Monday, February 25, 2008

A Salute...

  • to all the sore backs, hips, and necks that bear the worries of the heart and mind
  • to all the resilient survivors of trials instant and chronic that continue to strengthen others in their times of need
  • to all the poets, known and familiar, that remind us the spirit is stronger than the flesh
  • to comfortable PJs
  • to researchers, science, and the ones who finance such curiosities
  • to innocent compassion scribbled on a page by young and old hands
  • to clergymen who supply pews, candles, and comfort for the searching souls
  • to friendship that lasts years of little contact
  • to spunky uncles with wonderfully bald heads
  • to cheerful caretakers willing to "measure my output"
  • to parents, family, and friends who love me in spite of my faults, ease my burdens so willingly, and bless my life beyond measure
  • to my God who makes everything possible and patiently shows me the miracles of His love
I Salute!

~taken from Sarah's notes written on Feb. 18th at 4am

Friday, February 22, 2008

Feb 22nd Update

It's been a tough few of days so far this week. After the last dose of chemo on Sunday there were some noticable reactions. The most difficult one so far has been the depletion of healthy cells in the mouth, throat, and digestive system. Sarah has struggled to eat and talk this week which allows for extra time to sleep and heal.

We have been blessed with letters and cards expressing support and love through this process and know that all the prayers on our behalf are being heard. We appreciate the sacrifice from K.C.'s mom who was able to come through to Utah for a couple of weeks and just left on Tuesday. Her presence and that of Sarah's family has provided wonderful support as we transition into our new routines.

Due to Sarah's weakened immune system we ask that visits be limited to family and necessities only for the remainder of this week. Cards and messages of support are always welcome!!

Friday, February 15, 2008

Valentines' Day--Oh, the Love!

I've now been a patron of "7th Heaven", as our floor is known around the hosptial, for a week. What an amazing staff! The nurses, PCTs (Patient Care Techs), doctors, and staff are very cheerful and dedicated as they go about performing their duties. I joke that I'm just back on the cruise ship, hanging out in my cabin....but I think their care even goes beyond the great "service of the seas". (Although, come to think of it, I could use a sideshow every once and a while. I miss the glittery costumes and showtune karaoke...don't worry, I'm not looking for any volunteers!) Lightheartedness aside, I am in good hands here. I'm very lucky.

It was also great seeing all the scrubs with "lovely" themes here at the hospital, and I even joined in with some festive PJs of my own for the day. Some volunteers had come around a few days previous to decorate our doors with hearts, and then at night some of the PCTs came in with a sweet note and hershey-kiss-rose. KC and I enjoyed a quite night just spending time together after my Chemo often do we get to do that anymore? Life, I have decided, is way too busy and distracting.

I have been truly strengthened and overwhelmed at the love shared with me this last week. I can't thank people enough. It's amazing how someone will show up with some sweet words of encouragement, or will write things to me which send me into laughter. My students and friends at school have been so tenacious in letting me know I am missed, which makes my heart swell! I am so proud of them, and sensitive to their compassion.

My friends in the neighboorhood and ward have eased my thoughts by taking care of things "on the homefront", while my friends and family far away have sustained me with their solid faith and prayers for my health.
Thank you to all. These words and my ability to express my feelings are so inadequate, but I hope you feel the message and gratitude beyond the text.

As far as my progress, everything seems to be going quite well. I only have one more dose of chemo for this visit, although I will be here in the "cabin" for another few weeks getting an immune system back. The side-effects of the medicine have been very minimal, and I thank my blessings hourly. Who knows, I may even get to keep my hair! (Hopefully that doesn't dissappoint many of you!)

Enjoy ALL your time with your loved ones, and thank you for sharing your love with me.


Tuesday, February 12, 2008

Hey, Students! Look here to talk with Mrs. Scott!

Hello, Vikings!

I miss spending the days with you, but know you are in good hands with all the teachers and staff there at school. I thought I'd create a special post here so that if you want to write or ask questions, you can do so. I'll check it as often as possible, and hopefully you'll feel like I'm still there with ya...except I won't be taking those recess minutes to share my words of wisdom! (Lucky you!)

Some of you may have heard that I have Leukemia. Yep, it's true. But what I have found out this last week, is that people have very different pictures in their heads about what this looks like, and acts like. The truth is, there are many different types of Leukemia. Mine is called APL, to say the short version. So, what is mine like? Well, I still look the same, except I am wearing my PJs all day (lucky me!). Really nice doctors and nurses come talk to me during the day, they bring me my food in bed, they give me medicine to help me feel better, and I read books, go for small walks around the hospital, and write to you guys! The medicine I take is very special, because it only works on my type of Leukemia. Scientists and doctors have done research with genes and found how to do "target practice" on the bad cells in my body, and eventually reverse the mutation. Pretty cool, huh? So, I'll be gone for a while getting better, but the good news is...I'm getting better.

