A Few Humorous Stories

School started on a Tuesday this year.  Just to make things interesting, an infection began in my central line on Monday so at 2 am Tuesday morning, Loren took me to the hospital where I was admitted.  He made it home before any of our girls were awake but for the second year in a row, I was in the hospital when they started school.  There isn't much they need me for at their ages but just taking their picture and wishing them a good day at school is easier done at home than in the hospital.  Thankfully, they are not as sentimental as I am and truth be told, they were probably grateful that I wasn't there to be mushy.  The doctors did decide to remove my central line this time (this was my 3rd infection and 2nd line) so no more infections!  But while I was in the hospital for a few days....humor was found.

Now many of you will find this disgusting, but I do like to eat Cream of Wheat for breakfast.  I like it made with milk and raisins with cinnamon sugar sprinkled on top.  They do serve Cream of Wheat at the hospital but it is with brown sugar not cinnamon sugar and usually no raisins.  This time I decided to ask for my breakfast the way I would make it oat home.  Their catch phrase at food services is "we make everything fresh".  So, I called to order my breakfast and asked if they could put in some raisins before they cook it.  (I microwave mine and if you put in the raisins before you cook it, the raisins get plump and juicy...yum!)  I was told (my mom later informed me that I was naive to think otherwise) that they just make a big pot of it and serve it from there so they could not put raisins in.  I was disappointed but ordered it anyway.  As I was hanging up, the person on the other end said, "Since we make everything fresh it will be up in 45 minutes."  I almost laughed out loud - she just told me that there is a big pot sitting on the stove!

As many of you have experienced, when you are in the hospital, you do not get a full night's sleep.  In order to be ready with the correct treatment for the day, your blood is drawn between 3 and 5 am.  With a central line, this is not a big deal, the nurses just draw blood out of one of the lumens (I had 3) and you just roll over and go back to sleep.  Since the central line was removed, blood was drawn the old-fashioned way - with a needle.  So, I am asleep and about 3:30 am the light is turned on and I hear a woman's voice with a German accent tell me her name and that she is here to draw my blood.  If only you could read a German accent this would be better.  I was given commands in short sentences.

What is your name?  Birthdate?  Give me your left arm.  You will feel a poke. (Ouch!  That was a little more than a poke.) About a minute passes - there is a lot of blood to draw.  Then the needle is out, a bandaid is on and her parting words.  Have a nice day.  

The light goes out and I am left laying there thinking to myself - what just happened?  Was that the German Inquisition?  Whatever that was - it surreal and really funny.  Goodnight.

The Journey Continues

Thank you to everyone who joined us in August by doing something active to mark my one year anniversary of diagnosis.  We had a great time doing the 5K in South Weber.  Some of us ran and some of us walked, but we all finished and felt strong at the end.  A special thank you to the Carlson family who came out in full to support us.  You are a family of angels!

Later that day Loren and I went out to dinner for my birthday and I officially took off my Wendi's Fight Club bracelet.  I know my fight continues but having been in remission for a while and feeling pretty good, the time was right for me to take it off.  I really appreciate everyone who has a bracelet and wore it for me and my family. The fight was and continues to be one of the hardest of my life (right there with losing my brother) and I am so humbled to be a part of so many lives and to know of your love and support during this rough time.  

Our journey continues to be one filled with speed bumps on the way to full recovery.  We knew it would be and we


are weathering the bumps which have included 3 separate stays in the hospital for blood infections and one gall bladder surgery along with up days and down days.  Hopefully all that is behind us now (you only have one gall bladder! and my central line which we think was causing the blood infections is now gone).  The only down side is that instead of taking blood from the central line each week I get to be poked with a needle.  But, I would rather have that then go back to the hospital.  

Our three beautiful, talented, amazingly kind daughters.

Our non-cancer lives continue on as well with school starting, soccer games, homecoming dances and horse back riding lessons along with coaching a rec city volleyball team and redoing our kitchen, we are keeping busy and the mom taxi service is back in action!  I am ecstatic that I get to be a part of all the fun!

Join us in celebration!

