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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!!
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God is able!
 

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