Wake UP!

I don't know what to think...what is normal and what is too much sleep for a kid who has been through all this and still recovering from a bone marrow transplant.  It's 2:30 in the afternoon, and Jacob is still OUT cold!
I want to go wake him up, but then what...he's bored out of his mind these days with nothing to do. It's a beautiful day outside, but he can't do all the same things he used to do on beautiful days like this and he has no motivation at all to get out of bed these days.

What the heck...it can't be good for him to sleep this much, can it?  Or, maybe it's what he needs...how the heck do I know? ...never had cancer before & never survived a bone marrow transplant before so I can't say that I know what's normal for him.

I'm just frustrated.

I want him to wake up and do schoolwork, get ahead, study his seminary lesson, clean up his room and it's way past the time he needs to take his pills now.

Hmmm...maybe I wouldn't want to wake up either if I was him.

But, I have to wake him up to take those stinkin' pills.  Have to... so I'm going... now.

Getting read for the first ride on his "Make a Wish" Dirt Bike!

Yes, this is what you're thinking...and yes, I'm freaking out! Josh loaded him up with his bike today and they are taking it out for the very first ride!  Jacob got a fancy filter mask to wear inside his helmet and we took it to his appointment yesterday at the hospital.  The doctor was very hesitant about it and said to be extremely careful...but he okayed it!  I think he's more concerned about Jacob falling and getting hurt than breathing in the dust at this point...at least that was the feeling I got.  With the new filtering mask and his "body armor" and the helmet with the face mask & filters built in, he's pretty well protected from dirt and dust as long as he's not riding right behind someone.  Josh will let him lead the way so he's out in front and they plan to go for a nice easy cruise.  (at least that's the story I got...)

If you're reading this today, please say a little prayer for my big boys that they make it home safely! (and that they have lots and lots of fun!!!)   I really am excited for them and man I wish I was there to get pictures and video of jacob riding for the first time, but well, I just hope they are having fun and making some awesome memories!

Very happy boys.  

...and that's the bike! All loaded up in the back of Josh's truck.  It is so fancy with all the Make a Wish decals and Nitro Circus theme.  

He looks tired already and they haven't even left.  Just loading up with everything wore him out.  haha

I

Swim

Ahhh...I just had to share this amazing little song called "Swim".   I know the bells are a little cheesy but I just love it and it makes me think of Jacob and all he's been through!

This is really silly, but there were so many days when we were in the hospital together that I just had to thank Dori from "Finding Nemo" for her words of advice..., "Just keep swimming!"  I love it, so simple and yet so deep.   Nowadays, I just have to add that I really relate to Dori because I can't remember from one minute to the next sometimes! My brain just doesn't work like it used to. I'm so stinkin' forgetful and absent minded and sometimes I know my kids (and my husband) think I'm crazy.  Jacob laughs at me so much (I'm so glad he laughs...never gets frustrated or mad at me...ever) But he laughs just watching me walk around his room sometimes trying to remember what I came down to do or what we need to do next.  Did I remember to put on the little toe sticky to monitor his oxygen while he sleeps?  Did I remember to turn on the oxygen machine? Did you take your pills, did you get the IV medicine hooked up for the night, got enough water? ...how much did you drink today anyway???...not enough, drink some more! What else Jacob...don't let me forget.  Hahaha...ya it's funny sometimes.

But that's not what this song is about.  It's about Jacob and swimming for his life, keeping his head above water.  And, I love that it's about swimming because boy does he ever love to swim!  He was a little fish from the first time we put him in the water...at 2 weeks old! He loved it.  Nowadays, well, he misses it more than anything in his life that he had to give up for cancer.  It's been long over a year now since he's been able to swim and it's just driving him crazy.  He wants more than anything in the world...even riding that dirtbike, to be able to swim again.  I'll never ever forget the day he found out how long...really how long he would have to wait for them to take his "line" out of his heart and be able to get into water again.  The nurse asked, what kind of cancer is it again?  And you're headed for the bone marrow transplant? Ya, well then I would guess at least a year.  "A Year?" he asked. I'll never forget the look in his eyes as he told him he couldn't swim until it was out.  How he fought back the tears as the reality set in.  I'll never forget it, and it broke my heart. 