So, first let's talk about Genes...Heredity...(are you singing yet?) Well, this week I've learned that my genes had a mutation. They changed unexpectedly; I didn't inherit the problem, or get it from an environmental just happened. The genes in my bone marrow (the middle part of the bone) changed a bit so that the blood cells it makes only grow a little bit. Because they did not grow into adult blood cells, they didn't leave the bone marrow to protect my body from sicknesses and made it hard to produce other important types of cells. What this meant for me, was that I would get pale (look a little more white than my white self), I was more tired than usual, and if I got bumped just a little, I would get a nice, nasty bruise.

Other blood cells were also affected, like my white blood cells. They are kind of "retarded" due to the mutations, so they are not able to fight off germs as well. This is one of the main reasons why I need to stay in the hospital. If I get around any germs right now, I will get really sick. Normally, the white blood cells fight off the germs that make us sick, so even if you start to get sick, you'll get better eventually. Not me, for a while. Those retarded white cells don't know what to do with germs, and there aren't that many in my body, anyways, compared to "normal" people. (Yea, we know who the "normal" ones are!) So, over the next few months, the medicine I am taking is getting rid of the mutated and retarded cells, and is helping to fix the mutation in the DNA back to what it was before, so it will produce healthy blood cells again. Pretty amazing.....are you impressed? I sure am!

Hopefully this helps you understand a bit more about why I'm not there with you at school. Recently Mrs. Underwood and Mrs. Steele delivered a package to me....TONS of flowers made of colored tissue! They are so beautiful! They are hanging as garland on the wall, and bunches are in vases all over my room. It looks soooo much better in here. The nurses come in and just stare with smiles on their faces. It's great fun to look at, and makes me happy thinking of you. Thank you for all the work you put into that and also the great letters/valentines. Really. Thank you.

Leave me a comment if you'd like, and I'll try to answer back. If you have stuff you'd like send to me just give it to Mrs. Underwood and she'll get it to me somehow. Be excellent to each other, because I know you are just that. And remember that learning is FUN, no matter what the subject is.

Thinking of you often,
~Mrs. Scott

Treatment has begun

The treatment for APL (for those that haven't linked to the site below) is a combination of chemotherapy and a vitamin A type drug that will go after the source of the problem. Sarah received the first dose of chemo on Sunday afternoon. This first round consists of 4 doses every other day, which means we are waiting for the next dose this very minute. The vitamin A drug (ATRA) began 24 hours prior to the first dose of chemo and will continue throughout the entire treatment regimine (we anticipate it will be at least three months).

We expect her to receive blood and platelet transfusions as the days progress and her cell counts dip pretty low. If you are able and willing to donate blood or platelets please do so. We are extremely grateful for those that donated these necessities that have been instrumental to helping Sarah.

Sarah has yet to feel any side effects and her sisters have big plans for when her hair falls out (if it does). I don't think it's right to say they are excited, but it's nice to know they are ready to step when needed. Her brother, Ben, has already provided hairstyling tips available during the transitional period (he's in the military for those that don't know).

Monday, February 11, 2008

The Beginning

It started last week when Sarah felt poorly, but not so bad that she was unable to work or function. She had been pale and weak on occasion and had continued normal activities including helping her parents move boxes. We did notice that she bruised rather easily and was often just not her normal energetic self.

On Tuesday morning she was unable to catch her breath, her heart was pumping extra hard, and she had no energy at all so I determined we would visit the Emergency Room that morning. They began by taking blood and started running tests. At first we thought it was either anemia or some reaction to some new meds she was on, but soon they informed us that her cell count (red, white, and platelet) was abnormally low and would begin transfusions immediately. She began to feel better after they gave her 4 units of blood and now they could start looking for why the count was so off.

They first looked at possible bleeding, but found nothing out of the ordinary that would explain her status. So they felt it was either lack of creating new blood cells or an autoimmune problem where new cells were being attacked as foreign matter. Because her condition was unknown she was admitted to the hospital for overnight observation on Tuesday. Blood work was run every 4 hours, which became a clotting/bruising problem due to low platelet counts.

To learn if new cells were being made they needed a bone marrow biopsy which began on Wednesday morning when the first two attempts for marrow came up dry. The third attempt was to extract core material, but this was excruciatingly painful and halted immediately. The biopsy was rescheduled for Thursday morning using same-day surgery. The procedure on Thursday resulted in one dry marrow tap so again a core sample was extracted. The core sample was insufficient so they did two to ensure they had enough material for testing.

Sarah was sent home to rest and was doing so when a call from the Oncologist came at 2pm to come to the office immediately. Sarah's parents were in town at the time and they came with us to the meeting. It didn't take long and the doctor broke the news that she definitely had Leukemia. Which type was still not pinpointed but she was to be admitted to the hospital again as soon as possible.

After further testing was done on Friday and Saturday, the lab was able to identify that she had Acute Promyelocytic Leukemia. The Oncologist indicated that of all the various types of leukemia this one is dangerously aggressive but also treatable with a high success rate of remission and cure.