Monday, November 30, 2009

well..

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

here's what's basically involved in chemo:

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

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

--geoff

Sunday, November 29, 2009

courage

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

Saturday, November 28, 2009

nausea

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

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

--geoff

sobering conversation

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

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

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

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

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

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

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

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

--geoff

Sunday, November 22, 2009

Biggest Surprise! November 21st

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

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

Friday, November 20, 2009

November 20th- Clara and Sofie reunited!

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

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

Thursday, November 19, 2009

November 19th-Sleepless in Seattle!

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

Thursday, November 12, 2009

November 12th

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

Wednesday, November 11, 2009

November 10th

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

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

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

Monday, November 9, 2009

November 9th

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

Saturday, November 7, 2009

November 7th

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

Friday, November 6, 2009

November 6th

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

Tuesday, November 3, 2009

Post from sister Hallie age 8

Complamants for Sofie by Hallie Wilcox (no edits)

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

November 3rd

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

Sunday, November 1, 2009

November 1st

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