You Can Tell Things Are Getting Better When....

We still have a long road ahead...the rest of Sammy's life, in fact.  But I am beginning to see that each stage has it's pros and cons.  The earlier stages were, obviously, more immediately harrowing.  Read the earlier posts to see details.

Now we are in the maintenance phase, there is a more 'normal' pattern to our lives.  Three week cycles provide us with the stability of knowing when Sammy is going to grow steroid 'devil horns', when he will have the Vincristine pain, and when we can plan something fun as he will be okay.

What I have noticed lately is a mixed blessing.  Sammy is really becoming aware of his inability to do things.  I mentioned this before in the post Questions From A Six Year Old.

A couple of days ago, I watched Sam 'run' around the playground with his friends....last as usual, with the limp and gait which sets him apart from the others.  We stayed at school late that same night to watch the annual talent show...great fun.  I also met the father of one of my former students.  He survived cancer twenty years ago and is now a big player at the Leukemia and Lymphoma Society.  He and Sammy exchanged port stories...Mr. M had his on the same side, but his was external, Sammy had the Port-a-cath....buried under the skin.   Connection made, stories shared, offer of help if ever needed gratefully accepted.  We headed home.

But at the end of the day, Sam was sad and melancholy.  He was upset but didn't really know why.  As usual, we did our little talk and out it all came:

Sam is sick of being the one everyone knows as having cancer.  He is sick of not being able to run, and he is sick of having a port!  The last one really surprised me for some reason.  Then Sam explained that he just wanted to be back to 'normal'.  No amount of telling him "he is 'normal', he just has some extra things to deal with," helped...duh!  But I had to try.

This time, however, I did not have the heartbreak I had previously during one of these discussions.  I was beginning to realize that, as Sammy was getting upset at his lot, it was because he was feeling so much better, healthier, able to get on with life!

So, you know things are getting better when...Sammy is ready to take on the world as a non-cancer kid!

LP and Hallucinations

The LP is done and we are in mid-steroid/heavy dose chemo frenzy.  Crying, laughing, angry, sad, angry, crying, mad, hungry, screaming, crying, eating, confused, more crying...and so it continues.  The good news is it lasts for five to six days and then it is over.  The bad news it, LONG TERM MAINTENANCE goes on long term and is rather more ongoing when you are in the middle of it!

The actual day at the clinic was pretty standard: finger prick, blood-pressure, height , weight, temperature check, run through vitals and weekly history, provide new schedule for meds of the cycle, go to back to access port and find NO BLOOD comes out, counts actually COME BACK ON TIME, (not usual), Pentamidine (antibiotics) administered, try for blood again.....

Then we were taken to the Day Hospital across the hallway for the LP.  Sam was cranky at this point as he could not eat.

Leslie came by with the monkey Sammy has been 'taking care of' as part of his therapy..not interested today.  "He's feeling okay and doesn't need anything." was Sam's reply.  

Finally the anesthesiology team came in to take Sam down to the OR.  I had to stress how bad his cold continued to be, and they said they would try the procedure but take extra precautions and stop if they had to.  

Sam walked to the OR with no shirt, just as you see in the picture above...he got many comments about being "Mr. Muscle" etc. but he was unimpressed and fully focussed on the job at hand.  In fact, he was terrified!  I knew this due to our bedtime discussions over the previous few evenings, and the poor guy was now ready to bail!  

As we walked into the OR, Sam held tight onto me and said he couldn't do it this time...he was too scared.  Eventually there was me on the bed with Sam in my arms talking about Japanese food and his big party.  

Sam was calm enough to drift into a twilight state..I was told his eyes were open because he was given a different medicine this time (due to cold) and he was still awake but would not remember a thing.  

I knew this to be true as Jack had the same meds when he has his LP back when he had Meningitis...but I had been allowed to stay with him then and saw how Jack's stress was despite the meds...Jack remembers nothing, however!

I was told I could leave....I wanted to stay so badly...and Nana and I waited in the waiting room.  Within about ten minutes Megan, the Nurse Practitioner, came to tell us it was done and Sam was awake and in recovery.

We went in to see quite a sight!  Dr. G, who had performed the procedure told us Sam was the most delightful child ever!  Agreeing, but not sure why this was said, we went in to find my son tripping his socks off with a medical version of a PCP induced hallucination!

Sammy saw so much going on on the ceiling of the recovery room, we decided he was actually reliving  a Super Mario video game.....occasionally I would need to redirect the action so that the good guys (the stars) were winning against the bad guys (the walls) or else his heart rate went too high!  

Finally Sammy was back in the land of the non-tripping people.  Dr. G explained that Sam had been so nice and friendly when in the OR...and people on the PCP-style meds show their true colors when on it, so he felt Sammy was truly a lovely young boy!  

