Sofia Huntington Wellness Blog

Port Removal

2010-06-15T10:55:00.000-07:00

Sofie left last night with Bonnie, Sydnie and Hallie to Salt Lake to finally get her port out! She stayed the night with Daddy G and headed to the hospital this morning at 11am to get started. She will have an audiology test, CT Scan, Bone Scan, and an X-ray of her new leg. She will be released later today and will go back to spend time with Daddy G for the night.

Tomorrow she will head into the hospital to have her port removal! This is a same day surgery, meaning she can leave after it is over. More details on the procedure to come.

-Megan

A Message From Duvall Performing Arts

2010-05-31T14:30:00.000-07:00

This past weekend we had the privledge to finally introduce our dancers to Sofie! Our students have been working hard all year to put on our end of the year production called "I Hope You Dance" for Sofie. Thoughout the year they heard about Sofie through pictures and messages and this weekend they finally got to meet her. She came into the studio on Thursday night, and the all the little dancers acted as if they had seen a movie star. They all surrounded her with hugs and looked up to her with such a sparkle in their eyes. It was so amazing to see all of the people who attended this production. Bonnie, Sofie, Sydnie, & Hallie all drove out on Thursday and Daddy G and his brother Jason came out on Saturday to see the show.

The performance told the story of Sofie's journey over the past year and also showed different paths Sofie could follow in the future such as performing on Broadway, being a judge on So You Think You Can Dance, or becoming a choreographer. In the final scene, Sofie got to go up on stage! All of our students came out and we performed our finalle to the Leann Womack song, "I Hope You Dance". There was not a dry eye in the room...including Sofie's. (we even had some of our little dancers crying) After the show, audience members came up to Sofie and told stories of family members, friends, etc who had also fought a battle with cancer. The little dancers even came up and got autographs from Sofie. It was so amazing to watch.

We want Sofie to know that no matter what, she will forever be in our hearts as we dance at Duvall Performing Arts. We cannot thank her enough for the impact she has put on our community. She has taught all of us to have faith, be postive and to never give up on anything. Our students have learned so much from her and have seen how Sofie has not let this bump in the road keep her from being the person she wants to be.

Thank you Sofie for changing so many of our students and so many other peoples lives by just being who you are. You are always welcome in our community and studio. We love you.

Love,
Megan Maxwell & Duvall Performing Arts

May 17th

2010-05-17T16:38:00.000-07:00

Well I couldnt let too much time slip by before I blogged about the prom. Sofie went with damon smith and 3 other couples, brooke and bridger, gus and michaela, and bert and nick. All the parents were there at Ellingsons for the photo shoot and big send off. They went to osteria for dinner and were at the dance til about 12:30 am. I received a text at midnight from sof telling me that sof was crowned prom queen. What a moment of elation and celebration! And what a culminating event for Sofie as she knew 7 months ago that prom night would mean no more cancer!! She had a blast.

Bonnie

May 13th

2010-05-13T14:41:00.000-07:00

Sofie has been sick since her last chemo but today she was feeling some relief. She was able to go with the school to the dance performance at the center for the arts this morning, then go out to lunch with the dancers. Afterward, she had a blood draw, a couple of hours of tutoring and aquatic PT. Thats a pretty big day! She was laughing again today. Thats always a good corner to turn. She is super excited for prom on saturday! Also the regional track meet here in Jackson. Tomorrow night is the big dance performance.. New Dances New Choreography. We are really excited to see what the girls have come up with this year!

Next week we'll find out what Sofie needs to accomplish to be able to graduate next year! Forward ho!

Bonnie

"No More" by Sydnie Wilcox

2010-05-12T09:08:00.000-07:00

She let out a tear
It was no tear of fear
Not like that special boy
It was a tear of relief
A tear of belief
She was done
No more, drip, drip
No more
No more

I let out a tear
It was no tear of fear
No one would care
That i just sat on that chair
It was a tear of relief
A tear of belief
She was done
No more, drip, drip
No more
No more

IT IS OVER!

2010-05-09T17:34:00.000-07:00

6:35pm May 9, 2010

This is to announce that Sofie just finished her final treatment, is cancer free, and is now leaving the hospital never to return again for chemotherapy, god willing!

-geoff

Last chemo drip

2010-05-07T10:54:00.000-07:00

Chemo ended at 12:37 am. Im pretty sure I'll regret for the rest of my life that I left the hospital at 11pm. This was written to me today by Sofie's nurse who was there at that moment, Jami John Newman:
As I took down the last bag of chemo, she started sobbing. When I asked her if they were tears of joy, she nodded yes. "I did it. I beat cancer," she said. "Cancer wanted me to die but I beat it." Then she thanked me for taking care of her from the very beginning. Tears, I tell you... tears. Thank-you for sharing your amazing daughter with me.
Talking just a little with Sofie about it this morning, (it's 4:30pm now and she's been asleep all day) she described the experience as an almost supernatural feeling, like a type of joy she'd had never felt. (Tricia- am nurse, told me that intense tears lasted almost an hour last night) Then Sof said.... "and I know I will experience many more times like that again." I'm really glad she knows that because rehabilitating her leg will be the next challenge. Having gone through so much chemo though, I think it is a challenge she would take over chemo any day. Her PT said, there will be days that will be dark and despairing, when she will miss the old leg, the old life, and all of her old abilities. But the triumphs in re-teaching her new leg will be super ripe with joy. I think that's the type of joy Sofie experienced last night... while her mom slept.

Bonnie

SOFIE'S CHEMO TREATMENTS OVER AND DONE!!!

2010-05-06T22:59:00.000-07:00

the posting of this entry at 12:35am, may 7, 2010, marks exactly the end of sofie's chemo treatments. the final bag of chemo was administered and taken down by jami, sofie's favorite nurse, who, as irony would have it, also administered sofie's first round clear back in october. and here we are now.

right before the final IV came down sofie said, "the cancer wanted me to die; i BEAT IT!" and then, "i'm going to feel better now. i haven't felt good since september."

-geoff

Last Treatment!!

2010-05-06T11:41:00.000-07:00

We are in Pod D on the ISC unit, room 4423. I want to remember that because its my favorite pod and its actaully on ICS instead of the 3rd floor, overflow. Its cold and gray outside. Sofie is in good spirits today. Lots of joking around and laughter. She has been the sickest Ive seen her the last couple of days. Lots of secondary infections and side effects going on, on top of leg pain and loud ringing in her ears. She received a blessing from her Grandpa Turner yesterday after exclaiming she was fed up. So she is going out with a bang. She's now being treated for a secondary infection through her IV. (Random sidenote: She now has an enormous labradoodle (75 lbs) on her bed with her...) On her 2 day break, when she was her sickest, she refused to stay in bed. Unlike me, who would prefer to be sick in bed, Sofie prefers to be sick at the mall. So we headed out, did a little prom shopping, got lunch and headed to Dillards for a Lancome facial and makeover. It turned out to be the funnest (not a word, I know) day EVER. We ended the day at the movies and made it back to my folks home by 10 pm. We are hoping for a less intense treatment this time. For some odd reason, the pattern has been that the first 5 day treatment is the worst and the 2nd is considerably better. We will be driving home on Mothers Day! We expect Sofie to be sick for awhile before she starts feeling better, but the meds will continue to help.

