Rourke and Eden are back from Philly. Eden is feeling fine! Unfortunately her Scan results were not fine. They found 6 new spot on her MiGB Scan: Skull, shoulder, hip and knee. When you say all of that out loud it sounds like a massive progression of Disease but after a 45 minute Phone conversation with Dr. Mosse she assured me that the progression is minimal but progression is progression and it’s never good! I have attached the MiBG scan for anyone who wants to look at it. It has taken me years to be able to completely understand how to read it but the arrows mark the way. Most of the spots are very very light and the worst is in the hip. Everything else you see lighting up.. Abdomen, cheeks and pelvis is normal uptake of the MiBG. One upside is Eden’s Bone Marrow was completely clean and we will take what we can get! Dr. Mosse and Dr. Maris spoke in length about Eden today before coming to us and feel that a trial called Modulation of Intensive Melphalan (L-PAM) by Buthionine Sulfoximine (BSO) With Autologous Stem Cell Support
is what is in her best interest at this time. I realize this is probably a lot of words most of you don’t understand but here is the breakdown of what it all means. Melphalan is a Chemo drug known to work very well on Neuroblastoma. Cancer Cells contain a Chemical called Glutathione which can protect the Cells from Anticancer drugs (Chemo) . BSO is designed to remove Glutathione from Cells therefore allowing the Melphalan to dig deep and destroy the Cancer Cells. As we know Chemo not only kills Cancer cells but also normal fast growing Cells such as Stem Cells which produce Red Blood cells, Platelets and White Blood Cells which is why the Stem Cell Rescue is required as part of this trial. She will also start GCSF right away for White Cells. Fortunately Eden handles the nightly shots very well. She will in fact lose her hair once again but I just got off the phone with her and she assured me she doesn’t mind. In fact when I told her how much I love her bald little head she replied with “I love my bald little head too” She is truly just the bravest little girl I have ever met!
I have grilled Dr. Mosse regarding the trial and why this is what is best for her now and she stated that they have seen some very good results from this trail and it will only be open for so long. The idea is that we try it and if we don’t see good results then Dr. Mosse and Dr. Maris have the ability to put her right into another trial based on patient need. More then likely that would be MiBG Therapy and if it does work we can move on to the antibody study designed to hold disease dormant and save the MiBG study for later use. There is no way of ever knowing what will and wont work so we just try and do our best to stay one step again of the NB and hope and pray we are doing the right thing.
They are trying to get Eden scheduled to start the Trial on the 23rd of this month and she will be there for 5 days.
Rourke and I both feel very lucky to have such wonderful family and friends surrounding us and helping us deal with this situation and I have no idea what we would do without them.
That is all of the information I have for now and we will update you all as soon as we know more. Please take comfort in the fact that Eden is feeling wonderful and handling all of this likes a champ!