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Hello, Team BYC!! I've been gone, and then had some computer issues, so I'm just getting around to post this update on Kyle that came on Tuesday morning. Thank for your continuing thoughts and prayers for Kyle and his family. Your support means so much to all of us!
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Hello everyone!
So have you lost count of the weeks yet ;)? I would need to count how many weeks it has been since this all started, but a more important week number is that it is week 20... of Kyle's 21 week plan!!!! I'd say "wow this actually has gone by pretty fast" but to be honest, there has been nothing "fast" about the past 5 months. Every day has been long and tough, but we are on week 20! :) I know I haven't written, so I will try to recap the past couple weeks.
Kyle's chemo hit hard like we expected. Although he did good Monday and Tuesday morning, he ate about half his normal food. Starting Tuesday afternoon, he started vomiting... even just water and crackers. It was bad enough that we called the on call doctor Tuesday evening to verify the criteria for dehydration. It came down to: If he could urinate before 9pm, he could go to sleep. If he didn't, we had to take him in to the ER to get fluids. Thank God, he finally went to the bathroom around 8:45. Wednesday was full of a very slow recovery. He didn't want to eat, and because he had been laying around for over a day, he started having pain in his legs. We gave him a dose of oxy and that did seem to help long enough to get him moving a bit and give him some relief. He's such a tough kid. I'm not sure we will ever really know the amount of pain he has been in, because he hides it from us so we don't slow him down. He felt much better Thursday morning, and he requested to go to school. We let him go, but when I picked him up, I could tell he was really tired. After a good nap, he seemed to be doing much better. That was until he started coughing before bed. Turned out he suddenly had Katie's cold from the week before. He had a squeaky voice (which was fun for everyone) for two days. Unfortunately he still has the cough now (roughly 11 days), so we will be taking him to the pediatrician tomorrow to verify he doesn't have anything settling in his lungs. His energy is good, but he can't run around without coughing so it's hard to tell how much energy he actually has. No fevers, so that is a good sign.
We did have blood drawn last week but through lack of referrals and then lab ridiculousness, we didn't get any results from last week back until today. However, today, when I checked in to get Kyle's blood drawn again, I asked about the results and the tech said "yes we talked to that office already today" and she said it kind of snarky. I smirked to myself (the oncology office was REALLY angry on Friday when we didn't have results), but I didn't say anything. Magically, we received a call two hours after Kyle's blood draw with results (normally it's 24-48 hours and I have to call to initiate getting results). I'm not sure who talked to who, but Kyle's results were a high priority today. Normally I don't like to cause a fuss to people, but I'm okay with this. My mood was also unforgiving because the tech that tried to draw Kyle's blood today poked him but I guess missed the vein, so she dug around his arm looking for it. When the needle initially went in, Kyle looked and said "Where the blood?" In true Kyle fashion, he screamed initially when he saw the needle, then just sat quietly and watch as the needle poked around inside him arm. Finally, he kind of whimpered and said it hurt. So then the tech said she would try the other arm. Kyle had a hard time with that concept, and so did I. I knew we had to get the blood, but it was so hard today. This should be his last blood draw that he needs to get at the base. Any future blood draws, we will not be going to the base, even if we have to pay for it. I will not put him through that again. The good news is that his counts were all pretty high, at least compared to the past 2 months.
So this week we are praying for healing for Kyle's cold and looking forward for next week. As a reminder, on Monday, the 31st, Kyle will have another ultrasound, chest xray and blood draw (at the hospital). Then he will have a visit with the doctor, and THEN he gets to ring the bell and have a little celebration. It still feels surreal to us, but we are starting to wrap our minds around the concept of actually being done.
We hope everyone has a great week! :)
 

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