A Turning Point

Turning points usually describe moments where the progression of events changes for the better.  Like when a football team is down and gets a key interception, which gives them momentum.  This past few days leading up to Christmas has been another kind of turning point, one that we hope will not be a continuing trend.  The next 7 months of chemo suddenly started looking much more daunting after our first experience with the dark side of cancer treatment.

This all started on Friday when me, Jake, and Ethan were out Christmas shopping for mommy.  We went to Stonecrest Mall and had a good time, but around lunchtime Jake started acting very clingy, like he didn't feel good.  He refused to eat and I carried him most of the time we were there.  As the night wore on he began complaining about his throat hurting, and after consuming a yogurt drink for breakfast he totally boycotted food and drink.  Around 4pm we decided that between his unwillingness to eat or drink along with a mild fever it was time to call the Aflac Cancer team and get advice.  They prompted us to hop in the car and bring him in (over an hour away).  There is one good thing about being a cancer patient....you get bumped right to the front of the ER line.  We waited a total of about 15 minutes from walking in the door to meeting with an on call doctor.  When Jake's throat swab came back negative for Strep Throat we were admitted, and the thought was he had mucositis.

This was a new word for us...we had heard "mouth sores"...but this sounded more official.  Basically the mucous lining of Jake's digestive system was becoming inflamed, and he had no way of fighting it because his blood counts were low.  We were brought up to the Aflac Center and placed in a room, and settled in for the night.  I remembered in the ER the nurse asking if I wanted morphine for Jake....I told her no and thought "holy crap it's just a sore throat....I'm not trying to sedate him".....I had no idea.

He was given Lortab and around 4am we realized that this was not working, he was waking up screaming every 2 hours or so, so I gave the okay to give him morphine.  At first it was small doses, and he would sleep for a few hours, waking up in pain again.  Around noon the doctors made their rounds and agreed to just place him on a PCA pump, giving him a continuous stream of a heavy narcotic.  Even with this the button to give him an additional jolt of this drug was necessary on a near hourly basis.

I'm not going to try and sugarcoat this and say that everything was okay, that Jake was having fun, and that we were all smiles....not this time....not by a longshot.  Watching my son writhe in pain from time to time because he simply needed to swallow saliva, and watching as his fear grew not being able to understand why he was in such pain and that daddy couldn't make it better is the most difficult thing I have ever been a part of as a father.  He acted in ways that I had never seen, wanting me to lay with him and then holding me by the neck like I was a teddy bear.  He wouldn't let go of me to let me adjust myself to a comfortable position in bed.  When his fits of pain would hit he would kick and cry, looking at me with a sad face saying "please stop this....it's what you do, right daddy?".  It is by far the most helpless feeling there is on earth, to hear your child cry and not even be able to soothe their mind, let alone their pain.

Needless to say Jake is going to be there a couple of days longer, and Kait is with him tonight, and at least tomorrow night.  I think best case scenario at this point is he recovers by Thursday and is able to go straight into chemo, keeping him in the hospital for about 10 days in a row.  Worst case is this delays his treatments, and hurts his chances of beating this ever so slightly.  We weren't able to spend Christmas together as a family, which hurts but is so secondary to what our little man is going through at the hospital.  This will continue until his white blood counts recover, and his body can begin to heal the wounds in his mouth and throat.

I said this is a turning point because this has opened a door that we were hoping would never be touched.  This door is scary, and may be a regular scenario we have to deal with.  Mucositis is something that can be a one time deal, or happen nearly every time he gets that particular drug in his chemo rounds.  The idea of my son going through this monthly for 8 months makes me sick to my stomach, and suddenly makes functioning in a normal capacity in life a little more challenging.  Hopefully this is just a one time bump in the road, and not the beginning of a darker path.