Post Seattle
We arrived home safe and sound late Sunday night. Now, it's back to the grind!
Here's the update from Seattle.
Basically...I'm a big disappointment. I should have been better prepared and Dr. S was surprised that I haven't done any reading, any researching...nothing on Dykeratosis Congenita. It's not like me and I really need to get educated because knowledge is power.
Sam had a really good check up. We need to get him to a Pulmonologist pretty soon to get some baseline measurements on his lung function. She is mostly worried about that right now. She told Sam that when he decides what he wants to do with his life as far as work goes, he needs to pass it by her. She said under no circumstances was he allowed to be a chemist. I'm pretty sure that isn't going to be a problem! Any chemical exposure can be deadly to his lungs. She even warned about being in smoky rooms, around smokers, even bonfires. It's not that we have to be paranoid or anything but mindful. Sam was super excited when she said even cleaning chemicals are bad for him so being a janitor wouldn't be the best option either! I have to be careful with aerosols like Lysol, Air Fresheners, hairspray etc. His lungs are very fragile.
(This is funny because Sam comes cleaning with me a lot! He thinks he's getting out of a job! Sneaky kid!)
His eyes are also showing signs of the disease with scar tissue starting to build up. There is no treatment and no cure for this. We will check in with our Ophthalmologist to see if we can slow this down.
Other than that, she thinks he will do well for another couple of years and doesn't expect to see too many problems with him as long as we keep doing what we're doing! He has hardly been sick this year which is awesome! His bone marrow biopsy will be soon and as long as his blasts aren't increased, (meaning that leukemia is lurking closer) and his cellularity is stable and no funky cells show up, he will be good to wait another year.
Shelbie continues to stump the medical community but it felt so good to be listened to, validated, taught and exchange ideas without feeling worried of the fallout! She has made a new connection with a doctor that is both an immunologist and a rheumatologist. She is wondering if we need to broaden our view with Shelbie.
For her whole life, we have focused mainly on her bone marrow failure. Dr. S recently diagnosed a girl with a very similar set of symptoms with a new genetic disease. We will look there and see if anything comes of it. She is wondering if we can find the underlying problems, then maybe, the bone marrow problems can be resolved.
Dr. S is worried about the bleeding and petechiae problems despite having a platelet count above 100. It means that there is either a clotting issue or platelet functioning issue or some other underlying factor so that is why we continue to look and research and find answers. Her platelets are slowly dropping and it's just a matter of time before we end up in the same ugly place we were three years ago with a platelet count of 1...then it's more chemo.
The bad news is...the badder news is...( I know...that's not a word...)
Shelbie will be 22 in two weeks. Seattle Children's only sees children up to age 22 so we have to move on from Dr. Shimamura. The new doctor we will be heading back to, works out of Seattle Children's and University of Washington. They are good friends and she assured us that she will not lose contact with us and will continue to be on Shelbie's team to advise where she can. She will also help us transition to a new Adult Hematologist at University of Washington. Again, a close colleague of hers.
I feel confident in these changes for the most part. I am glad that Sam and Spencer will be able to continue to see her for a few more years. Since being home, I feel a lot more confident actually, that God is in these details and we are being directed to the next best thing for Shelbie.
We have a couple more trips to Seattle this year and one to Boise. I am hoping to find a Pulmonologist close to home but we will just have to see. I didn't mind the doctor Spencer saw last year in Boise but all these medical trips are really expensive.
We were able to have a little break while in Seattle. We hopped onto a couple of nice beaches before heading home and of course hit up my favorite french bakery down at Pike Place Market.
I also got to meet a blogger friend who is undergoing treatment at UW. She is amazing and awesome and it was the highlight of the trip to be able to meet her and her husband in person. It's amazing to me how the internet connects us. When I walked in her room, I almost burst into tears! I felt so much emotion but instead, I was just awkward and dumb. I'm so proud of the way she fights, her faith but most of all, her ability to be honest about her battles! I love that!
Since being home, I have been extra grateful that despite how sick they are on the inside...they look great and face each day with courage and happiness! I love that too!
We stopped at my parents on the way home and hung out at two more beaches!! That was nice to sit and do absolutely nothing!
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| Shelbie, me and Sam |
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| Shelbie, dad, Sam and mom! It was nice having them come with us! |
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| I'm not sure who these people are! |
Here's the update from Seattle.