This Saturday (the one year anniversary of my diagnosis), we as a family and a few friends will be participating in a 5K in South Weber.  I would like to invite you and your families to do something active and fun this weekend (we would suggest a 5K).  Enjoy the ability to do the activities you love.

I used to take it for granted that I could walk 3.1 miles with no problem.  I never have nor will I ever claim to be a runner but I could walk.  This week I walked 3 miles in preparation for our 5K and finished in tears because my body was finally able to do it.  I have been working up to 3 miles for several months and some days walking in and of itself is still difficult but I am grateful for the strength my body continues to gain.   

So, I will probably be the last one to finish the South Weber Country Fair Days 5K but I will finish.  Do something great this weekend and be happy!

Coming up on the 1 year mark

Not calling it an "anniversary" but we are coming up on the one year mark since Wendi was diagnosed with leukemia.  Last year at this time we were enjoying summer vacation and getting ready to celebrate Wendi's birthday.  Then the completely unexpected and difficult phone call from LDS Hospital that Wendi needed to drop everything and get checked in.  That was Saturday August 9 last year.  Wendi has done remarkably well since then.

As she posted in March she was declared in 100% remission and 100% of her blood is from her brother who generously acted as her blood marrow donor.  Since that time she has continued to get stronger and has stayed in good health.  We have had one or two small roadbumps along the way but very minor in the grand scheme of things.

As we are coming up on the one year mark of her fight we are going to celebrate how well she is doing by participating as a family in a 5K   #wendiwillwin

Thank you, thank you, thank you....miracles do happen

We met with a doctor today at LDS hospital and got the news we have been hoping and praying for.  I am in complete remission with no detectable evidence of disease!  The bone marrow biopsy showed no leukemia cells.  And one of the tests shows how much of my blood and marrow are my cells and how much are my donor's (by brother Scott's).  That test showed that 100% are Scott's!!!!  As was said in our meeting - the results don't get any better than this.  

Thank you so much for your prayers consistently said on my behalf.  Those prayers have been answered with the best results we could ask for.  Miracles have happened today through the power of prayer and through the power of priesthood blessings which have been given to me throughout this journey.  I am grateful to know that my Father in Heaven is aware of me and my family in the good times and the bad and that He is always there for me through prayer.

Thank you again for prayers and good wishes for me and my family.  I am extremely grateful to all of you.

#WendiWillWin

Slight Change in Plans

We had to switch my 100 day meeting  with the doctors to Wednesday afternoon so news will be posted on Thursday!

Thanks for all the prayers!

An Update

Everything has been going along swimmingly for us.  I go in once a week to the clinic at LDS hospital, which entails blood work (still taken from a central line so no poking involved), a visit with a PA with a quick check up, a visit with a doctor with another quick check up followed up with a chest x-ray since I am still on steroids.  At the end of the visit, the doctor usually just says, "Everthing looks good, see you next week."  Really the best words I can hear!

We have just been moving along with soccer practices, indoor games, planning an 80th birthday party for my in-laws (I am just helping - my fabulous brothers and sisters-in law are the driving force), etc.  I am absolutely enjoying being home.  Oh, I also got some eyelash extensions!  Never thought it would something I would do - had some great lashes before - but lost them along with the hair.  The lashes are actually attached to the lashes I had so they are still sparse and light (don't show up in a pic) but I love them!

Had a good time greeting my kids with my new wig last week as well.

Gotta love the dress up box!


The next big milestone for us will be the 100 day checkup.  I will go in on the 2nd to have a bunch of tests done including a bone marrow biopsy.  We will get the results on March 9th.  This will give a good indication about the leukemia and if it really is all gone and where we go from here.  This is one more time when I would appreciate any extra prayers you can say for me.  I know miracles have happened along the way because of your prayers.  Thank you.

What I have been up to - real life...

I never thought I would be so grateful for laundry and grocery shopping.  Now to be fair, I have never really minded laundry but grocery shopping/menu planning and I have a love/hate relationship...mostly hate.  But of late I go to the grocery store almost every day and I love making dinner.  I anticipate that at some point the novelty of this will wear off but for now, we are enjoying sitting down together and eating dinner and I mostly listen to our girls talk about their day.  I am enjoying and am grateful for the simple parts of life.

