Am I #smarterthana4yearold ?

Over the last couple weeks, Eli has done two chemotherapy infusions and five high dose radiation treatments. Now he’s off pain killers and visible tumors are shrinking. His leg is still swollen more than “normal” (his new normal involves chronic leg and foot edema due to damage from past radiation treatments).

This neck tumor was growing so fast, before we did chemo and radiation. I hope it continues to shrink.

Because of the constriction of the blood vessels leading to his left leg, he is at higher risk of blood clots, so he is on a prophylactic blood thinner. This involves twice daily shots, administered by yours truly. I am learning to remember to bring supplies for the injections when we are out and about (don’t ask about #momfails) and we use bacon bandaids, which happen to work well with his sensitive skin (thank you Jen and Kerri!).

Who knew that the novelty bandaids from Zurchers would be better for sensitive skin than the brand name?

After several conversations with the doctor and consulting with another doctor, we are not doing any other treatment while we wait for the clinical trial. It is felt that the non-chemo treatment I had wanted to do is just too risky right now, so we’re praying and hoping that the treatments we’ve done will be enough to get the cancer small enough that it makes sense to do the Car T clinical trial.

Eli tends to be more tired than he used to be, but he surprises me still.

We will do a PET/CT in a couple weeks to see what the cancer is doing. Then we decide whether to move forward with the trial.

In the meantime, I’ve been very busy with paperwork related to medical bills and more paperwork related to the clinical trial and all that entails, traveling to another state to receive care: applications for housing, etc. Also, the IRS disagreed with our tax software’s calculations and recalculated our refund, then told us we should use tax software so we don’t miscalculate in the future. I think the IRS miscalculated the members of our household. My youngest can count higher than that–maybe they should hire her?


Anyway, I turned the matter over to the tax software accountant/lawyer types to deal with, but I still had to send lots of extra documents, as if I didn’t have enough to do right now.

Maybe I should be grateful it’s not an audit? Maybe I should be glad they only lost half of our dependents? Even I have never lost that many of my kids at once. All I know is that I’ve been doing my taxes since I was 16 and never had any problems before. That’s a better track record than the IRS has. I think I’ll just feel vindicated when they give us back the rest of what they owe us.

This is my efforts at figuring out what I actually owe the U of U for physician services. Ella helped print out the EOBs and match them with the U of U statements going back to last October. I think we’re going to have to put this all in a spreadsheet. It turns out they were applying my payments to newer rather than older bills, so they threatened to put a lien on our tax return (good luck with getting any of the money since the IRS is trying to keep it all). Maybe they could use the skills of my youngest child more than the IRS?

Yeah, I don’t exactly relish posting the nitty gritty on such a public forum, but I think these issues highlight the sort of things one has to deal with while dealing with cancer or any ongoing major medical problems. I used to think that, if I’m very careful, getting all requisite preauthorizations, match EOBs from my insurance with all bills from providers and pay what we owe, then we would avoid issues with medical bills. The truth is, medical providers and facilities are just as good as the IRS at creating problems that never would have existed otherwise and can’t do math as well as a four year old. It’s like they make it complicated on purpose lest we get bored without the need to puzzle over the bills. How else would I stay entertained?

3 thoughts on “Am I #smarterthana4yearold ?

  1. Alain in France

    The courage and resilience of this young lad continues to amaze me.
    Most adults -myself included- would probably be morally destroyed when in the same situation.
    This last picture of him carrying his young sister with a large smile means a lot.
    Such a nice person. Keep fighting, Eli.
    I really from the deepest of my heart hope that this clinical trial will turn out to be a major breakthrough and buy him years at least. Looking forward to some good news.
    I wish you courage and success dealing with all the administrative and financial hassle that add up to your worries. You live in a country that doesn’t make things easy when one gets sick.
    Sending all my positive thoughts.

    Liked by 1 person

    1. I, too, hope the clinical trial will give him years of cancer free time. Thank you for your continued good wishes. His older sister used that picture of Eli and Tabitha to draw a sketch. I will be including that once I get a picture of it.


  2. Pingback: Dear Eli – Eli The Boss

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