LCH

After the horrible ER visit, we waited until February 24 for her MRI scan. I almost cancelled a couple of times, but ultimately decided to do it for peace of mind. She was the first appointment of the day, which was nice because she had to fast for the MRI. I think the hardest part of the MRI was holding her down while they put the mask on her to put her to sleep. 

We waited out in the lobby for what seemed like an eternity. I wish I could remember how long we waited, but we've been to the doctor so many times, it's hard to keep it all straight. They had us come back when they were done and they handed her to me. I held her in my arms in the rocking chair and she looked so sad. We waited about an hour before we could leave. I rode in the backseat with her and she screamed the whole way home.

We fed her food at home and then put her down for a nap. I didn't sleep very good so I went to take a nap the same time as Isla. At 12:58pm, a call from our pediatrician's office woke me up. I answered the call and our pediatrician was on the other line. Once he said, "They found something in her MRI, and oh how do I say this?" My heart dropped, I put the call on speaker and sprinted down the stairs to Jordan.

The pediatrician said, "She has langerhans cellular histiocytosis. It's a rare type of cancer. They found it on her bones." Once I heard that, I remember not being able to stand and just falling to the ground, crying. Jordan was by me rubbing my back. I remember trying to keep calm on the call despite me being on the ground sobbing. He told us that the cancer was rare but had a high curable rate. He told me to google it and I remember feeling a little relief because in the movies, they always tell cancer patients not to google anything. He told me that they needed to see us at Primary Children's the next day at 8am.

Everything after February 24 has felt like a blur. The next day we went to Primary Children's. They did 19 x-rays. Jordan and I sat in the hall listening as Isla screamed for 20 minutes. I really think those x-rays affected her because she hasn't been the same about the hospital since. Then they did an ultrasound on her stomach of her major organs. The girl who did the ultrasound on Isla was someone I went to Jr High and High School with. It was nice to talk to her. She gave a doll to Isla and she absolutely loved it. Afterward, we went to Oncology. 

It felt so weird sitting in the waiting area for Oncology. How could this be our new reality? Isla had calmed down from the x-rays and ultrasound. She was being so cute with her new doll.


They took us back to one of the oncology rooms. It was pretty emotional. I wished that I could take away what Isla was going through and go through it myself. "Why her?" I kept asking Jordan. She's only a baby. They did blood work on her in the room and we had to collect a urine sample. Getting a urine sample from her diaper was pretty stressful because she wouldn't drink any water. But we eventually got it!

We met Isla's Oncology doctor. I won't say her name because I haven't asked if I could use her name in my blog. But she is amazing. She explained everything to us about LCH. LCH, cause, treatment, etc. It felt like information overload after the 24 hours that we had. She said before we start chemo, we need an official diagnosis by getting a biopsy of her skin. But if there wasn't enough on her skin for a biopsy, then she would need a bone biopsy. That would be the next step. 

In my next post, I will write about her biopsy. Slowly but surely getting caught up on everything. Thank you for being here for Isla's journey!

Love, Megan



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