Other than that I can do whatever I feel up to each day.  That mostly entails running errand and attempting to put some new decor up in the house - it was really outdated.  I continue to heal and am being patient with the time frame.  I keep reminding myself that my body has been through alot over the past few months and it will take at least one year and maybe two to have the normal amount of energy.  I am however able to do what I want (mostly) as long as it doesn't involve crowds since my immune system is still in it's baby phase.  So no church on Sunday and no Costco on Saturday.  I do get out and walk each day or ride my bike on the trainer in the basement - my muscles are very weak due to muscle wasting that is a side effect of steroids I am taking. 

One of the funnest things was taking a hike with Loren below Snowbasin.  I catergorize it as a hike but it was probably more of a walk but we were outside in the sunshine and fresh air, walking on packed snow and just enjoying the great outdoors.  

I feel very lucky and blessed that I have felt so good since I have been home.  We have been healthy so far and the doctors have been pleased with the progress I have been making.

Thank you for your continued prayers and support.  We feel blessed to have such great friends.

Finally an update.....

Yes, I have been ignoring my blog for a while.  Sorry.  Here is the latest.  I was released from the hospital on Dec 30 (our 22nd anniversary) and it was the best anniversary present - ever!  Our entire family was just giddy.  I didn't count days this time but it was over 6 weeks - I was admitted on Nov.17 so you can do the math.  Some people have asked what we did for our anniversary and the answer is nothing.  We ate something at some point and then our family proceeded to sit and snuggle on the couch and watch some show that I don't recall.  The most important and memorable thing was just being home and holding our kids.  As I walked in the door, Callie met me with a huge hug as Emily and Elizabeth held a banner made by our good friend, Heather, that said Welcome Home Wendi.  I ran thru the banner with lots of cheers.  Then we knelt in family prayer to offer a prayer of thanks for being home and for the many blessings we have received during this time including all of the prayers, visits and messages of support we have received from all of you.  Then we danced to We Are the Champions!  My family are champions for how they have weathered this very unexpected storm in our lives.  They are amazing people.

Since then my time is gratefully filled doing "mom" stuff...making dinner, doing laundry, making appointments, and just being home for our girls to talk to.  We have a lot of catching up to do.  Thankfully I also have a small contingency of friends and family who fill the day with visits and errands - I can't be left alone for 100 days after transplant for fear an infection can come on suddenly and I become disoriented.  I consider them my army of angels.

My job is to eat and drink, manage all my meds (there are a ton!) and get stronger.  Most days this also includes a nap :)

I am able to do whatever activity I feel up for as long as there aren't any crowds involved.  So no going to church thru flu season which I do miss but the risk of getting sick is too great.  I still have the immune system of a baby.  All of those colds and sick days that add to your immune system as you grow I no longer have.  I will even have to get my childhood immunizations again!  So, I stay away from crowds and am  a fanatic about handwashing.

Future treatment....still waiting to taper down off some steroids and then a plan will be made.  I go back to LDS once a week to meet with the docs and to get a bunch of labs done so right now we just have a week to week plan which has been fine with me to just rest and gain strength back.

Yesterday we did take a field trip to a sledding hill in Midway which was fun and doable for me since they put you on a tow rope to get you up the hill!  Didn't think I would make it the full 2 hours but I did and then I slept really well that night.  I was just so grateful to be there and to be outside and with my family.  There will be more family dates in the future.

I will update as more info and planning happens but for now I am in recovery mode and loving every day!

It is official

After 6 plus weeks for this hospital stay, one transplant and several obstacles later....

I am going home today!

Happy anniversary,Loren. I love you.

Looking Good

Our early Christmas miracle continues...

On Monday I was given clearance after a clean scope and no active GVH found to start drinking water again!  Water never tasted so good!  It took me about 5 hours to drink about a cup of water but I think my stomach had probably shrunk to the size of a lima bean.  Thankfully my gut has agreed with the food and each day I have been able to advance my diet to new foods.  Tonight I get chicken noodle soup!  Yesterday I had mashed potatoes for Christmas dinner and was thrilled.  As long as things keep progressing as they currently are I will hopefully be home soon.