Bonnie

PS Im going to continue her blog. Its become a journal of sorts and a record she wants to be able to pass down her her children someday. We will be chronicling her rehab on the leg and other progression she makes as she begins her recovery.
PSS Also, stay tuned.... Sofie is actually going to write on this blog HERSELF, very soon!

April 30th

2010-04-30T14:48:00.000-07:00

7 months ago when Sofie turned yellow after the first day of chemo and slept what seemed like way too long, fear set in. Deep fear. Yesterday when Sofie began turning yellow and drifting off, it felt different. The feeling was that she wouldnt stay yellow, she would wake up when she was ready, come back to her old self again and life would move forward. She used to be afraid of being alone... especially in the hospital when things got really quiet. I get the feeling now that she accepts the times she's alone a little more. It's just different. It is for her and it is for me. We've survived countless rounds of the same thing. Chemotherapy in.... chemotherapy out. And life goes on, and she turns pink again, laughs again, and gets mobile again. On May 9th, chemo will begin to become a distant memory. But lessons learned are etched on our hearts and minds and become a part of who we are. Cancer was not an obstacle. It was an opportunity to look past what we think life is and get to the nuts and bolts. Sof will never have to wonder who God is and what role he plays in her life. I wish I would have known what she has learned at 16. Half way through my life, I'm still playing catch up...

Bonnie

PS Hearing aides are in and she really likes them!

April 28th

2010-04-28T08:32:00.000-07:00

Im blogging to let you know that Sofie and I are leaving this morning. We are going to Logan for an afternoon appt with an audiologist to help Sofies hearing. The ringing in her ears has been relentless. We are ready for a solution! On Thursday Sofie starts a 5 day chemo round at Primaries. Two days after she finishes that one she begins her last 5 dayer. Its very strange to be at the end of this and starting summer like nothing ever happened. Brings back memories of last summer. Sofie had just got her drivers license and a summer job at Teton Steakhouse. It was last summer that Sofie completed a 25 mile pioneer trek with no knowledge that she had cancer! I remember doing Cache to Game Creek with her early in the summer. (she hiked 9 miles in chacos!). What a blast that was. When I look back at the last 9 months I realize that faith is a choice you have to make everyday, sometimes every moment. I still practice this now..... everyday, sometimes out of survival, sometimes out of joy. Sofie is much of my joy. She teaches me every moment and inspires much of my laughter. She also reminds me where I am missing the mark. We talk about life. We've had a lot of time to do that. We gain new insights and share them with each other. Many times I overhear Sofie sharing her thoughts with Sydnie and Hallie and helping them through their rough patches. She is very aware of what the experience of cancer has taught her. We are closing a chapter and opening a new one. It will take 4-6 weeks for the nausea to completely wear off after chemo. Can you imagine how she is going to feel when those effects have left her?? Like a rebirth Im sure. And a REAL chance to focus on her leg. I decided that living one day at a time may be a little more intense but I like this way of life. Looking ahead can be somewhat of a trap. The here and now is all we really have and its beautiful!! Ive got to finish packing. There will be more to blog from the hospital!

Bonnie

April 15th... HAPPY 17TH SOFIE!

2010-04-14T22:22:00.000-07:00

With great sadness I wont be here in Jackson for Sofie's birthday so if you are here in Jackson, go love on her for me!!! She was only 16 for 5 months before she was diagnosed. Once she started on her medications, she stopped driving. After the surgery and for 3 months following, she was in a cast. Without the cast she hasnt been able to bend her leg enough to drive.... however.... today, she pretzeled herself behind the wheel with her left leg up on the dash and drove to the high school in my car! Operation success. Dont know what the cops would say about her unique positioning behind the wheel but it was a huge liberation for her to drive again. Tomorrow she turns 17. She will be pronounced "cancer free" (meaning, no more chemo) 32 days into her 17th year!! And we are turning a corner and hittin the gym full force (the books too). Think Sofie can finish her junior year in one summer so she can march with the graduating class of 2011? We'll see!
Bonnie

April 11

2010-04-11T21:51:00.000-07:00

Sofie and I are back in Jackson. She sluffed off her methotrexate one day early so we left the hospital at around noon. Tomorrow we start up with physical therapy, tutoring, and her home health care nurse. She had a good day today, slept the whole drive but her nausea was under control. Onward and upward!

Bonnie

some thoughts today

2010-04-09T21:49:00.000-07:00

if we are not out of the woods, we are certainly at the tree line descending an arduous path with a beautiful valley in view. i look back at the humility of a mother and largess of grand parents earning, if not celestial life, certainly celestial eligibility. i've witnessed a daughter arrive from unspeakable places, entering the gates of sorrow to learn the process of emotional power. i've seen a 16 year old live her age while a sage for the ages.

and lest any believe cancer is the great master, let me swiftly disabuse you of that. i have mentioned in the past that while cancer may magnify all the normal stresses and strains and storms and hurts and hopes and feelings and troubles and emotions and and and and, it is NOT who we are, or who we have become, or who sofie is, or who she has become. i am reminded of the prophet who praises god for his weakness. cancer is merely the weakness of this life out of which greatness and strength are born.

god bless our cancer survival.

DONATA!

2010-04-09T21:14:00.000-07:00

Donata Trussell, the queen of all physical therapists here at Primaries has big goals for Sofie. She says that Sofie's scar tissue is in good shape. She will not require any manipulations. A manipulation is when they sedate you and tork your joint to loosen the scar tissue. Donata also explained that Sofie's response to chemo has been ideal such that she endures it well and bounces back. Both of these factors make Donata very excited to push the boundaries of Sofies capabilities with her leg. Her goal with Sofie is a 130 degree range of motion. This range would allow for biking. Up to this point we were under the notion, per doctor's information, that her maximum range of motion would be 90 degrees. My thinking is that the surgeon's have to be conservative in their prognosis based on the science behind the surgery and the outcomes they have experienced with patients. But an inspiring physical therapist will push those boundaries and help the patient listen to their bodies and achieve what they desire. One of Donata's teen-age patients with bone cancer phoned her some weeks back to report that she had gone downhill skiing for the first time! I think Donata was even caught off guard at this news!! Catilina had been a competitive downhill skier pre-cancer. Her last chemo was in September of 09. She had a terrible time with scar tissue and with chemo. But she had the desire and drive to ski. Sofie is moving out of the chemo stage, which was somewhat predictable and scheduled, and moving into the strengthening phase. It is no doubt exciting but we are also entering the world of unknowns and possibilities. This is when inspiration RULES possibilities. We are so lucky to have the best physical therapists working with Sofie.... Donata (Primaries), Jane (St. Johns) and Andy (All Body Therapy). We can hit this full force after chemo is officially discontinued. This is when she will start to fly!!! One day at a time..... closer to gaining mastery over a new leg. She said the other day, "Mom... I love my leg." It is considerably smaller and somewhat misshappen with a 14 inch scar but she loves her leg. It's that love that is going to inspire the healing and mobility we are already visualizing. We are very grateful. I LOVE INSPIRATIONAL PEOPLE!!! I love Donata.

