Together and Resting at Last

Today was hard for me.  They have set the stone on Joshua's grave and he chose to have his sister Micah's name beside his.  It is the first time we have been able to remember her on her birthday.  I have always regretted that we did not choose burial and had no place to go for her.  We took flowers, white for both and a few sprigs of blue for Joshua and pink for her on her birthday.  I took the small teddy bear we were given when she was born at the hospital.  I gave it back to her today.  I miss them both but rejoice that they are together.   As we took pictures I thought that my children were all close together today.  How bittersweet it was to be there.  It was good to do this and feel that we had finally finished all the things we needed to for Joshua.  I truly know he is at peace and with his sister.  I am so grateful for this knowledge, it carries me on hard days.
We are happy, we look for joy in all we do daily.  I have completed a memory wall in our front room with pictures and memory items for Joshua.  Anyone who would like to see it is welcome to come by anytime.  I want to tell you that things are great but we are still sad so much.  Going to the cematary today broke my heart but felt like the right thing to do.  I feel like Micah is finally resting and at peace.  It makes me so happy to think of the two of them together.
We love you all and are so grateful for the continued support as we navigate this confusing road.  I hope you don't mind a few pictures.

One Last Post

  Today is the Sabbath and a quiet day to reflect.  I have so many emotions.  The most important is gratitude for my Heavenly Father.  I have thought so much about my children and the precious gift they are.  I have 2 children that are safe and with their Savior.  I know they laugh and are doing wonderful.  They are healthy and happy and they have done all they need to on the earth.  I think of them both often and remember all that Joshua taught us on his journey.  I am grateful for Micah and that she was willing to be the first.
  I also look at the 4 special children still with us.  They are amazing.  They have handled this with grace and strength beyond my own.  I listen for their laughter and pray they have joy.  Yesterday we drove to Brigham City to go to the temple with the children and it was so much fun.  We stopped at a couple of fruit stands and bought apples and peaches and had fresh peach shakes.  We made jokes and teased and it was wonderful.  When we came home we went to a farm and picked tomatoes and bell peppers and beans.  It made me so happy to have fun.
  What I want to say is that some days are sad and will be for a long time.  Some days are busy and some days are frustrating.  But if there is one thing I hope we will all learn and remember it is that family is everything.  The family with us today, the family of our childhood, the anscestors we never met.  They hold us together and we need to make time for them.  Joshua knew that family was everything and he loved fiercely!  Our family is now smaller but amazingly enough it so much bigger.  Old friends and new, we are blessed beyond measure.  I pray you will all love your family more tomorrow than today and always treasure them.  We treasure you!

Information

I would like to give the final arraignments and information that many of you have asked for.  I am sorry that I have not responded personally but I am overwhelmed right now.  I love you all.


Ok, here  it goes:

There is a viewing on Friday night from 6 - 8
Another viewing on Saturday morning from 9-10 and the funeral will begin at 10:30
All of these activities are at the Clearfield South Stake center. 
The address is 2186 South 125 West Clearfield UT
It is on 2200 South just West of Main street

Please let me say again,  ALL are welcome and we are excited to gather to celebrate Joshua's incredible life.

The funeral home is Lindquist Mortuaries   Their website is lindquistmortuary.com
that is were Joshua's obituary will be.

If you wish to send flowers you can call Jimmys flowers in Layton at  801-773-8400, ask for Susan Richey

We are holding on right now with your prayers and love and are sooo grateful for everything and all  the support we are being given.

The End and a New Beginning

On Saturday Josh took a turn for the worse.  He began to slip in and out of consciousness.  We called our Bishop and Stake President and they came.  He didn't seem to know them but then our Stake President put his hands on Josh and gave him a blessing.  At the end Josh clearly said Amen and Thank you.  Those were his last words.  He lingered for one more day so our family could quietly spend the Sabbath together and then this morning at 10:30 he left us.  He fought hard for every breath and never gave up.  It was very hard to see him struggle and broke my heart but I could not be prouder of him.   Within minutes of his passing the kids in the neighborhood heard and came.  What a joyous site to see his body finally resting and 8 or 9 teenagers standing around him quietly visiting.  When the adults came in they all went to the kitchen and polished off 2 containers of ice cream and every popsicle we had!  How Josh would have loved that.

We now look to the future.  Joshua is were he belongs and no longer hurts.  I know he is at peace and I am so grateful to know that I will see him again.  We are having a funeral on Saturday at 10:30 and I will post the address and info later.  We are asking everyone to come.  This is a day for family and friends and we want you all to be a part of it.  If you can come we have plenty of room for you to stay.  Our wonderful ward family has offered their homes and we have room for everyone, please let me know.
We are grateful to know that Heavenly Father loves us.  He loves Josh and I know he is proud of him.  I could not let him go if did not know that he was loved and is being cared for by his Heavenly Father.  He rests with his sister Micah and other family.  I have longed for my children to meet my father and today Joshua did.  We are peaceful and sad and grateful all at the same time.  We ask for continued prayers and welcome all to come visit.  We love you.  Joshua loved you too.

