On Monday, we went back to OMO to have Ambrosia's numbers checked. Dr. Cheerva saw us and we talked a little about still doing the irinotecan chemo that goes through her port. At the time Dr. Cheerva said she likes to give chemo at least 2 rounds before deciding it's not working. We planned to have numbers checked again on Thursday and possibly starting the irinotecan back up next Monday. Ambrosia's numbers on Monday were good.
After leaving OMO, I contacted the nurse from Kourageous Kids to tell them we were home for the rest of the day so they could see us. The nurse and the social worker came to the house to see us. It was only an initial meeting as they were still waiting on the medical records from the hospital for Ambrosia so we could be officially put on the program. They explained that we could call anytime and someone would come out to our house if we needed them. They said to ask for any help we might need, no matter how silly the request might seem. They also said they would come out and see us as many times as we needed them to, even if it was twice or more in one day. They can also come out fewer times. The only requirement is Ambrosia needs to be seen every 14 days at the least.
Tuesday, I got word that our wish from A Special Wish Foundation, Inc. had been granted. We will be picked up in a limo tomorrow morning bright and early and taken to the Louisville Zoo. There we will be meeting the Zoo director and be given a behind the scenes tour before the zoo opens. We will have the entire zoo to ourselves! They will have their staff photographer on hand to take pictures so that we don't have to. Afterwards, the limo will be taking us to Cracker Barrel for breakfast. I know we will have a great time and it will be a wonderful family memory.
Wednesday, the social worker from Kourageous Kids came back to see Braeden. She also brought her intern that is working with her for the summer. The intern played with Braeden and his toys while I talked to the social worker. She explained that we are eligible for 13 months of services after Ambrosia passes, but she said really they will be there for however long we need them to be. That was good to know. She told me about a fishing trip they will be having next Tuesday that she hoped Braeden could attend during the day. I know he would enjoy that especially since she said where they fish the kids sometimes catch upwards of 30 or more! We talked some about having a quilt made out of Ambrosia's clothes for me and also how Braeden recently became attached to a bear. I think we may make a Build a Bear and dress it in one of Ambrosia's outfits for him so that he will have a piece of his sister with him all the time. The social worker explained they have 500 volunteers in this county alone and if there was anything we needed they would find a way to get it done. I know having this kind of support will definitely be a blessing.
Today, we went back to OMO to check numbers again. Ambrosia's platelet count had decreased some but not enough to need a transfusion. Dr. Cheerva was there to see us again today and after pressing on Ambrosia's belly she is fairly certain the tumor on her liver has gotten bigger. I feel it has too, as Ambrosia's belly has looked a little more distended than usual. Dr. Cheerva then said she wasn't sure she was comfortable going forward with the irinotecan and asked if Wes and I had discussed it. We had and we are okay with only continuing the seraphanib that I have been giving her at home, which is an oral chemo. Dr. Cheerva said she doesn't want to unnecessarily put Ambrosia through chemo that will only lower her counts and put her at risk if it is not going to have any affect on her tumors. It would only mean more trips to OMO, blood transfusions, platelet transfusions, and a lot of hassle when we could be at home spending quality time together. We decided to revisit the subject on Tuesday next week when we go in for them to check her numbers.
After coming home from OMO, we had a package from A Special Wish Foundation, Inc. It had T-shirts for us to wear tomorrow on our special outing. It had a lot of toys for Ambrosia and Braeden along with a check for us to spend at the zoo on souvenirs. There was a letter explaining our entire day, along with letting us know that Cracker Barrel would be taking care of our meal as well. I am sure I will have a nice long entry to write about our day tomorrow and how special it was for us. Right now I should go to bed as the limo will be picking us up at 7:45 am!
After leaving OMO, I contacted the nurse from Kourageous Kids to tell them we were home for the rest of the day so they could see us. The nurse and the social worker came to the house to see us. It was only an initial meeting as they were still waiting on the medical records from the hospital for Ambrosia so we could be officially put on the program. They explained that we could call anytime and someone would come out to our house if we needed them. They said to ask for any help we might need, no matter how silly the request might seem. They also said they would come out and see us as many times as we needed them to, even if it was twice or more in one day. They can also come out fewer times. The only requirement is Ambrosia needs to be seen every 14 days at the least.
Tuesday, I got word that our wish from A Special Wish Foundation, Inc. had been granted. We will be picked up in a limo tomorrow morning bright and early and taken to the Louisville Zoo. There we will be meeting the Zoo director and be given a behind the scenes tour before the zoo opens. We will have the entire zoo to ourselves! They will have their staff photographer on hand to take pictures so that we don't have to. Afterwards, the limo will be taking us to Cracker Barrel for breakfast. I know we will have a great time and it will be a wonderful family memory.
Wednesday, the social worker from Kourageous Kids came back to see Braeden. She also brought her intern that is working with her for the summer. The intern played with Braeden and his toys while I talked to the social worker. She explained that we are eligible for 13 months of services after Ambrosia passes, but she said really they will be there for however long we need them to be. That was good to know. She told me about a fishing trip they will be having next Tuesday that she hoped Braeden could attend during the day. I know he would enjoy that especially since she said where they fish the kids sometimes catch upwards of 30 or more! We talked some about having a quilt made out of Ambrosia's clothes for me and also how Braeden recently became attached to a bear. I think we may make a Build a Bear and dress it in one of Ambrosia's outfits for him so that he will have a piece of his sister with him all the time. The social worker explained they have 500 volunteers in this county alone and if there was anything we needed they would find a way to get it done. I know having this kind of support will definitely be a blessing.
Today, we went back to OMO to check numbers again. Ambrosia's platelet count had decreased some but not enough to need a transfusion. Dr. Cheerva was there to see us again today and after pressing on Ambrosia's belly she is fairly certain the tumor on her liver has gotten bigger. I feel it has too, as Ambrosia's belly has looked a little more distended than usual. Dr. Cheerva then said she wasn't sure she was comfortable going forward with the irinotecan and asked if Wes and I had discussed it. We had and we are okay with only continuing the seraphanib that I have been giving her at home, which is an oral chemo. Dr. Cheerva said she doesn't want to unnecessarily put Ambrosia through chemo that will only lower her counts and put her at risk if it is not going to have any affect on her tumors. It would only mean more trips to OMO, blood transfusions, platelet transfusions, and a lot of hassle when we could be at home spending quality time together. We decided to revisit the subject on Tuesday next week when we go in for them to check her numbers.
After coming home from OMO, we had a package from A Special Wish Foundation, Inc. It had T-shirts for us to wear tomorrow on our special outing. It had a lot of toys for Ambrosia and Braeden along with a check for us to spend at the zoo on souvenirs. There was a letter explaining our entire day, along with letting us know that Cracker Barrel would be taking care of our meal as well. I am sure I will have a nice long entry to write about our day tomorrow and how special it was for us. Right now I should go to bed as the limo will be picking us up at 7:45 am!
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