Eden Philly Update

Eden's home from Philly. She seems to be handling things pretty good at this point. She will rescan in 4 weeks. If the results are positive or the same she will continue to travel back and forth to Philly for the low dose MIBG. This treatment can be repeated ever six weeks. So, in theory she could be in Philly on Halloween. We just need to stay positive. Eden is very high maintenance right now. Her counts are still recovering and we hope that this doesn't hit her to hard. Her bone marrow was clear from lasts weeks testing and the only spots she seems to have are the pelvic and thigh. Thanks for checking and We'll be talking to Dr. Nick and Dr. Mosse soon and hope to have additional information.

Not so good news

First of all, I wanted to apologize to everyone for not keeping up with the updates. We have been very busy at the hospital the last 3 to 4 weeks. Wednesday we got confirmation that the current study is not being as aggressive as we had hoped so Eden has officially relapsed. She has new growth in her left leg. This is not a new area for her; it has shown up on previous scans when her contamination level has been high. The plan is to run to Philadelphia for a low dose MIBG therapy treatment. This treatment has been very successful for Eden. Now the problem with repeating this treatment will be that she will build up a resistance to repeated drugs. But, I’m hoping that this will work to bring her back into a good standing. The last few weeks Eden has been though many transfusions, scans and the surgical bone marrow aspiration as of yesterday. In the midst of all this she still has managed to make a few days of school and continued home tutoring. Her spirits have been good, except during the evenings and late at night she has had sever pain that were dealing with. During those times she has just been very uncomfortable. But for the rest of the time she’s typical Eden. As far as the Kieran_5 drug antiangio study she has completed 6 full weeks of treatment and is off the medication as of yesterday. The plan is to put her back on it after we verify counts returning from the MIBG Therapy so we might just have a two week break from those medications.

Clinic

Eden had a long day at clinic. Mama Hope spent the day with Eden doing counts and Red Blood. Eden did get lucky and got to spend the day with her friend Hannah. That always makes her day better to buddy up with someone. All in all her counts are taking a big hit and after the MIGB scan next week we my have to discuss additional or different treatment options. Thank you to Hannah's mom for allowing the two of them to play together.

1st Week of school pics

Eden had a pretty good week at school. She still had two days at clinic for transfusions but overall things went well.