Waiting

Time is standing still.  Hospice sent a doctor to examine Josh because the nurse is seeing conflicting signals.  He shows signs of decline but doesn't really change.  Parts of his body are dying but his heart beats on.  The doctor shrugged her shoulders and said he is young and has a strong heart.  It is hard now, he suffers.  He is sick in the morning and sleeps all day.  He gets up for food because we make him to keep him from getting sores but then goes back to sleep.  When he is awake he gets restless and cant figure out what he wants.  Yesterday he cried himself to sleep in the late afternoon because he could not settle down.  
The doctor said it right, he has a strong heart.  He is still making a difference for others and I am grateful for his strength.  It breaks my heart to see him suffer but I know that Heavenly Father knows best and I must be patient.  His favorite thing now is on Sunday when the priests (that is the boys his age) come over for their lesson to our house and bring us the sacrament.  He can't always stay awake but he musters up the strength for that and loves it.  What wonderful young men they are to care for him and keep him part of the group.
We are amazed by the support we have been shown.  So many people have cared for our family and are trying to help us.  We don't even know how to say thank you anymore, it seems so little for all we have been given.  I am humbled and want to remember all of this. Thank you.
We don't know what tomorrow will bring but we will follow Joshua's lead and hold him tight for as long as we can.

Changing Times

Josh is beginning to drift away.  He sleeps till noon and then sits for about an hour and then goes back to sleep.  If we are lucky we get a couple of hours at dinner time and then he is back to sleep.  He can no longer stand without assistance.  Activities out of the house are not possible now and we are asking that if you want to visit please call first to see how he is doing.   He still wants to see people but we don't want to stress him now.  We think he still has a little time because his vitals are stable and he is still eating but that time is short and we will keep you posted as it moves forward.

We are grateful for all the fun we have had and the memories we have made in the last 2 months.  We feel the love of so many people and especially the love of our Heavenly Father.  We are as ready as we can be to begin this new part of the journey.  We plan to take it one day at a time and let Josh lead us.  We have talked to him about the next steps and given him our blessing to go and we are listening to the spirit for guidance.  I know that our Savior is close as we move forward. 

I have a testimony that God loves our family and has a plan for Joshua.  I am so grateful to be his mother and walk with him on his journey.  I will never be the same but I pray to be better because of him.  I also pray that the many people he continues to touch will feel the same and come closer to Heavenly Father.  In a world of hate and anger I want everyone to learn to love like Joshua does, simple and pure.

Please come visit if you can and we will be glad to see you.  480-720-9856

Highs and Plateaus

     Well I am not sure what to say today.  So much has happened but nothing has changed.  We have had some really high moments in the last several weeks.  We went on a helicopter ride and horseback riding and even got to ride in a side car with the coolest bikers ever to Antelope Island.  We have been to 2 more temples to do baptisms (Logan and Provo City Center).  We loved everything we have done and it has been amazing.  The highlight for Josh was a visit from a member of the seventy, for our friends that don't belong to our church that is a general authority.  He was sent by our prophet to visit our family and Joshua.  As a mother I can only say I am proud because I could see how impressed he was with Joshua and his love of the gospel.  It was a powerful visit and we were left with a strong sense of love and support from our church.  He gave Josh and Gordon and Ted ties.  They are a solid color and have what appear to be dots on them.  When you look closer they have panda bears all over them.  Elder Sabin says no one can be unhappy with a panda.
     On the other side of the coin we are unchanged healthwise.  He is very tired and confused sometimes.  He is just going day by day.  We have increased his medicine to help with some pain he is having.  His legs hurt at night and he is getting more anxious so we added meds to help with both and he is doing well.
     I sometimes wonder as his mother about the purpose of this time.  I don't want him to suffer and I know he is ready but I see the work he is doing here now.  He rarely goes anywhere without touching someone.  I see that others still need him and so do we so I am grateful for this time.  I am grateful for the tender mercies of the Lord, I see how all this is all working for a purpose so I am trying to be patient and see where it leads us.  We are sooo grateful for the friends we are making and have already around us.  We have been getting letters and gifts for Josh from around the world from our wonderful biker friends and they make me cry.  Josh loves it and in the end that is all that really matters.  Please go hug your families and do something they want to do that you think you don't have time for.  As Josh would say - Have At It!

