Tracy Pagel and her family
Tracy is a single mother of 3. Her 6 year old daughter Maddie is battling cancer. The emotional stress that Tracy faces daily is overwhelming. But hearing about her financial problems back in August broke my heart. Hopefully are December 3rd event can help them out financially.
********Her story told by her mother *******
Madison was diagnosed in January 2011 with a rare form of brain cancer. Maddie's diagnosis is brain cancer with hydrocephalus and also cancer in her spinal fluid with a spot on her spine. It's called choroid plexus .She was the youngest dx there at only 4 months old.She endured so much in 8 months ..!she was in ICU for 7 weeks during that time she had Tumor removal , drain put in her brain to drain the fluid from her brain,Broviac ( line ) put in her chest and immediately started chemo . Then the day before we got discharged she had Shunt placed. She had a total of 11 cycles of chemo all before she turned 1. To many MRI's, spinal taps and inpatient stays in that short 8 months.The drs put her in remission when she was 13 months old ( October 2011)She still was getting spinal taps, MRI's every 3 months . Everything was going well , she was finally free living outside the glass. But unfortunately after her 9 month scan and I was 7.5 months pregnant with Avah her dr called and told us that she had relapsed with two new brain tumors. She immediately went in and had a port placed and began outpatient chemo. But Nothing was working , so on September 11, 2013 she underwent another tumor removal and had a tumor marker test done and it came back with 4 different chemos/ meds that will hopefully get rid of her cancer/tumors. She started the treatment the end of September 2013 and she is still on this treatment today .It is a clinical trial and not knowing if she will beat this. She gets 4 different chemos orally every single night at home. 3 of them are liquid and the other one are capsules that she chews with Reese's peanut butter cups bc she can't swallow them yet.She goes into clinic 1- 2x a month for counts check, urine check and to meet with her drs and she gets Iv pentamidine to help her fight off certain types of pneumonia.
Maddie is 5 years old right now , she will be turning 6 on September 4th, she has been fighting this battle for almost her whole life .We are basically taking it month by month. But we just found out that her Drs are planning on taking her off the clinical trial come fall (September) bc her body is just to tired . The treatment is Doing more harm than good to her body . Her Drs feel that when September hits she will have been on it for 3 years and it's time to stop. We have no idea what the future holds for Maddie but all we know is that she is strong and she will continue to fight. She will continue to have spinal taps , echos, EKG and MRI's of the brain and spine every 3 months. The Drs will watch her closely and unfortunately if the cancer spreads that are only a couple options that they have discussed and that is a biopsy or a complete tumor removal But the risks are to high to do it .. We have had two neurosurgeons tell us that 99.9% she would not wake up herself meaning not walking , talking or something. So we don't want to take that risk. But we are just taking one day at a time. She has her next MRI and spinal tap next month. Also she will be having a audio gram due to her not hearing well. She is having so many side effects from hearing loss to losing some of her eye sight to tremors , no taste buds , short term memory loss to severe PTSD and OCD .
She is also now experiencing non visual seizures that now she will have to have a two EEG impatient .