September Share – Madison – Choroid Plexus Carcinoma

To help bring even more awareness to childhood cancer this September, we at The Gold Hope Project decided to give a platform to all the childhood cancer heroes. Their story in their words.  

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What is your child’s name? Madison

What is their diagnosis and prognosis?Choroid Plexus Carcinoma a rare form of brain cancer . We are currently on a clinical trial and it’s her last hope for a cure . We are taking it day by day.

How did you discover they had cancer? 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 25 of her treatment on August 5, 2015 she has been on this treatment for 24 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 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 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.  

What was your perception of childhood cancer before your child’s diagnosis? I thought is was rare and never knew that their we’re so many types of cancer

What kinds of treatments and procedures has your child been through? Are there any struggles your family faces because of treatment? She has been through 3 brain surgeries, 2 tumor removals , shunt placement. Broviac and port placement,
too many MRIs , echo, ekgs sedations and spinal taps to count. Chemo since she was 4 months old and she is still getting treatment now and she is almost 5. Too many pokes, Er visits, blood and platelet transfusions and way too many clinic and dr visits.

What did you learn about childhood cancer after your child was diagnosed? Was there anything that shocked you about the disease? That it is not rare! Too many kids are fighting.  

If there was one thing you wish people could do to help a family with a child battling cancer, what would that be?  Never walk away and offer anything like sitting with you, helping in any way you can. No offer (of help) is too small.  

What do you think about The Gold Hope Project’s mission to bring awareness to childhood cancer through photography? It’s an amazing program for these kids and their families that are battling this horrible beast we call cancer. We need to show the world that cancer isn’t always smiles and happiness it’s about fighting everyday to live.

Has your family received a Gold Hope photography session? Yes

If yes, please describe what those images mean to your family and what receiving the gift of photography did for your family. She received one when she relapsed in 2012.  It was an amazing experience and the pictures will last a lifetime

Thank you so much to Tracy for taking the time to share Madison’s story.

Keep up with Madison here. PreciousLilAngel-fighting strong for Maddie

Submit your fighter’s story here.

Ready to do more? How about joining the #randomactofhope movement?

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