In honor of October being National Visual Impairment Awareness Month, we are privileged to be able to share Max’s story! Thank you to Max and the S family!
The morning of March 19th, 2018 we had the amazing blessing of becoming the forever family of Max Xiaonan, who had fought, at his short age of 4 years old, a battle with cancer (bilateral retinoblastoma), he had won the battle but had lost one eye, his left eye. He received numerous treatments, including systemic chemotherapy and doctors in China were able to save his right eye, though it was left with poor vision.
Our precious Max came home with us March 30, 2018 and we started the journey of becoming his new family, his new life. He is always smiling and happy! Asking all kinds of questions and wanting to touch and smell everything! Haha!
After getting adjusted a little bit we took Max to his first eye doctor appointment, which went well, the doctor said he could see there was something but couldn’t tell if it was scaring or something else, that Max needed to see a specialist and be checked under anesthesia.
The day was finally here…his first EUA (Examination Under Anesthesia)…as a side note when he was asked what kind of smell he wanted for his mask (they have different smells for the kids: bubble gum, strawberry, cotton candy, etc.) he said chicken!! I want chicken smell)..LOL.
Anyway the EUA was supposed to take 30 to 45 minutes but instead took 1 hour and 15 minutes and when the doctor came into the room he had two more people with him and their faces said it all…Max had 4 active tumors! 4! And they were big ones!
Wait..what???..our son..the little one we just brought home??!..the one who barely understands English and is just learning to love his family?! The one who asks why daddy’s face is dirty because he doesn’t understand that men can grow a beard?! ..The one learning to eat cake? The one who can’t eat ice cream because is too cold?! Noooo! He can’t start fighting cancer again….not again!! He is only 29 lbs ..4 years old and 29 lbs! He can’t fight cancer when he is so tiny!
Well..here we go…July 30, 2018 we traveled to St. Jude in Memphis, TN, August 1st we got his second EUA, doctors couldn’t understand how he could even see because his eye was so damaged but they said they were going to do their best to save it as it was his only eye. They started treatment right away, they also ran tests looking to see if the cancer had metastasized, which it hadn’t , thank God!.
Every 10-14 days we went back to St. Jude in Memphis for treatment, or to the ‘Big House’ as Max calls it…because to him it just looks like a big house and it has toys everywhere, the nurses and staff love Max…he always has a smile or something funny to say…oh!..always hungry..wanting to eat chicken and discovered St. Jude’s cafeteria tater tots! Ha! His favorite! The volunteer from the EUA playroom said she has never seen a kid as full of joy as Max, even when his eyesight was getting worse and worse he was still so happy and didn’t mind playing and just living his life to the best!
Unfortunately, September 19, 2018, yes, six months from Gotcha Day! We got some sad news, Max had some new tumors, these ones were looking really bad and the doctor was really concerned that the cancer could spread to the brain if we didn’t enucleate his remaining eye soon enough. Although the decision was really hard, we didn’t want to take the risk of metastasis so we scheduled the surgery for October 10th, 2018.
We went back home for the next two and half weeks and decided we were going to help Max experience everything we could and give him all the fun visual memories so that he could remember all that before going blind. With the help of family and friends he got to see a police car, fire station, fire trucks, went to Branson, MO and the amusement park, got on a monster truck, he saw a Christmas tree, we painted pumpkins, we celebrated his birthday (early) so he got to see his cake and blow his candles. He had so many good memories! We pray he will never forget them!
On October 10, 2018 Max had enucleation of his remaining eye, which left him completely blind, he has reacted amazingly well, he is as joyful and perky as he has always been! Nothing stops him! Not even a week after surgery he was bouncing and jumping around singing and praising God singing one of his favorite worship songs.
Although he has a few bad days, where he feels a little overwhelmed, the majority of the days are excellent, our child is teaching us that no matter the circumstances we have the choice to be happy and play or to stay in a corner and cry and even though doctors and experts have told us that we saved his life by adopting him, we believe that God brought Max here and in the right time for a reason and our son will show the world living his life as a testimony.
In celebration of National Visual Impairment Awareness Month, Madison Adoption Associates is pleased to be able to offer a grant of $1,000 to any family who applies, contracts, and commits to adopting a child with a visual impairement during the month of October. Please email lindseyg@madisonadoption.org for more information.