December 30th

Got a phone call early today with news from the pathology lab. You may remember that the doctors know nothing about the cancer tumor until they blast it with chemo, take it out and study it under a microscope piece by piece. This is done after removal. After assessing the tumor they are able to determine exactly what percentage of the tumor was killed by the chemo drugs. If the chemo was not able to do the job anticipated, the treatment plan changes using different (even less desirable) drugs and extends past the time frame originally anticipated. The docs shoot for a 95% dead tumor as a best case scenario. Sofie's tumor came out 98% dead!!!!!!!

Essentially this means her outcome was even better than desired & will not require changing her treatment plan in any way. All systems a go. She/we will begin treatment again on January 7th, the 1st in 2010 of 12 treatments, each requiring a 5 day stay.

I feel humbled and relieved but I can't say surprised because Sofie has had "best case scenario" in terms of her response to treatment since the beginning. This is due to the person she is, but also because of who you are--support everywhere from complete strangers to beloved acquaintances. You have brought us to our knees. There are not words to describe how we feel about the outpouring of your hearts in Sofie's behalf. There are good, brave, generous and compassionate people in this world and we get to meet them and share in their lives everyday because of cancer. Thank you for sharing your hearts with our family.

Bonnie

a happy little side note (and an incredibly happy HUGE one)...

...looks like sofie's boyfriend, damon, and his jackson high school basketball team ranked #4 in the state, beat their rivals 64-62 in double overtime. way to go, damon!

stay tuned for a huge announcement from bonnie of exceptionally good news...

--geoff

blood counts...UP!

all of sofie's blood levels are at least good, and some of them very good! hooray!!!

and daddy in provo didn't lose a movie megan had sent us in the mail. whew! (especially after he was sure he had delivered it, or at least NOT LOST it.)

Megan Maxwell

Let me introduce you to Megan Maxwell. She has been babysitting for my sister (Jennifer May) in Duvall, Wa. since she was 10 years old. It was also at the age of 10 that she began doing her own little pre-school which my sister promply enrolled her little ones into. She is 20 years old now and finishing her degree in early childhood development. She also teaches children's dance in a studio in Duvall.
When Sofie was diagnosed, Megan became involved in following her blog. She had never met Sofie but last summer she got tickets in LA for a taping of SYTYCD and needed an adult to accompany her so I went. Thats when I got to know Megan. She decided after Sof got cancer, knowing that sof was a dancer, to set up a surprise week-end in Seattle and arranged for tickets to the last SYTYCD on tour in Seattle along with back stage passes. We had a ball that week-end and Sof and Megan bonded. After we got back home to Jackson, Meg asked how I would feel about her flying to Jackson and asked her mom if she could have the trip for Christmas. I was excited but knew that visiting Sofie meant a lot of health care and hard work. Living at the hospital can be grueling because of the long hours, and when Sof doesnt feel good it can be a heavy environment. Megan made it clear that she was coming not to vacation but to serve in anyway possible. She got here on the 14th of December, flying straight into Jackson and then drove down with us for the surgery. She lived at the hospital with Sof for 7 days and was with her during Sofs hardest moments at the hospital. She sat with sof, holding her hand and rubbing her arm from a chair next to her bed for hours in a dimly lit room to help Sof get her mind off pain and nausea. Megan has become a nurse, a mother's helper, a house cleaner and organizer, and a cook. She times Sofies medications every 3 hours on her phone all thru the night to make sure sof gets her meds on time. She gets her to the bathroom before I am even aware that Sof "has to go" and situates her back in bed with a bazillion pillows propping her leg and cushioning her boney areas that are so tired of lying in the same position! She has been playing beauty parlor with my 8 and 10 year old, spotting them in gymnastics and choreographing dances with them. Because she is so experienced with little ones, she is sometimes the only able to console Hallie when she is having a meltdown. I cannot describe enough the depth of my amazement at who this girl is and what she has tirelessly given to our family during this time. I honestly dont want to adjust to not having her here anymore. She leaves on New Years day to finish one more semester of school. We will miss her greatly and are trying to talk her into coming back for the summer!!! Thank-you from the bottom of our hearts. You will never know the impact you've had on our lives..... Love Bonnie

PS I am looking for a ride to SLC for Meg on New Years day. She will need to go to Kaysville to stay with my parents and fly out the next day. Let me know if this might work with any of your schedules!! Thank-you!

December 24th

Sofie is becoming more mobile and less weak. She is learning how to crutch but her leg is dead weight because she has no muscle memory in that leg. Its largely a new and thus foreign body part in which she will have to learn from scratch how to use. She cant hold it up in any way so while she is crutching we have to hold her leg out front for her. We can do this at home no problem but outside of home, she needs a wheel chair. Sof was in great spirits today and even went to a 2 hour catholic Christmas mass where we have dear friends. I was a little nervous it might be too much for her. Sometimes her pain meds cause her heart rate to go down and she feels she needs more oxygen. It triggers an anxiety response which we then have to treat with benedryl. Although I had her meds with me at mass, I forgot to bring the benedryl. When anxiety hit she just put her hand out and asked me to hold it while she breathed. Ten minutes later mass was over and she was able to get passed it. We finished the day off with lots of good cheer and are now anticipating the arrival of Santa (yes, I still have one more child who believes!). Merry Christmas everyone and thank-you so so much for your love, support and untold generosity from acquaintances and strangers alike. Your gifts always come when we need them the very most and even the smallest gestures are so very HUGE to us and to Sofie. This is what Christmas means to us and thank-you for catholic mass telling us the story of Jesus and the reason why we celebrate Christmas.
Bonnie

Sofie's Return!

