Thanks so much to all of you who've shown such great love and support during this difficult time. We appreciate it so much! We felt that the services turned out very nicely and we know mom was pleased. We love her and miss her!

For those of you who would like to keep updated on our family, here are some blog addresses: :)

hainiandkrystal.blogspot.com

lukeandmakayle.blogspot.com

almost4forus.blogspot.com

Change of address

So sorry - we just discovered that the address for the church for the viewing and funeral on Monday is wrong.

Here is the correct address:
1867 Washington Fields Road, Washington, UT 84780

For those of you who are familiar with the area, there are 2 churches right next to each other on that road. It is the south one.

Please help us spread the word to get everyone to the right chapel.

Funeral Arrangements

Just wanted to let you all know the information for the funeral arrangements.

The funeral will be held Monday, May 18, 2009, at 10:00 a.m. at the Washington Fields 11th Ward Chapel, 115 W. 2000 S., Washington, Utah.

A viewing will be held on Sunday evening (May 17) from 6 to 8 p.m. at the Spilsbury Mortuary, 110 S. Bluff Street, St. George, Utah. Another viewing will be held on Monday morning (May 18), from 9 to 10 a.m. at the LDS Chapel at 115 W. 2000 S., Washington, Utah.

She will be buried in the Kingston Utah Cemetery on Monday afternoon.

Her obituary will appear in the St. George Spectrum Friday, Saturday and Sunday, and will also be published in the Richfield Reaper and Garfield County News.

We are encouraging expressions of love and sympathy to be made through donations to the Huntsman Cancer Institute, 801-584-5800, or Primary Children's Medical Center, 801-662-5959, or donate online, in her honor.

Friends and family may also offer their condolences at www.spilsburymortuary.com by clicking on the dove.

Home Sweet Home (for real this time)

Once again, these posts are not easy to make. It's been an emotional week (or 6 months rather) for us. This time I'm writing to let you all know that our beloved Phyllis has passed away. She joined her father and other loved ones in Heavenly Father's presence at 8:13 p.m. this evening. We love her dearly and she will be greatly missed. We find comfort in the Great Plan of Salvation and knowing that we will see her again and be with her forever. We are so grateful for her love and wonderful example. She truly is an angel and we know she'll be doing some great work on the other side.

Funeral services are currently planned for Monday, with a viewing Sunday evening. We'll post the location and time in a future post.

Thanks again for all of your support and love. We've felt your prayers, and it has touched us to see how much Phyllis is loved.

We're home

These posts aren't easy to make these days....

Just wanted to let everyone know that we've finally brought mom home. It's good to have her home, we just wish it were in better circumstances.

All of us girls are here to help take care of her, and she is receiving great care from Rocky Mountain Home Care and Hospice. We're just doing all we can to keep her as comfortable as we can as she prepares to go to her home above.

An End in Sight

When I made this blog I put Krystal in charge of the updates because I'm just plain bad at it! But I have been asked to update everyone on the PET scan results and can't say that I'm happy to do so. I don't know the best way to tell it so I guess I'll just say it how it is.

Our parents received the news Tuesday evening that the cancer has now spread to the bones (pelvic/hip, upper back and ribs) and liver. The nodules on her lungs have gotten bigger and same with the tumors in her leg and lymph nodes. They have decided not to go forward with chemo and to just let the cancer run its course. They are looking into taking her home but will probably stay where they're at until the insurance kicks them out. The doctor didn't dare say how long she has but said it could be anywhere from weeks to months.

Mom's been in quite a bit more pain lately (which is now explainable) and they've been switching her pain meds around to try and control it but not totally snow her. They haven't gotten it figured out yet so she's pretty sleepy and out of it a lot so they are asking for no visitors at this time. We know there are lots of you out there that would like to stop by and share your love and we appreciate it very much. We want you to know how grateful we are for all your love and concern, it sure makes this journey easier.

I know that our Heavenly Father is in control and know he's watching over us and will uphold us through our trials. And I am grateful for the knowledge I have that we will all be together again someday.

Home Sweet Home. Sort of.

Oh man. Again it has been a really long time since I've posted an update! Sorry! My excuse this time is that I went to California this weekend to watch Haini play with BYU for the Rugby National Championship. And they won! It was awesome!!

So anyways, I know you're all wondering about my mom and probably all calling my dad, so I better write an update. She's now at Coral Desert Rehabilitation in St. George! I know I'd be happy if I could look out my window and see those beautiful red rocks! :) From what I hear, so far it's been going good. Good to have some good ol' Southern Utah care. And food.