Today marks 30 days since transplant and what a ride it has been.  I was talking with my friend Natalie today and we were talking about how this feels like somebody else's life, that somehow I will wake up from this dream.  I know that this is my life for now but it sometimes still feels surreal.  I never thought that cancer would be part of my life or sidetrack my life like it has.  I feel like it will take a good while to process all that has happened, everything I have felt and everything we have received from all of you.  

Hopefully 2015 will be a year of healing.  Love to you all!

#WendiWillWin

The battle with GVH continues

My battle with graph vs host disease (GVH) continues.  I feel mostly okay except for my gut which is where the GVH is hanging out.  We've been treating it for over a week with steriods with some effect but not the complete effect we need.  My colon and large bowel need to start working again and they are being very slow coming online.  AAARRGGHHH!!!!  This means I am limited to a diet of ice chips and occasional sips of water.  Don't feel bad....food doesn't sound that good right now.  I wish that it did.  Because of the GVH I won't be going home any time soon (at least within the week) so this year Christmas willl be spent at LDS hospital....still working out the details. But our familly will be together which is the most important part.
I am learning a lot about patience and faith and the strength that comes through friends and family.  There is power there to pull me out of dark places and to keep me out.  I am grateful to be part of such a wonderful network of people who are uplifting and loving.  Thank you for being my friends.

#WendiWillWin

update

No posts for the past little since i have had a rough litte bit.  Mucositis hit pretty hard and took the ability to swallow, talk, or sleep for several days.  The only way to get rid  of it is to have your white blood cells and neutrophils come in and then they can repair the sores.  I was very grateful to see those little neutrophils and to know that perid of pain pumps and suction would soon be over.

Unfortunately it was quickly followed by graft vs host disease. this requires complete gut rest for a few days...not a big deal, i haven't had anything to eat or drink for several weeks.  Graph vs host is treated with heavy duty steroids followed by slow introduction to food. Hopefully it will go quickly.
Thank you for all of your support.

#WendiWillWin

your help

Just a quick request....please pray specifically that i  can find a way through this nausea.  specific prayers have worked in the past and I could use some now.   Thanks!

Shout Out to Your Heroes

Many times we go through life participating in our varied activities and building relationships with those people around us.  We are impacted and shaped by the people we know along the way including spouse, parents, children, siblings, extended family, friends, co-workers and many others. On occasion we take time to reflect on how they have made a difference in our lives and sometimes we let them know that we are grateful for the relationship we have.  Rarely, though, do we have the opportunity to hear from others how we have made a difference in their life.  Many times it takes a significant event for us to reach out to others.

As Wendi has been treated for leukemia I have had the uncommon experience of seeing, hearing and reading how so many people feel about her and the influence she has had on their lives.  It has given me a new appreciation for her and what a special person she is.  I think it has really boosted her spirits and given her strength a boost when it has slackened.

I agree with the many comments that Wendi is a strong person.  Before this experience we had been through some challenges where her strength of spirit showed through but were only warm ups to build her strength to get through this.  She has a great smile that she is willing to share with everyone.  She looks to lift others and help all to feel included and important.  At the hospital everyone who works with her from doctors to nurses and aides all look forward to the days that they are assigned to help Wendi because she has such a good attitude, knows them all by name, and tries to help everyone feel better.  She is the glue that holds our family together. She is our hero.

I would like to encourage everyone who reads this to reach out to their heroes and give them a hero shout out #heroshoutout.  Let them know how they have influenced you and made your life more rich.  It will be an unexpected and very welcome boost for them.

#heroshoutout
#wendiwillwin

Another Birthday and Happy Thanksgiving

In the transplant world, the day of your transplant is your second birthday.  So from now on, my second birthday is 2 days after Callie's birthday, on my neice Hillary's birthday and could occasionally be on Thanksgiving.  Happy Birthday everyone!

Today went well just as expected.  After a few pre-medications Scott's stem cells were hung on my IV pole about 1 pm. By about 1:30 we were done except for some regular monitoring.  Scott is my hero and gave me about 9 million(!) new stem cells. Almost a record for one day of collection!  

