Gus had a blast at Sesame Street Live! We got there pretty early because we weren’t sure what to expect. Gus is still unable to walk and I’m in no condition to be carrying him around, so we brought him in the stroller and were able to check the stroller right before the show and carry him to our seats. Unfortunately, by the time the show started Gus was asking to go bye-bye. He sat on my lap, snuggled with his blankie, sucked his thumb, and watched the first half of the show with no problems. Once the lights came up for intermission though, he was moaning and asking to leave again. So we did. All that stimulation takes a lot out of him. He did great though, no meltdowns or tantrums, he’s such a trooper.

The rest of the weekend was nice and quite for us. Tony and I had been instructed by Gus’s doctors to get flu shots, so we went ahead and got it out of the way. I cleaned, did laundry, and packed for the hospital. I also tried to tackle the giant pile of hospital papers and unopened mail that had slowly been taking over our kitchen table for weeks. Of course to our dismay, I found an overdue water bill from the second water leak that occurred while we were still in the hospital with Gus. The first water leak produced a $2,000 bill and now for the second leak our bill was $900. Yikes!

Gus started crawling quite a bit, motivated by toys he wanted that were out of his reach. To our delight, he is now able to crawl small distances on his own. It is definitely hard work for him and I can’t help but watch him with a big smile while holding my breath. It’s a proud moment for us. By Sunday night, he was pulling himself up on the couch from his wagon. Monday morning he pulled himself up into his bed with some minimal assistance from me. He’s doing awesome!

We checked back into Scottish Rite for Gus’s third round of chemo on Monday afternoon. Docs are still very happy with his progress. One of the nurses nicknamed him “The Ox” because he continues to take whatever they throw at him. He isn’t eating or drinking much and Dr. M says that in addition to taking away appetite, chemo melts their taste buds and makes food taste different. She also said that they don’t really like certain textures anymore. She suggested trying spicier foods such as Mexican and Italian and crunchy items like chips. So we got a bag of Jalapeno chips and sure enough, he ate half the bag!

His chemo treatments have been the same, but it seems like he is starting to get a little worn down from them. He is sleeping a lot more and vomiting a lot more as well. He is still in good spirits when he’s awake though and we are continuing his physical therapy while we are here. We are scheduled to be here until Monday, so just a few more days and we’ll be home again.

We are still undecided about the second half of his treatment. Dr. M is not sure yet whether or not we will be transferring to Egelston and beginning the 3 rounds of high-dose chemo and stem cell transplants or staying here at Scottish Rite for 2 more rounds of the same treatments he’s been getting. We are going to wait a few weeks to let the chemo he’s getting now do its job and then another MRI to see if cancer has shrunk, remained the same, or spread. Tony and I have a good feeling that tumors have shrunk. We have been able to take him off of a lot of the medications he was on for pain management due to the tumors on his spinal cord and he’s moving around a lot more without major pain.

We are coming in on the final stretch until baby girl arrives and like any mama bird would, I’m trying my best to plan for things. It’s really hard to know where we are going to be with Gus when its time to have the baby. So we are just going with the flow and taking each day as it comes to us, doing the best we can.

We are looking forward to the upcoming fundraiser at Meehan’s in Sandy Springs. It will be great to see all of our friends, old and new.  Thanks to the folks at Magic Beans for sending Gus a finger puppet theatre and finger puppets. He LOVES it! Thanks to everyone who has donated items, funds, and time to the fundraiser. Your generosity is much appreciated from our family.

xoxo Erin

Thanks to everyone who has been keeping up with Gus’s progress and keeping our family in your thoughts and prayers. I wish I could keep up with the e-mails and phone calls, but we are SO busy. So please don’t take it personally if I haven’t had the chance to respond to your voicemail or e-mail. We love you all.

We were finally discharged from the hospital last Thursday. Docs wanted to make sure fever did not reappear and that his blood counts were on their way back up. Our stay was longer than we anticipated, but we do understand that it is all for Gus’s well-being, so whatever it takes. He still has a minor infection at his g-tube site that he is taking antibiotics for, so we got some extra time at home before the next chemo cycle. Hooray!

