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Neurosurgery: Removing the tumor.

Hunter's First Hunt

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The first physical weapon used to hunt down and root out the preditor was SURGERY. The spiritual and emotional battle is faught with prayer and trust but, the physical battle with the enemy begins here.

So, what are we after. We are after a brain tumor named Medulloblastoma.

St. Judes website explains it well: Here's a snippet from the website.

Medulloblastomas are tumors that arise in the posterior fossa region of the brain. The exact cell of origin is not known. These tumors are also referred to as primitive neuroectodermal tumor (PNET). Tumors that have the same characteristics can also arise in other parts of the brain. This tumor type has a tendency to spread to other areas of the brain and spinal cord.
Incidence

* Medulloblastoma accounts for about 20 percent of childhood brain tumors.
* They most often occur in the first decade of life; half occur in children younger than five to six years of age.
* These tumors are slightly more common in males than in females.

This is a picture of a medulloblastoma brain tumor
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click this picture to link to more information about the brain tumor

OK, now we have the preditor in our sights. It's time to go in for the kill with surgery.

Hunter is on his way to surgery.
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He says, "No thank you, please."

October 2004: 17 month old, Hunter, is on the way to Doernbecher Children's Hospital in Portland, Oregon for brain surgery removal of the tumor. We don't know what kind of tumor it is yet. We hope and pray that it will be benign and this whole situation will be resolved with surgery alone.

Salem to Portland; 1 hour car ride.
 
From this point on, we did this car ride either on a weekly basis or every couple of days.  The hard part about it is that the van started to break down and with the loss of income, we didn't have the money to fix it properly.  So, all winter long we had to drive in van to and from the hospital with no heat, and the windows rolled down in the rain and snow because smoke bellowed in from the air vents.  Hunter screamed or cried (too sick to scream) many times from the discomfort.  I tried to keep him covered up with his carseat cover and blankets, but he'd kick them off while tantruming at times. It was absolutely rediculous to have to go through this also - but what could we do... Every minute of every day from this point forward was a struggle to just survive.  We couldn't focus on working extra or bringing in more money to fix the van.  We just worked with what we had. 
 
I consider this an attack from the preditor.  And I'm not talking about cancer, here.  It was pretty obvious that this broken down van thing was above and beyond obsurd. I prayed and prayed that we would make the trip each time.  Even though it was miserable, we never got stuck on the side of the road (other than to stop and clean up vomit and change clothes and blankets in the freezing cold). 
 
The van never broke down completely. 
 
Thank God for that. 

At the hospital, Hunter waits with an unhappy Dad.
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Dad says, "I'm scared to death and so worried."

This whole thing was pretty scary. Our worst fear was that we wanted the same boy back after the surgery. It kept running through our heads. We watched him play while we waited for surgery preparations to really begin. It was bitter sweet to watch his every move and listen to his every word and sound. We tried to etch everything about him into our memories.  
 
With this kind of surgery there is a great possibility that Hunter could come out of it with permanent damage: unable to walk - like not able to walk at all or have a permanent limp or droop to one side of this body; have slurred speech which could be treated with speech therapy but, still he may not be able to eliminate it completely; and have lazy face (similar to a stroke victom with a lazy slant to one side of the face - droopy eye, cheek, and mouth). 

All of these consequences could be treated with therapy, but sometimes no improvement at all happens.  It was really hard to wrap our minds around submitting a perfect baby boy with no symptoms of a problem to surgery that could destroy parts of him.  This is why I call cancer an invisible preditor.  It was so hard to believe that the preditor was even there. This required a lot trust and faith... in the unseen.  The diagnosis was unseen and the solution was unseen.  

But, I believe in this definition of faith: It's the SUBSTANCE (an actual, real physical thing- substance) of things hoped for; the EVIDENCE (an actual, real physical thing -evidence) of things not seen.  Just the fact that we had faith was substance and evidence.  This knocked my disbelief and denial about the whole thing out of the water and kept me in reality ~ That we really were going after something that was unseen but VERY REAL.  Just as real as our Heavenly Father and his Word, which says that he is the Great Physician and that by His (Jesus) stripes (the beating and crucifiction of Jesus -more real physical evidence) we WERE healed.  HEALED! It's already done! And Amen!   

