Category: Mom’s Blog

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The Battle Begins

Although, I guess you can say this journey began September 27th, today felt like the day we begin the fight of our lives, the fight for Jake’s life.  For me, anxiety and emotions were high.  Today is the day our youngest, our Handsome, starts chemotherapy.  I didn’t know what to expect, but my visions were overwhelming.  We began by an early 7:15 appointment on the 20th floor (Heart floor) for and Echo Gram – probably one of the easiest tests J will ever have, yet he fought as though it were one of the worst (which didn’t quite start the day off well for him).  We then headed downstairs to our ever so common 14th floor appointment to check in with our Oncology team, sign admittance papers, and access J’s port for the first time.  As we stepped into the elevator the tightness in my chest was too much. We’ve taken that ride to the 14th floor, how many times now??  A lot!  Something about today was so overwhelming.  As I held my baby, and the floors ticked down, the tears began to well.  I had to face the wall so others wouldn’t see tears rolling down my face, and as the doors opened, I couldn’t move.  Sobbing, Henry led me out and I went to the window with the Twinkle Star Cow to gain my composure before walking toward THAT WALL… in BIG letters, it says, Hematology/Oncology.  People say they hate to use the “C” word but I think I hate those two words worse – they mask the truth behind them… it is the Cancer Clinic…. it is the Cancer floor.  Everywhere you look there are little ones with bracelets.  I can’t help but look every time I see a child… does he have one?  If not, then that child is there because his brother or sister has one.  There are kids with hair, without hair, all with bracelets.  As much as I know God loves the world, Jesus loves the little children, my heart drops and I often find myself asking, why the children?  They are precious, and so little, and so sick.  I held Jake tight as Henry checked us in and we found a sofa by the window.  Jake wasn’t feeling well at all this morning and he wouldn’t let me put him down.  It felt like a fever starting and he just wanted to be held – of course it didn’t help that he had just gone 9 rounds with me, Daddy, and a nurse over a simple Echogram.  Those outbursts wear him out.
We got into our exam room and Jake just didn’t look good. We spent some time with Dr. Zage and Dr. Foster and drilled them with all of our questions.  Then it was time.  Port access.  He was already in my lap so that’s where he stayed so we could confine him as she went in for the chest.  Nothing prepares you for seeing a needle go into your child’s chest with a line hanging out.  It’s so medical and serious and horrible. But we lived through it while Jake screamed and his sobs slowly drifted to quiet murmurs that he hates that doctor (she was a nurse but he doesn’t differentiate yet).  She hooked him Continue reading “The Battle Begins”
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The Warrior Is A Child

THE WARRIOR IS A CHILD

Gazing in the mirror,
I see a warrior’s face.
Fully clothed in armor,
No fear and no disgrace.
A tear it never offers,
A smile it always gives,
No sadness does it show,
But what a life it lives.
Needles going in,
As blood is taken out,
But still no sign of pain,
No cries to make you doubt.
Each day you see this person,
And think that they’re so brave,
Each day you see us laughing,
The tears are ours to save.
So when you see our armor,
And think we’re calm and mild,
Remember this one thing,
The warrior is a child.
-by Terra, age 16