The blood transfusion went great. Sofie managed to get some rest while getting the transfusion. She is feeling much better and is very excited to get to be home for Christmas! We left Salt Lake around 6pm. She is currently in the back seat spralled out sleeping with about 100 pillows! It will be so nice to have Sofie at home and relaxed! As Sof states on her Facebook "this is the true meaning of Christmas!"

Megan

Blood Transfusion

One of Sofie's surgeons woke Sofie up at around 6am this morning to talk to her about her blood levels. Normally if one's red blood count is as low as a 20, a blood transfusion is required. Today Sofie's blood count was a 19. She is very sick this morning and will require 2 blood tranfusions to get her levels back up. They are prepping her now. Each transfusion takes up to 4 hours. Looks like today isnt the day we will be returning. Its very fogging and snowy outside.... dont want to travel after sun goes down. Maybe tomorrow.
Bonnie

cancer shmancer

one dynamic of critically major events is that all other aspects of life roll on and demand attention. included is the element of emotional life that can catch up to one in a hurry. sofie has dealt graciously, if painfully, with struggles going on around her from those who ought to know better (namely her ridiculous provo daddy). anyway, thank you heavenly father for providing the peace that passes understanding even to and for those who may least deserve it. and thanks for "granting us serenity to accept the things we cannot change, the courage to change the things we can, and the wisdom to know the difference."--st francis assisi.

--geoff

Return to Jackson

AGAIN, OUR PLAN IS TO LEAVE SLC TOMORROW, DECEMBER 23RD AT AROUND NOON TO DRIVE HOME TO JACKSON

December 22nd

WHEN YOU GET THE CHANCE TO SIT IT OUT OR DANCE..... I HOPE YOU DANCE.....

Hope takes
Never ceasing to be amazed,
Wearing your soul on your sleeve,
Holding your breath,
Waiting to hear "I love you too..."
Believing that tomorrow could be better than today,
That you'll get a second chance,
That you'll make a difference,
That you matter.

December 22nd

Yesterday was the day that wouldnt end and just needed to. Finally ended it with a much needed priesthood blessing for Sofie. We didnt get to sleep til 2. Today it feels like a weight has been lifted. Doctors came in and unveiled her leg. I will blog the photo when we get home. Her leg looked fantastic!! Scar is beautiful, and even the doctors said it looked as good as it possibly could. She feels so much better now that it is in the cast. More secure. We will most likely be leaving tomorrow. Megan had her trip extended so she will be coming home with us for Christmas. We dont have the exact date for our return back to the hospital but it will either be the 2nd or 4th of January for her next chemo.
Sofie is back in high spirits today. Yesterday was one of her lowest points since diagnosis. She's got way too much going on in her little life and she was feeling the sheer the burden of it.

New days are GOOD!!!!! God is good. Bonnie

December 21st

Sof finished out last night by using bed pan. This morning she insisted she use the toilet and did a fantastic job getting out of bed and back. Then she took a long nap. PT came in to get her to try crutching. She stood up but couldnt hold her leg out front on her own once she was in a standing position so we held it for her. Close call with her passing out as I looked up and the blood had drained out of her face. We got her back down immediately. She felt like a big loser because she felt like a failure. Dad G and I talked her through this faulty thinking!!! Every morning and night brings new progress of things she didnt think she would be able to do. Its hard to believe she might actually be ready to get released tomorrow when she can barely get out of bed. Dont know if a 4 hour drive in the back of my car is going to be what the doctor ordered. Getting home might be trickier than we thought. Might need a bed pan for the drive. Cant imagine getting her into a gas station!! Also cant imagine her using her crutches for a while when she cant prop her leg in front of herself right now. Wow, we thot surgery was a sort of summit point but you know how you're hiking and you think your at the top til you get there and see that there is more? Thats what it feels like. Learning how to use her leg will be extraordinarily challenging, cast on or off. I will be like learning to use a new body part cause that what it is!! She is sleeping now. Uncle Todd coming with In and Out burgers! Sof has more uncles than we can count and they all all the BEST!!

Bonnie

More on December 20th

Today was hard. After coming off of the epidural her pain hit hard. She no longer had her catheter so she had to get up to go to the bathroom. It was excruciating for her. Lots of tears, just had to brave through it. Took many hands to navigate it. Proud of Sofie for what she accomplished. Sad for what she goes through. She had to wait 3 more hours to get her next round of pain meds and her pain was already high from getting up. Its 9 pm now and she is good, pains meds kicked in. Both her uncles here to visit..... Shawn and Ross. Sofie is on the phone with her Grandma Wilcox. We are in good spirits again.

Bonnie

December 20th

Sof got a good sleep in! Damon, who arrived last night with his mom and spent eve with us, arrived again first thing in the morning. Jeff, Hallie and Syd flew in early this am. And of course, Meg is here til tomorrow afternoon. Daddy G is always here.

Sof had her catheter and epidural removed today. Pain will now be managed by narcotic Loritab and Valium. Her pain level went to about a 6. She has been happy by and large today.

Bonnie

December 19th

Tried to sleep in but Sof got her 1st visitor at 8 am!! Eric and Becky Wilcox! No biggie, her physical therapist came at 8:30 anyway and Sof was so excited to see them. Sof is a little weaker today, low red blood cell count, nothing we're not used to but it makes her tired and drawn. Just when she finally got back to sleep at noon, her physical therapist came back and made her get up. How rude is that? Its all good.
Sof has grown attatched to a male CNA, Whit, that has been taking care of her. As we were all just doing our own thing here in the room, I looked over and Sof was crying. As the often panicked mother of a cancer patient I assumed she was in physical/emotional pain, and asked what was wrong. She was talking with Whit who had just told her he had a 2 year old son with a rare form of muscular atrophy. He has already beat the odds of life by reaching the age of two. Sof couldnt control the floodgates as Whit apologized that her tears were his fault. We spent time thereafter watching Jonas blogspot. What a dollie he is. Wow the people we meet.

