Wednesday, July 16, 2008

Too tired to come up with good title

All went well today. Mandy's counts are definitely trending down. The last four weeks have one like this 2100...1940...1490...760. There is a pretty good chance that she may not make counts for chemo next week. These numbers are called her ANC(Absolute Neutrophil Count) and is a gauge of her immunity. Her cycles of chemo are 6 weeks, 4 of those she gets chemo and then two weeks to rest for count recovery and then the next 6 week cycle begins. In order to start her 6 week cycle her ANC needs to be at least 1500 on Week 1, the first week back in chemo after a break. For weeks 2,3 and 4 her ANC has to be at least 500 to get chemo. Clear as mud so far? There will be a quiz afterwards, so pay attention.
So, looking at the definite downward trend she has been showing on this cycle, it is a real possibility she won't have an ANC above 500 next week, in which case they would hold chemo and wait for her counts to rebound.

She did great with chemo again today. I am so proud of her and how she has made the transition to the new place. I really thought it would take longer than it has, especially after how rough the first day was. But, she is a trooper and has done beautifully.

The Neuro-Oncologist called me today while we were still at clinic and told me the results of presenting the case to the tumor board. It was basically what I expected. Most of the time, in most Neurofibromatosis patients the hamartomas in the brain stem and several other areas, do not cause problems. I really hope that is true for her. However, Mandy has always been all about the "unusual presentation." Back in 2005, hamartomas on her cerebellum that should not have been symptomatic, were VERY symptomatic. So, that said, it kind of leaves us with they SHOULDN'T do anything, but in her case they could, just due to past history. They also agreed that the optic gliomas were stable from the scan in March to the scan in June. She will be due for another scan in September. So, nothing horrible, but nothing new either out of that. All the additional bloodwork came back. She is growth hormone deficient, which is no surprise at all. We couldn't treat for that even if we wanted to because obviously she has things that we don't want to grow. We have known this one for a while. No sign of precocious puberty, which is good. Thyroid was off a bit, but it seems that is only an anomaly to her and nothing to be concerned about.

The premedicating and longer infusion have handled the allergic reaction to the Carboplatin(one of her chemo drugs) very well. She has had no other issues, thank God!

We will have to make some decisions about the Atlantis trip after we see what her counts are like next week. It is not a good idea, or safe, to take her if her counts are bottomed out like that. We were told to kind of play it close to the vest this week and assume the counts are continuing to head down. So, no busy places(malls, playplaces, etc) and lots of diligent handwashing etc.

So, another on in the bag. Hopefully, she can swing those counts back up the other direction next week.

Thanks for checking on her!

Love to all~

1 comment:

Jennifer said...

thanks for the explanation of what some of the terminolgy is (anc) and where those numbers are supposed to be! I'll be praying that the numbers climb up and end up where they are supposed to be. I sure hope Atlantis isn't cancelled. Poor kid needs a break!

I told my husband about Mandy's N-O and that you liked him so much, etc, etc. His response: "That'd be a good excuse to go to Florida." I laughed and said "I think we need to try a little harder to find someone here first." But MAN would I love to be in Florida - especially right around next FEBRUARY when I'm about to go crazy from all the snow!

Besides prayers, let me know if there is anything I can do from here.

Thinking of you always!