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Thu. 5/29/03 - Home

Thursday 5/29/03
I’m so sorry for not updating the “Latest News” for over a week. We went home last Thursday after an early PT appointment, made a quick sack lunch and arrived at preschool just in time for “circle” and then outside for sprinkler and wading-pool fun. Les’ outdoor activities will be limited this summer due to his treatments, so I’m glad he got at least one hour of "fun in the sun" (and water). The rest of the holiday weekend was spent resting, fixing cars, and catching up on the latest goings on.

Long story, but please pray for our vehicles! We currently own three of them and for the past couple weeks we have had one or more out of commission for various reasons. Thank you to all of our friends who have offered the use of their “extra” cars during this time. It is greatly appreciated!! It looks like now we have two up and running, but the third may need some more attention. Pray that this is easily diagnosed and fixed in a timely manner.

Tuesday, the 27th, was Les’ radiation oncology simulation. This is where they “set him up” on the table the way he will be for his treatments and then take a bunch of x-rays, CT’s, MRI’s, measurements, etc. Then they download all the information and send it to the radiation physicists who crunch all the numbers and come up with the right angles to aim the radiation. Les had anesthesia during this appointment, so he didn’t know it lasted for a little over 3 hours. At the end of the appointment, they told us to come back today (Thursday, 5/29/03) to begin treatments. That didn’t give me much time to go back home and prepare for our next 6 weeks. I had figured it would take longer to do the calculations and the treatments would start on Monday – Nope. No such luck. There went my week of “time” to do “stuff”.

While at home, we sneaked in one more visit to preschool. Les even showed his friends the bandage on his chest. To me that was a good sign of him accepting his new experience. Les spent the rest of the day at Gammie’s so that I could finish packing and preparing to be gone. At least it was only for two nights this time. Next week will start the five night stays.

Today was Les’ first radiation treatment. It seemed to go well. He woke up from the anesthesia just fine. We got to Grandma’s with just enough time to change clothes, eat breakfast and then leave for a PT appt.

The PT was fun. Les rode a tricycle down the hallways, got to ride a cool little floor scooter thing, walked the balance beam, and was shown the “secret stairs” (the fire-escape stairwell). He even did 30 leg presses in the big kid’s gym.

When we got home from PT, Les experienced his first “side effect” from radiation. He had a headache. I called the nurse and got permission to give him Tylenol, but it took about 30 minutes for it to start working. During the wait Les just lay in bed trying to take a nap. He was finally able to take a 3-hour nap. When he woke up he was feeling much better. In fact, it’s 9:30pm when I write this and he’s still awake. I need to get him up at 6:25am tomorrow morning, so I hope he gets to sleep soon.

I also gave Les his first dose of chemotherapy today. It is in an oral suspension format (grape flavored), and I give it to him once a day for 21 days. Then we get a week rest before we start another 21 days, and then another rest before another 21 days, and so on. I’ll never look at a 10-day antibiotic schedule with disgust again! There were no noticeable side effects from the chemo as yet.

Les’ appetite seems to be normal. His eating hours are a little different since he can’t have breakfast till after his radiation appointments, but I’m flexible on that.

I’m not sure what else to say now. It’s been a very busy month. Thanks for all your prayers for Les and for me and Jason. We really do feel them and don’t know how we would get through this without them.

Tonight I asked Les what he would want to tell people on the website (tonight is the first time I actually explained to him that he has a website and that I write letters on it). He told me that he wanted everyone to know about his shakiness and his bandage. So I’ll tell you. Les is still slightly shaky in his right arm/hand and right leg. He also has a bandage on the left side of his chest over his port throughout the week while he’s undergoing the radiation treatments. This is because they “accessed” his port earlier in the week in order to give him his anesthesia and it can remain “accessed” until Friday. The bandages keep the area clean and also keep the IV “pigtail” from flopping around. Some of the tape is positioned in such a way that it pulls the skin a bit when he tries to lift his left arm, so that doesn’t please him much. We mentioned this to the nurse, and she is going to see if they can position it differently next week. Oh, and the best part in my view is that they will remove all the bandages while he is still sleeping and he won’t feel a thing!!! We’ll see how that works tomorrow.