We have definitely gotten back into the groove of living at home. Gus is doing great. He is happy most of the time and beginning to display the normal signs of being a toddler. He can throw quite the tantrum and learning to share has become a new struggle. These are good problems to have though.
We have had a good month all in all. We were finally able to make it to Flashes of Hope. This is an amazing program offered for children with cancer and their families. They take professional black and white photos of the kids with their families for free. So I was finally able to get some pictures of me with Gus and Audrey. I can’t wait to see them. Gus was able to make another trip to the zoo, this time alone with just Tony. They of course had a great time. We also made it to the big St. Baldrick’s fundraiser at Meehan’s in Sandy Springs. They had over 60 people shave their heads to raise money for childhood cancer research. It was a lot of fun and there were a lot of wonderful people there that were so happy to meet Gus. On St. Patrick’s Day I was feeling pretty brave and I took the kids to Meehan’s in Vinings to see the Irish dancers. The kids did great, Gus really enjoyed the dancers, and it was awesome to see the old Meehan’s gang. We have also been back to Scottish Rite several times to visit our buddies Bo and Aidyn and bring their families some home cooked grub. He absolutely LOVES going to visit his pals. This past weekend, CURE childhood cancer asked if they could use Gus, the handsome little cherub that he is, in their promotional photos for the company. So he posed for photos with a handful of other kids ranging in age from 4 to 18. I’m looking forward to seeing those pics too!
Gus still has 4 to 6 appointments a week, but it seems to be getting easier as we get used to the routine. He has now made it 2 1/2 weeks without needing a tranfusion and he is now starting to make his own platelets! Yay! He is still vomiting 1 to 4 times a day and is on continuous anti-nausea meds. We’re not sure why this is still happening. His gag reflex is easily triggered and this accounts for the majority of incidents. If he laughs too hard, he gets the hiccups, and then he vomits. If he sneezes, it triggers him to vomit. Poor buddy. His hair has started growing back along with eyelashes and eyebrows. Its all coming in fast too! Double Yay! He is also doing great in therapy. They made some boots for him to wear that stretch his feet slightly. We started slow with them and put them on for a few hours a day and he now sleeps with them on all night. I’m so proud of him for doing this. He is crawling all over the house and even trying now to climb up onto the couch. So he is definitely getting stronger every day and his therapist is very happy with how fast he is progressing. Woo hoo!
Our next big hurdle is getting him eating again. He drinks water and on occasion, I’ve been able to get him to drink some juice. He asks for food and says he’s hungry, but when I bring him food, he doesn’t want it. Sometimes, he’ll chew a bite and then spit it out. Sometimes he will actually eat a few bites and then three minutes later, he throws it up. I think his muscles are weak from not eating and using those muscles for so long. He’s afraid to swallow the food because he knows its hard for him. We are probably going to have to get him involved in speech therapy to work on eating. There are so many variables with this one that make it difficult. Things still don’t taste right and textures of different food feel weird to him. This is definitely going to take some time and I’m not going to push it. I want eating to be enjoyable for him. Thank goodness for his g-tube.
We did get the green light to go on vacation, so we are planning to drive down to Florida soon to visit some of our family.
So I saved the big news for last. Gus finally had an MRI last week and we met with Dr. Mazewski yesterday to discuss their findings. The good news is there is no new growth, the bad news is there is no shrinkage. They are calling his cancer “stable.” There was no significant change from his MRI in January. He still has small tumors near his optic nerves, near his auditory canals, and along his spine. Did the last round of chemo work? We don’t know. Dr. M explained that it takes longer for the spinal area to show progress, so we may actually see some shrinkage at his next MRI in a few months. She is going to discuss his case with the other docs and they will come up with the plan for the next steps. She was leaning towards home chemotherapy. It wouldn’t be the same stuff he was getting before and the side-effects are much milder. It’s not going to wipe his counts out, but they will take a hit. It will make him fatigued and nauseous. So, I must admit that we were not ecstatic about the news and a little disappointed. Of course I had daydreamed fantasies of a tumor-free, crystal clear scan that I’m sure every parent of a child with cancer has. Oh well, we’ll keep fightin’ the good fight and enjoying those amazing moments with him when he is joyous and full of giggles.
xoxo Mama E