Journal entry by Deb Horning —
I am actually updating this site - which is a good thing. It means I've been too busy and well to add much. A lot has happened in the last year and a half. I was reading someone's CB page today and it made me think, "why not"?
Medical update since the last post:
1. I went weekly for ECP aka Extracorporeal Photopheresis until April 2017, then every other week until this July. I am now trying every 3 weeks and seem to be doing ok. I do have to travel for a few days to Phoenix to do this and Bonnie has been a wonderful host. I have a few friends in the area too that I see.
2. After trying for a year, I was finally able to get a prescription for Jakafi for the cGVHD. This ridiculously expensive specialty medication has allowed me to taper the prednisone to 13mg every other day. I am not going to taper further for awhile. Unfortunately for me that means I still get the lovely prednisone weight and I have osteopenia/osteoporosis. I just saw a specialist at long term follow up in Seattle last month and she wants me to wean the sirolimus and photopheresis first. I am still on a boat load of medications, but I feel good and don't even need Advil. I was so stiff 2 years ago and in a lot of pain, so I'll take it.
3. I have had all the vaccinations to replace the wiped out immunities I used to have. I cannot have any live vaccinations because my immune system is still suppressed. When Charlotte had her kindergarten MMR summer 2017, I had to stay away from her for a week. So I took Noah to Phoenix and after my treatment we went to California and Las Vegas before flying home. He needed a roller coaster fix. We had a great time staying with my friend Christy and then my parents "surprised" us in Vegas. Noah's favorite part was the medieval jousting show and going on the rides at the top of the stratosphere. Now I need to have titers done to see if the vaccinations I have had are working.
4. I found a great physical therapist in Billings who helps loosen my tight wrists and lower legs. The tightness in my lower legs also has contributed to another gift, mild peripheral neuropathy in my toes.
5. Best of all - I am still in remission!!! Coming up on 4 years.
Family update:
Noah is a freshman in HS now - and he is 6'2". He ran cross country this fall and had a personal best of 17:21. He is in the platinum program at West which means he pledges to take all the honors and AP classes they have available. He went to the state Geobee for the last time this past spring and was so disappointed that he came in 5th. We really thought this would be his year. This summer he did a program called Duke TIP. He lived on the campus in Durham for 3 weeks while studying environmental toxicology. He loved it and hopes to do it again.
Paige is in 7th grade and is enjoying middle school a lot and doing very well academically. She wants to do a lot of skiing this winter and James bought her a pass to Red Lodge. She plans to play volleyball and soccer in the spring, but her favorite pastime is swinging in the backyard while listening to her headphones.
Caroline is in 4th grade. Right before school started she cut her long hair to donate for wigs for people with cancer. She said she is going to do it again and again. She is really hitting her stride in school and doing math club. She loves soccer and scored her first goal in the last game on Saturday.
Charlotte is as sassy as ever (ahem... and dramatic). She is in 1st grade and played soccer this fall. She is looking forward to skiing for the first time this winter. She is the most outgoing kid. Wherever she goes, everyone knows her name by the time she leaves.
James is busy with work and our home business too. I think I am due to take him on one of my Phoenix adventures one of these days.
I have been doing crafty things here and there and decorating the house bit by bit. I am back to all my activities from before this $*^& show started. Still winning a lot at words with friends ;-) I love crosswords, Sudoku, scrambles and other brain games.
My parents are doing pretty well. The kids loved having them here in September.
Susan survived hurricane Michael with minimal damage - good thing since everything is newly renovated in her house. Working freelance and running and managing the boys. We are trying to plan a sister getaway next year. Maybe I will finally be able to do a half marathon that I've wanted to do since Harriett told me about hers post transplant. Darn GVHD.
Some things we have done since last year:
The kids have gone to Camp Mak a Dream for the last 2 summers. They love it and get to be around other children/siblings of cancer survivors and have a ton of fun. I have gone to the Women's camp 2 more times and it just keeps getting better. This time my friend Laura came to camp (from AZ - her husband recommended Mayo to me and is 11 yrs out)!
James went with me on my first Seattle appointment. We had fun with Aliza and Larry (HS friends of mine) and toured around a bit until I had a bout of food poisoning. I have gone 2 more times myself. Thanks Hausers for letting me stay and borrow your car and all that good stuff! We even painted rocks this time.
Noah went on his 8th grade trip to DC and NYC. He got a lot out of it and really liked New York.
We were away most of June. We flew to Florida, drove up to Universal for 2 days, then on to Hilton Head where we vacationed with neighbors from Billings for a few days on the way to dropping off Noah at Duke. Then we drove back south. I had my ECP treatment at Mayo in Jacksonville and then we went back to my parents. James flew home to go back to work and I stayed with the girls for another 10 days. Susan and her boys came down to visit with us for a few of them.
This Labor Day weekend we went for a short trip to Yellowstone. It was so wonderful. 2 families that we were friends with at Forest Bluff live in Utah now and met up with us for a few days. It was fun to see the kids meet up again with friends from years ago. We had quite a group. 6 adults and 10 kids!
hmm...
This is why it is better to update more regularly.
