Avery was diagnosed with cancer on August 8, 2013. She was three years of age. Avery enjoyed going to the library, Gymboree, crafts, playing with friends, etc. Avery was taken to her pediatrician because for the prior month she was not feeling well. I finally asked the doctor to do some blood work on her. He sent us for an ultrasound. Then they asked us to return to his office, and he informed us that Avery had cancer, and to take her to the hospital right away.
The doctors told us they believe it was Wilms tumor. So, we were told that she would be losing a kidney and that hopefully they can remove all the cancer. Avery was prepped for surgery, and an hour and a half later into a five-hour procedure the surgeon came out of the operating room to inform us that after opening Avery up, they realize that Avery did not have Wilms tumor. Avery had stage 4 neuroblastoma. They closed her up, and immediately started chemotherapy. At this time the only inserted a double lumen Broviac into her chest. Over the next five months Avery endured many hospital stays, fever, sour belly, shots, allergic reactions, blood draws, blood and platelets transfusions, Broviac dressing changes, daily cleanings /flushes of her port, medications and five rounds of chemotherapy.
One of the hospitals we were at, gave us a diagnosis that Avery was a NED which means no evidence of disease. This meant my daughter was in full remission. We were so happy it was the first time I was able to breathe a sigh of relief. And I thought after five rounds of chemotherapy we had a true miracle. Unfortunately, that only lasted three days. This is when my world started crumbling once again. My oncologist called me with such sorrow in her voice I knew something was not right. We got our second results from a different hospital back. A secondary hospital the Children’s Hospital of Philadelphia, known as chop, called us to inform us that Avery was not NED. She had full body cancer in her skull, entire spine, shoulder blades, upper arms, full pelvis, thighs, and in her bone marrow.
The long-term side effects thus far from her cancer treatments are organ damage, infertility, stunted growth, spinal wedging, cataracts in both eyes, breakdown of her teeth (chemotherapy eats right through the enamel leaving your teeth gray and black), permanent hearing loss. As I mentioned before her teeth wound up with an eminence amount of work. She had 7 root canals, 8 stainless steel caps, 4 white caps, 12 cavities and 1 removal. She has tiny tattoos all over her body, that a permanent from where they had to do the laser proton radiation therapy. Avery must now wear hearing aids in both ears that she gripes wearing every day. She has permanent kidney damage. One shrunk to 25% and the other one is 85%. They believe that to smaller one will continue to shrink and will result in removal in the future.
We also donated her to tumor to science. Thankfully, we did this, because in their research they found out that she had the colon cancer gene. Her body mutated itself before she was born. Neither my husband or I have this gene thank God. So, at age 12 to 13 we will be going for preventative treatment of care for colon cancer. There are 10 types of colon cancer. Ten is the worst, she has number nine. Avery will have several thousand polyps that will have to be removed over a lifetime. We will yet again overcome!!! Avery is an amazing little fighter.
Despite all she has gone through, Avery is an amazing loving and giving child. If she saw, or heard another child upset or crying, she would say, “mommy can we please give them one of my toys or stickers to make them happier.” The funny thing is she gave all her brand-new toys that she just got a way to make them happier. She was known on the floors as the sticker and toy girl because she always gives out stickers to everybody every day and toys.
My daughter, Avery is a gift from God, to us, and everyone she meets. She always brings a smile to the face of anyone who meets her. She has taught me so much. How to persevere, live in the moment, and love on a deeper level. Fortunately, through an unfortunate circumstance, this experience with my daughter has renewed my faith in humanity. There are so many selfless people out there in this world, that love to just give, and not ask anything in return.