This is a recent email I sent out. So sorry I haven't had a chance to blog more. Someday.....
Hello Friends and Family!
As you all know, Cheri Newberry is on the liver transplant list due to liver disease and cancer. In order to get her active on the list, their financial counselors said that she had to have a minimum of $5,000 to $10,000 that her insurance won’t cover (this is if all goes well). This is required at the time of transplant (no billing and paying later). Mom has no savings, and barely scrapes by on a fixed income, so Tanya and I said we would cover this. However, since that time, we have each spent thousands on Mom’s required trips and procedures. We found ourselves broke and turning to credit cards. We decided we had to fundraise to raise the money she needs before she gets the call.
We had quite an awakening when, Sunday before last, we received a call that they had a liver for Mom. We rushed to San Francisco, got Mom checked in and all her tests done to prepare for the transplant. We were down in the O.R. with our scrubs on, getting ready to put her in the operating room, and received a call that they found carcinoma on one of the donor’s kidneys – so, they were not going to risk using that liver. It was disappointing, but also a relief, as we have not yet raised the money needed. We could get another call any day – and so, time is of the essence with our fundraising.
Thank you sooo much to all who helped donate and shop at our garage sales – they were a huge success, and we made a quarter of our goal.
We have attached an invitation for two fundraisers next week. We ask you to please forward this to everyone you know (friends, family, work and church associates, etc.) – so that we can have as large a turn out as possible! We have two other fundraisers coming up (a Spaghetti Feed and Bowling Night), but those aren’t for another month or two – and we are concerned we may get the call before then.
First, on October 13th (next Thursday) is an Open House to come and get your Christmas shopping done early – or shop for yourself. We have the following consultants that will be here from 10am-2pm and 4pm-8pm:
Pampered Chef – Sarah Milton (Lots of new great things – I was surprised, as I thought I had all I needed)
Partylite – Tanya Haddock (Partylite fundraiser gives an unheard of 50% of the proceeds to Mom)
Park Lane Jewelry – Regina Anderson (Amazing quality, guaranteed – even if your kids break it, you’ll fall in love)
Flower Clips – Emeryl Logan (Buy pre-made, custom made, or make your own – your kids can make them too!)
Where: Debbie’s house: 3490 Santos Circle, Cameron Park.
There will be a door prize drawing for all who come, as well as an amazing basket for raffle (earn 1 ticket per order placed, and/or buy the tickets .50 each or 3 for $1). If you can’t make it, see the flyer for contact information for a phone order.
Second, on October 15th (next Saturday) from 10am-5pm we are doing a car wash at Luke’s Wild West Grill (on Sunrise Blvd. in Citrus Heights). At Lukes Wild West Grill, 7040 Sunrise Blvd., Citrus Heights (corner of Sunrise Blvd and Sungarden Dr. 10:00am-4:00pm
HOW YOU CAN HELP!
1. Send this out to everyone you know, encouraging them to come to one or both fundraisers.
2. Offer to take the Partylite fundraiser kit to your friends, family and work (we have a great reward program to all who do this).
3. Come and work at the car wash, bringing hoses, bucket, sponges, towels, soap (just email and let us know so we can plan accordingly!!)
4. Come to the Party and Car Wash – get shopping done early, and a clean car!!
5. If this doesn’t work for you – we accept cash donations!! You can create your own fundraiser, by “passing the hat” at work, school, friends, Facebook, etc.
With the false alarm, we have gotten desperate (if you can’t tell)! Thanks for all your love, help and support! It takes a village to get a liver transplant!!
Thank you, thank you, thank you!!!
Love,
Cheryl, Tanya and Debbie
Friday, October 7, 2011
Thursday, August 25, 2011
40 is Fabulous!
Well, most people dread the BIG 40 - but I was excited! The way I see it - I earned it! I lived those 40 years, and I'm still kickin'. People tend to think that I am in my late 20's or early 30's (or worse, when I was pregnant they thought I was a teen-mom).
After getting the kids off to school, Esther and I met Tanya and Cheri at Starbucks, for a little breakfast, and then went to the Bali Outlet in Folsom for some bra shopping! What a great experience there! They come and measure you, find out what you are wanting and not wanting in a bra, and bring them to you. They even have a little doorbell inside the dressing room, so you can just ring it when you need more bras, or a different size. Jan was our salesperson, and she was fabulous! I felt so badly for the workers there, looking at the HUGE pile of bras that were a "no". We lost track of time, and so I raced off to my massage with Heidi! She is so amazing, knowledgeable and talented! That was heavenly (except when she was working on some deeper spots - ouch, but good!!).
