Journal entry by Jennifer Clarke —
Hello all.
I know it's been forever since I updated. After everything up in Boston and DC getting canceled (why repeat what already happened in Boston), I took a break from Emily medical for a bit through the holidays. So we are gearing up again. Let me update...
It's been a lot of work to get to this point. Lots of phone calls, lots of frustrations and a lot of tears. including more this morning.
I have been trying to reach out to the oncologist in Boston since 12/30. Multiple portal messages, multiple phone calls and yesterday I had enough. Three weeks without a response kind of sent me over the edge. I ended up calling Patient services and well... come to find out that they wanted to call the head of paediatric oncology and express the situation. I got a return call last night. In the end, Dr Janeway and I spoke this morning. Here's the current plan... as always subject to change.
Boston wants to see Emily in Feb for another set of scans and blood tests. We have an appointment for Feb 10 at the moment. There are concerns that she might have some growth on the tumour on her liver. We aren't sure. They way it was explained to us was that when we were doing the MRI's in NYC at Sloan, they were doing a full body. So it was like we were getting slices similar to that loaf of Italian bread that's on the table in the restaurant. So the details aren't as fine. Now that we are doing only abdominal and pelvic MRI's, we are now getting sandwich bread slices. So the detail is finer. This then presents the problem. Is there growth in the liver or is it the fact we've got a clearer picture and we can now get better measurements? Or not? We won't know until next month.
In addition to all this, according to Sloan's genetic testing the mutation is SDH-D but according to NIH the mutation is SDH-C. Confusing... trust me. This is watered down. So after speaking to Boston for a while, we are considering tossing everything out and redoing the genetics. Why is this important? It will help us focus where the tumours grow for the different mutations, what meds if needed in the future have worked with what mutation and so on. You have no idea how much my head is spinning. If you think you are confused... think about the fact that I'm simplifying this for you.
Now... with all this being said... here's the next part.
We have to be in Washington on March 1. Emily will go through a short bit of testing on that Monday and maybe Tuesday before... surgery on Wednesday. The plan right now is to remove the paraganglioma that's by her right kidney. Can anyone say she takes after her father? It's almost exactly where Brian's was... 12 years ago. (Wow... where did time go?). The concern is to get it out while it's small before it starts to release all it's lovely little hormones that will screw with her system. We are praying that they will be able to do it by laparoscopy but there is the chance it will need to be an open procedure. That just lengthens the recovery time.
In addition to working out how long we will be in DC for Emily... we are trying to work on getting Brian into all the programs and so on for the genetic mutations at NIH. So that's been coordination.
Now... let's factor into this... Emily is senior and we have all that stuff to deal with for the end of her high school career. Plus Regents. Plus working on setting up the home teaching for while she's out on medical again for March and most likely part of April if not May. Put into this my own medical issues... usual house hold issues and work... and other family obligations.
And if it wasn't already enough... Jessica... my best friend has been staying with us since Emily got sick. Partly because she had a hiccup in her apartment partly because I needed help with stuff around the house and with Emily. But back in November, she was driving her car for work... her norm... and got hit. Hit so bad that the car was totalled and she's not been able to return to work. I've been helping her out with all her needs too since she has suffered some brain injury that is yet to be determined for what the nature is and what can be done if anything to fix it. She's without a car, without the ability to work and without the ability to drive. It's been a bit stressful to help her out but I am happy to do it. Just getting exhausted from trying to constantly be one step in front of everything.
If "God" is only supposed to give people what they can handle... where the hell is my reward for all this. Because I've not seen a god damn thing. I can't go a week without ending up in tears. And yeah... I know self care and all that shit. But honestly... there isn't time, energy or the million other things to make it happen. Self care means I keep going without ending up in hospital myself. But if anyone has a line on a nice padded room for some r and r... make sure it has wifi for me so I can at least watch movies and the like.
I know it's been forever since I updated. After everything up in Boston and DC getting canceled (why repeat what already happened in Boston), I took a break from Emily medical for a bit through the holidays. So we are gearing up again. Let me update...
It's been a lot of work to get to this point. Lots of phone calls, lots of frustrations and a lot of tears. including more this morning.
I have been trying to reach out to the oncologist in Boston since 12/30. Multiple portal messages, multiple phone calls and yesterday I had enough. Three weeks without a response kind of sent me over the edge. I ended up calling Patient services and well... come to find out that they wanted to call the head of paediatric oncology and express the situation. I got a return call last night. In the end, Dr Janeway and I spoke this morning. Here's the current plan... as always subject to change.
Boston wants to see Emily in Feb for another set of scans and blood tests. We have an appointment for Feb 10 at the moment. There are concerns that she might have some growth on the tumour on her liver. We aren't sure. They way it was explained to us was that when we were doing the MRI's in NYC at Sloan, they were doing a full body. So it was like we were getting slices similar to that loaf of Italian bread that's on the table in the restaurant. So the details aren't as fine. Now that we are doing only abdominal and pelvic MRI's, we are now getting sandwich bread slices. So the detail is finer. This then presents the problem. Is there growth in the liver or is it the fact we've got a clearer picture and we can now get better measurements? Or not? We won't know until next month.
In addition to all this, according to Sloan's genetic testing the mutation is SDH-D but according to NIH the mutation is SDH-C. Confusing... trust me. This is watered down. So after speaking to Boston for a while, we are considering tossing everything out and redoing the genetics. Why is this important? It will help us focus where the tumours grow for the different mutations, what meds if needed in the future have worked with what mutation and so on. You have no idea how much my head is spinning. If you think you are confused... think about the fact that I'm simplifying this for you.
Now... with all this being said... here's the next part.
We have to be in Washington on March 1. Emily will go through a short bit of testing on that Monday and maybe Tuesday before... surgery on Wednesday. The plan right now is to remove the paraganglioma that's by her right kidney. Can anyone say she takes after her father? It's almost exactly where Brian's was... 12 years ago. (Wow... where did time go?). The concern is to get it out while it's small before it starts to release all it's lovely little hormones that will screw with her system. We are praying that they will be able to do it by laparoscopy but there is the chance it will need to be an open procedure. That just lengthens the recovery time.
In addition to working out how long we will be in DC for Emily... we are trying to work on getting Brian into all the programs and so on for the genetic mutations at NIH. So that's been coordination.
Now... let's factor into this... Emily is senior and we have all that stuff to deal with for the end of her high school career. Plus Regents. Plus working on setting up the home teaching for while she's out on medical again for March and most likely part of April if not May. Put into this my own medical issues... usual house hold issues and work... and other family obligations.
And if it wasn't already enough... Jessica... my best friend has been staying with us since Emily got sick. Partly because she had a hiccup in her apartment partly because I needed help with stuff around the house and with Emily. But back in November, she was driving her car for work... her norm... and got hit. Hit so bad that the car was totalled and she's not been able to return to work. I've been helping her out with all her needs too since she has suffered some brain injury that is yet to be determined for what the nature is and what can be done if anything to fix it. She's without a car, without the ability to work and without the ability to drive. It's been a bit stressful to help her out but I am happy to do it. Just getting exhausted from trying to constantly be one step in front of everything.
If "God" is only supposed to give people what they can handle... where the hell is my reward for all this. Because I've not seen a god damn thing. I can't go a week without ending up in tears. And yeah... I know self care and all that shit. But honestly... there isn't time, energy or the million other things to make it happen. Self care means I keep going without ending up in hospital myself. But if anyone has a line on a nice padded room for some r and r... make sure it has wifi for me so I can at least watch movies and the like.
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