This is the day we’d been waiting for… today all the scans and tests and biopsies come together to give us a final reading,  an official diagnosis, and stage Jake’s cancer.  Talk about nerves!  The whole ride in, Henry and I probably said two words – just held hands.  I found myself on my phone as the texts rolled in… so many sweet texts of prayers and love and encouragement.  But I was a bucket of tears just waiting to spill.  You’ve heard people say “feels like my blood was boiling”…  usually that’s said in an angry type of setting.  Not here, it was nerves and anxiety… to me, it felt like my blood was boiling in a way that had me literally shivering like I was cold.  Over the past week, we’ve noticed Jake worsening.  His fever is now daily and he just doesn’t feel well.  His eyes are deep-set with a purplish color under the eyes and he looks anemic, where he didn’t before.  He walks with a limp and moves slowly – his legs are bothering him a lot.  I can’t describe the fear and concern – there is just a deep feeling of heartache. As we went to this appointment, Jake was running a low-grade fever and had no energy.  A very different child than the one who walked in here 11 days ago, playful and smiley.  I think the doctors were surprised to see him like this.  We too have been surprised at how drastically his health has changed in just a couple of weeks.  We began to talk and they pulled up the images  I’ve said it before, they have been so honest and factual, preparing us well each step of the way.  We were prepared for the formal diagnosis of Neuroblastoma and for the stage to be high.  So far the rug has been pulled out each time we meet.  First, a tumor in the leg.  Then, anomalies in the legs, knee, and pelvis.  Then the large mass and liver lesions.  They began, “As we suspected, it is Neuroblastoma. It is High Level, Stage 4, Neuroblastoma. It is in his bone marrow.  We will treat it very aggressively.  We have every confidence that we will get him to the other side of this.  We will start immediately… tomorrow.”  Just like that.  Tomorrow we will go in and pump drugs that kill into my baby, so we can save his life.  How ironic.  How terrifying.  How did this happen?  This isn’t what we wanted to hear today but there is peace in knowing and going forward. The week spent on edge is over.  They will treat him very aggressively, it will be awful, and hard, and long, and we WILL beat it.  All of his treatments will be inpatient and multiple day infusions. My dear friend, Paula, reminded me today that “the statistics give you a survival rate…why can’t Jake be part of that %?  Someone has to be!”  Her words flooded my every thought and got me through the day – and she’s right!  So, no time for tears because we have much fighting to do.  And so we pick up His sword and His armor for……. the warrior is OUR child!

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WHAM!

Yesterday we went in for our CT scan.  All went pretty well.  They told us we would have to sedate Jake, we didn’t.  He did great. He did need an IV and that wasn’t a nice experience but we were in and out in a couple of hours.  The nurse that was overseeing us was nice enough but not overly warm and fuzzy, but as we left the CT scan, her demeanor changed.  She brought Jake two very nice toys for being so brave and then she hugged me, told me to be strong, and she would be praying for us.  Henry and I just looked at each other, both of us thinking that was odd.  Today we found out why.   Our meetings have usually consisted of words like tumor and mass and anomalies. The word cancer hasn’t been used that often.  This gave me hope, even though the definition of all of those always circle back to the word cancer. They had prepped us that they felt “the place of  origin would be found elsewhere, probably in the abdomen”.  All I’ve been praying for is that it’s not there.  We can deal with bone cancer but it’s hard to wrap your mind around the idea that your child could have cancer in the abdomen – the abdomen is so vague and vast. I’ve been praying and praying and praying all day, all night, every waking moment… “God please take this, don’t let it be in his abdomen”.  Our doctors entered the room together, they sat down and began.  “It is cancer.  It has all of the characteristics of Neuroblastoma and just as we suspected the origin is in Jake’s abdomen.  The mass is about the size of a grapefruit and there are spots in the liver.  The next step is to biopsy and we can do that tomorrow.”  The LIVER!?? I couldn’t breath.  Henry’s eyes welled up, his voice was unsteady.  He asked a couple of questions. They said the abdomen, they never mentioned the liver.  How could they know that though, right?  They continued, “We’d like to start treatments as soon as possible… Jake will need a chest port.  We can do that at the same time as the biopsy.  And while he’s under we need to get bone marrow and see if it’s in the marrow.”  WHAM!!!  We were stunned… how much more?  When will we know everything?  What is the biopsy good for? So many questions and they answered them all .  We found that the biopsy stages his cancer and it gives them the cells to officially diagnosis him as Neuroblastoma as well as other exploratory measures to help them plan Jake’s treatment. We would head into surgery tomorrow and they would have all of the pathology results back next Thursday.  How does this happen?  Last week we were living with a “healthy” four year old boy.  A week later, our world was spinning out of control.