Changes and Explanations

Well, I am sad to post today.  Josh has begun declining.  He is getting confused now and very tired and the swelling from the steroids is extreme.  I want to explain some things.  We are still doing activities and he is still having fun but there are some things I want to say.  He is losing his affect.  That means that he doesn't always smile or respond appropriately and it is hard to tell if he is enjoying the activity but I promise he is.  A good example is Ragnar. Our friends ran a 200 mile relay race and dedicated it to Josh. We met them at the finish line and when they came in he got to cross the finish line with them.   He loved it but didn't respond much.  But when we helped him stand and cross the finish line his smile was wide and my eyes were filled with tears.  It was a good day and a special time for him. He is struggling now to focus on things but still has goals and we are just moving forward day by day.  He doesn't get up much before 11am but the best time to visit is before 3, that is when he is the most alert.  Also, small groups are best now he can't handle too much at once. 
      We are making each day count and want you to know how much you all mean to him and us.  Ted asked me how much longer Josh had and I told him we don't know but think it is getting short.  I feel such peace and we are just praying now that he doesn't suffer and can be happy.  We want to let you know and ask for you to pray for us to have strength and be strong enough to do what we need to.  Josh said he is a little afraid of what is coming and I told him it was like a little one at the pool.  Dad is standing in the water and telling them to jump but they are scared to do it.  When they finally jump it is wonderful and they beg to do it again.  I told him not to be afraid to jump and his Heavenly Father would catch him.  He fell asleep after that and I think it helped.  I am grateful to find the words when I need them and know that we are being guided everyday.  This road is long and hard but I am so grateful we don't walk it alone.

Pictures and Memories

This is what you look like after a wonderful day meeting new friends and having fun!  Josh loved going to the Hill Air Force Base Fire Training.

He Made great friends and that hat he is wearing was a gift, all the firefighters signed it!

He loved being in the truck and even got to work a water cannon on another truck!

 Yes he is in that basket, way up high.  As I watched I said to a lady on the ground "you could never get me up there".  Apparently he told the firefighter in the basket at the same time "you could never get my mom up here".  Hahaha, we do think alike.

The amazing thing about today was not how much fun he had, or the cool toys he got to play with, or even what we saw but it was the people.  The people who made it happen and the love they showed us.  They are so wonderful.  I know it was a lot of work to have us and they didn't even know our family but they heard about Josh and jumped at the chance to spend time with him.  We are amazed at how much they did and how great it was.  I find myself saying Thank you again and knowing how inadequate it really is for all we are being given.  I know they will be blessed like we were blessed today!

A Night to Remember!

I do not even know where to start!  Tonight was beyond wonderful.  Our stake wanted to do a dance for Joshua and we started the night out in a limousine.  (Every thing we did tonight was a surprise for him.)  He just looked at it and said, "is that for me?"  He has always been sad he could not drive a date himself so this was the best I could do.  Once he got to the dance he could not believe how many people came.  All night long kids kept coming up to him and telling him they thought he was great and he said on the way home, Mom, I am not sure who everyone was!  Then at quarter to 8 they crowned him king and his date queen of the dance and gave them both a crown.  They took them out for pictures and while they were gone Gentri set up.  When he came back in and the crowd went wild for him he looked amazed but you should have seen his face when Gentri began to play!  He kept looking at me, first because he couldn't believe it and then because he still couldn't believe it!  All he could say was wow.  The band called him up and gave him a pocket square and other gifts and he just stood there in disbelief.  They asked if the could go back to playing and Josh said in Josh fashion, "have at it".
A couple of things stood out to me tonight.  One, Josh is so humble he still can't figure out why everyone is fussing over him.  He was amazed.  But I know he is amazing!  Two, we can not thank the people who are supporting us enough.  It is hard to explain what this journey is like, we are so overwhelmed.  A hug or kind word makes all the difference and we feel wrapped up in love!  To have Gentri and their wonderful crew put all this time and effort into tonight,  to have dozens of people thru out the stake organize, plan, and work to put on this great night was truly a testimony to the power of love.  Thank you, thank you, thank you.  This is a night to remember and I know my family goes to bed tonight with visions of stage lights, sounds of cheers, sounds of song, and so much joy. 

I can not explain it but we have peace.  Nights like tonight that go off without a hitch are something to marvel at.  I know that Heavenly Father is leading the way and carries our family thu out this trial.  I wish I could say where this is leading but I know that I don't need to know, we just need to live today and then tomorrow if we are lucky.  Today was a good day and we are thankful for that!

Cruising Right Along

I thought I should update you all.  Josh is doing wonderful.  We got hospice started and they put Josh on steroids.  The change was immediate.  He doesn't have the headaches and has a little energy.  He is able to do a little each day.  We have been enjoying our time.  So much family has been able to come and we are loving it.  There has been almost 20 cousins and countless friends and other relatives that have come to visit we have made treasured memories.  I am putting a picture on from the most recent group of cousins that are here now.  We feel that Heavenly Father is blessing him to be able to spend time with family and finish up the things that are important.  This coming Friday is a dance at the church and it should be a wonderful night.  The youth at our church love Josh and want to have a prom for him.  We are hoping it is something they can all remember for many years.  We can not express how grateful we are for the many sacrifices that have been made so that everyone can come on short notice and the many people who have changed plans and put countless hours into events for him. 
This is a hard time but blessings come daily.  The biggest one is seeing the people that love our family.  We are so grateful for their support and strength.  I lean on it when I feel unequal to this trial.  Thank you for everything.  That sounds so small next to what we are being given.  We love you.  Please keep praying, we are grateful for this time but it will not last forever and we want to enjoy it and never forget this blessing.  I hope you all remember that family is the most important thing and to love your children a little more today.

