Tuesday, April 3rd

Well I can't sleep so I thought blogging might help. First of all, I must say thanks to everyone for their support. Steve and I were able to go out Saturday night for the first time in a long time. Tina (does great posts) was able to take care of the kids for us on short notice. Thanks Tina! Also, some friends and neighbors got together and arranged for a housekeeper to come to the house next Tuesday. This is so very awesome, since I have been talking about getting someone out to help with the housework, but just can't stop thinking about how far that money would go if I would just do the work myself. Also, the photographer that had the photo contest that Zoe was a finalist in, has offered us a family session. Each and every one of these are evidence that truly great people are around us and that there is much to be grateful for at this time.

Speaking of gratitude, I think I will buy a "gratitude journal" just to keep the nasty "what if" monsters away. I have found my mind wandering in very dangerous, dark territories lately and I really need to pull myself up out of this. I have scheduled an appointment to go back to my counselor on Friday. Steve and I decided that it is worth the extra cost. I think I will just go in and start crying and not stop until the hour is up. That or screaming would really help right now. We'll see what comes out, but this is getting harder already.

I see Alex's facial paralysis getting worse every couple of days. His drool is substantial now; especially when he gets upset and causes himself to gag. I hate that. I want that to go away NOW! He obviously does not feel stable on his feet but we try at every opp to get him to walk a bit. He says he feels dizzy. I don't know whether I fight that battle or not. Today, he may have eaten three bites of food and did not finish one glass of "spider milk" (vanilla Carnation breakfast). I begged, bought cookies, chips, pot pie, but nothing worked not even his favorite dish, shell noodles with white cheddar sauce. Since he has surgery today, he won't be able to eat until this afternoon either. Maybe he will have an appetite then.

So the plan is that Steve will take Alex to the radiation treatments each morning and then go to work. I am grateful to Steve for offering this. I don't know how long one parent will be able to do it though. We'll just have to see.

Saturday, Alex and I went to a former classmate's birthday party. It was good to see some old, familiar faces but I started crying at the departure when the sympathetic hugs started. All of the kids had grown so. I know Alex misses his old friends. I have inquiries into the old school to see if they have room in the summer session for Alex and/or Zoe. Fingers crossed!

My stomach has been upset for two days now. Alex's pediatrician called this evening to get caught up and said that Alex needs to be put on an antacid to avoid ulcers. She wants me to talk to the docs about this. Seems that the stress and side effects of radiation can cause ulcers in kids. Whippee, something else to worry about. I also asked her about getting a second opinion. She said what several others have said. That Dr. Foreman is world renowned and if he and his colleagues don't know what is going on then no one will and that will not change the treatment. Dr. Foreman is also going to a pediatric oncology brain specialists forum in a couple of weeks. He and the other 14 specialists from around the world will meet and he said he is taking Alex's case to them as well. We know he has already asked several of them and none of them have ever seen a JPA do this either. So we are pretty comfortable with him and his level of expertise and access to the world's best of the best. Instead of second opinions and doubt now, we need PRAYERS! Lots and lots of prayers that the radiation will work and Alex will be better than ever when this is all over. I feel time is of the essence and we just need to "keep moving forward" (from "Meet the Robinsons"; too scary for 4 year olds in Alex and Esther's opinion).

Well, this has taken up 40 minutes so I best stop. Have a great day and please send positive energy and thoughts!

God bless.
G