We enjoyed the routine of last week. Davis did fight us some on taking his medication. I thought we were beyond that, but I guess I was wrong. Sometimes I think he is too smart and logical for his own good. He has an amazing understanding of the needs for each of his medications. If he hasn't had the chemotherapy medication, Vincristine, in awhile, he doesn't think that he needs to take the side-effects medication, Neurontin. And while that makes sense, there are side-effects of the side-effects medication if he doesn't continue with the proper dosage at the proper times. And since he hasn't felt any of the side-effects of the side-effects medication, he doesn't think he is going to have any. Coining it as frustrating is significantly understating it.
Kyle took Davis to his chemo appointment on Friday. This past week's chemo was an easy one. No chemo is really easy, but this week's chemo took less than an hour to receive. Davis' counts were drawn in the clinic, and I received those later in the day on Friday. We had been warned that his counts would eventually drop, so it was no surprise when we got the read on Friday. Davis' white cells had dropped to 1.3 (5 to 10 is normal). His hemoglobin was still pretty good at 9.4 (transfused around 7, unless he is sick, and then transfused around 8). His platelets remained pretty strong. The biggest hit was to his ANC (immune system). It went from over 4000 last week to 494, which means he is neutropenic. Neutropenic is an immune system under 500 (above 1500 is healthy); being neutropenic puts Davis at a critical risk for infection/illness. That doesn't necessarily mean that he is going to get sick; it means that if he catches a viral or bacterial infection somewhere (cold and flu season), his body doesn't have the ability to fight it off. He would be hospitalized and the doctors use medication combos to ease some of the burden from his body. We are constantly trying to find the balance of allowing him the freedom of living a normal ten-year-old life and fighting the urge to wrap him in a bubble suit and keeping him in quarantine for as long as it takes.
The weekend came as a nice surprise. But let me back up a little. When Davis was approached about making a wish through the Make-A-Wish Foundation, his very first wish idea was to stay at a cabin we had stayed in a couple summers ago in Utica, Illinois. He thought that was one of the best vacations he had been on, and he wanted to do it again. Two and a half years ago, the entire Coffey family (Kyle's parents, Kyle's sister and her family, Kyle's brother and his family, and us) rented a cabin in Utica. There was plenty to do at the resort, and when we tired of that, we could head down the road and hike in the Starved Rock State Park. We had a good time, and apparently, it made quite an impact of Davis. When making his Make-A-Wish wish, I told him to dream a little bigger, because we could go to Utica anytime. When my mother-in-law heard about what he originally wanted to do, she called to book a three-day weekend to fulfill Davis' wish. The receptionist asked her if the booking was a special occasion, a birthday, an anniversary. My mother-in-law, Marylee, explained Davis' wish and booked the room. To my understanding, the resort managers and/or owners called her back and offered the cabin to us as a gift. It weekend was booked months ago, and a great deal of prayer went into making sure Davis - and everyone - was well enough to go.
We had an amazing time. With the cold temps outside and snow all over the ground, it was easy to buy into the "snowed in" excuse. The kids (and us adults, really) played a lot of Wii. We managed to pass the time playing board games and reading (I read two novels in three days! New record since college.). We ate in every meal, and then we ate some more. We were on constant graze. The kids put on a small play, which Davis and his cousin Cora wrote. We took the kids up to the indoor water park and amusement park for a bit each day. Davis couldn't go, but he didn't seem to mind too much. We somehow managed to feed and bathe and entertain fifteen people for nearly three days. Great time, great memories.
This afternoon, Davis spent a couple of hours with his buddies. I don't care how sick he feels or how tired he is, he always manages to rustle up the energy to hang out. He needs to hang out with his friends; it takes him immediately away from the cancer world.
Tonight brings routine. Homework, band practice, reading, supper, showers, and bed. Despite having to take the steroid this week (upsets his stomach), Davis has a week off. He will have to get a CBC and CMP on Thursday. This is to check to see if he needs any transfusions and to see where his ANC is. Other than that, there is no other work scheduled. Next Friday, Davis will have a big day of chemo. He will receive another spinal tap, more IV chemo, and he will start the Ara-C again. This is an IV chemo given over thirty minutes four days in a a row. His port will stay accessed all of those days. We aren't sure yet if the doctors will require or want us to stay in St. Louis (might depend on his ANC) or if we will be allowed to administer the chemo at home and then have a Lincoln Land Peds Nurse de-access him on Monday, which we have done before. Davis tolerated the Ara-C well when he received it in September, so I am hoping and praying that he will do the same this time. From what I have been told, Ara-C is very hard on children and many are hospitalized from it. We have been blessed that this has not been the case for us.
We continue to thank you for your positive thoughts and prayers. I know I have stated this so many times that it is nearly cliche, but we really couldn't do this without the support we have received. We continue to pray that Davis remains healthy despite the low ANC. We pray against short term and long term side effects. We pray that his organs aren't damaged by the chemo being pumped into his body. We pray that he is healed completely and forever - no relapses ever. We thank you for thinking of us and praying with us.
Lord willing, we are looking forward to another ordinary week.
We will keep you posted.
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| teeth cleaning time. davis will skip out on the dentist (unless a toothache occurs) until april. in order for davis to get his teeth cleaned, he has to take additional antibiotics and have a CBC to see where his ANC is. his ANC has to be high. there is high risk for infection otherwise. |
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| something about the first real snowfall that makes a boy smile. |
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| i love this picture. what a beautiful view. the park . . . and the boy. |
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| another gorgeous smile. he looks so healthy here. he's hanging out in the chemo lounge waiting on his chemo. |
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| Utica. this was the view from the back of our cabin. i'm not a fan of winter, but i can't deny how serene the view was. |
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| well, here we are sporting our team davis pride! |
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| i can't believe davis and annakate are holding hands unprompted in this picture. this never happens. |
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| a typical moment in the cabin. i think this is super mario bros. all four players. kyle is stretching out and getting ready to run. |
So glad to hear you had a great week-end. Nothing like getting away and spending time with your family! We continue to pray for Davis' healing and strength for the whole family.
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