Fighting On

Josh never stops fighting!  He has been struggling this weekend, the headaches are back and he woke up this morning throwing up.  But when it came time to go to church he was ready and happy to go.  He went to the temple on Friday and was so happy there too. 

He took his cousin for the first time and Ted and his Uncle Brian went too.  They were sure a good looking bunch!
Josh has his priorities straight.  He finds the energy for the things that he thinks are important and makes them happen.  He is so tired but doesn't give up.  I want to freeze this time and hold onto him forever but I know I can't.  I can only remember his example and smile and keep it in my heart.

The Final Answer

We got the news we already knew.  The pathology is a Glioblastoma Multiforme 4.  That is the most aggressive tumor there is.  Sadly we were told that they have proof that the tumor was caused by the radiation he had 8 years ago.  The double whammy was that they did another MRI this week and the tumor is almost as big as before surgery and it looks like it is pushing the brain out of its normal location too.  That means it is fast growing and even more aggressive than normal.  With this information they are thinking 90 days is top of how long he has.   The doctors suggested radiation as a possible treatment.  We went to the appointment with the radiation oncologist thinking that was a route to try.  However we have prayed and it doesn't look like we are going that way.  It was so hard on Josh the first time and he doesn't want to do it again.  Also it is a six week commitment every day and if it only buys him 2 months what was the point.  The biggest factor is that Josh is so tired already we just don't think he could handle it.  If this treatment could offer a cure or even promise a reasonable amount of time we would do it but there is no guarantee that we will get anything and the cost is high. 
I am very calm and peaceful.  It doesn't mean I am not losing it, I showed up at a friend's house and cried for 40 minutes.  What it means is that I am confident that Heavenly Father is in charge.  We will trust him and enjoy every day.

On to better news.  Tonight Joshua was honored by the Boy Scouts!  They have a dinner called the Gathering of Eagles and we attended and the council recognized him and presented him with an award.  They are sending a scout that could not afford camp on their own to camp in Joshua's name.   They told his story and when they were done the people who attended the dinner (about 200) spontaneously gave him a standing ovation.  Seeing others recognize him was so wonderful!  We managed to surprise him and it was great to see him blush and smile.  After the event people could not wait to shake his hand and tell him they thought he was amazing.  A couple even wanted pictures!  It was a good day and we spent it as a family.  We want more of those for sure but this one will last for a while it was so fun.

I would ask you to keep smiling, have fun, and remember what is important.  We are enjoying every minute we have and are greatful to have them.  We love you and appreciate the support.   This journey is hard and so many of you are making it seem easier with your love and food, and visits.  We love you all.

More Surgery and Updates

Ok, I have been waiting to post till I got all the answers.  Still don't have them.  But it is time to share what we know and the next challenge.
First off Joshua is having headaches again.  Today they did another CAT scan.  The ventricals are enlarged.  This is not good news because we were hoping to get a few months before he had a lot of fluid back in the brain.  Instead we got less than 3 weeks.  On Monday they are doing surgery to put in a shunt.  It will relieve the pressure and he will not be in pain.  We should only be inpatient for a couple of days and then we will be home again.  So while this sounds bad the outcome should be good.
Now, lets talk tumor.  There is debate among the pathologist and his tumor has now been shipped across the country and back 3 times.  We are waiting for the final answer.  We do know it is between 2 tumors.  It is either a true reoccurant Medulloblastoma or (and this is the direction they are leaning) a Glioblastoma Multiforme 4 (GBM4).  The outcome is the same.  The treatment options are close but different. The big difference is that the  Medullo will spread to the nervous system and the GBM doesn't spread but grows and reproduces locally.  They want to do radiation again and the doctor says it will not be bad this time but Josh doesn't want to do it.  We will not make any decisions till they have a final decision on the tumor type.  Because he has had treatment before there is not a set treatment for either tumor so there will be a lot of choices.
What does all this mean?  There is no cure possible for this now.  Any care we give is palliative.  What that means is that treatment will buy him time or limit suffering but that is all. We asked the doctor about time frames.  She would not be specific but said it she lost a patient like Josh at 90 days.  We are basically looking at 3 months to a year.

Please hear me clearly.  This is in the Lords hands.  Only he knows Joshua's time.  Josh knows he is terminal but we have not given him the time frames.  Josh has asked about dying and we are slowly preparing him.  We have taught him in recent days that death is not the end but the beginning of his journey.  When Heavenly Father takes him it will be because he has done all he needs to on this earth.  I know he is ready and now we are being taught by him.  Each day we are learning and grateful.  I am profoundly sad and have moments that I ache but we are taking this one day at a time and there are so many things to thank God for.  Heavenly Father has given us time.  It is the most precious gift he has.  8 years ago we could have lost Josh and if we begrudge him going now we forget that gift.  I intend to cherish every day going forward and try to make the best choices we can.  Maybe some of them will not make sense to everyone but we are working hard.  We want to honor Joshua and his life with joy not sorrow.  Not that we don't feel it but the joy has to be more.  Please, for however long we have we ask you to pray for us and laugh with us and have joy.  Have joy with your family and if you can come see us and have joy with us.  We have empty rooms with beds so there is no excuse!  We love you all.

