A few pictures of Amira, who stole moms secret weapon and discovered that magazines sometimes have pictures of shoes, and even better than that, pictures of yummy food, all made more cool when everyone gets listen to big brother read articles to everyone. Amira had a really great day, considering it started off really, really early with a chemo treatment. We heard that her ANC and other labs are excellent right now, and the reports continue to show no malignant cells in her spinal fluid, which is excellent. The most difficult part for Amira is that her port is still not working properly, and it looks her next chemo treatment will be back down at Childrens Hospital Oakland to coincide with a third port procedure. While Im disappointed a little that the mediport continues to cause her pain, we understand that Amira has a unique little body with unique little challenges. She is hyper-flexible and has hypotonia. She also responded really well to the steroids, so she has developed some extra tissue where she didnt have it before. The mediport is supposed to rest in a little pocket of scar tissue in her chest, but its a bit elusive when the nurses attempt to access her. One of the suggestions is that using a larger port might make it easier to locate, which would be less traumatic for her. Im really happy that shes doing so well at this point in her chemotherapy. We have had several bumps in the road, but theyve been small, none have so far required that she be re-admitted for inpatient care. With Amiras ANC being so high right now, we have some mild clearance to go and do some fun things, but we still have to stay on guard against germs. Looking forward to a few days at home together, well be back on the road again soon enough. Thank you, every, every, everyone for your support. From messages and offers to help with trips to the store, helping us check mail in town, babysitting our fur babies when we are gone, to setting up fundraising opportunities to donating money and time to help our family get through this time, it is all, deeply appreciated. You have no idea how far the smallest kindness goes when things are rough. People who dont have to, but reach out and go the extra mile, or ten, or hundred, we appreciate everything that everyone has done for us. We do want you to know that we are making our appointments, we are loving each other and focusing on appreciating what we have. We are laughing and having family time, we are appreciating childhood in our unique way. While I miss my job and the old daily routine, while I miss the things we could take for granted before this diagnosis, this is our journey. There are times when it feels like were in an elevator that abruptly falls, its a windowed elevator, and were learning to jump, learning to appreciate the view from every floor we get to visit, and we are together. Were learning to trust each other while were being brave, learning to rely on one another in ways that are becoming more important. Were growing. Even though floor drops out and the poison gets poured in, so does the love, and were holding on to each other tighter and growing. We cant control certain things that area happening to us, but we get to choose how we respond to whats happening to us. Thank you for enabling and empowering us to do that.
Posted on: Fri, 24 Oct 2014 03:14:16 +0000
Trending Topics
Recently Viewed Topics
© 2015