22 September 2008

Miss Malia ~ An Update from the weekend ~

Hello Everyone!!

Malias Mom has provided us with another update from Sept 20th -- I have cut and pasted it here for you:

Hello all – just a quick update.Malia had her clinic visit yesterday and it was a pretty “run of the mill” visit. Her weight was down a tiny bit (which didn’t surprise us as she had been vomiting and not eating the whole week prior – pretty standard for the first week out of the hospital). Her appetite is starting to come back as of today J. Her ANC (Absolute Neutrophil Count) is low but hopefully on the rise. ANC is basically her immune system – it’s just a number that helps gauge the patient’s ability to fight infections. Any number 500+ is no cause for concern – you just use regular precautions. Less than 500 is at risk so use extra measures to stay clear from colds and such, and 250 and below is high risk which is when you need to be very cautious. Malia’s was 282 (the lowest it has ever been which makes her very fortunate because a lot of these kids have absolutely no immune system most of the time). However, they said at that level there’s really no difference between 282 and 250. So needless to say we are just having a very mellow weekend with no outings. We need to make sure that we’re being very diligent with hand washing yadda yadda yadda. And I will be taking her to clinic again on Monday for them to redraw her blood and hopefully her numbers will be back up.I thought that maybe her hemoglobin was low because she looks so pale right now with dark circles under her eyes and she was having some bloody noses (still is), and was in the crappiest mood! Well, her hemoglobin was fine so apparently her temperament is just because she’s 3 and her attitude is just a sneak peek at what the teenage years will be like – it’s not pretty. I did ask about the results of her last AFP level (the protein level used as a marker in tumor patients) that they ran right before her last admit. And YIPEE it’s down a lot! Remember, generally, the larger the tumor the higher the AFP. Once cancer is diagnosed, tumor marker levels help determine the amount of cancer present. Higher levels usually indicate more advanced cancer and a worse prognosis. The normal amount for a healthy body is about 5 or 6 and Malia’s started at over 300,000. It went down to 1609 and now it’s down to 79.3. I really like the direction and the pace that it’s moving! They’ll do another AFP test right before the next admit on 9/30.I also asked about her CT scan she had during the last admit. It mainly showed “post operative changes” (no tumors J). I asked about the density spot in her chest (remember there was a little concern about that in the very beginning but then the panel of radiologists, pathologists, and oncologists all agreed that they thought it was a simple cyst so they were not going after it and were just going to monitor it). Well there was no change (a good thing J) so that just gives more weight to the cyst theory and that it’s not a sign that it had metastasized. There is some fluid around her liver but it does not appear to be tumor related. They said that it is most likely some seepage from the surgery and if it does not seem to be causing her any discomfort then they will likely leave it be. If it starts to cause pain or she starts having unexplainable fevers then that would be cause for evaluation. But for now it’s just a mental note.I’ll post another little update after her clinic visit on Monday and until then no news is good news, right?Thanks for all the support – we love you all. HUGS!

Things are moving in a positive direction ~ Thank God!!! Thanks to all of you who remember Miss Malia in your prayers and who have been sending her well wishes with cards by mail -- you are all soo very much appreciated!! If you need her address please refer back to THIS POST for all of the deets ~

Stampin' Huggs to all of you ;o)

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