It has been almost a month since I posted. Why? Partially because of my own platter of stuff hat needs addressed, but also because I am concerned for my girl.

Since the last update Leia had a PET scan and although it showed the liver mets had decreased in size, it showed SUV uptake in numerous nodes in her chest and abdomen. The uptake showed by the stoma (We know they did not get clear margins), in her trasverse and a big uptake in the bowel on the right side pelvis area near a couple of suspicious lymph nodes. This was 2 weeks ago. Since then she had another treatment, which was harder for her from before, and they did a biopsy of one of the axillary nodes; however, the person who did the ultrasound guided biopsy totally screwed up and grabbed adipose tissue ( fat) instead of the lymph node. I am beyond aggravated, as is Leia. Our Oncologist, Dr. Lee, who we like, is at the mercy of radiology and surgeons, etc. getting back to him on the next step. Maybe a colonoscopy with a biopsy done through the colon wall. In the meantime, the waiting sucks.

We have discussed going to MD Anderson in Houston for a second opinion and to see what is available - but they are out of Network with Leia's HMO insurance plan and MD Anderson does not have financial aid for those out of state. We then checked with the Cancer center in Denver, which is connected to the NCCN as well, but they too are out of network.

As much as Leia hates the ostomy bag, she is really about quantity of life at this stage and will try to be patient until a reversal of the bag can be done.

Her insurance has given us two Dr names in network for 2nd opinions and I am researching both currently. In the meantime we are just waiting to hear back from Dr. Lee about the future tests to find out about the PET scan results. He said it could be infection (but Leia has not been sick, nor has had a fever - so that rules out that), inflammation (Leia religiously takes herbs, spices and natural supplements designed to keep inflammation down along with eating foods high in antioxidants.) Dr. Lee said at worse it could be Lymphoma - a rarity possibility. He is puzzled though.

I have my own thoughts and opinions and have been doing a ton of research. I think the waiting game is not healthy for mental status and it can cause more damage if something is not addressed in a timely manner if it needs be. I know God is ultimately in control and I just pray that He heals Leia. I worry about mutations changing even though I know I should not worry. Writing this post has been tough.

We are appreciative to those who continue to pray, those who share and those who give, no matter how much they donate. Just know we feel blessed for those out there following this cancer fiasco we find ourselves in. God bless- Leia's Mom, LaDonna

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