The cool thing that I realized is that I really think that swimming will be the one thing he'll be able to do best when this is all over and he's better.  Running may be hard for a while on his tender knees and joints, football will be tough getting back to, riding the dirtbike...well, that just scares me.  But swimming...it will be so good for him, I can't wait!  Just can't wait to see him jump off a dock somewhere or swing off a long ropeswing, dive off the high dive and just ...swim.

Can't wait for summer - and for that crazy tube to his heart with two little lines and their ugly caps to be taken out of his body so he can get more than his feet wet in life again!

Back home...and better

It's about time I give an update to the last post.  Sorry to leave everyone hanging...I just read it and realized I never even wrote to everyone that we got to go home!  They only kept him just the one night, basically for observation and to run all those tests.  First off, I have to thank everyone who said a little prayer for Jacob and his heart!  I was so worried about that echocardiogram.  But guess what!--his heart is doing fine! The test was completely normal and he has no problem there! I'm so relieved and so completely grateful for that one little (well, kinda big actually!) gift of good news.  It's actually amazing to me considering that during his 7 months of treatment, he had high dose toxic chemotherapy drugs pumping directly to his heart through his central line.  His heart acted as the pump to distribute the chemo and so many other harsh medicines throughout his body.  Medicines and chemo that burned, scarred and damaged his lungs, but somehow left his heart alone! It baffles me, except for the fact that I prayed for his heart almost every day while he was in treatment...and I still do.  And, I know that countless other people have lifted him up in prayer every day since he was diagnosed...and still do.  ...thank you!

We were sent home on Wednesday after all his tests were completed and results showed no new surprises. They never really gave us an explanation for why he was having so much trouble with his oxygen levels, but decided to just give us access to more oxygen to help him through.  Somehow I wonder if they just sort of expected this to be the case when he tapered down low on the steroids.  They are concerned, but apparently there isn't much more they can do about it.

We came home and got the call from the Home Health department to deliver our prescriptions and new oxygen supplies.  They came and swapped out his old condenser that could deliver up to 2 liters for a new one that goes up to 4 liters.  We got a new supply of longer tubing so he can get all around the house and stay on it during the day without having to switch to a tank. (but this leaves him attached to a cord all the time...ugh!)  The coolest thing they gave us is a new "regulator" that goes on his tanks and some super small tanks that fit in a backpack or better yet, his "camel back" backpack! This has made all the difference in the world!  It's pretty incredible what a constant & sufficient supply of oxygen can do for a kid. ...and, Amazingly enough, he doesn't seem to mind at all having to pack it around with him everywhere, all the time.  (that would drive me nuts!)  I think he's just so glad to feel better that what the heck, he'll take it! He just packs up that little camel back and he wants to go hang out with friends, practice Lacrosse with Joshua in the backyard, go to the skatepark or take a walk.  The change in his energy level has been amazing. It's hard for me to see him having to wear that little nose tubing across his face and around his ears all the time, but it helps so much that I'm just grateful.

We don't know how long it will be like this for him, but we are hoping and praying that this is just a bump in his road to recovery.  We're hoping that his lungs just need some time to "adjust" to the lower doses of steroids until his body learns to start making it's own hormones or whatever it is he needs to keep the inflammation down.  We have been told that his lungs have irreparable damage and scarring that will always be there for him, but they wouldn't know how inhibiting this would be until he is completely off the steroid support.  I'm just hoping and praying that this is not it and that he will get better as he becomes more and more active and as he grows.  His lungs still have some growing to do, so we hope that the new healthy lung tissue that grows for him as he gets older will compensate for the loss.   In the meantime, we'll support him with all the extra oxygen he needs and be thankful for the world of modern medicine we live in that can supply him with it!

Back at the Hospital

We spent the night in ICS at the hospital last night after 5 months of being at home. We have felt so blessed to not have to come back for such a long time and coming back here just brings a flood of emotions. Just as I was starting to really see the light and beginning to feel somewhat like a normal family again. Now, the memories come back to me and I’m reliving so many of those feelings we had for the 7 months we lived here. It was so strange waking up in this room again that feels so oddly familiar. I can only imagine how it feels for Jacob. He was so upset yesterday when I broke the news to him that they wanted him to come back in to be admitted to the hospital…

