October 30th Happy almost Halloween

"the all-loving God shapes our individual growing and sanctifying experiences- and then sees us through them...."

What a fantastic day!! Sofie has been alert and high functioning. And incidentally, prayers have mercifully blessed us both with good health, no flu-like sympoms through this whole thing so far. The staff here dressed in costume and came around to our room all day trick or treating, except the reverse, they offered candy and lots of it. Also hundreds of home-made pumpkin shaped sugar cookies given away all day today. It is very festive! Today Grandma and Grandpa Turner came to visit and as always, Daddy G arrived at 5 and stayed all eve. His arrival is her favorite part of the day. Allowed me a nice dinner at Little America with my folks. In talking with my friend, Shelley Cleveland, whose daughter also has cancer, the drug Sofie is on this week was a bad one for her. Thats why the docs dont say definitively how the drug will effect patients because it varies. Maybe its prayers but this methotrexate is being good to Sofie. Best day so far!! Love to you... Bonnie

October 29th

Had a rough morning. Woke at 5:30 for 7 am flight to SL. Sofie was sick. She threw up at security at Jax airport, and again on the plane. Weird because its the first time shes fully lost her cookies so we didnt see it coming. Gave her some meds for nausea and she became very happy. Used wheelchair for transport throughout both airports and that was a lifesaver. By the time we checked in, she was feeling so good and happy. We are now comfortable in our little room. They started her iv at 11:30 but it takes many hours before chemo actually starts because they have to increase her fluids to a certian point and it just takes time. This is the best time of our stay in the hospital because we just enjoy eachothers company. Sofie eats lots and lots of steak! Never did before chemo. The recommended diet for chemo patients is high fat, high protein so thats perfect! Sofie is comfortably watching "House" episodes waiting for her sleepover to arrived. Tonight it's Shantelle Vu, dear friend from Utah, 17 yrs old, darling friend. Thats all for now! Bonnie
PS visitors today, Grandpa Turner (my dad) and Daddy G. Jason Celaya is coming tonight! Brookie on Saturday!

October 28

..... the Lord at times will strip away from us our "comfort blankets" and expose our weaknesses and inadequacies so as to "force us to our knees"....

Lead kindly light, amid the encircling doom;
Lead thou me on!
The night is dark, and I am far from home;
Lead thou me on!
Keep thou my feet; I do not ask thee the distant scene
One step enough for me.

October 27

We are in Jackson for 2 days. Sof and I will leave at 7 am on Thursday morning and check back into the hospital at noon on Thursday. This chemo treatment will be another just like the one we had so we will be in the hospital for another 5 days. Sof ate well yesterday, came home and caught up with "So You Think You Can Dance" episodes. Today it's time for lots of homework!!
Bonnie

October 26th

It's 11 am and Sofie is sleeping in her hospital bed. She has been released so when she wakes up, we are free to go. Im curious to see how much sleep/rest she will need today. We will take her to Rondald mcDondald house or hotel when we leave here. Trying to fly back to Jax tonight but will depend on Sofie's strength. Then we will check back in at Primarys on Thursday for another treatment (same one).

Sofie and Jeff's new hairdoos

October 24th

Still getting info about twitter. Apparently you can read her twitters without creating an account. She just wont know whose following unless you officailly become a follower. Also you cant message back. But its an option to just to go to twitter.com and put SofiaHuntington in search bar and you can unofficially follow!

October 23

What a big difference between the cisplatin and metheltrexate for Sofie. She slept a lot but when she was awake, she was awake. She has had some memory problems but she did so much more such as sitting up, eating, talking, brushing. Its been wonderful!! Also her sense of humor is ever present today. Tomorrow morn Brooke has to go home. Boo hoo. But it's my understanding she has some Jackson friends coming down tomorrow... she will really enjoy that. She is becoming very unabashed with her head, unveiling herself often now. She makes bald look fabulous. Getting late now... good night! Bonnie
PS I think she has about 18 followers on twitter now!

Instructions on how to become a twitter follower of Sofie!!

