Leukemia - On Our Minds Today!

So we finally had the "moment".  The one I knew we would have...eventually.  I just didn't realize how comfortable I had got until it happened.  So you're not panicking, Sammy is okay.  I am a little shaken and firing on major adrenaline with a massive dose of the 'oh craps' thrown in. Here is why:

About three days ago, Sammy came to me with pain in his neck.  It was the side his port had been on, so I figured he may have some aches at times or he was sore from all the playing he has been doing lately.  As I felt his neck, the hairs on the back of my neck stood on end..Sammy had lumps down both sides of his neck.

I had watched Sammy's neck develop swollen glads three years ago and, being completely ignorant of the signs and symptoms of leukemia, I did not rush off to the doctor.  We all know how that turned out.  This time, I still did nothing.  I observed Sammy and decided to wait it out a little as there is a lot of yucky sickness going around.

Today, however, I couldn't ignore my nagging feeling and I asked the school nurse to check Sam out.  She felt that his glands warranted a trip to the pediatrician.  Now, most teachers would call, make an appointment, and keep teaching.  Thankfully most teachers have not had a child with leukemia.  When a nurse says go, I go!  It was lunchtime and I got an appointment immediately (a perk of being a survivor) and my Principal wonderfully agreed to get my class covered so I could get back home to numb Sammy's finger ready for the blood draw.

I think a lot when I drive.  This drive shook me up bad!  I relived the panic and fear just after diagnosis.  I tried to push away dark thoughts about bone marrow transplants, radiation and more bloody steroids.  Leukemia is harder to get rid of the second time around.  Fear is a powerful emotion.

One of the toughest things to do is pretend all is well when you are crying inside.  Moms have perfected this art when it really counts.  I had to really conjure up my 'inner mom' and chat with the kids and pretend all was routine....Sammy still considers random blood draws routine.

The bottom line, after a very long doctors visit and through work-up: Sammy may have a virus as his counts are a little off but nothing to make one scream off into the sunset with manic desperation.  The doctor did measure Sammy's lumps, and we have to go back in two weeks to see if they have changed in any way.

The next two weeks are going to be very long.  It is Sammy's birthday on Thursday and we have his party on Saturday.  All has to be fine and jolly.  I reckon I can keep a stiff upper lip and keep myself almost rational about all of this.

Sammy looks and acts well.  He has no other signs of relapse.  He recently saw his doctors at CHAM and he was 'all clear' then.  I have to hang on to this.  I WILL hang on to it.  Sammy gives me strength so I am in good hands.  I'll keep you all informed.

Electromyography (EMG)

The results from the MRI were good.  No visible damage to the spine - phew!

The next test for Sammy was the EMG (Electromyography, or EMG, involves testing the electrical activity of muscles. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study.)

Sammy was amazing as ever.  The doctor was very gentle with him and proceeded to look at muscle strength and his ability to walk, grip etc.  The "claw" of his fingers was noted (Sam cannot straighten his fingers and they are permanently set in a claw-like shape), and his strange gait was noted. Then it came time for the electric shocks. 

Sam became very angry that the doctor did not wait for him to ask the questions he had about the test.  He was experiencing pain from the shocks, but his gripe was more that fact he had not been allowed to talk about what was going on.  He kept asking, "Why don't doctors ever let me ask them about things, I need to speak before you do this..."  Mummy instinct told me he was right, but at the same time, the test was almost over and I didn't want the pain prolonged.  I tried to explain this to my very determined and angry young man, but he was too upset about being ignored himself.  Once the test was over, Sam sat in my arms, disgruntled, but willing to forgive.  

Unfortunately the news wasn't as good as I had hoped.  The chemo has caused muscle and nerve damage which will be a long-term issue for Sammy.  He may return to his former self, but it will probably  take years.  He will need therapy for a long time and then his walk and grip may not return to normal.  

Sammy's wish is to be able to run with his friends in the playground.  I now have a new mission...to help grant that wish for him! 

Questions From a Six Year Old

This afternoon, driving home after Sammy's PT, he asked me a question that astounded me.  He asked,

"Will I ever be able to run fast like I used to?"

I wanted to stop the car and hug my little man, soothe his fears, and promise a total comeback from the debilitating effects of the chemo.  That was not possible.

What I could do, however, was calmly tell Sammy that he should get back to being fast once he finishes chemo.

"But are you sure?" he asked.

"Well, your doctors are some of the best, and they say you should get back to the way you were before..."

"Yes, but will I really?"

My superhero was showing me just how aware he was of the way I answered the questions.  He wanted to hear an outright guarantee, and that was something I could not do.

No one knows if he will totally lose the weak legs and limp.   He may never have full use of his hands...therefore, I cannot confirm that this will definitely happen.

All I could do was reiterate how sure the doctors were that he should get better, and remind Sammy that we expect the best results once he has stopped treatment.

We then went on to discuss the magnitude of the party we will be having once treatment is over.  Expect a BIG bash....and Sammy wants to stay up until midnight.  THAT I can guarantee he'll do!