The insurance wouldn't approve the PET CT scan, so the appointment with her oncologist at Huntsman was cancelled last week, so we don't have any new information. I think the plan now is for her to do the scan there in St. George (of course the insurance approved it AFTER she'd already been moved) and continue to meet with her oncologist there to determine when chemo can be resumed. And she's still getting a lot of physical therapy and just working on getting that movement back. Still not a whole lot of movement in the left leg. From what I hear she's pretty tired, and they're still working on getting her pain under control, so they've been trying to get her pain meds regulated, which has also made her tired and groggy. So, we know you all love her and want to support her, but we just ask you to try and limit visits, or at least check in with my dad before going to make sure it's a good time.

Thanks again for all your love and support. Keep sending those prayers upward! :)

Oopsy

Oopsy. It's been awhile since I've posted an update. Sorry about that. Must be something about having to plan a wedding in 2 months. ;)

So, mom had radiation on Tuesday. They pinned (yes pinned. actual pins through her skin (but not all the way to the skull)) a 3 pound "halo" to her head and then did 5 direct shots of radiation into the spot where the tumor was. They said that it was possible for swelling to occur around the pin sites (sometimes so bad the eyes would be swollen shut!), but she has had hardly any swelling! They also warned us that it could cause swelling in the brain and she might experience some loss of movement again. She was fine and had all movement right after the radiation Tuesday, but today was a little weaker in her right side than she has been. She still has no movement in the left leg. Although we were talking about it tonight that she can feel pain in her leg, knows when you're tickling her feet, etc. but just has no movement. Come on brain, work!

So next week she'll have a full PET CT scan of her body to see how the rest of her body is doing as far as the cancer goes, and we'll meet with her oncologist at Huntsman next week as well. Then maybe she'll get to move to a facility in St. George. We'll see!

Here's a picture of the halo:

Can I post a little something about me?

So I don't have a blog......So I hope it's okay with all of you if I borrow this blog to post some exciting news! I'm engaged! :) His name is Sosaia Haini Leaaetoa and we've been dating for 2 years now. We're getting married on June 20th in the Salt Lake Temple. Exciting!
Here's some pictures of us:




And at the Provo temple the night he proposed

Time for another update I suppose....

Hi again everyone. Does anyone else think someone besides me should write a few of these posts? ;)
Anyways, to give you all another update, mom is now in Aspen Ridge Transitional Rehab. We've heard good things about this center, and hope that it is a good stay for her. She continues to do rehab, and is slowly getting more strength back. My dad said she moved her left knee yesterday! She also continues to be very tired and sleeps a lot. Or "plays possum" as my dad puts it - she'll lay there with her eyes closed, and we can't tell if she's sleeping or not. :) It is good to see her sleep since she hasn't slept much since all of this started.

I can't remember if I mentioned it before, but she was scheduled to have radiation to the brain today. However, she had an appointment yesterday with Dr. Hazard, a radiation oncologist from Huntsman, and it was determined that she was not in good enough condition to do the radiation treatment this week, so it has been postponed until next week.

She has an appointment with her principle oncologist, Dr. Chen, at Huntsman tomorrow, and we'll probably have some more information after that. It's been over a month since her last chemo treatment, so we're curious as to what needs to happen there.

Your continued prayers are needed as we all continue this journey......Thanks so much for your love and support!

Muchas gracias!!

Oh yes, and a great big thank you to all of the staff and teachers and Pine View Middle School for the very nice card you sent. We all really appreciate your love and support and well wishes! I can tell my mom is loved. Thank you!

My mom also said to say thanks to EVERYBODY! For the cards, and flowers, and thoughts, and prayers, and support, and everything!! THANK YOU!!

Moving

Yep, it's time for an update. So, my mom will be moving to a skilled nursing home tomorrow. Insurance will no longer cover this "accute care" facility, but has approved a nursing home stay. So, she will be moving to Aspen Ridge here in Salt Lake (Murray I guess?). My dad went and checked it out yesterday and says it's pretty fancy. The dining room has little round tables with tablecloths and crystal glasses. ;) The reception desk was marble. The therapy room was carpeted. The rooms are nice - twice as big as the one she's in. And maybe with it's own temperature control unit - unlike the 75 degree room we've been in for the past couple of weeks. ;) Refrigerator, microwave, TV, etc. Yay!! Hopefully it's as good as it sounds. We think it will be a positive move for her. She's so ready to get out of this dang hospital! We've heard good reviews from the staff here about Aspen Ridge, so we feel good about it.

