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.