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.

Lessons

Cancer changes everything.  This crazy world with cancer where children are stricken with a life threatening, forever changing, life altering illness ...and there’s no explanation for it.  They can’t tell you why. The child didn’t “catch” it from someone.  In some cases, they were even born with it.  There’s suspicions and “evidence” of some things that we believe to be linked to cancer...but how have these kids even lived long enough to be affected by those things when so many adults and older people have been living with, in and around the same things or worse?  How does this happen?... We just can’t explain it and there’s no rhyme or reason, no discrepancy between who will be struck and who will be spared.  Living with this reality... once you’ve been thrown into this reality, it just changes everything.  

In my world of childhood cancer, I have the privilege of knowing some of the most amazing people. People who’s babies fight cancer every day.  Somehow, this child with cancer affects us moms in ways that I can’t even explain to the rest of the world.  Somehow, we are just forever changed... stronger, maybe - but mostly wounded, and sometimes we don’t feel strong at all, we feel beaten. 

Today, I heard the news that we lost another little one to this cancer fight.  Luca had his third birthday this week and on the next day, he went home to heaven.  This little warrior was special - they are all special.  These kids are extraordinary and they are especially hard to say goodbye to.  The most extraordinary thing about them is how they teach us.  Yes, they teach us.  They are angels...every last one of them, whether they remain here on earth to touch our lives, show us how to live and love and value everything in this world and how to reach out to each other, lift another, listen and how to hope and how to have faith.  Or whether they are one of the most valiant who are chosen to leave this broken world behind and go home to live in heaven with an even greater calling to fulfill there ... these children are special, they are angels. I have learned to see them for what they are and I am grateful for that.  I only wish that it didn’t take this experience to show that to me - and I wish I could find the joy of knowing that my own son is among one of those special angels on this earth...without having to watch him suffer, change and live through this painful experience. 

I met Luca’s mother in the halls of the ICS unit at the hospital several months ago.  Luca was recovering then, almost ready to go home again.  His mother had been through so much, she had seen so much...   years of fighting this disease with her precious son had taught her so much and we stood in the hall there in the hospital sharing our stories.  She was discouraged, even a little afraid to share her story with me since I was still so new to this battle.  Her battle with Luca had been so hard and she had been close to losing him before...she didn’t want to scare me, but she was so honest and wanted me to know how strong her boy had been, all that he had been through.  There was one thing she said to me there in the hall that day that I will never forget.  She said this experience is not for them...they have nothing to learn from this.  They are already perfect.  Heavenly Father didn’t give them this trial so they could personally learn some amazing lesson in life - but it is a lesson for everyone else.  It is everyone acquainted with that child who will learn and must learn from this experience. We are here to help them through it, comfort them and love them through it...and they will teach us.  

I have thought about her words so many times since that day we met and when I learned that Luca was going home from the hospital after his cancer had come back...again, I thought of our conversation in the halls together and understood why she was so discouraged that day.  She had been facing this reality for far too long.  The news that little Luca would not be able to have his bone marrow transplant that would give him a possible chance to beat his cancer was devastating.  I thought of Luca and his mommy and his family every day...wondering how they could cope with such news, how they would spend every moment with him, cherish every little bit of him that he had left on this earth - knowing that it was short and that he would be going home to heaven soon.  It has been too much to take in, just thinking of this and praying that I will never have to endure such a time.  No parent should ever have to do that-anywhere, ever.

His mother was right....I have learned so much from Luca.  So much from each of these children.  I’ve learned so much from Jacob.  He has no idea what he is teaching me, but he is.  Watching your own child suffer as he has and during that experience, being introduced and becoming intimately acquainted with the other children suffering and fighting this disease.  Fighting for their lives - no fault of their own - for no explainable reason... I have learned so much.

I can only imagine what it must have been like for Heavenly father to watch his son suffer...and then die.  This experience has shown me if even just a tiny inkling of that pain He must have felt.  The first response is to want to take his place.  He doesn’t deserve this. I want to take away the pain and do it for him. If I can’t do it for him, then let me feel what he feels, let me understand so that I can ease some of his pain. But I can’t.  No-one else can do this for him. 

Another mom that I met taught me something too.  Another little conversation in the halls of the hospital between two moms fighting the battle with their babies.  Her son has Neuroblastoma and has been through every kind of treatment from chemotherapy, radiation, stem cell transplant and even a few experimental studies. He has been responding well to these treatments, but Neuroblastoma is a long, exhausting and very difficult battle and they continue to fight.  She said someone once asked her why she’s not angry.  How she can have faith in a God that would let this happen to her son.  Why is she not mad? She replied, “I am not angry.  I believe that he chose this.”  Chose this? It was the first time I had heard anyone say or believe such a thing, but there are other moms who have felt it too.  Somehow, before these little souls came to this broken and corrupted world, they may have chosen to be one of the precious little ones who would suffer here and touch the lives of hundreds if not thousands of people with their stories. Changing lives, teaching us.