I had planned on going to the temple after that, but Heidi worked on me for almost two hours (yes - awesome!), so I didn't have enough time to go and get back to the Hulbert's house by 6pm. I had last minute agreed to doing a get together of family and friends (who could make it on such short notice). We had it at the Hulbert's house, and Gary even made the cake! It was amazing - death by chocolate! He uses tons of cocoa, and makes the frosting from scratch! It was wonderful! We also had some delicious L&L Hawaiian BBQ, and all the wonderful munchies that Cheri brought. Some played Pickleball, while the rest of us just visited and enjoyed each other's company.
So, I think most people have a hard time turning 40, because they aren't where they thought they should be in life. But I had that "crisis" at 25! I know, 25 is so young to have that crisis. But I hadn't finished college, served a mission, or had kids yet (all I thought I would have done by then). I was newly married, and feeling like I was way behind on my carefully planned life schedule!
Over the years, I have learned that we are not on our own schedule - but on God's schedule! Proven by the fact that we couldn't get pregnant on fertility treatments, it took 3 years between each child - and then when we thought we were done, I got pregnant on Birth Control!
I have learned that when we let go of our own will, and trust in God's will - we are blessed beyond measure. Proven by the fact that as our finances fell with the economy, and we lost jobs and our home - and I was crying, asking God why! Why us, when we worked so hard, tried to do our best, paid our tithes, and served Him as best we could - why were we losing our home and struggling so hard! God saw the big picture, and that was that only by having a lower income - would we qualify for the insurance that covered Lucy's tests and brain surgery - saving her life! He knew what was on our road ahead, when we couldn't see that far!
I've learned that life is too short to be stressed and grumpy! OK, so I am still a work in progress on this one - but I'm working on it! Don't stress over the little things, or even the big things! Stress doesn't solve anything.
I won't turn this into an "I've learned" list, that we have all seen before - but I have learned so much in the last 40 years, that I look forward to the next 40 years of more learning, growing, and becoming!
So I am proud to accept my "40 year" virtual trophy! So bring it on 50, I'm not scared of you either!!!
After getting the kids off to school, Esther and I met Tanya and Cheri at Starbucks, for a little breakfast, and then went to the Bali Outlet in Folsom for some bra shopping! What a great experience there! They come and measure you, find out what you are wanting and not wanting in a bra, and bring them to you. They even have a little doorbell inside the dressing room, so you can just ring it when you need more bras, or a different size. Jan was our salesperson, and she was fabulous! I felt so badly for the workers there, looking at the HUGE pile of bras that were a "no". We lost track of time, and so I raced off to my massage with Heidi! She is so amazing, knowledgeable and talented! That was heavenly (except when she was working on some deeper spots - ouch, but good!!).
I had planned on going to the temple after that, but Heidi worked on me for almost two hours (yes - awesome!), so I didn't have enough time to go and get back to the Hulbert's house by 6pm. I had last minute agreed to doing a get together of family and friends (who could make it on such short notice). We had it at the Hulbert's house, and Gary even made the cake! It was amazing - death by chocolate! He uses tons of cocoa, and makes the frosting from scratch! It was wonderful! We also had some delicious L&L Hawaiian BBQ, and all the wonderful munchies that Cheri brought. Some played Pickleball, while the rest of us just visited and enjoyed each other's company.
So, I think most people have a hard time turning 40, because they aren't where they thought they should be in life. But I had that "crisis" at 25! I know, 25 is so young to have that crisis. But I hadn't finished college, served a mission, or had kids yet (all I thought I would have done by then). I was newly married, and feeling like I was way behind on my carefully planned life schedule!
Over the years, I have learned that we are not on our own schedule - but on God's schedule! Proven by the fact that we couldn't get pregnant on fertility treatments, it took 3 years between each child - and then when we thought we were done, I got pregnant on Birth Control!
