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Well, I finally got caught up after a week off-line. My mother passed away on the 1st, so last week was a tough one. She had been sick for many years and is no longer in pain or suffering. She has moved on to a better place.
 
BuckAlorp said:
Well, I finally got caught up after a week off-line. My mother passed away on the 1st, so last week was a tough one. She had been sick for many years and is no longer in pain or suffering. She has moved on to a better place.
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Ken, I'm so sorry to hear of your loss. Prayers and sympathy to you and yours.

Welcome back.
 
@BuckAlorp
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ChickenLover200 said:
So I missed like ten pages of stuff... I'm not even gonna try to go back through those! Lol.

I ordered my first order from the BYc store! :celebrate can't wait for it to arrive!
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Woohoo!!!

BuckAlorp said:
Well, I finally got caught up after a week off-line. My mother passed away on the 1st, so last week was a tough one. She had been sick for many years and is no longer in pain or suffering. She has moved on to a better place.
Click to expand...
:hugs so sorry :hugs
 
The latest update, from last night, on Kyle. Thank you for keeping him in your thoughts and prayers. It is a great comfort to know so many people, from so many places, are lifting him up. Mary


Hello everyone,
To start with some good news, we all seem to be healing from the random summer cold, including Kyle. We thought his cough and congestion would get worse and linger, but he only coughs a little first thing in the morning. We are so thankful for that. Another positive thing was that Kyle's white blood cell count was up today. That was a shock to me because I would think that he is is trying to beat this cold, his numbers would be low, but they were not only acceptable, they were good. Great news for his immune system.
We did see the doctor today and Kyle received the two drugs today. This keeps him on his 21-week schedule.
Now the not-as-good. I have mentioned that Kyle has what we think is tingling or some kind of nerve pain in his legs. It does seem to be happening more often. We try not to make a big deal about it but even yesterday morning, he mentioned to Kevin that his legs were "tired" while he was playing Legos, so it's not when he is up moving around a bunch. He has said this randomly, but if we follow it up with questions about it, he acts like he didn't say anything and goes back to playing. Last night at bedtime, he was looking at his hands funny and kind of gingerly touching his hands. I asked if his hands hurt, and he got kind of embarrassed and put his hands down. I told him it was okay to tell me. After a few minutes I asked if his hands were tired like his legs get tired. He did admit that his hands felt tired too. We brought this up to the doctor today because although it is a common side effect, it needs to be addressed. The doctor did say that as this starts to happen, it will not necessarily get better while he is still getting chemo. I asked if we should be forcing him to take breaks and rest, but the answer was no. It is not like a hurt muscle that needs to be rested to heal. It is nerve pain, so it actually needs to be worked, but that we should allow him to self regulate. The doctor did a simple test where she had him push on her hands with his feet, then toes, then hands, then fingers. She said she could tell there was weakness in how he was pushing with his fingers and toes, which supports the nerve pain/problem. They like to address this as early as possible, so it does not get really bad before they try to tackle it. The doctor is requesting one session of physical therapy in order to help us learn some exercises to help at home. If it progresses, the doctor will order additional physical therapy. Along with the physical therapy, they are recommending a new drug for Kyle to take at home. It is called Neurontin. He is starting with a low dose to be taken twice a day. It is the type of drug that takes a few days to start working and needs to be a steady dose all the time to work correctly. Once he starts taking this, it essentially means he will be on it until he is done with chemo. We have a few concerns about the drug because of the list of side effects it can cause (https://www.drugs.com/sfx/neurontin-side-effects.html). However, we have to continue to remind ourselves that the doctors feel the side effects from this are worth the risks in order to combat this nerve pain. That has been a little hard to deal with today for us. We don't want him to have this nerve pain, but we also are concerned for our happy go lucky little man to be taking something that could alter his mood and make him feel worse in other ways. This is especially concerning when he doesn't like to tell us how he is feeling. It is also hard to think we will be giving him medicine twice a day for months in addition to the anti-infection medicine he already takes on the weekend. We will take one day at a time with it all, but we appreciate your continued prayers. He is one tough kid and we gain strength every day by seeing his great attitude.
We will keep everyone posted on how things go.
 
NotAFarm said:
The latest update, from last night, on Kyle. Thank you for keeping him in your thoughts and prayers. It is a great comfort to know so many people, from so many places, are lifting him up. Mary


Hello everyone,
To start with some good news, we all seem to be healing from the random summer cold, including Kyle. We thought his cough and congestion would get worse and linger, but he only coughs a little first thing in the morning. We are so thankful for that. Another positive thing was that Kyle's white blood cell count was up today. That was a shock to me because I would think that he is is trying to beat this cold, his numbers would be low, but they were not only acceptable, they were good. Great news for his immune system.
We did see the doctor today and Kyle received the two drugs today. This keeps him on his 21-week schedule.
Now the not-as-good. I have mentioned that Kyle has what we think is tingling or some kind of nerve pain in his legs. It does seem to be happening more often. We try not to make a big deal about it but even yesterday morning, he mentioned to Kevin that his legs were "tired" while he was playing Legos, so it's not when he is up moving around a bunch. He has said this randomly, but if we follow it up with questions about it, he acts like he didn't say anything and goes back to playing. Last night at bedtime, he was looking at his hands funny and kind of gingerly touching his hands. I asked if his hands hurt, and he got kind of embarrassed and put his hands down. I told him it was okay to tell me. After a few minutes I asked if his hands were tired like his legs get tired. He did admit that his hands felt tired too. We brought this up to the doctor today because although it is a common side effect, it needs to be addressed. The doctor did say that as this starts to happen, it will not necessarily get better while he is still getting chemo. I asked if we should be forcing him to take breaks and rest, but the answer was no. It is not like a hurt muscle that needs to be rested to heal. It is nerve pain, so it actually needs to be worked, but that we should allow him to self regulate. The doctor did a simple test where she had him push on her hands with his feet, then toes, then hands, then fingers. She said she could tell there was weakness in how he was pushing with his fingers and toes, which supports the nerve pain/problem. They like to address this as early as possible, so it does not get really bad before they try to tackle it. The doctor is requesting one session of physical therapy in order to help us learn some exercises to help at home. If it progresses, the doctor will order additional physical therapy. Along with the physical therapy, they are recommending a new drug for Kyle to take at home. It is called Neurontin. He is starting with a low dose to be taken twice a day. It is the type of drug that takes a few days to start working and needs to be a steady dose all the time to work correctly. Once he starts taking this, it essentially means he will be on it until he is done with chemo. We have a few concerns about the drug because of the list of side effects it can cause (https://www.drugs.com/sfx/neurontin-side-effects.html). However, we have to continue to remind ourselves that the doctors feel the side effects from this are worth the risks in order to combat this nerve pain. That has been a little hard to deal with today for us. We don't want him to have this nerve pain, but we also are concerned for our happy go lucky little man to be taking something that could alter his mood and make him feel worse in other ways. This is especially concerning when he doesn't like to tell us how he is feeling. It is also hard to think we will be giving him medicine twice a day for months in addition to the anti-infection medicine he already takes on the weekend. We will take one day at a time with it all, but we appreciate your continued prayers. He is one tough kid and we gain strength every day by seeing his great attitude.
We will keep everyone posted on how things go.
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He is such a strong little boy, so happy that his counts are up and his cold is going away. My husband's cousin had/has colon cancer and he had the nerve pain in his hands, he is a painter so he needs his hands, he has said that the more he does the better they feel. So Kyle is doing well with this
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for all involved and prayers for everyone too
 

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