Port Removal

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

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

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

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

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!

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

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!!!

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!!

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

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

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!

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

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

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!

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

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

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!

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

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

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