Overwelming Support!

One thing we are quickly learning is we are not alone!  When I knew I had cancer I thought we can have a yard sale.  We have done that before and I thought " I can do that " to help.  I foolishly thought I could fix things.  I put the word out and thought if I get a few donations that would be great.   When Josh got sick our friends took over.  First came donations.  We filled the garage and the porch and the back patio and then the neighbors garage.  Then came the help - friends came and never left today.  I sit here and weep to think of all that was given...it was beyond anything anyone could imagine.  I could do virtually nothing and no one cared.  We sold more than I have ever seen at a yard sale and still had 3 trailer and 2 truck loads to donate to DI (the local thrift store).  I can't help thinking of the Savior feeding the 5 thousand.  Truly my family was fed and there was more left over than began.  The money made is indeed a blessing sorely needed but it really wasn't about that, I feel truly loved and humbled and taught today.  Heavenly Father loves us and doesn't leave us alone and I am reminded that I don't have to do everything  - Heavenly Father can do anything and he is in charge.  I need to remember that his plan is perfect and I need to let him lead me. 
I am grateful for friends and family and strangers.  Today I saw angels.  They surrounded my family and bore us up.  We have so much to be grateful for.  All I can say is thank you....it seems so hollow and small but thank you so much.  It makes me cry to say it and I don't know what else to say.  My family is my life and I am overmelmed.

Home Again, Home Again, Gigidy Jog

My son is a miracle!  He had emergency brain surgery on Monday night and is home!  We came home yesterday (Thursday afternoon) and he is doing so well.  He will have to be down for about a week but can then go back to school.  We will send him in his wheelchair, if he got bumped he would be in trouble, but he should do fine.  Right now he has no real impairment.    We are seeing our pediatrician this morning and then we can rest till next week when the pathology comes back.  After that will be a bunch of appointments and lots of hard decisions.  We found out that the surgery was not as successful as the doctor had hoped.  There is still 25% of the tumor left.  It can be hard to tell where tumor ends and brain begins.  I have assured the doctor that we think he did amazing, if he had probed further Josh may have lost his ability to walk so we really think he did great.  He discussed another surgery but we are not leaning that way and will not do anything till pathology comes back. 
     We were blessed to have members of our stake presidency come by and give Gordon and I blessings last night.  It was a beautiful reminders of our role in this.  I think I will probably say this every post but I am so blessed to be Joshua's mother.  He teaches me every day and it is an honor to walk with him.  God lives, he loves us and I know he is mindful of Joshua.  That is enough for me.

A New Day

Good morning.  Joshua is doing amazing!  We got out of the ICU yesterday.  That meant removing his central line (IV sewn into his neck) and his art line (arterial line sewn into his wrist).  We got another MRI, although it was 3 hours late and didn't happen till dinner time, but have not heard results.  It was done so late it will be read by radiology this morning.  Even without that he is doing so well the fellow (specialist in training) wanted to send him home this morning.  The nurse had to stop him and remind him that Josh is not eating and drinking yet and still needs IV support (he still has 2 lines). He is allowed to eat he just has no appetite. I am waiting for the results of the MRI and we are encouraging him to eat but we are hopeful to be going home soon.
We met with Oncology yesterday and we do not have a plan yet.  We need the results of the pathology to make one.  We discussed options and there are many tough decisions ahead.  She said any treatment needed to start within 21 days of surgery but they try to go sooner so things will happen very fast.  Social work came down that is standard and we are waiting for a physical therapy consult too.  They cut the muscles in his neck to get to his brain so he can not turn his head well right now and is very weak.  Once again, in the brain tumor world, he is a rock star.  Many kids can't move for a week after surgery and he walks to the bathroom unaided.  I am going to put him in a wheelchair and take him for a ride later this morning to try and get him alert and maybe hungry.
We are so grateful for the support of our ward family.  They are literally swarming us with food and people to take care of the children.  Our lives are crazy in the best of times and that makes it a monumental feat right now so we know what a sacrifice this is.  I have been out of touch and I am truly sorry about that.  I feel very much that I have to be here at the hospital not only physically but mentally.  Joshua needs my attention 100 percent to come to grips with this all and honestly it is all I can focus on.  We have decided to postpone the yard sale for a week (it is supposed to rain anyway) and I can not worry about it.  This morning Joshua and I had a wonderful talk about journeys.  I reminded him that each of us is on a path in life and this is his path.  I can not tell you how grateful I am that I get to be his mom and walk with him for a while.  I think he is slowly understanding more about where he is on his path but we are glad to let him figure that out in his own time.  He is very worried about this time being like last time where he felt isolated and couldn't do the things that he wanted.  I assured him it would not be and we would make anything he wanted possible if we could.  I would love any visitors that can come, just call first to be sure if we are here at the hospital or if they kick us out, at home.  He needs to know that he has friends and family and be reminded that he is loved and needed.  He needs as much normal as we can give him!  We love you all, we could not walk this path without you!

