First, I want to say that Ellie is one of the most amazing 3 1/2 half year olds ever!! Yes, I am biased, but seriously what she went through today was no fun, and she wasn't feeling well, and she still did all of it with very minor protesting and an understanding that hopefully all the tests, doctors, and running around today would make her tummy feel better.
Yesterday (Thursday) Ellie had her normal labs and chemo scheduled. I met with her oncologist and her labs came back and showed that she was neutropenic with an ANC of only 200. It was decided that all chemo would be held and we would re-check her labs on Monday. They also tested her blood for the adenovirus which they told me the results wouldn't be back for 48 hours (more on that shortly).
So today our morning started off with an 8:30 check in at Nuclear Medicine for a gastric emptying study. Ellie had to be NPO (nothing to eat or drink) as of the night before. We were instructed to bring egg beaters, 2 slices of white bread, and 2 tablespoons of jam which she happily packed this morning in her bright pink horse lunch box. We had talked about the fact that this was going to be a long day and that she was going to eat food and we would get to see it in her tummy, which she thought sounded neat.
We arrived and they asked us to wait in the waiting room. A few minutes later they called me back up and told me the insurance hadn't approved the gastric emptying study. We have an HMO that thankfully generally approves necessary tests. Well, it turns out the GI insurance coordinator forgot to send the approval off and they told me they couldn't start the study until they had the approval or I could pay $3,000.00 before they would start the test. At this point, Ellie started to get really hungry and I was getting more and more upset with the situation. I finally begged the guy to start the test and I would put it on my credit card if it wasn't straightened out by the time I left (the test is over 4 hours long). Thankfully they took pity on us (after a 1 1/2 hour wait) and took us in and said they would continue to work on the insurance aspect.
So into the room we went and handed them our food. They came back with the equivalent of 2 scrambled eggs with some radioactive something put in it and a piece of toast and the jam. The tech said it would be great for her to eat all of it, but most adults can't so if she couldn't finish it that was okay. Well, Ellie was hungry, she hadn't really wanted dinner the night before and it was now 10:00am and she ate it all down in 5 minutes. And then the scan began. She had to lay completely still for 30 minutes for the first scan. The machine is similar looking to an MRI machine and the lower the top to within 6-8 inches above her head. Thankfully they had a TV with videos she could watch. After the first 30 minute scan we waited another 30 minutes and then they did another 5 minute scan. Then it was 3 more 5 minute scans every hour for the next 3 hours.
Now, it would have been nice to relax during those in between times, but no thats not the way we do things. We awoke this morning to an email from her primary oncologist that was sent in the middle of the night letting us know that she had tested positive for the adenovirus and that the amount in her blood was moderately high and we needed to be seen by the infectious disease docs today too. Her stool had tested positive for adenovirus over the weekend, but when we spoke with oncology on Monday they weren't concerned because this is a common virus and it sheds in your stool for up to 18 months after having it.
So, we first had to rush down from Nuclear Medicine which is in the adult part of the hospital back to LPCH (about a 7-10 min walk) and try to get a chest x-ray done because the adenovirus can cause respiratory issues (though she hasn't had those symptoms). Of course, we show up at radiology and the x-ray machine was down. So back to Nuclear Medicine for the next scan, and then back to x-ray again for the chest x-ray. Then back to Nuclear Medicine for another scan and then we went to clinic to meet with the Infectious Disease doctors.
Both Jeff and I were highly impressed with the infectious disease doctors who had great bedside manner and seemed to really know their stuff. There is a medication they can give to help with adenovirus but the side effects can be quite significant. You have to be admitted for the medication, and it has to be given with fluids and additional meds that protect the kidneys because it can cause damage to the kidneys. After going through all of the options, all of her doctors (oncology, GI, and infectious disease) are in agreement that we are going to wait and see if the amount in her blood is trending down on Monday when we get labs done again. So our next question was whether or not all of her pain and vomiting is from the adenovirus or something else.
So, back we went for the final scan. They had told us initially that the test could be as quick as 2 hours or as long as 4. At the 2 hour mark they said she would be there for the full four hours based on how she was progressing. So, we got the last scan in, stopped at the cafeteria to get some food to go (by now it was 3pm) and all she had to eat was the egg beaters and toast, and we were off to meet with her GI doc. GI is across the street from the hospital so we definitely were getting our exercise today. Thankfully I had thrown the stroller in the car this morning, which we almost never use, and Jeff had his knee walker.
After a long wait for the GI doc (we had missed our scheduled appointment due to the test running so long because of the insurance mishap) we met with her GI doc. And he had the results of her gastric emptying scan...at hour 4 she still had over 50% of the radioactive eggs in her little body. He said that over 50% of the food should have been cleared by the end of hour 1! The name for this condition is gastroparesis. So, somewhat of a sigh of relief as now her doctors are fairly confident that this is what has been causing her to throw up, have so much stomach pain, and caused her counts to drop this week. While they said it won't get better overnight, there are meds they can give her to help her gut motility. The first one we will try is the safest, it is a low dose of erythromycin. They said it could take as long as 9 months for her gut to be back to normal, but in many cases that time is a lot shorter. They also are not sure what part of the equation the adenovirus is playing in her feeling unwell, so we will hopefully have a better idea on that next week as she will be getting likely several sets of labs.
By the time we left the hospital it was almost 6 pm. All day Ellie had been telling me when she was done with her scans she wanted a brioche roll from a bakery nearby, to take chocolate sprinkles cupcakes home for her and Timmy, and to ride the mechanical horse at the shopping center across the street. Of course, despite being exhausted, I couldn't say no and across the street we went for the roll, the cupcakes, and the small metal horse ride.
When everything started to go wrong with the insurance this morning, Jeff was able to find someone to teach his classes and come to the hospital with us and I was so thankful he was there!! He is my support and rock and made it possible to get through this day. We are hopeful this new plan will bring comfort and relief from pain soon for Ellie. We thank everyone who has been praying for us and supporting us with meals for the last couple of weeks. I will leave you with two pictures. One is Ellie during one of her scans and the other is her riding the mechanical horse.
Polly
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