20 months off treatment
Elizabeth has been off treatment for 20 months now! I can't believe it. She is beginning to look so healthy. She is positive and energetic. We never thought she would have this amount of energy again. I think she is making up for those years napping and observing by dancing her heart out. She enjoys playing with her sister and brother, and often has to be told to take it down a notch.
Elizabeth is being followed every two months by her oncologist. We go in for a full physical with blood work. We have finally been able to talk her into having her blood drawn through the vein in her arm. She was able to give blood through her port for so long that when that was taken out, she transferred to a finger prick which was less scary, but did not give the most accurate results. It took a lot of coaxing, but last week she finally did it through her arm.
Elizabeth had an MRI in December. This was to follow up on the brain damage that was caused by her intrathecal chemotherapy. I was so proud of her. She actually went through a one and half hour MRI, non-sedated! It is difficult for an adult to be still for that long with all of the banging and clicking around you. She was completely still, with no tears, and was such a trooper! She was able to do this with the help of a child life specialist and myself talking her through it. The results were basically the same, scarring and dead tissue in her brain, some improvement in some areas, but we have decided to stop monitoring it. She will always have some long term effects from the treatment, and we will look positively at every day.
School is a bit of a challenge. She is improving daily and I am so proud. She struggles in reading and in math, but never gives up. She works through it all, with support through the school and her tutor. The chemotherapy that she was on for so long is known for causing learning difficulties, especially in the area of math. We will follow up with more cognitive testing when she is in 3rd grade, but for now, we take each day and praise her for every step that she makes!
Elizabeth participated for the 3rd year in a row in the Dreams Come True fashion show sponsored by Jaffis/Kyds store. She was beautiful and has really learned how to strut her stuff. We love continuing to help out those organizations that help us out so often. Not only when we were in the heart of treatment, but also now with surprises that we may not ordinarily be able to participate.
We still endure some financial troubles. The social workers and financial advisors tell us that most families struggle for 5+ years after the diagnosis and treatment of a child with cancer. It is hard because it seems to be just another reminder of all that happened.
Elizabeth and Luca will be turning 7 in just a few weeks. Four years ago, I would not have thought we would be here. She will be closely monitored for her entire life, and we will have to have many conversations with her so that she understands all that happened and could have happened.
I thank God daily for her health and vibrant spirit. I treasure each time I can hear her tell a joke, laugh, and dance so beautifully
Elizabeth is being followed every two months by her oncologist. We go in for a full physical with blood work. We have finally been able to talk her into having her blood drawn through the vein in her arm. She was able to give blood through her port for so long that when that was taken out, she transferred to a finger prick which was less scary, but did not give the most accurate results. It took a lot of coaxing, but last week she finally did it through her arm.
Elizabeth had an MRI in December. This was to follow up on the brain damage that was caused by her intrathecal chemotherapy. I was so proud of her. She actually went through a one and half hour MRI, non-sedated! It is difficult for an adult to be still for that long with all of the banging and clicking around you. She was completely still, with no tears, and was such a trooper! She was able to do this with the help of a child life specialist and myself talking her through it. The results were basically the same, scarring and dead tissue in her brain, some improvement in some areas, but we have decided to stop monitoring it. She will always have some long term effects from the treatment, and we will look positively at every day.
School is a bit of a challenge. She is improving daily and I am so proud. She struggles in reading and in math, but never gives up. She works through it all, with support through the school and her tutor. The chemotherapy that she was on for so long is known for causing learning difficulties, especially in the area of math. We will follow up with more cognitive testing when she is in 3rd grade, but for now, we take each day and praise her for every step that she makes!
Elizabeth participated for the 3rd year in a row in the Dreams Come True fashion show sponsored by Jaffis/Kyds store. She was beautiful and has really learned how to strut her stuff. We love continuing to help out those organizations that help us out so often. Not only when we were in the heart of treatment, but also now with surprises that we may not ordinarily be able to participate.
We still endure some financial troubles. The social workers and financial advisors tell us that most families struggle for 5+ years after the diagnosis and treatment of a child with cancer. It is hard because it seems to be just another reminder of all that happened.
Elizabeth and Luca will be turning 7 in just a few weeks. Four years ago, I would not have thought we would be here. She will be closely monitored for her entire life, and we will have to have many conversations with her so that she understands all that happened and could have happened.
I thank God daily for her health and vibrant spirit. I treasure each time I can hear her tell a joke, laugh, and dance so beautifully