Joshua's Turn

This post will mostly be facts.  They just took Joshua into surgery (4:45pm)to try and take as much of the tumor as possible and to relieve the pressure on his brain.  If it doesn't do that they will, put in a drain temporarily.  He has a large tumor, at least 3 cm, in the cerebellum.  It doesn't have good margins so they do not believe they can get it all but will try to get as much as possible.  There is a second smaller tumor as well and they just don't know till they get in about that one.  We do not know if it is a medulloblastoma or a new tumor type.  That info along with some treatment plan will come in about 10 days.  We know he can not have radiation again and that some chemo will be necessary.  The surgery is expected to take 5 hours minimum.  After that he goes to ICU for a day and then a room for a week.  I will post a note on facebook tonight that he is out of surgery and stable and then post here again when we get out of ICU.
We found this because he had some sharp pain when he was moving and then a dull ache for about a week and then on Saturday he began to be dizzy and lethargic.  I knew what it was but kept hoping that I was over reacting.  Sadly a trip to the ER on Sunday proved I was not wrong and that there was a lot of pressure on his brain.  An MRI this morning confirmed our worse fears.
I am heartbroken, lost and frightened.  This will be a hard road and I know from the past there will be a lot of suffering on this road.  I am holding on to his patriarchal blessing that reminds me that this his path and Heavenly Father loves him.  I know he is a special spirit and we are sooo blessed to have been chosen to be his parents.  We are back to a place were we are living one day at a time and just trying to be hopeful and prayful and when we can we will be joyful.  Thank you for the prayers and love.

Return from the Dead

I am alive!  I have been home from the hospital since Monday (apparently this is an outpatient procedure) and we have been surrounded with food and flowers and gifts.  I am not hurting too bad if I am careful and able to sit and visit.  I have one drain and look horrible but it is not too bad.  I want to thank the many people who have stopped by and brought meals and flowers.  I have not written before  this because I am afraid to jinx it.  I am still holding my breath.  I want to heal well and know that this will take some time so I am being cautious.  But today someone said they had been wondering how I was and I realized I needed to post.  I will keep doing what I have to and appreciate the continued prayers. 
I am humbled by the love I have been shown.  My body looks so bad now but never have so many made me feel beautiful.  I am beginning to see what beauty truly is.  It is not about how we look but the strength of our hearts.  I hope to heal quickly and get back to the work of being beautiful.  Thank you.

I am Back!

I am excited to say I am done whining and feeling sorry for myself.  The hardest part of this is that this cancer and the doctors have made all my choices.  I want my girls to see a better way, I want them  to feel good about themselves no matter how they look and to be powerful.  So today I made my first choice...I cut my hair.  17 inches came off to donate to make wigs for kids and I feel so different but for the first time in  long time, I feel like myself.  I hope you like it!

Surgery and Answers

I find myself wanting to start with good news but I just don't feel like there is any.  My genetic test came back negative.  That should be good news but then the doctor said that means there really isn't any reason for my cancer.  It just happened.  That is a hard pill to swallow today.  Because of that they are only taking the left breast.  That should also be good news but since I don't get to do reconstruction that means I will be lopsided.  I will end up flat on one side and too big on the other.  Surgery is scheduled for Monday  the 21th.  I will have a drain for about 2 weeks and then I will need another 2 before I go back to work.  Then it will all be over.  No cancer, no other surgery, no treatment needed.  I feel empty, like I will never be whole again.  So many people have said that I am lucky that I don't need chemo, and that is true.  I am sure many will say wow, you don't need to lose both breasts and that is true.  I will heal faster without reconstruction, that is true.  I am lucky I found it so early, that is true.  So why don't I feel lucky?  All I feel is tired.

So where does that leave me?  I get through it, I keep walking forward.  I keep praying and trying to do my best.  I thank God for my blessings and let the rest go.  I look for ways to serve and be needed.  I know I don't know the reason for all things.  But I need to be patient and wait.  I want to say  that  I know that God lives.  I know that there is a plan for my life.  Man is that he might have joy.  So go laugh a little and I will work on being more grateful.  I will stop whining and find a way to be more happy.  I didn't have a choice to have cancer, I don't get to choose how to deal with it.  But I can choose to be happy.

