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

It’s been a while since my last post. As most of you know, things are crazy busy for us and it seems like there is always a new issue developing with Gus that keeps us from having an uneventful day. In the cancer community, that is what we hope for, uneventful, boring days. Gus’s CVL was replaced in surgery on Tuesday the 7th and we also replaced his g-j tube with a mic-key button. During the surgery GI docs also did an endoscopy and a biopsy of his stomach to check for GI issues. Docs said his stomach and intestinal tract look great and nothing bad has come back from the biopsy.  Even with the infection and the surgeries, Gus was doing great. His counts were up and he was feeling good, the vomiting even subsided for a few days. We soaked up the happy times and enjoyed every minute of playtime.

Wednesday the 8^th we started chemo and the vomiting returned along with the sick little boy we have become so used to seeing. We decided against a foley catheter this time because we’ve had so many issues with them in the past four cycles. So we had to change his diaper every 2 hours. He developed some kind of rash or burn as a reaction to his bandages right after surgery. It may have been something they used to prep him for surgery that caused a reaction with the tegaderm bandages on his skin. He was given sylvadine cream and we changed his bandages to opsite. We finished up with chemo and were discharged on Wednesday the 15^th. He was already looking very puny before we left the hospital.

We spent our time at home getting the Christmas tree up and trying to get some holiday shopping done. Saturday evening we piled the kids in the car and took them to see the Christmas lights at Emory Johns Creek. Gus got a pretty bad nose bleed in the car and we had to pull over and pull him out of the car to stop the bleeding. Sunday morning he got another bad nose bleed and this one took an hour to get under control. He swallowed a lot of blood on these two occasions causing him to be sick a lot.

Monday we took him to clinic assuming he would need platelets and probably blood and he did. I was shocked to find out how quickly his counts had dropped over the weekend. He had already bottomed out! He has never dropped this quickly. This seems to be the norm after multiple rounds of chemo; the kids just get worn down. After a full day at the clinic we got home and within an hour, Gus developed a high fever. Tony took him to the ER and we were admitted. They immediately started him on antibiotics and yesterday he was in bad shape. He was having really bad diarrhea and horrible pain. He screamed and writhed around in pain for hours and we finally got morphine on board to help manage the pain. Cultures came back positive this morning for C. diff. This generally happens when antibiotics wipe out all the good bacteria in the gut and Clostridium difficile bacteria take over causing major diarrhea and severe abdominal pain. The good news is that we have determined the source of the infection and have immediately taken steps to treat it. The bad news is that Gus is quarantined to his room and no visitors are allowed until his infection clears up.

So it looks like we’ll be spending this Christmas at the hospital with Gus. I have to admit that as hard as I try to remain positive and upbeat about spending the holidays in a Children’s hospital, there is a part of me that is very sad to not be able to have Christmas at home with my children and my husband.  I have been told by the doctors and nurses that the children are given a great Christmas here and that we should be happy that we don’t have to cook because meals are provided for all the families. It’s not home, but we have to do what is best for Gus and that means spending Christmas here. We are going to still make this a rockin’ Christmas for Gus at the hospital and then when we get home we can have a second Christmas and help Gus and Audrey open presents from all the wonderful people and organizations that have benevolently bestowed upon our family.

We typically are not able to go home until Gus’s counts start to come back up and who knows how long that is going to take, hopefully not more than a week. The bone marrow transplant team at Egelston has set up our schedule for our final round of chemo. This round will be completely different from what Gus has been getting.  His treatment will consist of high-dose chemo followed by stem cell transplant where Gus will receive an infusion of his own previously harvested stem cells in order to help his counts recover. He has an MRI scheduled for January 7^th, our next round of chemo starts January 19^th, and stem cell transplant is scheduled for January 27^th.

Please continue prayers that the cancer is completely wiped out soon so our family can begin to recover from this horrible illness. Thank you.

Merry Christmas,

Erin