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.   

explanations...

I finally took a moment to read over my last post.  I was feeling bad for writing so angry and scaring everyone.  After I wrote it, I had several people calling me crying and friends who posted on facebook or sent me messages of sympathy.  Were my words that upsetting? I really didn’t mean to scare everyone. So, I read over the whole thing thinking I must have said something that made everyone think he was dying or needed a lung transplant.  I thought I should apologize. …  But, after reading through it all I have to say, that’s just what I felt at the time.  I was scared. I was angry. I was worried and I was bitter the day I wrote that post.  This whole thing is so stinkin’ hard.

Instead of saying sorry for worrying everyone, I will say thank you.  Thank you because instead of just worrying and crying over this whole thing, you prayed.  I know that you did…because I felt it.  I know that you not only prayed for Jacob, but you prayed for me.  Some of you wrote me a note or left a comment to say that you were praying and some of you called to tell me you were thinking of us and praying for us.  But hundreds more were also praying…and never told me so.  I just know.

The optimism I feel cannot be explained. I can barely find the words to express what I feel right now because the emotions are so mixed. I’m still scared, angry, bitter, and it’s mixed with content, peaceful, …I don’t know, tired maybe?  Yes, definitely tired…always tired.  I just know it will all be okay.  The very next day after we received the news about Jacob’s lung damage, I remember wondering why I wasn’t freaking out about it anymore.  Somehow, I felt peace and I was functioning again.  There’s only one explanation for me and that is through the power of your prayers and the love of my savior who once again strengthened me.  “I can do all things through Christ who strengthens me.”  …these words are true.

In addition to the answered prayers on my own behalf, I know that part of the peace I am feeling now is due to the miracle that is happening in Jacob.  I really don’t understand what Pulmonary Fibrosis is or how it is affecting him.  (I’m tempted to google it some more and understand it more deeply, but I don’t dare go there again)  Instead, I’ve decided to go back to how I have managed to cope with all of this and that is to put it in God’s hands and take one step at a time.  The google search could tell me all kinds of things about this stuff, but it can’t tell me the most important thing of all and the only thing I really want to know.  That is how Jacob is going to do with it.  Google can’t tell me how Jacob’s lungs are going to respond to the steroids, nor can it tell me how he will do with this over the years as his body grows and his lungs continue to grow.  Nobody can tell me that because nobody knows, except the Lord.  What He is telling me is to trust Him and that Jacob will be okay.

One thing I do need to mention is that whatever has been done to Jacob’s lungs is done and it’s not going to get any worse.  It’s not like he’s doing anything or being in an environment that is going to cause him further damage or progressively worsen this condition.  We know that the chemo caused it and the first treatment regardless of what the cause is would be to stop whatever is causing it.  Well, we did that on August 24 when he got the last dose of chemo, Almost 2 months ago now. 

Already, we have seen great improvement.  Today at around 4:00, he took off his oxygen and stayed above 90 without any help at all!  He stayed off of it until about 7:30 when he started falling asleep.  As he drifted to sleep and his breathing slowed, he dropped a little bit so we put him back on the oxygen. He is sleeping right now and has just .5 liters of oxygen going.  This is the best it has been in over 3 weeks!  Perhaps the steroids are working? Perhaps the exercises are working? Perhaps the prayers are working.  I’d say it’s a combination of all of the above working together.  Anyway, it sure makes me feel good.

Thank you, and please don’t ever stop.  Just knowing there are people out there who think of Jacob every day, who love him so much and who remember to still pray for him after all this time and through this long battle…just knowing this brings me hope, fills me with peace and strengthens my own faith. 

Side Effects

So we’ve been back in ICS at the hospital for 6 days now wondering why Jacob still needs so much oxygen.  He doesn’t have a fever, he’s not congested, he’s not coughing.  

His oxygen levels just drop if he takes off his oxygen for a minute.

From the look of the x-ray and the CT scans, the docs decided that they needed more information to find out why his lungs look the way they do.  Apparently there’s a lot of things that could cause them to look like that…anything like infection from bacteria, fungus or a virus to simple inflammation or Graft vs. Host to even Leukemic cells or other cancers in the lung! 

