We had a 3 hour appointment with Meri’s nephrologist today (I was telling my mom yesterday that you know you’ve moved to a new level when you have your child’s doctors’ e-mail addresses and home phone numbers!!). We spent the time talking about how things have gone up until now and where we might go. Without getting overly technical, there are a lot of good signs (protein count in her blood is spot on perfect) and some continuing concerns (too much protein in her urine, although it seems to be slowly trending down). The best news from today is that if we do decide we need to move to more aggressive therapy (via Cytoxan) the dosage used for HSP is lower than they use with cancer patients so the side effects should be much less severe. She could have some nausea and could lose some hair, but she probably won’t have massive vomiting/diarrhea or go bald. And best of all, her fertility should not be impacted. I can’t even begin to describe what a relief this is for both of us.
Dr. Greenbaum used a really terrific analogy today to help us understand what’s going on with her kidneys. If you imagine her blood stream as a pot of boiling spaghetti, the glomeruli in her kidneys are the colander. As the blood flows into the kidneys, the glomeruli let the waste (cooking water) pass through and the protein (spaghetti noodles) stay in the bloodstream so they can be delivered to her organs, muscles etc. Right now, because of the damage in her colander the holes are too large and too many of the noodles are going out with the water. But her tests show that the noodles remaining in her bloodstream are still substantial.
We will see him again in a month and make a decision at that point about whether or not to go to Cytoxan. It is slightly more problematic for her because one of the other side effects of Cytoxan can be suppressed blood cell production resulting in anemia. With most kids, it’s not an issue, but because of Meri’s spherocytosis, she’s already starting with somewhat of a deficit.
But, we’ll cross that bridge if and when we need to. For today, we are just so relieved that we don’t have face choices that could have a lifetime impact on our girl! J