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.