Bonnie
PS coleman2family.blogspot.com (Jonas blogspot!)

1st Physical Therapy Appointment

Sofie had her first physical therapy appointment today at 2pm. The lady had Sof slowly sit up on the edge of her bed for about 10 minutes. This is as far as they had planned to go. Usually this is very difficult for patients with this surgery to do so quickly. That was not the case for Sofie. She proceeded to stand with the help of the nurse. They then helped her move to a wheelchair with her leg propped up. She said she felt fine. The physical therapist was very impressed that she could do that much! It was a very exciting moment for all of us! -Megan Maxwell

December 18th

Sofie got out of surgery at around midnight last. Dr Jones came in to talk with us. He was amazed by her during surgery. Her vital signs were strong throughout, there was little if any bleeding, and they DIDN'T need to do a skin graft, which they thought they would, even though they had to cut a triangle section of skin out (the skin which had been been touching up against the tumor.) They were able to save both main arterial vessels down her calf muscle (which took an additional hour and a half of surgery in and of itself). Her muscle was so big and healthy that there was plenty to draw from when they folded it over the implant, a part of the procedure that protects against infection long term. Because her skin stretched back together so well and they didn't have to do a skin graft, her scar will have a much nicer result. a small chance exists that a skin graft might still occur due to swelling over the next couple days, but that chance is marginal at most.

After surgery she was wide awake, so clear and lucid that the nurses were commenting amongst themselves about it. We were given two options for her pain management before surgery started. She could get an epidural (which is standard procedure in many hospitals nation wide) or could receive IV narcotics (morphine). It would seem a no brainer to go with the epidural but there is a slight chance of masking nerve damage which they like to test for directly following surgery. Naturally I was worried about the narcotic option as our family had a dear friend who was told there was no question he would have to go to rehab after his leg surgery because of the ammount of pain management that would be required.

We decided to compromise. They would insert the epidural but not begin dosing it until after surgery as needed. When she got out of surgery, she rated her pain level at an 8. Her doctor made the comment that her pain tolerance is high. He called her ability to handle pain "stoic". As she was in a high level of pain, her doc felt 100% confident following nerve testing. They began the epidural and her pain went from 8 to between a zero and 1. Any woman who has had an epidural can attest to the absolute blessing of this pain blocker.

Sof fell back asleep at 3 am. however kept awaking through out night for nurse inspections. She woke up for good at 10:30 which was also the time Geoff, Meg and I awoke too. To me it felt like 8 am at most. I felt like I lost half a day!

Sof will be in a splint for 48 hours so that the swelling has a chance to go down before the cast. Then she will get her cast put on. Sofie is currently playing cards with her dad, texting her friends and playing on her new computer. It will be a joyous day for us all.

The atmosphere in this hospital today is full of sick families who are full of the joy and faith that the Christmas seasons brings. It is very busy, barely any available space in the cafeteria today. I would never know with the conviction I have today the power of faith that carries people during their darkest hours. Sofie's result yesterday was facilitated directly through the power of your faith and prayers. Many of you fasted, including her sisters Sydnie and Hallie. (Hallie asked her dad if he would write a note to school so that she wouldnt have to keep explaining why she wasnt eating lunch). From Sydnie's 5th grade class, 2 interfaith friends fasted with her. Many of you are simply anonymous support whose faithful gestures have carried Sofie's progress to its current fruition. I am overwhelmed by who you are, each of you, and your faith in God who sustains us all. I am very emotional this morning, filled with the spirit, and ready to move her recovery forward now. She will be back for chemo within the next 14 days. Sure hopin' to make Damon's Star Valley game in Jackson.... first home game.... GO BRONCS!!!! We will try to blog lots while we are here!!!!!

Bonnie

a resounding success!

sofie's surgery went exceptionally well. she has been lucid and very comfortable since entering the recovery holding room last night around midnight. the next milestone will be no infections. keep fingers crossed and those prayers active! thank you all for the profound impact of your faith and prayers. the nasty interloper is removed!

dr jones, the surgeon, commented on her exceptional health and muscle tone. they use her calf muscle to protect the implant in some technical way and sofie's was so athletic (according to dr jones) that it made the surgery ever more effective. the metal rods inserted almost universally split the bone; sofie's tibia and femur both held firm, no splitting whatsoever! according to dr jones that is remarkable of itself. also, the doctors marveled post surgery at her recovery response; so lucid, so present and happy. currently she is very comfortable and we are having fun in the hospital room with her friend megan (the same megan who made possible sofie's attendance and backstage pass to "so you think you can dance" in seattle.)

--geoff

surgery underway

well, at 1:10 pm sofie walked through the doorway of the surgical unit leaving behind her mother, father, friend megan (all the way from the seattle area), and an angel of mercy from my lds congregation in provo who showed up at the hospital to help however she might. sofie was her typical good humored self throughout the entire morning leading right up to the walk that will remain etched, i am sure, in the heads and hearts of each of us there. if sofie registered any fear, it was hardly noticeable. incredible to think she walked through that doorway all biology to return 10 hours later without a tumor and only slightly metallic for the wear. we are at once terrified and comforted. we call upon father in heaven in united prayer to work the deep magic of christ and christmas upon dr jones as he lays hands upon our dear girl.

before signing off for now, a deep thanks to everyone for their donations.