I was at work all day yesterday, but my dad said there were some good improvements. She's been real sleepy this week. Starting to sleep better at night, but also sleepy during the day. But yesterday my dad said that she actually got a little bit of strength in the thigh of her left leg yesterday. She still can't move it on her own, but is gradually getting more strength in her back, and still has strength in her arms and right leg.

On another note, she is scheduled to have radiation on Tuesday. From reading the information about it, it sounds pretty intense and could have some side effects that would put her right back to where she was after surgery. So we've been concerned about going forward with the radiation until she has gotten some of her strength back. My dad talked to the Doctor's office this morning, and a consultation with the radiation doctor is scheduled for Monday morning. It will be a chance for the doctor to evaluate and see if she feels like my mom is in good enough condition to go forward with the radiation. So by Monday we'll know about that. She is also scheduled to see Dr. Chen - her oncologist at Huntsman - on Wednesday, to see about the rest of her cancer treatment.

I think that's all!!

Not much is new

It's been awhile since I've written an update, so I know you're all wondering. I feel like there's not a whole lot to report. It seems like things are pretty much the same since the last time I wrote. She still has no movement in her left leg. But tonight she said she had a weird pain in her knee cap. So she could feel pain there - maybe that means it's coming back??? But as I massaged it for her she said, "Can you tell I'm trying to move my leg?" So, I guess she thinks about it, tells the leg to move, but nothing happens. I'm sure you can all imagine how frustrating that must be! However, she is getting more strength in her back, and the physical therapists continue to work with her, so she's getting better at being able to balance and hold herself up when she's sitting on the edge of the bed. They also continue to do stands with her everyday to get her standing up for at least a little bit, and she also spends at least a few hours sitting up in the wheelchair each day. Just keep praying for her!!

Another update

So I guess it's been too long since the last update since my dad has gotten a few calls today wondering what's going on. I warned you all - I'm not an experienced blogger. It's not quite part of my daily routine yet. :)

But once again, I want to thank you all for your love and support and prayers. It's been so neat to see how many people love my mom and are cheering for her.

Before I forget, my dad asked me to remind everyone that my mom has allergies so not to send flowers - they end up making her pretty congested. But we've loved the flowers she's been sent so far! Thank you! They were beautiful! They brightened the room and were enjoyed by many - I even took them to church and used them in Relief Society and Sacrament meeting, and they got so many comments! So, if you want, you can keep sending flowers, but to me! ;) And anything else I'm sure will be appreciated by my mom.

Okay, so as far as an update. I can't remember what I've posted already, so bear with me if some of this is old news. She continues to progress little by little each day. Her right arm is very strong, and her left arm is getting there. Tonight she gave me a demonstration of what she can do. She lifted her left arm all the way up, and even used it to pull herself while on her side. That's impressive! She's also gotten a lot more movement in her right leg - she can lift it up off the bed and can also bend at the knee and bring it up. In physical therapy today they stood her up for a little bit. She's also been spending a few hours each day sitting up on her own in the wheelchair. She's looking a little bit healthier and stronger each day.

So this is my favorite story of the day. She had a rough night last night and probably didn't sleep for more than a couple of hours at a time. That's actually how it's been for awhile now. But anyways, this morning, they finally gave her OxyContin for her pain, and it made her pretty sleepy. My dad said she slept pretty much all day. But the best part......the physical therapist came and got her and took her down to the physical therapy room this morning . After an hour or so, my dad went to check on her in there, and found her asleep on the flat physical therapy bed. The physical therapist said she was so tired she just let her sleep. But she couldn't count that as physical therapy!

Yes, she has her hair. No, she won't let me post a picture.

We were just thinking - everyone we talk to asks if they had to shave her head for the surgery. And, nope, they didn't! They just made a part in her hair, and shaved off a strip less than a half an inch wide where they made the incision. We're trying to convince her to let us post a picture.....we'll see...... :)

She let us! :)

Movin' right along

So, I didn't see mom yesterday, and in just one day there were so many improvements! When I came in today she said, "Have you seen what I can do with my left arm?" and she lifted it right up! She can touch her nose with her left arm! Her movement is getting better everyday! Her right arm pretty much has full movement. She's able to eat all on her own. She's still wiggling her toes and can move her right leg up and down just a little bit. Also, her movement in her neck and head has gotten much better. She got the staples out of the incision on her head yesterday and was able to have a shower today. She was worried about being able to hold her head up that long while sitting in the shower chair, but she did it! Without any help! We're so proud of her.