We’ve been watching him closely for the past few weeks as we have been tapering his steroid dose down ever so slowly.  The docs told us that around the 10mg stage, he would either stabilize or if we were going to have any trouble, that’s when we would see it.  Well, we’ve been getting some trouble now that he’s been at 10mg for over a week. Over the last few days, his oxygen levels have been trending down lower and lower causing him to need more oxygen.  On Sunday, I noticed he just didn’t look so good and I can usually tell by the color of his face, cheeks and mouth if his oxygen is low.  I checked him and his saturations were in the low 80’s.  Being that he was awake and up & walking, this was very unusual.  We got some longer tubing on his oxygen machine and hooked him up so he could still get around the whole house and called the doctor.  Being low on oxygen during the day is not normal for him.  She said to just watch him for a few days and call back if he gets any worse.  Well, he got worse and on Monday night when I went to check on him while he was sleeping, his saturation was right at 90 while he was sleeping, but he was already using 2 liters of oxygen and should have been higher.  Within a few minutes it dropped below 90 and the alarm started.  It woke up Joshua so he came upstairs to tell me and when I went back down, it was going between 84 – 86 and still on 2 liters of oxygen.  So, I checked all the lines to be sure the thing was working and then watched him some more.  He never got close to 90 again.  Well his oxygen machine was already maxed out….it only goes up to 2 liters, but he needed more.  I took him off the machine and connected a tank for him.  The tanks can go up to 5 liters, but they run out quickly at a rate like that.  I tried 3 liters, but that still wasn’t enough to bring his sats up, so we went to 4 and that worked.  4 liters of oxygen! That’s crazy, he’s never needed that much even when he was in treatment and had pneumonia.  I decided to sleep on his couch and watch him.  The whole thing started at 4am. By the time I got his oxygen stable, it was now 6 and I had to set an alarm for 8:30 to be sure I would remember to check the tank.  They only last 2 ½ hours running at a rate that high.  

I waited until after 8 and called the doctor.  By the time they called me back around 11, he was on his 3^rd tank of oxygen and the doc just said, “we need to admit him, how soon can you get him here?”  So, I started packing.  Who knows how long they’ll keep him. Maybe just watch him for the night…but I don’t know what’s going on in his lungs so no telling how long we’d be there.  I didn’t bother telling Jacob until he was awake and I was ready to go…he didn’t sleep so well either all night.

So we checked in to room 4415.  Boy, I really think these rooms are getting smaller! How in the world did we do this for 7 months? Once we were settled in, the docs came for a visit and let us know their plan.  They set him up for a chest x-ray and an MRI, but before that, they stuck a hose down his nose to suction out some mucous and have it tested. Just to be sure he didn’t have any kind of virus that could be causing the problems. …yuck! Jacob did not like that.  The chest x-ray of course was to take a look at his lungs.  The MRI…is for his legs.  He’s been having a lot of pain in his knees and ankles, so they decided to take a look and see if the steroids have damaged anything.  We knew that steroids could cause problems with his bones, but it was just another one of those “wait and see” situations.  After he was done with all the tests which took the whole afternoon, we settled back into the room for the night, put on a movie and well, we had a little slumber party!  I’ve never seen Jacob be so much fun when he’s been here. He used to always just sink down into his covers, tell me to close the shades, turn off the lights and he'd try to go to sleep.  He still does that when the docs come in.  He’s amazingly good at putting himself to sleep whenever they come in and want to talk about things...haha.  Even I can’t tell if he’s faking it most of the time.  This time has been different.  He’s been cracking jokes, thinking of pranks he wants to play should his favorite nurses come to visit and just goofing off! He’s even been sweet to his nurses and his tech saying “please” and “thank you”.  His tech last night actually called him a teddy bear! It’s really nice actually that they can get a glimpse of the real Jacob.  He was such a grouch through all his months of treatment and so depressed and it made me sad that they maybe didn’t think he was a very nice kid.  I can’t wait for him to be really all better and start looking like the handsome young man that he is and able to be himself again.  We stayed up late laughing at crazy jokes he wanted to play on everyone, watching movies and old episodes of “Lost”.  We had a few tickle fights cuz I tickled his feet just to get a laugh out of him while I was rubbing his ankles and knees.  He promised to get me back bad sometime when I least expect it…like when I’m sleeping.

So here we are, it’s morning and as usual, Jacob is still sound asleep at almost 11am.  He slept right through the doctor’s visit this morning when they came to tell us the results from all of yesterday’s tests and give us the plan for today.

