[LMB] OT: Leetle Alec update (hah! You know me too well; it WON'T be short)

lorraine fletez-brant lorrainenfletez at hotmail.com
Sun, 02 Nov 2003 22:30:35 -0700


Hi, all!

Couldn't send birthday greetings and then not follow up with Our New Family 
Life. Phoenix Children's Hospital, oncology ward, is our new address - it's 
a wonderful hospital and I can't say enough good things about the nurses, 
doctors, and other staff.

We've had a second liver biopsy that had a *great* preliminary result - 
because he is still in acute fulminating liver failure, his liver specialist 
feared that the liver had become too damaged to heal, and they were testing 
for necrotic tissue (this is the second time we've gone on this roller 
coaster) - we got the prelim findings this weekend that the hepatocytes are 
still healthy (in the samples taken) - happy dance, happy dance -, but 
completely bile-stained. Because the second bone marrow biopsy showed *no* 
leukemia cells after the 2 weeks of steroid chemotherapy, the doctors had 
assumed that the liver would likewise bounce back. It still has leukemia 
cells in it, which the doctors hope is causing the continuing liver failure. 
It is also possible that bile salts have clumped together and plugged the 
ducts. He's taking one medicine for that already; tomorrow, depending on 
what the final pathology report is, they may start on phenobarbital, which 
also helps with that. Everything about Alec's case is a real puzzle to them 
- and their cronies at other hospitals around the country. I am absolutely 
confident that he is receiving the best care he could get.

It is a minute-by-minute roller coaster - Pouncer, dear, do you ride this 
same roller coaster, too? You're still in my prayers, btw. And yes, cancer 
S*CKS, totally.

For the first 3 weeks, I stayed night and day - and could never really get 
any sleep. So of course I ended up with a really nasty respiratory virus - 
and *couldn't* go to the hospital for 7 days. Now, I spend the days and 
Frank spends the nights. We don't leave him alone but for short periods of 
time. (Yes, Rob Warnicke did get to *talk* with me - Frank said that Rob got 
about every fifth word in the conversation because I'd lost my voice. He, 
Frank, and Alec had a good time.)

We've had numerous whole blood transfusions, fresh frozen plasma, and 
platelets. (Bless those of you who donate blood). His liver numbers look 
horrible, but *he* was looking better - and the doctors are having trouble 
reconciling the two. Unfortunately, last night he spiked a fever and started 
sharp pain in his liver/lower lung area, which required morphine by the 
daytime today. He had a chest X-ray that showed no pneumonia, but showed 
that there seems to be fluid between his liver and his lung, possibly a slow 
ooze of blood from inside the liver to the outside if, during the course of 
the biopsy, a tiny vein was punctured or ruptured. By this afternoon, it 
spiked to 103.8. He's on gentamycin, vancomycin, and a third one, the name 
of which escapes me - IOW, big guns. His bilirubin count has gone back up to 
32.3 (horrible), but his clotting time (prothombin time for you medicos) has 
improved a little bit. That's good news because he is still bleeding 
internally somewhere. Maybe the coagulopathy is improving. Oh, the 
vocabulary I'm learning! If he still is spiking a fever and in pain tomorrow 
morning, they'll do a CT scan and an ultrasound to see what they might be 
missing. By the time I left (evening), he still had 103.8, but had *such* a 
peaceful look on his little, green face (he'd just had some morphine). Frank 
is under orders to call if I'm needed.

What really s*cks for the poor guy is that his liver failure precludes the 
use of tylenol, the bleeding won't allow the Motrins of the world, and they 
can only allow a little morphine when pain is unbearable. Everything they do 
with Alec is experimental, because there aren't other cases like his. I tell 
him, in all honesty, that he is the bravest soul I have ever seen. Can you 
imagine a bone marrow biopsy WITHOUT pain medication (his first one)?

In the meantime, we are greatly enjoying the prayers, good wishes, cards, 
and visits that y'all have showered us with. Lynette and Pilot sent Alec a 
card, with dressed up mules in New Orleans, that made him laugh. I've gotten 
to talk to the fabulous Kay Carrasco - on the phone (and she *hates* the 
phone). This weekend, it was a real treat to talk to Natalie Getzoff AND 
Claudia Muir, who is in Washington for the christening of David, second in 
line for the hand of Allison, The Adorable One, Natalie's baby. Alan VorMuir 
is, of course, still first in line.

So, we're hanging in there. Life on the oncology ward is far from dreary or 
pathetic. We joke all the time with the doctors and nurses, they do with 
each other, and we have gotten attached to the other kids. We've had lovely, 
short visits from friends and family. ( Talk about mortifying: the girl that 
Alec has a crush on came to visit him this afternoon. The doctor came to 
examine him during the visit. I pulled the curtain, at least, but the doctor 
started asking him when he'd last p**ped and was he constipated...for a 
15-yr-old boy, I imagine that THAT might be worse than the rest of it. We 
all had a good laugh after that later!) My law office is being incredibly 
understanding. They have said to just worry about Alec and not the office, 
at all. Bless the partners, too, for that!  Not to mention that Shawn is 
taking Billiam the scarlet-breasted parrot while we're AWOL from our life. 
Now THAT's a friend! And if we ever have any disposable income left during 
our lives after paying the part NOT covered by our insurance, Phoenix 
Children's Hospital is a cause I could truly get behind.

Hope you are all doing well; I'll report again soon. Thank you again for 
your concern and support.

Lorraine

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