Bonnie

April 9th

2010-04-09T12:14:00.000-07:00

After a tough hospital stay last week, this 2nd 5 day methotrexate has been easier... go figure. Sof is awake, happy and interactive. Yesterday she got another echocardiogram which indicated that the clot on her heart is gone! NO MORE SHOTS!! Such happy news for Sofie. She got to the point with her shots that she wasnt afraid of them anymore which for her was huge. Her anxiety with shots used to be high. Its amazing the transformation we make when we face and conquer a fear. Watching Sofie do this these many months has been a wonderful experience. Today Sof is going visiting around the cancer ward some of the other patients. There is a darling little 4 yr old girl across the hall with osteosarcoma in her shoulder. And 12 yr old Hannah is here again for infection. We brought our array of wigs for her to try on this time. Damon is back from Mexico and arrived last night. He will be with us til we drive back on Monday. Syd and Hallie are at the Hogle Zoo today with their cousins. Next week, Sofs treatment is in Jackson. I have to spend the day in Utah the first day so my parents are coming up to visit!! So excited. They havnt been in Jackson for awhile!! I cant wait to spend time with them.

Bonnie

Easter

2010-04-04T21:42:00.000-07:00

Wow. Blogging is getting harder being so much closer to the end!!! I just wanted to blog that Sofie has been asleep for 3 days. Not much to say!! We are still in hospital and will be leaving sometime tomorrow. We will be at grandmas for 2 days and back in on Thursday. Hope Sof pops out of her stupor long enough to enjoy all of her visiting cousins!

Bonnie

April Fools!

2010-04-01T14:00:00.000-07:00

I hate April Fools cause you're messin with peoples heads! Brookie just told Sofie her grandma died! Not cool! I told Sofie she was not allowed to do any "cancer" April fools jokes. She totally disagreed! So dont let her fool you today! We just checked in at Primaries for another 5 day visit. Then we ll have 2 days off and do another 5 days here. Jeff was able to break away today so he is here with us. The girls and I been in Kaysville since Sunday and had lots of fun. Sof stayed up way too late last night with cousin Katie and had a blast. Katie is 13 and quite a talented beat boxer! Syd and Hallie got to visit Lacey May Geddes' beauty parlor and get all beautified! And of course, shopping with all of my girls has been a blast because, well.... we are girls. We've had such fun! Happy Easter!

Bonnie

March 30th

2010-03-30T14:07:00.000-07:00

All 3 girls and I drove to SLC after spending 7 hours in the ER at St Johns. Sofie had chills and pain. After being released she slept the remainder of the day and through the night. We are now at my parents. Sof so badly wanted to feel normal the next day that she insisted she come with me and the little girls to the mall. Although I doubt she would say she regretted the decision, she became quite worn out and ill again. Went to bed at 5 when we got home and slept the night. Today she is enjoying a leisurely day on grandmas couch watching movies and playing games. One more day til we go back into Primaries for 2 more 5 dayers. My little girls will enjoy spring break with grandparents, aunts, uncles and cousins here in Kaysville.

Bonnie

March 22nd- Aquatic Therapy

2010-03-22T18:59:00.000-07:00

Today was a big day for Sofie. First of all, she had to wake up before noon! Her first "real" physical therapy was at 10 am in the therapy pool at All Body Therapy. Up to this point, she has had pt work with her at home and in the hospital with her range of motion only. In the pool, she got a full body workout along with using resistance in the pool to bend her knee on her own. The biggest difference is that at home and in the hospital, the therapist is bending Sofies knee using gravity. At the pool, Sofie is engaging her brain in the process by telling her leg to make specific movements and executing on her own. Big difference!! I was sooooo proud of the work she did today in the pool. After 30 minutes she was exhausted and barely had the strength to rinse in the shower. She shows a very quiet bravery as she attempts to engage her knee. I cant tell in any obvious way that she is in pain or that she is shocked or disheartened by her lack of function in that leg but I know she battles with both in a very subtle way. Mentally she is always moving forward.

Bonnie

March 20th

2010-03-20T16:21:00.000-07:00

Sof just got out of St John's hospital today so we have 11 free days in Jackson before we go back to SLC. Her remaining days in chemo look like this:
1st 2 weeks of April at Primaries
3 days at St. Johns
1 week off
2 more weeks at Primaries
DONE!!!!!

Sofie has had her cast off for 8 days now. She started physical therapy and has 4 sessions so far with Jane, Erin, and Matt. She is learning how to bend it. She has the potential to get it to 90 degrees. Today she achieved 45!! Doc says thats huge for only being out of cast a week. Monday, Sofie gets to start aquatic therapy with Andy and she is soooo excited for this. She loves learning about everything because she's really interested in going into physical therapy someday. Sof did very well on the doxy this time. She experienced some sickness in the middle of the night on both nights but she was sitting up a lot and had a lot of her friends around her.

Bonnie

March 17th

2010-03-17T14:56:00.000-07:00

Rough day. Sof is really sick. She was spose to have a lunch at Krogers with the gang but could barely move. She's been sleeping most of the day. It is so random when she feels good and when she feels crummy, no rhyme or reason. We are hoping her white blood cells are high enough to start another chemo tomorrow. Jane, physical therapist, is coming for her first home visit today. We are surely enjoying (and spoiling) this new leg. Lots of soakings and lotions and rubs for circulation. Entering St. Johns at 11 tomorrow.

Bonnie

March 15th

2010-03-15T19:16:00.000-07:00

Sofie's methotrexate levels cleared out of her body a day early so we got to leave the hospital on yesterday instead of today. Before we left, Sofie had resolved to go visit the 12 year old girl across the hall to try lifting her spirits. I had left the hospital Saturday night to have dinner with friends and when I returned, Sof was in Hannah's room in her wheelchair playing cards with her. We became acquainted with the family and had an enjoyable time. The next morning before we left the hospital, the nurse came in and told us that a recently diagnosed osteo sarcoma patient (female, age 9) and her family would like to meet Sofie. So we had the opportunity to meet another family and a darling little girl, a dancer. Shortly after, the nurses taught me how to give Sofie's shots in her tummy. The drug is different than hepron, it's called lovenox.

Today, Jackie Kroger gave Sofie her shot. She's a pro because of her own experience with a diabetic daughter. It was good for Sofie to see that Jackie's administration of the shot hurt as much as mine. Good for me to know, I thought I just stunk at it. Sof had a busy day. Her Uncle Eric and Aunt Becky came, nurse came, teacher came and massage therapist came. Ahhhhh! Then she left with Damon to go to his families for dinner. I worked on getting physical therapy set up so they can get her bending that knee.

She enters St, John's on Thursday and will be there through Saturday.

