We are still here at the hospital and Gus has developed more infections and problems. Along with C. diff., Gus has developed mucositis, mouth sores from the mucositis, and an infection at his g-tube site. He has been having extremely painful urination for several days now. Urine cultures show no sign of a urinary tract infection and Christmas morning blood started showing up in his urine. Because it was a holiday, there was no ultrasound tech working and doctors said that Gus’s case was not severe enough to bring someone in. Nice, right. He did get an ultrasound yesterday and everything looked good, so by process of elimination, the bleeding is either being caused by a virus, mucositis, or one of the chemos. If it’s a virus, we will know in a few days and there isn’t anything we can do for that. He is getting lots of IV fluids in order to try and flush any virus or bacteria out of his bladder, kidneys, and urinary tract. Urinalysis came back with a moderate amount of blood yesterday and less today, so it looks like he’s getting better. Along with all the antibiotics he is on in order to cover the multiple infections, we are giving him morphine and lortab for pain and pyridium for the painful urination.
CURE Childhood Cancer along with the Kindred family and Mary’s Merry Christmas Foundation served a huge Christmas Dinner and gave all the kids a huge Santa bag full of toys. Audrey also got a big bag of adorable clothes. Christmas morning, we woke to the sound of Santa visiting each room of the Aflac unit. He brought with him another bag of toys for Gus. We asked Gus if he wanted to see Santa and at first he said no, but then he heard Santa’s jolly Ho! Ho! Ho! and decided he would like to see him. Santa came in and talked with Gus, opened the bag of gifts, and placed them on his bed. Later in the day, Gus started feeling a little better and was feeling up to opening and playing with some of his new toys. It stinks that he has been feeling so bad during Christmas, but it’s really wonderful that all these amazing donations of toys were made to help distract him when he is feeling up to it.
We decided to wait until we went home to really do Christmas. We were blessed with so much this Christmas that we didn’t think it was a good idea to haul it all to the hospital when Gus wasn’t even feeling up to doing anything. This way we can really take our time and enjoy opening all the gifts we’ve been blessed with this Christmas. Gus will be feeling better and up to the task of playing with all his new toys too. I went home and set everything up like Santa had been there. I can’t wait to see his reaction.
My favorite moment this holiday season was the snuggle session I had with Gus and Audrey on Christmas day. It was getting dark and we watched the snow falling. Both of my little birdies nestled up to me and quietly dozed and I was able to reflect. It was exactly 6 months ago on June 25 that we found out Gus had a brain tumor. It’s still very hard to look at photos of him before all this, running and smiling, it breaks my heart every time. Our lives are so different now. Every week is a rollercoaster. We can’t make plans for anything past a few days because we really have no idea what is ahead for our family. Tony and I have found strength we never knew we had and our little 2-year-old is the strongest person we know. He’s our hero. He is where we get our strength to soldier on. There have been times when the stress got to us and we have definitely had our share of fights, but through it all we remain united in the love we have for each other, the pain we share in watching our little boy get weaker and weaker, and the deep love we have for our sick little warrior. And then there is our precious little ladybug Audrey. I truly feel she was sent to us during this dark time to bring us the light we needed. She is pure joy and happiness.
New hope comes with the arrival of the New Year. Hope that Gus will get better and his cancer will disappear, never to return. Hope that Gus will be made whole again and we will get to see that running and smiling little boy we miss so much. Hope that we will be able to return to some kind of a normal life soon.
We could not have made it this far in our journey without the love, support, prayers, kind words, hot meals, and financial assistance from all of you. We will never be able to show you all how much your kindness has meant to us. Thank you. Our holidays would not have been as merry or bright without the gifts bestowed on our family from the Murphy Candler Mom’s Club, the Children’s Wish Foundation, the Cancer Warriors, and the Brain Tumor Foundation for Children, the Polous Family, and the Blakely Family. We were truly blessed this Christmas.
It looks like Gus’s counts are on their way back up and as long as nothing else develops over the rest of the day, we will be able to go home tomorrow. He will still need IV fluids for another few days, but we can administer those at home.
We hope everyone had a wonderful Christmas and have a Happy New Year. Take the time to hug and kiss your children and stop for a little while and give them the attention they deserve. Most importantly, love each other.
XOXOX Erin
