First, let me thank every one for you for your support and kind words. This week was rough and I honestly hit rock bottom mentally. I’m feeling better now (thanks, therapy). I’ve been slow to reply, but please know how much I appreciate you.
Monday - September 8, 2025
My husband, Isla and I went to Primary Children's in Salt Lake City for our appointment with her pediatric oncologist. I was questioning whether or not we should bring Isla, but ended up bringing her just in case.
I guess Intermountain Healthcare completely changed their computer program and September 8th was the first day of the new program. It took a while to check in and then we waited almost two hours in the appointment room for Isla's doctor. Isla was not happy and I wasn't happy either to be honest. At least we could feed her this time.
The rest of my post will be mixed with what my husband wrote as an update. His words will be italicized. I'll be inserting my comments here and there.
She has new lesions on her skull, spine and hip, and the others were still lighting up in her latest scan. The treatment route we have taken helped with the lymph nodes, but not the bones.
As far as treatment, there are really two approaches left to take. One is trial drugs that seem like more of a long-term treatment for a chronic illness that, if unsuccessful, leads us back to where we are at now. It also has more potential side effects that would require eye doctor visits, dermatology visits, etc.
The other is to place a port and administer an IV chemotherapy drug 5 days a week (at primary children's) every month for 6 months. This has been the tried and true method used from the beginning. We wanted to go a less invasive route at the beginning in hopes that we could avoid this.
With the lesions on her skull, the doctor explained that their location puts her at risk for neurodegenerative LCH. In her case, that would mean LCH entering the cerebellum and affecting motor function — things like walking, talking, or writing. Damage done to the brain is permanent with LCH. It also makes treatment more difficult.
With all of the information, we've decided to go with a port, knocking this out in 6 months (instead of a year or more) and hopefully allowing Isla to move on from this.
She will lose her hair and experience more digestive issues (like nausea and diarrhea). She will also be immunocompromised. We asked the oncologist if our other children can still attend school, since schools are a cesspool for germs. They said yes — but we’ll need to take extra precautions at home to keep Isla safe.
They want to move quickly with this, so they're looking at placing the port September 22 with treatment starting the same day. They also want an MRI so that they have baseline brain function. The MRI will happen this next week on the 19th at a different hospital.
I was in shock for so long because Isla seems completely healthy — I never would have guessed the treatment wasn’t working. When the kids are asleep, I have really low moments where I just curl up and cry.
What’s made this even harder are the hurtful things people have said about Isla not being healed. Someone even suggested it might be because we’re not living up to the standards we should be.
I could go on a whole rant, but I won't. I will just say that I believe God is incredibly loving, not vindictive. I believe He hurts when His children hurt. He has comforted me during really difficult moments this year and has blessed our family beyond measure.
What a blessing it is to be Isla's mom and to be her support during something so difficult. Do I wish I could make it disappear forever? Without a doubt. I believe God feels almost the exact same.
On another note, we will be getting family pictures done before the port is put in and her hair starts to fall out. I know Isla will be sad about her hair. She loves having me do her hair and loves bows. I get choked up talking about it. But like I've said before in this blog, it's really hard to be sad around Isla. She is such a light and has the cutest personality. I will keep updating the blog and we will keep on keeping on. The next update will be about her MRI and the results of that.
Thank you for being here for Isla and our family.
Love, Megan
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