11/29/2025
We are with you, Aspen! You are such an inspiration to so many! You got this!!! HLH has nothing on you!!! Remember how strong you are and the army you have supporting you!! 💪💙
Please consider supporting our extended HLH family!
Here is part of Aspen's journey as stated by her mom. She is in need of a second BMT! As if one isn't bad enough...
"We packed up and headed to Cincinnati for… who knows how long. A month? Maybe longer. We’re already having big, heavy conversations about what “longer” could look like with the very likely possibility of a more permanent move. My brain still hasn’t quite caught up to the reality of it.
Aspen had her first ultrasound and labs today to see if she’s ready to begin her egg-retrieval cycle. Her left o***y looks great; her right, not so much. A large cyst may affect her chances. We walked her through every medication, every injection, every step of the next two weeks. She starts shots tonight and meets with anesthesia tomorrow before her procedure.
Tomorrow morning we also meet with her clinical trial team, and we’re hoping pathology on her thyroid finally comes back. That report will determine a lot of what comes next.
Our insurance case manager is still fighting for some (not nearly all) coverage, but the odds aren’t looking good. Another denial came in Friday. One round costs $15,683. And realistically, one round will likely not be enough, especially with the cyst.
The hospital is helping us navigate this first round given the urgency, but the financial weight is enormous. We’re scrambling to understand what this means long-term, especially once we roll into transplant and all the necessities that come with it.
The ideal plan — the one we’re clinging to — is to complete Round #1, immediately roll into Round #2, and then have one o***y removed when her central lines are placed. That o***y would be stored and eventually reimplanted once she’s older and (hopefully) safely transplanted. She will also need medication throughout transplant to “pause” her remaining o***y and stop her cycles. The hope is that once she’s on the other side of all of this, she’ll still have enough hormone production to avoid lifelong hormone-replacement therapy.
Now imagine explaining that to a 13-year-old. That before she’s even old enough to drive, she may enter menopause. That her ability to have the future she dreams about will depend on what we do in the next few weeks. And yet, somehow she absorbs it all with this steadiness, this grace, this quiet courage that leaves me breathless.
I am so incredibly proud of her.
And I’ll be honest: this hurdle has knocked the wind out of us. Packing up and leaving home again. Trying to make the finances work. Setting aside pride and asking for help. The messages, the compassion, the shared outrage on her behalf—every bit of it has moved me to tears.
Below is the link to her T-shirt design. Please keep sharing. We’ve taken out loans to cover this first cycle, but beyond that… we don’t have a safety net. And the idea of not being able to give her this chance is something I can’t even begin to stomach.
To our community, thank you for loving her the way you do 💙"
https://www.bonfire.com/team-aspen-2/?fbclid=IwdGRjcAOXYl5jbGNrA5diWWV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHnOeP4ss6mYCiTjT--zwqF_fLTjUlcHohiEozxAlDXErwUYJhPd2zesYrhIe_aem_KRON9DuZ--zC7pjZht4UFQ
To follow Aspen's journey - https://www.facebook.com/share/16dh5fEALx/