--geoff

December 17th... sugery day

So had a fabulous time in Jackson this go around. She got to take bows with lead dancers of Alice in Wonderland and spend countless hours with dancers back stage, at dress rehearsals and performances. Two nights ago, friends and family met for a surprise send off for her. She was presented with her new Mac Pro lap top which the "schmancer club" purchased with the Sofie bracelet money... very joyous occassion. Last night we watched a full dress rehearsal and left Jax at 8:30 pm. We had a blast on that drive, me, Sofie and Megan Maxwell. Sofie voice recorded her whole cancer journey from the begining so that Megan could use it for a dance performance that her dance studio is performing in May about Sofie. Sof felt great, even ate pizza at 11:30 right before she was to start her fast. We laughed harder than ever the whole way. At 1:20 am, we pulled into the driveway of my parents. Sof said she was sick so I got her meds and walked her in. By the time we got her in bed she was white. I asked her what she was feeling, said she didnt know. She started crying and said it was getting worse. I asked her where it hurt, said she didnt know, crying harder. She said she never felt anything like it, starting getting hysterical. Sofie has NEVER had an anxiety attack before in her life but I knew what this was..... been through it with her brother. I gave her 2 benedryl which I knew would act as zanax and began to rub her legs and get her breathing right, when SHE said, I think Im having anxiety about tomorrow. The doctors had told us that cancer patients will typically throw up anticipating going into the hospital again but no one mentioned the possibility of a full blown anxiety attack. It made sense... she had cried a little earlier about being scared for surgery. So thankfully she was dead asleep about 15 minutes into the anxiety.

We are leaving for the hospital at 9:40. Sugery at noon. Fasting today and praying continually for clarity in that surgery room where 7 professionals need to work 10 hours on her leg. Thank you for thoughts, prayers, donations, fasting and the love of so countless many. Bonnie

surgery this thursday, dec 17

if all goes as planned, surgery will take place this thursday, dec 17 to remove the tumor and to implant metallic replacements of excised knee and bone. we invite all to fast with us that day on behalf of sofie and the surgeon, dr kevin jones, and pray for each directly and by name. thank you all so very much.

--geoff

viral infection

turns out the mucositis wasn't mucositis after all. sofie has a viral infection that apparently we just wait out to go away of its own. hopefully no big deal...

surgery and fasting postponed!

so, everybody, surgery has been postponed until this thursday, dec 17, due to mucositis. please adjust your fast accordingly.

a slim chance exist that it's an infection and not mucositis. but dr jones believes it is most likely this very common side effect of methotrexate, one of three chemo compounds routinely introduced into sofie's body.

mucositis is NOT dangerous of itself. dr jones said it's more a hassle and possibly painful for sofie than anything else. it is dangerous with respect, and i do mean respect, to metal inside the body which is why they postpone surgery for it. bacteria constantly sheet off the little white sores heightening the possibility of infection to the inserts.

Dates we will be in Jackson

Some have asked when Sof and I will be home. Doc is saying it may be 5 days in hospital. We are tentatively saying we will leave SLC on the 16th or 17th with a return back for chemo on the 27th. Gives us approx, 10 days home for the holidays. When we get home, she will largely be immobile as her cast will be from hip to foot. She may be in a wheel chair or may be good on crutches. We won't be going out a lot but hope to attend Alice in Wonderland on closing night, the 19th. Sofie may be requesting baby blue or green for her cast..... she really wanted me to include that.... amazing info.

WE LOVE YOU BRANDI ORCHARD!!!!!!

Bonnie and Sofie

Prayer Rolls

If you are attending the temple today or tomorrow, please place Sofie's surgeon's name on the prayer rolls. And if you are not attending the temple and are so inclined please call the temples and have his as well as Sofie's name added. I will be attending the Bountiful temple on the day of surgery so I will get the names put on the rolls there on the 11th. His name is Kevin B.Jones. Thank-you. Im so looking forward to a marvelous day at the temple on Friday. Bonnie

PS The surgeon spent over an hour with us this morning talking about the surgery. I guess I didnt realize that he will also be taking 3 inches of femur as well. He is a most amazing man as well as surgeon.

our cousin lili

sofie had a wonderful day today, highlighted by a long visit with her wonderful cousin lili hall. sofie simply adores her.

i spoke with dr jones today and the latest mri reflects pretty much what they would expect. they use it primarily for surgical strategizing. anyway, for this kind of procedure and by comparison, sofie's prognosis is dang good.

--geoff

missing friends

our sofie misses her friends. last night was a little rough, not with physical discomfort as much, but grieving time lost with friends and facing that fear of the unknown. currently we are placing much faith in our surgeon since the surgery is quickly upon us. sofie had an mri yesterday from which they should get some sense of the tumor response to chemo. we so hope for the best.

December 7th Happy B-Day Josef!!!

Some have been asking for Sofies shipping address down here so here it is:
Chuck Turner- for Sofie Huntington
175 So Edgehill Circle
Kaysville Ut 84037

Chuck Turner is Sofie's grandpa, my Dad

Bonnie

tender mercies

bonnie put it so beautifully this morning regarding sofie's night which went much better than we had anticipated: "one of the lord's tender mercies."

sofie suffered about an hour, no more, of touch and go with severe nausea, but all went away and she slept soundly through the night. today we are feeling the effects of everyone's fasting and prayer. sofie and i feel extremely christmassy just hanging out together on a wonderful sunday listening to motown christmas selections from pandora.com. wonderful day. thanks for all your prayers and good karma.

--geoff

Speaking of fasting

Hi, this is Bonnie. My thoughts on the fast include 2 opportunities for all those who want to participate (Lds members, community members and loved ones of ALL faiths):

The first opportunity is for a traditional first-Sunday-of-the-month fast about to take place and dedicated to Sofie's surgeon, her surgery and post-op recovery.

The 2nd opportunity including sofie's direct family, close family members, friends and all who want to participate will be a 24 hour fast combined with prayer beginning the morning of Friday December 11th and going til breakfast the next morning. It's a 24 hour fast begun and ended with prayer.