So they started out with a Bronchi alveolar Lung Lavage.  (Lung wash) This is done by squirting a little bit of saline down into his lungs and immediately suctioning it back out in hopes of catching some of the gunk in the lungs with the suction to use for testing.  This test went well and they got plenty of “stuff” to study.  -6 days later, nothing has grown.  This rules-out the possibility of infection.  So we’re not looking at bacteria, fungus or virus in there.  That leaves the lung tissue to look at…

The next day after the Lung washing/suction procedure, they decided to go ahead and do the biopsy.  On Friday night, they took Jacob down to surgery, sedated him and cut three incisions into his side.  Two were for cameras and one to grab a snip of his lung tissue.  Once they got in there, they decided to go for two snips.  The surgeon came out to talk to me and explain everything as soon as the procedure was done, while Jacob was still in recovery.  He said he decided to take two snips of tissue to send one over to micro-biology to further test for infections and be completely sure they weren’t dealing with that.  The other sample went to pathology to study the tissue and look for different kinds of inflammation, cellular makeup and other stuff to rule out cancer. …cancer? Really…? That word just isn’t fair.  I know it’s unlikely Dr. but I really don’t want to hear that word! 

Ok, let me put your mind at ease…It’s not cancer.  There’s nothing like cancer in there at all.  The Docs did it really just for peace of mind and I appreciate that because I have to admit that it was on my mind.  It will always be lurking there in the back of my mind. 

So, the samples went out on Friday and after a weekend of professionals studying pieces of Jacob’s right lung, the Nurse Practitioner of the Bone Marrow team came to talk to me on Sunday night to say they have a “preliminary guess” as to what it might be and it looks “drug related” or “drug induced”.   (would you believe I almost looked at her to say, “Jacob has NEVER done drugs!”…haha)  What she meant was that the chemo may have caused damage to his lungs. 

I got to go home that night.  Josh called and offered to come spend the night with Jacob so I could go home and be with the kids for the night.  I went home and switched with him so he could head up and be with Jacob.  When I walked up the stairs, I saw him leaning over the toilet with a scrub brush, rag and a bottle of disinfecting spray!  Josh and Joey had completely cleaned the house for me.  Joey was just finishing up the kitchen when I got there.  Floors swept & mopped, dishes done, countertops wiped down…amazing job for  a 9 year old! I was so glad and thought I’m really going to try to relax tonight, get some sleep and enjoy this night with my boys at home.  …but I was nauseous and sick to my stomach.  I got diarrhea (did I just share that with the whole world? ..eeew, sorry world) 

By the time I started feeling better and the kids were sleeping, I began to go over the “preliminary guess” in my mind and I couldn’t sleep.  I got up and STUPIDLY Googled “chemotherapy lung damage” –stupid.  Can I give you all a word of advice? If your child is ever diagnosed with cancer, don’t ever “google” anything cancer related!  Of course, I was almost to tears reading about chemo side effects, looking down the list of drugs that cause lung damage and counting all the different ones I recognized because Jacob had them. 

I decided to call the Bone Marrow Doc on call.  If I couldn’t sleep, why should she be sleeping?  They said I could call anytime and no question is a silly question to them.  So, I called.  I apologized for calling so late and then asked, “is this Interstitial Lung Disease?  Is this going to be permanent? Is it reversible? Can he reverse it? Will he be Okay?....ugh, I asked a lot of tough questions and then asked, “would you tell me if it was bad?”  She said, she would be straight with me.  “Elizabeth, I have seen a lot of bad things happen to these kids and talked to a lot of parents.  We’ll tell you if it’s bad”.  So, I promised her that I’d go try and get some sleep and that’s what I did… I tried.  –Sleep is so overrated when your kid has cancer.  I give up.  I just wish I could learn how to function without it! I hate trying to sleep when my mind is spinning like that.