Bonnie

To the sisters in my church ward

2010-03-12T15:24:00.000-08:00

I received your letters today. Sof and I have both received many gifts since September 17th, 2009. Every variety of gift imaginable and all of them meeting the unique needs of our family in one way or another. The gift I got today came in your words, on a day that I had a pressing need to hear it. My sisters in the church are a crazy bunch of strong, faithful, women. Here is my letter back:

Dear Friend,

This past summer I did something that would forshadow events which were about to take place in my life. I went on a pioneer trek with Sofie. I think about that experience a lot. My whole life Ive thought, "Im glad I didnt have to be a pioneer." But recently I said,"Why couldnt just have been a pioneer. Their tribulation was to get from point A to point B. Connect the dots. Sure they experienced sickness and death but they were single minded in purpose and there was no confusing what their destination was... except when they came to yet another unexpected mountain pass in the distance. Lately Ive been feeling like the captain of my ship wants to jump board. The waters are too rough. Although I havnt forsaken my spiritual duties, I've been feeling a painful futility. Then I got your letters. Thanks for reminding me who I am, daughter of a King. The only other person lately who is capable of reminding me of that is Sofie. We are a lot like glue and we get isolated in a world of seeming unknowns. We ponder everyday because we HAVE to, looking to find what we DO KNOW and what we CAN CONTROL. I know God tests our endurance but many days I ask myself, "more??" Ive watched Sofie ask that question many times through her tears and the answer is always the same... "yes, more". Sometimes the spiritual pain is unrelenting. (and I never knew there was such a thing as spiritual pain.) Our lives have brought new meaning to the phrase "gospel in action", when the trial becomes so heavy that its easier to stay on your knees than get up and live. Thank-you for your words. They were powerful.

These are some of the beautiful words written:

"I have again, in awe, watched you confront Sofie's challenges unflinchingly, you do what you have to do, and I see your faith and trust in the Lord as your foundation that keeps you afloat and moving in the right direction."

"God, I think, blesses the world to continue spinning, he wills hearts to continue pumping, wills lungs to continue breathing because he sees the beginning from the end, because he knows the sun will rise one day on a perfect morning."

"Not a day goes by nor an hour when I dont think of you and the hurdles you are leaping over, you are surely an olympian. Soon these events will end and you will be victorious, with Soife on the podium of life."

"I realize it is a tremendous blessing to be able to sit in the celestial room and pray for my dear friend and her family."

"He suffered for more than our sins, He suffered for our pains, pains of our own sins, for the choices of others, the challenges life presents, the circumstances that befall us, the unhappy turns we come into, the physical discomfort we feel."

"Ours is a loving Father who will, if necessary, let come to each of us some harsh life experiences, that we might learn that His love for us is so great and so profound that He will let us suffer, as He did His Only Begotten Son in the Flesh, that His and our triumph might be complete and full." (Maxwell)

I hope you know that your letters touched me and that Im grateful that you are my friends.

Bonnie

March 12th.... CAST OFF!

2010-03-12T13:17:00.000-08:00

Big day for Sofie. The cast came off at 8am this morning. She is walking on it as well as she was with the cast on. It is little and itty bitty but it is perfectly proportioned, not wonky. I think that even surprised the doc. She cant bend it. Thats where physical therapy will come in. There is a 12 year old girl across the hallway from us that has the same thing as Sofie. She got her cast off three weeks ago. We can hear her crying day and night. She has to be forced to walk and so she'll walk twice a day in the hallway and cry and cry. It is heart breaking. Sofie's going to try to go visit with her and try to make her happy.

On another note.... Sof got an echocardiogram this morning. They found a clot at the top of her heart where her catheter goes in. So they've put her on a regiment of shots to her tummy. She'll have to have 2 shots a day for the next 2 or 3 months. She just received her 1st shot a few minutes ago. It's a treatment that thins her blood and keeps it thin.

Bonnie

Casper Wyoming, March 10th

2010-03-12T13:10:00.000-08:00

Sof and I decided to take a last minute trip from Salt Lake City to Casper, Wyoming. We left Tuesday evening at 6pm, drove 4 hours to Rawlins, woke up and drove 2 more to Casper to watch her dance team compete at state. She was really sick but determined to do it. We are so glad we went. We were able to watch the competition and then go to Outback Steakhouse with the team and parents. We got out of Casper at midnight and drove 6 hours, getting back into SLC at 6 am and checking at in the hospital at 10 am.

CRAZY!!
Bonnie

the cast comes off this friday!

2010-03-07T13:54:00.000-08:00

dr jones, the surgeon who replaced sofie's knee, just visited (with sofie fast asleep) and informed us the cast almost certainly will come off this friday, mar 12!

hooray!

(sofie has been a little anxious about this event, but we are fully confident she will revel in the exponentially increased mobility while anticipating the work ahead.)

-geoff

sigh!

2010-03-07T11:59:00.000-08:00

blogspot changed its password protocol, and, wonderful service that is Google, nobody knew, OF COURSE! so i haven't been able to get in and blog since forEVER. it is SOOOOO buggy, and we weren't able to do something simple as change the password, because that function is itself buggy, ugh. anyway, somehow, and i honestly don't recall exactly how, the password issue is resolved and voici, here i am blogging.

SO, this weekend has been pretty ok and even fun except for sofie's had chronic and significant stomach pain. at first morphine helped, but over time resistance built up and morphine wasn't touching it. we then tried oxycodone, which miraculously helped--miraculous because we don't typically think of oxycodone for stomach discomfort. the only problem was that sofie verged on becoming over medicated, what with all the other drugs used for nausea that act bilaterally as sedatives. it felt touch and go for a short while because of slowed heart rates--nothing too severe, but certainly cautious concern. anyway, long story short, all's well.

and then happily, sofie's wonderful friend, tasha hobley aka vu, came and spent last night. anyone who knows sofie knows how dearly she loves her friends and they her. she misses them terribly while she's here in utah, especially through these extended periods, so the companionship of close friends like tasha is an emotional godsend.

and then, if that weren't fabulous enough, sofie's neato friend, kyle fisher, flew in from jackson for a whirlwind visit. we've played cards and joked around. just a great, great kid with a fabulously enjoyable sense of humor.

word.

geoff

March 2nd

2010-03-02T15:45:00.000-08:00

Sofie and I are leaving town tomorrow, March 3th and will be returning to Jackson on March 16th

February 26th

2010-02-26T19:26:00.000-08:00

Long time no blog. But alas, I am home alone. Jeff, Syd, and Hallie left for hawaii this morning. Sofie and I just had a nice dinner with the Ellingson's and Sofie is spending the rest of the evening at Damon's. Our break has been a good one with the exception of the last fews days. Sofie got a bad case of thrush, a common side effect of chemo, which caused her the "worst sore throat of her life". We are also going through the vicissitudes of emotional upheaval related to realities of life with cancer. It's crazy how Sof manages her emotional world so well and then boom, it hits out of nowhere and she's in a funk that feels paralyzing to her. She articulated it as "an emotional pain she cant describe that makes her whole body hurt". Last night was a biggy. It's not necessarily unfamiliar territory anymore, so we realize that a "good cry" is in order and we move through it. I reminded Sofie that it was only temporary and to give herself permission to feel it and move through it. I held her and rocked her until her tears dried up. She called for her Uncle Eric at 1 am for a priesthood blessing and felt immediate relief afterward. Then we enjoyed his sweet company at the wee hours of the morning, eating a big bag of sour jelly bellies he brought with him.