Sorry to have written a novel. If you are still reading, congratulations! You made it. Still can't believe I'm here to write it.
Love,
Deb
Medical update since the last post:
1. I went weekly for ECP aka Extracorporeal Photopheresis until April 2017, then every other week until this July. I am now trying every 3 weeks and seem to be doing ok. I do have to travel for a few days to Phoenix to do this and Bonnie has been a wonderful host. I have a few friends in the area too that I see.
2. After trying for a year, I was finally able to get a prescription for Jakafi for the cGVHD. This ridiculously expensive specialty medication has allowed me to taper the prednisone to 13mg every other day. I am not going to taper further for awhile. Unfortunately for me that means I still get the lovely prednisone weight and I have osteopenia/osteoporosis. I just saw a specialist at long term follow up in Seattle last month and she wants me to wean the sirolimus and photopheresis first. I am still on a boat load of medications, but I feel good and don't even need Advil. I was so stiff 2 years ago and in a lot of pain, so I'll take it.
3. I have had all the vaccinations to replace the wiped out immunities I used to have. I cannot have any live vaccinations because my immune system is still suppressed. When Charlotte had her kindergarten MMR summer 2017, I had to stay away from her for a week. So I took Noah to Phoenix and after my treatment we went to California and Las Vegas before flying home. He needed a roller coaster fix. We had a great time staying with my friend Christy and then my parents "surprised" us in Vegas. Noah's favorite part was the medieval jousting show and going on the rides at the top of the stratosphere. Now I need to have titers done to see if the vaccinations I have had are working.
4. I found a great physical therapist in Billings who helps loosen my tight wrists and lower legs. The tightness in my lower legs also has contributed to another gift, mild peripheral neuropathy in my toes.
5. Best of all - I am still in remission!!! Coming up on 4 years.
Family update:
Noah is a freshman in HS now - and he is 6'2". He ran cross country this fall and had a personal best of 17:21. He is in the platinum program at West which means he pledges to take all the honors and AP classes they have available. He went to the state Geobee for the last time this past spring and was so disappointed that he came in 5th. We really thought this would be his year. This summer he did a program called Duke TIP. He lived on the campus in Durham for 3 weeks while studying environmental toxicology. He loved it and hopes to do it again.
Paige is in 7th grade and is enjoying middle school a lot and doing very well academically. She wants to do a lot of skiing this winter and James bought her a pass to Red Lodge. She plans to play volleyball and soccer in the spring, but her favorite pastime is swinging in the backyard while listening to her headphones.
Caroline is in 4th grade. Right before school started she cut her long hair to donate for wigs for people with cancer. She said she is going to do it again and again. She is really hitting her stride in school and doing math club. She loves soccer and scored her first goal in the last game on Saturday.
Charlotte is as sassy as ever (ahem... and dramatic). She is in 1st grade and played soccer this fall. She is looking forward to skiing for the first time this winter. She is the most outgoing kid. Wherever she goes, everyone knows her name by the time she leaves.
James is busy with work and our home business too. I think I am due to take him on one of my Phoenix adventures one of these days.
I have been doing crafty things here and there and decorating the house bit by bit. I am back to all my activities from before this $*^& show started. Still winning a lot at words with friends ;-) I love crosswords, Sudoku, scrambles and other brain games.
My parents are doing pretty well. The kids loved having them here in September.
Susan survived hurricane Michael with minimal damage - good thing since everything is newly renovated in her house. Working freelance and running and managing the boys. We are trying to plan a sister getaway next year. Maybe I will finally be able to do a half marathon that I've wanted to do since Harriett told me about hers post transplant. Darn GVHD.
Some things we have done since last year:
The kids have gone to Camp Mak a Dream for the last 2 summers. They love it and get to be around other children/siblings of cancer survivors and have a ton of fun. I have gone to the Women's camp 2 more times and it just keeps getting better. This time my friend Laura came to camp (from AZ - her husband recommended Mayo to me and is 11 yrs out)!
James went with me on my first Seattle appointment. We had fun with Aliza and Larry (HS friends of mine) and toured around a bit until I had a bout of food poisoning. I have gone 2 more times myself. Thanks Hausers for letting me stay and borrow your car and all that good stuff! We even painted rocks this time.
Noah went on his 8th grade trip to DC and NYC. He got a lot out of it and really liked New York.
We were away most of June. We flew to Florida, drove up to Universal for 2 days, then on to Hilton Head where we vacationed with neighbors from Billings for a few days on the way to dropping off Noah at Duke. Then we drove back south. I had my ECP treatment at Mayo in Jacksonville and then we went back to my parents. James flew home to go back to work and I stayed with the girls for another 10 days. Susan and her boys came down to visit with us for a few of them.
This Labor Day weekend we went for a short trip to Yellowstone. It was so wonderful. 2 families that we were friends with at Forest Bluff live in Utah now and met up with us for a few days. It was fun to see the kids meet up again with friends from years ago. We had quite a group. 6 adults and 10 kids!
hmm...
This is why it is better to update more regularly.
Sorry to have written a novel. If you are still reading, congratulations! You made it. Still can't believe I'm here to write it.
Love,
Deb
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