Update from Richard
I apologize for not sending more frequent updates. There is nothing urgent, just a conglomoration of things I am frequently asked about.
First, we have had a misconception about the nature of the three stages of Lydia’s treatment. We had thought each stage would be easier than the one that preceeded it. She is in the beginning of stage two: consolidation / intensification. As the word “intensification” implies, this is not actually an easier treatment stage. She has been going to the hospital twice a week, and getting a lumbar puncture every week. This is also the stage of treatment associated with the most risk. Her immune system will be compromised for a lengthy period of time. This stage lasts 6 months. Not whining, just pray for strength and wisdom in decision making.
Her hair has started to shed a little bit. 😔
I was informed by our billing specialist at Medishare that, despite the fact that Arnold Palmer shows up as in-network on their website, it is not actually in-network. We were further informed that we would be liable for 20% of the hospital bills over and above our normal annual household portion if we don’t change hospitals for treatment.
I wrote a strongly worded e-mail last Friday, and got a call from Lydia’s nurse care specialist at Medishare on Monday. She encouraged us to continue with care at Arnold Palmer and Assured me she was “confident we will find a resolution.”
This was encouraging, but as you can imagine, doesn’t offer the same assurance that a “we’ve worked it all out” would/will. Please pray that this situation will be resolved quickly and favorably.
Finally, to hopefully clear up a common misunderstanding…
The genetic issue that had been discovered, and could have potentially complicated treatment, was IKZF1 gene deletion. This is the issue that we have now been told shouldn’t be a problem.
The genetic issue that MIGHT be pre-existing and/or hereditary is a TP53 gene mutation. This is still an open question. She will need to go to a geneticist to determine if this is something the cancer was creating or if it was a pre-existing genetic condition. That is low priority, however, and will be handled in the coming months.
I’m sorry for the long read.
Thank you all a million times over for everything you have done.
We could still use all the prayers you can spare.
Until next time,
The Jacquets
