Journal entry by Pete Heger —
Greetings again to one and all, all in one!
Cheryl is back home already!
Cheryl was evicted from her hotel yesterday afternoon. It seems there was a change in protocol that we found out about when she checked in on Thursday. The new protocol is only for 3 or 4 days now, not the 10 we were told before. Nice. And they started her out on the highest dose to begin, not the low one and then ramp up. She tolerated the high dose well enough so they did not have to lower it. She was monitored for side effects and those were minor. Slight headache was about the worst of it. They did keep asking her the nonsense questions every eight hours though. This was to determine if the medicine was affecting her nerologically. No major change there, she answered everything top notch.
We did find out that the drug she is taking now by IV, 24/7, is not a chemo drug. For some reason everyone calls it a chemo drug. It is a, get ready, a "Bispecific T Cell Engager" or BITE. Lots of acronyms in the medical world. This is the one that grabs the cancer cell and introduces it to the immunotherapy drug and then the cancer cell bites the dust.
We were told Saturday that they would send her home on Sunday. Homecare was set up to come in on Sunday and get the backpack set up for her which they did. What it is is a small unit about the size of the old Walkman cassette players. In fact they sent two of them, one is a backup for that "just in case" if that nasty Mr. Murphy shows up and decides to wreak havoc. The pump and the medicine fit in this small pack and Cheryl can wear it as a fanny pack, back pack or whatever works for her as needed. The Homecare people will come out to the house now once a week and change out the IV bag, take blood samples and generally go over with Cheryl what is going on. She can meet virtually with her PA so that should mean a lot fewer visits to the clinic unless something comes up.
Another thing we were told is that Cheryl needs a babysitter to be with her 24/7 for at least the next ten days or so to watch for any side effects. That means if both Vanessa and I have to leave for some reason at the same time together we need to get a sitter. Unfortunately we don't pay very well for sitters 😉 but we will make do.
Her blood levels now are a bit low so she is quite tired. She slept most of the afternoon and evening yesterday. That was good because you never sleep good in a hospital. So for now it is lay low and let her body adjust to the meds.
That is about it for an update on this. Glad she is home and resting here. We will get through Phase 3 and see what the Good Lord has in store for her as we go forward. We are praying for a full recovery.
Again, I will post if anything new and or exciting comes up. Thanks again to everyone for following the Journey.
Petey
Cheryl is back home already!
Cheryl was evicted from her hotel yesterday afternoon. It seems there was a change in protocol that we found out about when she checked in on Thursday. The new protocol is only for 3 or 4 days now, not the 10 we were told before. Nice. And they started her out on the highest dose to begin, not the low one and then ramp up. She tolerated the high dose well enough so they did not have to lower it. She was monitored for side effects and those were minor. Slight headache was about the worst of it. They did keep asking her the nonsense questions every eight hours though. This was to determine if the medicine was affecting her nerologically. No major change there, she answered everything top notch.
We did find out that the drug she is taking now by IV, 24/7, is not a chemo drug. For some reason everyone calls it a chemo drug. It is a, get ready, a "Bispecific T Cell Engager" or BITE. Lots of acronyms in the medical world. This is the one that grabs the cancer cell and introduces it to the immunotherapy drug and then the cancer cell bites the dust.
We were told Saturday that they would send her home on Sunday. Homecare was set up to come in on Sunday and get the backpack set up for her which they did. What it is is a small unit about the size of the old Walkman cassette players. In fact they sent two of them, one is a backup for that "just in case" if that nasty Mr. Murphy shows up and decides to wreak havoc. The pump and the medicine fit in this small pack and Cheryl can wear it as a fanny pack, back pack or whatever works for her as needed. The Homecare people will come out to the house now once a week and change out the IV bag, take blood samples and generally go over with Cheryl what is going on. She can meet virtually with her PA so that should mean a lot fewer visits to the clinic unless something comes up.
Another thing we were told is that Cheryl needs a babysitter to be with her 24/7 for at least the next ten days or so to watch for any side effects. That means if both Vanessa and I have to leave for some reason at the same time together we need to get a sitter. Unfortunately we don't pay very well for sitters 😉 but we will make do.
Her blood levels now are a bit low so she is quite tired. She slept most of the afternoon and evening yesterday. That was good because you never sleep good in a hospital. So for now it is lay low and let her body adjust to the meds.
That is about it for an update on this. Glad she is home and resting here. We will get through Phase 3 and see what the Good Lord has in store for her as we go forward. We are praying for a full recovery.
Again, I will post if anything new and or exciting comes up. Thanks again to everyone for following the Journey.
Petey
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