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NotAFarm said:
Thank you all for the uplifting quotes and thoughts. It always gets my day started in the right way!
This came late last night. Today will be Chemo #10 (of 21) for Kyle. Thank you for all your support for him!


Hello everyone.
I know when I wrote last week, I mentioned Kyle's new medicine he has to take. I wanted to write a quick update before he goes again on Monday. We were told the new medicine (gabapentin) would take 4-5 days before it really started doing anything. After anxiety and prayers, we did decide to give him the medicine but we did not start it until Tuesday night. He takes the medicine twice a day, every day. So in theory, we should not have noticed any changes until Saturday morning at the earliest. We have not noticed, or been told by Kyle, any negative changes. There are two things we have noticed... he has been more happy for longer periods than he has been in months. He has had a few extreme angry/upset, but that could also just be him being three and Katie picking on him. The other thing that has changed... his appetite has significantly increased. Today (Sunday) especially he wants to eat and ate entire meals with no prompting (not normal). At lunch, he ate three pieces of pizza, lettuce, cheese, a couple cubes of ham, and 1.5 brownies. That is a lot of food for him.
We don't know if the medicine has started to work and he feels that much better, or if it is coincidence that he is just feeling better. We don't know if he was in pain every day and it finally is subsided, so he finally feels good. We don't know if he is in a growth spurt (although we were told to not expect any growth while he is getting chemo). We don't know if he just loved seeing friends at church today and that put him in a good mood. We don't know what the change is, but there is a change today.
Although we do see light at the end of the tunnel, we are trying to stay focused on one day at a time. Kyle is doing awesome, so we just keep praying he stays strong.
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That is a TON of food!! i can hardly eat 2 pieces of pizza lol, so awesome!! KEEP GOING KYLE!!! woooohoooo!!!

Blooie said:
Amazing update! I look for them and keep the prayers heading your way!

Neurontin (gabapentin) is a wonderful medicine in so many ways. I took it for years due to my epilepsy and it was the only seizure medication I was ever on that totally stopped the seizures and that didn't have a lot of side effects....not so many that I ever wanted to just stop taking it. Oh, there are side effects - there always are with any medication - but not everyone gets them and not everyone has the same ones or to the same degree. I could get a little, um, moody at times when I was on it. The only reason that I was changed to something else was because after so many years and finally some attempts at dosage variations, it just stopped working as well for me. I had some break-through seizures and they were happening more often, so we had to come to the conclusion that my body had built up a tolerance to it and it was no longer effective for me.

Kyle likely won't have to be on it for nearly as long as I was, so right now if it's working for him, that's exciting!!! By the time he would have built up that tolerance, his cancer will be far behind him anyway, right?
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NotAFarm said:
August 15, Chemo #10 update!!


Hello everyone!
We had a pleasant surprise today at Kyle's chemo appointment. Everything went as planned as far as getting the infusion and his ANC was good (~1800). When we were talking about the next visit, the nurse mentioned that Kyle would not need to get chemo next week. This confused me because last week, the nurse had me schedule the next three weeks for appointments. But after the nurse and nurse coordinator looked again at Kyle's plan, they confirmed that he was never scheduled to get chemo next week. We anticipated skipped weeks in the future, but we did not know it was going to happen this soon. That combined with his increased appetite, happy mood, and a 37.4 pounds on the scale (very minor increase), we are in very good spirits today! It is such a drastic change from last week. Last week we felt like this was an uphill battle with no end in sight. This week, we felt relief and hope. The roller coaster continues, but this is one of our best days. We continue to pray that this additional medicine does not cause any significant side effects as it builds in his system. We also pray that the chemo Kyle is getting will not cause any further side effects. Kyle will get his blood drawn next week, but we can just take him to the regular doctor's office to do that. He won't need to go to the hospital.
We are still scheduled for physical therapy on Wednesday. I'm not really sure what to expect with that, because we haven't noticed much in the past couple days. We will go to make sure we are not missing something.
Overall Kyle is doing well day to day. A couple random things I thought I'd share. First, Kevin was on the couch and mentioned something about needing a check up (really he was just wanting to sit for a few minutes and directed the kids in something to do). Well, Kyle ran and got the toy doctor kit. He did a full check up on Kevin including chemo. He finished and said, "Okay dad, done with chemo. Let me get your papers for you." He found some papers to give to Kevin, and then wrapped a toy in his blanket and gave it to Kevin. I didn't know whether to laugh or cry. It is essentially what happens at his "doctor" appointments on Mondays. He gets chemo, we have papers to sign and go over with the nurse, and then he gets a toy from the "toy chest" at the clinic. It made me tear up a bit to think about how that is his new reality. I know it will change over time, but for right now, chemo is normal. It is unfortunate that he has to know that normal, but at the same time, he was gentle and confident when being the doctor, which indicates to us that he is not scared of going and it is no big deal in his mind.
Another random thing... After dinner tonight, we needed to get going to Katie's school open house. We were kind of rushing around a little, and Kyle was kind of being slow. I told him it was time to go get shoes on, and he said, "Ummm when I get to take the bandage off?" (the bandaid over his port that he gets every time he gets chemo) I was momentarily confused and said, "Oh, uh, maybe after this thing at Katie's school." He said, "Ummmm I think I take it off now." He lifted his shirt and pulled the bandaid off. Then he went running off to put his shoes on. When he saw Kevin, he yelled "Daddy, I take my bandage off. I be so brave." As we were getting in the car, he said "There, it's better to ride in car without the bandage." This kid. He has come so far from when he would barely let us lift his shirt to look at his scar on his belly. Then he wouldn't let us take any bandaid off without him throwing a fit and coaxing him to do it. Now, he does it all by himself, on his own time. Not only that, but he knew he didn't want it on in the car, so he purposely did it without us even asking him to. Another change we are so grateful for.
We know our victories do not always make sense to others, but for hearts that worry, we are so proud. This is week 10 in the 21 week plan. The light at the end of the tunnel is growing.


