Saturday, 1/10/04
This past week went fairly well. The home care nurse was able to deliver the G-CSF shot quickly and Les was grateful that there was only one this round instead of 10 days in a row. He was able to select a toy from the “Brave Box” in the playroom as a reward for getting his shot. He chose a miniature Mr. Potato Head that can be a policeman or a fireman. (Les wanted me to share that part).
Les’ counts dropped fast and hard this round (meaning his energy level was low right off the bat instead of a delay of a few days). We went in for our clinic visit on Tuesday (1/6/04) and his hemoglobin was low enough to require a transfusion. The hemoglobin transfusions take 3-4 hours with an additional 1-2 hours just waiting for the blood to show up. Inevitably they conclude just about the time rush hour traffic starts, so we are grateful for grandma’s house. We zip over there and have a relaxing dinner then drive home after the traffic has calmed down. We did this scenario twice this week because Les now has to get his blood tested twice a week - Tuesdays and Fridays. Yesterday’s visit (1/9/04) required Les to get a platelet and hemoglobin transfusion. The platelet transfusion takes about an hour. We saw the doctor yesterday and she said that they would decrease the dose of cytoxin by ½ for the remaining rounds. Hopefully this will decrease his need for so many transfusions. Also, she prescribed Aranesp, another shot similar to the G-CSF, but this one is to help the hemoglobin recover faster. Hopefully between the shots and decreased chemo dose we can go to a clinic visit and come home mid afternoon instead of staying all day.
The doctor also looked at Les’ mouth. This week his gums became very swollen and they think it may be the beginning of mouth sores. The doctor prescribed a mouthwash, but I don’t know if we’ll be able to get Les to use it. He hasn’t really had much in his mouth for months, not to mention trying to get him to not swallow it and spit it out. Please pray that his mouth will just heal back up and not get worse.
On Tuesday’s clinic visit, a visitor came to the Infusion Center (one of the rooms we are in for his transfusions). His name was Shane Walton and he was a 2003 5th round draft pick for the St. Louis Rams. His hometown is San Diego and he was home for surgery then recovering for the rest of the season. He was really nice and sat down and played a Blue’s Clues computer game with Les. We’ve had visits from other people too like Padres players (and mascot), and college basketball players. You never know what’s going to happen during a visit to Children’s.
We did have some nice visits with friends and family this week. Les went to a friend’s house for a couple hours on Wednesday and I was able to meet Jason for a quick lunch and get a couple errands done. That was nice since I didn’t want to expose Les to many public places because of his low immunity level right now. Gammie visited Thursday morning and Aunt Joanna, Cousin Jazmine and Grandpa Martin visited Thursday afternoon, which helped to break up our day at home.
Overall, we are all doing fine – just a bit tired. Jason and I still trade off getting up with Les throughout the night to help him go potty. But other than that we are all in good spirits and counting down the remaining treatment rounds. Thanks for your continued prayers. We appreciate them greatly.
This past week went fairly well. The home care nurse was able to deliver the G-CSF shot quickly and Les was grateful that there was only one this round instead of 10 days in a row. He was able to select a toy from the “Brave Box” in the playroom as a reward for getting his shot. He chose a miniature Mr. Potato Head that can be a policeman or a fireman. (Les wanted me to share that part).
Les’ counts dropped fast and hard this round (meaning his energy level was low right off the bat instead of a delay of a few days). We went in for our clinic visit on Tuesday (1/6/04) and his hemoglobin was low enough to require a transfusion. The hemoglobin transfusions take 3-4 hours with an additional 1-2 hours just waiting for the blood to show up. Inevitably they conclude just about the time rush hour traffic starts, so we are grateful for grandma’s house. We zip over there and have a relaxing dinner then drive home after the traffic has calmed down. We did this scenario twice this week because Les now has to get his blood tested twice a week - Tuesdays and Fridays. Yesterday’s visit (1/9/04) required Les to get a platelet and hemoglobin transfusion. The platelet transfusion takes about an hour. We saw the doctor yesterday and she said that they would decrease the dose of cytoxin by ½ for the remaining rounds. Hopefully this will decrease his need for so many transfusions. Also, she prescribed Aranesp, another shot similar to the G-CSF, but this one is to help the hemoglobin recover faster. Hopefully between the shots and decreased chemo dose we can go to a clinic visit and come home mid afternoon instead of staying all day.
The doctor also looked at Les’ mouth. This week his gums became very swollen and they think it may be the beginning of mouth sores. The doctor prescribed a mouthwash, but I don’t know if we’ll be able to get Les to use it. He hasn’t really had much in his mouth for months, not to mention trying to get him to not swallow it and spit it out. Please pray that his mouth will just heal back up and not get worse.
On Tuesday’s clinic visit, a visitor came to the Infusion Center (one of the rooms we are in for his transfusions). His name was Shane Walton and he was a 2003 5th round draft pick for the St. Louis Rams. His hometown is San Diego and he was home for surgery then recovering for the rest of the season. He was really nice and sat down and played a Blue’s Clues computer game with Les. We’ve had visits from other people too like Padres players (and mascot), and college basketball players. You never know what’s going to happen during a visit to Children’s.
We did have some nice visits with friends and family this week. Les went to a friend’s house for a couple hours on Wednesday and I was able to meet Jason for a quick lunch and get a couple errands done. That was nice since I didn’t want to expose Les to many public places because of his low immunity level right now. Gammie visited Thursday morning and Aunt Joanna, Cousin Jazmine and Grandpa Martin visited Thursday afternoon, which helped to break up our day at home.
Overall, we are all doing fine – just a bit tired. Jason and I still trade off getting up with Les throughout the night to help him go potty. But other than that we are all in good spirits and counting down the remaining treatment rounds. Thanks for your continued prayers. We appreciate them greatly.