Yea!! Im becoming a techno smart person. No worries anymore, you dont have to figure it out on your own!! Go to twitter.com. Sign up by creating your account, ie user name/password, etc. Then go to SofiaHuntington in the search bar on home page. Click on any one of her posts and it will take you to her page. You will see a button that says "follow". Click on it and it will turn into a green check mark. Now you are a follower and can get the minute to minute... well you know what I mean... more of the daily small stuff. This is exciting! There are 4 followers now. Im the 4th one!

3 followers on twitter so far!!

So I still havnt figured out how to be a twitter follower, a pathetic admission I know, but I AM of the older generation, a little techno challenged. So far Lauren Sanford, Aunt Jessie and cousin Lili are followers!! Its kind-of exciting, I just updated it but the nice thing about the twitter is that there will be a lot more little postings on details of day. Brookie put the current slide show up last night. Thx Brookie, I love it!! Bonnie

NEW SLIDE SHOW!! by Brookie Fallon

Calling all Twitter Followers!!!

OK, Sofie has a twitter account under SofiaHuntinton!! It might be very cool to see how many followers we can build up on her account. If it goes well and seems to be a good way to get currant info out, we will be very good at twittering consistantly while she in in the hospital. If it doesnt generate a whole lot, we'll just stick with the blog as our main way of communicating info. So... go to twitter.com and sign up to be a follower and we'll see if it works!

October 22- first day, second round

We checked in at noon. She has been hooked up to an iv fluid that will flush her body to a certain ph level to where she can withstand the metheltrexate. After that, they will give her 15 minutes of zophran which is anti nausea medication. The chemo will start. Its almost 6 pm and her ph level still isnt high enough, but Im anticipating any time the nurse coming in to start. Watching Lord of the Rings. Grandma and grandpa were here for a while. Now daddy g is here and of course, Brookie. I know my daughter loves me but I gotta tell you, my presence here doesnt have nearly the impact as Brookies does. What a blessing. Thanks Jackie. OK, due to the ever awesome Morgan Lundsford, Sofie now has a twitter. Now I dont know exactly what that means yet but I do know that if you sign up to be a follower, we can get blow by blow info to her fans, haha, the info is of a more brief variety but it will tell you things like, chemo iv just started or sof is awake, etc, etc. I think the hs kids will groove on it more that we adult variety of peeps, if ya know what I mean. More info on twitter is upcoming. Ive got to go figure it out!! Bonnie

schedule for this 2nd chemo round

Sofie enters Primary Childrens today at noon. She will be in the hospital 5 days with 2 days off, then another 5 days in, 2 days off, and finishing with 3 days in. The last 3 days are the cisplatin chemo which was what she received during the first chemo treatment. Planning on coming home around the 9th of November. Not sure yet where we will be staying during the 2 days off. Sofie, Brooke, Lindsey and I went to Kingsbury Hall last night to see "Thriller", not for the faint of heart, it's SCARY!! Had a blast! Bonnie

October 20

Sof and I are leaving tomorrow morning to head back to SL. Chemo starts Thursday. Primary Children's Hospital has put some restrictions on visitors because of H1N1. No one under the age of 14 can enter the hospital (unless they are a patient). And no more than 2 visitors at a time per patient. Call and let us know if you are planning on coming down!! Bonnie

Fun Wigs at Halloween Headquarters

Bonnie gave me access to the blog so I could post some pictures from today. They are in a slide show above :)

I have been dancing with Sofie since she was VERY little... I was a senior in high school when she was in 8th grade, and I helped coach the dance team when I took fall semester off of sophomore year. Some of the "college girls" came home this weekend and we were so excited to spend time with Sof and be back with the dancer family. Today I went shopping for hats and wigs with Bonnie and Sofie, and had quite a fun time trying on some very silly wigs in Halloween Headquarters. Sofie tried on almost every wig in the store so we documented all her different looks for you all to see! I have a few more pictures from the visit that I will post later too :)