As well as being one of the best in the field, Sofie's surgeon, coming out of Harvard and Johns Hopkins medical school, is also a great man of faith. He is meticulous in his work preferring to work slowly and thoughtfully. Sof's particular surgery involves working around a plethora of vessels and tendons. Doc's performance needs to be immaculate, navigating through it all, as he replaces her knee and leg. She has opted for steel knee which will allow only a 90 degree range of motion bending her leg.

Our prayer and desire are for her to have an optimal result for a return back to dance next year DESPITE obvious limitations. She is dedicated to seeing her Senior year through to perform her senior piece which she has been choreographing in her head for many years. No doubt Sofie's goals are shifting as God directs her life. We are along for the wondrous journey of it all. Bonnie

fasting

for those participating today in the tradition of fasting first sunday of the month, we invite you to focus your thoughts and prayers on sofie's surgery scheduled this upcoming friday, dec 11. thanks to all for their prayers, love, and support heretofore.

basketball!

sofie's boyfriend, damon, scored over 20 points in their high school basketball opener that they won 55-30! go jackson and go damon!!!

last round of pre-surgery chemo

back to hospital tomorrow for the last pre-surgery chemo, another round of methotrexate. bonnie and sof are driving to slc tonight. sofie's white blood count is good, her red and platelets a little iffy at this point. similar situation last week and her counts came back by day of, so we hope for the same tomorrow.

a week from today for removing the tumor, so your prayers are greatly appreciated. also, we invite your fast this sunday.

--geoff

december 3rd

To the parents of my music students: Due to the change in Sofies surgery date to Dec 11th and her chemo schedule afterward, the very soonest I'll be able to teach is sometime in late January. Miss those kids!!
Bonnie

hooray!!!

after administration of methotrexate, levels have to drop to .1 before release from the hospital. i don't really know what .1 means, but when first measured following complete infusion, levels have been as high as 1750. three or four days of flushing are typically required to drop levels back to acceptable maximums. anyway, sofie is excited to be driving back to jackson today. she will be back this friday for another round of methotrexate which will lead fairly quickly to her surgery.

now, regarding the surgery: it is typically about a ten hour procedure. the doctor actually advised me to work that day. they also advise those planning to be on site to plan for time off site. it's emotionally grueling, and even as i write i am reticent to do so. regardless, we are excited for that nasty interloper to be out of our sweet girl's body!

sofie said yesterday, "i will proud of my scar!" that's our girl.

--geoff

latest nickname

knee replacement is a major part of sofie's surgery, so she has graciously adopted the nickname "newnee newnee."

--geoff

surgery date moved up!

so, guess what. sofie's surgery date has been moved up by over 2 weeks! if you're unsure, this is GOOD news to us. sofie's oncologist consulted with the surgeon and indicated she is responding more than adequately to chemo, recovers fairly readily, and so could proceed with the surgery sooner than later. so, on dec 11 she will be very uncomfortable, and in pretty severe pain for the first 3 days or so thereafter.

the last few days have been pretty traumatic: processing the news about surgical options was rough, and other significant events have really stretched us to our emotional limits...and beyond, frankly. sofie had a pretty rough night last; i simply can't quote one of the most wrenching questions she asked. and nearly as racking as the ultimate question is her grief over dance.

ugh, blogpost just failed to save over an hour of work. i haven't the energy to try and recapture it all, so suffice to say we met someone today who just got out of his 3 month cast from the same condition and surgery. it was miraculous to behold. and by miraculous i don't mean devoid of visible restructuring, re-shaping, etc. but i do mean that for how early the stage of healing, the leg appeared stable, ambulatory, highly functional, and well within limits of "normal" appearance. for a woman perhaps the concern will be deeper from a cosmetic viewpoint, but i am ecstatic and am very comfortable with saying sofie's leg will be beautiful.

on a lighter note: she ate good portions of solids today!

--geoff

well..

...nothing particular today. sofie is recuperating from methotrexate introduced intravenously, now likewise being flushed from of her system. the methotrexate takes about 4 hours to administer. flushing takes 3-4 days.

here's what's basically involved in chemo:

essentially the body is subjected to controlled poisoning to kill off those nasty microbes that resulted in cancer in the first place. the poison (chemo) must then be flushed from the system, otherwise the patient would die from, well, poisoning. in the process, vital microbes are simultaneously killed. the chemo brings the patient closely as possible to a "safe" brink of death just in time to be flushed of the poison. the patient then waits for the body to regenerate just enough vital microbes for the process to begin again. this is repeated over and over and over and over, all based on statistical protocols developed over the last 40 or so years. "statistical" means that these treatments are best guesses based on observation of indirect results, not direct observation of the chemo actually doing what is supposed. remarkable how much faith we exercise in statistical data, but thank god for all those doing the research over the years and currently! sofie's own data is being submitted to a national data base for ongoing research and analysis.

for those who don't know, over the course of the last 100 years or so the chemicals (chemo) now used for these treatments were discovered quite by accident from bellicose (look it up) applications.

--geoff

courage

another in the ever growing history of courageous moments: sofie finally let damon see her lovely bald head. so charming they both are.

nausea

listening to ben folds solo acapella remake of his own "brick." wow, beautiful. damon and sofie share fabulous tastes in music.

just a quick update: sofie responded more negatively to the methotrexate (an historical derivative of...mustard gas!) this go round, in fact nearly as much as to the more virulent cisplatin. her body hurt all over and she ultimately threw up from the nausea experienced throughout the day. however, good news: her very kind and enjoyable nurse, mitch, was able to get on top of it. to give you some idea of some of the medications involved, i quote sofie: "i love morphine." (yes, we've had the conversation regarding opiates and potential addiction.)

