I apologize for the long lapse in an update. I must admit that I have taken a bit of a much needed break from this part of our lives. I am happy to report that we have definitely been busy, but with more “normal life” events. There has been much to celebrate in the past few months.
Gus successfully graduated from the eating disorders program with flying colors. He made such big progress so quickly that everyone was amazed. We are so proud of him for making such huge progress. He now eats all his meals and is off G-tube feeds. IT WAS ONE OF THE HARDEST THINGS WE’VE DONE YET. The program was really tough and we still battle with Gus to eat at almost every meal, but the Marcus Center gave us the training and the support to deal with every situation.
It appears as though Gus’s stem cell transplant has finally kicked in. His platelet count has continued to rise and he began his new chemo regimen of Avastin and Irinotecan at the end of March. So far the only side effects have been a small lack of appetite and a decrease in energy level.
Gus’s MRI in March came with decent results. The new tumor now looks like completely dead tissue thanks to the radiation. The radiologist reported that affected spinal area looks more prominent with new tumor, but Dr. Mazewski could not see a difference, we’re still not sure what to think. His lumbar puncture came back negative which is awesome.
We had a small scare at the beginning of April with Gus. He was acting very strange (sluggish and jumbled speech, falling a lot more than usual) and we thought he might be having a stroke, which is one of the side effects from cranial radiation. We took him to the ER and he was admitted for observation. He woke up the next day and seemed much better, so we think he was probably just exhausted.
A few weeks ago we had an awesome visit from my mom. She actually came to help with the kids. One of my best friends, Marisol, got married and I was part of the bridal party. It was a great opportunity for my mom to get one-on-one time with the kids. They absolutely adore her and had a really great time playing with her and reading books. She was a huge help and we were all sad to see her go.
Things have been good with Gus lately. We are enjoying routine and all that comes with it. My posts here will probably continue to be far and few between as long as Gus continues to do well. For all of you that have a Facebook account, I have started a group page to post pictures and quick updates. Its so much easier for me as I can post from my phone. The group page is called The Life and Times of Augustus the Mighty. It is a closed group, so if you would like to join, just send a request.
Thanks for all the continued support, love, and prayers.
xoxoxo Mama E