Ok, Ok, I know this post is WAY past due. I can't believe how fast time is flying by - it's crazy! I always wait, because it seems like we are waiting for one more answer or one more test to come back, but here is the scoop:
Mom: Mom's doctors were so thrilled with the care she has been given - because she is doing better now than she was last year. So now they have said that it could be another 2-3 years that she could be with us. Mom had decided that she didn't want to live that long if it meant behaving (or living on a schedule and following food rules). So she decided she wanted to take charge of her own schedule and eating again. So this meant all we have to do is make sure she doesn't live alone, manage her medications, and take her to her appointments. That being said, it is hard to watch her deteriorate as she makes her own living choices now, but nice to not have that fight anymore. It has been quite cramped having 5 children in one bedroom, to accommodate Mom having her own room, so we decided that it would be better for everyone if Mom moved in with Tanya or Cheri. In the meantime, Cheri's daughter and granddaughter moved up to Oregon, leaving her house empty. Her house is a three bedroom, one story house - and Cheri, like Mom, is more of a night owl. Also, with not having children at home, Cheri doesn't have to listen in her sleep for the pitter patter of little feet, allowing Mom the freedom to roam at night as she pleases. And now that Cheri doesn't have to do anything, except give Mom her meds - it isn't too much for her to take on. So a few months ago, Mom moved to Cheri's house in Citrus Heights. Also, Mom had another chemo treatment - this time a double. It was very successful, and the cancer is being destroyed. Unfortunately, once you are kicked off the transplant list - you can never get back on again. We knew that it wasn't the tumors that would kill Mom, but the liver disease - so the diagnosis remains terminal. Mom has good days and bad days, but looks forward to my brother's wedding in August.
Lucy: Lucy's last MRI looked great! The tumors that are active are remaining relatively the same size - so we don't have to do anything at this point. She still has to wear her brace on her leg (which she doesn't like at all), but we let her leave it off at home and for church.
Emmie: Emmie was diagnosed with yet another illness - which is terrible for her. It is Erythromelalgia. It causes her hands and feet to go from numb to burning like they are on fire. It is very painful for her, and they are waiting insurance approval to do some further tests, to find out if it is primary or secondary. Primary means it is its own illness - and secondary means it is a symptom of something else going on.
Everyone else is doing the same. :-) Well, Debbie has been a crazy person - dieting and doing Insanity (the crazy workout advertised on TV) - and has lost 30 lbs! YAY! She is almost back to pre-wedding weight, and getting toned. That is exciting! :-)
I think that covers everything physical that everyone asks about. As always, thank you for your love, friendship and prayers!
Tuesday, June 25, 2013
Monday, January 21, 2013
Check it out
So Ryan just did a video for the Hulbert Ranch - check out his talent! The link is: www.hulbertranch.com The video is on the home page - he is so amazing!
Friday, December 28, 2012
Hulbert Ranch Assisted Living
OK - so I know I am not ready to retire (age wise at least - even though I sure feel ready physically sometimes!), but when I do retire - this is where I want to be.
This is a new facility, and I am trying to spread the word. It is so beautiful there - with very nice rooms and common areas. There are tons of amenities (housekeeping, yummy meals, indoor swimming, sports court, exercise room, genealogy computers, etc.). It is designed for high standards (no foul language or media allowed), and is very family oriented.
Please check out their facebook page at: hulbert ranch assisted living and "LIKE" it.
Also you can see more at their website at: www.hulbertranch.com
They only have six residents at one time - so it is very individualized and personal. It is a 6,000 square foot ranch style home resting on 150 beautiful rolling acres - with paved walking paths. It was designed with active seniors in mind.
PLEASE SHARE IT WITH EVERYONE, you never know who is looking for themselves or a loved one, and this is WAY above anything else you could find.
This is a new facility, and I am trying to spread the word. It is so beautiful there - with very nice rooms and common areas. There are tons of amenities (housekeeping, yummy meals, indoor swimming, sports court, exercise room, genealogy computers, etc.). It is designed for high standards (no foul language or media allowed), and is very family oriented.
Please check out their facebook page at: hulbert ranch assisted living and "LIKE" it.
Also you can see more at their website at: www.hulbertranch.com
They only have six residents at one time - so it is very individualized and personal. It is a 6,000 square foot ranch style home resting on 150 beautiful rolling acres - with paved walking paths. It was designed with active seniors in mind.
PLEASE SHARE IT WITH EVERYONE, you never know who is looking for themselves or a loved one, and this is WAY above anything else you could find.
Sad news
It is has been such a hard year for so many people, filled with all sorts of difficulties. My heart goes out to everyone who is suffering from trials and loss.
It is with much sorrow that I add to my blog three more recent deaths.
On November 30, my dear friends father/grandfather passed away - Dick Luckow (this was only months after their mother/grandmother passed unexpectedly).
On December 15th, my Uncle Mike (on my Dad's side) passed away. We are very sad that we won't be able to make it to the funeral tomorrow, since there is snow on the passes to Oregon. We loved him and our love goes out to all those who loved and will miss him.
On December 22, my Grandpa Bill (on my Mom's side) passed away. I am trying to figure out a way to go to the funeral for him. It spans over three days next week, and is in So. Calif., so we will see if I can make it. Grandpa used to take us out to Garage Sales when we would come visit, and keep us occupied while Mom visited with her Mom, my Nana (who passed in 1986). He was a decorated war veteran, serving our country with honor. He will be missed - but I know that he is with my Nana, who was the love of his life.
I am grateful for the gospel, which gives us answers and peace in times such as these. We will mourn and shed tears for missing our loved ones - but we know they are in a better place, and we will see them again. In the words of a beloved hymn, "God be with you till we meet again"!
It is with much sorrow that I add to my blog three more recent deaths.
On November 30, my dear friends father/grandfather passed away - Dick Luckow (this was only months after their mother/grandmother passed unexpectedly).
On December 15th, my Uncle Mike (on my Dad's side) passed away. We are very sad that we won't be able to make it to the funeral tomorrow, since there is snow on the passes to Oregon. We loved him and our love goes out to all those who loved and will miss him.
On December 22, my Grandpa Bill (on my Mom's side) passed away. I am trying to figure out a way to go to the funeral for him. It spans over three days next week, and is in So. Calif., so we will see if I can make it. Grandpa used to take us out to Garage Sales when we would come visit, and keep us occupied while Mom visited with her Mom, my Nana (who passed in 1986). He was a decorated war veteran, serving our country with honor. He will be missed - but I know that he is with my Nana, who was the love of his life.
