The details of the procedure were not so good.
Unfortunately she woke up screaming mad, the combination of drugs that they used for anaesthetic did not leave her in a happy state. Plus they used tape over her eyes, (we learned during radiation that she is quite sensitive to the medical tape on her skin) but we have never seen them use tape for MRIs so we didn’t know to request NOT to use it. So her eyes were all puffed with red squares- the solid hour of screaming didn’t help either I’m sure.
The real news of Charlottes MRI was not good either.
The area in question, the "thickening" that we saw four weeks ago has grown. It is low in the back area of her surgical cavity. Our oncologist says it is clearly cancerous. There is a second area showing now too, with a nickel sized tumour growing near the top of the surgical cavity.
What now, we are wondering? Both areas of reoccurrence are within the original field of radiation. They have given her the highest dose of radiation possible to that area already; that means that radiation did not help. She has had the highest doses of chemo, the protocol best matched for her cancer. Chemo has left her system fragile and there is not much more they want to give her as it would have too high of risks. We have tried naturopathic medicine on the side (despite wincing from our conventional doctors when we mentioned it.) I don’t think that we have the time that is required for anything from the naturopathic field. We are continuously praying for a miracle that is all that seems left for us to do.
Our doctor is going to look into any trials and studies that we might be eligible for; it does not look like there were any really promising ones for Charlotte’s case. She is in contact with St Jude’s in Memphis and Sick Kids Hospital in Toronto to see if there is anything available. The main trial that she suggested we look at is only to test the toxicity level for children of a new chemo. This chemo has not been proven to do anything for PNET tumours in kids but has shown to slow tumour growth in the lab. – But there could always be an unexpected result. It looks like we will be given a choice of quality vs. quantity of life. We have to decide if we want to chance making her sick and tired to try it out. Even if it does affect the tumour, our doctor warned it would not be enough to cure her.
Charlotte’s oncologist told us that she does not have anything else to try that she would realistically expect to cure Charlotte. She asked about what we have at home for palliative care options. When we asked what she expected for our time together, if we did not do any more treatments, she had no answer, not a hint. It sounded like one day Charlotte will just start showing symptoms again, or start having seizures. Weeks? Months? We dont know.
I would like to tell you that although all this is going on Charlotte continues to feel well. She is happy and outwardly healthy. She was so happy to see Yolanda when we got home, the two of them scurried off to show each other the new pictures and stickers that they had done as soon as we got in the door. They were singing away upstairs until we had to break up the party for bedtime. We have not yet told Yolanda what we were told in Calgary. She is a smart girl and she sees everything that is going on but we are not going to tell her everything just yet.
Here we are once again turned upside down. Please hold us up in your prayers as we are not sure how to hold ourselves up anymore.