There isn’t much news, but I wanted to post what we do know. We took Gus in on Monday for a spinal tap and thankfully they were able to get what they needed. His blood work came back with a shockingly low platelet count and we have stopped his maintenance chemo. After further discussion with Dr. M we decided to keep him off this chemo as we will be starting a new treatment and his body needs to be clear of the old drugs before we can start a new regimen. Gus has been fighting a cold since Saturday. He developed a low grade fever on Sunday, but only for a few hours. He has a runny nose and has now developed a cough. It does not seem to be a bad cold as he has continued to want to be active and play.
We are taking every day as it comes and trying to keep the home front as peaceful and comfortable as possible. I feel like things really didn’t hit me until yesterday. I’ve been pretty calm about the situation and was starting to worry that I had become numb to it all. Then Dr. M called me yesterday to tell us that his spinal fluid came back positive. None of us were surprised by the news, but definitely disappointed. I am still calm, but now my heart is so heavy and I feel a deep sadness. This news made it real to me. Gus has relapsed. Even though we are weary, we will continue to do whatever it takes to fight this battle.
Dr. M is conferencing with the board of brain tumor doctors today about Gus’s case and we will be meeting with her on Monday to discuss our treatment options.
New treatment means lots of changes for our family. Gus will get sick not only with side effects from the new drugs, but his counts are going to drop and he will probably be sick a lot, which means possibly more stays at the hospital. Of course all of this not only takes a toll on Gus, but on Audrey too. She gets less of our attention, has to spend more time away from us, etc.
Our focus now is preparing for our upcoming trials and whatever the future brings our family. We are trying to pull funds together so we can drive down to Florida to visit family for a week or so to recharge. Once Gus starts his new treatment, we will be unable to travel and we really miss our family. We are also looking into trying to get an Ipad for Gus. He absolutely loves them and it would be a wonderful distraction for clinic and whatever else he has to endure.
We send out our thanks members of our “local support team” Mary Bradley, Jane Porter, Suzie Ruddle, and Deb Beacham. You are all amazing women and we are blessed to have you fighting in our corner. Thank you all for keeping our family close to your hearts and in your prayers. We love reading your kind words of support in the guestbook, so don’t forget to leave us a message.
I will post if there are any new updates this weekend.
xoxo Mama E