I am grateful for the gospel, which gives us answers and peace in times such as these. We will mourn and shed tears for missing our loved ones - but we know they are in a better place, and we will see them again. In the words of a beloved hymn, "God be with you till we meet again"!
Winning the PIston Cup!
So I found this old post, that somehow never got posted from May 25, 2011 (a year and a half ago). Although it is late - it was too funny not to post:
So Nathan loves Cars. If you haven't seen the movie, do! In it, the cars are racing to win the Piston Cup. So whenever we want Nathan to hurry, we always tell him "Hurry, so you can win the Piston Cup!"
So Nathan loves Cars. If you haven't seen the movie, do! In it, the cars are racing to win the Piston Cup. So whenever we want Nathan to hurry, we always tell him "Hurry, so you can win the Piston Cup!"
So the other day, Nathan decided to join Ryan in the restroom. They were both relieving themselves at the same time, and Nathan finishes and yells "I won the Piston Cup of Peeing!".
Holiday Greetings
Yes, I said Holiday. I do get annoyed when they call it a Holiday Tree (come on now - it's a Christmas Tree), but I don't get annoyed when people say Happy Holidays, because it encompasses everything - Christmas, Hanukkah, New Years, etc. And having friends from all walks of life and a variety of religious beliefs (including Jewish and Athiest), I do say Happy Holidays when it is a vast greeting. I wanted to share my Annual letter, even though it is not all inclusive, since it had to cover two years. Here it is:
Dear Family and
Friends,
Here’s what we’ve
been up to these last two busy and CRAZY years (2011 & 2012).
Emeryl has become an
expensive teenager. She was a Student
Ambassador to Australia for 17 days, got contacts, braces and an iPhone. She pays for her iPhone by babysitting and
doing office work. She is currently
homeschooling for 9th grade, and doing kickboxing with Debbie. She still is an avid reader/writer; and loves
swimming.
Lucy ended up having
brain surgery in 2011 to remove one tumor, and had to undergo therapy to walk
again after that. She continues to see
doctors in Utah, as well as regular MRI's to monitor the remaining tumors. She had a growth spurt, lost several teeth,
and continues to make new friends wherever she goes. She is enjoying her first year of middle
school in the 6th grade. She is still a
foodie, and loves animals, ladybugs, cooking and anything sweet.
Abigail continues to
do amazingly in school, and had an exciting year turning 8, and being baptized. She also started soccer, playing both
outdoor, then indoor; and loving both! Ryan
has to tell her there is NO skipping in soccer.
She has a lean, athletic body, huge hazel eyes, and, like Lucy, has lost
several teeth. She is in 3rd grade now,
and is always sharing her hugs with everyone around her. She still skips around with a smile, humming
as she goes. She loves everything
soccer, Barbie, princess and arts & crafts.
Nathan started
“real” school with all day kindergarten this year. He has an amazing ability in math and
attention to detail. He is currently
OBSESSED with electronics (iPad, iPhone, DSi, etc.). He loves to play with his friends and
sisters, building and anything to do with transportation (cars, planes, trains,
etc.).
Esther was supposed
to start preschool this year, but that didn’t work out – so instead she is
attached to Debbie all the time (which makes getting anything done next to
impossible). She has no volume control,
and talks all day. She charms everyone
around her, and loves to ask strangers “What’s your name”, then follows with
“Nice to meet you (whatever their name is)”.
She loves her Boo Bear, Bubble Guppies, dancing, drawing, “helping” and
getting into things, and everything must be PINK.
Debbie is very busy
with working from home, taking care of her Mom and 5 kids, serving as 1st
Counselor in the Relief Society Presidency at church (our women’s group),
kickboxing, housework, laundry, errands, bills, temple work, etc. She had a few skin cancer surgeries this
year, and is now on their “frequent flier” program for biopsies. She looks forward to the day she has a few
free moments to possibly pick back up scrapbooking, do beading, organizing,
baking, and having lunch occasionally with friends.
Ryan is constantly
busy with work – doing video and assisting Gary with appraisals. He plays pickle ball every Thursday, and
might join a soccer team next year. He
still loves soda, anything MAC, soda, sleep, did we mention soda?
Debbie’s Mom broke
her hip, and had surgery; then we found out she had liver disease and liver
cancer. We got her on the transplant
list, then the cancer spread, and she was no longer eligible for transplant. It has been two years of roller coaster
emotions, fundraising, tons of trips to San Francisco, tests, etc. She is terminal, and on limited time. She moved in permanently with us, and also
has a room at Tanya’s house which she visits often. For details see our blog at: (www.rynosherd.blogspot.com)
Our travels have
included (but aren’t limited to), Disneyland, a Stokes Family Reunion in Utah
(where Debbie also saw her friends Scobey and Carrianne – and Lucy saw her
doctors), Oregon (to visit family and friends, and spend this Thanksgiving with
Grandma and Grandpa Cline – where Ryan cooked the traditional “Grandma”
Thanksgiving meal), Australia (for Emmie), Hawaii, Palos Verdes and San Diego
(for Ryan and Debbie), and more.
Our hearts and
prayers go out to family and friends who have experienced loss these past few
years (the passing of loved ones, jobs, storm damages etc.). We know the value of time with loved ones and
the difficulty of trails. We are so
grateful, beyond what mere words can convey, for loving family and friends, and
the many blessings we enjoy daily. We
are grateful for our Savior, Jesus Christ, and this wonderful time of year to
celebrate His birth. For our friends of
all faiths and walks of life, we love you and wish you a Merry Christmas, Happy
Hanukkah, and a blessed New Year. You
are forever in our thoughts, hearts and prayers.
With love,
Ryan, Debbie, Emmie,
Lucy, Abigail, Nathan and Esther
Saturday, December 15, 2012
Yes, no news was good news
Sorry it has been so long since my last post. I have been so busy with travel, kids and Mom. As I said before, no news is good news; and Mom has been doing great. A year ago, we were told Mom had 6-12 months left, but plan closer to the 6 months. Now, 1 year later, doctors are amazed at Mom's health. She is doing better than she was a year ago. They are attributing that to the strict care that Tanya and I are giving to Mom.
