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Sierra Shannon Johnson 
My Mommy keeps this page current to share my progress with all of our friends and family. She has also been making a guest book and journal book to share with me when I am older and can understand how much everyone cared!
This is the modified version of how I got a Caring Bridge Page and what has happened since… My original version is on date June 10, 2006 2:30 PM
My name is Sierra my family calls me Missy which is short for “mischief”. On December 26, 2003 I was diagnosed with Acute Lymphocytic Leukemia. I then began treatment and was entered into a research group with 4 different forms of treatment (CCG 1991). It seems like quite a risk, but they explain that everyone will get the “standard” treatment but authorizing the research is just allowing them more treatments and to determine if there are better or more effective ways to treat Leukemia; oral medications vs higher doses by vein, doing 2 Delayed Intensification phases vs only one phase.
In this study I was randomly put into “Regimen OD” “Investigational Treatment 1”. The difference in this one was I had to do two instead of one Delayed Intensification phase which is the most aggressive phase of treatment except from our first 30 days of the initial treatment. Have I lost you yet? Well they lose me every time!!! blah blah blah! I went to sleep on the first blah! It is a good thing Mommy is a nurse, not to mention an anal compulsive, control freak, manager type! We mainly keep this piece in for other families that are looking for similar situations.
2 years and 2 months later I have finished the first step of this journey with various treatment phases, Dr apts., medications, steroids, and many many Johnsonville BRATS! February 23, 2006 was my last day of chemo
Then on March 21, 2006 I had what we all called my “superbutton” removed. The technical name is central line or port-a-cath. This was a huge part of my treatment AND my life. I will keep it forever!
Now we are taking each day at a time. I will continue to go back for checkups for the next 5 years.
*Year 1 - Off Treatment*
For the whole first year I will go in for follow-up testing every 4 weeks. This will consist of blood work and head-to-toe wellness exam with the doctor. We will rotate between Fairmont and Rochester. At least through the summer, we will see how comfortable we feel when school starts, then maybe go to Rochester every 3rd time.
*Year 2 Off Treatment*
I will get follow-up testing every 3 months.
*Year 3 Off Treatment*
I will get follow-up testing every 6 months.
*Year 4 and 5 Off Treatment*
I will get follow-up testing annually.
Now the best news of all… Will I be considered cured after the 5 years? The answer was… They feel pretty confident that if I do not relapse during treatment I should be cured!!!!! Amen!!! They said it is extremely rare to relapse after treatment, not unheard of but very rare!!!
Lastly, after the 5 years I will have intermittent testing in the future to see if there are any long term complications from the treatment.
We would like to thank all of our family, friends and even our new friends for keeping us in your thoughts and prayers! Also for your messages in my guest book of love and support, you give us strength.
God Speed!
Love
Missy Sierra and all the Johnson's
Baby Girl, we all love you so much!! You have to be so strong right now I pray you will continue to fight this and get better. And I know you will be such a strong beautiful person because of it. Amen!!
If tears could heal there would be no illness!
CaringBridge friends are like stars in the sky.
Even though you can’t always see them,
You always know they are there.
We can no longer have lists of CB friends on our pages but if you see the links in the guestbook and you have time to spread some strength I know it will be appreciated!
Thank you so much to all of you who keep checking on us. You are wonderful people and even if we do not get the opportunity to tell you personally, we are grateful for your messages and prayers!!
God Speed! To all of you and your families!!
Journal
Wednesday, May 13, 2009 11:23 PM CDT Hello Everyone,
I know it has been forever!! But before I get to our updates I want to share a very moving moment for me and explain the new song on our page.
Back in December I was driving home from the cities after a meeting. I had just passed the highway that takes you south to Rochester and I thought to myself that “this is the same highway we take when we go to see the Breuers”. Then this song came on the radio and I started thinking about the boys and the tears began flowing. I know I can be a little slow but I knew this meant I was supposed to call Susie. We were visiting a while about the boys and how they were all getting through one day at a time.
I have always admired Susie’s unwavering Faith and this visit was no exception but something else happened during our that took my breath away. While we were visiting Susie was sharing with me something from her devotions. The definition of HOPE is the expectation of a favorable future with Gods direction. I may not have it right word for word but was a powerful statement and as she was reciting this I was taking the entrance ramp from I 35 to I 90 and immediately stunned by what I saw in the sky. There were two bright, brilliant ORANGE beams coming straight down out of the sky. It was the most beautiful orange glow I have ever seen in the sun set. And it disappeared in about 5 min.
I can only say that with certainty it had to be Bryce and Tim “Shining their light down to give strength” to Susie, the boys and all those that knew and loved them. There is no way I can give this total experience justice but it was such a powerful, Spiritual moment I wanted to share it. I had told Larry all about it and said it was the most amazing site and I will probably see anything like it again. Shortly afterwards Larry took this picture below. It is not the same and it does not have the orange glow but it was close to what I had saw that day so I wanted to attach it to this journal.
We will forever keep you and the boys in our Prayers Susie for your strength and so you will always have HOPE!!
And for the updates, I am sorry for long absence but for Sierra all is going well so we have started getting settling into this new norm without frequent tests, results and appointments. Currently, she has been having her checkups/blood tests every 6 months. They are in a word “boring” that is what they tell us anyway, exactly what they want to see. She is growing; literally… “like a weed”! She is nearly the same height as Jacob. The boys, are doing well also. They were in football again this fall and now they are looking for baseball and softball. Just over a week ago Jacob broke his ankle on the neighbor’s trampoline. We don’t know yet if he will be able to participate or not.
What have we been up to now that we are not tied down to monthly and quarterly apts?? In December, we all went to Branson, MO for Christmas where my siblings and Mom were all together for the first time since 2002. That was a quick trip but a lot of fun. We also had an amazing trip to Chicago last month. Our Nieces from TX are in orchestra and they were performing in Chicago. My sister was a chaperone and we got to see them perform at an amazing auditorium and take in a bunch of sites for a long weekend. It was wonderful! Having never been there before I was overwhelmed by all the sites and history. I can’t wait to do it again. And to make it even more carefree and memorable we took the Amtrak train out of Winona. It was so much fun for all of us. I will try and get some update pictures on soon now that school is out for the summer for me.
Take care and thanks for stopping in…
God Speed! Love the Johnsons
Read Journal History
Hospital Information: Patient Room: 3-152 St. Mary's Hospital - Francis Bldg
200 First St. SW
Rochester, MN 55905
507-287-4681
Links: http://www.marrow.org/ Bone Marrow Registry
http://www.yourbloodcenter.org American Red Cross Blood Services
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