The oncologist scheduled us to see the Primary Children's dermatologist on February 28 to see if we could get an official diagnosis from a skin sample. I was hoping and praying that there would be enough, but there wasn't anything significant enough for them to do a biopsy. We got a call from the oncologist after we got home, and she told us that she wanted an IR guided biopsy of the hip lesion done. She also told us that she wanted to do a biopsy of a lymph node in her neck. The oncologist said that the enlarged lymph nodes in the neck for LCH are uncommon, so they wanted to cover all bases to make sure we weren't missing anything.
The soonest we could do the biopsy was Monday, March 3 at 1pm. The difficult thing about it being at 1pm was Isla had to fast for it. I tried to keep her busy in the morning to keep her mind off food. I took her on a walk and then let her play in the bath for a long time. She went down for a nap at 10am. Then we woke her up to take her to her bone and lymph node biopsy.
I honestly don't remember after we got there how long it took for them to get started. It felt like a long time, especially because she hadn't eaten anything. The radiologist and anesthesiologist came in to introduce themselves and asked if we had any questions. The radiologist was going to do an IR guided biopsy of her right hip bone lesion and a biopsy of her lymph node in her neck. They let us give her a kiss before they took her back.
We waited out in the waiting room for so long. We were told that it shouldn't be a long procedure. When she finally was done, I felt like I was running to see her. A nurse was holding her in a blanket and she had her eyes closed. The nurse handed her to me and I sat on the hospital bed. She had a rough time waking up. She kept falling asleep and her heart rate would drop. She was so tired.
Eventually, she started drinking and eating like crazy. The nurse gave her any treats he could find and she ate them all. The radiologist came in and told us that the biopsy of the lymph node in her neck was a breeze. The hip lesion, not so much. He told us that he took three passes on the hip lesion and that he hoped he got enough for the biopsy. He said it was in the top 20 of hardest biopsies he has ever done. He said it was so hard because where he was working was right up against the intestines. He then looked at me and said "I hope I didn't perforate her intestines. I guess we will find out."
I guess we will find out? Are you kidding me? The radiologist then looked at the clock and said, "I'll be back in 30 minutes to push on her abdomen to see if it gives her pain." He then turned around and walked out. After everything Jordan and I had been through already, the uncertainty of everything, you're going to tell us "Oops, might've cut her intestines open!" Instant anxiety took over my body. I felt like breaking down, but I stayed happy for Isla.
The radiologist came back after 30 minutes and pushed on her stomach. She didn't act like she was in any pain, so he said we could go but if she started showing signs to go immediately to the ER. Then they said we could go. I was constantly stressed for the next 24 hours wondering if she was suddenly going to go septic, but she didn't.
The oncologist called on Friday, March 7 after she got the results of the biopsy. She said that it is Langerhans Cellular Histiocytosis. Her bone sample tested positive and her lymph nodes tested positive as well. It is unusual for LCH to be in the lymph nodes, so our oncologist wanted a PET scan done to make sure it wasn't anywhere else in her organs before we started treatment. The soonest we could get a PET scan scheduled was Tuesday, March 18.
I apologize for being behind in writing about Isla's journey. This has been one of the most difficult and busiest time of my life. I tend to withdraw when I'm struggling so it's hard to find motivation to write. I will try to be better. Thank you for being here for Isla's journey.
Love, Megan
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