Day 8

Day 8 - 1st update by Grandma Sally - William slept very well last night after being in pain late evening. The staff changed his IV and monitor set-up and William can now control his pain by pressing a handy little button that controls the pain medication. From 11 to 4pm I woke up three times just to notice that he was still asleep and the wonderful nurse has moved his lying position from one side to the other by inserting a pillow between his side/back and the mattress. William is terribly swollen in his tummy and scrotum and lying on his back with legs bent seems to be the most comfortable position. When asking him this morning whether he had a good night's rest he responded "No, Grandma. You kept me awake with your snoring" HHmpf! I apologised and reminded him that his mom will stay with him tonight so he can at least get some rest. Just a reminder again that Will's 1st round of chemo is over. He now gets IV feeding. He also got his first shot that will support building up new white blood cells. We know to expect pain in his bones from this shot around the 3rd day. I am still waiting for the x-ray Dept to send me the CD - I have breathed in the neck of a few people this morning to make sure we get it asap. Loiss took a break last night and spent time with some of her girlfriends and theirbetter-halfs. Thank you Girls - your love, support, food and attempt at making koeksisters are highly appreciated. She came back last night a lot more relaxed. Grandpa Jacques is arriving today and we will assign to him the responsibility of regular exercise for William - even if it is just throwing a ball and playing catch. Will got up yesterday when Hazel (the other therapy dog) was here - but he was crying and we sat him back on the bed after just 2 minutes. After that his body functioned a lot more effective and vital signs improved quite a bit. We know the exercise is good for the body and spirit we will just do it different so he is not in pain. We will update you again after DR has done his rounds. Day 8 - Part 2 by Loiss. William has blood in his urine today. The Dr. explained that it was due to the Chemo. I am extremely pissed off because they were supposed to be giving him a steady dose of Mezna (drug responsible for protecting his bladder from chemo) but apparently only decided to give it to him for two days..They are putting him back on the drug today but I was told that the bladder could be expected to bleed for weeks. My mom finally received the CD-Rom of information from our Dr. this morning and she is currently at the FedEx office trying to send the package to the Dr. in NY. I received a e-mail this morning from a mom who's daughter HAD the same cancer. Her daugher is now NED (no evidedence of disease) Its such a huge comfort knowing that I am not alone and that there is a community out there on yahoo for the parents and patients of DSRCT. She also refered me to the Dr. that treated her daughter and had a huge success rate with a protocal called VACIME. Our PICU Dr. just stopped by and told me that they are starting William on a dieretic today. Hopefully this will assist him with getting rid of all the fluid build up in his tummy and scrotum. They are also giving him some more Albumin(a certain protein cell that his body is lacking and desperately needs) http://en.wikipedia.org/wiki/Albumin Day 8 Part 3. Today was one of the best day's yet! This morning William sat straight up in his bed and said " I want to get up" At that moment his physical therapist walked in and within a few minutes William scooted himself off the bed, stood up gave me a hug and then sat on my lap for about 5 minutes. Hallelujah! My heart is filled with new found hope! William's spunk and feisty attitude is back and in full force. He had several arguments with grandma today and on a couple of occasions even put her back in her place ;) Grandma needs to remember that William is a big boy and he is fully capable on doing certain things by himself :) Pastor Tim and Ginger from our church family GVCC were here this afternoon and spent some time folding paper airplanes. Pastor Tim prayed with my mom and William. Thank you to our entire GVCC family for your continued support and prayers! God is listening and the proof is in the daily miracles that we see in William. Grandma and William spent some time playing card games this afternoon. Snap has become a family favorite and William's determination to beat grandma at every game was apparent ;) The best news of the day is that I managed to find something that my child could eat (or chew) for the first time in 4 days. Bubblicious gum! His jaws are hurting so naturally he was not able to get too many chews in but, his willingness to place anything in his mouth is a positive move towards NED. I am still on the hunt for nutritional items that he is actually willing to eat....but in the meantime I am grateful for the small steps we are taking. William also took several large sips of water today (First time in 4 days) I am so proud of my son! I cannot express the gratitude in my heart for all the love and support that we are receiving. Please continue the prayers.