Monday, January 30, 2012

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 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 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.

Friday, January 13, 2012


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?’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.