The x-ray actually looks better than the last ones they have done and they think there is some improvement there. So what’s going on then? The nose culture tests have been negative so far, but they are doing some more tests and those will take a few days to get back.  I don’t think there’s anything there though since he hasn’t had any symptoms at all like a runny nose, cough or fever.

The MRI, on the other hand, had some bad news.  The steroids are taking their toll and that explains the pain in his knees.  It always amazes me how well these doctors know how to break bad news.  He’s got yet another crappy diagnosis, another new “condition”, trading one disease called cancer for a set of new diseases and conditions that may not kill him, but they'll be obstacles for the rest of his life.  They called it Osteo-necrosis.  Basically, it means the steroids have weakened his bones and cut off some of the circulation causing an area at the base of his femur to die.  Yes, I did say “die”! Can you believe that?! She ever so sweetly said, “There’s an area that we can see from the imaging that the bone is actually “dead”. So, we’ll get him an appointment with an orthopedic specialist.” What the heck does that mean?  Does it mean he will always have pain in his knees? Will he be able to run again? Play sports? What about growing? He still has a lot of growing to do…how can his bones grow if they are “dead”!?  My mind is just reeling now with all the questions. 

Cancer SUCKS!  …sorry, I know that’s not a nice word, but I can think of a lot of other words that I just won’t say.

The plan for today is to have some more tests done.  First, a Pulmonary Function Test (PFT) that tests how well his lungs are working, their capacity and how well and how fast they are able to get oxygen from his lungs into his bloodstream. Next he’ll get an Echocardiogram.  This is a test that is done with ultrasound equipment on his heart.  They basically measure how well his heart is functioning.  His blood pressure has been running pretty high lately so I’m curious for the results of that test.  Although we had the bad news of his lung damage, I’ve been happy to know that his heart didn’t get any damage through treatment.  And, though I want to know the results, I just get so much anxiety worrying about what they are going to tell me next. With the good results on the x-ray and his last CT scan which also looked better…I guess I’m a little scared they are going to say his heart is struggling too.  They have warned us that being low on oxygen, causes more stress on the heart and this morning, they explained how the heart and lungs work together to get oxygen to the body.  Please, please pray that his heart is still doing well! I just don’t think I could handle another “condition” newsbreak if that’s what is causing his oxygen levels to be so low.

Can I say this one more time…?  Cancer STINKS! (was that better?) This is such a nightmare.  I just want to wake up and somebody tell me it was all some crazy stupid year-long dream!  I actually did have a dream a couple weeks ago where Jacob walked into my kitchen and he was completely better.  I looked at him and thought, how far he has come…you wouldn’t even know from looking at him all that he’d been through.  His hair was blonde and straight…and long again.  He was built like the strong young man that he was before all this and he just looked like my Jacob again.    I want him back.  I miss him.  I just want my boy back!

If all his tests look good today, we’ll be going home tonight.  We can watch him at home and keep the docs posted if anything changes…They’ll order us a new condenser that can make more than the 2 liters his machine does now and get him a portable tank that he can carry around with him everywhere more easily than the tank he slings on his shoulder now (and never uses cuz it’s a pain to haul around).  They’ll refill his meds and let him start taking Aleve or Ibuprofen for the inflammation and pain in his knees and get him an appointment with an orthopedic specialist.   …yay  (that was yay for going home, not all the rest…bleh)

Easter...and an anniversary!

It's been just over a year now since Jacob was diagnosed with cancer.  So much has happened, so much in our lives has changed and there's so much of the story that has not yet been written.  ...and there's so much to be thankful for.  I hope to be able to fill in the spaces from the weeks and months when I didn't have time to write so the story of his journey will be complete.  But that will have to happen gradually and it will come in chunks of time when I can go back and relive those memories so they can be recorded for him.  There's so much that he doesn't even remember. I had thought that at 13 and 14 years old, he would remember everything, but there are times that he has no memory of whatsoever so I am determined to write about everything he went through.