I have learned that when we let go of our own will, and trust in God's will - we are blessed beyond measure. Proven by the fact that as our finances fell with the economy, and we lost jobs and our home - and I was crying, asking God why! Why us, when we worked so hard, tried to do our best, paid our tithes, and served Him as best we could - why were we losing our home and struggling so hard! God saw the big picture, and that was that only by having a lower income - would we qualify for the insurance that covered Lucy's tests and brain surgery - saving her life! He knew what was on our road ahead, when we couldn't see that far!
I've learned that life is too short to be stressed and grumpy! OK, so I am still a work in progress on this one - but I'm working on it! Don't stress over the little things, or even the big things! Stress doesn't solve anything.
I won't turn this into an "I've learned" list, that we have all seen before - but I have learned so much in the last 40 years, that I look forward to the next 40 years of more learning, growing, and becoming!
So I am proud to accept my "40 year" virtual trophy! So bring it on 50, I'm not scared of you either!!!
Mom's update
OK, so I kept waiting for a pause in Mom's status to do an update - but that doesn't look like it is happening soon, so here goes.
They did a biopsy on her liver mass, and now are confirming that it is cancerous. This bumped Mom up on the list, and so we have to be ready at any time to drop and go to San Francisco for a liver. They could call today, or not for another 6 months - so this is the waiting game. Since she isn't as sick as a lot of people, that means she isn't as high on the list - but it also means that she can take an Extended Criteria Donor liver (one from an older donor, overweight donor, or donor who had Hep. B - but the liver is clear from Hep B), whereas a sicker patient higher on the list wouldn't be able to take one of these livers - so she could get a liver any day!
Tanya is coming over today so we can brainstorm how to raise the money for the things that her insurance doesn't cover (their financial clearance person said that we needed to have $5,000 - $10,000 raised). So we are going to get that rolling now.
Mom is doing fairly well since her surgery, except she is still very bloated (they are checking her labs, and had us do some more tests to figure our what is going on with that). She looks like she is 8 months pregnant, and gets "cankles" easily now. They think she is just retaining fluids, but checking to make sure it isn't something more serious (like her liver isn't functioning well anymore). So we will keep you updated as we have more information.
Thanks again for all your thoughts and prayers! We are truly blessed!
They did a biopsy on her liver mass, and now are confirming that it is cancerous. This bumped Mom up on the list, and so we have to be ready at any time to drop and go to San Francisco for a liver. They could call today, or not for another 6 months - so this is the waiting game. Since she isn't as sick as a lot of people, that means she isn't as high on the list - but it also means that she can take an Extended Criteria Donor liver (one from an older donor, overweight donor, or donor who had Hep. B - but the liver is clear from Hep B), whereas a sicker patient higher on the list wouldn't be able to take one of these livers - so she could get a liver any day!
Tanya is coming over today so we can brainstorm how to raise the money for the things that her insurance doesn't cover (their financial clearance person said that we needed to have $5,000 - $10,000 raised). So we are going to get that rolling now.
Mom is doing fairly well since her surgery, except she is still very bloated (they are checking her labs, and had us do some more tests to figure our what is going on with that). She looks like she is 8 months pregnant, and gets "cankles" easily now. They think she is just retaining fluids, but checking to make sure it isn't something more serious (like her liver isn't functioning well anymore). So we will keep you updated as we have more information.
Thanks again for all your thoughts and prayers! We are truly blessed!
Wednesday, August 24, 2011
Best Birthday Gift - EVER!!!!
Thank you, Thank you, Thank you to Loretta and Jannealle Frank!! Ryan and I just got home from the best concert ever!
So, Mom and I were visiting the Franks, and explaining about how tired I was - telling them about my completely crazy, up-all-night, obsessively scheming about the Josh Groban concert. Just the usual "my brain won't shut up" so I lie awake all night kind of nights.
Then the next week, I get a call out of the blue, telling me that they had gone and purchased two tickets to the Josh Groban concert for my birthday, and were on their way to bring them over.
I was shocked, and speechless (yes, I know - impossible to believe that I could be speechless, but I was).
So we get to the concert, and it turns out that they didn't sell as many tickets as planned, so everyone in the second tier was being upgraded to the first tier for free. But wait...that's not all! They ended up giving Ryan and I floor tickets. We were sitting in Row W, Section 3, Seats 3 & 4. But wait...there's more. To make it even better, the people who had Seats 1 & 2 (next to us on the isle), didn't show up - so we slid over to those seats! Awesome, I know!!
