Wow, time flies when you are having an awesome summer! We have been having lots of summer fun since our last update.
We were in the hospital with Gus at my last update. He is now getting feeds directly into his stomach and is having no nausea or vomiting. He has been off all nausea meds for almost 2 months. There have been a few incidents of vomiting but they were triggered by him getting really upset and worked up. We have even been able to bump up his feed rate and give him intermittent feeds. This way his feeds don’t have to run 24 hours a day. He gets 3-4 “meals” a day. He is doing so awesome with it and we are all happy he doesn’t have to be constantly running feeds. He sleeps better at night too because he gets a break.
Once we got back home, we were able to go to the zoo and take the kids swimming with my sister Hillary. Thanks to the Gharib family, we were able to make it to the aquarium. The Gharibs – Jim, Marcy, Eliot, and Jo – are our dear friends from Houston. They were generous enough to purchase an annual membership for the whole family. We are so blessed. Now we can go whenever we want and not have to worry about cramming everything into one visit. If you have children under the age of 5 you know how difficult this can be. Hillary’s visit was so awesome and she got to spend a lot of quality time with Gus and Audrey. We miss her so much and wish she lived closer.
Hillary’s Visit Photos
After Hillary left, we had about a week before our next wave of company. My mom, my sister Haley and her kids, and my brother Travis and his wife Christy and their kids all came to stay with us for Gus’s Birthday Extravaganza. Mom came in first and was able to spend some quality time with Gus and Audrey before everyone else arrived. We were able to make it to Flashes of Hope with my mom and get some pics of her with Gus. Haley and the kids arrived a few days later and we took all the kids to the zoo for Gus’s birthday. This trip to the zoo was special though. I called the zoo and told them Gus’s story and explained how much Gus loves animals. They arranged a private meeting for Gus and his cousins to meet Kelly the elephant and feed her too! It was so amazing to be that close to her. She was very sweet and even showed us a few tricks. Gus was too scared to feed Kelly, so I held him and fed her myself. It was so special and really a once in a lifetime opportunity. We are so grateful to Zoo Atlanta for being so awesome and treating Gus like the little prince he is. Travis, Christy, and their kids arrived the next day. Gus loves his cousins so much, so he was thrilled to have so many of them here to play with. We spent the rest of the weekend preparing things for Gus’s birthday party.
Gus’s Birthday Photos @ Zoo Atlanta
I think I mentioned in my last post that Gus’s birthday last year was not so fun and we wanted to throw him a big party this year because he’s been through so much. I had asked him what kind of theme he wanted for his party, gave him some ideas, and of course he decided he wanted a jungle safari party. Gus and I looked together online for cake ideas and of course, he wanted a tiered fondant covered cake with edible animals. Luckily, Haley has some experience making these kinds of cakes, so she was able to guide me through the process and had lots of great advice.The cake turned out so amazing and Gus’s party was awesome. We had Gus’s party early in the day at Thrasher Park. The day turned out to be a little cooler than usual, sunny, and windy. Perfect weather for Augustus the Mighty! We had lots of friends join us in celebrating this joyous occasion. One of the highlights of the party was a visit from Gus’s buddies at Tebo Dentistry for Kids. Last year Gus had to have a check up before his stem cell transplant and that is when we met the Tebo gang. They were so touched by Gus’s story and have been so supportive. They called me and asked if the Tebo gang could come out and help celebrate. We were thrilled to have Thomas the Crown, Mindy Molar, and Super Tooth join the party and sing a few songs for Gus and the kids. The kids LOVED them (well most of the kids did, I think I saw a few hiding under picnic tables). They also made Gus the first honorary member of the Tebo the Tooth Club. The party was awesome! Gus had an amazing time and was showered with gifts from family and friends. It was truly a blessed day and made it into my top ten best days ever. All the family left in the next few days, its always hard to say goodbye, but I was pooped after the party. It took me a few days to recover.