It's A Low Point

Today was one of the lowest points of my life.  My surgeon sent me to a plastic surgeon to plan reconstruction.  I have been on the fence but felt like when I talked with the doctor I would know what to do.  Well, I know now. 
I went into the appointment.  A resident came in an talked about the options.  She was very nice and said the doctor would come right in.  We waited and he came in.  He sat down, he never examined me, he didn't ask any questions.  He told me that obese people can have complications like infection and that I should wait till I am at my "optimal weight" and then he would be glad to do a reconstruction.  I was shocked, I said that the reason obese people have more complications is that they generally have diabetes and high blood pressure and other problems but I don't have any of those.  He then told me "well if you do really good during your mastectomy maybe we can talk about it but I should lose at least 20-30 pounds first"
I have never felt so bad.  He basically told me that because I am fat I don't matter.  I feel like I have let Gordon down (he says that isn't so) .  I have never felt good about myself, never felt pretty, but having this cancer and the prospect of losing my breasts has been really hard.  I feel like I will be scarred and ugly.  Now I feel worse.
The upshot of it is that I will not be doing reconstruction.  I can not do it now, it is too hard.  Knowing what people think if me hurts so much, I could not possibly face another doctor.  I will meet with the surgeon on Monday and plan the surgery and move on from there.

I know Heavenly Father loves me but today I truly wonder why.  I feel like I just keep falling short.  Tomorrow will be better and I will try to do and be better but today was not so great.

Good News, I think!

Results are in and it is good news.  The spot on my right side is not cancer!  That means that right now this is confined to the left breast.  There is a good chance I will still lose the right breast but the genetic studies will play a big part in that so we will wait to see.  As for the left the news is a  mixed bag.  The area on the top that they biopsied is not cancer at all.  But the area on the bottom is.  The good news is it is DCIS.  Ductal Carcinoma In Situ is cancer that has not spread beyond the ducts of the breast.  It is very common (finally) and because it is non invasive- (wait for it)  NO CHEMO!!!  If they were going to try to save my breast I would need radiation but the area is huge and she says a mastectomy is the only option.  I am sad but relieved but grateful but worried....
I am so grateful to escape without chemo, I think it would have been too hard on the kids to see.  But there are still unknowns, will they take one or both, what will it be like, will I ever feel normal again.  Before  I got sick I used to think women should be grateful and a mastectomy was not a big deal (they can reconstruct).  But I was wrong, it is overwhelming and very scary and hard.  Besides being major surgery and no matter how many women you talk to who have had one, you just don't know what it will be like. 
Ok, dates.  I go next to a plastic surgeon who can discuss reconstruction and will give me an idea about how long this will take to complete and put behind me.  They will call next week and make an appointment quickly.  The genetic studies have a latest date for results of March 4.  And then I meet with the surgeon again and set a date for surgery.  Probably Mid March.  I will be glad to get this out of me.  How long recovery will take, it is too soon to say.  We still need to make decisions that will affect that timeline.
I think I am lucky. (Gordon would say blessed and he is right)  I found this very early and it has not become invasive yet.  I have felt Heavenly Father's hand in this that it did not progress and we can still manage it and get rid of it.  I am grateful that I am living where there are such good doctors, not just to diagnose but to care about me.  She called late yesterday and I know she could have been home with her family but she stayed to make the call, it meant a lot.  The support from so many friends and family is overwhelming and I can not say I am grateful enough.  I hate that cancer is in my life again, I hate this monster, but this time I can beat it.  Keep praying, we still have decisions and hard days ahead but today was a good day and I will take it.

One in a Million - Again

Ok, so I get that I am rare but this is getting ridiculous!  I asked the doctor how many people have to have both sides biopsied at the same time.  She said less than 20%.  Then she broke the news to me that the area of enhansment on the left side was large and they needed to do 2 biopsies on that side alone.  So it was 3 biopsies today.  Oh and when they did the MRI after they saw a hematoma on the left side and had to suck that out.  Oh and they place small tags at each site of biopsy and the gun did not deploy the tag on the right side so after the procedure I had a mammogram to make sure the tags were in the right place there was no tag at all and they had to go back in under ultrasound and find the right spot and place another tag.  Needless to say it was bad.  She said that maybe once a year the tag doesn't deploy and so with all of it together it was pretty rare and I was pretty overwhelmed.  I am having a lot of bleeding if I move at all but that is a good thing cause moving really hurts.  I am praying tomorrow will be better.  The only consolation of this is that it is done.  Now we wait, I was told originally Friday for results but now I hear next week sometime.  The waiting is hard.  I just want this to be over but I know it is a marathon not a sprint so I need to be more patient.  I have hard choices in front of me, reconstruction, surgery.  I have been all over the place with it and I don't know what I should do but I have been asking good friends for advice.
This is were faith comes in.  I know that when we finally sit down with the surgeon I will know what to do.  I know that doors are opening and this is for a purpose.  I know it sounds funny but today was hard but one of the doctors that worked on me was a fellow.  That is a doctor that has his license but is training in a specialty.  The spend a year or more studying for that field specifically.  I realized on the way home that today he saw something he would not normally see and was guided by a seasoned doctor on handling it.  Someday he will have another woman with this and he will know what to do and will be confident.  That makes it worth it.  I am grateful that Heavenly Father is mindful even if it hurts and I am overwhelmed, he is not.  He has a plan and I just need to do my part.  Please keep praying that I can handle my part and I will just keep holding on.

