May 28, 2017 Latest post:
Apr 24, 2019
Welcome to our CaringBridge website. This is a journal of our adventure fighting stage 3/4 Wilms tumor and extensive thrombis tumor. Not a donation page. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
We also hope some of this info will help with any early detection should your child be displaying these signs.
It all began with a tummy ache the weekend before her big sis' 9th birthday. Worried that it may be appendicitis, Danielle took Emma over to Quick Care on Sunday, May 7th which is the day Emma began vomiting. At no point did she ever have a fever. Just tummy pain all over, very lethargic, only wanting to lay down and sleep, and throwing up. She had no interest in food either.
This continued for a couple more days upon which we called the doctor and were told to watch for dehydration. They believed it was a stomach bug. Later that week Emma seemed to be rallying and on Friday was no longer throwing up and was eating small portions, yet still very tired. That weekend during a trip to see family it began all over again. Nausea and vomiting, although not as bad as the week prior and she was eating and wanted to eat. I recall laying in bed with her and the poor thing just wanted me to take her to the hotel swimming pool. She was so bummed.
Monday, May 15th, about one week after it started, we went to the doctor but nothing was found. The doctor said it might be a possible gag or acid reflux that was causing the continued vomiting and recommended Mylanta. This actually seemed to work a bit as Emma's appetite came back and the vomiting seemed to be less frequent. A few days after that (Wed) Emma sort of appeared bloated in her belly. The doctor said that can happen after long bouts of stomach trouble. The next day it wasn't any better and so I made another appointment at the pediatrician for that Saturday before Yale's birthday party (May 20th).
Blood test and x rays were run. We got a call just before the party started that liver enzymes were off and fluid was on the right lung. We left Yale's party and raced to the ER at Rush Copley which after some tests of their own agreed with the pediatrician and transferred us to Lurie's Children's Hospital in Chicago. When we first arrived to the ER at Lurie's a few different specialists were on hand since they weren't quite sure what was going on inside Emma. They initially concluded Emma was having liver failure. However, after several more scans one of the ER doctors asked to see us in private, which is where we were told there was a tumor on Emma's left kidney, cutting off blood flow to her liver.
Yale turned 3 today (May 27th), we have been at Lurie's for a full week now, and the plot has thickened considerably. Emma has fluid on her right lung which is still being drained, her abdomen is still distended and full of fluid (you can physically see her side is bulging from the tumor), her lower body is swollen due to lack of blood flow, there are 2 tumors on her left kidney, and a thrombosis (blood clot possibly with cancer cells inside) extending from her kidney and up into the left atrium of her heart. The thrombosis is the biggest concern and it is blocking blood flow from exiting her liver so it is backing up and reversing flow. Her body had adapted somehow by rerouting this necessary bloodflow back to the heart through other vessels which have enlarged to do this job. Emma's ammonia levels were crazy high at 110. A normal high level is 35 max. This caused her to be very uncharacteristically mean and very sluggish. However, her levels are now around that 35 mark, although they still tend to spike a little once in awhile. The doctors are working on the assumption that the cancer is Wilms tumor, but can't be sure until a biopsy is done, which can't be done at this time because of the thrombosis.
The plan of attack is blood thinners to reduce the clot and chemo to shrink the tumors. After that, surgery to remove the filth. We are now in Oncology and out of the ICU, where we spent the last week. She now has a low grade fever at 100.1 and they are discussing a procedure to drain some of the belly fluid and test it for infection. The lung fluid checked out ok. Emma is grumpy and has every reason to be. She is uncomfortable and in pain still. She doesn't even want to color or get out of bed, other than a commode break. She is nauseas from the chemo and doesn't eat much. I would give anything to switch places with her. I miss my sassy little lady so much. I miss her fun outfits. I miss her just swinging alone out back and waving to me in the kitchen window. I miss that toothless smile and that giggle when I'd tickle her. She is so ticklish.