After and hour of lying down to avoid a headache, we went back to the clinic to try to draw blood so Sam could have his other chemo through the port.  Blood had to be drawn so there is no doubt they are tapped into a vein for the chemo to go into.  Two doses of clot thinning meds later, we had blood and the last of the poison  chemo was given.  

Sam had Methotrexate, Cytarabine  and Hydrochloride intrathecally, and Vincrisitine through his port.  he started his steroids and 6MP doses orally..no wonder the little guy is feeling so bad!  

Sammy In Make A Wish Newsletter

To read the text, just click on the picture and then click on it again to enlarge.

Sammy Super Swimmer!

Just a quickie to update everyone.

Sam has just graduated Swimming Beginners I.   This is a HUGE achievement when one looks back over the past year and a half.  I am so proud of him.  He moves on to Beginners II in April.

Jack starts therapy on Thursday.  He is also going back to Gilda's Club for the  Support Group on Tuesdays.  I really hope it helps him.....more about that on his blog.

Brian's toe is slowly recovering...he broke it!

I am wondering why my therapist (gosh that sounds weird) has three weeks between appointments????  Perhaps this is not the right person for me.  I did like him but might need more regular visits...or not...we will see.  So my Cancer Parent friends.....my next piece of unsolicited advice is to be prepared to change therapist if the first one isn't meeting your needs.  I will keep you posted on my decision after my next appointment.

Well, that's about it until Thursday when Sammy has his next LP.....how I hate those things!

Therapy

So many have been asking why I haven't been posting.  I am not really sure why, except that I have been having what I am calling 'delayed anxiety' over all that has happened over the past year and a half.  Basically, anxiety about our situation has set in and I finally dragged my butt to see someone to help me cope.

Sammy has been doing very well, steroid pulses aside, and has not been neutropenic or hospitalized for a long time, (watch me jinx it now)!  Yet I have been panicking, often in the middle of regular activities, about Sam, Jack, the house, school, putting on weight, which direction to turn in my life, and of course, the big one...relapse.

Finding myself unwilling, almost unable to make it through the day, to get off the couch or become motivated and excited at work, wishing night would come so the kids would be in bed and I could just be alone in my own thoughts...not healthy!!!!

"Well, you have been through so much, I'm not surprised you are feeling it!" so many have said.  But that is not good enough for me....I can cope with anything....I know I can.  The reason I know this is because I am willing to seek help, find support, get my butt into gear again and start living life.

So help is what I sought, and it was amazing to spill out all my angst at a total stranger....REALLY.  I had never been to any form of counseling before, I didn't ever think I would.  However, I strongly recommend it to anyone dealing with a child with a serious illness.

Strangely, the first session was okay and I left feeling like I was on to  something....then spent an hour parked at Binny Park, crying bawling by eyes out.   I was miserable for the whole week, almost debilitated with the feeling of absolute failure and depression.  I did not move, I did not speak, I just went to work, did my thing, came home and crumbled.  Brian was unbelievable in helping me through this stage by just doing everything!  The next session was a little easier, I was sad for a couple of days, not the whole week.

Now I am feeling a release from so much anger and panic.  Well, actually that is not quite true...the anger and panic is till there, but I can push it out again and cope...most of the time.

Today the sunshine was a happy thing...I played outside with the boys for hours.  We sang to Alice in Chains, The Ramones, and the Black Eyed Peas as we made lunch together, and I enjoyed being with my boys again.

Sam still battles cancer, Jack is about to get therapy to help him with his situation, Brian has a broken toe...but I am able to cope with it all again.  We all need help at times, my time is now...just as life was becoming more normal.  Perhaps that is why I began to crumble, I am not in the 'shocked to my bones' stage anymore.

Why am I sharing all of this?  Because I'm acutely aware of the audience this blog has attracted....many people view the posts from sites such as www.cancerkids.org and I know how hard this whole experience can be.  Seeking help is part of the journey...I realize that now.  Sometimes a total stranger is the person who can make you feel better because they are totally detached from your situation.  They are paid to listen, there is no need to sugar coat or be guarded so you don't overburden wonderful friends.

Today is a good wonderful day!

As It Is

Today I am directing you all to a blog that helps me when I am feeling at my lowest.  The title of this post is the actual title of the blog post from the amazing Galen Pearl.  This post is about her own struggles with her son's autism.

I read it and immediately connected to the feelings and emotions of a mother trying to do the right thing. Not getting it right all the time.  Wrangling with the feelings that come with that.

BUT, Galen does not dwell on the negativity I often feel.  She draws from her own belief that we can be HAPPY, if we work at it.  Happy is not a word usually associated with having a child with a life-threatening illness or chronic condition...but her words make sense universally.

Please take a look at As It Is by Galen Pearl on her blog: Ten Steps to Finding Your Happy Place.  I may not have found a way to stay happy all the time, but there can be a lot of comfort for many people  there.

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!