Momma hugs
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Mom says, "I hope that we get the same boy back."

The next time we see Hunter he looks like this.

Surgery complete
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The main thoughts were:

How much pain is he in? They had him on a morphine drip, codeine, and Tylenol. So, supposedly, there was no pain, but regardless; he looked like he felt miserable. I also thought: I can't believe I let these people crack my baby's head open. And returning thoughts came to my mind: Is he going to be the same boy? Does he move? When is he going to move?

A beat up warrior comes out of the battle:

He had IVs in both his ankles and his left hand, a catheter, heart, breathing, and blood pressure monitors hooked up to his chest through sensors, and his face was all puffy with his eyes swollen shut.

Hunter plays and waits for sedation.
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Mom and Dad etch every word, facial expression, and movement into our memories.

Just minutes after surgery
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We are in ICU

The incision
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5 inches long

He also had an incision in the back of his head from the craniotomy. The incision was apx. 5 inches long and it was held together with dissolving stitches.

Post Surgery Recovery

He moves!
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The first thing he wanted (besides the wires and tubes taken off) is a bottle.

He moves!  Hunter woke up wiggling, twisting, and turning.  He was not a happy guy.  We were so happy though to see him move his body; arms, legs, and all.  I was happy to see that he even reached with perfect aim, with eyes still closed, at the wires and tubes to pull them out (off of his chest and arms).  Some of the wires were stick on monitors and some were IVs, so I handed him a bottle right away to give his hands something to grab ~other than the wires.  He grabbed a hold of that bottle, just the same as he always did and opened his mouth to drink.  His mouth and face worked perfectly to suck the bottle. No lazy face, either.  We were so happy to see him wrinkle is brow when he was mad too.  Both eyes and eye brows furrowed just the same.  A beautiful face and no problem using expression.  Now, we just waited to see him recover even more.  We couldn't wait to hear him talk, help him sit up, and walk again. 

He sleeps.
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Hunter sleeps for a long time again.
He sits!
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Hurray! Hunter sits up. The first thing he eats is some bannana slices.
He tries to play.
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But, still feels yucky. This is what he was like about 1.5-2 days after surgery.
He plays!
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Hunter is finally feeling a little better. He plays with a mobile.

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We are living moment by moment, breath by breath, vital sign by vital sign, med by med, doctor exam by doctor exam, hope by hope, and faith by faith, prayer by prayer. Hunter is progressing. 

 

Even though we are trying to be strong, attentive, alert, and learning so much all at once about cancer, surgery, what the outcomes may be, the pressure of hospital living made things even more trying.  Vital signs were taken day and night anywhere between every 1/2 hour to every hour.  From cleaning services popping in the room to Doctor's exams, we are interrupted from being able to calm down, sleep, or even heal. By day 2 and 3, I really start to figure things out, put my foot down, and set some boundaries with the staff. It was as if they had absolutely no regard for the wellbeing of the patient.  The most important thing to them was blindly going through their schedule of things to do to people as they traveled down the hospital hallways. 

 

On the first night Hunter was so out of it, he slept through everything and I still didn't have a clue that I needed to voice my opinions and boundaries.  By the next day, he cried and fought off every vital sign, and was disturbed from sleeping at all.  Through that night, he hardly slept because every time he finally relaxed it was time for another vital sign, a medication, or a diaper check.  It was so bad that we were being woken up every 1/2 hour -all night.  We also slept in the chair next to the crib.  Hunter refused to sleep alone in the crib, so I cuddled him in the guest chair with me.  I am still angered that the attending nurse didn't clue in enough to find a bed for us to sleep in together.  My body hurt so bad it was hard to take care of him in the morning. 

 

The morning of the third day, the next nurse was appalled when she found out that no one brought us a bed all night.  She arranged for a bed and got rid of the crib.  What sick baby would want to sleep in a jail cell (crib) all alone?  Of course, Mom and baby need to be close.  I am thankful for the nurse that finally helped us with that situation. I didn't even know that I could have made that request.  I just worked with what I was given in the room. 

