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Jul 2, 2017 Latest post:
Nov 20, 2018
On Thursday, June 29th, we received the devastating news that our daughter Harper was being diagnosed with Rhabdomyosarcoma. This is a type of cancer that is a tumor of the muscles that are attached to bones.
On Thursday, May 25th we noticed Harper's right cheek was a little swollen after coming in from outside. We thought maybe it was a bug bite and gave her some benedryll. After seeing was no improvement the next morning, we took her to urgent care in Ankeny. They thought it could be a bacterial infection, viral infection or even mumps (although she had been vaccinated). So, blood was drawn to test for mumps and we were also given an antibiotic in case it was bacterial. The good thing was it didn't hurt and she didn't complain about it.
By the next week we could tell her cheek had gotten more swollen so we took her back to our pediatrician. They drew more blood and everything came back fine. But we were sent to the ENT that day to get an evaluation and an ultrasound. We were told it was probably a viral infection and the ultrasound didn't show anything alarming. Unfortunately we had to wait for the viral infection to run it's course which could be numerous weeks. This was frustrating to hear, but in the grand scheme of things, we could deal with it.
We were back in the ENT office the following week to do a Channel 13 news story on using Virtual Reality goggles. When Harper had her original ultrasound she had gotten to use the goggles! She had done so well that they asked her to come back and showcase how awesome they were. When we did so, I pointed out to the ENT that it had gotten bigger again. Again I was reassured that it was a viral infection (not mumps) and we just have to wait it out.
This is when things started to change a little bit. Up until this point her cheek hadn't hurt. Now, she was starting to get uncomfortable at night - waking up multiple times and thrashing around saying her cheek hurt. We got a steroid to see if that would help start the swelling decrease. It didn't really do anything, and that concerned us. So, we again called the ENT to let them know of the pain and let them know we needed to do something different...it was time to do more imaging. On Thursday, June 22nd we saw another ENT within the same group. He felt it was a cyst and not a viral infection. He ordered an MRI for the next day, Friday the 23rd.
We had planned to go to Kansas City for a weekend away, but first the MRI had to be completed. Harper was a rock star! No sedation was needed for her - she endured the entire MRI for 45-60 minutes and held completely still. For being 5, I'd say that's pretty good!!!! Once she was done we jumped in the car to head to Kansas City. On the drive we got a scary phone call from the ENT telling us that it was not a cyst, but a tumor. But, they didn't know if it was malignant or benign. He told us that they were scheduling a biopsy for Monday morning and we would know at the end of surgery whether or not it was malignant or not. We continued on to Kansas City and decided to have a great weekend - which we did!
Monday, ,June 26th Harper had a biopsy of her cheek (going through the mouth to the cheek) and everything went well. The ENT came out to tell us unfortunately they still did not have a difinitive answer as to whether it was malignant or benign. We were pretty upset at that point. He told us that we needed to prepare ourselves for the fact that this very well could be malignant and if so we would need to seek treatment. We left the hospital thinking we would know within 24 hours. Still without having a diagnosis, they scheduled us to meet with a pediatric ENT at the University of Iowa Hospital on Wednesday, June 28th. Soon after meeting with the ENT, we were scheduled to meet with the pediatric oncologists. At that time they had determined it was cancer, but we didn't know what type. Harper was then admitted to the cancer center at the University of Iowa. A mere 4 weeks had passed since we first noticed maybe a bug bite- and ultimately in Iowa City to get the news our sweet little Harper had rhabdomyosarcoma, a fast growing 5" cancerous tumor in her cheek.