This has been very difficult for all three of us, since Mom is an independent woman, night owl, and foodie. There are many looking from the outside, who have thought that Tanya and I are harsh and too strict with enforcing Mom's diet and schedule. They don't understand that Mom's mental capacity has become like a little child - yet she doesn't even realize it herself. Her temperament and attitude also have changed (people with liver disease get very mean and stubborn), yet she doesn't behave that way around others; so people don't understand the situations we experience "behind the scenes" of what they see.
The results of our tough love, are that Mom is alive, not bedridden, and doing better than she was a year ago. She is able to travel, visit with people she loves, and finish life long goals. We have been able to have her with us longer than the doctors thought possible. Unfortunately, it also means a lot of fighting and heartache to keep her on track. Tanya nor I want to fight with her, but were willing to do what the doctor asked us to, to keep her healthy and alive.
When the doctor told Mom that due to our strict care, she now could live 2-3 years or more - this did not make Mom happy. She did not want to live that long if she had to stay on a schedule and specific diet. After much discussion and heartache, she has informed her doctor that she wants him to do all he can to keep her alive and mobile as long as possible; however, she is going to take back her control of eating what she wants, having her own sleeping schedule, etc. The doctor was heartbroken and told her that she didn't have the mental clarity anymore to make her own decisions wisely, and it was a mistake that would come with severe consequences. He also told her that he didn't feel that she should be making this decision due to the confusion and mental incapacity's that she experiences which come with the disease (she has memory loss, no sense of time, confusion, etc - but doesn't realize the extent of it herself), but that he had to leave that up her.
She says that depending on how it goes, she may go back to having Tanya and I control her schedule and diet again; but she will decide that. She has decided that when she becomes bedridden from her choices, that she wants us to put her in a nursing home for the last little bit of her life.
It will be hard for Tanya and I to watch this, since we know that some of her wrong choices will be from lack of will power, while others will be due to lack of understanding (confusion). While I am heartbroken that she will shorten her time with us, I also feel that I would rather have 3 months of enjoying her, than 3 years of fighting with her. I wish I could have 3 years of her making the right choices on her own, keeping her quality of health and quantity of time - but I have to respect her wishes and choices.
Since she still wants the doctors to do all they can, we will still have trips to San Francisco, scans, treatments, etc. She also wants to have surgery on her knee to remove that screw that is too long, which now causes her a lot of pain since there is no muscle, just skin rubbing against the screw on either side.
This has been a very difficult post for me, as I am NOT eloquent of speech or pen, and always seem to put my foot in my mouth, and offend without any desire or intention to do so. It is such a touchy situation, and I mean no disrespect to my Mother, whom I love dearly. I hope I have relayed the information in a sensitive way, with all the love I have for her. One day I hope to have time to post the light and cute things my children do and say. For example, the other day Emmie asked Esther what her favorite color was, and Esther said "Pink". Emmie then asked what her other favorite color was, to which Esther replied "darker pink". I love my Mom, my kidlings, and my husband!
This has been very difficult for all three of us, since Mom is an independent woman, night owl, and foodie. There are many looking from the outside, who have thought that Tanya and I are harsh and too strict with enforcing Mom's diet and schedule. They don't understand that Mom's mental capacity has become like a little child - yet she doesn't even realize it herself. Her temperament and attitude also have changed (people with liver disease get very mean and stubborn), yet she doesn't behave that way around others; so people don't understand the situations we experience "behind the scenes" of what they see.
The results of our tough love, are that Mom is alive, not bedridden, and doing better than she was a year ago. She is able to travel, visit with people she loves, and finish life long goals. We have been able to have her with us longer than the doctors thought possible. Unfortunately, it also means a lot of fighting and heartache to keep her on track. Tanya nor I want to fight with her, but were willing to do what the doctor asked us to, to keep her healthy and alive.
When the doctor told Mom that due to our strict care, she now could live 2-3 years or more - this did not make Mom happy. She did not want to live that long if she had to stay on a schedule and specific diet. After much discussion and heartache, she has informed her doctor that she wants him to do all he can to keep her alive and mobile as long as possible; however, she is going to take back her control of eating what she wants, having her own sleeping schedule, etc. The doctor was heartbroken and told her that she didn't have the mental clarity anymore to make her own decisions wisely, and it was a mistake that would come with severe consequences. He also told her that he didn't feel that she should be making this decision due to the confusion and mental incapacity's that she experiences which come with the disease (she has memory loss, no sense of time, confusion, etc - but doesn't realize the extent of it herself), but that he had to leave that up her.
She says that depending on how it goes, she may go back to having Tanya and I control her schedule and diet again; but she will decide that. She has decided that when she becomes bedridden from her choices, that she wants us to put her in a nursing home for the last little bit of her life.
It will be hard for Tanya and I to watch this, since we know that some of her wrong choices will be from lack of will power, while others will be due to lack of understanding (confusion). While I am heartbroken that she will shorten her time with us, I also feel that I would rather have 3 months of enjoying her, than 3 years of fighting with her. I wish I could have 3 years of her making the right choices on her own, keeping her quality of health and quantity of time - but I have to respect her wishes and choices.
Since she still wants the doctors to do all they can, we will still have trips to San Francisco, scans, treatments, etc. She also wants to have surgery on her knee to remove that screw that is too long, which now causes her a lot of pain since there is no muscle, just skin rubbing against the screw on either side.
This has been a very difficult post for me, as I am NOT eloquent of speech or pen, and always seem to put my foot in my mouth, and offend without any desire or intention to do so. It is such a touchy situation, and I mean no disrespect to my Mother, whom I love dearly. I hope I have relayed the information in a sensitive way, with all the love I have for her. One day I hope to have time to post the light and cute things my children do and say. For example, the other day Emmie asked Esther what her favorite color was, and Esther said "Pink". Emmie then asked what her other favorite color was, to which Esther replied "darker pink". I love my Mom, my kidlings, and my husband!
Sunday, May 27, 2012
The answer is No :-(
So we went back to SF for a few days, to have another scan done, and see Mom's doctor. After taking it to the Liver Transplant Team, they have decided to give an absolute no for putting Mom back on the transplant list.There reason her doctor was still fighting to get her back on the list, despite her issues that prohibit her from being on the transplant list were as such. He said that the care that Tanya and I have given to Mom is off the charts incredible. He couldn't believe how well she was doing for how low her numbers are. He also said that the cancer invading one side of her liver was still pretty much the same as three months ago. Also, her liver and kidneys are functioning very well still.