All my love,
Lauren

October 19th saying good-bye

Crossed another bridge last night at 12:30 am when Sofie woke me up and quietly told me it me that it was time to take her hair off. She had been wearing it in a pony tail for a week, eeking out all of the time she could with her long blonde locks. Scared to wash it, she finally did, knowing what the outcome would be. I held her hands tightly while Jeff shaved it. She was never more beautiful to me in that moment of struggle and tears. What is it about a woman's hair, her crown...? She chose not to look, I found a soft cap for her to sleep in, dad gave her a blessing and we fell asleep in her bed. I woke her this next morning at about 9:30. Her home nurse was here to take blood and vitals. Her words to me when she knew it was time to awaken were, "but I dont know how to be bald". Due to many many txts on her phone of love and encouragement and the anticipation of an early morning visit from many friends, she went downstairs alone and took off her cap in front of the mirror. I wasn't there for that moment but I knew it was happening. As she described later to her friends and I, "I couldnt stop laughing!" Thank goodness all is well. We spent the day shopping for hats and trying on all the wigs at halloween head quarters. From anguish and tears to quiet and back to laughter. She never ceases to resurrect joy.... Mom

October 17th- more bravery

It s important for anyone in a crisis to understand that you dont have to be strong just because people may expect it of you. They may inadvertantly set you up by saying "wow you are so strong!" Breaking down or even just having a bad day help propell you forward in the process of wellness. Tears are vital. If you dont allow yourself these moments of anguish you may be heading for a crash. I dont want that for you Sofie... you know who you are and so do we. Last night was incredible!! And you shared that with a handful of people who have your back and cherish you. Thank-you for letting us love you... Mom

October 15th

Sofie has enjoyed a few outings the past couple of nights. Last night she attended her sister Hallies baptism and tonight she is at the ballet with friends. She will also have her first sleep over since chemo at the Kroger home. We are taking extra precautions to protect her from getting sick. The 2 big ones are wearing her face mask and sanitizing her hands. I sent her out the door with both and her friends are very good at keeping their hands sanitized as well!! It is definitely risky to let her out especially during flu season but don't want her to stop living either. The likelihood of her getting sick staying at home is high as well at this point. Jeff reminded me that in Japan, no one goes out without their face mask. Maybe we should start a new face mask trend in Jackson and try to keep our community flu free this season!! Bonnie

bravery

one of the great challenges about something so life, and i reiterate, life altering is how magnified all our strengths become, but at the same time, our weaknesses. as survivors survive (and thrive), we may sometimes feel like there's no room for our weaknesses because we have to be strong, not just for ourselves, but for everyone else. i want everyone to know it's ok to experience frustration, fear, and even anger, and that we will with each other. that is the great challenge from something like cancer. it is no respecter of feelings. it attacks and we are still ourselves. let it be known we are not always brave, we are not always kind, and we are not always great to each other. but we have faith that god will provide and see us through.--geoff (dad)

related to bonnie's post about blood cell counts...

so, my sofie told me about her low white blood count and i wanted to get an idea of what that means with respect to ongoing chemo. so i dialed (dialed? really?) dr jones (god bless how willingly he picks up our phone calls), and to be sure, the count is low, but absolutely as planned and actually, "regular," right on schedule for treatment. i knew that, but am grateful for reassurance that alleviates anxiety right at the surer level just beneath it.--geoff (dad)

This is back in jackson the the day of sofie's biopsy. all of her friends ran out to see her when we got to the jhhs homecoming football game

This is sofie and her cute boyfriend damon. with bear and helper

Brookie shared Sof's hospital bed all 3 nights

A few minutes before 1st chemo started

October 13th

Sof has a good red blood count meaning her energy/oxygen is present. Since we are at the 10th day since chemo her white blood cells are very low meaning she doesnt have a defense system against sickness. Kind-of odd, she feels better than ever since chemo, she's just more vulnerable than ever of getting sick. So visitors, be sure that you are well. We dont want to stop you coming because right now Sof shouldn't go out!! Just a heads up..... thx Bonnie

Sunday eve October 11th

Sof is experiencing pain in her tumor, a pain she hasn't had up to this point. She started pain meds which she isn't fond of taking... I called her surgeon who thinks it may be a fracture. Getting a fracture along the bone line where you have a cancer tumor is a complication that isn't uncommon. He wants us to go back to see Dr. Khoury to get a radiogram. If its not a fracture then it is likely inflammation from the bodies response to large amounts of dead cancer cells in her leg. ( I like the sound of that.. DEAD cancer cells!)

