Its never good when your child realizes they are going to die

When Jacob got diagnosed, we had a few doctors look at us and tell us they were sorry.  Sorry for this horrible diagnosis.  Sorry for the life that Jacob is going to have.  Sorry for everything we will be going through.  We had no idea what was going to lie ahead.  We had no idea of the pain and heartache it would cause.  We knew there was no treatments.  We knew there was no cure.  We knew that the only cure is when he passes on to be with his Father in Heaven.

One thing we never did was tell Jake that he would die from this disease.  (ugh...just saying that makes the water works come out)  

Then we get this booklet from the insurance company  Saying a doctor has requested this to come to us.  Its called "my wishes" and its a book to fill out on his wishes when he gets really sick, what he wants and doesnt want.  When I got the book, it ruined my whole day.  It made me so upset and I couldnt stop crying.  Just the simple thought of him passing is enough to make me cry.  Well yesterday, I just had a feeling to go through this book with him.  I read him the first line, and it says..."There are many things in life that are out of our hands.  My wishes gives you a way to control something very important-how you are treated if you get very sick." and he said...mommy, dont say it!  I am going to cry if you say it.  And I said, dont worry Jake...im going to cry if I say it...so I wont.  

It was like a punch in my gut just knowing...yep, he knows that his time is coming soon.  But how?!?  We never talk about it.  We never talk to him about it or to other people with him in the room.   But after thinking about it, I was thinking...of course he does.  He is always so sick, every month hes in the hospital, he is in daily pain...how can you think you will get better if you never do.  He has gotten worse.  In a months time, things have gotten worse.  From last year, he has gotten A LOT worse.  How can you know you are getting better when you never do?  

I dont know when his time will come.  All we can do is love him and celebrate EVERY day.  Because we have seen him go from fine to very sick in just a couple hours.  So we dont know what the day is going to bring.  We dont know what big milestones he is going to get to see.  We dont know how many more memories we get to make with him.  We try to make memories every day because we dont know if that is going to be our last with him.  

His bday is coming up.  He will be 13!!!  After last year, I didnt think he would see this birthday.  And we are SO HAPPY that he is still here.  Last years birthday was AH-MAZING!!  It was definitely some memories that we will never forget.  But this bday is a big one too.  We want to do something even bigger!!  I am hoping to check off some of his bucket list items.  I got serious with him and told him that he may not get to do everything he wants in his life.  So if he could do anything in the world before he cant anymore, what would it be?  This is what he said...

Meet a youtuber

Meet lindsey stirling again

go to disney world
Go to the dbacks game and meet some players (we go to dbacks games a lot...this is how we make a lot of memories.  This is one of Jakes favorite thing to do.  He has met 1 player last year for his bday and he got traded the next day)

But he said he would think about more haha.  So I may update this.  

So if anyone knows of any way to help us, let me know!!  Or if you know of something thats cool that he would love...I would love to hear it.

I just want Jake to feel normal...at least for a little bit.  I want him to forget that he is sick.  Forget that he is in and out of the hospital.  I want him to forget that he has a terminal disease and that he lives in daily pain.  I want him to experience life that he should be living!!

We FINALLY have answers

Yes, like the title says...we FINALLY have answers.  The answers we want?  No...but its something!!  Earlier this week we finally found the genetic link to Jacobs mito.

I cant believe I am saying (or typing) those words.  We FINALLY have his puzzle figured out!!  Yes, he has had a mito diagnosis for 2 years.  But its been based on the results from his muscle biopsy.  It could of been many other things from those findings.  But since his clinical presentation matched up with mito, that was the only other explanation.  But now we have a GENETIC link to it!  I cant believe it.

I am having a really hard time with it.  I have no idea why.  I guess I always had hope that maybe it wasnt mito.  And that maybe it was something else that was treatable.  Or maybe I made things out to be worse than they really are and he would get better and we wouldnt be dealing with this anymore.  But those dreams and that hope was shattered.  It was thrown away in one day.  Those dreams and hopes I had went into the garbage can.  Now I have been focused on the what ifs.  Researching his mutation has been tiring.  Its been sad and depressing.  I dont want any of these things to happen to Jacob.  I dont want ANYTHING else to happen to Jacob.  I am done.  I am waving my white flag.  I dont want to do this anymore.  I want my boy back.  My happy boy who loves food, who loves to sit at the computer for hours and play video games, the boy who loved playing with legos, and loved playing tag outside with his brother.  One thing this disease will never take away from Jacob is his happiness.  No matter what is going on he is so happy and loves to smile.  When people are around Jacob acts like he isnt sick at all.  But its once those doors are closed and we are no longer around other people, he gets sick again.  He crashes and lets it all go.  He does not like letting people see him be sick.  He feels like he has to be "normal" for other people.