The infamous day of April 8th has come and gone with it's anniversary of the worst day of our lives.  As the days approached closer to the 8th, I wasn't sure how I was going to feel that day.  I had been dreading it all year.  How would I feel on the anniversary of his cancer diagnosis? Would all those emotions come rushing back to me? Would I crumble and relive that day all over again?  Or, would I be able to celebrate with him as I wanted to and just be so overcome with gratitude that here it is a year later and he's still with us, a survivor!  This year, April 8th was Easter Sunday.  On Friday, the sixth is when I really felt the memories of his diagnosis because it was a Friday last year when we went to the hospital with all those unexplainable symptoms and after a full day of testing and discussions with doctors that we were told he had Leukemia and our world came crashing down around us.  On this friday, one year later, I realized this was the Friday before Easter...Good friday.  And then, the reality of the significance and the reminder of everything embraced me.   I never felt more love for my Savior than I have this year.  For going to the cross and giving His life for us only to show us that He still lives and we can also live forever.  It is this knowledge that carried me through the last year.  Knowing that He had Jacob's life in His loving hands and that he was right beside him every day while Jacob endured the toughest trial of his life.  There were times that I felt him so close, I thought I could almost touch Him.  I know that's not possible, but sometimes...it felt that way. His presence was so incredibly real and He comforted me, He blessed Jacob and He strengthened him.  Our Savior not only loves us, but he has felt every pain and endured even greater suffering than we are capable of enduring in our lives.  He knows.  He understands.  And, He was there with Jacob and carried him through this, lifted him and gave him back to us to keep.  I am so overwhelmed with gratitude every day that our Jacob got to stay.

This Easter Sunday was probably the most significant Easter I have ever had, and yet we honored the day in very simple ways.  No Easter bunnies, no egg hunting, no candy...we just went to church together as a family and spent the day together.  Almost normal, except Jacob wasn't able to go to church yet.  He's not allowed in church or school until he has his own immune system back.  So we went to church without him again. But, after church, Noelle and Ryan came over to visit and we had a dinner together.  After dinner we went over to the High School field and hit a few golf balls and played frisbee.  It was wonderful! Just a simple game of frisbee on the grass but it meant so much to me and to all of us.  For brief moments, we could just be silly and laugh and smile ...and forget.   That's how we celebrated his anniversary of cancer diagnosis.  We just had a regular day on a Sunday, we remembered our Savior and all that He did and we celebrated by just living the life that He gave us.  I can't think of a better way to spend that day...cancer free.

When the sun went down and we went home, we loaded the pictures and sat around the computer laughing until our cheeks and stomachs were sore.  I'm sure I haven't laughed so hard all year.  We made up stories for  a bunch of the shots and laughed our hearts out zooming in on everyone's facial expressions.  Check out these pictures from our day and be sure to double click each one to get a close up.

Go long!

Noelle caught that frisbee by ringing it around both hands! 

And then Ryan caught it one handed. 

Looks like Joey gave him a big shove...and Ryan took off flying! 

Somehow I can't help but wonder if Joshua was going for the catch or just doing a cheer for the great catch Caleb made.  ..."gimme a C!"

Uhhh, not sure what to say about this Noelle.  I think we missed your talent, You and Joey belong in the ballet. 

Noelle was taking this fun game a little serious...no playing around here.  

And, we think Jacob was trying to prove that Sasquatch really does exist by making an appearance behind our game.  Ya, and who would have guessed Big Foot could play frisbee? 

 Caleb and Joshua high jump for the catch!  Almost looks like Joshua's got a shot at it!

 Caleb won.

Noelle using her bum to shove Joey out of the way....haha.

 Are you two practicing those ballet moves again?

 Josh is joining in the dance now with some air-boxing moves and Caleb just can't seem to figure out if this is frisbee or dance, make up your minds guys!

 Good catch, Joey.  ...Jacob, your arms aren't quite long enough...gotta take a few steps.

 We laughed so hard at this shot.  We decided that a bomb went off in the lower left side of the frame and Joey & Joshua are being blasted backwards while Noelle & Jericho scream, Nooooooo....my broootherssss!!!!  And Dad just stands by in shock.  ...can you see it?  Zoom in on Joshua's face and you'll see what we're talking about. hahaha

 We were all stunned when Ryan got ahold of a bunch of imaginary balloons and began to drift up into the sky! Noelle is stunned as her husband flies away as Josh and Caleb hurried into position to catch him in case the baloons popped and he'd come falling down.

 I'm open!! Toss it to me guys!  ...over here!