Thank you Team BYC for your thoughts and prayers!!
34
God is able!
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Amazing, he is such an amazing, wonderful, strong little boy
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i always look forward to your updates
 
NotAFarm said:
August 15, Chemo #10 update!!


Hello everyone!
We had a pleasant surprise today at Kyle's chemo appointment. Everything went as planned as far as getting the infusion and his ANC was good (~1800). When we were talking about the next visit, the nurse mentioned that Kyle would not need to get chemo next week. This confused me because last week, the nurse had me schedule the next three weeks for appointments. But after the nurse and nurse coordinator looked again at Kyle's plan, they confirmed that he was never scheduled to get chemo next week. We anticipated skipped weeks in the future, but we did not know it was going to happen this soon. That combined with his increased appetite, happy mood, and a 37.4 pounds on the scale (very minor increase), we are in very good spirits today! It is such a drastic change from last week. Last week we felt like this was an uphill battle with no end in sight. This week, we felt relief and hope. The roller coaster continues, but this is one of our best days. We continue to pray that this additional medicine does not cause any significant side effects as it builds in his system. We also pray that the chemo Kyle is getting will not cause any further side effects. Kyle will get his blood drawn next week, but we can just take him to the regular doctor's office to do that. He won't need to go to the hospital.
We are still scheduled for physical therapy on Wednesday. I'm not really sure what to expect with that, because we haven't noticed much in the past couple days. We will go to make sure we are not missing something.
Overall Kyle is doing well day to day. A couple random things I thought I'd share. First, Kevin was on the couch and mentioned something about needing a check up (really he was just wanting to sit for a few minutes and directed the kids in something to do). Well, Kyle ran and got the toy doctor kit. He did a full check up on Kevin including chemo. He finished and said, "Okay dad, done with chemo. Let me get your papers for you." He found some papers to give to Kevin, and then wrapped a toy in his blanket and gave it to Kevin. I didn't know whether to laugh or cry. It is essentially what happens at his "doctor" appointments on Mondays. He gets chemo, we have papers to sign and go over with the nurse, and then he gets a toy from the "toy chest" at the clinic. It made me tear up a bit to think about how that is his new reality. I know it will change over time, but for right now, chemo is normal. It is unfortunate that he has to know that normal, but at the same time, he was gentle and confident when being the doctor, which indicates to us that he is not scared of going and it is no big deal in his mind.
Another random thing... After dinner tonight, we needed to get going to Katie's school open house. We were kind of rushing around a little, and Kyle was kind of being slow. I told him it was time to go get shoes on, and he said, "Ummm when I get to take the bandage off?" (the bandaid over his port that he gets every time he gets chemo) I was momentarily confused and said, "Oh, uh, maybe after this thing at Katie's school." He said, "Ummmm I think I take it off now." He lifted his shirt and pulled the bandaid off. Then he went running off to put his shoes on. When he saw Kevin, he yelled "Daddy, I take my bandage off. I be so brave." As we were getting in the car, he said "There, it's better to ride in car without the bandage." This kid. He has come so far from when he would barely let us lift his shirt to look at his scar on his belly. Then he wouldn't let us take any bandaid off without him throwing a fit and coaxing him to do it. Now, he does it all by himself, on his own time. Not only that, but he knew he didn't want it on in the car, so he purposely did it without us even asking him to. Another change we are so grateful for.
We know our victories do not always make sense to others, but for hearts that worry, we are so proud. This is week 10 in the 21 week plan. The light at the end of the tunnel is growing.


Thank you Team BYC for your thoughts and prayers!!
34
God is able!
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Wonderful stuff!
 
@NotAFarm we have grown vey fond of the brave little man over the last few weeks and it's so wonderful to hear these positive updates
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Talking about kids, this is mine! At least twice a week I hear "Mom, what you do with my shoes??" and dinner time he'd spot a piece of onion or carrot from a mile away lol

 
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