This set of scans are the elephant in the room in my head. Not scanxiety (as it is known in the cancer parent world) but more of an aching hopefulness. Her last set of scans were a little off as far as days in between. If you can follow, it gets a little crazy and medical but she has scans every 2 cycles. When she started Hu3f8 they did baseline scans, bone marrow aspiartions and biopsies and urine tests. These are all done with scans each time. She had baseline, two cycles and then had her next scans the week prior to starting cycle 3. She did cycle 3 and 4 and the immediate week after cycle 4 she had scans. The scans from baseline to cycle 2 showed great improvement. The scans from cycle 2 post cycle four the timing of the second scans was way less time. This showed little but clinically unremarkable improvement. We were home for almost 8 weeks post cycle 5 and are having scans again because we were able to stay longer so it is an extra but worth it. I am really hoping with everything in my power that this shows vast improvement. It has to. Dr Kushner told me after her last scan that because the largest portion of tumor is completely entangled in her vertabrae and impossible to surgically remove but it continues to glow like the sun in that area that Penelope may just be a “stable kid”. Stable isn’t an option that sits well with me. I have gone through the rigamarole with insurance to get approved for a consulation at Children’s Hospital of Philadelphia (CHOP) as well as Texas Children’s. They both have neuroblastoma research going on and if our next steps her at MSKCC are not hopeful then we move on.
I am so tired of the constant waiting for improvement. In the last seven months it’s all been stable and one time got better then went back to stable. I want more progress. I want a happy. I lost my job, I have no insurance, I do what ANY parent would do for their children and it has cost me a lot. I have been tallying our costs so far this trip at we are at $249. We are on day two. I even check an extra bag to check with non-perishables like cereal, bagels, bread, snacks, juice boxes. I am frugal. It’s such a cluster and very hard on all of us.
I should know some kind of preliminary results tomorrow or Friday or even Monday and will update everyone. Time to put our girl on high and believe in improvement!
Thank you for all of your love and support. You really have no idea how much strentgh it gives me. To all the strangers that have become not only fast friends but family, thank you for your selflessness and generosity.