Sof continues to be good natured about her illness and uses humor every day in response to being sick. Hallie and Sydnie have been a huge help in getting things done around the house and keeping attitudes positive. Syd was much more with it emotionally than I was on Saturday.... I was super proud of her and took comfort in her "stellarness". We had a beautiful Sabbath at grandmas and grandpas today listening to replays (highlights) of general conference. We are learning a lot... sometimes gracefully and sometimes not, but moving forward. Much Love, Bonnie

October 9th

WOW!! Best day so far for Sof. Started out slow but she's so clear and happy today. She had the best sleep ever last night. Tonite she was able to go to the dance studios to visit her teachers, then went to half-time to watch the dance teams last football game performance. Boy, I was worried that she was gonna be too pooped but she came home feeling great! She is now surrounded by friends at our home watching "Ferris Bueller's Day Off" (thank-you Kristen!!) The cool thing about Sof getting this movie in the mail today is that she started watching it for the first time at the hospital while getting her bone scan so only watched the 1st 30 mins. My friend from HS (Kristen Schlupp!) randomly sent this particular movie and we just picked it up in the mail today!! She is so excited to finish it! How perfect was that. We are so blessed. Sof also got 3 very inspiring letters today due to the outpouring of love from you. Bonnie

October 8th

Sof had her first home health care appt today. They will come in every Monday and Thursday to take her vitals and check her blood levels. Because she now has a port, they dont have to poke her arm to do this. I just numb her portacath and they take it from there. Can you imagine getting your veins poked twice a week for months on end? Yeah, technology! Sof spent a lot of her day on the couch but she is improving each day, moving more, visiting more, sleeping less.... Tonite at about 8:30, she took her first outing. We went to the high school and watched her dance team's last 20 minutes of rehearsal. She got lots of good lovin' from her team mates, Brandi Orchard, and Terri Miller (our favorite nurse). Hoping she will sleep better tonight... last night was a restless one. We are in Jackson til the 21st. Maybe she'll start feeling well enough to do some online school this week so she can graduate class of 2011!! Bonnie

feeling much better

without being right there in jackson as an eye witness, my sense is our sofie seems to be feeling ever so much better and recovering well from her first round of chemo (she prefers the word "chemo" to "chemotherapy," for the record). her appetite seems pretty healthy and she's eating well. not only that, she's got energy for fun stuff like calling about the new phone she's researching.

my last text to her:

hey dearest puddin, 25 year old john lester, pitcher for boston red sox tonite in the playoffs, is a cancer survivor/thriver just like you will be! he did chemo when he was like 21ish and now is one of the best pitchers in all of baseball.--geoff (dad)

October 7th Back In Jax

We pulled in last night at 1 am. Felt great to be here. Walked Sofie into her newly sanitized room which looked like heaven. She was so happy when she saw it. Her young women's president came beforehand and did it for us so we didn't have to worry about germs in her room upon arrival. We slept together in her bed... so strange to be the only ones here. Jeff and the girls will return tonight. It'll give me a chance to keep sanitizing. Its one thing to keep your house clean and another to keep it sanitized!!! So many things Im learning right? We're gonna try to pace ourselves on visitors but would love to see you when possible! Bonnie

One of our favorite CDs. This is the last song on the album. It took on more meaning as we listened on the drive to Utah, Brooke and Sof in the back seat asleep (remember to pause embedded play list at bottom of the blog which takes a few moments to begin):

such a relief!

so, sofie's blood levels are all good! they think the fainting resulted from over-medicating and dehydration. getting the admixture right for her nausea is one of many challenges especially initially. combine that with the nausea making it nearly impossible for her to take in fluids, and you have a real dilemma.

also, one of the counter indications (how on earth any chemotherapy is not counter indicative is food for thought) for cisplatin (one of the most virulent of all chemo) is possible detriment to the heart, but an ekg showed no ill effects! so she is actually doing very well, and she ate today. alot! hooray, hooray, hooray!

today was a stressful one, and the relief is just as intense. thanks for all your prayers!

