Paisley is our four year old princess who is fighting a huge battle! At the age of one she was diagnosed with Gardener syndrome/FAP. These two diagnoses carry a lot of complications ranging from tumors to a 100% of colon cancer. These desmoid tumors are non cancerous however are extremely hard to defeat! We found out Paisley had one growing along the left side of her jaw when she was 3 after being sent to CHOA for a lump. A month later she underwent a THIRTEEN HOUR surgery, where they removed the entire left side of her jaw and the inside of her cheek. The tumor had grown through the inside of her mouth and was inches away from her having to have brain surgery as well! She had her jaw reconstructed with hardware and rib bone. She was completely sedated for 11 days. Her jaw was wired shut she had a trach, feeding tube, and a skin graft. We spent the next 2 1/2 months helping her recover in the hospital. When her jaw has fully formed they will have to do a permanent fix with bone from her leg as her rib bone will not grow with her. She was immediately put on a chemo to take at home to try and keep the tumor from coming back. We went for regular visits and scans and then right before her 1 year surgery anniversary I noticed a “bump” below her ear. We were brought in for an MRI to find out the tumor was back! We’ve been trying different chemos for almost 6 months and have yet to find one to shrink or stop this tumor! She recently started the “red devil” chemo infusions. With the first round she had an immediate allergic reaction, they had to stop it and give her Benadryl and try it again. It really seemed to drain her little body but she is a fighter and fought so hard to feel good even on the worst days! She will have these infusions for the next six months as long as she can handle them and the tumor doesn’t cause any more complications. It’s really difficult for her to eat, when she chews it’s extremely painful. She doesn’t like to complain of pain but the last few weeks have been rough on her! It’s heartbreaking as a parent to watch her go through all of this! If the tumor continues to grow they will go through with the surgery and she will have to undergo radiation after! If the the chemo works enough to shrink it or stop it from growing she will continue on it after surgery until they’re comfortable enough to try a different chemo. The risks with this surgery are greater than the first! Sadly this will not be the only tumor she has to deal with in her life time. They are hard to detect until they are causing complications! This is why it is so important to find a chemo that will stop them! She also has a 100% chance of colon cancer and will have to have her large intestines removed in or before her early teenage years. They will also remove her colon and try to stretch her small intestine and make her a new colon. Many who have suffered with this disease have other complications like liver cancer. She has to see her oncologist to have regular labs done along with scans and her infusions. We live about an hour away from her hospital and also have 4 other children ranging in age from 1-12. Her siblings have been extremely understanding and are always supportive! They spent their entire summer helping her recover and smile at the hospital last year! We will forever be thankful for CHOA and the Ronald McDonald House! We have been asked a lot about a GoFundMe account to help with travel expenses along with the medical expenses that insurance does not cover. We went back and forth on whether or not to set one up, we know there are so many who love our baby girl and want to help in some way. We also understand times are tough for everyone right and it’s Christmas time! If you would like to donate and are able please feel free to! If not please continue to pray for our sweet girl!! Thank you and God bless!
I am posting the link to her Facebook page for anyone who would like to see her journey and keep up with updates!
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- Joey Zavala
- Robin Salomone
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