The reasons he couldn't get the team to even give her more time, or another chance was two fold. First of all her weight is way too low. Her BMI was below the allowed amount. Secondly, there is a second tumor, that is in the other side of her liver. That tumor was small and not doing anything, so they just ignored it before. However, now it has grown, and is becoming active. It is still fairly small, but with the growth and activity, combined with the other tumor being an invasive cancer (as opposed to a single mass) is what kicked her off permanently.
They said that there is no way of knowing how long she has at this point, because doctors can always be wrong in these situations. So it could be as long as 6-12 months with good care and Mom doing all she should. Or it could be as short as a month or two.
Mom is doing fine with the news, and her biggest concern is when she can begin eating what she wants! The problem is that the worse her eating habits, the faster she will decline. She has agreed to stick with her eating plan at least for another month, until we have our trip to Disneyland at the end of June. After that, we will see what happens.
I will keep you updated - and again, thank everyone for their love and support through this roller coaster we have been on. And a huge thank you to everyone who offered to let us use their donations for Mom's continued care and funeral plans. She wants to have just one graveside service and be buried in Grants Pass, OR. We have already begun to get everything in order, and are getting as much of that paid for as possible right now, which wouldn't have been possible without your help! Thank you, thank you!
The reasons he couldn't get the team to even give her more time, or another chance was two fold. First of all her weight is way too low. Her BMI was below the allowed amount. Secondly, there is a second tumor, that is in the other side of her liver. That tumor was small and not doing anything, so they just ignored it before. However, now it has grown, and is becoming active. It is still fairly small, but with the growth and activity, combined with the other tumor being an invasive cancer (as opposed to a single mass) is what kicked her off permanently.
They said that there is no way of knowing how long she has at this point, because doctors can always be wrong in these situations. So it could be as long as 6-12 months with good care and Mom doing all she should. Or it could be as short as a month or two.
Mom is doing fine with the news, and her biggest concern is when she can begin eating what she wants! The problem is that the worse her eating habits, the faster she will decline. She has agreed to stick with her eating plan at least for another month, until we have our trip to Disneyland at the end of June. After that, we will see what happens.
I will keep you updated - and again, thank everyone for their love and support through this roller coaster we have been on. And a huge thank you to everyone who offered to let us use their donations for Mom's continued care and funeral plans. She wants to have just one graveside service and be buried in Grants Pass, OR. We have already begun to get everything in order, and are getting as much of that paid for as possible right now, which wouldn't have been possible without your help! Thank you, thank you!
Thursday, May 10, 2012
Mom moved, and was in the hospital - twice!
Sorry I haven't written in a while, but we have been very busy moving Mom in with us. She was going to live with Tanya, because she has more space and cleared her schedule to care for Mom. However, because of how Medical and Medicare works, Mom couldn't leave the county - or it would change her benefits and doctors. It was very sad for Mom to leave her home at the Dold's - she really loved it there. It was also hard for her to go through all of her things, and decide what to keep and what to get rid of. Unfortunately for me, she couldn't decide very well - so I now have a garage, living room, dining room, entry way and Mom's bedroom full of bins and boxes. It looks like a hoarders house around here - but we will get through all of that! Thanks to the loving help of Tina, Amy, Katy, and Cindie - we were able to be out of the house on time.
See, Mom decided we didn't have enough excitement, so on Sunday, April 29th, we had to take Mom to the hospital, because she was extra confused, shaky, etc. We had trouble getting a blood pressure reading, and when we finally did, it was way too low. So they admitted her, and found it was a lot of small things together causing the problem. Mom doesn't want me to share the details, except to say that her body wasn't functioning properly. So the next day they released her, and we got home about 5:30pm, and got her settled at home - then we went to her old house to finish moving things from the shed, yard and to clean. That is where the loving help of Tina Becker, Cindie Blodgett and Amy & Katy Sellers saved us! They had come during the day and did almost all of the cleaning!! All we had left were the neurotic finishing touches we always do (washing walls, moving out the fridge and cleaning behind it, vacuuming (there wasn't a good vacuum there for them), and blinds. Thank you so much for heaven's angels on earth!! Because of their loving service, we weren't there until 2 am cleaning! I was actually in bed by 10:30pm that night!
However, Mom began having issues again - so I brought her back to the hospital the next day. They admitted her again, and ended up moving her to ICU. They gave her plasma, more fluids and did some more tests. Again, Mom doesn't want any details given - except that she is doing fine now, with the exception of having the ascites back again. She forgot how miserable it was, and although she isn't nearly as huge as she used to get, she still looks pregnant (just not 9 months with triplets)! They filled her with fluids, and dropped down one of her water pills, because they felt it was dehydrating her too much, which was causing the blood pressure issues. We are working on finding a balance to all that again.
So, now, if anyone wants to send a note to Mom, you can send it to my house. You don't have to put a "c/o" on it - just address it to her, and it gets here just fine.
Next week we will be going to San Francisco, to have the scan that will decide if she gets back on the list or not! We will be in San Francisco on Monday and Tuesday - and then the doctor will be presenting everything to the board on Wednesday. So we should have a final answer by Thursday. I'll blog again when we have an update! Until then....have a wonderful Mother's Day coming up, and be extra nice to your Mommy - life is short, we all make mistakes, but love....love is eternal!
See, Mom decided we didn't have enough excitement, so on Sunday, April 29th, we had to take Mom to the hospital, because she was extra confused, shaky, etc. We had trouble getting a blood pressure reading, and when we finally did, it was way too low. So they admitted her, and found it was a lot of small things together causing the problem. Mom doesn't want me to share the details, except to say that her body wasn't functioning properly. So the next day they released her, and we got home about 5:30pm, and got her settled at home - then we went to her old house to finish moving things from the shed, yard and to clean. That is where the loving help of Tina Becker, Cindie Blodgett and Amy & Katy Sellers saved us! They had come during the day and did almost all of the cleaning!! All we had left were the neurotic finishing touches we always do (washing walls, moving out the fridge and cleaning behind it, vacuuming (there wasn't a good vacuum there for them), and blinds. Thank you so much for heaven's angels on earth!! Because of their loving service, we weren't there until 2 am cleaning! I was actually in bed by 10:30pm that night!