Basically...I'm a big disappointment. I should have been better prepared and Dr. S was surprised that I haven't done any reading, any researching...nothing on Dykeratosis Congenita. It's not like me and I really need to get educated because knowledge is power.
Sam had a really good check up. We need to get him to a Pulmonologist pretty soon to get some baseline measurements on his lung function. She is mostly worried about that right now. She told Sam that when he decides what he wants to do with his life as far as work goes, he needs to pass it by her. She said under no circumstances was he allowed to be a chemist. I'm pretty sure that isn't going to be a problem! Any chemical exposure can be deadly to his lungs. She even warned about being in smoky rooms, around smokers, even bonfires. It's not that we have to be paranoid or anything but mindful. Sam was super excited when she said even cleaning chemicals are bad for him so being a janitor wouldn't be the best option either! I have to be careful with aerosols like Lysol, Air Fresheners, hairspray etc. His lungs are very fragile.
(This is funny because Sam comes cleaning with me a lot! He thinks he's getting out of a job! Sneaky kid!)
His eyes are also showing signs of the disease with scar tissue starting to build up. There is no treatment and no cure for this. We will check in with our Ophthalmologist to see if we can slow this down.
Other than that, she thinks he will do well for another couple of years and doesn't expect to see too many problems with him as long as we keep doing what we're doing! He has hardly been sick this year which is awesome! His bone marrow biopsy will be soon and as long as his blasts aren't increased, (meaning that leukemia is lurking closer) and his cellularity is stable and no funky cells show up, he will be good to wait another year.
Shelbie continues to stump the medical community but it felt so good to be listened to, validated, taught and exchange ideas without feeling worried of the fallout! She has made a new connection with a doctor that is both an immunologist and a rheumatologist. She is wondering if we need to broaden our view with Shelbie.
For her whole life, we have focused mainly on her bone marrow failure. Dr. S recently diagnosed a girl with a very similar set of symptoms with a new genetic disease. We will look there and see if anything comes of it. She is wondering if we can find the underlying problems, then maybe, the bone marrow problems can be resolved.
Dr. S is worried about the bleeding and petechiae problems despite having a platelet count above 100. It means that there is either a clotting issue or platelet functioning issue or some other underlying factor so that is why we continue to look and research and find answers. Her platelets are slowly dropping and it's just a matter of time before we end up in the same ugly place we were three years ago with a platelet count of 1...then it's more chemo.
The bad news is...the badder news is...( I know...that's not a word...)
Shelbie will be 22 in two weeks. Seattle Children's only sees children up to age 22 so we have to move on from Dr. Shimamura. The new doctor we will be heading back to, works out of Seattle Children's and University of Washington. They are good friends and she assured us that she will not lose contact with us and will continue to be on Shelbie's team to advise where she can. She will also help us transition to a new Adult Hematologist at University of Washington. Again, a close colleague of hers.
I feel confident in these changes for the most part. I am glad that Sam and Spencer will be able to continue to see her for a few more years. Since being home, I feel a lot more confident actually, that God is in these details and we are being directed to the next best thing for Shelbie.
We have a couple more trips to Seattle this year and one to Boise. I am hoping to find a Pulmonologist close to home but we will just have to see. I didn't mind the doctor Spencer saw last year in Boise but all these medical trips are really expensive.
We were able to have a little break while in Seattle. We hopped onto a couple of nice beaches before heading home and of course hit up my favorite french bakery down at Pike Place Market.
I also got to meet a blogger friend who is undergoing treatment at UW. She is amazing and awesome and it was the highlight of the trip to be able to meet her and her husband in person. It's amazing to me how the internet connects us. When I walked in her room, I almost burst into tears! I felt so much emotion but instead, I was just awkward and dumb. I'm so proud of the way she fights, her faith but most of all, her ability to be honest about her battles! I love that!
Since being home, I have been extra grateful that despite how sick they are on the inside...they look great and face each day with courage and happiness! I love that too!
We stopped at my parents on the way home and hung out at two more beaches!! That was nice to sit and do absolutely nothing!
Hi Kathy. I hope Dr. S. connects Shelbie with Dr. Keel. She has been wonderful for our 2 SDS kids.
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