Back in July I explained that Sadie has to have ultrasounds and blood work done every 3 months to check for tumors. She is going to be prone for tumors (cancerous tumors) because of her hemihypertrophy, That ultrasound showed that she did not have any tumors, but she had kidney stones. When looking back at all her ultrasounds that have been performed since birth she has always had these kidney stones. No one seemed to be to concerned. They said that since she was born with them, they shouldn't be an issue.
Fast forward 3 months. Last week we went for another ultrasound. The Dr just called me with the results. She said to her surprise the kidney stones are gone, but now there is a cyst in her spleen. She said that "at this point it is simply a small, generic cyst and it is not worrisome. We will do another ultrasound in 3 mo to assess the current cyst and check for anything new". Great! One more thing to worry about even though she told me not to worry about it.
The Dr also went on to have a very short, brief conversation with me. Something that she just wants me to think about. One that I really wasn't expecting at all and it kind of threw me a little bit. The Dr stated that she had spoken to Sadie genetics Dr in regards to all these ultrasounds and blood work and chances of cancer and a bazillion other subjects. She said that she is really trying to get a handle on what is truly going on with Sadie and put her best interest first. Her genetics Dr had no answers for her. Surprise! As we all know, we don't have very many answers about Sadie and we are hoping to get answers from this exome testing. The Dr (her pediatrician) said that she just wants me to think about what avenue we want to take with this little girls life. She realizes that it may depend on what the exome testing results show and she doesn't expect us to come up with an answer right now and she realizes that this answer may change as things with Sadie change, but she just wants to make sure that it is in the back of our mind.
Why is she bringing this up? Well, in this specific conversation it was because she wants to know if we want to continue with the US/blood work every 3 mo. If we are to continue and we do end up finding a cancerous tumor. What will we do with it? Do we treat it? Or do we leave it alone because this little girl has a lot going on. She was also referring to all the other specialists. Is seeing all these Dr's helping this little girls quality of life? Are their interventions or their ideas worth our time? Are we going to follow through with their plan because it will help her quality of life? All questions that I have asked myself at different points in Sadie's life, however, this conversation still caught me off guard. It's different when it is said out loud and by a Dr.
Fast forward 3 months. Last week we went for another ultrasound. The Dr just called me with the results. She said to her surprise the kidney stones are gone, but now there is a cyst in her spleen. She said that "at this point it is simply a small, generic cyst and it is not worrisome. We will do another ultrasound in 3 mo to assess the current cyst and check for anything new". Great! One more thing to worry about even though she told me not to worry about it.
The Dr also went on to have a very short, brief conversation with me. Something that she just wants me to think about. One that I really wasn't expecting at all and it kind of threw me a little bit. The Dr stated that she had spoken to Sadie genetics Dr in regards to all these ultrasounds and blood work and chances of cancer and a bazillion other subjects. She said that she is really trying to get a handle on what is truly going on with Sadie and put her best interest first. Her genetics Dr had no answers for her. Surprise! As we all know, we don't have very many answers about Sadie and we are hoping to get answers from this exome testing. The Dr (her pediatrician) said that she just wants me to think about what avenue we want to take with this little girls life. She realizes that it may depend on what the exome testing results show and she doesn't expect us to come up with an answer right now and she realizes that this answer may change as things with Sadie change, but she just wants to make sure that it is in the back of our mind.
Why is she bringing this up? Well, in this specific conversation it was because she wants to know if we want to continue with the US/blood work every 3 mo. If we are to continue and we do end up finding a cancerous tumor. What will we do with it? Do we treat it? Or do we leave it alone because this little girl has a lot going on. She was also referring to all the other specialists. Is seeing all these Dr's helping this little girls quality of life? Are their interventions or their ideas worth our time? Are we going to follow through with their plan because it will help her quality of life? All questions that I have asked myself at different points in Sadie's life, however, this conversation still caught me off guard. It's different when it is said out loud and by a Dr.
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