phil is with me because on Monday I got a call from Florence- I don't like it when they call me. It's never to just say hi, or see how it's going- it's you need to take Lily here and do this or we need to adjust this and this OR the lab had a mix up with the blood samples and we will have to redraw Phillip and Bella's blood. Bloody perfect. That was such a fun experience to begin with. I can tell that Florence has the same thoughts as me since she suggests we might do them separately this time. OR we could punch Phillip in the nose, drip it into the tubey thingy and send it off which might actually be less traumatic for everyone involved. Phil could help with Bella today before work- so we set that up. Friday the kids have off school, so I could probably bring Phillip along then.

So we get Lily accessed. Florence had been chasing her around the clinic with the ear thermometer because I told her that Lily was a little warm this morning. Florence does not manage to get a temp until after Lily was bundled and accessed and has calmed down. It's 100.3. At 100.4 we get an automatic trip upstairs for a minimum of 48 hours. She unwraps Lily, lets her sit for awhile and retakes it. Down to 99.8. Phew. So more like 0.6 degrees of hospitalization... Again, only because Phil was there. If I was on my own it would have been 100.5 and I'd be chasing Bella around the ward right now instead of making dinner. Multitasking...amazing stuff. The doc comes in and Flo gives him the report. He laughs- her temp wasn't high because she gets all worked up about accessing was it? Good, he is not exercising his option in conservative treatment and sending us up. So I ask "You don't happen to be on call tonight?" He looks at his pager- Yep. Oh man I groan. He looks wounded- "no it's not you, it's that of the 3 middle of the night calls I've had to make- you've always been the one on call- that doesn't bode well for either one of our evenings." She'll be fine he says, uh huh- we can keep our fingers crossed.

So now it's Bella's turn. She has gathered that the patch in her arm means she has to get a "shots". I place her on the table and she lays down and puts out her little arm. I am proud of how she is handling it and my heart twinges at the same knowing that somehow in her little world this is "normal". She puts her little hand in Phils and Lily pokes her head in to get a closer view. She is all about sharing the pokes. Florence is mid blood draw when Bella picks up her head and looks at her arm- her head thuds back to the table and for a second I swear she is gonna pass out. She starts to panic, but it's over. She wasn't bundled and I didn't do more than hold her legs when she started to panic. That's one tough little monkey. Phil and I lament that we did not tape it as instructional material for young Phips.

So Good News and Bad News. Lily's MRI and CT scans all came back good- no evidence of disease either metastasis or new. Good. Her blood plasma level of mitotane is no where near what it needs to be so we have to increase her dose. She is at 750 mg, and we have to up it to 1 gram. 2 pills instead of 1.5. The biggest problem- by increasing dose over 750 mg we increase chances of worse side effects- neuropathy, nausea, all the fun stuff. Phil says- it's working- why increase it?I give him the antibiotic analogy- after 24 hours on antibiotics- you feel better- if you stop taking it- the infection comes back. He tells me - I get THAT, but how do they know that dose is where it needs to be? And that my friend is why we are in what they refer to as a trial study. They don't know how these doses affect kids- they have some adult data- but kids and adults are vastly different beings. So this means the next few months won't be as easy breezy(insert sarcastic tone as appropriate) as we had hoped. We will have to watch her more closely for side effects and cross our fingers there aren't any and that it's gone and won't come back.


  1. I think you're all very brave.

  2. Hi Honey,
    Keep up the good work. You and Phil have gotten Lily and the rest of the monkeys to this point. Lily is nearing the end of treatment. You have gotten some very good news that the treatment seems to be working and the most recent CT and MRI results were negative. You do have it in you to finish what you started. Just look how far you've come and remember where you started. I love you guys. Love, Mom (Grandma)


Lily Kay Monkey

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