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Archive for November, 2006

Back from the sleeplab

Wednesday, November 29th, 2006

Ana at the sleep labWell they set us free early Tuesday afternoon! Not making Ana do the last nap session, it had something to do with the fact that she didn’t nap the last 2 times prior to that. In the full head shot she looks like a Snork.

We did run into the mother I mentioned earlier and the twin brother of the girl. Please keep them in your thoughts on a peaceful passing of their sister/daughter. They were removing the resperator yesterday afternoon in hoping of bringing her home for the time she has left.

I asked her mother if there were any signs of her improving though the treatment. To see if were in an area of false hope… And from the sounds of it we should gave caught Ana’s tumor growth early enough to hopefully avoid the same fate. Be sure that I’ll be asking our doctor about this on Friday (Dec. 1st) at our next chemotherapy session.

Sleeplab, grim news Ana is not alone

Tuesday, November 28th, 2006

I’m in St. Paul tonight, Ana has a sleep lab tonight then a nap lab tomorrow. So lucky me I got the duty to bring her down, my wife had to work tonight and only one parent can stay anyways.  The drive took much longer than normal since we are in the middle of a rather nasty ice storm up north in Hermantown/Duluth.

Anyways, I ran into another family tonight as I was going out for a bit of “fresh air” and I strike up conversation with this other family walking out and I mentioned what we were in for… and they told me their 9 year old daughter has the same thing! At last we meet a family in real life going though the same issue. The talk went sad after that they mentioned that they got news earlier tonight that their daughter has been given only 2-3 weeks to live.  Same issue a brain stem tumor, same doctor (Mortel) and yet this 9 year old girl’s tumor has grown down though her spine and is overgrowing in her brain making whats left to fill with fluid. The mother is hoping she will get to a point where she’ll be able to bring her home for her last few days.

I asked about bringing Ana in to meet her, and she said that wouldn’t be a good idea since she isn’t breathing on her own and would scare even a healthy child. I nearly broke into tears there as I thought that could be my daughter I was talking about.

I then asked “how did you find out there was something up with your daughter?” Where this girl had been vomitting and had headaches every morning.  Which made me think that had I listened to the doctors at the Duluth Clinic, we might be in the same place as this family.  Where perhaps because we had caught it so soon and gotten the support from the Dr. Mortel to start chemo without waiting much longer, if that will save my daughter from the same fate.

After this chance encounter I a rush of mixed feelings, I still have them now as I consider which keys to push next. I feel blessed that my daughters tumor is shrinking and should not be in this terminal state. Then I have the greif I feel in the small encounter with this other family where which prayer do I do for them?

I called Sara and told her with a very heavy heart and with the relief that with how things look we will not be in the same spot.

Hopefully I’ll run into them again tomorrow and I can get the little girls name.

No blood needed here…

Tuesday, November 28th, 2006

Last time I posted I left everyone hanging about the upcoming transfusion.  Luckly we have a great doctor watching over Ana who ordered another CBC count before going futher than needed on the addititon of blood to her system.

The test taken Wednesday morning showed her hebaglobin count was at 7.9 low but not in the danger zone as the 6.5 was.  So with the different result he requested another count be done which came back at 7.9.  This kept her from needing to get the transfusion.

So what would make it change so much… Well with the port thats under her skin, they need to flush it first with saline before doing the blood draw.  Sometimes what can happen is they won’t take enough “waste”  in the first draw.  Making the draw they use for the test contaiminated and will give off lower test scores.