It has been wonderful to emotionally turn the corner from beating back cancer to healing from cancer.  Time will tell how much of a rollercoaster we are on but like my doctor reminded my today....I will take what each day gives my and remember that the next day can be completely different.

I am grateful this Thanksgiving for modern medicine and those who know how to use it to benefit me and my family.  I am grateful for all of you and your prayers and words of support.  They lift me more than you know.  I am grateful for a family that truly are friends.  I am especially grateful for my brother, Scott for Emily, Callie and Elizabeth and mostly for my rock, Loren.  I am grateful for a Savior who knows each of us and what we are feeling and for a Father in Heaven who loves me.

Happy Thanksgiving!

Chemo is done!!!!

This final round of chemo before transplant is done!!!  Woot! Woot!  Two different medicines over the last 7 days.  Today is a rest day getting ready for transplant tomorrow.  Crossing our fingers and praying our hearts out that this will be the last chemo she has to go through on this journey.

The march to stem cell transplant keeps moving on.  Wendi is now one day away from receiving her brother's blood stem cells that will start the long process to healing.  Unfortunately the countdown has been going slow as Wendi has been losing energy and fighting nausea more each day.  The last few days have been difficult managing the nausea as the medicines used make her very tired.  Her spirit continues to be strong as she faces the challenge of feeling poorly.

Even when fighting to keep her strength up and food down she is still the Wendi we know and love. The nurses have to measure everything about Wendi -- vital signs, weight, blood levels -- you  name it including her "output" in the bathroom.  She has a variety of nurses and aides that will measure the "output".  Yesterday she pointed out to me that she knows when the male nurse takes care of her "output" because the toilet seat is always left up after he is done.  Reminds me of the discussions I had with Wendi many years ago as I was being "trained" on proper toilet seat etiquette.

The docs here want her to do laps her a few times a day to keep her body strong.  After a few days here on this stay they came in a with a new program they are trying out.  They gave her a lanyard with step counter on it and a iPad that will keep track of the activity each day.  They want her to record 4500 steps a day.  Well they gave it to her and asked her to walk with the physical therapist and an aide the first time to see how she was doing.  They didn't know who they were messing with.  She took off at a good pace and logged 10,000 steps with the poor aide chasing her down the hall pushing her IV tree and the PT working to keep up.  Various people who work here commented that it was quite the site to see them cruising the hallways that afternoon.

Thanks for the continued prayers and support.  Wendi appreciates them very much and they help keep here spirits up.

If you have pictures of your Wendi's Fight Club bracelet or window stickers in action, please share them.

#wendiwillwin

T-7

The countdown is on!  7 days to transplant (T-7).  I am feeling good right now and just passing the time.  Nausea will come probably next week but for now I am receiving chemo every 6 hours around the clock for 3 more days and then I have a day of rest before another 2 days of a different chemo drug.  In talking to the nurse yesterday I relearned that my chemo targets fast growing cells therefore my bone marrow is a prime target.  In other cancers the doctors can only give so much chemo before it begins to affect your blood numbers.  With leukemia, the point of chemo is to bottom out those numbers so the doses of chemo are higher and hospital stays are mandatory. 
I did have the chance yesterday to meet some other patients on my floor.  They are incredibly strong and resilient!  I am blessed to be in this position with a strong body and a perfect match donor.  It is a rare thing....prayers are being answered and will continue to be.  
#WendiWillWin

More Rollercoaster Rides and a Plan

Loren and I looked at each other this week as we sat in the hospital room I had just been admitted to and commented that this is one crazy ride!  I got a phone call on Monday asking me to come down to the hospital and be admitted for at least one night.  The headaches which I had been having for the past 5+ weeks had changed and that made my doctors nervous enough to schedule a CT scan followed by an MRI.  Now they needed a neurologist to see me but the only way a neurologist can see a new patient quickly is to have the patient admitted to the hospital. (Insert your own comments on the healthcare and insurance companies here).  I was pretty sure that the headaches were due to the 5 spinal taps I had but my doctors wanted it taken care of quickly.  So, we sat in the hospital room, staring at each other and wondering what the neurologist was going to say.  After waiting for several hours the neurologist came and after a lengthy discussion of my symptoms she came to the conclusion that at least one of the 5 holes that had been put in my back was leaking spinal fluid and causing my severe headaches.  The best way to fix that is with a blood patch.  Since I am in remission and my blood is clean right now we decided to move ahead with the procedure the next day.  So, I spent a lovely night in the most expensive hotel in town and had the blood patch performed the next day.  I must have had a different reaction than most people...the procedure was fine but the rest of the week was horrible.  By Friday my headaches were gone but the pain in my back where the blood was injected was incredibly painful and is still not 100%.  After a rough week, I finally remembered what I had promised myself on Day 1...I was going to choose to be grateful.  I had forgotten that and the week was more miserable because of my attitude.  So today I am grateful that I don't have those horribe headaches any more!