Steroids

Steroid update:  Well, the good thing is that they work.
We tried a week back on just 10mg to see if that would do the trick, but it wasn't enough.  After 6 days at that dose, Jacob still needed his oxygen tank all day long and we were taking it with us everywhere.  He went through 3 tanks in 5 days.  So, I called and asked to get him in to his clinic appt a day early so they could check him out.  That was a long day.
He needed his monthly dose of Pentamadine which takes about 45 minutes start to finish.  He has to breathe it in so they give him albuterol first to open up his lungs and then he has to inhale the Pentamadine mist for about 20 minutes.  Everyone has to leave the room while he does it so we don't breathe it in too.
He also needed a transfusion of IVIG that day which takes several hours.  IVIG is a collection of just antibodies from a whole bunch of blood donors.  Since Jacob doesn't have any antibodies of his own yet and his new marrow can't make them until he's off all his immune suppressive drugs, they explained that he has to "borrow" antibodies from other people.  They help him fight off infection.
While we were waiting for the IVIG to be done, we took a walk down to radiology for an x-ray of his lungs. This was a little scary to me considering that it's flu season and any kids with respiratory problems are probably passing through radiology for chest x-rays.  He wore his mask the whole time and I didn't let him touch anything and we got out of there as quick as we could.
The x-ray showed that his lungs are "slightly" better than they were at the last one.  We were glad to hear that they aren't any worse. 
Dr. decided that the 10mg just isn't enough to make a difference so he increased his dose to 40mg.  
At 40mg, we saw a great improvement and now I'm happy to say 4 weeks later, still at 40mg, Jacob isn't needing oxygen at all through the day and any time he's awake.  We keep him on the oxygen while he's asleep just to be safe.  When I check him while he's sleeping though, he doesn't get too scary low. 
The yucky part about 40 is that he still has all the symptoms of steroid side effects.  He has a hard time sleeping at night and staying asleep, his joints ache and his legs and ankles hurt pretty bad and he's got a bigger appetite again.  His swelling has gone down quite a bit, but he still sure doesn't look like himself yet.  Next week, they will talk about maybe beginning a slower taper down from 40.  Probably 5 mg at time instead of dropping 10mg each week. 

Good times

Jacob had a GREAT day today.  First of all he woke up at 8:00 in the morning (never happens!) and went to REI with me and Josh to check out the big annual yard sale they had today. He didn't even get out of the car though because the crowd was way too big.  But hey, it got him up bright and early this morning.  He did take a good nap in the afternoon.  Then his friend Tom called at about 4 to invite him to the movies.
I just have to say, I am so amazed by Jacob every day.  This week was a rough one with the lung setbacks and having to go back on steroids.  I'm sure that Thursday and Friday's sleep all day days were his way of coping/moping about that.  But it was like today he just decided to get over it and get on with life!  He didn't let a little (kinda big actually) thing like having to lug around a big oxygen tank with him all day get in the way of doing what he wanted to do.  We took that oxygen tank with us this morning.  He packed it up and carried it like a backpack...no complaints.
He was a little bummed about the fact that he used up that tank in the morning and had to take the big one to the movies though.  But hey, that didn't stop him either.  We just wheeled it into the movie theater with him and when the movie was over, the boys stayed and watched another one and then went back to Toms house to hang out for a while.
I think the whole thing was harder on me than it was for him.  Watching him walk into the theater with two of his best friends, hanging out with the guys, dragging an oxygen tank with him...well, that was rough to watch and I'll admit that the tears were obstructing my vision all the way back to my car.
I am so incredibly grateful for the good friends Jacob has.  Those boys didn't even flinch when he walked up with the tank.  They just walked off together like nothing had ever changed.  I know it's hard for them.  They love Jacob and they would probably be together every day...the whole gang of them. But there's so many things that Jacob can't do with them yet, so we don't see the guys as often as he'd like to.
He can't be in big crowds so on Toms birthday last month, he went to the party at his house and had a great time celebrating there and he even rode along with everyone to Airborne where they have wall to wall trampolines to bounce on...it's a blast.  But, when he got there, he hung back from the crowd and waited till I got there to take him home.  There were way too many kids in there and he knew that was just too risky for him with a weakened immune system.  A simple common cold would land him in the hospital for at least 2 weeks and he'd probably be spending that in the ICU with breathing machines because his lungs couldn't handle a cough right now.  It just wasn't worth the risk.
He can't skateboard, snowboard, ride bikes and going to school is out of the question this year.  Pretty much the only thing he can do with his buddies is to go to the movies for an afternoon show, not in the evening when it's crowded and not on Friday or Saturday night shows...even more crowded.  He has to wear his mask if he's in a crowd or when there's little kids around that could have runny noses or anything he could catch.
But, with all those restrictions...I have to say that he is so incredibly blessed to have a group of friends who love him unconditionally and can just take some time away from other things they could be doing to hang out at the movies with Jacob or just hang out in his room for a while playing video games, joking around and just being guys.  They really have no idea how much it helps him and how important it is for him.  Those times with his friends are probably the best medicine of all.

