Support Madison's Fight Against Brain Cancer
Madison Grace is a strong, silly, and fiercely independent 2 year old girl who is full of life and spunk. Madi is also a brave little warrior who is battling Diffuse Astrocytoma with MYB altered (brain cancer). A rare type of pediatric low-grade Glioma. These types of tumors start as a single abnormal cell in her brain that mutated over time. This is something that she was probably born with and started in the womb. There is no rhyme or reason for these types of tumors, they just happen.
Updated**
Here's our story:
[ ] At the end of August, Madi started having spells, which seemed to us like seizures. Half of her body (right side) would lock up and spasm, and it would last about 90 seconds each time. Afterward, she couldn't walk or stand up for about an hour. We took her into the E.R. in Austin, I told the doctor our concerns and how worried we were. I asked him, "This isn't a brain tumor or anything like that, is it?" He LAUGHED at me and told me she would be immobilized and have a lot more severe symptoms. We were quickly dismissed and I was told that it was something viral.. We stormed out of the hospital without our discharge papers and I brought her back in the very next day. I told them that I knew something was very wrong and to run whatever tests they had to, but that we weren't leaving that place until they figured it out or pointed us in the direction of someone who could. Lucky for us, we had a different doctor who took us seriously, and we were almost immediately on our way to Rochester to the St. Mary's pediatric wing for expected seizures.
It was the weekend, so we were admitted for observation until we could get an eeg and mri that following Monday. Over the weekend, Madi continued having spells, which were quickly diagnosed as hemi dystonia. We were told that instead of the seizures, it was very likely that she just had dystonia and would need medication to fix it. When Monday came, they didn't catch any seizures on the eeg, so the seizures were ruled out. Then an mri was done. When we got the results back, it was the worst news I've ever heard in my life. Madison had a 6.3 x 7.4 x 7.2 cm mass (the size of a peach) on the left side of her brain, making it inoperable. Our hearts were shattered. Adam and I had so many questions, but not very many answers.
The next step was to biopsy the mass on her brain. The surgery went as expected, so we were sent back home after 2 weeks of being there. We got home for 2 days, and then we were right back at St Mary's. I was sure that Madi was having seizures while she slept, and that they were different from the dystonic episodes. We were admitted, and an eeg was done overnight. The eeg caught an epileptic focal seizure from the cerebellum, confirming my suspicion. We started her on a seizure medication, and it worked! We were discharged.
The wait for the biopsy results was one of the hardest things we've ever had to do... so much anxiety, so many tears. I now know why they say 'worried sick' because that's exactly what we were. We finally got the call from our doctor, who said he wanted to start treating her for a low grade glioma brain tumor; meaning it was malignant, but that we still needed to wait for the pathology results to know exactly which kind of tumor she was dealing with. They placed the port the very next day, and the same day they placed it, she started chemotherapy. Her chemotherapy drugs consisted of Carboplatin and Vincristine, every week for a year. Chemotherapy was the only choice we had because the tumor is deemed inoperable and Madison is too young for radiation.
It was now time to address Madison's mobility and how we would preserve it. This entire time, she had been losing mobility on her right side, which seemed to be getting worse with each passing day. We stayed in the hospital for awhile longer, and the doctors agreed with me that Madi was losing mobility, which they thought was due to her tumor. It was determined that Madi would benefit from an aso brace for her right foot and leg, and also, a soft helmet because of her lack of coordination. The day she got her brace, was a night and day difference! Thank goodness!
Over the next few weeks, she continued chemo, and the pathology results came back. She was officially diagnosed with Diffuse Astrocytoma with MYB altered. This meant that Madi has a type of brain cancer that causes epileptic seziure disorders, difficulty with coordination, and sensory processing issues. She continued with her same chemo regime (Carboplatin and Vincristine).
Now we needed to address why her port was still not healing. We were admitted at St. Mary's again for wound care and a follow-up with the surgeon who placed it. He cleared us, and we continued chemotherapy, physical therapy, and occupational therapy. It was determined in O.T. that she had weakness in her jaw and tounge, so she also needed eating/swallowing therapy and speech therapy.
During that time, we were also referred to an eye specialist, because I noticed that her right eye seemed to be drooping. The eye doctor diagnosed Madi with Ptosis of the right eye, which will require surgery to fix. We were also referred for developmental testing for autism, but honestly, that is the very least of our concerns.
She had her port placed on September 27th, and by November 30th, it still was not healing. The port became exposed, leaving the surgeons no choice but to do emergency surgery to remove it. The surgery went well, and a drain was placed to help it heal. We were addmitted once again, but the silver lining was that she had just finished the induction stage of her chemo. It was decided that her surgeon would try placing a new port, this time on the left side, December 20th. She's scheduled for her mri imagining that day to see if her tumor is shrinking. After that, we will wait another week to start chemotherapy and give her body some time to heal.
She will then start the maintenance stage of chemotherapy, which is a more aggressive stage.
Please keep our sweet girl, our family, her doctors, and her care team in your prayers. We can't thank you all enough for all of your support and kind words. They help bring us smiles and comfort during this unimaginable time.❤️
She's the daughter of Adam and Sydney. She's the little sister of Hailey, Seleen, and Devin. She's the big sister of Noah. She's the granddaughter of Tom and Debbie Hanson. She's the granddaughter of Chuck Erickson and Laura Downey. She's a beloved neice and cousin.
A lot of you are asking for a venmo link instead, so I will post it down below.
Madison and our family could not do this without all of the support and generosity we have received, and we will never forget all of your kindness. Please continue to pray for Madison Grace. We believe in the power of prayer, and we need it. Thank you.
Her fight is our fight. #madistrong
Adam's venmo:
“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12
If you would like to follow updates, here is a link to her caringbridge.
https://www.facebook.com/share/p/Dud2eyx1oC7o3hT3/?mibextid=oFDknk
Co-organizers (2)