I am constantly worried about Jacob.  Any time his temp starts to rise, I worry.  Or if he starts to get a stuffy nose, I worry.  I cant relax because when I do, I feel like something is going to happen.  I have nightmares every night of things that will go wrong.  Or jacob getting really sick again and us being back in the ICU.  Knowing that the mito is here to stay isnt helping at all.  It has really made things worse.

Right now Jacob is doing ok.  He is really struggling with keeping his blood pressure stable.  His blood pressure has been REALLY low.  Like when we are in the hospital and his BP goes down this low, they are transfering him to the ICU and giving him BP meds to get it up.  He hasnt been feeling good all day.  He has had a headache for 2 days and has will get little bouts of energy but quickly gets tired and lays back down.  His refulx is so bad right now.  When we give him his meds, they come right back up.  He will reflux on nothing all the time.  We need to up his meds.  He is on 2 different meds to help reflux.  Doesnt seem like its doing its job.  We are out of the hospital so I guess thats good.  His temps have been fine since we have been home from the hospital, the past week.  But today they started spiking back to 99's.  We dont know why and if something is brewing again.  It seems like once his temp goes to 99 that usually means something is about to pop up.  We are praying so hard that he stays out of the hospital during thanksgiving.

I just want to thank everyone again for their love and support.  It means a lot to us even if we dont show it.

 

Friends

Tonight was a rough one for Jacob.  He was supposed to be sleeping and I hear him crying.  So I go to his room to see what is wrong.  Naturally I thought he was in pain somewhere.  But then he says hes fine and he doesnt want to tell me whats wrong.  Finally I coax him into telling me whats wrong.  He tells me that is he sad because he doesnt have a friend.  I tell him that he has tons of friends!!  He says no, he wants a best friend.  I tell him that he has his brother who is his best friend and I kinda leave it at that.  I leave and he calls me right back in.  So I go in and he says, you want to know why I was really crying?  He said he wishes he had a best friend.  A kid who has no medical problems.  So that he could cheer him on when he is in the hospital and someone to cheer him up when he is sick.  This just about broke my heart.  I feel so bad for him.  I wish he had friends.  I really do.  I just wish I could do more for him.  I cant make a kid be his friend. We have tried to have boys come over and play minecraft.  But its not fun when they can only stay for a short time before Jacob is tired and needs to sleep.  Or his TPN needs to be changed, or he needs his meds, or something that scares the kid off and he never wants to come back and play.

It got me thinking about my own life.  I told him, I dont have friends either.  I know what its like to not have any friends.  Sure, I have lots of people I call a friend.  But I dont have many who I can call at a minutes notice and go hang out.  Or someone who knows when im having a bad day and we get to go out and forget about things for a while.  I used to...but not anymore.  I miss having my best friend here.  I get lonely and wish I had friends to hang out with during the day.  But kinda like Jacob, once they get to know my life...they leave.  Its not a desirable life.  I am stressed out beyond stressed, I rarely get time for myself, I have to put Jacob first.  And in many times I have had to cancel last minute because of something with Jacob.

Moving into a new subdivision has been hard.  Lots of awesome people I would love to be friends with.  But the reality is that no one really wants to be my friend.  I dont have little kids like everyone does.  I dont go to playgroups or park days.  I dont sit outside while my kids run around and play with the other kids on the street.  The kids are all much younger than Tyler and Tyler has no desire to really play with kids who are a lot younger than him.  I take Jake out for walks in his wheel chair.  I see everyone starring.  It doesnt bother me.   It doesnt bother Jacob either.  Thats our normal.  I am sure its weird to some people.  They see us and im sure they think that we would be much better off not being bothered.  That we have enough to handle and we dont need people bothering us.  But its the exact opposite.  We would LOVE to meet more people and have them as friends.  We NEED time away!  We need to destress sometimes.

I guess the moral of this post is that we have each other and thats really all that matters. Jacob and Tyler are each others best friends.  I know to Jacob, thats not enough.  He watches all these shows on Disney and nickelodeon and they all have best friends.  I hope that Jacob realizes he has a ton of people who are always cheering him on when he is in the hospital.  I told him next time, I will show him all the posts from people.  He has the biggest cheering section.  He has tons of people who love him.  He will understand that one day, I hope.

