We usually think of being photogenic as looking good on camera. What do you call someone who looks good on scans?

Eli is having his MRI now and negotiated with the nurse when she would put in his IV for the contrast. During said negotiations, she mentioned how good he is at getting his MRIs. He talked her into waiting until later in the process to insert the IV.

Earlier this week, when we saw the doctor to go over his meds, which he started yesterday, Eli discussed with her his ideas of how to treat or beat his cancer. One idea is to prevent his tumors from growing faster than him. Another idea is to add Cyclophosphamide to his current meds. At some point prior to relapse, Eli planned to live long enough for a cure to be developed. I wonder what other creative ideas he’ll come up with?

As it turns out, the PET/CT report confirmed masses in his left foot and thigh, right arm, and right and left upper chest. I had wished that it would have stayed in his extremities, but I suppose spread beyond there was inevitable. At least we finally started treatment. We appreciate any prayers that the medication (brand name Stivarga) will have minimal side effects and maximum efficacy. We’re grateful that Bayer has a program through which we are able to get his medication for no cost. Because of the costs of developing new medications like Stivarga and bringing them to the relatively small pediatric market, these drugs can be very costly and since it is being used off label for Eli, there was very little chance of our insurance covering it.

Today’s MRI will enable our radiation oncologist to plan radiation treatment for, at least, the foot tumor(s). Eli and I would love to have more tumors radiated, but we’ll see what the doctor says about that. I know there isn’t a cure for his cancer at this point, but radiation was very effective at preventing relapse in the areas treated during frontline therapy, so it would be nice to approach radiation from a curative rather than palliative approach. If this medication can prevent new tumor formation for an extended time period, radiation can help extend quality and quantity of life.

At least that’s what I hope.

In the meantime, I get to wage another battle against some of the illogical, Covid-19 inspired restrictions that prevent both parents from being together with their child in hospital and hospital based clinic settings. There are some guidelines that make sense, but some cause more harm than good and reduce access to needed family and patient support. The sooner policy makers rethink their strategies and balance the needs of patients and their families with actual science based policies, the better. Many families are suffering more than they need to because of some of the more extreme restrictions that don’t do anything to actually reduce transmission of disease. This is not a war I have energy for, but if Eli and I want the support we need, what choice do I have?

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