The Plan
Now that I am in remission, we have a plan for transplant.  I will be admitted to the hospital on the morning of Monday, the 17th.  On Tuesday I will begin 4 days of chemo, followed by 2 days of rest and then 2 more days of chemo.  Yes, this chemo will be just as aggressive as the last round I had.  Then on the 26th, the day before Thanksgiving and continued on Thanksgiving day the infusion of my brother's stem cells will happen!!!  I am excited to be at this point in my treatment.  After the infusion, it is more of the same ride we have been on but with a twist.  I will need to wait for my numbers to come back up, which in this case means that my brother's stem cells are making blood for me!  The twist is that we will need to guard against but almost plan on some form of graft vs host disease.  This new twist will be part of our lives for at least the next 2 years.  Depending on the type and severity, I can have an extended stay in the hospital and/or be readmitted after coming home.  So, the rollercoaster ride will continue.  I am glad my family is with me as we go up and down...they are my peace and my sanity.

A Return to Church

As most of you know, I and my family are members of the Church of Jesus Christ of Latter-day Saints.  In our church we do not have any paid clergy and all of us at different times are asked to serve in different positions so that our congregation is taken care of and services happen each week.  For 1 1/2 years before my diagnosis I had been asked to serve as the president of the Relief Society (our congregation's part of a world-wide women's organization).  As a result of this responsibility I grew to love and care deeply for the women in our congregation.  I knew some of their struggles and mostly of their faith and love for their families and for Jesus Christ.  

With a diagnosis of leukemia there is no time to let your mind wrap around what this means to your family or your life.  There is not time to consider what type of treatment to have or to make arrangements for the other obligations in your life.  There isn't time to even prepare your family.  AML is so aggressive that everything is fast tracked.  I was diagnosed and admitted to the hospital on Saturday and chemo started on Monday.  

Because of these circumstances and the following isolation to protect from getting germs, I was unable to talk with the women I served with, I was just gone.  I was unable to return to any church activity, even attending our sacrament meeting for several months.  I was able to have the sacrament administered to me in the hospital and at home so I felt as if my relationship with Jesus Christ was still growing, but I missed attending my meetings on Sunday and I knew it was impossible for a while.  My activity within my congregation is a central part of my life and service to others.  To have this along with everything else I was involved with removed with no warning was difficult and the resulting isolation has been a challenge.  Thankfully I have had wonderful friends along the way who have recognized this challenge and helped me feel connected to a larger community.

Then, last Sunday, October 26, we decided to launch Operation Get Mom to Church.  My family saved the last row in the chapel and some friends sat in front of us so I would have a barrier around me to protect from germs.  My plan was to arrive during the opening hymn and leave during the closing hymn - again to protect from germs.  (If I could I would stay and give everyone a huge hug!)  So, I put on my dress and a scarf and drove over to church.  Emily was waiting for me to show me where they were sitting.  As I walked into the chapel with everyone singing I was overcome with a feeling of coming home.  The tears came without warning and with no stopping.  I knew I was in a room where people lived the gospel of Jesus Christ - they cared for and loved their neighbor as themselves.  They, along with all of you, had done this for me and my family.  I am so grateful to be a part of so many communities that are filled with people who are so amazing and selfless and who live as Christ would have them live.  God was able to give me a glimpse of heaven that day - to be surrounded by people who love you. Thank you for loving me and my family - heaven is complete when everyone I love is there.