 

This same nurse also took a moment to listen to me and all of my concerns and complaints (as a tired, harried, grouchy customer).  She also validated and respected my involvement in Hunter's care, my awareness of his needs and well being, and my opinions of how I think Hunter should be treated.  She diplomatically informed me that I have the right to refuse service.  Revelation! - hit me.  I have the right to refuse services???? Yes, I carefully considered the situation, the risks, and Hunter's well being.  I began to make choices in Hunter's behalf and I was determined to find a way to bring peace back to my baby. 

 

So, as in so many situations... things sometimes have to get really bad before they get better.  Keep in mind that I'm on a learning curve also and just beginning to figure out what the hell is going on with him and with this hospital situation.   By this day also Hunter was beginning to go crazy and get sick and nauseous from the toxic meds.  He was in pain and did need the pain medication, but they were also giving him a steroid the decreases brain swelling.  He was getting a lot of meds with a lot of different side effects.  My gut feeling was that he was toxically, over medicated.  I began to intrude upon every med that they were giving him and complain about symptoms and reactions that were making things worst than better. 

 

Through this intervention I found out a lot of information.  One thing that I found out is that children commonly have a hysteria type reaction to the steroid drug.  Hunter started biting, kicking, hitting, crying uncontrollably, twisting, wiggling all about for hours and hours and hours around the third day.  I finally got a hold of a nurse and doctor who thought about things and how Hunter was having that common reaction.  They were hesitant to take him off of the medication because of the potential of brain swelling after the operation, so they agreed to decrease the medication.  But, Hunter also automatically vomited the med up every time for the next 3 doses.  I brought it to their attention the following day (what a night that was) that the med wasn't going into him anyways and there was no sign of swelling in the incision area (which is where the Doc's were always looking for brain swelling) so, I suggested that we stop torturing him. They finally agreed and by the end of the day, Hunter started to resemble a more normal manner (not wild, insane, animal, child anymore). 

 

Between the pain meds which put him in La La land and very sleepy and the steroids that made him go violently crazy, he was up and down like a Yo Yo.  Parent involvement is so important in patient care.  Also, I refused vitals during nap times and I refused to do 1/2 of them through the night.  They actually allowed us to sleep for a whole 5 hours in a row by the 4th night.  Anyone would be totally insane after going through Nazi torture brainwashing hospital boot camp at this point.   

Hunter comes out of bed.
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Daddy hugs at the end of each day.
He rolls around the bed.
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He's still weak but, he uses all arms, legs, & perfect smile.
Disney Sing Along movie time.
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After all of the psychotic drugs wore off, Hunter settles down.
Our boy lives to ride again.
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Hunter still can't walk, but he pushes this car all around the hospital ward.

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This is a miracle.  In FOUR days, Hunter has woken up from surgery, recovered from surgery without complication (like infection or brain swelling), gotten his appetite back, gotten off most medications, sat up, rolled around, and can now push with his feet. 

 
There was a great potential that Hunter may need lengthy and extensive physical therapy to do these things and may never be able to accomplish them because of brain damage that even therapy can not regenerate. 
 
But, look at him!  He's literally a walking, talking miracle.  God is good! 
 
The Doctors give us the release to go home.  They actually came to our room just as Hunter was pulling in with the car.  And they were very impressed with his progress.  They gave us some instructions on how to care for the incision, and how to schedule and use some of the medications and sent us on our way. 

Oh, Happy Day!
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The boys are ready to go home!
Hunter rides home
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I load Hunter up with a feeling of ESCAPE.
Home again.
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Hunter enjoys sitting in his old baby walker to snack and play toys.
Playing trains.
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He's begining to crawl along the floor and lay down to play trains

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Hunter is still making amazing strides.  Each day is like taking care of a child that is catapolting through development.  One day he sits up with pillows, the next he begins to crawl, the next he sits up on his own, the next he begins to toddle around.  It's a joy to watch him develop.  Hunter and I have been through all of this before so I remember what it was like to help him learn these skills. I am so excited to watch him trying, learning, and willing to do all that he can. 

Sitting up.
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After about 3 days at home, Hunter can pull himself up to a sitting position on his own.
Tippy steps.
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Hunter begins to take steps, but he's still very tippy.
He walks!
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In one week, he can walk again. No limp, still tippy. He's going to do just fine.
He skateboards?
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He even tries to skateboard.