In the morning, I got the boys off to school and John stayed home with Jericho.  I was back to the hospital by 10am. ­­ Jacob had just come back from his morning x-ray.  Soon after I got there, the Docs had finished reading his x-ray results and the nurse came in to check his chest tube collection/suction tank to put him back on the suction. (they had sealed the tank to just let it drain on its own instead of suctioning out fluid).   The doctor came to calmly tell me that his lung was collapsed.  Collapsed…seriously? 

They said it so calmly like it really wasn’t any big deal.  

“It’s just collapsed in a small area around where we did the biopsy. It’s just weaker there since the procedure and for whatever reason, some pressure built up and caused that area to collapse. We’ll have to leave the chest tube in until it reverses.  The good thing is that we’ve got the tube in there and the treatment for a collapsed lung is a chest tube…(smile).”  

Hello!!! He wouldn’t have a collapsed lung if we didn’t have to cut into his lung and stick a hose into his side, now would we?!!  -I didn’t really say that, just was thinking it at the time.  She must have read my mind because she then said, 

“Well, we have caused this from the biopsy, but it was very necessary to  learn what’s happening. Now we just have to work on fixing it.  It’s common with lung biopsy, he’ll be fine. Just get him up as much as possible and tell him to breathe deeply to reinflate it.”   

…hmmm, sounds simple enough. Let me stick a hose in your side and then you try to breathe deeply lady. 

Well, Jacob doesn’t have a choice.  He’s got to get up and breathe deeply so I have my alarm set for every ½ hour now to remind me to make him do his “lung exercises”.   He also has to get up at least 3 times a day and do the super exciting walk down all four corridors of the ICS Unit. We start in A Pod, then B Pod, C pod and the ever fun D Pod …and then it’s back to his room…Yay!!! Sounds like fun huh?  You should come try it with us sometime, it’s a blast.

Now comes the rest of the news for the day.  So after the morning news of the collapsed lung and the wondering about possible permanent lung damage and loss of lung capacity, our fears were confirmed with a new diagnosis.  About 4:00 today a whole team of Docs came in to the room to tell me that they had results back from the Mayo Clinic in Arizona that confirmed their suspicion.  “It’s called Pulmonary Fibrosis”. 

Turns out the high doses of chemotherapy drugs, namely Busulfan and Cytoxin that he got during the transplant have damaged his lungs and caused scarring.  The lungs are now inflamed and his new wonderfully hard working immune system is sending droves of white blood cells in there to try and fix things that don’t look right. Well, they can’t fix this so they are just accumulating in there and hanging out trying to get something done.  Since they’re not able to repair this damage, they are just taking up air space in his lungs.  …sorry guys, thanks for trying.

So, the treatment for his Pulmonary Fibrosis is high doses of steroids.  ….Gee, I wonder what side effects those are gonna cause?  The idea is that the steroids will work to reduce the inflammation in his lungs and suppress his beautiful, hard-working brand new immune system that he borrowed from Jericho. Dang-it!  I thought the treatments that make him sick to make him better were behind us?

…Stupid Cancer.

 Please if you’re reading this, say a prayer for Jacob tonight.  Please pray for a miracle that will heal his lungs and reverse this irreversible damage that is in there.  A sweet friend of mine and fellow cancer fighter gave me a hug and whispered in my ear the morning after Jacob’s leukemia diagnosis in April while he was in surgery having his line placed into his heart.  She said, “It’s okay to ask for miracles”. 

Will you join me in asking for a miracle this day?

Jacob is a fighter, but he needs strength to do that.  He needs breath to live his life the way he was made to live it.  Am I selfish? Am I being un-appreciative? Why do I feel greedy  to ask that my son can survive cancer and have his lungs too?  Why does it feel like so much to ask?  There was a day that all I prayed for was for him to live and I’d accept whatever he had to do in order to do that.  I have accepted that he would be sterile, his growth may be slowed, he may not be as strong and his bones may be brittle, he lost all his hair (sooo minor), his skin was burned, it’s dry, itchy and may stay that way…what else? Dare I say I’m okay with all of that?  Why do I have to accept it all? Just swallow hard and live with all this that’s being stolen from him.  His first year of high school, his entire summer, the upcoming winter and snowboarding season…just let it go.  I’m tired of this.  I’m so done with all of this.  I prepared myself for 3 rounds of chemo and a transplant that almost killed him.  He survived that, we celebrated, we’re ready to move on.

