Conner joins Chemo Day

We lead a pretty pathetic life when the excitement to get out of the house is to head to the hospital. Conner had been asking to go with us for months. We decided today that we would let him go. He was very intrigued and such a good helper with Alexis.

Alexis's counts came back really great. Her ANC was a whopping 5,230 (a normal ANC is 3.500). Of course we inmediately said this isn't a sign the leukemia is back with elevated white counts, does it? They explained it only means she has a cold and her body is actually fighting it. So, that was great news. This also meant they were able to go up on the methetrexate levels. 

We did talk about the chicken pic as well as reported cases of RSV in Gavin's school. They felt with the arms length exposure she may have gotten and her high ANC, they weren't overly worried and encouraged us to keep her in school, so she can get her much needed physical therapy and other services. So, we will try to ignore our worries and trust that she will be okay (which is easier said than done). 

Grandparent's Day

Gavin had grandparents day at his school. On wed, Conner and I joined him and on Thursday papa and mimi joined him. They did a few songs, of which Gavin proudly sang each and every word. He also decided to go out front and center and display his moves. No stage fright with that kid!

We then did a craft and ate cookies. Such a fun event! 

Seizures

We have been watching Alexis closely to see any seizure activity after her last spinal chemo on Tuesday. Although she was still having a few up to treatment day, we haven't seen any seizures since Tuesday. It is such a relief to not have this impact after this new chemo. I'm hopeful that means that hopefully we can use this new chemo to be effective against the cancer, but not impact her brain.

She has had some impact on her voice again from the Vincristine. It has deteriorated after we got some gain from being off it for over a month. Vincristine will be a long-term chemo through maintenances, so the voice change is something we are going to have to deal with. Alexis's amazing speech language pathologist has been using her resources to talk to different people at different hospitals and specialists about her. She wanted to make certain she was approaching her therapy the right way (basically Alexis can't move her mouth in the proper way with the paralysis). So, the speech focus has been on having her hear the words correctly spoken and maintaining her speech. No progress is being made, and that's something we will have to live with. We are focusing on not backtracking. Her SLP also spoke with a specialist who said it Alexis doesn't gain back her voice that there are surgical options we can explore as well. So glad we have such an amazing SLP that has so many great connections and is already exploring possible alternatives. We have so many people that Alexis has won over, and that is treating her well.

Chicken Pox

We got a call from the nurse at Alexis's school today that one of the other kindergardners has chicken pox. It was found over the weekend, which means she/he was contagious at the end of last week. The kindergartener is in a different class, which is better than the alternative. These two classes don't interact and the only shared space is the playground, but the two classes are never on it at the same time. Although that brings us some comfort, the fact that someone didn't vaccinate their kid, which allows our kid to be exposed to something that might take her life is a little unsettling. With the chemo that Alexis is getting, it has stripped not only her immunity system, but it has made any past vaccinations not effective. Once she is done with chemo, we will have to start at square one with the vaccinations to protect her again. In the meantime, she is vulnerable to not only catching those diseases that she should be protected from, but the lack of immunity means the impact on her would be extreme. Right now, we will just pray that she doesn't catch the chicken pox, so we don't have to figure out how dire these parent's choices to not vaccinate their kid will have on her life.

Grandma's bday

Grandma Phyllis came down for a visit. She stayed until Sunday, which was her birthday. The kids were a little disappointed that her candle came in an omelet and not in cake. I'm not certain they believed it was her birthday, since we didn't have a cake.