--geoff

sobering conversation

well, here at the hospital for one of sofie's final chemo rounds pre-surgery. this round is methotrexate, the effects of which have proved slightly less nauseating heretofore than others. we hope the same holds true this weekend.

damon, sofie's dear friend, is here along with me, dad. bonnie is with her incredibly kind sister, jessica, for a session at the temple. grandpa turner came by for a while and brought his famous clam dip (if you knew how yummy it is, you'd wish you were here too!) he will return later with grandma turner. we are incapable of expressing the depth of our gratitude for their support through these challenging times. nevertheless, thank you so, so much, grandpa and grandma turner.

we just had a sit-down with dr jones who will remove the tumor and execute the treatment decided upon. we went over treatment options and time line for her surgery:

first of all, tentatively, and probably, the surgery should happen on or near dec 28. sofie sort of made an impromptu decision during the discussion to forgo a trip she had been considering to new york with her english class that was scheduled around that same time. she feels she probably wouldn't have energy for all the activities anyway and just wants to get on with surgery which would have been postponed otherwise to accommodate the trip.

the discussion with dr jones was a harder one than i had anticipated, the hardest for me since first receiving confirmation of the diagnosis. sofie, who has had her share of difficult news lately, over and beyond what she's dealing with medically, said simply, "i'm used to hard news by now."

turns out a procedure which i had taken for granted as de facto may not be so de facto after all. the procedure in question is that of metallic replacement for a large portion of the upper tibia and knee. there is much to say which i may not at this point, but suffice that dr jones indicated amputation is not necessarily a wrong option in some cases. moreover, the procedure i assumed, as complications occasionally arise, can lead to amputation. i have a strong sense we will almost certainly proceed with saving the limb (metallic inserts replacing bone), but the conversation was most sobering.

that said, sofie is generally ok even emotionally despite the conversation, and so am i. i worry for some who have so much on their plate, but i trust heavenly father will provide. i anticipate we will continue to deal with our emotions as we encounter them and that heavenly father will continue to provide strength one to another, between each of us, and together so that we come to places of peace moment to moment, day by day.

so god bless all of us during this holiday season. i love all of you, and i love sofie. lastly, thanks to her mother who is experiencing hardship beyond belief. god bless such a mother who deserves nothing but love and support at this time.

--geoff

Biggest Surprise! November 21st

Today we presented Sofie and Clara with a long awaited surprise. They had NO CLUE. We told them to get ready for a night on the town. Then at 5 pm we sat them down and gave them 2 gift wrapped boxes with front row tix to Season 5 SUTUCD tour... last show of the season! These tix came with back stage passes to meet the dancers!!! What a show it was... WOW! Three hours long and then an hour meetand greet with the dancers. They knew Sofie's story because a friend of mine had gone backstage in SLC with a big "Get Well Sofie" banner that all the dancers had signed when sof was in for chemo. So Sofie took all the dancers her black and white pointe photo signed with a thank-you to each dancer. They were all so warm and receiving of her. Felt like we were with family. Sof practically filmed the whole show on her phone last night and we will post our photos!! Sooooo fun! How could Season 6 be any better than "FIVE ALIVE"!!!! Bonnie

PS. Thank-you Tami Larsen for the back stage passes through your contact.. RANDI EVANS!!!!
PPS Thank-you Megan Maxwell for arranging this surprise and your gift to Sofie... her ticket!

November 20th- Clara and Sofie reunited!

Enjoyed our first full day with family and friends in Duvall! Got scolded by my dear high school friend for not blogging daily! So... just wanted you all to know that if I dont blog a day or two it means that Sofie is well and not sick! Yesterday was definitely tiring for Sof but she slept in this morning and had a good day. She visited the dance studios of her cousin Clara and watched a video of Clara playing "Peter Pan" at 2009 Spring performance. They both share a love of dance!

In just a few more days, Dancer's Workshop is putting out the dance calendar with Sofie on the cover, playing "the Stork" on pointe. Very excited for that. It's a fundraiser that DW is putting on for Sofies wellness fund. If anyone wants a copy just leave a comment on this post and I will earmark and ship a copy for you. The photography is black and white by Zack Rosser and it's beautiful!! Bonnie

November 19th-Sleepless in Seattle!

The excitement is more than we can handle! Upon arriving at Aunt Jennies home in Duvall, Wa, Sof snuck into her cousins room and hid under the covers. Clara (fav cousin ever) had no clue we were coming. Her mom told her to go clean her room at which time she FINALLY discovered Sofie and began to sob joyous tears! It was the reunion of all time. Gillian (10 yrs old), another cousin also stood there weeping at the surprise. Half an hour later, Olivia(13 yrs), came home. Sof hid again in her bed and another BIG surprise ensued. Needless to say we are in "cousin heaven" out here and plan to stay for a long week-end. Bennie(7 yrs old) is performing his Michael Jackson moves like crazy and we are all amazed!
Sof's blood work is very compromised and lower than ever but we dont make any moves without talking to her treatment team first. It's all about the mask, sanitized hands, and staying away from sick people. Her platlettes are very low which means her blood cant clot well on its own to stop bleeding. If she has "a bleed" of any kind which is uncontrollable, she has to get a blood transfusion. On the flight to Seattle, her nose began to bleed. 45 minutes later it finally stopped. Oncology likes to get a phone call after 10 minutes. Mid flight, we couldnt do that, but called as soon as we could. Luckily the bleeding had stopped at that point. We definitely prayed before we left that all would be well as she enjoys this joyous occassion with family. We continue to learn a lot about this disease and feel empowered in that. Bonnie

