Well, today I took the day off work because I kept tearing up and we had to go to the hospital. They tested Dylan's blood yesterday and this morning we got the news we can move forward with a stem cell harvest. Today we start GCSF injections at a high rate daily to boost his white blood cells for harvest. This will have the side effect of dropping his platelets significantly and will likely lead to platelet transfusions. It also means bruising and possible blood noses and any trauma to his head (eg: if he falls) then a CT scan will be necessary to ensure no bleeding. Having low platelets means your blood cannot clot and there is a bleeding risk. Another blow today was that I got a print out of the MIBG scan and it says that there is also a new spot in his arm...so that means one new in the skull and one new in the arm. I will copy part of the report below. His VMA urine markers say that it is lower than his previous tests 8, the HVA is not back yet. I am a little confused at this result as usually this marker raises when there is actively progressing disease. Anyway I am now scouring through all his records to try and interpret these Urine results better. Here is the MIBG scan Report:
Findings: MIBG-avid foci are again identified in the thoracolumbar spine, sacrum, pelvis and bilateral proximal femora. These foci are possibly minimally increased in extent/prominence since the prior study.
There is a new focus of MIBG uptake in the midline frontoparietal skull, suspicious for a new focus of disease. On correlation with the study of November 9, 2010, a focus in this location was present, suspicious for recurrence. There is a new, subtle, focus of MIBG uptake in the left proximal humerus.
IMPRESSION: Since January 14, 2011
1. Recurrent MIBG-avid focus right frontoparietal skull.
2. Stable to minimally increased osseous metastases involving the axial and appendicular skeleton.
3. New subtle MIBG focus in the left proximal humerus. Correlate with additional x-ray imaging for confirmation.
So the questionable spot in the skull seen in November last year has re-appeared and is confirmed as progression. January's scan did not show it. The Left arm is however new and this confirms my fears that we are definitely dealing with progression and yes, now it is hitting me like a ton of bricks. That sick sinking feeling in the pit of my stomach, unable to eat and shaking from the inside. I have slacked off on keeping his records up to date over the past year as things had stayed steady for so long. Now I am scrambling to get everything organized, fishing through piles of paper work to get everything in his medical diary so I can feel a bit more knowledgeable by reading through his records at a glance. The adrenaline is pumping so achieving this should be done by the end of the night. Thank you to all who have contacted me with prayers. It's just so hard for me because I have seen so many kids progress and pass, these images and memories have come flooding back, now it's our turn after all these years. What will happen? Will it stay stable again for years or will it progress at a rapid rate? That cloud over our heads has started to get darker, will it sprinkle or pour with rain?
