I will start with our most recent updates. Yesterday morning we discovered ANOTHER water leak. This one, like the first, is pretty major. The broken pipe is under the foundation of the house meaning water has been gushing out underneath the house for who knows how long. The repair is going to cost thousands of dollars and our water bill is going to be a doozy, AGAIN.
While assessing the water problem, we found a litter of kittens under our porch that had been abandoned by their momma. They looked to be a few weeks old and very hungry. Sadly, one of the litter had not survived and the others seemed like they might be sick. They sure were cute though and Gus and Audrey spent most of the day watching them in their box on the front porch. Tony’s sister Beth has taken them in and is going to find homes for them. Thank you Beth!
Gus has continued on the Novartis drug. Over the course of last week he has had many health issues, leaving us very concerned. His symptoms include: nausea, increased vomiting, really bad headaches, total body weakness, weakening motor control, fatigue, constipation, bone pain, teeth pain, and problems sleeping. Once I reported all of this news at clinic, they wanted to check his shunt again and make sure it was working properly. CT scan and x-rays showed that everything is working fine. So all symptoms are either side effects from the Novartis drug or symptoms of cancer progression. His blood counts are actually pretty good because he isn’t receiving any chemo, so we’ve got that on our side. We decided to hold off on another MRI as long as we can. He is scheduled for May 31, but if he shows signs of deterioration we will move it up. We would like to give the drug enough time to show any progress. I have been trying to find the right balance of meds and a slower feeds schedule to keep Gus from losing weight or getting dehydrated. I’ve also started three journals to keep track of all this information in order to maybe find some answers.
Back tracking to our Easter, we had a pretty good day. It was nice to be home, last year we spent Easter in the hospital. I was excited to be able to play Easter bunny. I’m pretty sure I went overboard, but I couldn’t help myself. The kids had a great time diving into their goodies and finding eggs hidden all over the house. Later, we took them to the zoo with our dear friends, the Porters. We had lots of fun!
The next day we had a loooooong day at clinic as it was Gus’s first day of the Novartis drug. We got off to a bumpy start administering the drug. I put on my ‘momcologist’ hat and stepped in to offer my advice and we came up with a new strategy. We have had lots of clinic visits in between and thankfully the kids are adjusting to our new ‘norm’.
The following Wednesday we sadly took Gus and Audrey to say goodbye to their Grandma Martie at her funeral. It was a small service with a gathering of close family. Our closest friends came to support us and help with the kids and we were so grateful to have them there. Fortunately, the cemetery where she rests is only 15 minutes from our house and we can visit her often. The emotional stress of grieving our loss added to the emotional stress of Gus’s relapse has left us exhausted. We are certainly a little depressed, but the kids keep us going. They are so beautiful and continue to fill our lives with joy as well.
This past weekend, we made it to family camp at Camp Sunshine. Its always nice to get to see the friends we have made along this journey and we always make new ones every time we go. They can relate to our situation and its great to be able to swap information with other parents. Gus was not feeling his best and we didn’t get to do as much as we would have liked, but Gus and Audrey did get to do some painting, drumming, gold panning, and got lots of playtime on the playground. They also had a Wildlife Preserve show with snakes, a small alligator, birds, a turtle, a spider, and a mommy and baby lemur. Most of you know that Gus is nuts about animals. I’m pretty sure this was his favorite part of camp.
Thanks so much to all of those that have put Gus and our family on prayer lists and thanks to all that continue to pray fervently for us through good times and bad. Thanks to everyone that has sent us financial help and words of support. Every little bit helps and we truly appreciate your generosity. Thanks to the Brain Tumor Foundation for Children for their continued support. Thanks to the Amanda Riley Foundation and the volunteers from Kohl’s that came out last week and planted lovely flowers in our front yard. We love them!
Next month is Brain Tumor Awareness month and we have lots of events we are looking forward to. Hopefully Gus will feel well enough to attend.
I have had lots of people ask if they could share Gus’s blog or our story with their friends, their family, or their church. We are happy to share with anyone interested.
Please keep our family in your thoughts and prayers. (We sure could use some good news.)
P.S. Please contact me if anyone wants a kitten or knows of a no kill shelter with space available.