Tuesday, March 30, 2010

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.


Monday, March 22, 2010

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.


Saturday, March 20, 2010

March 20th

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

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.


Wednesday, March 17, 2010

March 17th

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.


Monday, March 15, 2010

March 15th

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.


Friday, March 12, 2010

To the sisters in my church ward

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.


March 12th.... CAST OFF!

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.


Casper Wyoming, March 10th

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.


Sunday, March 7, 2010

the cast comes off this friday!

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!


(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.)



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.



Tuesday, March 2, 2010

March 2nd

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