Lit Like A Christmas Tree

Written by Mardon Hickford. Posted in Mom's Blog

We left the hospital late last night… there were mixed opinions from a couple of docs on whether he should be released but when one of them came in and said, “if you’re ready, I’m ready to sign your release papers”, we both looked at each other and said “RUN!” He just laughed at us. Jake is still really weak but he’s eating (a little) and he needs to be home where he’s comfortable and not so edgy. We had to be back in Clinic this morning to check blood counts and they were doing his MIBG (like a PET scan). In all of the rush to begin treatments there are still a couple of tests that need doing. This one was in the Nuclear Medicine area – the basement. Kinda reminds me of the old cartoons we grew up on, with Wylie Cyote and others, and TNT explosions… all in the basement. The contrast die lights up the body like a Christmas tree to show all of the areas that are cancer ridden. We knew we’d see some areas we weren’t aware of because of the nature of this disease. The arms were of particular interest, as he has complained off and on with them lately. Henry wasn’t able to be at this meeting so Meghan came. Thank God and thank you, my beautiful Meghan! Seeing your baby put under by profofol, the “MJ DRUG” (as they jokingly refer to it), is scary. They inject and he’s out, as in one second OUT! It’s emotional and I’m so thankful she was there to hold my hand and catch my tears. The test took about 1 1/2 hours and when he came out of recovery we was ready to eat… Chick Fil A waffle fries and chocolate ice cream from the hospital cafeteria! And we DID! By then it was time to head on up and check out the scans. As they pulled them up, they again went into prefacing mode. I’m learing certain mannerisms already and I could tell they felt they hadn’t prepared us well for this or maybe it was themselves that were unprepared. The screen was LIT! The cancer is everywhere. All of his bones. His skull, eye socket, jaw bones, arms, legs, spine…. everywhere. I know she could see my shock as I zeroed in on the skull bones. She was quick to tell me it isn’t the soft tissue, not the brain, just the skull. I’m sure that’s supposed to be reassuring but at that moment, it

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was all overwhelming. We spent a lot of time talking about what it all means and they are still so encouraging that the chemotherapy will take care of these areas. I’m glad, I need their optimism because today was another one of those “unexpecteds” that keep knocking us to the floor. His counts did show low so they are on the decline. They drilled us with the fact that fever means ER. NO chance. NO waiting. Just go! …Got it! Dr. Foster will be out of town this week so she wanted to be sure we understood that this is the week his counts bottom. He is on lockdown. The GOOD NEWS… we went home! We slept in our own beds and we spent time with his brothers and sisters and Gunner! God is good, we get some time at home!

The Battle Begins

Written by Mardon Hickford. Posted in Mom's Blog

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

The Warrior Is A Child

Written by Mardon Hickford. Posted in Mom's Blog

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!