Please, pray that we’ll be able to move on and that he can live his life to it’s fullest, breathing deep the fresh air on this beautiful earth doing all the things he loves to do.  Is that too much to ask?

Re-admitted to the hospital.

October 8th was Jacob's 2nd post transplant clinic appointment.  I packed up his meds for the day and a little lunch box with some drinks and snacks and brought his IPad & charger to keep us occupied during the visit.  Clinic appointments can take a long time and I was working out the kinks for our new check-in routine.
I also brought our Blockbuster movie to return on the way home and we talked about what we wanted to do on the way home while we were still out in the car...

On the way to the hospital, Jacob was pretty sleepy and tired.  I had woke him up just before leaving so I wasn't too worried about it.  He needed some time to wake up & he hadn't eaten anything yet.  We arrived at the hospital & on our way through the revolving doors at the front, he asked for a bucket.  I had left it in the car so he said he thought he could make it upstairs and we'd ask for some anti-nausea med when we got up there.  We checked in at the front desk of the clinic and waited about 15 minutes for them to call his name. 

The first thing they do is check vitals so we headed over to that area, checked his weight, height and blood pressure and then they hooked him up to the pulse-oximeter.   ... 84. It needs to be above 90.  The nurse asked him to take some deep breaths and when it didn't work, the number didn't go up... she sent us back to his room and hooked him up to an oxygen tank. Jacob just laid down on the table, put his blanket over his face and tried to sleep through the rest of the appointment.  He was exhausted. (not suprising since he had been without sufficient oxygen for the last hour!) Then the doctors came back to see him and asked how he was doing at home.  I told them that he had gone from needing 1 to needing 2 liters of oxygen at home and that once we got a pulse-oximeter set up at home and I was able to check him, I found that he was dropping oxygen levels even during the day while he was awake.  There was a point on Sunday that he had dropped all the way down to 74.  This was a little alarming so they asked some more questions and rather than giving him the anti-nausea med that he asked for, they said we will hook him up and give it to him in his room over in ICS.  

Huh? ICS? ...are you admitting him? You got him a room already? Seriously??? Yup, he was being re-admitted to the hospital to run some tests and stay on oxygen. They ordered a CT on his abdomen and his chest to see his lungs.  

Well, we assumed that we'd just have a comfortable bed and a TV for the day while they got his tests scheduled, done and then we'd be headed back home.  ...wrong.  We were in for the night, but maybe...just maybe we'd be able to go home in the morning if all the tests came back good.  I was counting on that!

Morning came with orders for more tests.  The radiologist from the night before had failed to do the CT they asked for and did an X-Ray instead.  The Docs still wanted the CT so we waited out the day to get back downstairs for that. ...surely they'd let us go home then, right? --wrong again. 

By Wednesday evening, the nurses & doctors had results from the CT's they had ordered.  Although the abdominal CT checked out ok, the Chest one was really bad.  He had stuff all over both of his lungs and his right was worse than the left.  It didn't look like typical infection, but it was real bad and he was in no condition to go home.  This was dangerous and it could turn bad quickly... so they said we'd be staying for at least a week while they wait for results, develop a treatment plan and hope to get him a little better before he'd be able to leave. 

It's day 6 now, Sunday the 16th.  I'm glad we brought that IPad, and the charger.  It's been the #1 source of entertainment, distraction and time passer while we wait. 

I learned an important lesson the hard way though... Never, ever, ever leave the house with Jacob without an overnight bag, Jacob's blanket and a cell phone charger.  Oh, and don't plan on returning Blockbuster movies on the way home or making any important plans & appointments for later in the day.  I'll just plan on packing up a stay-over bag and leaving supplies in my car from now on.