I also wanted to blog about the evening we spent at the Center for the Arts fundraiser for 2 young adults with cancer (including Sof) from Jackson along with the unveiling of a film about young adulthood cancer sponsered by "First Descents". It is a kayaking program and expedition for young adults with cancer or in recovery from cancer. There was a silent auction and performances by Contemporary Dance of Wyoming and a local improvisational comedy troop. Fantastic night.

Sof and I are on our own til we leave for SLC again on the 4th of March (next Wed).

Bonnie

Feb 16 Post St. John's Hospital Visit

2010-02-16T17:28:00.000-08:00

Here is the update! We loved our stay at St. John's. We started in the oncology ward with Judy Bayse for the first couple of hours. Then we checked into room 130 and stayed Thursday through Saturday. She only received one chemo drug ("dox") this time. It was far and away less intense without the cisplatin. Sof was so comfortable there and had the BEST nurses! She was surrounded by her friends from Jackson and that was a real treat for both of us. Sof had one night in the hospital that was heavy emotionally for her but like all of those times, they hit and pass. She has been in good spirits since and is comfortable here at home. Tonite she came walking into the kitchen on that leg with no crutches and I thought I would burst with happiness so see that sight. She was beaming. We still have 15 days left in Jackson. We are thinking about traveling out of town to go to Damon's away games this week-end!

Bonnie

Chemo Schedule

2010-02-10T20:41:00.000-08:00

Feb 11-15 St Johns

Mar 4-8 PCMC

Mar 11-15 PCMC

Mar 18-22 St Johns

Apr 1-5 PCMC

Apr 8-12 PCMC

April 15 (Sof's 17th bday)-19 St Johns

Apr 29-3 PCMC

May 6-10 PCMC

May 20ish bone scan, chest scan, and leg x-ray
May 21st- last surgery- port out!

Wednesday the 10th of February

2010-02-10T15:53:00.000-08:00

Sof and I have been home for 2 days. She is doing fine. We are entering St. Johns hospital tomorrow at 11 am. She will be in the hospital through Sunday or Monday.

Bonnie

Audiogram, Feb 5

2010-02-05T19:34:00.000-08:00

This afternoon Sof had her hearing checked to see if the last cisplatin treatment decreased her hearing. The result was that she did sustain more damage which put her at the borderline of needing hearing aides. The conclusion that her oncologist came to was to suspend Sof's next cisplatin treatment and just administer the dox. The audiologist initiated a conversation with Sofie which entailed showing her an array of the lastest hearing aides. We were a little caught off guard to say the least and werent to thrilled to have that conversation especially before we'd had the chance to speak with her oncologist. We were feeling derailed at that moment and emotions were right on edge. Our question was " do they just keep administering cisplatin until the damage is done and then suspend?" I guess I had assumed they would abort the treatment before it got to that point. We received 2 reports, one from the audiologist and one from the oncologist, the former saying the damage was permanent and the latter saying, it could come back a little with the suspension of the cisplat. We'll see when see in retested in 3 weeks.

So that is currently what we know on the hearing. On a better note, Suzy Malone and Lili Hall came to visit (Sofie's AMAZING cousins and gooooood medicine!) We figured out Sofies dates with her chemo schedule and if she stays on time, her last day in the hospital for cancer treatment will be May 10th. Then around the 20th, she will have her last chest and bone scan for awhile and go into surgery to take her port out. It seems as though there is an end in sight. I think todays news has sent Sofie into a deep sleep.
Bonnie

February 5th Friday

2010-02-05T09:58:00.000-08:00

The first discussion we ever had with Sofie's surgeon when he gave us the diagnosis was his recounting of a story of another one of his patients. After her surgery and imminent return back to chemo she said, "I would rather die than go back to one more chemo treatment." As with several things he told us, I was not only surprised at what he chose to share but at his candor as well. Being the type of person I am, I definately appreciated his direct style of honesty, but often times I couldnt believe what he was saying or that he didnt have the least inclination to sugar coat.

Sofie had one of those nights last night that reminded me with full force that the "medicine" her body is receiving in fact threatens her internal organs and life itself. Her suffering got so bad that at one point she turned to her Dad and asked him if this was what dying felt like. Anyone who knows Sofie knows that if she asked such a question, she genuinely wanted to know. She required more morphine last night than she ever has. By 2 am she was drifting to sleep.

Sofie has tolerated chemo better than I could have ever hoped and yet on a night like last night, we are humbled and keenly aware of the ugliness of cancer and the barbaric nature of its treatment. Sof feels better this morning. She feels relaxed and at peace. And so goes the highs and lows of this ultimately spiritual ride. Sofie is in good hands medically. She is also in Gods hands and is very aware of that. How is it possible to feel grateful through this? Many times this is my question. But God is in charge and everyday is another submission to Him and an attestment to His role. It's good for Him to be the orchestrator. That, I can be grateful for.

Bonnie

Bonnie

February 4th 2010, Thursday

2010-02-04T11:36:00.000-08:00

We always begin a new chemo treatment on Thursdays so here we are again, all situated in our room. Sofie gained 2 lbs last week due to the new med she is on and right now she is eating a chicken ceasar salad! So good to see her eating again. We enjoyed the 2 days we had off at grandmas and grandpas. We should be leaving to come home to Jackson on Monday. Tuesday and Wednesday of next week we will have off and then Thursday we will enter St John's for her first 5 day inpatient chemo treatment in Jackson!

After this current 3 week session, we will have 2 weeks off and do it again 3 more times. So..... its 3 weeks in 2 weeks out for 3 more times which means we are done end of May. The ONLY thing that would screw this schedule up is if she gets sick OR her blood levels are too low to start on time. In this event, it delays her another week which is added onto the end. So far, due to faith and prayers, Sofie hasnt been sick OR had blood levels prohibiting her from starting on time. Sof always feels pretty good her first day in the hospital because the drip doesnt actually start til around 10 pm.

We are looking forward to having her cousin Katie spend the night with us tonight!

Bonnie

February 1 2010

2010-02-01T12:05:00.000-08:00

We have been discharged but are waiting for the surgeon to come fix the bottom of Sof's cast which rubs and causes pain. Currently, Sofie, Hallie, Grandpa Turner and I are watching Alladin in the hospital room, just waiting. We have to check back in Thursday so it's not worth it to drive home today and impossible to fly home because of the cast. Im sure we will go to my parents. Good news is that it looks like we wont have to do the 3rd treatment of this round here at PCMC. St Johns has got orders from Primaries to be able to do it in Jackson. So instead of ariving back in Jackson on the 15th, we should be back on the 9th and have 3 weeks at home (4 days of which will be inpatient at St John's. It will give Sof's friends in jackson a chance to be more part of her treatment locally. We're expecting some awesome visits!!
Bonnie

Saturday, Jan 30, 2010

2010-01-30T19:54:00.000-08:00

Sof had a really good day, much more coherant. She seems to have adjusted to the appetite enhancer and ate an In and Out burger for lunch, breaded shrimp for early dinner and Betos rolled tacos for later dinner. We are not used to seeing this. Everytime she ate today, I was compelled to take pictures! Proud moment for a mom I spose. She got quite a few visitors, Grandma and Grandpa Turner, Angela and Ellie Peterson, Aunt Tracy, the Vu family, Kimberly Lohner (her young women's president here in Utah) and Hannah Thomas (friend from Provo). Busy day!! Good day. Daddy G and Sofie are playing cards listening to oldies.