Welcome to my Rollercoaster!

So we met the surgeon on Wednesday.   Both Gordon and I felt good about her.  She has been doing this for 25 years.  She told us all the possibilities.  If the tumor is aggressive all bets are off and chemo is on the table.  If it is not then surgery and radiation will do the trick.  But.... there are some problems.  I have a family history that is not so good.  My grandmother and my aunt both had breast cancer and 5 years later it metathesized into bone cancer and they passed.  My uncle had the bone cancer and he died too.  My father and his mother had pancreatic cancer.  Surprisingly enough she said that the pancreatic cancer was in the same family as breast cancer.  So basically I have this beast on both sides.  She did the genetic test for the mutation but said that my chance for reoccurring could be as high as 65%.  She said we need to consider full mastectomy.  But no results on the biopsy mean we wait.  Oh, and just to keep us busy she ordered and MRI of my breast too.  (let me tell you - not fun)

Fast forward to today.  She finally called.  Great news, the tumor is nothing!  Not aggressive, no receptors and looks like a non event.  But (wait for it) the MRI was not so good.  they found a large area of enhancement deep in my breast.  She thinks it is DCIS - Ductal Carcinoma In Situ.  Basically it is commonly found with Padgets and is unorganized cancer cells.  They are not aggressive or quick to spread so the treatment is full mastectomy.  No radiation or chemo needed after!  Can you see the roller coaster going up?
Time to go down again.  We have to be sure because this could still be an aggressive cancer so back to biopsy!  This time in the MRI machine.  Oh and did I mention the wrinkle?  There is a small area of enhancement in the right breast too so they will biopsy both.  I am a pin cushion. If I knew how to add emoticons here there would be a sad face here.  Oh and they can't scheduled it till the 17th cause they only do them 1 day a week and that is the first opening.  So now we wait again to know what this is and what to do.  Meanwhile I wonder what it will feel like to lose both breasts and be a pear.

I am grateful for such good friends.  I am constantly reminded I am not alone.  I am grateful for the gospel that shows me where the roller coaster is going so I am not so afraid of the corners and hills.   I am trying to teach my kids that you can do anything if you hold onto that. 
The big picture is good.  I caught this early and we just need to get all the info and make the right decision about surgery.  Possibly be done after that.  I just need to hold on till we get around the next corner and hill.

Spinning like a top!

So I went for a diagnostic mammogram.  After being so squished that I could not believe it, but could certainly feel it, the doctor told me that there was no tumor!  Padget's is usually accompanied by a tumor so this is wonderful news.  I posted this on facebook and decided no blog was needed, this was going to be easy to beat!  But is was not to be. 
A few days later I got a call from Huntsman.  Even with a clear mammogram they wanted an ultrasound to be sure.  SO I tripped off to the Huntman South Jordan location to get it done.  Sadly I was out with Josh at the time.  We walked into that center and he just lost it.  It brought back so many memories from when he was sick that he couldn't eat and was totally on edge.  He did not get any better when the ultrasound found a tumor.  That meant an hour on the phone screaming at insurance and a biopsy that I was not prepared for.  Several hours later we were on the way home and I realized that the first casualty of this was not my body or me at all but my children. 
I wept to know that they are going through this with me.  They have done cancer and don't need to do it again.  Rachel is anxious and Miriam follows me around like I might disappear.  She told me she had a dream where I was bald and then I died.  I sat her down and told her she needs to pray.  I told her that she needs to pray for peace and I told her that Heavenly Father cares about her.  He cares for us all and takes care of us all.  I told her to remember the blessing I had and to believe.
I don't mind having this beast.  One in four woman get this and I am not special so it is just the way it is but I do mind hurting these little ones.  I could not be blessed with better children and I am so sorry to put them back in this dark place.  I pray for them, and Gordon.  I will be fine.
As for the tumor?  Who knows we wait for pathology and answers.

In the Beginning

In the beginning there was a sore and the sore grew....
Around the beginning of December I found a small sore on my breast.  I tried an antibiotic cream but it didn't heal.  One morning I looked at it and thought, "I have Padget's".  I went to my primary doctor but he wasn't there so I saw his partner.  He said , no, but after looking at it "maybe".  So off I went to a dermatologist.  She said no way and treated me for infection.  Several weeks later it was not better so she treated me for yeast.  2 and 1/2 weeks later she finally gave in a did a biopsy.  2 days later she called and said I have Padget's of the nipple.  It is a rare breast cancer.  Only 1 percent of all women with breast cancer will get Padget's.  The good news is it is not aggressive so normally breast conserving surgery and radiation are treatment.  Sounds simple right? 
Nothing is ever simple for me!
I know that Heavenly Father is mindful, giving me inspiration so I could find this early is a gift.  Letting me know tells me he is watching gives me peace, and the priesthood blessing I received from our wonderful bishop reminds me he is in charge and will not leave my family without me now.