Friday, April 30, 2010

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...


PS Hearing aides are in and she really likes them!

Wednesday, April 28, 2010

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!


Wednesday, April 14, 2010

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!

Sunday, April 11, 2010

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!


Friday, April 9, 2010

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 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.


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.


Sunday, April 4, 2010


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!


Thursday, April 1, 2010

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!