geoff

Oct. 6th AM

well, sofie passed out this morning on her way from the bathroom back to bed. bonnie, who has been with her minute to minute, was in bed with sofie who got up to go to the bathroom. moments later bonnie hears a thud and subsequently finds sofie collapsed in the hallway (i believe) luckily with no damage except to a lip. they've gone to the hospital where they drew blood to find if it's dehydration or a blood issue. we'll keep you posted--geoff

Coach Lauren

I recently talked to Lauren Sanford on the phone, and she noted that she was feeling bummed she could not be in town to see Sofie. This picture is for her, because as our favorite white witch, who we wolvies simply loved (in Lion the Witch and the Wardrobe 3 years ago), and a fabulous Dance Team Coach, we know you are thinking about Sofie and everyone. Much Love.

Super Seniors

This is a picture from this past summer. Another lake day, but it includes Lindsay T., Siobhan C., Sarah F., and Brenna B...some other dancer friends and Brenna who have already graduated. We went to String Lake, and went swimming. It was FREEEEZZZINNNGG!!! Push through Sof Gof, like we did in the cold water last summer!

Monday Report (Oct 5)

Sof slept most of the day but did have more coherent moments when she opened her eyes. Still hasnt been able to get on her feet. Brookies flight flew to Jax last night and then back to SLC due to weather so she came back to spend another day with Sofie. Maybe tomorrow will be the day Sof is able to get out of bed without being sick. For about 30 minutes this morn she became emotional, reality setting in... but we are pushing through and tomorrow will be a better day as the med starts to wear off and the chemo flushes out. We dont know when we will departing back to Jackson but thats ok, we are in good hands. Bonnie

Love the new pix!! That is happiness. We are out of the hospital as of noon today.... I dont believe Sofie remembers leaving the hospital or getting to grandma's house. She will stay on anti- nausea meds for another 24 hours, again every 2 hours through the night, which will keep her sleepy. Dont know exactly when we'll return back to Jackson. Its really depends on her. Her team of care-givers has warned us against school, church, airports and public areas in general. Being sequestered at home will definately cause her sadness... little social bug that she is. We will welcome visitors who are extremely well and wash-up before theyenter her space.

Thanx Bert for the darling photos... you're hired! If anyone with website experience knows how to put permanent photos on her template (ya know the kind that dont scroll down and get lost!) let me know.

You have given us so much, in so many little, big and varied ways and we love all (even strangers) who have taken an interest in her illness and care. Bonnie

Laugh

We've come to rely on the word Laugh because we cannot forget to do so. This is a summer lake picture of some of the girls. Remember to Laugh. It's the best.

The Fab Five

So this is actually Bert posting this-Bonnie gave me some creative reign on the blog because I've got some photos, and a bit more time on my hands. This is a photo from the Progress Performance at the end of last year. We did a circus piece. Michaela Ellingson is the lion. Brooke Fallon is in front. Sofie is Sofie. Madison Williams is in the very back, and I've got the crazy red lips behind Michaela. This is a picture of the Fab Five, as we jokingly call ourselves, or the Dancer Cult. We miss Sofie so much and she's only been gone a few days, but we are behind her 100%!!

Teen-age Friends

I saw something very peculiar this morning coming up to Sofies room. It was actually a most beautiful sight.... teenagers sleeping over night on couchs (good ones) in lounch area. They brought their own blankets and pillows and were crashed all night. Visitors of teenage patients no doubt. I thought to myself, wow, Damon could have that couch, Michaela could have that one, Maddie, Bert, McKensie etc. etc..... just a thought!! Bonnie

PS I asked the nurses about it and they said its was absolutely legal and encouraged!!

Affects of chemo on Sofie

Please move past this post if you dont want some details of how the chemo is affecting Sof. One thing Ive learned recently.... not everyone does the hospital scene.... some have great difficulty being in this setting.... and definately some people wont want to hear about Sof's chemo!! But hear goes. Sof started chemo medicine (I have the hardest time calling it medicine because medicine is spose to make you feel better.... In the very long run, it will, right?) yesterday at 11:45 am. They gave her 2 anti nausea medicines beforehand. They said by 3 she may be feeling sick. At 7 pm was was sick and made the comment, " cant they just put me out for the next 9 months while I go thru this?!" Thats when it hit her, I think, at least the first big bump in the road. They gave her an additional and different medicine to help. It made her very happy and loopy as well. But it was an improvement on what she had been feeling before. Shortly thereafter she sunk into a deep sleep. We had lots of visitors last night which was great for me but Sof slept through it. They dont have visitor hours but I decided last night that 7 pm will be our cut off.... we're not much good after that!