November 12th

Sof rested up today because she had a big night planned. She went to see the upward basketball game that her boyfriend coaches (Damon Smith). Then she went to his house for dinner. Damons mom is a dietician at the hospital and she is very adamant with Sofie about eating lots of calories and gaining weight back. She is 10 lbs down.... so, Sofie got homemade pizza and chocolate cake tonight! Lisa I have no clue how you got her to do that. I scolded her that she would never eat that way for me. Then again, when she was 3, I had to have my neighbor give her medicine for asthma when she wouldnt do it for me!! Now she is having a sleepover with Brooke Fallon. She just dropped in to grab something and reports that she is feeling well. She even wants to go to 6th and 7th hour tomorrow at school and then to the boys vs girls vollyball game. My prayer tonight is that she stays healthy for the next 2 weeks so that she begins her next treatment on time. So far she has not had ANY secondary illnesses if you can believe that.... in the midst of all the crap that is out there. THAT is the power of your prayers in her behalf. We are so blessed with your love. Bonnie

November 10th

Amazing, this journey, emotional, long and at times very slow. I thought we had a good day yesterday and we did. Sof is mostly on the couch, still weak, but eating more and drinking more. Her brain is foggy but still works well. She cant read (too much focus), so I read her letters to her. We played cards til midnight. I walked her to her room, tucked her in, turned out the light and went upstairs. Twenty minutes later, she came slowly back up the stairs, heart broken, crying, and melted in my arms. And then she talked. Talked about what is was like to have cancer, the loneliness and melancholy. Missing the ordinary.... waking up to an early alarm, seeing her teachers, having her hair, being a part of her friends lives instead just them being a part of hers. No one asking her how she is feeling even though thats the appropriate thing to ask.

She spent hours yesterday looking at prom dresses. Its not til May. But May is when she might be over this so she is thinking to that day. She needs things to look forward to and for the first time expressed dread in going back to the hospital again. This is when the words of the doc came back with force, "this will be the marathon of a lifetime, it will be long and hard, long and hard."

I took her back down to her bed, got in with her, rubbed her back, and fell asleep. Bonnie

November 9th

Several of you are wondering when sof and I will be home. Its 1 pm right now and we are still in the hospital. Sofie is napping and Im waiting for the social worker to bring me some paperwork. Sof just asked me to get in bed with her so you know what that means!! Im going to sleep too! Anyway, they havnt taken her off of the iv yet so we still have to jump thru a few hoops to be able to leave. After that we have to go to my room at Ronald McDonald and clean it. We will be driving home and probably arrive late tonight!! Bonnie

November 7th

Sofia's day today has included sleep, sleep and more sleep. In order to combat the sickness, she has to be on around the clock anti-nausea meds. So in return she sleeps. She awoke this morn at around 11 am, was only awake for an hour or so, then slept til about 8:30 pm. Awoke long enough to ask for more medicine. Damon has been here since yesterday, spent the night in the lounge area in his sleeping bag! Tonight, I got to meet Cheryl Hobbs, a 21 year old osteo sarcoma patient from Preston. We had been following her blog since Sof was first diagnosed so it was so great to finally meet her. She is in the room right across the hall from Sof and this is her 2nd to last treatment. She had a 10 lb tumor in her left femur. She is a beautiful girl with a wonderful spirit. We are very priviledged to meet special people like her during this time! Bonnie

November 6th

We are back in the hospital now. Its 6 pm and Sof's chemo drip just started. Damon and his mom Lisa Smith are here. Damon, Sof and Daddy G are playing cards. Last night Sof and I spent all eve at Gateway eating sushi, chocolate, icecream, and vanillas steamers. Shopped American Eagle, Barnes and Noble and of course, Build-a-Bear! We stayed in a darling bed and breakfast. She got a new journal and finally started to write about her cancer. We had a blast together. If this chemo session is anything like the first, she wont remember the next week so we are enjoying her while she is still coherent.
Bonnie

Post from sister Hallie age 8

Complamants for Sofie by Hallie Wilcox (no edits)

You are a very beatiful dancer
You are soooo beatiful
I absolutely LOVE your personality
You are a great sister
You drive very well
You warm my hart
You make great choices
You are very good student in school because you always get A plusses
You are very brave aspecailly when you have cancer
I want to cry for how great you are

November 3rd

Sof and I are back in Jackson. She was able to go to Dancer's Workshop and watch Hallie dance. We took tons of photos and became a little emotional watching her little body become so disciplined at the bar. Today we will go back and watch Sydnie. So good to see Jeff. He picked us up from the airport. He has been tremendous at home with the girls. I came home to a clean house and an organized system!! Im very pleased with all he has done through this. His love for his girl collection is very strong and his emotion toward Sofie is ever present. As a family we are excelling right now and what a blessing it is!! Bonnie

November 1st

Sof and I are leaving hospital tomorrow afternoon to come home! We had a great day. My parents, sister and her husband and kids came. They brought in a full keyboard so that my little neice (Katie 13) could perform an original song she wrote for Sof. There wasnt a dry eye in the room as she sang. Sof hasnt been emotional since her hair fell out so it was good for her to have a good cry tonight. What a beautiful song written for her called "Fly Away". Jason Celaya spent the whole eve here too. What a wonderful friend! Sof, Shantelle, Brookie and I are watching a late night flick now, "Seventeen Again". Home tomorrow, back on Thursday. Cisplatin next treatment. Maybe her body will tolerate it better next time, we'll see.... Bonnie
PS the slide show has a technical difficulty! You have to see the 1st three pix about 4 times thru before all the pics come up so be patient, there are 13 photos!

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

A Powerful Blessing

Sofie received a powerful blessing from her Grandpa Turner last night. Without crossing sacred boundaries, we wish to share that her Grandpa felt impressed to tell Sofie that she will fully recover. We thank Heavenly Father for this wonderful gift and comfort, and for the faith of righteous men in Sofie's life.