Bonnie

NEW CAST!

2010-01-29T13:03:00.000-08:00

Sof just had her old cast taken off. The docs couldnt believe how fast her scar healed. There is usually a lot of discharge from the incision but she had none. It was completely clean on the inside! Her leg is tiny. Her quad is about the same size as her calf! Her cast is now neon pink. Her choices were pink, pink, and pink. Cast doesnt cover her foot anymore. Ends at her ankle. Doc said she can start bearing weight on her foot little by little and as soon as she is comfortable, (in as soon as 2 weeks), she can shed the crutches! The marinol might be working, as Sofie just asked me to please pass the baggie of fish crackers. Cant remember the last time she asked for fish crackers!!

Bonnie

January 29th

2010-01-29T10:09:00.000-08:00

Sof had a tough night. They finally gave her morphine and it essentially knocked her out. This morning she got more morphine as well as a new med scalled marinol. Its an appetite enhancer. She needs to gain weight and not lose any more. Her doc is coming today to put on a new cast. She can fit practically her whole arm down into the old one. Her physical therapist is going to work with her on strengthening her other leg and her upper body.

Bonnie

Thursday, Jan. 28th

2010-01-28T11:59:00.000-08:00

Sofies echocardiogram indicated that her heart functioning is back up! Havnt talked with her oncologist yet but Im assuming that the doxyrubison wasnt the culprit. Sometimes they see a decline in the heart shortly after a surgery like hers. So it looks like she will go back on her normal regiment of chemo meds.

Im here with Sofie, Sydnie and my mom and dad. Girls just finished watching "Coraline." That is a very creepy movie... more blogging to come Im sure!

Bonnie

PS. Jeff and Hallie in Monterey, Ca. with extended family.

January 27th Leaving town again

2010-01-26T20:25:00.000-08:00

Sofie and I leave Wednesday the 27th to enter the hospital on the 28th. She begins with an echocardiogram to determine if her heart functioning went down due to chemo meds or post surgery stress. Hoping for the later. This time we are taking Sydnie with us. Syd needed the opportunity to see exactly what the day in and day out of hospital life is like. She is under the impression that Sofie leads the charmed life of not having to go to school, not having a bed time, and getting lots of stuff. This will also take care of the problem of having to say good-bye to her, an event that always has a lot of emotional fall out. As for Hallie, she will get to go with us next time to have her own first hand experience too. We are excited for the road trip tomorrow because friend, Jason Celaya, got all of us tickets to his hip hop and contemporary dance performance at the Covey Center in Provo the night before chemo starts. Daddy G and Joe get to go too. Sofie is really excited.

This round of chemo goes til the 15th of Feb. We have a couple of 2 day breaks in between but we're not sure how we will spend that time. Before her surgery, we were able to quickly fly home on those small breaks but her cast prohibits flight right now.

Jeff and Hallie are going to Monterey, California tomorrow through Sunday so they will have a fun little break too!

More hospital blogging to come. Roughly about 24 hours before she re-enters the hospital, Sof begins to get nauseous just anticipating the chemo drugs again. The thought makes her want to "ralph". Not fun, but she takes it in stride.

Bonnie

January 24, 2010

2010-01-24T16:27:00.000-08:00

In case you wondered, no current news on this blog means good news. Sofie is doing well but I thought I would journal some thoughts....

Sofie is an athlete. Before dance became the predominant sport in her life, she was a natural born runner. She could out run any of the boys her age in a foot race. At age 4, she biked 14 miles on training wheels for the annual Kelly School fundraiser. She began racing on skis in first grade and in 2nd grade broke her leg when one of her tips got caught on a gate and yanked her leg backwards. She couldn't wait to play real football with an all boy team in 5th grade and could lob the ball long range right at her target. She hiked long distances at a young age too. She followed Jeff and I wherever we hiked. The year before her diagnosis she summited the Middle Teton and the Static without any visible signs of fatigue. For the past 2 years, she has raced in a kayak for the pole pedal paddle in great time. As a dancer, she has been in the studios 20 hours a week after school and on Saturdays pushing her body to better performance heights.

My husband is also an athlete. He has summited many a Teton mountain peak. I've lost count of how many triathlons, LOTOJAs, marathons and other races he's finished. He has mastered the Snake River in his raft, Togwotee on his snow machine, and the back country on his skis. He's traveled the Jackson skies in his paraglider. He's found himself in life threatening positions and has demonstrated the utmost grace under pressure.

I myself am not an athlete. I can snow ski due to a father who made sure he got his 3 young daughters out on the slopes year after year as I was growing up. I do, however, PROUDLY refer to myself as a walker. I love to walk/hike wherever, anywhere. I summited those 2 Teton peaks with Sofie and Jeff although I finished them looking a lot like an old worn-out lady. Last February I registered for a "walker friendly" marathon. I found out by the end of the race that I can get a much better time than I anticipated. I was able to run 15 miles of it. Who woulda thunk it? Last June I finished another one with my sister. I think that one was harder. The last quarter or so was somewhat excruciating. My large toenails have still not recovered.

So when Sofie's surgeon gave us her diagnosis he used an analogy that we could all relate with. He kept saying that her treatment would be long and hard. Although I appreciated his candor, it felt very ominous. He said it would be the "marathon of her life." Had I not actually run a marathon, that analogy would have been completely lost on me. I still remember what the 18th mile felt like, the 22nd, the 24th, and certainly the last. They are the longest and hardest. While running in those races I constantly wondered if I would finish. You cant know what your body is capable of until its pushed to its limits.

A few nights ago, Sofie said in a moment of distress, "I don't feel like a person anymore, Im just 'cancer'." The night before she left Jeff and I a note on the fridge after midnight thrilled that she had come upstairs by herself to get OJ and yogurt by sliding on her butt. She signed the note, "Love, Cancer." No doubt, cancer strips almost everything away from you, even after you think it's taken away all it could. I didn't have an answer for her. Her feelings could not be argued with. Finally I replied, "You're right, you've been stripped of a lot, but you have absolutely no comprehension of what God will replace it with." When Sofie asked her doc if she would ever be the same he said, "No. You will be better." We are in the second half of Sofie's marathon and she is tiring. She is weary of her illness. She now recognizes that there are times when she is running alone and has has to draw on her own strength at those moments. We are running her support but cant endure cancer for her. No news on the blog simply means we are enduring the last half of the race. Everything is going predictably by scientific standards. How grateful we are for that, everyday, so grateful for that. It's exhausting and at times crushing but she's in the race being cheered on by friends and family who visit with her day to day. She transitions back and forth between silly Sofie and stoic Sofie, always replacing tears with giggles. It's my privilege to be her mother and learn the most important lessons life has to offer. We are finishing with the life support of many around us. Thank-you for serving in our time of need. May we be in a position to pass it forward.

