And the heavens smile upon us
Eden and I showed up this morning at 8:30 for her MiBG and then went straight up to clinic to start her new meds. (ABT-751) We were here about 5 min and Dr. Mosse came in to go over everything about it with me. BUT first she had some very good news for me. Eden's MiBG was completely clear!!!! We are now NED once again!! If you remember she had her MiBG done about 3 weeks ago for the final phase of the protocol for the MiBG therapy she did in Aug and the results from that were very good but she still had disease in her belly area. Dr. Mosse said that in some cases the MiBG continues to work after the 6 week period and for Eden that is the case. As you know we have been very worried that Eden has been off treatment for so long because of the infection and low counts so if anything I was expecting the scan to be worse then the last and never did I imagine it would be better!!!! Dr. Mosse is very pleased and thinks Eden could not be starting the ABT at a better time.
Here is basically what we talked about today. This drug is a form of Chemo but it works different then the chemo in that it only seeks out NB cells to kill and it does not effect any other cells........Red and White cells, Platelets, Hair follicles............ So it is a wonderful drug to give children a good quality of life! She will take 7 pills a day for 7 days and then nothing for 14 days and then all over again and again and again for as long as the meds work. There are 3 different ways this can go. Worst case- She will not be able to tolerate the ABT and will have to stop taking it right away. Worst Case #2- she will be able to tolerate the ABT but her disease will progress on it and if that happens we will have to stop this treatment and go to something else. Best Case- She will tolerate the ABT and it will keep the Disease quite for years! She has seen children take this for up to 3 years at which point they must be removed from it. Of course that is getting way way ahead of ourselves but a mom can wish, right?? Getting back here has been our goal since the NB showed it ugly face again in March but we have always known she will have to stay on some form of treatment forever because everytime it comes back it will probably be worse then the last. Dr. Mosse was very positive about the fact that we know the MiBG therapy works for her and it is always an option in the future. We are not going to be inpatient as expected because the hospital is so full. (The thought of a hospital of this size being FULL of sick children breaks my heart) So we are going to do the PK study outpatient which is just fine by me........ Not that I don't LOVE sleeping on a Hard, uncomfortable couch while getting woke up 30 times a night by nurses..... So we will come to the day hospital from 12 to 6 everyday and they will draw blood every hour for those 6 hours watching the level of ABT in her system. We will be leaving on Friday to head back home!