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.

When September Ends

September is behind us, transplant behind us.  September will forever represent the pain, the hope, the wait of the transplant that saved Jacob’s life.  It almost feels like a dream now, looking back, it’s hard to believe it’s really over and although it seemed to drag on and on…somehow it amazes me how fast it all seems now that we are home and the worst is behind us. …or so I thought.

October: Trick or Treat? Definitely just a trick, a joke, a false hope and shattered light at the end of our tunnel… October came and sent us home at last.  It should be forever symbolic of triumph…a battle won, a time to celebrate.  Our plan: get home, get our lives back, be together again as a family…Jacob looked forward to finally getting his “Make a Wish” wish!  He was so happy to be going home and we all just knew it was going to be all uphill from here.  We were so wrong.   We had exactly 1 week at home before the rug was yanked out from under us and landed smack back into ICS for just about the whole rest of October.  October promised recovery…but broke the promise and reminded me that Jacob has a long road ahead of him before he’ll be himself again.  Will he ever be himself again, will he ever be the same? Somehow,  I’m realizing he won’t be.  I believe that with all my heart that he will get his strength back and he’ll recover from this completely…I have to believe that, but right now it’s hard to believe.  It’s hard to even remember who he really is…where do I find that image to cling to?  I need it so desperately right now, but pictures make me cry. I miss the old Jacob, the real Jacob.  Cancer is a theif!  He’s already grown so much since all this started.  He’s grown and changed in so many ways.  Somehow he just isn’t a little boy anymore, he’s matured so much. He’s older and wiser…wiser and more “educated” than any boy should be at his age.  No child at any age should have to wake up every day and have to fight to defeat death, stare it in the face, smack it on the cheek and stare it in the eye…as close as they can take you without letting you go there and then fight his way back to life, day after day after day.  You just can’t do that and expect him to ever be the same innocent, naïve, happy, outgoing and optimistic child that he was before.

Home again was October 28^th.  Finally we were able to go home, once again…hopefully for the last time…hopefully we’ll never have to go back to stay in the hospital overnight.  The 28^th was a Friday.  They asked us to come back on Monday, the last day of October…yeah, on Halloween for an appointment check up in the clinic.  It didn’t feel like Halloween and we weren’t interested in costumes, but Jacob was already unrecognizable…no costume needed.  The steroids were working, doing their stuff and the side effects were showing their nasty head.   The steroids cause him to swell unnaturally.  His whole face is twice the size it used to be…and it’s not because he’s finally eating.  He’s got a double chin and his cheeks are so swollen that they actually hurt!  His belly is starting to swell, and his ankles and feet look worse than mine did when I was 9 months pregnant and I couldn’t wear my own shoes.  The anti-rejection medicine causes rapid (dark) hair growth…everywhere!  Combine that with steroids and you get a complete makeover.  Thick black eyebrows and eyelashes have grown where he once had blonde and on his head has soft black stubble.  The tips of his ears have grown fuzz and of course, his upper lip.  Normally, a 14 year old boy would be excited to see fuzz growing on his upper lip and he’d be excited about his first shave.  I’m sure I would have been sneaking by the bathroom door hoping to get a snapshot of that. But not for this boy…this fuzz was not welcome and not normal.  So in short, we didn’t need a costume for Halloween, you wouldn’t recognize Jacob if you saw him walking down the street these days. 