Then, when I thought I couldn't be more blessed, we find out that Josh Groban starts his concert on the floor, right behind us - and that we can go stand by that little stage! So there I was - standing right below Josh Groban, up front and personal, just a few feet between us - where I could hear his voice directly. I could see the stubble on his face! It was amazing (the perspective, not the stubble)!
He gives a great concert! He is funny, personable, and his voice....oh my goodness, his voice! He is even better in concert than on his CD's (if that is even possible). Talk about a voice straight from heaven!!
It couldn't be a more perfect evening!! Thanks Emmie for babysitting, thanks to Josh for the amazing concert, and an even bigger thanks to Jannealle and Loretta for making it possible!
BEST NIGHT EVER!!!!!!
So, Mom and I were visiting the Franks, and explaining about how tired I was - telling them about my completely crazy, up-all-night, obsessively scheming about the Josh Groban concert. Just the usual "my brain won't shut up" so I lie awake all night kind of nights.
Then the next week, I get a call out of the blue, telling me that they had gone and purchased two tickets to the Josh Groban concert for my birthday, and were on their way to bring them over.
I was shocked, and speechless (yes, I know - impossible to believe that I could be speechless, but I was).
So we get to the concert, and it turns out that they didn't sell as many tickets as planned, so everyone in the second tier was being upgraded to the first tier for free. But wait...that's not all! They ended up giving Ryan and I floor tickets. We were sitting in Row W, Section 3, Seats 3 & 4. But wait...there's more. To make it even better, the people who had Seats 1 & 2 (next to us on the isle), didn't show up - so we slid over to those seats! Awesome, I know!!
Then, when I thought I couldn't be more blessed, we find out that Josh Groban starts his concert on the floor, right behind us - and that we can go stand by that little stage! So there I was - standing right below Josh Groban, up front and personal, just a few feet between us - where I could hear his voice directly. I could see the stubble on his face! It was amazing (the perspective, not the stubble)!
He gives a great concert! He is funny, personable, and his voice....oh my goodness, his voice! He is even better in concert than on his CD's (if that is even possible). Talk about a voice straight from heaven!!
It couldn't be a more perfect evening!! Thanks Emmie for babysitting, thanks to Josh for the amazing concert, and an even bigger thanks to Jannealle and Loretta for making it possible!
BEST NIGHT EVER!!!!!!
Saturday, August 13, 2011
Mom's surgey went well
Just a quick update on the past few days with Mom. Thursday was her birthday - and we celebrated by going to San Francisco to have blood work done, and to see the orthopedic surgeon for her hip (fun, fun - we really know how to party!!). Tanya is up in Oregon on vacation, and my van ended up in the shop (still there) - so the trip consisted of Cheri (my sister), Nathan, Esther, Mom and me. We left at o'dark hundred after she opened her present from me. Then her present from the surgeon was that her hip was completely healed, and she did not need a hip replacement. Also, she did not need anything done with her knee, the screws were fine, and the swelling and pain were from arthritis. As far has her leg pain from her hip - she just needs to push it. Eventually it will hurt less and less, the more she pushes it. After we were done with that, we did go to Tartine Bakery - which was featured on Food Network's "The Best Thing I Ever Ate", to get their chocolate croissants. I also got Mom a "birthday pie" - her favorite, coconut cream - and a coconut macaroon! We covered the sweet tooth all around! Then we went to her favorite restaurant, Red Lobster, for linner (no typo - lunch and dinner combined - linner). :-)
When she arrived home, she was surprised to find beautiful flowers and gifts from Megan Dold and Cindie Blodgett.
Then the next day, Friday, Mom and I went back to San Francisco for her Microwave Ablation surgery on the mass in her liver. Mom keeps telling everyone that it is cancer, but it has not been diagnosed as cancer. They won't know that, unless they do a biopsy, which they haven't done. The liver doctor is just treating it as if it is cancer, as it is an active mass in her liver, and we need to get her a transplant. Unfortunately Mom's liver disease causes confusion and memory loss, so Mom tends to get her information confused sometimes. You can always ask Tanya or me to get the exact details.
The surgery went very well. They were able to do it lapriscopically as planned, and she did very well. We won't know how successful it was for another 6 weeks - when they repeat the scan to see how the mass looks. I stayed with her until she was in a room and sleeping well, then I got permission from her transplant coordinator to come home for the weekend, and drive back to pick her up on Sunday or Monday when she is ready - with the nurses having my phone numbers to call if there was any change or information that needed to be given.