However, Mom began having issues again - so I brought her back to the hospital the next day. They admitted her again, and ended up moving her to ICU. They gave her plasma, more fluids and did some more tests. Again, Mom doesn't want any details given - except that she is doing fine now, with the exception of having the ascites back again. She forgot how miserable it was, and although she isn't nearly as huge as she used to get, she still looks pregnant (just not 9 months with triplets)! They filled her with fluids, and dropped down one of her water pills, because they felt it was dehydrating her too much, which was causing the blood pressure issues. We are working on finding a balance to all that again.
So, now, if anyone wants to send a note to Mom, you can send it to my house. You don't have to put a "c/o" on it - just address it to her, and it gets here just fine.
Next week we will be going to San Francisco, to have the scan that will decide if she gets back on the list or not! We will be in San Francisco on Monday and Tuesday - and then the doctor will be presenting everything to the board on Wednesday. So we should have a final answer by Thursday. I'll blog again when we have an update! Until then....have a wonderful Mother's Day coming up, and be extra nice to your Mommy - life is short, we all make mistakes, but love....love is eternal!
Tuesday, March 20, 2012
Indiana said no :-(
So we got a call from Dr. Frederick today with bad news. The team in Indiana reviewed Mom's case, and they are not willing to take her. This is sad, because they are one of the most liberal at taking higher risk patients - so if they said no, it isn't good for other centers either. So at this point, we have to wait another 2 months, and then Mom will have a CT scan. If it looks the same or better, they will put her back on the list in San Francisco, but if not, then they will just let us know how long (at their best guess), that we can expect her to live.
They are not going to continue the radiation treatments, even though Mom did extremely well with them. This is because they are not sure if what they are thinking could be the cancer spreading is actually inflamed cells from the treatments. So, if that is the case, then by avoiding radiation the inflamed cells will calm down, and it will show on the CT scan, thereby putting her back on the list.
When the time for the CT scan comes closer, she will be having a priesthood blessing, and we will be asking those who are able and willing to fast and pray for her. We will keep you updated - but for now, it will most likely be no news for a few months.
Thanks again for all your love and support, prayers and well wishes! We love you all and appreciate you so!
They are not going to continue the radiation treatments, even though Mom did extremely well with them. This is because they are not sure if what they are thinking could be the cancer spreading is actually inflamed cells from the treatments. So, if that is the case, then by avoiding radiation the inflamed cells will calm down, and it will show on the CT scan, thereby putting her back on the list.
When the time for the CT scan comes closer, she will be having a priesthood blessing, and we will be asking those who are able and willing to fast and pray for her. We will keep you updated - but for now, it will most likely be no news for a few months.
Thanks again for all your love and support, prayers and well wishes! We love you all and appreciate you so!
Thursday, March 8, 2012
Happy Birthday Nathan!
Nathan is 5 today! He has opted out of his birthday party, and instead wants to fly in a plane for his birthday. So we are scheduling a flight for him. The pilot was unable to do it today - so it will most likely be next week. Nathan is still obsessed with all things boy! Cars, planes, trains, building, destroying, etc. He is the typical annoying little brother to his older sisters, getting into their things, harassing them; and an amazing, protective and loving big brother to Esther. She just lights up when he comes home from school. He plays with her, shares with her, talks with her, and sneaks with her! He does have a mind of his own that is always ticking, scheming, thinking, planning and contemplating! He is very loving, funny and intelligent! We are so grateful to have him in our family! We love you Nathan, Happy Birthday!!
Still hopeful!
Ok, so I know it has been a while since my last post, and I apologize. I am behind in everything, and just trying to tackle one day at a time with my crazy schedule.
So the really good news is on Lucy. She was having symptoms (eye twitching and her right foot feeling like it had a 100 lb weight in it), so they moved her MRI up. The results show that the tumor on her brain stem, and the other active tumor are stable. The spot where they removed the tumor has a little "lighting up" on the MRI, but the surgeon doesn't think that is the tumor returning. He said that she is probably just getting lazy about remembering to pick up her foot/toes, so it is getting harder. As for the eye twitching - it is her eye lids, not her eyeball that is twitching, so that just means she is tired (which makes sense, since Lucy has trouble sleeping), as well as the fact that her pupils look good. So we are clear for another 6 months when she has another MRI.
On the Mom front it was good news also. The doctors reviewed her case, and although they are still concerned and not sure it is a good risk; they are pleased that her liver is holding up so well, and some of her test scores look really good. Also, they are very pleased with the radiation treatment that seems to have worked very well, and Mom did just fine with it. They said the biggest factor was Mom's support team (Tanya and I), and how dedicated and willing we were to do anything it takes to save our Mom. So here is the scoop: They have decided to give it 3 more months. After that time, they will redo the scans - and if she is the same or better than she is now, they will put her back on the list. If she is worse, they will give us a definite no for the list at that point. This is all with the understanding that if they put her back on the list, and they get a liver for her, that when they open her up to do the transplant, if they find that the cancer has grown and/or spread, they will close her back up without the transplant, and give the liver to the backup person; and she will be unable to get a transplant at all, putting her back as terminal.
They also are referring her case to a team in Indiana. In Indiana they are not as conservative as they are here when it comes to transplants. Also there is less of a wait. They usually transplant people with a meld score of 22, and Mom has a meld score of 28, which means that she would be the absolute top of the list for a liver. That, plus the fact that she is A+, which is a very common blood type, means she would get a liver very quickly. I do have to research and see what will happen with her insurance (which usually will NOT cover surgery outside of CA, unless you are traveling and have an emergency). First though, we have to see if the team in Indiana is willing to add Mom to their list. The doctor said he will send everything over, and we should hear back something by Monday, March 19th. This will be in addition to the recheck in 3 months here. They are hoping that if Indiana takes her, and it works out, that she will have a liver and be recouping in 3 months, instead of just finding out if she is eligible here.
So sorry for my rambling and poor grammar, I haven't slept well in a while, and really couldn't sleep last night. I will blog again when I have a new update. :-)
So the really good news is on Lucy. She was having symptoms (eye twitching and her right foot feeling like it had a 100 lb weight in it), so they moved her MRI up. The results show that the tumor on her brain stem, and the other active tumor are stable. The spot where they removed the tumor has a little "lighting up" on the MRI, but the surgeon doesn't think that is the tumor returning. He said that she is probably just getting lazy about remembering to pick up her foot/toes, so it is getting harder. As for the eye twitching - it is her eye lids, not her eyeball that is twitching, so that just means she is tired (which makes sense, since Lucy has trouble sleeping), as well as the fact that her pupils look good. So we are clear for another 6 months when she has another MRI.
