Saturday, May 12th

Hi everyone. Well Alex has not had the best of days since the last post. The sleep is still not restful and that causes a strain on everyone. Right now everyone else is sleeping and I plan to join them shortly. I just wanted to get a few thoughts down before they were replaced.

On Thursday, you may recall, that we did not have to have an chest X-ray because the docs said his lungs sounded clear. Well that night, at the dinner table, Alex said, "Mom, tomorrow I want to have an X-ray." I said, "Okay, why?" His reply was (are you ready?) "Because I want to make sure there is no sick in my body." Steve and I were completely astounded and told Alex how amazing he is. So Friday morning, after another horrible night of coughing and choking, Alex and Steve headed to the hospital. I met them there. The doctor and nurses concluded that since his lungs are clear that he is having difficulty with increased "secretions". They gave us a script for stuff to help dry up the secretions and upped his steroid dose a half milligram per day. What is happening is that these secretions are actually choking him because his swallow reflex has been compromised. AUGHHHHH!!!! Poor kid, he just feels crummy!!

So yesterday afternoon, while coloring, Alex says "Mom, I have something to tell you." I ask "what is it?" He says "My drool is back, but there is a problem." I ask what is the problem. He replies "I'm drooling in the MORNING and at night." (Can you believe this kid? Nothing gets by him and he is so bright and aware of everything.) I tell Alex that we know his drool is back (weird thing is that it is on the left side now as well, which is new) and that the new meds will help him and hopefully he will get a good nights rest and feel much better very soon. Once again, I am just completely in awe of my child(ren).

What this all means is that the radiaiton/chemo is working (causing swelling of the dying tissue) or that it is not working. We just won't know until the next MRI which is four weeks after his last treatment. It is so hard to remember this and not be scared by the return of symptoms. I am having to force myself to stay positive and just take it one day at a time. That is all we can do. That's it, nothing else, just that!!!! I feel like screaming right now. I guess that is the control freak in me coming out!

Okay, to get up to today, Alex did have a bit more rest last night but at 4 am, he started the choking and coughing again. I gave him some more meds but I'm not sure if they helped much. Zoe woke up at 4:30 am, and wanted to watch her shows. I put her in bed with us, then Roxie woke up and was very happy which was obvious since her large tail was making lots of racket!! (How do you spell racket, the non-tennis kind, anyway?) So when Steve came and woke me up at 9am, I found Alex and him on the couch watching shows. Alex looked horrible and seemed to feel worse. Steve asked that I take his temp and it was at 99.8 degrees. So we called the on call doc and she said to give him Tylenol. Right now my concern is that he is not eating or drinking. I can't even get water into him.

We had planned to meet friends at a local amusement park (small with lots of kiddee rides) this evening. They have kids that Alex adores but we had to cancel those plans. Right now all I want for Mother's Day is to see Alex smile, color, eat and drink. It's so basic but so precious.

God bless and Happy Mother's Day to all you moms!!

G