Anyway, they are now giving her a different anti nausea med every 2 hours... they all have different side effects so they cant keep giving her the same one over and over. She didnt sleep well due to nausea despite the meds and like I said yesterday, they pull her out of bed every 2 hours 24\7 and make her pee. The chemo med itself is bright red and because her white and red blood cells as well as her platelettes are depleting, her face is a pale yellow color so dont be alarmed when you see her... she is still beautiful, just weak. The nurse said that today would be harder than yesterday. So its true that cancer is not for sissys and that includes the people who have to watch and administer to her. Brookie and I have been here in the hospital every hour and when its time for bed, Brookie crawls right in with her. What an experience for a best friend. Im going to try to get Brooke out today to go get some stuff for Sof. Thanks to all loved ones who have stepped on this crazy train with us.... for the thoughts, prayers, cards, meals, gifts and untold love..... Bonnie

Chemo medicine

I know this is a lot of blogging without photos but just need to get the info out there. Then I'll attempt to download some pix!!

Chemo is not really medicine per say but more like poisonous chemicals that will go in and kill the cancer cells. One of the bad parts is that it will also kill most of her white blood cells. The white blood cells are the cells in your blood that fight infection. The chemo will severely hinder her bodies ability to fight off even the smallest of infections ie... the common cold. It will be really important that any visitors that Sofie gets needs to be "sick free"!! Thats my textbook message for today! Luv ya Bonnie

second day in hospital... first chemo day!

... she got her central line last night... a bit of a painful post op for her but she felt much better by about 10 last night. Brookie spent the night with her in her hospital bed. Both in their footy pjs. She is definately the biggest "kid" in this hospital!! Its taken a while to get her chemo going this morn. They have to fill her with a certain number of fluids so that the chemo flushes thru fast... otherwise it hangs out in the bladder and eats away the lining. She said that was "creepy". Officialy started chemo a few mins ago and she is falling asleep with brookie again in her bed!! This stream of chemo last 48 hours. She will be released Sunday afternoon and we are hoping to fly back to Jax on Monday eve, 8 pm flight. She will return to hospital for 3 weeks on Oct 22nd. While we are hospital free we are flying with her to NYC to get her fitted for her hair. She will come home with her "new hair" around the 12th. Hoping the chemo doesnt wipe her out too much for the trip!!

Best way to reach Sof and I

Primary's is kind-of like a cave.... pretty unstable cell phone reception. Best way to reach us is txt, email, or facebook. Cell phone reception depends on where we happen to be in the building. Sofies in surgery right now, then she'll be admitted. This hospital is super crowded! They dont have room for her on the regular chemo wing so they are still trying to find her a room ! They couldnt find her vein when they were putting in her IV so I took some pretty funny pictures of her facials expressions while they were digging around in her hand..... many of you will be able to relate to this !

First Big Day in SLC

After another mri, a bone scan, an echocardiogram, and a meeting with Dr. Jones (her surgeon) and Dr. Wright (her chemo oncologist), we finally have a chemo schedule for Sofie. Today she got a hearing test and is having minor surgery to insert her central line into her body. This is the place where all of her meds will be injected for the next 8 months. That way they dont need to keep poking her. At 4 pm they will administer her 1st chemo treatment. If you are in SLC, she can have visiters Friday but will probably be released sometime on Saturday. We will stay at my folks for conference and fly back to Jackson Monday night. Her next chemo lasts for 18 days starting Oct. 22nd. Surgery falls on Christmas eve according to the calendar.... but Im sure they'll let us wait til the 26th!!

Her chemo schedule only gives her only 4 weeks at home in Jackson til christmas..... more time in hospital than we thought. After her surgery, if they find that her body responded well to the chemo, she will have chemo for another 20 weeks (5 months). After that we hope to hear that she is cancer free for good!! Bonnie