Gus is doing so good! We have been having a great summer so far. The C-diff is gone and his reflux has been mostly under control. We had brain tumor clinic on Tuesday and met with Gus’s neurosurgeon, Dr. Brahma and Gus’s oncologist Dr. Mazewki. Everyone is thrilled with Gus’s progress and that is very encouraging. Gus’s platelets took a big jump up too! They jumped up over 30,000 in just 2 weeks! So now we don’t have to worry about platelet disorders or having to get a marrow sample, which is where we were headed. This also means that we will be starting chemo again soon.
My sister Haley came up from Florida with our niece and 2 nephews a few weeks ago and they pulled all of us out of our funk. Gus adores his cousins and does so great when they are around. There seem to be these big breakthroughs when he’s around his cousins, its such good therapy for him and I am forever grateful to my sister for bringing them up.We did so much with them and had an absolute blast. We made it to the zoo and Gus fed the parakeets and rode the merry-go-round, both firsts. We made it to the park and the pool twice. Gus had not been swimming since he got sick and I’m pretty sure he would not have done as well if his cousins had not been around. He took his first steps while they were here too! I know all of these things sound humdrum to the average person, but to us these are major milestones. We are so proud of Gus and all the progress he has made, doing it all with a giant smile on his precious little face. Seeing how much he grew in such a small amount of time made us realize how much he needs to be in school. He thrives around other children, he adores them. So we are working on getting him in ASAP.
My other beautiful sister Hillary flew in on Saturday to stay with us for a week and the kids absolutely love her! This is her first time meeting Audrey and only her second time seeing Gus. She is so amazing with the kids and is going to make a wonderful pediatrician some day. She and Gus are having a blast reading stories, working on puzzles, and goofing around. She has been such a big help too. We are planning on heading to the zoo again and we’d like to take Gus to the aquarium too if anyone knows where we can find a discount on tickets. They are so expensive and we just don’t have the dough.
Today GI docs did a scope of Gus’s throat and stomach. We were worried about the condition of his throat due to his vomiting almost every day for a year. Gus’s GI doc, Dr. Lewis also wanted to check the condition of Gus’s stomach. He believes that feeds running into his jejunum might be the cause of Gus’s discomfort. His stomach looked a little red and irritated. They think the tube running from his stomach to his jejunum was taking up a lot of space keeping the acids produced in the stomach unable to drain to the jejunum. This is probably what is causing the reflux. They took out the j-tube and feeds are running directly into his stomach. We are not sure how he will handle this, so we will are inpatient right now just to monitor him. If he can’t handle the feeds in his stomach, then they will put the j-tube back in and we will look for a new solution. So far everything has gone smoothly.
Dr. Lewis is the doc that discovered Gus’s brain tumor. It’s hard to belive that exactly a year ago, we were sitting in the sedation room with Gus waiting to hear the results of his CT scan. Dr. Lewis walked into our room unexpectedly in his gym clothes and turned the TV off, I knew something was wrong. I will NEVER forget that moment, our lives changed forever. It was the worst day of my life, what a nightmare. Within an hour of hearing the news, they took him away from us and he had his first surgery. I remember laying on the couch in the waiting room with the worst headache from crying and numbly staring out into the distance. I remember going into the bathroom and turning into a sobbing mess on the floor, my first of many meltdowns. Still to this day, this whole experience has been so surreal. I look back on our first year of cancer and am overcome with emotion. We have been on a roller coaster, so many highs and so many lows. In retrospect, I can’t help but feel immensely blessed. This experience has brought our family so much closer to each other. Gus has opened my heart so much that sometimes I feel like it might burst. His joy for life amazes me. I am constantly asked by others if Gus is always this happy. They too are amazed at all of his joy, considering everything he’s been through. We have been blessed to have our eyes and our hearts opened to this whole new world and way of looking at life. We have met so many amazing people on our journey. We have been inspired by so many little angels fighting big battles. We’ve made new friends, lost a few, and grown closer with so many others. I cannot express how grateful I am for all of the support all of you continue to send our way. We could not have made it through a year of cancer without you. We love you all so much!
I have recently signed up to run a 5K to honor Gus and my friend Joe and their battles with brain cancer. The Southeastern Brain Tumor Foundation has partnered with the Brain Tumor Foundation for Children in the 12th Annual Race for Research. The Race for Research helps to raise awareness and critical funds for funding a cure for brain tumors and providing support and outreach to brain tumor patients and their families throughout the Southeast. I have formed a team the “Jedi Masters” and we are trying to raise $5,000. The race is on July 23 at Atlantic station. If you’ d like to make a donation here is the link to my fundraising page http://support.sbtf.org/site/TR/Events/General?px=1002592&pg=personal&fr_id=1040. If you’d like to join our team, we’d love to have you.
Gus’s birthday is coming up soon and we are planning on having a big party for him at the park. Last year we weren’t able to really do much for him because we were in the hospital, he actually had surgery on his birthday last year. So this year we want him to have an awesome time! We have lots of family coming in to help us celebrate this joyous occasion and we are so excited!
I saved the best news for last. On Friday Gus started WALKING! He can take 8 to 10 steps without any help. It is so amazing to watch, my heart swells and I tear up. He is so proud of himself and loves to show people what he can do. So now its just a matter of time and lots of practice. Woo hoo! Yay for Mighty Gus! Here’s the link to a video we took. http://youtu.be/Yc9UeYTmWKU So awesome.
Thanks again for all of your continued support and words of encouragement.
xxoo Mama E