Update on Amelia


Amy went back to Mayo yesterday to see the oncologist (cancer doctor). The news was not good. I think I am in denial, or my heart is too heavy to process the emotions I'm having. Amelia's lump is harder, with more defined borders. Last week it was described as rubbery, more consistent with a "regular" swollen lymph node. This week it feels like a cancerous lymph node. The doctor said she thinks there is now about a 50% chance Amy has lymphoma. She wants Amy to finish out her course of antibiotics just in case it makes a difference. She also said there is still a small chance it is a viral infection, and is hoping the immune doctor we see on Friday will give us some other explanation. Amy is scheduled for surgery to remove several lymph nodes on the right side of her neck on June 29th. On June 28th, she will meet again with the oncology doctor, this time a team of doctors who will outline a possible course of treatment, and she will also meet with a surgical team who will come up with the best plan for her surgery, since she has had a notoriously difficult time with anesthesia in the past because of her brain abnormalities after her brain infection and brain damage in 2009.

The doctors expect to be able to perform the surgery using a drug that Amy has done well with in the past, Propofol. They are hoping to use a small incision about a 1/4 inch long, and use a vacuum tool to extract the numerous lymph nodes through the small incision. Then the lymph nodes will be frozen and examined by an oncology pathologist who will give us a definite diagnosis about lymphoma. Meanwhile, Amy's recovery should be fairly easy. The only complications they foresee is her response to the anesthetic. It will take up to a week to get the results back about whether or not it is cancer.

Meanwhile, Amy seems to be getting worse with each passing day. On Sunday, she attended church in her winter hat, an owl hat we bought her for Christmas, that garnered a lot of compliments and some funny looks. She is dressing in winter clothes because she is so cold, despite temperatures in the 80s. A woman at church knit her a prayer shawl, which she wears around the house and has been very thankful for because of the added warmth. She has four blankets on her bed at night and wears fleece footy pajamas and a winter hat, but still comes to our bed shivering with cold and begs for our down comforter. During the day, she takes multiple breaks for naps in my bed and sits on the porch on the swing while the other kids play. All of this is very uncharacteristic for the most active of our four children. She is obviously sick with something. We just don't know what yet. Trying not to borrow worry from tomorrow per the verse sufficient unto each day are the trials thereof (Matthew 6:34), we accept her latest quirks as added cuteness from an already quirky and enigmatic little girl who regularly charms us with her antics.

A quick look into lymphoma gives me a little more hope. It is likely that, if this is what Amy has, it is non-Hodgkin's lymphoma, because of her age. It also probably the aggressive form, because so far it looks like her bone marrow, liver and spleen are not involved even though she already has symptoms of lymph node enlargement (yeah!). The 5 year survival rate for this type of lymphoma is 63% and the 10 year survival rate is 51%. That is very similar to odds I was given for my cancer and it looks like I will be beating the 5 year odds.

We need your prayers, oh, we need your prayers. This is so overwhelming for Aaron and I. We both have had days of deep depression, so deep we are weeping for help from the Lord. As former pediatric bone marrow transplant nurses, we can list off dozens of favorite lymphoma patients, most of whom are dead, and this adds to the weight of our current situation. Even the doctors acknowledge this when I tell them about our background. They know that this adds to our anxiety - and at the same time makes us more knowledgeable. Please continue to lift up Amy's health - but also our whole family and the emotional ups and downs of this new journey we are on together as a family as we wait for surgery and diagnosis.


Please post this blog button all over the internet and rally prayer for my daughter as we face the uncertainty, grief and fear of the coming weeks.


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