Tuesday, February 3, 2009

Another long day.

Talk about starting a series. We have had some really long days lately. We just walked in the door, so I may make this short and sweet and give some more details tomorrow, but here it goes...
We arrived at St. Francis at 7:45 this morning. Drew labs. Twice (no luck the first time.) Then to Radiology for the GI study. Olivia screams. 45 minutes later, the study is done. Then to Dr. Pearl's office. Wait. Wait. Dr. Pearl "now why are we doing this G-tube." Apparently there is no evidence of reflux on either study, so we will move on to visit the GI doctor and have a 24-hour impedance study done (more on this later).
Then to St. Jude. Wait. Wait. We meet with Dr. Al. Her counts are better. Hemoglobin 13.3 (because she had a transfusion on Thursday). White count up a little to 5.8 (that's good). Platelets at 40,000 (should be a little better considering she got platelets on Friday morning). The biopsy results from the hospital are back, but we still await the results from St. Jude in Memphis just to confirm these findings. But, we are basically back to where we were over the summer. She has MDS - RAEB (Myelodysplastic syndrome - refractory anemia with excessive blasts) What does that mean, you ask? Well, as far as severity, she's right in the middle. She has about 5% blasts in her bone marrow. 20% blasts is considered a diagnosis of AML (acute myeloid leukemia). Dr. Al can't imagine that this would go away, again, so for now we will watch and wait. She'll have labs drawn once a week for the next couple of weeks and she will get transfusions as needed. In 4-6 weeks, he will repeat the bone marrow biopsy. If everything looks the same as it does now, he wants to put in a line and start chemo. If by some crazy chance, this does resolve itself, he said he would have to make her into a case study and share her story with other medical professionals, because this is unheard of. He's not able to explain why it disappeared last time and then came back. He's pretty much as baffled as we are.
Good news - we don't have to go to Memphis for treatment. Olivia doesn't meet the requirements to be part of cancer research because of her other issues (oxygen, cardiac issues, etc...) I suppose there are blessings in everything.
Next, to meet with the GI doctor. He scheduled us for the 24-hour impedance study for next Tuesday. It doesn't sound pleasant, but it doesn't sound horrible either. We are starting to have a lot more questions regarding the G-tube, which I thought we were good with. More on that later.
All in all, I'd say it was a good day. We felt very comfortable with the information we received at St. Jude, which was our main goal for today. I'm sure there are many more details, but it's getting close to bedtime and we still have homework to do. Thanks so, so much for all the extra t's and p's. They were truly felt all around!


threekidchaos said...

That's a lot of info & there's still more? Sounds like an exhausting day for everyone.


Judy said...

Oh my, I don't have to understand all that and my head is spinning. Ryan's not much of a blog reader (he doesn't even read mine :) so I've been trying to relay to him what's going on, but this time I told him I give up and he'll just have to read it for himself! I know God will bring the right people together to bring clarity to each situation! Ryan and I will both be praying that you'll have wisdom and that the doctor's will have wisdom to know what to do with all of it! Whew...I hope the rest of the week is calm and uneventful!