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

So in between all of the treatments and clinic appointments, we have been spending every weekday at the Marcus Center. Gus was finally given the approval by insurance to start treatment in the eating disorders program. He is in the “day patient” program, meaning we are there Monday thru Friday ALL DAY.  He has completed 9 of the forty days of treatment and he is doing incredible! His progress has been so quick that we are all amazed! Of course this is still the beginning, its going to take a LOT of work to get him to the point where he is feeding himself normal food. He is eating pureed food during his sessions and has begun eating cookies and cereal at home. This new schedule has been really tough on us. Its almost as exhausting as being in the hospital. If we can continue making progress though, its worth all the sacrifices.

No one is certain as to how long it will take the stem cells to boost his platelet count OR if it will even work. The “guesstimation” is 2 weeks, so hopefully we will get 2 solid weeks of treatment at the Marcus Center before starting a new chemo regimen.

I also wanted to get the word out that Gus is being honored by a whole team of shavees this year raising money for St. Baldrick’s. Please take a few minutes and watch this video http://youtu.be/oBMd_CKEyIY

Then go this link http://www.stbaldricks.org/teams/mypage/81717/2013 and donate what you can to support childhood cancer research. Think of Gus and what he and our entire family have been through, I would not wish it on anyone. We must find a cure!

Thanks!

xoxo Mama E