Some thoughts

My heart has been very heavy the past few months.  Just seeing Jacob suffer in the hospital is just horrible.  I sit there and cry a lot because I just feel helpless.  When he was so sick and had to be put on a bunch of meds to help him come back to us, I got in my car and I just cried and cried.  I have done a pretty good job of holding things together until I get alone and start to think and then the walls just break.  I cant be strong anymore.  I cant be the rock.  I am so beyond scared that the worst is coming.  We have had doctors tell us that.  That it seems like this is all the calm before the storm.  We are very good friends with the ICU floor.  Every nurse and doctor know us.  Thats not something I want to be friends with.  I mean they are all great people...but that just means Jacob has been there too much!!

This last hospital stay I realized that these people really do think of us as family.  We were having nurses come from other floors to say hi and to check on Jacob.  We have people from the respiratory team fighting over Jacob and who gets to see him.  We have a girl from the line team who left to another job and she came to say good bye to Jacob.  It was really sad and he ended up crying a little...which if you know Jacob, you know that he does NOT cry over things like that.  We have doctors who work harder for us because they know Jacob and they know that he needs a little bit more attention.  We have doctors that dont even have to look at past notes because they know Jacobs history by heart.  We have nurses who bring Jacob his favorite things before we even get to the room because they know he loves seeing his gifts on his bed.

This is not a life that I wanted to live.  I thought for sure that my 2 boys would move out and get married and give me lots of grandkids.  And that Jacob would play basketball because he was so tall.  But instead we get to worry about Jacob being sick all the time, and going to the hospital every few weeks, and what we are going to do with Tyler because he is left without a mom for a while, we deal with behavior problems with Tyler because he is tired of Jacob getting all of the attention.  I wish that Tyler would understand that Jacobs attention is not fun!  But of course he doesnt.  He is only 9 and doesnt really understand a whole lot.

We know that Jacobs time is coming soon.  When...well we dont know that part.  But I just want Jacob to live a good life.  I want him to experience things he should be able to experience.  I want him to rest easy knowing that he had a good life.  I am trying so hard to give him that life.  To take mito away for just a little bit.  To make sure that he gets experiences.  To make sure that he knows that he is loved and that there are people all over who love him and pray for him daily.  I try hard to make his life as normal as possible.  I want him to get in trouble.  I want him to do things he isnt supposed to do.  He is supposed to be a tween!  He is 12 years old and I want him to be able to enjoy things a normal 12 year old gets to enjoy.

Sorry this post is all over the place.  I am struggling with emotions right now.  I just wanted to write some of my thoughts down so I dont forget them...haha.

Hospital again?!?!

The title says it all.  We were in the hospital AGAIN!  UGH!!!

Last tuesday night I decided to randomly take Jakes temp.  He wasnt acting very sick but I just thought I would take it.  I am so glad I did because he had a fever!!  Jacob never gets fevers so I knew he was sick.  I waited for a little while to see if it would go down but it never did.  It just got higher.  So I took him to the ER.  Jacob had been sick for a few weeks off and on.  He has had a bunch of viral sicknesses.  So the ER doc said that his blood work looked great and it didnt show any signs of infection.  So we could go home because it was just a virus. I was happy because we had a very important doc appt to go to the next day.  We have been waiting to see this doc and I did not want to have to cancel the appt.

I went and bought tylenol and motrin to give to Jake hoping that his fever would go away.  When I gave him the meds the fever thankfully went away.  So I went to sleep and woke up a few hours later to take Tom to work.  I went in and took his temp and it was almost 104!!  I gave him more meds and prayed that his fever would go away for this doc appt we had later that morning.  Thankfully it did, but Jacob was very sick and you could tell.  He had chills so bad and was in and out of sleeping.  He would just sit there and whine because he did not feel good.  We  went to the appt and everything went good...until Jacob threw up!!  It was so sad.  I felt so bad for taking him out when he is obviously sick.  The doc knew he was sick and wanted us to take him to PCH rather than cardons.  He wanted us to see a doc at PCH and knew that we would get to see him sooner if we ended up inpatient there.  I told him I would think about it and if we had to take him back to the ER, I would take him to the PCH ER.

After the appt we took Jake back home and I went to get gas because if we were going to go to PCH I needed gas and I knew that Jacob wouldnt be too happy sitting in the car while i gassed up.  I got home and Karla (his nurse) said that his temp was back up to 102 and that we should probably take him back to the ER.  Right as we were about to leave I got a call from Cardons ER. They said that the cultures they took of Jakes line last night came back POSITIVE for infection!  And that we needed to get back there ASAP so they could admit us and start him on antibiotics.  I hung up with her and the door bell rang.  It was the district nurse here for our yearly appt!  I was so stressed out haha.  She came and I told her what was going on and to ask Karla all the questions because I was trying to get things ready.  Her appt lasted about 10 min and I was ready to take Jake to the hospital.