Are they worth it? The steroids with their nasty side effects are supposed to give him back his lung capacity, reduce the inflammation and stop the immune attack.  On this day, he had to do a Pulmonary Function test.  He’d done one of these once before…just a day or so before going in for his transplant.  To do this test, he goes into a chamber about the size of a phone booth.  In the chamber is a tube that he has to breathe in and out through.  This time his nurse was dressed in a Sponge Bob costume and it was hard not to laugh at the goofy costume with Sponge Bob’s big eyes strategically placed over her boobs.  Jacob did an amazing job not staring.  The boobs are actually a perfect place if you think about it…just look at Sponge bobs face next time you see him and then imagine that square body placed on a nurse’s torso wearing shorts and tights…where would you put his big round eyes?  Her assistant was Dorothy from the Wizard of Oz.  Ok…so they ask him to suck in as deep as he can for as long as he can until he can’t possibly get any more air in and just when he is about to pass out, he has to blow as hard as he possibly can for as long as he can.  All this time you’d think those nurses (in the sponge bob costume and Dorothy) were training to be football coaches.  Yelling at him at the top of their lungs screaming, “DEEP BREATH, DEEP BREATH, HOLD IT HOLD IT HOOOOOLLLLD IT!”  and then “okay now BLOW IT OUT , HARD AS YOU CAN KEEP GOING KEEP GOING….”  Really…she was LOUD!…(really hard not to laugh now)  Dorothy and Sponge Bob screaming at him, coaching him to breathe.  Anyway, they are pretty tough on making him work very hard on this test and he was completely exhausted by the time we finished. 

The test tells us his lung capacity.   He was looking pretty good, at least average before the transplant.  As I sat watching him do the test today, here’s why I wasn’t laughing.  I thought back to the last time.  I remember what the screen looked like the last time.  There’s a line across the middle of the chart and I’m assuming it’s sort of a middle of the road average mark.  Jacob’s line was far below it. No matter how hard he pushed, he couldn’t get his line close to that one.  I remember where his line was on the graph before…the line that showed his “capacity”, his pulmonary function. It was above that average mark.  I wondered just exactly how much different this test looked.  I asked if I’d be able to compare the two.  The nurse said that would be interesting, but didn’t offer to let me see the last test results.  I asked again when we got upstairs to clinic, but Hillary just said, “That would be pointless, we know he’s nowhere near that level, we know what it used to be, but now we just have to focus on where he is now and where he’s going from here.” Okay I said, I guess that makes sense…there’s that optimistic way of coping with this.  Just take what we’ve got and go with it.  It is what it is and there’s no changing what’s already been done.  We have to start from today and go forward.   …okay, ya, we’ll do that…whatever you say. After all, you have experience with these things and we don’t so we just have to listen to your advice and swallow hard, cope with it and do our best to accept it.  …somehow, I still want to see that other test and compare the two side by side.  I want to see exactly how much “capacity”, how much “function” they stole from him.  I want to know. 

They’ve got so much more information about my boy than I’m allowed to know.  It doesn't seem fair. But without the medical knowledge, training and experience to understand all this, I don’t get to know everything.  Even with as much experience as I've had taking care of him through this, by his side through this journey, soaking it all in…there’s still things I don’t get to understand and they don’t explain to me.

Monday’s appointment gave them more information: he's got another funky and dangerous virus.  So, we got a call on Tuesday that he’d have to come back in on Wednesday to get a new IV medicine and a transfusion that he’d never had before. It’s called “IVIG” and it’s another blood product…a first for Jacob.  It’s just amazing how many people have contributed to his survival by donating their blood!  One of these days, I plan to count all the transfusions of red blood cells, platelets and plasma he got and I’ll add that to today’s IVIG infusion.  The IVIG makes the number un-countable because it’s a product that they get from mixing the antibodies of hundreds of different people’s blood.  When they checked Jacob’s labs, they found that he was positive for CMV (cytomelagovirus).  This is a really common virus and they say about 80% of people have it.  In healthy people with healthy immune systems, it’s not a problem. Since we never get rid of viruses, after a CMV infection, it just hangs out “dormant” in your body for the rest of your life and your immune system keeps it from ever getting us sick again.  Sort of like when you get Chicken Pocks and develop an immunity after. Well, when your immune system has been knocked out like Jacob’s was, then CMV can “wake up” and wreak havoc on people with weakened immune systems.  Oh and yes, it’s life threatening if left untreated without an immune system.

