Chelsea’s Story

Site created on May 20, 2018



5/21/2018:

We (Christine, Chelsea's mom and Carrie, Chelsea's aunt) have created this caring bridge account as a way for family and friends to stay updated and learn more about what is going on with Chelsea.  Our hope is to be able to realistically relay what the team of doctors have found and also hopefully answer questions by being thorough in the information we are putting out there.  Most of all, this is to keep the people who love and care for Chelsea in the loop so that in turn you can provide more love, encouragement and support for her.  Alot of positivity, courage and hope goes a long way!



Chelsea had an MRI 5/4 to confirm a large (tennis ball size) tumor in the shoulder/arm pit area.  The tumor is about 5cm X 7cm.  It has grown rapidly over the past 3 months and is very aggressive.  A biopsy of the tumor was done 5/16 and was confirmed 5/18 that unfortunately, it is a malignant.  She has been diagnosed with a "Malignant Peripheral Nerve Sheath Tumor". 

Current Plan:  

Chelsea is in the very best hands and will be treated by a wonderful team of doctors at the University of Utah's Huntsman Cancer Institute.  We will head to Utah within a week for more imaging and an appointment with the surgeon and to schedule the removal surgery.

We are unsure at this time of what the treatment will be after surgery. There is a possibility it could be radiation or a combination of radiation and chemotherapy.

We are trying to remain positive.  Please continue to encourage, love, and support Chelsea through this process.


More info about Chelsea’s genetic condition which was a result of a genetic mutation that occurred in-utero.


It is called Neurofibromatosis and she has Type 1 (there is a Type 1 and a Type 2).  It’s also shortened and called NF1.


Some common traits of NF1 are extreme freckling that can resemble birth marks, they are called “cafe au lait” spots and are one of the initial signs that someone has it that doctors look for.

Also a larger head, eyes that are spaced further apart are good first indicators as well as mild cognitive impairment.

Chelsea has a severe form of NF1 so she suffers from most if not all of the symptoms and complications from the genetic disorder.  

The symptoms and complications Chelsea has due to NF1 are:

Tumors of the eye, such as an optic glioma which cause vision impairments or blindness.

Tumors on the brain, spinal chord and organs which create a higher risk of becoming cancerous (malignant).  

Chelsea has had 2 brain tumors, one when she was 5 which she received 15 months of chemotherapy for and one when she was 11 which she received 18 months of chemotherapy for.

Large, soft tumors called plexiform neurofibromas, which may have a dark color and may spread under the surface of the skin that appear like a “pea” under the skin.  Chelsea has these all over her body.

Severe Pain (from affected nerves)

Small, rubbery tumors of the skin called nodular neurofibromas

Large tumors under the skin (plexiform neurofibromas), which can affect the appearance and put pressure and cause severe pain and sometimes loss of function on nearby nerves and limbs.    Chelsea had a large tumor that grew around her left eye that had to be removed.  This caused her to lose most of her vision and movement of her eyelid on her left eye.


You can get more info about Malignant Peripheral Nerve Sheath Tumor's from these websites:

https://www.mayoclinic.org/diseases-conditions/malignant-peripheral-nerve-sheath-tumors/symptoms-causes/syc-20362603


https://rarediseases.info.nih.gov/diseases/10872/malignant-peripheral-nerve-sheath-tumor


http://sarcomahelp.org/mpnst.html


If you have questions feel free to post them in the comments below.


If you’d like to snag a “Team Chels-a-Roo” shirt to show your support and love for Chels, you can find them here-

http://shop.customimage.com/teamchelsaroo/shop/home

We’re also accepting business and family or group sponsors and your logo or family/group name will be included on the back of the shirt. Contact info is available within the t-shirt website.


Thank you for all your love and support!

Christine, Carrie and team Chelsaroo

Newest Update

Radiation week 1 recap

Journal entry by Christine Hummer —

Hi all!
I hope if this is your first visit that you go find “Chelsea’s story” to learn more about her genetic disease Neurofibromatosis and get up to speed on what’s going on.
After today’s treatment it (Thursday, June 14th) marks the completion of day 5 and week one of her 5 week, 5 days a week radiation treatments.
She’s tolerating the radiation very well and doesn’t have any adverse side effects quite yet. We meet with Dr. Kuhn today.
Tuesday’s are Dean’s (my hubby and Chelsea’s step-dad) day to take Chels to radiation and he took some great pics that she posted on her Instagram photo journey through this process. You can find her on Instagram at “teamchelsaroo” and check out this process through her point of view.
Aunt Carrie took her yesterday and we decided to try something new for some nausea she’s been having and some pain that we were having a hard time managing. Chelsea was SUPER brave and tried acupuncture!!! And guess what?! It worked GREAT! Big props to Chels for overcoming the fear of it hurting. It was a very relaxing and great experience for her! Thanks to Aunt Carrie for being with her and taking her to those appointments.
Team Chelsaroo shirt are now available to order for the next 11 days. If you’d like to be a business or family sponsor, please contact Carrie at ckrainock@gmail.com
You can order shirts to join and support Chelsea on this journey at:
http://shop.customimage.com/teamchelsaroo/shop/home /> Funds raised from t-shirt purchases will go towards a fun outing/activity of Chelsea’s choosing! Please make sure you post on social media or send us pictures of you in your “Team Chelsaroo” shirt.
Thanks for checking in, we are grateful for all the love and support coming our way!
-Christine (Mom)
Read More of the journal titled "Radiation week 1 recap"
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