As I said in the last post, Kaytruda is working, but it is causing a lot of mobility issues. Kelly can't do stairs or walk independently, so we have been making some adjustments to accommodate those things. However, we've been blessed with some technology that has made life much easier!
Just as stairs were starting to get hard, someone from church came over, and realized that a ramp would make it easier for mom to get into the house. The next weekend, while mom and dad were at Dana Farber for an appointment, a team of people showed up with lumber, tools and willing hands. By late afternoon, we had a beautiful ramp, which helped mom walk up to the house, and a few weeks later, for the wheelchair.
As walking has been getting harder, she has needed to start using a wheelchair more. We've been gifted with a series of wheelchairs, first from the Casillis, then from the Greeleys, then from some neighbors. This most recent wheelchair is a red motorized wheelchair. She loves how easy it makes it for her to move around the house, go down the driveway, or roll around the farmer's market. Noah created a (sort of) portable ramp so we can roll the (very heavy) chair into his car in case mom needs to roll around somewhere other than home. However, we keep reminding her to turn down the speed and watch where she is going.... it has inspired me to relearn the fiddle tune "The Flying Wheelchair" (the tune starts at 1:30 on the video).
We've also been gifted with a hospital bed that our neighbors posted on front porch forum just days before we made the decision that doing the stairs in the evening was getting too hard. Daddy has been sleeping downstairs on the couch so that he can be nearby at night in case mom needs anything.
Having everyone home has been a help too. Elizabeth is still holding down the fort, but is able to have a bit more backup now that Noah is home from England and I (Sarah) am off from teaching for the summer. With more of us around, we are able to always have someone with mom to make sure she is able to safely move in and out of her wheelchair when she needs to.
It has been hard to adjust to all of the changes, but between the new equipment and the extra people, we are figuring out how to help mom keep doing all the things she loves to do.
In April 2016, Kelly was hospitalized after a seizure, and was diagnosed with glioblastoma, a type of brain cancer. On September 17th, 2017, Kelly passed away at home, surrounded by a houseful of people crying and hugging and laughing and eating. This blog has traced our journey through this cancer, and will continue for at least a few weeks as we begin grieving the loss of this amazing lady.
Friday, July 7, 2017
Wednesday, July 5, 2017
Kaytruda
It seems that Kaytruda (the experimental drug we talked about in the last post) is working! Kelly had a brain scan on Monday, and today she had an appointment with her doctor to find out the results. The tumor seems to be about the same size, or even a bit smaller. We had been seeing some of the negative short term effects of Kaytruda, so it is great to know that they long term effects are exactly what we were hoping for.
Since she started Kaytruda, Kelly has been having a harder time moving around. When Kaytruda is working, it often causes "pseudoprogression", in other words, it makes it seem like the tumor is getting worse, even if it isn't. In fact, it is just the Kaytruda doing its job of attacking the tumor. This positive brain scan confirms that "pseudoprogression" is why Kelly has been having a harder time with mobility.
Last month, Kelly's mobility was bad enough that she and the doctors decided to skip a dosage of Kaytruda until this scan, just to make sure it was working before we continued. Since it is working, she went right from her doctor's appointment this morning to the infusion lab, where they gave her the next dose of Kaytruda this afternoon.
Of course, if you've been at the hospital most of the day getting good news and getting treatments, it's important to get a little snack before you go home... and the hospital has delicious tiramisu!
Since she started Kaytruda, Kelly has been having a harder time moving around. When Kaytruda is working, it often causes "pseudoprogression", in other words, it makes it seem like the tumor is getting worse, even if it isn't. In fact, it is just the Kaytruda doing its job of attacking the tumor. This positive brain scan confirms that "pseudoprogression" is why Kelly has been having a harder time with mobility.
Last month, Kelly's mobility was bad enough that she and the doctors decided to skip a dosage of Kaytruda until this scan, just to make sure it was working before we continued. Since it is working, she went right from her doctor's appointment this morning to the infusion lab, where they gave her the next dose of Kaytruda this afternoon.
Of course, if you've been at the hospital most of the day getting good news and getting treatments, it's important to get a little snack before you go home... and the hospital has delicious tiramisu!
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