8/15/2011:  10:20 PM

I know, I know.  I have been doing a rotten job at keeping the blog updated. It has been quite a whirlwind around here.

Let me catch you up. I can't remember when I last blogged . . . Friday, was it?  Well, Friday was spent in clinic. We were shoved in a little examination room from 8:30 AM to 5:05 PM. Thank goodness for the Ipad and Annakate. The Ipad provided the mind-numbing stimulation, and Annakate provided the entertainment.



good fun with friends



We headed to the hotel shortly after where we spent the next few days. Davis obviously spent a lot of time in the room. He didn't mind it too much. He has fallen into a routine of hanging out in his pajamas and watching TV. A few families from church were there for their annual planning committee weekend, so Annakate had a few friends to play with, which got her out of the room.

Once again, we are reminded in the power of prayer. The medication that Davis started on Friday is notorious for making children extremely nausea and sick with flu like symptoms. Many children are hospitalized because of dehydration. We were prepared for this. As a precautionary measure, we have been giving him anti-nausea medication around the clock, and he wears seabands (acupressure bands on his wrists) quite a bit. Although Davis does have bouts of nausea, he hasn't been sick once (so far). Thank you, God. All weekend, he continued to have energy and his counts appeared pretty strong going into the chemo.  We know that his counts (ANC, red blood cells, platelets) will continue to drop. The doctors told us that he may bottom out as early as next weekend (also called nadir). This means that he will probably not feel well (usually very weak and achy) and school will be held at home until his counts are in a safer range again.  Today, we started seeing a side effect of this chemo - zero appetite. Last month, we had to keep in from eating everything in the house (due to Prednisone), and now we have to force him to eat and drink.  But we aren't complaining; we know that we are so blessed that Davis his tolerating this chemo so well, and my heart breaks for the children who do not.

it's amazing how
well they get along



Today we met with the radiation oncologist at the Siteman Cancer Center. This is not part of Children's Hospital but is in the same Barnes Complex. To be honest with you, I had some severe stress over this radiation. To me, it felt that I had just come to grips with all of the changes and risk, short term/long term side effects, that accompany chemo; I wasn't ready to deal with one more thing.  Ok. Back to the appointment. After filling out a bit of paperwork, we were called back to an examination room.  A doctor, a fellow I presume, listened to the back story of how we ended up here, gave Davis a complete physical, and told us about the procedure.  Then, Davis's primary radiation oncologist, Dr. Mansur, came in and repeated bits and pieces of what we had completed with the fellow. Davis will receive the lowest grade radiation (12) to his brain for ten minutes a day for eight days in a row. We discussed the short term and long term side effects, and many of my major concerns were not issues because of the grade, length of duration, and length of time Davis will receive radiation. The most common side effect Davis might experience is sleepiness. The reason for the radiation is a preventative measure to keep the brain free of cancer. 

After the visit, Dr. Mansur's nurse, explained to and showed us how Davis will be fitted for a mask (hard plastic Spiderman looking thing) and  how the procedure will go down. They took us into the room where Davis will be getting his radiation, and they showed Davis how everything works. The mask will be placed over his face and bolted to the bed to keep Davis perfectly still (very scary in my opinion).  The radiation machine will circle his head for ten minutes (looks like a CT scanning machine), and then he will be free to go. Davis really thinks that he can do it without being sedated, and  Dr. Mansur is willing to give it a shot. I know for a fact that I couldn't do it with sedation. Actually, I would like them to sedate me when Davis does it. No can do though. :) I must say that St. Louis Children's and Siteman's do a fantastic job at catering information to Davis.  At every appointment, the conversation is geared to Davis and his questions and concerns. It seems the doctors are talking to him and not so much to us. I love it.



nurse kyle giving
davis his chemo



I nearly forgot to tell you the most exciting part. Kyle and I were taught how to administer Davis's weekend chemo. This will allow us to do some chemo at home. Since Davis tolerated it so well this weekend, we are able to administer it at home (most times). This will allow us to give him his Monday chemo and de-access his port all before he heads off to school.  This also means that we will be able to be home with Annakate.  Administering the chemo takes about 30 minutes total, and I was a whole lot more comfortable doing it than I thought I was going to be. Kyle is great at it; I think it fits his hands-on personality.

We will be heading back to Children's on Friday for more chemo. We will continue with the 4-day chemo he is on now, and he will have a LP (lumbar puncture) to put chemo in his spine. We refer to them as spinal taps. In the meanwhile, the kids will be starting school, something he is looking forward to; and we will be watching his counts.



my turn



We continue to appreciate your prayers for good health and strength and prayers for tolerance of the spinal tap (last one made him pretty sick). We pray against ALL side effects.  I have even started to pray for children in his class that they may practice good hygiene and be super healthy all year long.  Why not? We know what God can do.

I count my blessings every day and marvel at God's goodness.

We will keep in touch.