Bonnie

Sofie is being a very silly teen-ager

2010-01-18T14:45:00.000-08:00

When Sofie is feeling well, there is definitely an emotional release that takes place in the form of EXTREME silliness and giggles. If you EVER have the opportunity to be in her presence when this occurs, you might find that you will have great difficulty not becoming VERY, cornily, silly yourself. Its very infectious and quite liberating!!!

Bonnie

I LOVE YOU by Sydnie Wilcox (Sofie's 10 yr old sis)

2010-01-16T18:30:00.000-08:00

I squeezed a couple of drops of hand sanitizer onto my hands as I walked into the room. Sofie looked helpless, as she lay there asleep. Her legs were restless because of the pills she had to take. I rubbed her legs so they would relax. As I stared at her I slowly smiled. "I love you," I thought to myself. "Hi Sofie, " I said as I reverently grabbed her hand. As I stared at her, I started tearing up. I started crying and my friend snatched me into a big bear hug. Her tears slowly rolled down my back. We left my sister to sleep and left the room.

We wiped our eyes and went for a walk. Grabbing a cup, we filled our glasses with ice water. As we started sipping our water, we saw a cute little girl and started talking to her. She was only two years old but she looked like an infant. "Why are you guys here?" her Mom questioned. "My sister has cancer," I explained sadly. "I'm so sorry," she exclaimed. "We're going to get through this together," my friend Brynlin promised.

We said our good-byes and left. Then we saw an adorable little black boy with a cast going down his arm. We found out he got his thumb slammed in the door and had to get his thumb cut off! That's when I fully realized that this experience was a reality. I never knew that life could be so hard. Brynlin and I forced ourselves to walk back to the crowded hospital room where Sofie's legs twitched and pain shot through her body. I squeezed a couple of drops of hand sanitizer onto my hands as I walked into the room. "I love you, Sofie."

Mosiah 24:14

2010-01-15T11:14:00.000-08:00

And I will also ease the burdens which are put upon your shoulders, that even you cannot feel them upon your backs, even while you are in bondage. And this will I do that ye may stand as witnesses of me hereafter, and that ye may know of a surety that I, the Lord God, do visit my people in their afflictions.

sofie gradually feeling better!

2010-01-13T21:26:00.000-08:00

so, bonnie got some advice that upping sofie's antiemetic dosage under some conditions may be a reasonable plan of action, so last night she did. sofie had been heaving after days of persistent nausea when bonnie gave her the augmented dosage, and voila, sofie felt better and slept well. hard to know if it was coincidental (since this is about how long the nausea persists coinciding with a typical length of stay at the hospital), but who cares?! and if i understood sofie correctly, by and large she felt pretty ok today! thanks again for all your prayers and faith.

--geoff

January 13, 2010

2010-01-13T07:50:00.000-08:00

We have received tangible and spiritual gifts from people and continue to receive them. It is so humbling to receive the love, support and help of others. You make me want to be a better person, a giver and a server. You are in our constant thoughts and prayers of gratitude. Some of you I know and love. Others I have never met. Some I knew so long ago and have recently made reconnections with. Sometimes a gift is a smile and warmth of soul. So often it is just the look on your face as we talk. Others of you, it is a simple touch and nothing more is needed. Total strangers to us have bolstered Sofie's wellness fund making it possible and even desirable to open her medical bills and begin sorting through the finances of cancer. Many have and continue to spend countless hours with Sofie in the hospital partaking of her spirit and lending your own. Some of you are medical professionals who have gone the extra mile to bond spirit to spirit with Sofie and our family. Some of you are church members who continue to bring dinner into our home each week providing me with the opportunity to hunker down with my kids instead of shopping and choring in my kitchen. Some of you are children who cant stop thinking and wondering about Sofie, writing her letters, collecting pennies and selling hot chocolate. Some of you are my children's teachers both at school and dance who have been constantly mindful of my little ones and watch over them in my absence. You are also the parents of my music students, never losing touch, always anxious for a report or good news about Sofies treatment. One of you ran a marathon for Sofie! What an inspiration you all are. Might I add that it has been Sofie's friends from school, dance and other places that have staggered our imagination of what the youth bring to the table in times of crisis. Where do these kids come from? We love you, are indebted to you and hope to continue to serve you throughout our associations. Good people, good community, lots of faith and all is well.

Bonnie

still feeling sick, ugh.

2010-01-12T19:46:00.000-08:00

wish i could report sofie is feeling better. nasty cisplatin!

--geoff

Music Lessons!

2010-01-12T17:39:00.000-08:00

Recently, Ive given a lot of thought to my music lessons and my students who are waiting patiently to get a lesson in! I've made a decision that due to all of the travel back and forth from Jackson to SLC, I will be discontinuing lessons until summer session at which point Sofie's treatments should be complete. I realized also that when I AM in town, I need to focus on my younger daughters who only see me part time. Please keep track of the lessons i owe you because I miss your kids terribly and want the opportunity to get those lessons in! Thanks for your understanding and prayers for Sofie. We feel your love!

Bonnie

sofie not feeling so great

2010-01-11T22:42:00.001-08:00

our little sofie is still recovering from the last round of chemo, feeling the relentlessly lingering and nauseating effects of cisplatin. the antiemetics she takes home from the hospital seem a bit less potent and thus less effective somehow than those administered at the hospital. and since she left the hospital early due to possible permanent removal of doxorubicin from her regimen, ironically she has to endure more directly the full force of nausea. why can't she just feel better, sweet girl. she is fighting the good fight, but this chemo stuff is so hard. with all of the great news of late, she/we are still in deep need of your prayers and faith. relentless nausea can just wear you out, and though i don't want to speak for her, i can't help but hope her spirits might be bolstered from your continued prayers.

thanks all.

--geoff

Sofie Calendars

2010-01-11T12:25:00.000-08:00

If you are looking for a calendar please email hawsandhaws@aol.com

Sunday, January 10, 2010

2010-01-10T20:26:00.000-08:00

Sofie and I were able to come home a few days early due to the doxyrubison being discontinued from her last chemo treatment. We pulled into Jackson yesterday, and went straight to the high school for the last half of Damon's game. This morning we decided to try to take Sofie to sacrament meeting since our church now starts on the later schedule. Getting her there was no small feat, however, and she felt very sick. I think we'll stick with having the sacrament brought into our home to avoid the same hardship next time. She had a hard time today, lots of nausea, and asking for more and more meds. She also had strong chest pains tonight which scared her. Spiritually today, though, she was strong. We are very connected, she and I. A lot of our spiritual insights come at the same time and we seem to be sharing the same soul, which can be very comforting through it all.

We will be in Jackson til the 27th. Next time we have a long stay, 14 days, interspersed with 2 day breaks. We are grateful for time home to connect with real life, friends, and of course, sisters, Hallie and Sydnie. Had a great day with the little ones today. It's hard to believe we are in this for several more months with the ups and downs that actually create strength as we go along. Living with tribulation connects us closely to God and what a blessing it is in our lives.