On the Mom front it was good news also. The doctors reviewed her case, and although they are still concerned and not sure it is a good risk; they are pleased that her liver is holding up so well, and some of her test scores look really good. Also, they are very pleased with the radiation treatment that seems to have worked very well, and Mom did just fine with it. They said the biggest factor was Mom's support team (Tanya and I), and how dedicated and willing we were to do anything it takes to save our Mom. So here is the scoop: They have decided to give it 3 more months. After that time, they will redo the scans - and if she is the same or better than she is now, they will put her back on the list. If she is worse, they will give us a definite no for the list at that point. This is all with the understanding that if they put her back on the list, and they get a liver for her, that when they open her up to do the transplant, if they find that the cancer has grown and/or spread, they will close her back up without the transplant, and give the liver to the backup person; and she will be unable to get a transplant at all, putting her back as terminal.
They also are referring her case to a team in Indiana. In Indiana they are not as conservative as they are here when it comes to transplants. Also there is less of a wait. They usually transplant people with a meld score of 22, and Mom has a meld score of 28, which means that she would be the absolute top of the list for a liver. That, plus the fact that she is A+, which is a very common blood type, means she would get a liver very quickly. I do have to research and see what will happen with her insurance (which usually will NOT cover surgery outside of CA, unless you are traveling and have an emergency). First though, we have to see if the team in Indiana is willing to add Mom to their list. The doctor said he will send everything over, and we should hear back something by Monday, March 19th. This will be in addition to the recheck in 3 months here. They are hoping that if Indiana takes her, and it works out, that she will have a liver and be recouping in 3 months, instead of just finding out if she is eligible here.
So sorry for my rambling and poor grammar, I haven't slept well in a while, and really couldn't sleep last night. I will blog again when I have a new update. :-)
Monday, January 9, 2012
A Ray of Hope
So, we went to SF to have an angiogram done on Mom. The purpose of the angiogram is to check and make sure that this new radiation they are doing on her (called Y90) will go directly to the tumor, and not to the lungs or elsewhere. Apparently the liver can handle this strong radiation, but the lungs and other organs cannot. So the angiogram is done to make sure that it will go directly to the tumor in the liver and not elsewhere, as well as to map out the "plan of attack", and also to determine how much radiation is needed. The good part about this is that the radiation is so centralized and specific, that it won't make her sick at all.
However, it turns out that Dr. Wack, who is on the liver transplant team as well as the doctor doing the radiation, was doing the angiogram, and said that they might have made a mistake in reading the last MRI. That although everyone was sure that the cancer had grown and was spreading into the major vein going to the liver, that it could have been actually dead cells from lack of blood flow that just presented as part of the cancer. So long story short, they are going to be doing the radiation treatment in the next 10 days or so. Then 4 weeks after that, they will do a follow up MRI. When they have that MRI as well as the films from the radiation, and can confirm that the cancer hasn't gone past a 5 or spread outside the liver, then Dr. Wack and Dr. Frederick will both present to the Liver Transplant Team to see if they will put Mom back on the transplant list. There are other things that will come into play as well, such as Mom's current health and nutrition. Her last blood tests showed malnutrition - and that worries Dr. Frederick that the team won't put her back on the list. So there are a lot of "ifs" at play here - but there is still a glimmer of hope! We are trying not to get too excited, and are currently living in limbo and won't have any news for another 2 months. But during this time, Mom will work on exercise, sleeping routines and nutrition to do her part, and we will all be praying and helping her the best we can. :-) It is all in God's hands, as we have always known. :-)
However, it turns out that Dr. Wack, who is on the liver transplant team as well as the doctor doing the radiation, was doing the angiogram, and said that they might have made a mistake in reading the last MRI. That although everyone was sure that the cancer had grown and was spreading into the major vein going to the liver, that it could have been actually dead cells from lack of blood flow that just presented as part of the cancer. So long story short, they are going to be doing the radiation treatment in the next 10 days or so. Then 4 weeks after that, they will do a follow up MRI. When they have that MRI as well as the films from the radiation, and can confirm that the cancer hasn't gone past a 5 or spread outside the liver, then Dr. Wack and Dr. Frederick will both present to the Liver Transplant Team to see if they will put Mom back on the transplant list. There are other things that will come into play as well, such as Mom's current health and nutrition. Her last blood tests showed malnutrition - and that worries Dr. Frederick that the team won't put her back on the list. So there are a lot of "ifs" at play here - but there is still a glimmer of hope! We are trying not to get too excited, and are currently living in limbo and won't have any news for another 2 months. But during this time, Mom will work on exercise, sleeping routines and nutrition to do her part, and we will all be praying and helping her the best we can. :-) It is all in God's hands, as we have always known. :-)
Monday, December 5, 2011
Very sad news....
Well, we went and met with Dr. Merriman today, and our fears were confirmed. Mom has been taken off the transplant list, and has been given 6-12 months to live. It will most likely be 6 months - unless they can do some radiation and chemo pills, that may make it go to the 12 months, without the usual Chemo side effects. We will be going to San Francisco to be doing a test to see if they can do the radiation they want to try, which may give her that extra six months.
The tumor which was a size 2 has grown to a size 7, and it has spread into the main vein going to her liver, which has made it go from stage 2 to a stage 4.
We appreciate all of your prayers and love you have given to us all. For those who donated cash, we will be sending it back to you, since it was sent for the transplant, and she can no longer have it; and for those who supported our fundraising efforts - we will use that cash to try to get her through the rest of her appointments and procedures over the next 6-12 months, and then if we have any left, put that towards her funeral costs which we will need to cover.
Thank you again sooo much for your love and support. We are all hanging in there. Our faith in our Lord and Savior, Jesus Christ, as well as our knowledge of the plan of salvation strengthens us during this difficult time. We know we will be together again, and our tears shed are just for knowing how much we will miss her until our time to return to our Heavenly home comes.
The tumor which was a size 2 has grown to a size 7, and it has spread into the main vein going to her liver, which has made it go from stage 2 to a stage 4.
We appreciate all of your prayers and love you have given to us all. For those who donated cash, we will be sending it back to you, since it was sent for the transplant, and she can no longer have it; and for those who supported our fundraising efforts - we will use that cash to try to get her through the rest of her appointments and procedures over the next 6-12 months, and then if we have any left, put that towards her funeral costs which we will need to cover.