Just when I think the worst is behind us and we won’t have to fear life threatening conditions every day, I’m told he’s got another “life threatening” condition.  “But don’t worry…we’ve got medications for that. We’ll keep it under control, we’ll monitor him closely, we’ll treat it if necessary, we can save him from that.”  It’s crazy how we just take it. Just accept another “condition” and go with it, keep going about our day, add another medication to the list and pray that it works exactly like it’s supposed to…all the while, waiting for which ones of the many side effects he will be dealt in the deck of side effect cards. If he gets handed a bad one that he just can’t handle, he has to take another card from the other deck, the medication stack. He gets another medication to offset the side effect card…and hopes the side effects to that one are a little more bearable.  It just doesn’t make sense...but we don’t have a choice.  

Home Again!!

We are HOME! I just have to say this quick because there is so much to do...but I wanted everyone to know he is home and doing great!
His lung x-rays have been progressively BETTER every day! Thank you all so much for praying for that miracle...I truly believe this is a miracle.  He has been on room air, without needing his oxygen for 48 hours now...even while sleeping!
I asked the radiology department if I could get copies of some of the x-rays and they gave me 3 cd's with ALL his x-rays, CT's, MRI's and all imaging they've done for him!
One of these days when I have some time, I'm going to try to make a slide show of the last 17 days of x-rays. It is really amazing to see the improvement from day to day since he started the steroids.

His appetite is back!

Today it has been two weeks since we came back to the hospital to stay in ICS after our one wonderful week at home.  I keep thinking about the Sunday before we came back when I was tidying up my room and I actually unpacked my hospital bags.  It felt so good to put my hair dryer under my sink and my brush in the drawer along with my makeup, lotions and that toothbrush!  I threw out the extra toothbrush since I’ve had one for home and one for hospital for the past 6 months.  Yes, I really believed that we were done with hospital stays…silly me.  Of course, I forgot my hair dryer at home the last time I was at home for the night and then came back to switch with Josh. This morning, after spending the past 2 days with flat hair & looking like I just woke up all day long, I was so thankful to be able to look on the board and see who I know that’s “in” with me and ask to borrow a hair dryer.  I went and knocked on 4401 because she’s on the same hall with me just two doors down.  She had just gone to switch with Daddy. So, I knocked on 4420 and she was happy to loan me her hair dryer.  …now I feel presentable, haha.   It’s nice to know people around here.  …Sad, but so nice.

Jacob seems to be sleeping all the time these past 2 days.  I don’t really know what to make of it except to just hope that he needs sleep because his body is healing.  I also worry though, because I know how hard this is for him and I hope that he’s not just depressed and discouraged.  He has every right to be tired, but it so hard for me not to worry.  Sometimes I sure wish he was more expressive and could talk to me about his feelings more, explain to me just what he’s going through and help me understand and I could help him deal with it all.  But, he’s a boy…he’s a teenage boy, and he doesn’t talk about much of anything.  When he does bring something up, he wants a quick, direct answer and then he wants move on and get back to his movie, his game, his breakfast or his nap…whatever it is, is much more interesting than talking for him. …oh well.

Speaking of Breakfast, being on steroids has done some amazing things. The first of which is to give Jacob an insatiable appetite!  It’s really kind-of funny to watch, but mostly it is so refreshing to actually see him eat.  This morning he ordered a “bacon, sausage, egg and cheese English muffin sandwich”.  You’d think that would be enough, but he also ordered waffles with butter & syrup AND a plate of hash-browns!  The most amazing part is that he ate ALL of it except for one of the waffles.    He actually asks for food before he even opens his eyes and sometimes I look over at him and he’s chewing something while his eyes are still closed! Yesterday, he fell asleep while eating his bacon, sausage, egg & cheese muffin sandwich.  I should have taken a picture…

The hard part about the appetite is that he’s super hungry all the time, but he craves really heavy stuff like sausage, bacon, cheeseburgers, fries, nachos…I think you get the idea.  From what I hear from other moms with kiddos on steroids, this is totally normal and all their kids crave really high fat, greasy, crunchy, salty foods.  The part that worries me is that his poor stomach is just raw right now besides the fact that it’s probably shrunk quite a bit since going through all this.  He eats & eats and then he’s nauseous right afterward.  Then, he asks for anti-nausea meds so he won’t throw up and those make him really tired.  Since he needs to get up and walk around in order to drain the fluids in his lungs, this makes it really challenging.  The doctor explained this morning that his digestive system doesn’t really work well right now because of transplant.  He isn’t able to absorb the nutrients well and he’s not really digesting it well either so it seems to just make him feel sick and go right through him.