Is that too hard to believe? ...isn’t that what Christ did?  If you believe in Christ and what he did to save us, then it shouldn’t be too hard to imagine that we could also have known what we were headed for when we chose to live here on this earth.  Perhaps, they volunteered...just as Christ did - and wanted to make a difference.  If you don't believe in Christ, then I hope you are still touched by the lessons that these children have to give. Some will choose to respond to these stories with anger...for that I am sad and it breaks my heart to think of anyone in the world going through a trial like this without faith in something to help them through it.  If they are angered though, I have to say these children are still making an impact, a cause for good because that anger should channel us to find a cure and stop this disease. Either way, they teach us. Either way, they create miracles and make the world a better place.

This is why I was driven to write today...After months of not finding the time to write about this journey of ours. Months of no posts to Jacob’s blog or even much to my ‘wall’ on Facebook...I wanted to drop everything today to write this feeling down.  Because Luca’s mommy believed that her son had something to teach us and if I can learn from him, I have to share what I have learned so that everyone can be touched by the love and the life of that little boy. 

How can a mother endure this pain of losing her most precious, most beloved child? How can she still stand? How will she ever smile again, ever feel joy again, ever really live again? ...it’s only through the miracle of Christ, his love and his atonement and the promise that she will one day see her precious boy again.  It’s the knowledge that her son is in the loving arms of a heavenly father and that he is now made whole, his body perfect and no longer feeling pain or sorrow.  He is serving there and has a glorious work to do there.  He’s not really gone. 

Today she said, “We know that Luca was welcomed back into the arms of his Heavenly Father and that as we kissed Luca goodbye our Savior kissed him hello....”

Soon after Jacob was diagnosed, I was given this story to read.  It's called "The Brave Little Soul".
I share this story today for Luca...

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

Steroids: Prednisone - HATE them!

Steroids are horrible, nasty, evil things.  How can a few little pills transform a child so quickly and change him so completely?  He started with 140mg per day: 70 in the morning and 70 at night.  After the first month, they let him start to taper beginning with the evening dose and said it would help him sleep. So, for the past 7 weeks, we have been dropping 10mgs off the evening dose each week.  Last week we were down to the last 10 and looking forward to Monday when he wouldn't have to take them at night anymore.  Well, our farewell to evening steroids didn't go quite as planned.
With the bone marrow aspirate that he had to do yesterday, he couldn't eat anything after midnight the night before.  Absolutely nothing in his mouth after 11.  Well, that means he missed all his morning pills.  He didn't mind that, it was actually a wonderful treat for him to get to skip half of his daily 40+.  Well, you can't just "miss" steroids once you're on them.  You have to taper them very slowly because they do unimaginable things to your body and getting off them is actually very very painful.  I called the clinic last night not knowing what dose to give him since he missed his morning 70 and now it was time for his evening 10.  The answer?... take all 80 at once and go back to your regular schedule tomorrow. Huh? are you serious?? ...woah, it's going to be a long night! See, along with everything else they do, steroids give him insomnia and don't let him sleep.
Jacob had this "brilliant" idea that maybe if he took them right before he was ready to go to sleep, he'd fall asleep before they had a chance to mess with him.  Maybe he figured he would have some bad dreams, but get to sleep through the nightmare.  ...wrong.  Right around midnight, his oximeter beeped because his oxygen level was too low.  The tubing to his nose from the oxygen machine had slipped out of place.  It woke him up and we adjusted the tubing.  His "saturation" recovered but then the pain started in his back, then spread to all over and to his legs where the biggest pain settled right into his knee.  Soon he was rocking back and forth in his bed and pulling his legs up, then stretching them out, bent, straight, side, back, other side...nothing helped.  I gave him 2 oxycodone and 1 ativan.  Ativan helps with anxiety and he was beginning a full on panic attack.  His breathing got short, and fast, and heavy.  Then he started just growling and moaning, it was horrible.  I had flashbacks of life in ICS at the hospital while he was going through chemo, but even then, his fits were not this violent.  He wanted to punch something but there was nothing he could safely hit.  I offered him stuffed toys or a soft ball to squeeze in his palm.  No, not interested.  He told me to just go sit on the couch, "there's nothing you can do mom".  So I did.  He didn't want me rubbing his legs or feet now, he just wanted to be left alone. Maybe he was afraid that he would hurt me.  He was not himself at all.  I decided to go sit down and look up steroid effects and see if the Ativan would be expected to help any time soon. I sat there, feeling helpless, listening to him as he growled, and moaned and tried so hard not to scream.  Then I heard a thump...he had hit the wall by his bed.  I told him to be careful. It didn't happen again.  I'm assuming that hurt pretty bad.  Lesson learned...
Finally after 1 1/2 hours like this, he began to relax.  By then he let me rub his feet and legs.  As I did so, he seemed to finally drift off to sleep.  I got to sleep about 2am once I knew he would be okay.  I'd love to say that I slept then....but Jericho woke up at 3 so I went to lay down with him to get him back to sleep.  Slept there for an hour or so until it was too uncomfortable around 4:30 and then got in bed with Joshua since his room is next to Jacob's and I wanted to be sure he was okay.  I woke up again at 6 and tried sleeping in my own bed next to Josh, but he had to get up at 7 so that didn't last long and I gave  up trying by 7:30.  I wish I just didn't need sleep.  It seems like more stress trying to get it than to just learn to live without it.  I know that's not true, but when virtually every night goes like this one to some degree...you learn to live with 2 or three hours of sleep and just keep going.