Thank you again sooo much for your love and support. We are all hanging in there. Our faith in our Lord and Savior, Jesus Christ, as well as our knowledge of the plan of salvation strengthens us during this difficult time. We know we will be together again, and our tears shed are just for knowing how much we will miss her until our time to return to our Heavenly home comes.
Wednesday, November 30, 2011
Your prayers needed....
Hello everyone! So sorry I didn't get to do a wonderful "Counting my Blessings" Thanksgiving post for my blog. We are so very blessed, and were fortunate enough to get permission for Mom to go to Oregon for Thanksgiving as well as Grandpa Stokes' 90th Birthday celebration. It was so wonderful to spend time with family and friends - and as always, was too short! Someday, my blog will be filled with cute and funny stories, thoughtful insights and whatever else crosses my mind that I will have time to post. But until my life slows down a little, it will continue to serve as an update on the health and status of Mom and my kidlings.
On a more somber note - Mom received a call a few minutes ago from her hepatologist, Dr. Merriman. I don't remember if I mentioned before, but Dr. Merriman is moving to his homeland, Ireland. He has a great job there waiting, as well as all of his family - and with small children, he and his wife feel it would be good to have them grow up around their family. We love him so, and were very sad at our last appointment with him. We were already transferred to one of his colleagues, and weren't going to get to see him again before he left in a few weeks. However, after the Liver Transplant Team (including Dr. Merriman) reviewed the last scan that Mom had done on her liver on the 18th, he called himself and said that he had very serious news, and that he wanted to be the one to tell us, and he wanted to tell us in person. So he will be in Sacramento on Monday, and we will most likely have an afternoon appointment with him to find out what is going on. It is very scary to think of what it might be that he wants to see us himself, and in person.
We do know that all things are in God's hands, and He has a purpose and a plan for each one of us. Please pray for us, that we may feel peace, and not fear and worry as we wait to find out what serious news he has for us. I know that we can get through anything with faith in our Lord, Jesus Christ - no matter what the news. I will update you all as soon as I return home from the appointment on Monday evening. Thank you so much for your continued love, support and prayers.
On a more somber note - Mom received a call a few minutes ago from her hepatologist, Dr. Merriman. I don't remember if I mentioned before, but Dr. Merriman is moving to his homeland, Ireland. He has a great job there waiting, as well as all of his family - and with small children, he and his wife feel it would be good to have them grow up around their family. We love him so, and were very sad at our last appointment with him. We were already transferred to one of his colleagues, and weren't going to get to see him again before he left in a few weeks. However, after the Liver Transplant Team (including Dr. Merriman) reviewed the last scan that Mom had done on her liver on the 18th, he called himself and said that he had very serious news, and that he wanted to be the one to tell us, and he wanted to tell us in person. So he will be in Sacramento on Monday, and we will most likely have an afternoon appointment with him to find out what is going on. It is very scary to think of what it might be that he wants to see us himself, and in person.
We do know that all things are in God's hands, and He has a purpose and a plan for each one of us. Please pray for us, that we may feel peace, and not fear and worry as we wait to find out what serious news he has for us. I know that we can get through anything with faith in our Lord, Jesus Christ - no matter what the news. I will update you all as soon as I return home from the appointment on Monday evening. Thank you so much for your continued love, support and prayers.
Saturday, November 19, 2011
We are home again!
Hello all! So we got home from San Francisco late last night. The doctors think that the cause of the bleeding was a swollen vein in her colon that burst, (similar to the ones in her esophagus that had to be banded). They won't be banding these, as the bleeding only lasted for less than a day. If it bled longer, they would have to do something. We were able to talk to the head of the transplant team, and he gave us some valuable information as to what to watch for at this point with Mom. As usual, the entire team at CPMC were wonderful, compassionate and amazing!!
We also had that kind of care from Mercy Folsom. We were amazed at how fast they processed Mom through the ER. Also, they were able to do another paracentesis, and drain 4 liters out of her abdomen, helping relieve some of the pain from the weight and pressure of the ascites. They have added two new meds, to help with that - so we will see how that works. Their new wing, which Mom was in, has private rooms, with a fold out couch and sleeping chair, so your family can sleep with you if they want. Very family friendly.
As of Mom's last doctor appointment (the day before the ER and hospital stays), the doctor recommended that it was time that Mom move in with someone, so we can watch her more closely for her times of confusion (encephalopathy) or in case of liver failure. So Mom will be doing the round-robin with Tanya, Cheri and I, in two week time slots. I will try to be good about posting Mom's location, for anyone who wants to get ahold of her (as before). We agreed to let Mom have until Tuesday, to get some things done around her house. She has to call in with Tanya or me every 4 hours or less, so we are sure she is OK. :-)
Until next time.....have a great weekend!!
We also had that kind of care from Mercy Folsom. We were amazed at how fast they processed Mom through the ER. Also, they were able to do another paracentesis, and drain 4 liters out of her abdomen, helping relieve some of the pain from the weight and pressure of the ascites. They have added two new meds, to help with that - so we will see how that works. Their new wing, which Mom was in, has private rooms, with a fold out couch and sleeping chair, so your family can sleep with you if they want. Very family friendly.
As of Mom's last doctor appointment (the day before the ER and hospital stays), the doctor recommended that it was time that Mom move in with someone, so we can watch her more closely for her times of confusion (encephalopathy) or in case of liver failure. So Mom will be doing the round-robin with Tanya, Cheri and I, in two week time slots. I will try to be good about posting Mom's location, for anyone who wants to get ahold of her (as before). We agreed to let Mom have until Tuesday, to get some things done around her house. She has to call in with Tanya or me every 4 hours or less, so we are sure she is OK. :-)
Until next time.....have a great weekend!!
Thursday, November 17, 2011
Back in the hospital with Mom
Yesterday at 3:30 Mom was at my house, and started bleeding rectally with clots. (Sorry for the gruesome details, up didn't know how else to say it, than to just say it!). I took her to the ER and she was admitted and given a room. They wanted to transfer her to San Francisco last night, but they didn't have any available beds. Today they are doing a peresentesis to release some of the fluid in her abdomen, and they are still trying to transfer us to SF. They think the bleeding has stopped, but arent sure. I will keep you updated. No news is good news.
Also, on the Lucy front, her tumor on her brainstem is growing. We have to keep a watch to make sure she doesn't start having symptoms. If she doesn't, then we get to wait another 6 months to do another MRI. I still have to meet with. The neurologist on Monday to get his opinion and reading of the MRI we just had done.