So far, the steroids have made him a little bit moody, but really not too bad.  Mostly, he is frustrated over the whole thing…but I would expect him to feel that with or without the steroids.  I think the feeling is just intensified by them.

The best news is that they seem to be working very well.  This morning’s chest x-ray looked really very good!  I am going to ask for copies of these x-rays because the contrast between the ones in the beginning to the most recent is amazing.  I hate that he has an x-ray every single morning and gets exposed to that radiation every day, but then I think of the kids that go to radiation therapy and my heart breaks for them…and then I can’t complain that all he gets is a picture taken. 

His drainage output from the chest tube has been decreasing a little bit each day.  For three days he drained 110 mls each day and then he dropped to 100 and yesterday it was 90. When he gets down to draining around 50 mls in a 24 hour period, they will take out the chest tube.  He’ll then need a day or so to recover and heal from that before he can go home.

We can hardly wait!...

Updates & Improvements

Don’t quote me on this and don’t be too disappointed if I can’t follow through, but I’m going to try to update more often. Sometimes, my updates will be very short but I won’t wait until I have a ton of stuff to say before I post.  I hate the thought of so many people who love Jacob checking on here day after day and not finding any news.  I have met so many families up here in the hospital with kiddos fighting cancer alongside of us.  I love those kids so much and I get very emotionally wrapped up in their fights.  Somehow it helps me deal with Jacob’s battle.  Knowing we are not alone sadly brings me comfort.  It also somehow stops me from obsessing over Jacob’s struggles and difficulties.  There have been many times, many sleepless nights when I wonder about one of those kiddos and wish I could know if they are okay.  Sometimes it takes many days or weeks for the moms to find the time and the strength to write about their struggles and it’s torture to wait for those updates.   I’ll try, no promises, but I’ll try to do better, even if it’s just a sentence or two.  It’s so comforting and encouraging to me to see how many people are following Jacob’s story.  Thank you for reading.

It has been 12 days now and we’re still in the hospital with Jacob.  This morning, the doctors came to see him – as they do every morning – and reviewed his x-rays and his CT scan from the first day with me.  They were pleased to say that they are seeing big improvements from when he was first admitted.  This is so encouraging and very much what I needed to hear today. 

Yesterday, Jacob went for a walk down to radiology for his x-ray and afterwards, he took a walk outside with Josh.  Later in the day, Aunt Wendy and his two cousins Austin & Makayla came to visit.  They read my blog and decided to take me up on the invitation to come do the exciting walk around ICS with Jacob! They all decided that the 4 corridors of ICS were not enough so Jacob took them outside the unit and across the big walkway to the University cafeteria.  They did a lot of walking and it made a huge difference! When the Dr.’s came this morning, they said “keep it up” and “do some more!”  They said the walking yesterday is the biggest reason for the improvements they see.

We just got back from downstairs for another x-ray.  I’m actually looking forward to seeing what the doctors have to say about it.  I’ve been watching his scans every day and now I’m beginning to see the subtle differences and learning what to look for.  It’s a whole new education for me – one that I never wanted or expected to get, but honestly quite fascinating.  So I’ve learned that black areas in the lungs on an x-ray are good, white areas are bad.  When we came in, most of Jacob’s lungs were white, or light gray and there were a lot of white stringy looking lines all over the lungs.  The stringy streaks are still there, but the space in between them is black.  Black is air!  All those areas that were white especially in the lower right lung meant that Jacob was not getting any air in that area.  Those areas are darkening and the upper parts are black.  There is still a section in the lower right lung that is very light gray/white so that’s the part we’re working on. 

 

Plan for today: more walking, more deep breathing, more practice on the incentive spirometer gadget.