We had the pleasure of Adopting our 4th child in 2008. He has been with us since he was 6 days old straight out of the NICU. But, at 14 months old he was diagnosed with Sacrococcygeal Teratoma. Basically, he had a mass the size of another baby inside him that was wrapped around his tailbone and by the time it was found, it had grew up into his abdomen. We have been fighting cancer and its side effects with our now 15 year old son for 14 years. The only treatment for this rare cancer was 4 rounds of chemo, surgery and then 1 more round of chemo. Unfortunately, this did not work for Aidyn. They ended up having to continue all kinds of adult chemo medications until they could figure out what to do next. Thank God for Aidyn’s Cancer doctor that did not once give up on him because all the other doctors gave him to the age of 2. Aidyn had chemo for 2 years every 21 days. All treatment had to be done inpatient because he always had a bad reaction to the chemo where interventions had to be done. He had 3 months of Proton Radiation in Jacksonville,Fl and it was done daily. He has had over 100 surguries, many lab draws, too many infections to keep count, has learned how to walk at least 10 times, was paralyzed from surgery for 6 months and we basically lived in the hospital for the first 6 years, he has spent 3 weeks twice in inpatient rehab to learn how to walk and get used to water, etc. He now has complete hearing loss from chemo and antibiotics, he is autistic, he is in heart failure and just recently his kidney’s have taken a hit and we are trying to keep him out of kidney failure. Because of all this, he has a central line that goes to his heart where he gets IV medications and his IV nutriention, he has a foley catheter in his belly button for urine, he has a colostomy and a feeding tube in his belly for other medication and other feeds. He has been in a wheelchair since the age of 2 or on the ground most of the time because it is difficult to have enough breath to walk for long. He also has oxygen as needed. Because of his immune system he has no friends because he has not been able to go to school. His teacher has always came to the house. We did try in 3rd and again in 5th grade to do a couple hours at school but it was not tolerated and he ended up with infections and hospital stays. It breaks our heart but it is needed to keep him safe. Aidyn is supposed to have 70 hours a week of nursing, but we do not because of how much he has going on, most nurses say he is too much. I, his mother, have back issues and Rheumatoid Arthritis and it is a struggle caring for him every day. Aidyn has not left my side in 15 years and I would not have it any other way but that means I can not work outside the home and my husband has been trying his best to provide and support all our needs on his own. Below is just a small list of some things we have needed to do but do not have the means to do them. Cancer organizations he no longer qualifies for because he is not currently on chemo and Spinal organizations won’t help because he conditions weren’t caused by an accident.
Our house of 30 years is falling apart. I can not imagine ever moving because we love where we live and our kids and grandkids have grown up here. This is the only home Aidyn knows and it would just be devistating to lose. But, it is not working for Aidyn and all of his needs and devices. It needs to be adapted in many ways. His bathroom needs to be completely wheelchair accessible, it is not. His room looks more like a hospital room because of all his supplies and we are only able to walk around his bed and even though we have tried to make it more like a boys room its impossible. He can’t even get through the doors with his wheelchair or gait trainer. We have beams in several rooms of the house that need to be fixed or replaced. Our ceiling needs to be replaced in the kitchen and livingroom from a roof leak. Insurance only paid to fix the roof. One bathroom and bedroom can’t be used because of a water leak that we didn’t know about until it was too bad. We had a leak in our basement caused by the water company, and they wont fix it, and neither will insurance. The heating and air need to be replaced because we haven’t had heat in one part of the house for about 3 years because the part is no longer available and I am sure something is going on with the septic tank. There are many more small items to do too.
We have used all our savings and everything we had to care for Aidyn and pay bills. We haven’t been on vacation in 15 years. We try our best not to ask for help becasue we know everyone has there problems too. But, Aidyn’s issues are not going away and will probably coninue to get worse. Aidyn now has 3 pages of diagnoses. We are constantly living with the thought of losing the one thing that is consistent in his life, the only house he has ever known. We are looking to raise enough money to make sure that never happens while fixing the issues that need to make it safe and loving environment for him to be. Please help us and be part of his journey. For those of you who are already part of his journey, we thank you from the bottom of our hearts. For those of you who are becoming part of his journey, thank you. We welcome you to read his journey on Caringbridge.org/updatesonAidyn. You will see a brave boy with such a wonderful soul and great outlook on life. Please share with everyone that you can and help us with a tax deductible contribution through this site.