Gus’s Birthday Party Photos
Gus’s Birthday Video from Tebo Dentistry
Our next adventure was the Race for Research. Our team “The Jedi Masters” raised $1,440 in memory of our dear friend Joe Doyle and in honor of Gus. We were joined by our team members Gavin, Jane, and Lucas Porter, Pam Salvatierra, Rebecca Montgomery, and Mary Ann Bradley. After the race, Gus and I were given the opportunity to get up on stage in front of 2,000 people and share Gus’s story. The Race ended up raising close to $300,000 for brain tumor research. It was a great experience for our family and we will continue to be a part of it in the following years. Thank you to all of you that were generous enough to make a donation to this worthy cause.
Race for Research 2011 Photos
The following weekend, we received our last wave of company, Tony’s father also named Tony and his sister Tammy and her beautiful children Ecko and Kaymen came to visit from Chicago. This was a big deal for us for many reasons. It was my first time meeting the family as well as their first time seeing Gus and Audrey. Although Tony talks to his Chicago family on the phone, it had been many years since they had seen each other. Gus was really excited to find out he had MORE cousins coming to see him. I must admit that I was nervous things were going to be awkward. In fact, it was quite the opposite. It felt like family immediately, like we were picking up where we had left off. Every one hit it off wonderfully. It was such an amazing feeling to watch Grandpa Tony sit and play with Gus and hold Audrey. Their time here was too short and we miss them so much. Tony and I had such an incredible experience reestablishing our connection with his family and we can’t wait to see them again.
Carrasquillo Family Visit Photos
We were finally approved for chemo by medicaid and Gus started treatment on Wednesday. Gus is on the metronome protocol consisting of 5 different medications. He will only be on them 2 at time, so this month he has started with Cytoxan and Celebrex and next month he will be on Temodar and Accutane. This protocol can last anywhere from six months to 2 years depending on its results. So far side effects have remained minimal, but its only been a few days. He’s thrown up twice and that’s been it. There’s a 25% chance he’ll lose his hair again and the nausea will probably worsen. He is also expected to become fatigued in the first month. Ugh! This is harder than I thought it was going to be. I dread every morning waking up and mixing his chemo. I really hate doing this to my little boy. We have to keep fighting though!
Friday was Gus’s first day of school at Pediatria. It took forever, but medicaid finally approved it and I took him in around 10 am. They place the kids in rooms together based on development rather than age. I was proud to hear that he would be with the older kids. I took him in and sat him with the group already involved in an activity. I filled the charge nurse in on all of his details and asked to speak with all the therapists to fill them in on his progress. Speech therapy was in agreement that Gus has a behavioral eating disorder due to his condition and recommended further treatment at the Marcus Institute in addition to the therapy he will be getting there. So I will be working on that application this week. As I was walking out, I peeked in to see how he was doing and he seemed to be doing great. I got in the car and it hit me, I started crying. It was weird, what am I supposed to do now? Well, it looks like I will be able to start up my business again, as long as Gus continues to do well. I made it a few hours and then I had to call to check up on him. He had asked for me several times but was doing fine and socializing with the other kids. I picked him up at 2:30 and they said he wouldn’t nap. He just laid on his cot and sang Twinkle, Twinkle. When it was time to get up he started crying for me. He did great though, they were sooo impressed with how smart he is. So I will be taking him in for the next week to continue getting used to everything and the following week, a bus will come and pick him up in the morning.
This weekend we started potty training Gus. We were actually starting to potty train him before he got sick and of course that was not possible during treatment. So we kind of missed the window with him and its going to be more of a challenge for all of us. He’s a smart kid though and he’ll get it. We just have to continue to stay on top of it and be patient.
So that about wraps up our summer, it totally makes up for missing out on all the fun last year. Don’t forget to view Gus’s photo albums, just click on the links I posted. Gus has and MRI on Thursday and we have an appointment with Dr. Mazewski on the 18th to go over it. Fingers crossed that the chemo has already started working. We hope everyone else had a great summer and we hope the weather cools off soon too.
xoxox Mama E