We get there and get taken right back because they had been expecting us.  So they take all kinds of blood work and cultures of his line again and we wait a few hours and finally they put us up on our floor.  When we got there Jacob was getting really sick.  His temp went up to 105!  It was really scary.  I have never seen a temp that high before.  His body started to shut down.  His blood pressure was starting to go low again.  They made the decision to send us back to the PICU.  So back down to the icu we went.  We were only on the floor for 2 hours haha.  Once we were there the doc was able to start him on a rescue med for his blood pressure to bring it up.  Except it wasnt coming up!  So he had to stay on this med for a whole day.  Finally it started coming up and stayed up the rest of the time.  He was on 2 different antibiotics to fight off whatever was giving him problems.  They finally found what the bacteria was that was causing the infection and got us on the right antibiotic.  And that did the trick.  We were able to save the line and we only stayed in the hospital for 8 days!  Compared to the last 2 stays, this was a breeze haha.

Jacobs birthday was AMAZING!!  He first woke up in a very good mood, which is rare.  But he knew it was his birthday so I was happy to see him happy.  We surprised him saying that daddy AND Tyler were both taking the day off for this special day.  So he was happy about that too.  We let him rest and watch tv/youtube for a while until we had to get ready for the fun.

Around 1130 some of his cousins came over to say happy birthday.  We invited them over, knowing what was going to happen.  But Jacob still had no idea.  He thought they just came to spend some time with him.  A little after noon there was a knock at the door.  Tom got the door and Tyler ran to the door and started yelling and laughing.  Jacob looked at the door and saw Red Bird from the cardinals there!!  He was so excited.  He brought along some friends.  Lots of people from the Cardinals organization and CHEERLEADERS!!  Jacob was so embarrassed haha.  It was really cute.  They stayed for a little over an hour.  They brought cupcakes from sprinkles and lots of awesome gifts.  They even brought gifts for tyler and their cousins.  Jacob got all kinds of cardinals gear.  A jersey, hat, shirt, water bottle, footballs, a bracelet, ear phones, gloves, and more!!  It was so nice of them to do this for our boy.

After they left we went out and did a few fun things and then it was time for more!!  At around 5 some more friends and cousins started showing up for a little birthday party.  We had a balloon artist and then SPIDERMAN!!  Spiderman was AWESOME.  He played with these kids until they all wore out haha.  He was playing hide n go seek, tag, and other fun games with them.  All the kids thought he was the best!!

Jacob had a pretty good birthday, I would say.  The best part was seeing him open up all the cards.  He was so happy.  We are still opening some of them.  We didnt get them all open.  So we are taking our time with it.  It has been such a great experience.  I am overwhelmed by the support we have gotten.  So many people praying for our boy and wishing him well wishes.

Jacob's birthday

After our big scare at the hospital, we thought we wanted to do something really great for Jacob for his birthday.  He was feeling really down and knew that his birthday would be so horrible this year.  So I wanted to make him have the BEST birthday, yet!  So I decided that I would set up a PO box and see if I could get a few people to send him some cards.  I got the smallest PO box they have and thought I would just pick it up the day before his bday.  I posted it on his facebook page and it blew up from there!!  People were sharing his facebook page left and right.  I was so shocked!  I didnt think it would take off like it did.

A friend of Toms gave us dbacks tickets from his work.  They donated them to us and it was amazing.  And then Tom works with a guy who knows 2 of the dback players.  So he talked to one of them and told him we were coming to the game.  And what they did was amazing.  They got a jersey for Jacob that had the name Priestley on the back!  And he also gave him a signed ball.  And then took him and Tyler to the clubhouse where they got to meet a few players.  And the best day of Tylers life came, when he got to meet his idol, Aaron Hill!!  So the game starts and we are all flying high!  It has been a great game and then someone comes and sits behind us and says to tom "are you tom?"  He says yeah, and the guy says "Is this your son?" And Tom says "yep, thats Jake!" And then the guy talks to Jake a little bit about his jersey and then says "here I got this hat for you to match your jersey" and gives Jake a hat!!  It was so awesome.  Then the next inning they put us on the jumbotron and says we would like to welcome Jacob Priestley and family to the game!  It was awesome.  We had such a great time and Jacob was so happy and smiling the whole game.

The next day Tom sends a message to all of the news channels about a letter he wrote to the dbacks saying thank you.  Someone from Channel 10 emailed him back and said they wanted to do a follow up story on him and Jake.  So they came over later that day and did a news story on him.  It aired the next morning and it was great.  Here is the link to that.  http://www.fox10phoenix.com/story/26372078/2014/08/26/d-backs-create-special-day-for-boy-battling-life-threatening-disease

There is still tons more to come when his birthday actually gets here tomorrow.  I cant wait!!  It has been such a great week so far and I love seeing him so happy.