I called today, and she is dong great. Of course the nurses just love her. She will be up walking around - and they are moving her to a regular room around 1 pm - so she will be able to get calls then.
As far as upcoming items - they want to try some cortisone shots in her knee to see if that helps with the arthritic pain. She needs to be walking every day, and pushing through the pain to get past the pain in her leg. They will be doing an endoscopy and colonoscopy in about 4 weeks as part of the liver transplant screening. And we will have continued visits with her doctors, blood tests and support group / training meetings. Hopefully with an extended criteria donor, she could have a new liver in 5-7months, before the liver disease gets too bad.
We are just grateful to be so blessed with such wonderful doctors, nurses and hospital staff at CPMC - just as Lucy did at UC Davis. We are truly blessed!
When she arrived home, she was surprised to find beautiful flowers and gifts from Megan Dold and Cindie Blodgett.
Then the next day, Friday, Mom and I went back to San Francisco for her Microwave Ablation surgery on the mass in her liver. Mom keeps telling everyone that it is cancer, but it has not been diagnosed as cancer. They won't know that, unless they do a biopsy, which they haven't done. The liver doctor is just treating it as if it is cancer, as it is an active mass in her liver, and we need to get her a transplant. Unfortunately Mom's liver disease causes confusion and memory loss, so Mom tends to get her information confused sometimes. You can always ask Tanya or me to get the exact details.
The surgery went very well. They were able to do it lapriscopically as planned, and she did very well. We won't know how successful it was for another 6 weeks - when they repeat the scan to see how the mass looks. I stayed with her until she was in a room and sleeping well, then I got permission from her transplant coordinator to come home for the weekend, and drive back to pick her up on Sunday or Monday when she is ready - with the nurses having my phone numbers to call if there was any change or information that needed to be given.
I called today, and she is dong great. Of course the nurses just love her. She will be up walking around - and they are moving her to a regular room around 1 pm - so she will be able to get calls then.
As far as upcoming items - they want to try some cortisone shots in her knee to see if that helps with the arthritic pain. She needs to be walking every day, and pushing through the pain to get past the pain in her leg. They will be doing an endoscopy and colonoscopy in about 4 weeks as part of the liver transplant screening. And we will have continued visits with her doctors, blood tests and support group / training meetings. Hopefully with an extended criteria donor, she could have a new liver in 5-7months, before the liver disease gets too bad.
We are just grateful to be so blessed with such wonderful doctors, nurses and hospital staff at CPMC - just as Lucy did at UC Davis. We are truly blessed!
Sunday, July 31, 2011
How to turn off the music on my blog
Ryan just told me there are some who don't like to hear the music on my blog (I do admit, I need to update it). Some have said they love it, and others do not.
If you do not - you just scroll down to the bottom of the page, and hit the pause button on the player, and it will stop the music while you are reading.
Hope this helps!! :-)
If you do not - you just scroll down to the bottom of the page, and hit the pause button on the player, and it will stop the music while you are reading.
Hope this helps!! :-)
OK! OK! Here's another update!!
OK, after much harassment (you know who you are, and there are more than one of you!) - here is another post. I do have to agree that it is long overdue. Time is just flying by, and I don't know where it is going! I can't wait for life to get boring. School starts for the kids (4 out of 5) on August 10th, and so it will be just Esther and I all day. I am hoping that I can have some quality time with Esther, since I have been gone so much for her whole life (with doctors, surgeries and such for Mom, Lucy and Emmie), as well as have some time to get things done around the house (organizing, cleaning, etc). Plus there will still be more doctors, procedures and such for Mom.
Lucy is doing wonderfully! She turns 10 tomorrow - and has been counting down the days for the past three months. I wish I was one of those Mom's who did a "dedication blog" to my children on their birthdays. Maybe someday. She only has therapy 2x a month, and you would never even know she had brain surgery. Her hair is growing in nicely, and you either don't notice, or people think she just cut her own hair. She is still an amazing, sharing, brilliant, beautiful, funny girl.
Emmie is, at this moment, on her way home from Australia - and I pick her up at the airport tomorrow at 12:20pm. I can't wait to see her pictures and hear all about it. She has emailed and called periodically, but our visits and emails were short, because she had to pay for the Internet, and was borrowing a cell phone to call us. She will be doing a formal presentation to the Lion's Club in a few weeks, and we will be having an open house for friends, family and sponsors to come and view her pictures and hear all about her trip.
