Faith, Trust and Pixie Dust: Here's the plan...

It's been a long three weeks and LOTS has happened in our household. We started with my birthday, we've had Mother's Day, Alyssa's birthday and Clif's grad school graduation all along with Ella's weekly infusions and doctor appointments!!! We've been blessed with visitors from our family and friends and lots of fun activities. This has been great since Ella had to do another 4 week treatment of Solumedrol infusions. So… here's the update:

At the end of the 4th treatment last week, we did a 24 hour urine collection. Ella had started a new medication at the end of February and they wanted her to be on that for at least 8 weeks before checking the urine levels again. Unfortunately, we got word this morning that the protein levels have actually increased rather than decreased. So, after the last 8 hours of being on and off the phone with doctors, we've got two separate roads. They both begin with another kidney biopsy… that will be scheduled for either June 6th or June 7th at Texas Children's and will require a hospital stay for 1-2 nights. After the results are back then the roads diverge. The first one, if the biopsy shows there is still active inflammation in the kidneys then Ella will have to go back to chemo cytoxan treatments. The other one, there is a possibility the biopsy shows that the protein is a result of by-product just getting through because of the scar tissue already there. In this case, she would NOT have to go back to cytoxan, rather she would begin another brand new medication. They told us in December that 65% of her kidneys were chronically damaged so we know there is quiet a bit of scar tissue. We also know she had a lot of inflammation so there is a chance that is still there as well. Basically, it's about a 50/50 chance either way. Best case scenario (in our minds) is that it is the second option and protein is just coming through the scarred areas. Either way, the doctors will now bring in an oncologist in order to watch out for her bone marrow. The reason they took her off chemo to begin with was because it was beginning to damage her white cells and bone marrow. If she has to go back to it then she will need pretty strict monitoring. Also, the alternative medication for the second choice has a possibility to damage her bone marrow as well. So, we will welcome the 5th specialty doctor to Ella's team!

I know this is so much information and since I did not go to medical school I'm sure I am not explaining it very well. I have to ask 500 questions, grill Clif and then grill Clif some more before I feel like I understand it! So, first things first, we will get a call tomorrow or Tuesday confirming the biopsy date. The AMAZING thing is that between now and then there are NO infusions, meaning NO needles and NO pokes! She will have two weeks of not being poked and prodded on, celebration! This will be the first time in months that she will go two weeks without being poked on!!!

Between now and then, please join us in praying for: