Quotes and Thoughts for the Day

Pics
Date sort Score sort
NotAFarm said:
Update from today:

Hello everyone!
Well we have made it through another week :). We met with the doctor that we really like today. After chatting with the student, and then the doctor and getting it verified with the attendee, we came to the conclusion to wean Kyle off of the gabapentin (that nerve pain medicine). Although the chemo builds up over time so it could get worse, we do not feel that it is having enough of an effect to make it worth it. So the doctor offered to lower his dose to once a day until Sunday and then stop the medicine. She did warn us that if he starts to get the pain again, then we might have to start the medicine again, and it would take a while for it to start working. The thing is, it should just now be really working. Which means any progress he had after that first week of taking the new medicine may or may not have been the medicine. We will have to wait and see, but we are praying that Kyle stays strong and we will not need to start the medicine again. If he has one bad day every four weeks, and we have to give him a dose of oxycodone, that is a better to us than this drug every day, twice a day and not knowing what the long term effects of it will be. Kyle's moods have been pretty extreme, so we also need to see if the extreme is from the medication.
Kyle did have a moment of "Mama, I'm really scared!" when they were going to access him today. It has been two weeks since he was accessed, and we could tell he was out of the routine. In theory, and pending any sickness, he should not need to be accessed too many more times. It might mean those next couple of times it will be a little rough, but the process is actually pretty fast.
The great news is that he does not have to get chemo again until Sept 19th (3 weeks)!!! His dose was higher today and it will be on that day as well. He will also have an ultrasound and chest Xray on that day. We will go to the base and have blood drawn for the next two weeks, but that is just an arm prick.
Kyle continues to be some comic relief to the staff at the oncology clinic. Because he is one of the kids that feels pretty good when he is there, he usually is making funny noises or telling them about random things. Today he was telling the doctors about sea creatures (he has a couple books and he had stickers today). Then he was showing the nurses his robot stickers and how the robots were holding hands when he put them on his paper. He found four robots that looked similar and told Kevin and the nurse that those robots were his "family: dada, mama, Katie and Kyle." Then he smiled really big and proud. I think the nurse melted a little. We see so many sick kids in there, and I know that has to be hard on those nurses. They are so patient and kind and really try to make everyone have a good day. We are happy that Kyle can hopefully bring a smile to their faces.
Thank you again for your continued prayers and support. They have been so helpful to us. We send wishes for a wonderful week!
Click to expand...


He is such an amazing little boy, i love these updates. I feel like i have really gotten to know him. Hugs and prayers for you all
 
large.jpg
 

New posts New threads Active threads

Back
Top Bottom