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 the devastating news once again that she had not just one but two new tumors on her brain. We went in the next day to have a port put in and she immediately started chemo on her second birthday.We were not planning on anymore kids at this time due to Maddie being dx with a very rare syndrome called The Li- Fraumeni syndrome. It's a gene mutation of the TP-53 gene that stops the growth of tumors and that repairs damaged cells. This syndrome doesn't mean you will get cancer but it just a higher chance of developing tumors either benign or malignant .She has to avoid radiation of any kind like CT and X-rays.Frank her daddy also carries the same gene mutation. So it's a 50/50 chance our kids will have it. So far Avah is good she has had MRI's and ultrasound done and they are all normal. So in September 2012 she started high dose outpatient chemo every week for two months.the MRI she had done after two months showed her tumors were growing. So we immediately stopped that treatment and began another outpatient chemo that involved iv chemo along with liquid oral chemo we had to give her at home. Well that was not working well she would spit it out, so we had to bring her into clinic everyday for 5 days to get a ng tube put down her nose give the chemo and take it out and we did this 5 days a week. So we did that for a little bit that wasn't working either so we started inpatient chemo with 4 different chemos everyday for 1 week and then 4-5 days to get her counts back up to go home. We did this every week for a year. We went and got a second opinion from a dr in Boston that specialized and studied choroid plexus carcinoma. He said what our dr here is doing is what he would do as well. Do the dr in boston worked with her oncologist here.So nothing was shrinking her tumors so on September 11 2013 she had one of her tumors removed , the one they could get to her without it affecting her. That tumor was sent out to have a tumor marker test done to see what would be the best drugs to help her. So we got that back and started the new treatment right away the end of September 2013, her treatment is part of a study .She has been on this treatment since. She started cycle 21 of her treatment on March 20., 21 months of this clinical trial 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 .
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 4.5 years old right now
We do not have an end date of treatment at this point. We are basically taking it month by month. She gets spinal taps , echos, EKG and MRI's of the brain and spine every 3 Months.
Thank you for the love and support you have chosen to give our Maddie and our family. She started treatment at just 4 months old and continues to fight strong. We are having so many struggles Expecially financially. It is a struggle to pay all of the bills and along with just everyday needs.All donations are appreciated more then you will ever know. Thank you from the bottom of my heart for your love, support and prayers!
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