Mya’s Story

Site created on January 11, 2019

Welcome to Mya's CaringBridge site.   We are using this site to  keep everyone updated on Mya's treatment plan and progress.  Many of you may know Mya's story already, but here is a short summary .  Mya was diagnosed with brain cancer when she was 18 months old.  Her tumor is specifically called a pilocytic astrocytoma of the brain stem.  She underwent 2 brain surgeries after her initial diagnosis in October 2007.  The first was to debulk and biopsy the tumor and the second to place a VP shunt.  After she recovered and became stronger she had a port placed and began chemotherapy in November 2007 and completed 74 weeks of multi-drug  chemotherapy.  Her tumor responded to chemotherapy and decreased in size and malignancy.   One of the chemotherapy drugs caused moderate permanent hearing loss, memory and comprehension problems, and several permanent dental issues.  She was then off treatment  doing well until she relapsed at the age of 5.  She again underwent multi-drug chemotherapy, but with different medications for 72 weeks.   She continued to attend Kindergarten and 1st grade through these treatments and again her tumor responded and decreased in size and malignancy.  


Since November of 2012  Mya has done very well.   She has been very active in many sports and activities including softball, archery, piano, band, and most of all gymnastics.  She has continued to do well in school, working extra hard to overcome some of the permanent long term effects of the therapies she has gone through.  She had checkups every 3 months for the first 3 years post treatment and for the last 3 years she has been going every 6 months.  She was able to celebrate 5 years off treatment in November of 2017.  She then graduated at a Dance Marathon celebration in February of 2018 with a lot of family and friends there to celebrate.   


Yesterday, January 10, 2019 Mya went in for a routine check.  She had no symptoms and we had no concerns as she was our normal active girl.  We were there for a MRI at 0700, saw hematology at 0830 where we found out her oncologist Dr. O'Dorisio is retiring,  had her shunt reprogrammed shortly after at Neurosurgery, and then we had to wait until 1300 for her appointment with the neurosurgeon, Dr. Menezes, to discuss her MRI results.    We decided to hang out together on the 12th floor over-looking the Hawkeye football field where we ate, worked on some of my work and her homework together.   When it was time we headed to the Neurosurgery Clinic.   We were taken back to a room where we waited to see Dr. Menezes.  His NP, Trang and he came in shortly.  He assessed Mya thoroughly while Trang and I observed.  He left the room and when he headed back to our room I heard him say in the hall, "they are going to be devastated."  I assumed he was talking to Trang regarding another patient/case.  He then asked Mya to go to the lobby to play games on her phone while he talked to me about the scans.  Mya did and he started to bring up images of her tumor on the screen.  I immediately saw the tumor on the scan, but assumed it was her tumor from when she was younger, as he compares them all.  I looked at the top of the scan image and noticed it said 1/10/2019.  I started crying because I knew it was back.  He saw me crying and said, "this is not good news."  He then talked to me about possible treatment options, next steps and scheduled some follow up appointments with radiation therapy and chemotherapy specialists.  I had Mya come back to the room and broke her heart, telling her that her cancer had returned.  She was devastated, as we all were.  This was even harder than the past as she is older and understands so much more than she did with her past treatments.  I was able to get a hold of David so he could get to the hospital for the rest of our appointments.  That leads us to today and our first update.  Thank you everyone for your continued thoughts and prayers.  They are appreciated more than you know.

Newest Update

October1, 2019 Update

Journal entry by Brooke Gilchrist —

As many of you have probably been wondering the MRI results on the 16th were not what we were praying for.  Mya's tumor is continuing to grow despite the 3 chemotherapies we have tried so far.  When they talked to Mya about this, she responded, "well at least I'm still here so I can fight.  I'm not giving up."  On that Monday we immediately began the new chemotherapy regimen of Irinotecan and Avastin.  She was at the hospital for approximately 8 hours receiving chemotherapy.  This regimen makes her much sicker.  More vomiting and headaches and overall not feeling well, but on the bright side she gets a week off between treatments.  She was excited about that.  She received her 2nd dose of this chemo yesterday and again she has been very sick.  We are trying to keep her sleeping as much as possible, so she isn't as sick.  She is still doing IV fluids at home at night to help keep her hydrated while she is sick and to assist with lessening the nausea a bit too.  Last weekend she was lucky enough to play on Leia's softball team in a tournament and all of the girls had a fabulous day, even Mya.  She hit every time she was up to bat and she seems to be regaining a bit of her coordination and balance back after being toxic from the Vincristine.  They walked away with 1st PLACE!!!  To say they were excited would be an understatement.  The next day Mya was supposed to have another softball tournament with her class and it unfortunately got rained out.  Instead of playing softball the team decided to have an end of season party at AirFX, where the surprised Mya with new Mya Strong Tshirts that all had their numbers on them.  The intent was to play softball in them, but they jumped as a team in them instead.  :-)  A huge thank you to the Houts family, John and Jamie at Cutting Edge Graphics, and the entire softball team family for making this all happen.  We are so blessed to have such wonderful people in our lives that think of things like this, take time to set up events to brighten Mya's day, send a small gift or card, or just tell her they are cheering her on.  Mya is down for the count today, sick this morning still and sleeping right now, but is hoping she wakes up feeling better because she wants to go to school tomorrow to be with her friends.  It is also Homecoming week, so I am sure she wants to partake in those activities as well.  Mya's next MRI will be in December.  Until then, the plan is to continue this chemo every other week and pray her heart and kidneys tolerate it okay and her tumor not so much.  She needs good news.  She is fighting so stinking hard.  Mya has another softball tournament this weekend with Leia's team on Sunday in Dubuque and she is looking forward to that.  She also has Volleyball this Thursday and next Tuesday and Thursday.  Not to mention gymnastics.  :-)  Busy girl, but she loves it and misses it when she can't do it.  

Thank you to all of you for your continued support and prayers.

Love,

Brooke, David, Mya, Leia, Ella, Tate, James, and Pria

P.S.  I haven't reminded in a while.  If you donate to Caring Bridge on here it is going to their website, not to us.  We have a had a few people donate thinking it is going to us and it is not.  Thank you!
Read More of the journal titled "October1, 2019 Update"
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