Scan Results

Hi Everyone, Julia's scan did not happen on June 12th as planned because of course she got sick again. She developed high fevers and an ear infection so doctors did not want to do the scan when she was not at her best. Therefore scan was rescheduled for June 26th. Results are in and the news, although not horrible, not great either. The scan is still showing enlarged nodes in her neck that are lighting on the PET scan. She has numerous other nodes in her armpits, around her liver, and her abdomen but these have minimal uptake on PET. The major concern is her neck. On a good note that previosly seen lung findings are completely gone. Our doctor has spoken to NY and at this time we really can't say the treatment worked completely but it does show some positives. The next step is Julia will have a biopsy of the nodes in her neck in the next couple weeks and we will wait for those results. NY would like to change donor cells, or even try and use Julia's own cells but those cells are not quite ready. We are running out of options and if we don't do more cell therapy the only other 2 options doctors have given us are; using a maintenance antibody which would leave Julia open to infection as the antibody wipes out her good and bad cells, or a maintenance chemo protocol where she would take oral chemo everyday but again this opens her upto neutropenia and risk of serious infectiion. Both of these options are not cure they are only maintenance to keep things at bay and my fear is that they will only work so long until the disease takes over. For now we will wait for biopsy and re group with doctors after results are in. Julia was admitted over the weekend for high fevers again and her counts are already on there way down. She is borderline needing a blood transfusion. As you can imagine this has been a long journey and despite doing everything and anything in our power to beat this deadly disease we feel like we are loosing the battle. I am a nervous wreck, completely disappointed, scared, and most of all feel like the walls are closing in on me. For those of you who know me well I tend to shut down and distance myself and I apologize for that. But please understand that I mean no disrespect to anyone and always appreciate the support but need to step away to be able to cry, be angry, feel sad, etc. But like always I will re gain my strength and be back soon to continue fighting. I thank you all for understanding and giving me some space. I will update you all when I have more information. Nadia