Today's clinic appointment was uneventful, just like we like them. We were there for a while because he got his IVIG treatment. Because it is a blood product they infuse it over hours in case of a reaction. It went well, no problems. His counts are:

Platelets 192 (normal)
Hemoglobin 11.2 (normal)
ANC 5426 (normal)

The ANC is way higher than they like to see....but we increased the methotrexate two weeks ago, so now we wait to see if the counts stay high or he may be getting ready to fight some type of infection. (Don't you just love how exact medicine is??!!) He could have also gotten a "boost" in his counts from the steroids he finished last week, who knows? We will wait another month (6 weeks in total) and then we will probably increase some more meds. The problem is we have to watch for any other side effects as we increase these.

The study that Eli is on has been suspended due to older children developing something called AVN due to the steroid dexamethasone. This isn't very common in children Eli's age, but not unheard of. I asked the doc if we should get a bone scan since we were on the arm of the study with a full 21 day cycle of dexamethasone. She said she would talk to the "team" and get back to me. The thing is that they know the dex works to help the chemo, so it is a good thing, but this AVN effects all of the joints and bones in the body and basically eats them away sorta. Not a good thing to have....but I guess none of the side effects are, huh? So we will wait and see on that one.

We also asked for a consult with nuerology in a few months. Eli is getting ready to start his last cycle of 2 LP's every 3 months to 1LP every 3 months and we have talked about taking him off of the anti-siezure med we have had him on since last year's seizure. But as John and I talked about it, we realized that we really hadn't asked a whole lot of questions regarding his lesions, seizure, etc. at the time. We were barely holding our heads above water. Now we think we should really go into a real conversation about how this may affect Eli's learning, etc. See what the docs can tell us based on the MRI's he has had over the past year.

Things here continue to go really well. We saw the one of the fellows at the clinic today that we haven't seen since Christmas and she really didn't recognize Eli at first....he just looks so great.

Thanks for checking in.

Maria

I am thankful for our wonderful doctors and nurses that take such good care of Eli.