Family health update

We are ecstactic to finally have good news to report on Amelia's brain! Her latest scan showed stable demyelination, meaning it hasn't gotten any worse since the last scan in mid-November, and decreased leptomeningeal enhancement, which means the inflammation from infection is receding with the steroid treatment. She will remain on steroids through December and January, which can be dangerous to other body organs, so keep her overall health in your prayers. She also has a very low lymphocyte count, which indicates an immune deficiency. She will be undergoing more testing for that on December 8, and they may start treatment while waiting until after she is off steroids to do the rest of the testing that needs to be done to determine the cause. Her lab tests for a handful of fatal diseases, like adrenoleukodystrophy, Vanishing White Matter Disease, metachromatic leukodystrophy, and ataxia telangiectasia syndrome, were all negative. This is a huge load off our minds at this point!

I myself continue to have health difficulties. My kidney infection is resolving, and I now have a hemmorhagic growth on my left ovary, near the site of the ectopic pregnancy. It is either an abcess or a cyst. If it is a cyst, it should get better in the next day. Otherwise, I will need surgery to remove it, and probably the rest of my ovary, as it dwarfs my ovary at this point. That means early onset menopause added to the craziness we're already experiencing! In addition to all of this, my next radioactive iodine scan was scheduled for the week of December 14-18. I will receive my dose on December 16 in the afternoon, and need to be away from my family until that Sunday. I am hoping all these other issues are resolved by then! There was a lump found by my doctor in my next, where my thyroid used to be. I have been feeling this lump for about 3 months now, so I am relieved he finally noticed it with his fingers. It is easier to notice changes when you so intimately know the geography of your own body with your fingers. He thinks it may be scar tissue, but it could also be the nodule in the thyroid bed that has looked suspicious since my very first ultrasound post-surgery last summer. If it is cancer, I need more radioactive iodine, but that will be postponed until after the holidays, extending the craziness into next year, but allowing me to spend Christmas with my loved ones.

So, in short:
  • Amelia's stable brain MRI
  • Amelia's negative lab test results - we get to keep her for a long time!
  • Easy recovery from sedation for MRI
  • Healing of my kidneys
Keep PRAYING for
  • Ovarian mass & wisdom for both doctors & I as we move toward surgery
  • Sparing of my ovary if surgery is required
  • Relief of pain
  • No more systemic infections if this is an abcess
  • Recovery for Amelia's brain so she can quickly get off steroids
  • Stamina through this trial: more doctors appointments next week, the schedule is crazy!
  • Safety & comfort for all during my iodine scan on the 14th-19th of December
  • Quick reunion possible on December 20
  • No new cancer found on the scan!