Thursday, August 11, 2005
Worn out but winding down
You know I'm glad it is starting to get more normal around here but man, talk about being worn out by it all. I'm glad Abby doesn't have 2 Delayed Intensifications (DI) like a lot of kids do... for her sake and mine. Seriously I feel like I have been in a fog for the last few months, well, maybe more of a tunnel. We've just been so focused on all the Abby things to do and take care of plus just trying to continue to do life, which on a normal day with 2 little kids is probably challenging anyway. Then add on all the beginning of a school year job stuff and bam, we suddenly became a very crazy family. But, like I said, I think it is starting to wind down, and wind down to a more reasonable level for the long haul.
Let's recap. Abby is almost done with DI and has done very well in the side effects category with very few to mention. It looks like the 3 weeks of intense antibiotics and Vanco/Heparin locks in her Broviac tube took care of it. If she doesn't get anymore infections then we won't have to be in a hurry to take it out. Abby still has no, and I mean NO immunity protection, her total white blood cell count is still around 300 (normal kid = 15000 I think) and her ANC, immunity component of her total white count, is unreadable. She's only needed one transfusion so far of packed red blood cells and 1 of platelets. If she goes any lower on either though, they'll have to transfuse her again. Currently her red count is at 8.9, normal is around 15, and platelets are around 30,000, usually 150,000-200,000 is normal. So thing are looking up but she still is a bit "in the woods" you might say.
With her immunity gone, we don't get out much unless the place is really empty. Last night we went to the ice cream store, ordered and then went and sat outside. And this last weekend we went a little bit up the canyon, not too far up with so little hemoglobin (oxygen carrying red blood cells), and the girls got to get out and played by a little creek, that was a lot of fun. So, as you can see, things are getting much better.
Let me also fill you in on the future plans... DI finishes on the 23rd I believe. From there they let her counts all come back up for a week or more and then start her on the Long Term Maintenance (LTM). LTM will last, well a long term of time, a little under 2 years. I'll try to post the image of that road map, but basically it is a reoccurring rotation of nightly meds, monthly or maybe 6 in between spinal taps, some IV chemo and monthly or more blood work, plus check ups. Also in the beginning of this phase she will be getting her Broviac out and a Medoport put in. This device is also an access port but it hides under the skin and to access it she'll get one "oweee". We are still deciding what way we want to go with this issue. Finally, she will be getting a corrective surgery for her eye once her counts get high enough to do that. The nice thing about all of these surgeries is that if she doesn't have any blood infections she can have them done all at the same time, eye, Broviac out, Medoport in, while she is under general anesthesia.
So, that's the scoop.