Mom - where do I start. OK - so she is on the transplant list, and we (Mom, Tanya and I) have to do everything in San Francisco. We have required classes and support groups, as well as doctors appointments and procedure for Mom. So if Mom's tumor in her liver grows beyond a 5, or spreads outside the liver, she will not be eligible for a liver transplant. They tried to do a Chemo Embolization several months ago, which did kill some of the tumor, but not enough. It did make a lot of Mom's hair fall out, thinning it out, but the part that didn't was her "newer growth" (as our hair is constantly shedding and replenishing), which was shorter, so she cut the "crypt keeper" long strands (as she called it) that were left here and there, and now has a very cute short curly style. The procedure wasn't successful enough to make them happy or to repeat it. So now she will be going in for a more invasive procedure called Microwave Embolization, where they try to do it lapriscopically if they can, and if not, they will open her up. This is where they go directly into the tumor, and "cook" it to try to kill it. She will be in the hospital for a minimum of 3 days after that procedure. They can't get rid of the cancer, but are trying to keep it at bay and buy time until Mom can get a new liver. They are also now advising her to take an "Extended Criteria Doner" liver, so that she can get a liver sooner. The Extended Criteria Donors are people that maybe had Hep B, but the liver is clear, or they are older or have a fatty liver. There are a shortage of livers, and some people die while waiting. So they think she should consider this option, as they are still good livers, and would work fine in her, since she is not at the late stages of liver disease - when it wouldn't work unless it was a "prime" liver, but is racing time with the tumor. There are a lot more livers available that fall into the Extended Criteria category - so her chances of getting a liver before her tumor gets to big or spreads is increased. To make it more interesting, when she went in for her final x-ray of her hip, the doctor said it actually hadn't healed, and so she has to have a partial hip replacement. This can't be scheduled until at least 4 weeks after her tumor surgery. Then after her hip replacement, she has to wait a bit, and go back to San Francisco for a colonoscopy and endoscopy before she can actually get a liver.
It has been quite a bit financially on Tanya and I (since Mom doesn't have any money, Tanya and I split it, pay for everything (food, gas, hotels, etc.) for all the trips to San Francisco). The tough part is when Mom actually gets her liver, because we are required to have saved $5,000 - $7,000 to cover the extra cost. During the surgery, we as her support people, are required to stay in San Francisco, and be at her bedside from 8-5 for training. Also, after Mom is released, we are required to stay in an apartment with Mom in San Francisco 24/7 for another 4-6 weeks (depending on how she is doing). Looks like fundraising isn't in the past for me, but rather has just switched from Emmie to Mom.
Mom is hanging in there though. She doesn't like the required diet, fatigue, confusion, memory loss - or Tanya and I having to baby her, but knows it is a necessity. We also have to keep tabs on her - as the liver disease can cause her to go into a coma very easily. So she calls and checks in every 4 hours - and at night calls when she wakes up throughout the night. Also, she has to make sure to answer the phone whenever Tanya or I call to check on her (which isn't fun for her, since the liver disease makes her sleeping habits crazy - so she may be up all night, and just getting to sleep during the day, and we are calling her). But we told her if she is getting rest, she needs to let the machine answer for everyone else calling just to chat. So don't worry if you call, and she doesn't answer. Tanya and I are keeping very close tabs on her. Also, please don't be offended if you call her, and she doesn't answer - she may just be getting to sleep, no matter what time of day or night it may be. Also, her computer died, so she is without email right now. You can send mail to her PO Box - and I check that for her periodically. She (and we) appreciate all your love and prayers in her behalf.
Just like with Lucy, I will blog if anything significant happens, or will blog the mundane if I have time....ha ha ha...did I just say I might have time....I'm funny! ;-)
Thank you all for being so loving, kind, helpful and patient with me and my crazy family year! Have a wonderful week!! :-)
Lucy is doing wonderfully! She turns 10 tomorrow - and has been counting down the days for the past three months. I wish I was one of those Mom's who did a "dedication blog" to my children on their birthdays. Maybe someday. She only has therapy 2x a month, and you would never even know she had brain surgery. Her hair is growing in nicely, and you either don't notice, or people think she just cut her own hair. She is still an amazing, sharing, brilliant, beautiful, funny girl.