Bonnie

basketball

2010-01-08T19:57:00.001-08:00

sofie's friend, damon, starts at the 2 guard for jackson hole high school's basketball team. they are ranked 4th in the state and just beat the 3rd ranked team, Worland, 51-41 in a conference win. jackson is now 3-0 in conference play. damon played well despite receiving a small cut over the eye that kept him out most of the 1st quarter. go damon and go broncs!

January 8th 2010

2010-01-08T10:01:00.000-08:00

Sof just woke up for the day. Her night was phenomenal. The cisplatin WITHOUT the doxyrubison has proved to be considerably more tolerable to her. She is not sick or doped up AT ALL. Usually by this time during chemo, she is pretty dysfuntional. So it turns out that for her, the doxyrubison was the monster chemo, much harder on her than the "red devil" (cisplatin) It was also so hard on her heart that they may have to completely discontinue. We'll find out after the next echocardiogram.

Bonnie

FIRST STEPS! January 7 2010

2010-01-07T17:56:00.000-08:00

Sofie had her first REAL physical therapy.... meaning she did more than stand-up and sit down in a wheel chair to go to the bathroom!! She stood up with her leg down and took her first steps with the use of a walker, BUT, she did it solely by herself and practically took off down the hall with the entire ICS staff cheering!!

It was so exciting. Sofie's PT reminded her that she would still have to turn around and go back so dont go TOO far in one direction!! This was thrilling for Sofie. She had much fear in just letting her leg drop down to a vertical position. Said it felt like her leg was going to drop off.

We loved her physical therapist. First she encouraged Sofie to begin eating her top ramen by herself!! Just kidding. But she caught me feeding Sofie and gave us a hard time over it. By tonight, Sofie will be drugged up and make it difficult for physical therapy to take place. Hopefully they will put in an order for Sofie to get PT in Jackson when we get home. We'll have 2 weeks off starting about next Tuesday.
Bonnie

Results of Testing

2010-01-07T14:38:00.000-08:00

Sof sustained more hearing loss, but not enough to warrant suspension of today's next round of cisplatin. Her echocardiogram, however, indicated a sub-normal number which read too much stress on her heart caused by her last doxyrubison treatment. Surprisingly, it is the doxyrubison treatment that will have to be suspended for now. This means she will only receive cisplatin for this treatment. She will be given another echocardiogram in 2 weeks to see if her heart has recovered to a point where she can resume former treatments that have been so effective at killing the cancer.

Up to this point, Sofie has been participating in research which means that her case study becomes part of a national database for osteo sarcoma research. Today we were presented with the option to continue the current regimen and research plan and also commit her to a year of self given shots thereafter. It's an experimental med called interferon that, much like the chemo, causes flu-like symptoms. Doc says most patients choose to finish with the standardized treatment at this point and not continue with the interferon. Once you sign up for randomized treatment and are chosen, the government says what hoops you jump through and when. That doesn't sound desirable, nor do the shots, and since the surgery shows her treatment has been super effective, we have opted out of interferon.

Prayer is power, and God is so good. Sof is in good spirits, albiet she is to the point where she gets frustrated having to train her nurses what to do! Sofie is learning and growing everyday. Can't replicate the learning experience of cancer, even though I wouldn't recommend it!!! It is our journey.

Bonnie

January 7th

2010-01-07T11:08:00.001-08:00

Bonnie and Sofie arrived in Utah last night and they stayed the night at Bonnie's parents house. They left for the hospital this morning at 10:30. First on the list today was the echocardiogram and the audiogram.

An echocardiogram measures the stress put on her heart and the audiogram measures hearing loss. If she does not pass the hearing test, she will not be able to continue with the cisplatin. Cisplatin is Sofie's best defense against Osteosarcoma, so we hope and pray that everything goes well so that she can continue with it.

We appreciate all of the prayers and fasting that has been done by everyone. We ask that you continue to keep Sofie in your prayers. Thank you for all of your support and love towards Sofie and her family.

Megan

January 4 2010

2010-01-04T19:33:00.000-08:00

Sof has had a wonderful break from chemo and some precious and memorable times with friends. She and I are due to leave for SLC on Wednesday. She will be tested for hearing, then admitted on Thursday. We will be gone about 5 days!

news even better than 98%

2010-01-02T10:47:00.000-08:00

so, everybody, guess what: bonnie talked to dr jones (the surgeon) today initially with the intent to address questions about sofie's pain medications. well, in the course of the conversation it comes out that 98% given as the kill rate for cancerous cells of the excised tumor was just the best number the pathologist could attach. turns out that NO cancerous cells could be identified. NONE! and the only cells that were identified as living couldn't be distinguished from normal cells! that, our friends, to us qualifies as miraculous. what say ye?

a big side note: a heartfelt farewell to megan who left jackson today on the shuttle for the slc airport. thanks for everything, megan!

--geoff

December 30th

2009-12-30T14:38:00.000-08:00

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)...

2009-12-30T11:39:00.000-08:00

...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!

2009-12-29T12:10:00.000-08:00

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

2009-12-27T15:48:00.000-08:00

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

2009-12-25T00:48:00.000-08:00

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!

2009-12-23T17:57:00.000-08:00

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

2009-12-23T08:32:00.000-08:00

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

2009-12-22T16:56:00.000-08:00

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

2009-12-22T12:40:00.000-08:00

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

December 22nd

2009-12-22T11:04:00.000-08:00

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

2009-12-22T08:15:00.000-08:00

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

2009-12-21T12:11:00.001-08:00

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

2009-12-20T19:52:00.000-08:00

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

2009-12-20T14:56:00.000-08:00

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

2009-12-19T12:08:00.000-08:00

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

2009-12-18T16:15:00.000-08:00

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

2009-12-18T11:56:00.000-08:00

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!

2009-12-18T10:01:00.000-08:00

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

2009-12-17T14:44:00.000-08:00

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

2009-12-17T07:54:00.001-08:00

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

2009-12-15T20:35:00.000-08:00

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

2009-12-12T19:30:00.000-08:00

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!

2009-12-10T15:06:00.000-08:00

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

2009-12-09T16:29:00.000-08:00

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

2009-12-09T06:48:00.000-08:00

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

2009-12-08T18:31:00.001-08:00

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

2009-12-08T09:10:00.000-08:00

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!!!

2009-12-07T08:52:00.000-08:00

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

2009-12-06T14:12:00.000-08:00

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

2009-12-05T11:38:00.000-08:00

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

2009-12-05T09:15:00.000-08:00

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!

2009-12-04T19:18:00.000-08:00

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

2009-12-04T17:04:00.001-08:00

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

2009-12-03T07:07:00.000-08:00

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!!!

2009-12-02T16:31:00.001-08:00

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

2009-12-01T20:48:00.000-08:00

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

--geoff

surgery date moved up!

2009-12-01T17:15:00.000-08:00

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..

2009-11-30T17:36:00.000-08:00

...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

2009-11-29T00:25:00.000-08:00

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

nausea

2009-11-28T22:25:00.000-08:00

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