Spoke to soon

Well, I spoke too soon.  He can't stop the steroids after all...we're back to 10mg per day because his lungs "rebounded" as they say.  Apparently, if you taper them too fast or if there's even a tiny bit of inflammation left anywhere when you stop the steroids, the inflammation comes back real bad, real quick.  So, he took that last dose on Sunday.  None on Monday or Tuesday.  By Wednesday, we saw some trouble.  Actually, it was Tuesday night that I started to worry.  As he was trying to get to sleep, I put him on the pulse/oximeter to watch him through the night.  His oxygen was dipping pretty low.  He normally sats around 94 when he's still awake without oxygen on and that is really good.  As he falls asleep and his breathing slows, he would dip to the high 80's like between 88 - 91 while sleeping...which is why he wears oxygen all night.  Well, he was dipping like that while he was still awake and even got down to 87.  He put on his oxygen and went to sleep.
By morning, things got a little worse and he was dipping like that with the oxygen still on and running.  When he woke up he was so tired and had a headache but we had a clinic appointment at 12 so he had to get up and get in the shower.  By the time he got out of the shower (didn't wear oxygen in the shower, never needed to), his lips were blue.  I took one look at him and said, Jacob you look blue, let's check your levels, and I put him back on the oximeter.  He was 67 and dropping fast!  He plopped down on the bed and said he just had to lay down, "I'm so tired mom" he said. I checked his toenails and they were grey, his fingernails were white and no blood return when I pressed on them.   He got down to about 64 and then started to climb again but couldn't even get up to 80 without the oxygen on.  I was freaking out by now.  We turned the tank up as high as it can go and watched his O2 levels climb quick and soon he was back up above 90.
I packed an oxygen tank in the car and packed my bags for the hospital.  I was sure he was going to be admitted yesterday and we'd be spending the night in ICS again.
Well, we got to the clinic safely and did some testing on the way there with him sitting up in the car and breathing deeply.  He was able to keep his levels above 90 on his own if he took deep breaths and let it out slowly like a whistle.  When we got to the clinic, they checked him and he went from 87 - 94 then 93, 92, 91, 90 right before she took the oximeter off his finger.
So we told the Docs about our "episode" that morning and they decided that he would have to go back on the steroids for another month or so and then we'll try to taper from 10 down to 0 more slowly.  Apparently they make .5 and .1 mg prednisone tablets so we'll be doing some of those on the way back down ...and praying that we get every last bit of inflammation fixed before we have another "episode".
Well, the good thing is that 10mg is not that much and it's not dangerously high levels. Hopefully he will still be able to lose some of the swelling and start looking more like himself over time, it's just going to take a little longer now.

Say goodbye to steroids!

After more than three months of taking super high doses of steroids called Prednisone, Jacob is finally DONE with that phase of treatment! He took his last dose today.  Tomorrow’s pill box has one less medication in it, our very least favorite on of all 30something that he still takes is not in there...ever again!

I just have to help you understand why we hate steroids so much...

Imagine for a moment that you wake up one morning and look at your kids only to see that one of them you can’t recognize at all.  Well, that’s a bit extreme because this whole transformation didn’t happen overnight at all.  But nevertheless, you’re looking at this kid thinking, “where are you?”  Imagine being with that kid, him by your side pretty much 24 hours a day.  You rarely ever go anywhere without him and usually sleep in his room.  And yet, you can’t find him. Every day, you look for him again, but he’s still under that spell that transformed him into someone you don’t recognize....even when he’s standing right in front of you, sitting at the table with you, talking to you...