Good news is, Emmie was chosen out of several kids for the talent show at her school. She will be singing "Rockin' Robin" and she is very excited.
Sunday, October 23, 2011
Family Picture Added below
OK - so I added a more recent (Feb. 2011) family picture below. I hope you enjoy! :-)
Back from San Francisco
So we are finally home from San Francisco. We arrived home last night after 10pm. Everything went very well with Mom's procedure. She was bright and alert right after when Tanya and I got to see her. The doctor's said that it seems that her liver responded well - but again, we won't know how successful it was until after the cat scan in 4 weeks. While we were there, they also did a perecentesis (draining of excess abdomen fluid), which was fabulous, since Mom was so uncomfortable with the ascites. She looked like she was pregnant with twins, and could barely eat or drink a few bites before she didn't have any more room. They took out 4 liters (imagine two of the large soda bottles of fluid just floating around your organs in your stomach). So she was able to eat a meal comfortably for the first time in a while. Since the ascites began after the Microwave Ablation, we jokingly call Mom's belly, her ascites baby. This is only a temporary fix, as it will come back, since her liver disease has worsened from the Microwave Ablation. However, the Ablation did kill a lot of the tumor, which hopefully will keep it from spreading or growing past a 5 (which would kick her off the transplant list). We are grateful to all the wonderful doctors, nurses and staff at CPMC for their wonderful loving care they always give. We are there so much, it is our second home.
On the downside, we were hoping to meet up with Mom's cousin, Mary K. and her husband Joe for a short visit before heading home last night. However, by the time they finally released Mom from the hospital, and we drove to Mary K's hotel - we couldn't find it, or reach her on her cell. Boohoo! We are hoping to get to see her soon.
Also, while I was gone, Esther had a bit of excitement. She decided to climb up the dresser in her room (a tall dresser), to get to Nathan's light (it's a Lightening McQueen light from the Disney movie "Cars"). She got halfway up, and the entire dresser tipped over right on top of her. It was very scary - but Ryan checked her out completely, and watched her all night - and she came out of it with only a swollen eye, which is gone this morning. Boy, with 5 kids I have never had a dresser fall on one of them before.
Well, time to go and finish getting the kids ready for church. Today is the big Children's Sacrament Meeting Program. Abigail and Lucy have both their parts memorized, and Nathan is excited to sing (and will need a little help with his parts still). Mom will be coming down for it, and then we will be heading over to Cheri's house - for a belated birthday party of Perelyhn. :-) Have a wonderful day. 'Til next time...
On the downside, we were hoping to meet up with Mom's cousin, Mary K. and her husband Joe for a short visit before heading home last night. However, by the time they finally released Mom from the hospital, and we drove to Mary K's hotel - we couldn't find it, or reach her on her cell. Boohoo! We are hoping to get to see her soon.
Also, while I was gone, Esther had a bit of excitement. She decided to climb up the dresser in her room (a tall dresser), to get to Nathan's light (it's a Lightening McQueen light from the Disney movie "Cars"). She got halfway up, and the entire dresser tipped over right on top of her. It was very scary - but Ryan checked her out completely, and watched her all night - and she came out of it with only a swollen eye, which is gone this morning. Boy, with 5 kids I have never had a dresser fall on one of them before.
Well, time to go and finish getting the kids ready for church. Today is the big Children's Sacrament Meeting Program. Abigail and Lucy have both their parts memorized, and Nathan is excited to sing (and will need a little help with his parts still). Mom will be coming down for it, and then we will be heading over to Cheri's house - for a belated birthday party of Perelyhn. :-) Have a wonderful day. 'Til next time...
Monday, October 10, 2011
Another Trip to San Francisco coming
So we saw Mom's hepatologist, Dr. Merriman, and he reviewed everything, and said that it was a good thing that we got that call, because it shows just how real and close this whole thing is. He gave us some bad news though - he is moving back to Ireland! We are so very sad to lose him. We understand his decision to be close to family while raising his little ones - but we will sorely miss him. He calls Tanya and I "The Sisters". He is so patient and kind with us, professional, yet jokes around and teases us. For example, the last appointment, he opened the door to come into the room, looked at us, opened his eyes wide and walked right back out. Then returned immediately, laughing. So sad for us to lose him. We are already planning on someday taking a trip to Ireland and ending up on his doorstep laughing!
Then we received a call at the end of last week, that the liver transplant team met again to review Mom's case, and decided she needed to do another Chemo Embolization. This is the one where they enter through her major artery in her thigh, and feed a tube up through the veins right to the tumor - then insert these Chemo Beads that act as little "Pac Man" guys, eating the tumor. There are very little side effects compared to other Chemo. Last time, Mom lost some of her hair, but not all of it. It has been growing back quickly, so it will most likely thin out again. So we will be heading to San Francisco again on the 21st of October. This will only be an overnight trip. Unless of course, we get the call that they have a liver again before then! :-)
Per a few requests, I have set up a donation account, and added a donation button on my blog (upper right side), so anyone can donate via Paypal with a credit card, bank account or Paypal account just with a quick click of the button. Please send a quick email, tweet or Facebook page notice for anyone who would want to donate any amount for Mom.
Again, we want to send out a HUGE thank you to everyone who has helped through donations or supporting our fundraisers this far. Everything helps and will add up. Thank you, thank you!!!
Then we received a call at the end of last week, that the liver transplant team met again to review Mom's case, and decided she needed to do another Chemo Embolization. This is the one where they enter through her major artery in her thigh, and feed a tube up through the veins right to the tumor - then insert these Chemo Beads that act as little "Pac Man" guys, eating the tumor. There are very little side effects compared to other Chemo. Last time, Mom lost some of her hair, but not all of it. It has been growing back quickly, so it will most likely thin out again. So we will be heading to San Francisco again on the 21st of October. This will only be an overnight trip. Unless of course, we get the call that they have a liver again before then! :-)
Per a few requests, I have set up a donation account, and added a donation button on my blog (upper right side), so anyone can donate via Paypal with a credit card, bank account or Paypal account just with a quick click of the button. Please send a quick email, tweet or Facebook page notice for anyone who would want to donate any amount for Mom.
Again, we want to send out a HUGE thank you to everyone who has helped through donations or supporting our fundraisers this far. Everything helps and will add up. Thank you, thank you!!!
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