Saturday, Jan 30, 2010

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!

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

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

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

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

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

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)

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

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!

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

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.

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

--geoff

Music Lessons!

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

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

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

Sunday, January 10, 2010

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

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

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

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

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

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

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%

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