I hope everyone is having a good year so far. Last year was pretty awful for a lot of people and I’m glad to put it behind us.
We were lucky enough to have three weeks at home in between our hospital stays. We were discharged from Scottish Rite on the 29th just in time to ring in the new year at home. Gus was sent home on IV hydration fluids through the weekend. His urine culture finally had come back positive for BK virus. This is what was causing the painful urination as well as blood in the urine. The IV fluids are helping to flush out the virus. This virus is actually very common and normal healthy people don’t even know they ever have it; it is painful and causes more problems in immunosuppressed individuals. In my reading and research I read that it is possible that 80% of the population have BK virus. Unfortunately there is no treatment for BK virus except to try and flush it out of the system.
We celebrated Christmas as soon as we got home for quite a few days. Gus was still recovering from all of his infections and needed lots of rest. We would open presents a little bit at a time and of course Gus wanted to play with everything as soon as he opened it. He got so much stuff; the presents actually lasted for a few days. It was a lot of fun and Gus got pretty good at opening presents.
While at home we had multiple clinic visits at both Scottish Rite and Egelston in preparation for his next round of chemo. I’ll get to that a little later. Gus had another MRI on the 7th along with a lumbar puncture. He did fine with the MRI and they were unable to get any fluid from the LP. I was very upset to find out that they tried more than a few times. They stuck him 10 times! Not cool. He was very sore obviously. This is not the first time they were unable to get fluid from an LP. They think it’s probably because of his shunt.
We had an appointment on the 10th to go over the MRI with Dr. Mazewski but we, like the rest of the Atlanta population, were stuck at home due to the snow and ice. We were stuck at home through Thursday. It was great being at home for that chunk of time with nowhere to go. Tony was able to work from home and the 4 of us got a lot of quality time together. It was great to just hang out and get to play with Gus. Thanks to my friend Scott, we had a freezer full of food to get us through that week too.
We made it back to the clinic on the 14th to make another attempt at collecting some spinal fluid. This time though I told them they only get 3 tries and if they couldn’t get anything, tough. They of course could not and Dr. M said that we would try again after the next round of chemo. We did another urinalysis to check if BK virus was still present and we were able to discuss his MRI with Dr. M. We used his first MRI before we started chemo as a comparison. There is a significant shrinkage of all cancer everywhere! His brain only shows small little specks here and there and his spinal cord shows about a 75% shrinkage since we started chemo! This is good, we are making progress. The chemo is working and there is no sign of new growth. Dr. M said she was ecstatic about his progress, in fact, she said she was “ecstatic” more than once and we’re ecstatic that she’s ecstatic.
We were also able to talk to Dr. M about getting Gus involved in rehab so we can get him walking again. While we were at home he started crawling again and he is doing awesome! He is still really wobbly, but he isn’t afraid to crawl. He’s even trying to stand up on his own. His toes point down and his heel chords have grown extremely tight due to atrophy as well as vincristine, one of the chemos he was getting. That is the main thing keeping him from being able to stand up. Vincristine also is known to cause a pins and needles feeling on the skin and that could be another reason that he is wary of putting his feet on the ground. The desire to be mobile though is there and as long as he’s got that motivation, the rest should come along with practice.
On Sunday we took Gus up to Bobby G’s in Alpharetta. They are a Chicago-style eatery. They do a football pool and give half of the money to a charity. They chose our family as the charity this year, what a blessing! They are obviously a Chicago Bears bar and everyone was decked out in their Bears gear. Once Gus got used to the loud volume of the game, he had a great time. They introduced us to everyone and explained Gus’s condition and then passed a bucket around for additional donations, so amazing! The generosity and warmth of these people is incredibly overwhelming. I can’t put into words how blessed we feel and how grateful we are. Big thanks to Matt Paula for arranging everything. Their pizza is incredible, traditional Chicago-style thin crust pizza. I’m getting hungry just thinking about it. It was so wonderful to meet all the caring and generous Bears fans! If you’re in the area, you’ve got to go!
We checked back into the hospital on Wednesday for Gus’s final round of chemo. This is a very different ballgame though. We’re at a different hospital and the chemo is different. I will post all the details and what we’ve been through so far in a few days. In the meantime, keep praying that Mighty Gus can continue to muster up enough strength to play for at least a few hours a day. Playing with his toys and books brings him so much joy.
Thanks for all the love,
Erin