I Am Not My Hair

Sofie has embraced this song which was introduced to her by a close friend. We think it's beautiful, just like our Sofie--who, by the way, has fabulous hair and will have again once we get through this powerful ordeal. (If you want to take a listen, which is highly encouraged, you may wish to pause the music play list embedded at the bottom of the page. Otherwise both play simultaneously, and that sucks, despite each song on its own being the essence of all things groovy.)

Sofie and Brooke

Brooke and Sofie (Bros)

Travel Day

Today is our big travel day, just me, Sofie, and her little siamese twin, Brookie Fallon. Jeff and the girls will join us when Sydnie gets back from her Teton Science School trip. We decided to drive so I can leave my pilot in Utah for the duration. It will be a fun road trip with the twins. I'll have to post a picture of Sofie's best friend and attending angel. She will be right there in the hospital with us all week. They call each other "bros" and thats just what they are!! We are surrounded by love and the faith and prayers of many, so here we go on our new journey..... thank-you so much!!

Best time of the day...

Wait on the Lord, be of good courage and He shall strengthen thy heart. Wait, I say, on the Lord. Psalm 27:14

Primary's called. We will be leaving town on Tuesday. Sofie will begin a process of tests beginning at 10 am on Wednesday. MRI, bone scan, echocardiogram, hearing test, and a minor surgery to insert central line. Chemo starts on Thursday. 5 days of chemo. She hopes to have a blast tonite... theres something special happening with one of her friends that she's been invited to. Tomorrow night... closing night of Grease, her dance teacher is playing the lead so we are excited!! Sunday we will be in church!! Bonnie

Early AM

Beareth all things, believeth all things, hopeth all things, endureth all things.....

1 Corinthians 13:7

Dispelling confusion

Blogs are so good for getting out firsthand info! So here goes. Sofie has osteo sarcoma, a tumor below her left knee. Mid August she started coming home from the Steakhouse with soreness and swelling. We began to ice and elevate! As she showed no improvement we went to a doc down in Ut where she was spose to be dancing. Her x-ray showed her little info. She referred us back to Jackson. We saw Dr. Khory (love him). He also had difficulty getting information from original x-ray. He sent us to radiology at hospital. After looking at 2nd x-ray, he was somewhat troubled by it and made an appt for MRI the next day. After reading the MRI he referred us to Huntsman for a 2nd reading of MRI. He knew what it was and so did we.... that was an emotional day. Luckily we got in the VERY next day at Huntsman. Dr. Jones read the MRI and told us what it was before sof even got the biopsy or pathology report back. The next day we got the biopsy. Everything happened fast. But what we know is that 20 years ago, doctors would often just take the leg. Times have changed. She will be in chemo 3ish months. Then Dr. Jones will go in and get the cancer out, replacing much of her tibia with steel. He will also replace her knee. After surgery, Sof will have to go back on chemo for approx 5 more months so that the cancer will have less a chance of coming back. Because osteo sarcoma likes to show up in the lungs, the chemo will have to be systemic, treating her whole body. Sof will definitely lose her hair and become very sick. Children and young adults under the age of 30 are stronger at fighting the chemo process. There is a marked difference once you are over 30. If there is such thing as being a good candidate for chemo, Sof would fit that profile. She is strong, fit and positive. She was online looking for hair today something you would never picture your teen-age daughter doing, ever, but like I say, she is just rolling with this and feeling your love. Please leave any questions you may have by clicking "comment"

First news from chemo doctor at Primary Childrens

Its 11:10 am on Thursday.... finally got the call from Sofie's chemo doctor. Her name is Dr. Wright. The reason why its taking time for them to get back with us is that they still need to schedule another MRI (the first one was just of her knee) so they can see her entire tibia. Then she has to get a bone scan to make sure there is no more cancer in any other of her bones. They can't conjecture on her chance of cure until they have that information... I guess that was a little blow as we didn't realize they needed even more information to give us a definitive prognosis. They will set up those procedures with radiology in Primary's looks like the beginning of next week. We will have an exact date tomorrow. Sofie decided not to go to school today. I huess there s a lot of illness going on that she cant be exposed to so she is working online today. Thanks for your love and prayers. Bonnie

My son, peace be unto thy soul: thine adversities and thine afflictions shall be but a small moment, and then if thou endure it well, God shall exalt thee on high, thou shalt triumph over all thy foes.

D&C 121:7-8

thoughts from a father in utah

wow, everybody. so here we are. how to talk about our angel...

as dr jones confirmed the powerful news last thursday, he turned to sofie and said, "this is life changing." i kept hearing the word "life," "life," "life," as we absorbed the news. her dear mother, her wonderful mother wanting so to comfort. our dearest sofie processing the news with complete equanimity--rightly emotional, open, and still somehow more powerful than the news. that is our sofie. completely unselfconscious, completely in the moment, completely alive, completely herself. that is her strength.

i adore you, sofie. i've said for years you and joe came to save me, but this is way beyond the call of duty. statistically you are now quantified as one in three hundred thousand, but we all know you are one in a million.

i think of my favorite pictures of you as a little one: in the first you are lying on a carpeted floor, eyes closed in mock sleep, and in the next eyes wide open and full of perfect mischief. thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, thank you, forever. and forgive me for embarrassing you.

first blog

Just getting acquainted with this blogging business!! This this the first blog. Just short and sweet. Sofie is having an awesome day. First day back to school with her new schedule! She goes to school at 10:30, goes to 4th, lunch, 5th, and 6th. Core classes are online so the only classes she takes at school are spanish 4, psych and art. Perfect! Still waiting to find out when she checks into Primary Childrens. But for now, really enjoying life as normal!! Well, you know, kinda normal..... Sofie hates exclamation points so I'll try not to use too many, yeah?