There’s so much to this cancer battle that’s been incredibly difficult, but lately since we’ve been home and he’s actually getting better, the hard part has just been missing him. Is that so incredibly weird? I just ache sometimes to see that boy again and when I look at Jacob with his swollen face and belly and his dark hair, bushy eyebrows and long dark lashes... he’s just not the same.  I feel so terrible even thinking it because deep down I know that inside he’s the same kid and he’s aching to come out even more than I ache to find him.  It’s just so unbelievable. I never dreamed that I wouldn’t recognize one of my own kids.  A few weeks ago, I was looking in his eyes and realized that his color was back. Yes, even the color of his eyes changed during treatment.  They were a deeper blue and with his pupils usually dilated, they just looked darker all the time.  That day, looking in his eyes and seeing that beautiful blue color back, I almost cried. At that point, I realized that the color of his eyes and the sound of his voice was the only thing unchanged, the only thing still “Jacob”.   ...except of course for his strong, wonderful heart and his fighting spirit that will always be Jacob!

I prayed, I begged, I cried and asked for just a glimpse...If I could just see for a moment that little boy again and remember what he really looks like and who he really is, I’d be okay again for a little while. But it hasn’t happened yet....so I wait.  If I could just look and see a little something that reminds me of the old Jacob, it would help so much. But he’s just so different right now. 

Now the infamous day has come!  He took his last dose of steroids today!  He is actually done with those awful things forever and I’m finally ready to post a few pictures of him so everyone can realize what I’m talking about.  I didn’t want to post these pictures and didn’t know how Jacob would feel about it, but honestly...he’s pretty fascinated with the whole thing and doesn’t mind at all.  He’s never had a day in all of his treatment when he didn’t want people to see him.  When he lost all his hair, he didn’t care and proudly went out with me and hung out with his friends whenever it was okay for him to do so.  He’d wear a hat sometimes just to keep his head warm or because he likes the hat, but not to hide his baldness.  ...I miss his bald head so much now. Can you believe that?   But I miss his long blonde hair even more.  

Okay, I'm finally posting some pictures.  The computer loaded them backwards from when they were taken so the oldest pictures of before he got sick to the bald chemo kid to all my steroid pictures start at the bottom and go to the most recent at the top.

 These top two pictures were taken just yesterday.  This was the last day he took a dose of steroids and we celebrated, just the two of us and Jericho by going out to dinner at Applebees.  The rest of the family had gone to Tremonton to see Aunt Sierra and we missed out so we decided to have our own fun. It was nice to go out to eat, just us.  But as you can see from Jacob's expression on this top picture, he got tired out really quick and didn't feel too good.  He couldn't finish his dinner and got nauseous so we left a little earlier than I had hoped.  To look at him, you wouldn't think he couldn't finish a meal, but it still happens all the time and he's losing his appetite again really quick. 
Now it seems that it's been so long like this that here's the boy I recognize.  This is what he looks like and this is what I see in my mind...this is my boy now, for the time being...until we get him all back again.  Will I have to adjust all over again to another "new Jacob"?

 Where did his ears go?   ...they are hiding behind his cheeks!  This is the face I'm talking about...I can barely recognize anything "Jacob"about him...can you?
I'd wake up and look at him sometimes, listen to him talking to me and have to close my eyes just to see him for who he is to me...my tough little blonde boy!
It's really amazing...I'm so glad I took these pictures even though they are hard to look at.  I wouldn't have believed it myself without this record of him during this time.

Then it seems to have snuck up on us so fast and all of the sudden, he was changing so much.  I thought the change from his healthy self to the bald boy in treatment from chemotherapy was a drastic change, but those steroids sure did a number on him.  Notice the first one with the brown shirt, you can barely still see his ears around those cheeks. 

Here's one I took during the hospital stay when he had the problems in his lungs after transplant.  This is just days before he started taking the steroids and his cyclosporine hadn't started making his hair grow back yet.  His head is still just as bald as can be...

 These two , taken in the hospital while he still had hair were very very soon after his diagnosis.  The one with his smile was taken right after they placed his central line that you see sticking out of his chest there.  He also had a bone marrow aspirate that day and his first of many lumbar punctures where they gave him chemo right into his spinal fluid. 

This last picture is one I just found today.  It was taken March 7th. Almost exactly one month before Jacob was diagnosed.  His body was fighting the leukemia during this time. This is when he was getting infections, tired all the time and having a hard time kicking any kind of cough or cold.  He had to stop wrestling and we just didn't know all that was going on inside him.