We continued to give him large infusions of neupogen through the weekend in order to super-boost his white blood cells in preparation for his stem cell harvest on Tuesday.

Saturday morning I volunteered along with my gal-pal Marisol at the 12th Annual William’s Walk & Run Fundraiser for the Brain Tumor Foundation for Children. It was great to see all the loving family and friends supporting such a wonderful cause. Marisol and I already decided we need to get a team together for next year.

Monday we had our first visit to the Egelston clinic. This is where Gus will be during the later chemo treatments involving stem cell transplant. We had a quick visit just to check his counts and we were given the thumbs up to come back on Tuesday for the harvest. While we were there, CURE Childhood Cancer was also there and they gave us passes to the live Sesame Street show at Philips Arena on Friday! I am thrilled for this opportunity to take Gus and the timing is perfect.

We arrived at the Egelston clinic early Tuesday morning and several blood tests and labs were run before they started.  Gus’s stem cells are collected through a process called apheresis. His central line is hooked up to a large machine that pulls his blood out, separates and collects the stem cells, and then returns the blood back to his body through his other line. It’s pretty incredible. The process took a few hours and Gus did awesome. He took a good nap during the majority of it. Once the cells are collected, they are then frozen for his future use. They were able to collect all the stem cells needed for the three transplants he will need after the three rounds of high-dose chemo.

Wednesday, Gus had his first visit to the dentist. It seemed a bit early, in my opinion, but the docs want full exams of everything. They want to make sure there are no abscesses or cavities, etc. before we start more chemo. I found an awesome pediatric dental group, Gwinnett Children’s Dentistry. They were soooooo nice to us. I had earlier explained Gus’s diagnosis and everyone was very accommodating. Gus of course was very scared about the whole situation and not very cooperative and everyone was very patient and understanding. No cavities and everything looks great. They gave Gus lots of toys and stickers. There was even a person dressed as a giant tooth! Gus got a kick out of it and was high-fivin’ the giant tooth. They took lots of pictures and Gus even let the tooth hold him. I am going to try and get copies of the pics. When we left, all of the staff gave us well wishes and gave me a big bouquet of flowers. They helped us out to the car and told us they would keep us in their prayers. I can’t tell you how awesome it made us feel.

We have been working with Gus at home trying to get him more mobile and use his legs more. He currently cannot walk still. His trunk strength is getting better every day and he can sit himself up unassisted for several hours. Our new goal is to get him crawling again. Over the past few days we have been able to get him to crawl on his own a few feet. Being home and in his own environment is extremely beneficial to his therapy. Tony is really great at getting him to work and use his muscles. Unfortunately he has little to no interest in any food or drinks. He is getting all of his nutrition through formula in his g-tube and he is tolerating his feeds great.

Tomorrow should be super fun for Gus and our pals Lucas and Jane are coming too!

We start our next round of chemo on Monday and hopefully it will be uneventful and boring.

For those of you that are unaware, our Meehan’s family is hosting a fundraiser for our family to help with medical bills and expenses, etc. The fundraiser will be at the Sandy Springs Meehan’s on Thursday, September 30 starting at 6 pm. There will be live music, auctions, etc. It’s going to be a fun night. For all the details go to http://101concepts.com/meehanssandysprings/guzzle-for-gus . If you are not able to make it and still want to help out, you can go to http://augustusthemighty.info/please-donate/ .

Thanks to my little sister Hillary for the gift card for food and hospital expenses, my wonderful gal pal Jane for donating a dresser to us for baby girl’s room, Cure Childhood Cancer for the Sesame Street Live tickets, Gwinnett Children’s Dentistry for the beautiful flowers, and all our friends working on the fundraiser at Meehan’s. Thanks again to all of you keeping our family in your thoughts and prayers.

 Erin