The move to Rehab has been good. The room is bright, with a large window and nice view out across the Salt Lake Valley. :) It's also quieter and the nurses don't bug her so much anymore. We're hoping she'll be able to rest a little more here. She doesn't have all those IV's in her anymore - just lots of bruises - but no more blood checks every few hours either, so maybe those bruises will be able to heal. Along with the rest of her! She's looking a little better everyday! Just keep cheering for her and praying for her!

THANK YOU!!!!

My mom wanted me to put a big "Thank You" on the blog to thank you all for all of your love and prayers and support.
So,

Thank You

from the bottom of our hearts. It has really meant a lot to her and all of us!
We love you.

Moved to Rehab

Just a quick update today: Mom was moved to Rehab today at the Salt Lake Regional Hospital. I haven't been there yet, but my dad said he feels like the move is a really good thing - the room is quieter, more comfortable, more pleasant, more serene, etc. etc. There she'll work more extensively with physical therapists and according to how she feels can do a maximum of 3 hours of physical therapy each day, and the goal is to get her to the point where she can walk out of there!

Our Family

First Update

Hello. Krystal here. MaKayle gave me the assignment of writing the first blog post. And just FYI, this will be my first blog post ever! Being the only one not married and without kids, I often don't have very exciting things to share ;), so I don't have a blog!

I'd like to start by telling you all how grateful we are for your love, concern, and support. We know that your thoughts and prayers are making a difference. We always share with mom your well wishes and let her know that you're thinking of her. I know it makes a big difference to her, and she often gets teary eyed as I tell her how many people love her and are cheering for her.

So the road to recovery so far has been a little longer and more difficult than we expected. She has been unable to move her legs, her left arm and her head. Dr. Jensen, who performed the surgery, told us it would be a day in the ICU and then 3 or 4 days in the hospital, and she'd probably be able to go home. Tomorrow marks a week since the surgery and we are still in the hospital. Mom has been such a trooper and is hanging in there, despite not being able to rest very well. For those of you who've spent any time in a hospital, you know what that's like - with blood draws, and vital checks, and med schedules, being un-interrupted for more than 2 or 3 hours is unheard of!

Anyways, I'll get to what you all want to know - how's she doing and where do we go from here? Dr. Jensen said surgery went well, and he was able to remove all of the tumor. Post surgery she's had 2 MRI's of the head, and one of the spine, and everything looks fine. Except for normal swelling, things look good. Dr. Jensen said the loss of movement in her legs was normal due to the area of the brain he was working with and would be temporary. The loss of movement in her left arm and head and neck were unexpected - that's why they've done an extra MRI on the head and the spine to make sure everything's okay. So they've been a little "baffled." Dr. Jensen explained to us that in order to get in to the tumor, he had to pry the two halves of the brain apart, and one of the areas that may have been affected was the secondary motor movement (or something like that :)) area, which basically tells your muscles what to do to move. So probably, the brain just needs time to heal.

Another complication is that her sodium level dropped drastically, which caused weakness (probably contributed to the loss of movement in her arms), a seizure and headaches. Again, doctors said that sodium loss with neurosurgery patients is normal, but not that drastic. We always knew mom was special, but all these rare medical things just confirm it! One in a million, she is. To fix the sodium problem, they have limited her water intake (and we know how much she loves her water!), give her salt pills, and an IV drip of sodium. They are closely monitoring her sodium level, and it was back up, but had dropped again slightly by last night.

So she won't be discharged from the hospital until her sodium level is under control, and the plan we've heard is that she will move to Rehab to continue working to get the movement back. She gets a little better everyday! We're seeing more movement in her left hand and arm, neck and head, and she can wiggle her toes. She has great physical therapists working with her, and she's doing a great job trying to get that movement back.

The biopsy of the tumor determined that the tumor was malignant - with the same types of cells as the tumor they removed in her foot. Her case is being presented to the "tumor board" today, and most likely she'll have to do radiation. We're also waiting for the word on when she'll be able to do chemo again.

This was a long update! Hopefully they'll be shorter in the future! Thanks again for all of your love and support, and keep praying for her!