Emmie is, at this moment, on her way home from Australia - and I pick her up at the airport tomorrow at 12:20pm. I can't wait to see her pictures and hear all about it. She has emailed and called periodically, but our visits and emails were short, because she had to pay for the Internet, and was borrowing a cell phone to call us. She will be doing a formal presentation to the Lion's Club in a few weeks, and we will be having an open house for friends, family and sponsors to come and view her pictures and hear all about her trip.
Mom - where do I start. OK - so she is on the transplant list, and we (Mom, Tanya and I) have to do everything in San Francisco. We have required classes and support groups, as well as doctors appointments and procedure for Mom. So if Mom's tumor in her liver grows beyond a 5, or spreads outside the liver, she will not be eligible for a liver transplant. They tried to do a Chemo Embolization several months ago, which did kill some of the tumor, but not enough. It did make a lot of Mom's hair fall out, thinning it out, but the part that didn't was her "newer growth" (as our hair is constantly shedding and replenishing), which was shorter, so she cut the "crypt keeper" long strands (as she called it) that were left here and there, and now has a very cute short curly style. The procedure wasn't successful enough to make them happy or to repeat it. So now she will be going in for a more invasive procedure called Microwave Embolization, where they try to do it lapriscopically if they can, and if not, they will open her up. This is where they go directly into the tumor, and "cook" it to try to kill it. She will be in the hospital for a minimum of 3 days after that procedure. They can't get rid of the cancer, but are trying to keep it at bay and buy time until Mom can get a new liver. They are also now advising her to take an "Extended Criteria Doner" liver, so that she can get a liver sooner. The Extended Criteria Donors are people that maybe had Hep B, but the liver is clear, or they are older or have a fatty liver. There are a shortage of livers, and some people die while waiting. So they think she should consider this option, as they are still good livers, and would work fine in her, since she is not at the late stages of liver disease - when it wouldn't work unless it was a "prime" liver, but is racing time with the tumor. There are a lot more livers available that fall into the Extended Criteria category - so her chances of getting a liver before her tumor gets to big or spreads is increased. To make it more interesting, when she went in for her final x-ray of her hip, the doctor said it actually hadn't healed, and so she has to have a partial hip replacement. This can't be scheduled until at least 4 weeks after her tumor surgery. Then after her hip replacement, she has to wait a bit, and go back to San Francisco for a colonoscopy and endoscopy before she can actually get a liver.
It has been quite a bit financially on Tanya and I (since Mom doesn't have any money, Tanya and I split it, pay for everything (food, gas, hotels, etc.) for all the trips to San Francisco). The tough part is when Mom actually gets her liver, because we are required to have saved $5,000 - $7,000 to cover the extra cost. During the surgery, we as her support people, are required to stay in San Francisco, and be at her bedside from 8-5 for training. Also, after Mom is released, we are required to stay in an apartment with Mom in San Francisco 24/7 for another 4-6 weeks (depending on how she is doing). Looks like fundraising isn't in the past for me, but rather has just switched from Emmie to Mom.
Mom is hanging in there though. She doesn't like the required diet, fatigue, confusion, memory loss - or Tanya and I having to baby her, but knows it is a necessity. We also have to keep tabs on her - as the liver disease can cause her to go into a coma very easily. So she calls and checks in every 4 hours - and at night calls when she wakes up throughout the night. Also, she has to make sure to answer the phone whenever Tanya or I call to check on her (which isn't fun for her, since the liver disease makes her sleeping habits crazy - so she may be up all night, and just getting to sleep during the day, and we are calling her). But we told her if she is getting rest, she needs to let the machine answer for everyone else calling just to chat. So don't worry if you call, and she doesn't answer. Tanya and I are keeping very close tabs on her. Also, please don't be offended if you call her, and she doesn't answer - she may just be getting to sleep, no matter what time of day or night it may be. Also, her computer died, so she is without email right now. You can send mail to her PO Box - and I check that for her periodically. She (and we) appreciate all your love and prayers in her behalf.
Just like with Lucy, I will blog if anything significant happens, or will blog the mundane if I have time....ha ha ha...did I just say I might have time....I'm funny! ;-)
Thank you all for being so loving, kind, helpful and patient with me and my crazy family year! Have a wonderful week!! :-)
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