6 Weeks Post MIBG Therapy

Emily making cupcakes with her cute apron from Sue

Tomorrow we have one week before Emily has scans to see if the MIBG Therapy was successful at CHOP. She is scheduled for MIBG Scan on Tuesday after the MIBG Injection on Monday with results from Dr. Mosse on Wednesday. Scanxiety is a severe understatement right now.

Emily had clinic today, and it was a long day at the clinic. However it was nice to be in the clinic and talk with the Joshua's while they were waiting for Meesha to have her bone marrow biopsy (http://www.caringbridge.org/visit/meeshajoshua) We had a feeling that she would probably need a blood transfusion come today since her hemoglobin had dropped so much prior, but we were hopeful that her platelets were coming back up on their own. However Saturday night, I looked over at Emily while she was sleeping and saw blood on her face. I freaked out and called Doug over. We saw some blood in her mouth, but wasn't sure where it was coming from, so we cleaned it out with a q-tip. Yesterday Doug saw a blood blister in her mouth on her tongue, but we thought maybe it was from her binky, we weren't really sure. During clinic we found that her hemoglobin had dropped considerably, so this will be her 3rd blood transfusion and we were shocked to find out that her platelets dropped from 31 to 6, so she was going to need platelets as well, 8th platelet transfusion since MIBG Therapy. Emily's ANC and WBC dropped a bit again, so we are still being very careful and making sure that Emily doesn't get sick or any germs.

Of course this brings a lot of concern for Doug and I worrying about her platelets recovering... I did bring this up with the doctor at CHOP by sending an email a couple of weeks ago. They emailed back with,
"The majority of patients treated with I-131-MIBG need frequent platelet transfusions following the therapy. Emily is now almost 4 weeks from her MIBG therapy and requiring platelet transfusions 1-2 times per week is not outside of the normal pattern. That being said, I hear and understand your concerns. Much will depend on Emily’s upcoming disease re-evaluations (as per the schedule below). We are always preparing for the “what ifs” so if indeed Emily’s MIBG scan in a few weeks shows that this therapy did not help we will have a plan for next recommended steps. If Emily’s scan is stable or better, it is likely that Dr. Mosse will recommend a second I-131-MIBG therapy and we would admit Emily to the hospital on 1/11/12 to receive that therapy on 1/12/12. We have many patients who go into a second MIBG therapy with low counts. We then re-infuse their stem cells about 10 days after completion of the therapy. If Emily is infused with her stem cells, yes that does limit some of her treatment options but is does not mean that she cannot receive any type of therapy for 6 weeks. Does all of this make sense? Please let me know if you have any additional questions or concerns."

So, at this point, we just wait to see how things go when she has clinic on Thursday and then how things are next week for scans. Right now we are working to locate a campground that is close by CHOP so that we are prepared should Emily be ready to do MIBG Therapy Round 2 and we have a place to go when she is done. This also helps with Brianna too, so we are hopeful to find a campground close by. If any of you know of campgrounds that are close by CHOP, open and relatively cheap, please email me. We also would prefer to be in our own area if we can because it leaves a lot less stress on all of us and also because of Emily's counts just to be on the safe side. Like I said if you know anything please let me know.

Otherwise Emily is doing great. She is eating well, playing and just enjoying no hospital overnight stays. We just continue to have clinic twice a week. We have noticed that Emily walks on her tiptoes and her walking has been affected by the radiation. Her hearing still seems to be fine and we really haven't noticed any other issues. She eats really well though, but not gaining any weight. She was 30 pounds when all of this started and today she is 27.8. For a 4 year old, Emily is very tiny and little, so we are always careful not to hurt her just when picking her up and things of that sort.

Send lots of love and prayers as we head into Philly next week for scans. Thank you so much for following our journey and keeping up with us as we charge on. Please give your kids hugs and kisses and tell them how much you love them.