The doctors at Sloan are a little concerned that Lauren is developing a reaction to the gm-csf, (which are the shots that boost her white blood cells that she gets before she start each round and also the 2 hr infusion she gets each day before the 3F8 infusion) This time when she got the shots it left a tiny purple bruise at each injection site for 2 weeks. Then when she got the IV dose during the round she started retaining fluid (she looked like a little beach ball) and breaking out in hives on her face (not to be confused with the hives she gets with the actual antibody infusion). Benadryl seemed to help. They said they would watch her next round and would stop the gm-csf if needed. They hope the reaction doesn't get any worse because they would like her to get at least 4 rounds with it. So we'll see what happens.
Lauren has been doing pretty well since they got home. She had a great time at her Dad's surprise birthday party on Saturday. She got to see a lot of family and friends that she hasn't seen in quite a while. It was great to watch her dancing and running around playing with the other kids. She was like a little Energizer Bunny..... kept going and going............
She has been having some pretty bad mood swings and some diarrhea as her body withdraws from all the narcotics she had over the past two weeks. She is still not eating real well (though she did for Grandma and I at the party! ). We hope that will pick up over this next week but it may not since she also started Accutane on Monday. She did vomit once that first day but Deb isn't sure if it was due to the meds or the entire bowl of raspberries she had consumed. If it continues we may have to lower the dosage.
Here is Lauren's upcoming schedule:
Monday 3/19 - Valerie Center for checkup and bloodwork (to check counts and
see how she's handling the Accutane (it can be hard on the liver)
Monday 3/26 - HAMA test drawn and sent to Sloan (results on Wed)
- Hearing test (still at risk for hearing loss for up to 3 years post chemo)
Friday 3/30 - eye dr appt (checkup on the strabissmus)
Monday 4/2 - off to Sloan for round 3 (as long as the HAMA is negative)
Lauren also needs to be followed by an orthopedic surgeon. Because of the surgery on her spine as well as the radiation to that area she is at a greater risk of developing scoliosis (curving of the spine) as she grows. If Deb can fit in an appt, she'll be seeing this doctor too before heading back for round 3 of antibodies.
Lauren's PHA test came back.... This is a test to see how close to normal her immune system is. The results were 42,000 and normal is 166,000 - 348000
so I guess Lauren's about 1/4 of the way there.
Loves and Hugs Lauren.....Aunt Nean will see you in the morning! Tell Timmy he better hide that box of Fruity Pebbles he doesn't think I know about!!! :o)
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