Birthday Boy

Today was Sammy's birthday party. He officially turns seven on Tuesday, but we used today to do the whole present, party, family night thing together.  To be honest, I'm too tired to write about it....I will tomorrow...so here are a few highlights of the day.  Sammy felt like it was the best day ever!  What a difference a year makes....what a difference the week of the cycle makes!!!

I Feel Like The Clinic is Home!

The sentence, "I feel like the clinic is home," came out of my son's mouth in the car yesterday as we chatted about this morning's visit for chemo.  I was stunned, but in context, it actually made sense.  We had been planning the Clinic birthday celebration (Sammy turns seven on Tuesday), and he was very excited.  He really wanted to be at the clinic with his wonderful doctors, nurses, and his friend (psychologist), Leslie.  Leslie was bringing donuts for Sam to celebrate, Nana was bringing something sweet for the staff...Sammy just wanted to be there.  He sees the clinic so differently lately.

Accessing  Sam's port is often done while Sam is busy with his DS or watching a movie...or tricking Nana by making her leave the room then telling her no blood would come out....followed by a smiling Sammy holding up the vial of blood that had come out first time!  This is the kid who took four hours to drink down a teaspoon of medicine, was still taking off a band aid as the clinic was closing because it was so traumatic, and screamed the place down if a nurse even came near him, never mind with a large needle that needed to get pushed into his chest!

Sam is the big man in town...confident, aware of what is going on...able to verbalize his thoughts and opinions.  Sammy told the doctors that the past steroid pulse was the worst one ever, as was Easter...he had a rotten time and hated the weekend.  He also said how much he is looking forward to this weekend, we are holding his birthday party on Saturday and Sam will be surrounded by family and friends, and he was particularly looking forward to the extra love and attention!!!

So, Sam is very comfortable at the clinic, he is positively jubilant about his upcoming birthday, and he loves his 'clinic family' very much indeed.

Blogging Buddy Katy of Superman Sammy 04/27 by Get Bizzy Blogging | Blog Talk Radio

In case you missed the radio show, here is the link.

Blogging Buddy Katy of Superman Sammy 04/27 by Get Bizzy Blogging | Blog Talk Radio

I'm On the Radio!

Yep!  That's right.  I'm going to join Carolee Sperry at Blogging Biz Mom to talk about how this blog has helped me deal with Sammy's illness.  I will be talking about how the blog got started and the impact it has had on my life in terms of support from blogging friends.  I will also be talking about the way the blog has helped others going through similar situations.

Click on the picture to link to BlogTalk Radio.

BlogTalkRadio

We will be live on Wednesday, April 27th at 6:30pm.  Hope you can join us.  

Happy Easter!

Easter and steroids are not the best partners....suffice it to say, we had the traditional morning after a very untraditional night.  I think we all settled down to sleep around four in the morning.  Sammy had been very itchy and steroidy.

I had spent the night with him, trying to help him sleep, Jack was awakened by the 'body wash' at 3am, and finally I broke all my rules and stuck Sam in between Brian and I to try to get to sleep.

Easter morning began with bleary eyed me taking photos of the Easter Bunny gifts and the egg hunt around the house.  It has been a little on the 'gggrrr' side since then.  Here are the good pictures we got while the moment lasted:

Clinic Today

Today's clinic visit went well.  Sammy was tired from a late night as we had friends over, but he picked up and became his usual goofy self once we were settled in and he was accessed.  Here is a glimpse of our little morning getting chemo.  It is amazing how this no longer phases Sam...he just treats it like a regular part of his life.  I suspect he'll be very glad once it's over though :)

Eating before Chemo!

Getting accessed

Drawing blood

Happy blood came out on the first try (unusual)

Ready to get the chemo

All done!  

Capturing a Moment

Inspired by Ally over at cancerandbabyequalschaos, I am going to try to capture precious moments or interesting happenings each week..."Yeah, right!' I hear you say...and you are probably right...but I'm gonna give it a try.  You know it will be based on the trials and tribulations of my family's fun with cancer, but what the heck!  May as well do something fun now and again :)

So my photo is:

Okay, I broke the rules already...it's supposed to be one captured this week.  But I wanted to start with this as my mum captured it of me in Cornwall, back before my world turned upside down.  We were in a little church, enjoying the beauty within and the view.  I was in my early twenties and my whole life stretched before me.

I love this photo because it brings peace to me...happy memories, beautiful places, family, future...and I never look back with bitterness at my new lot...just contentment.  This photo reminds me of me...the person I still am, and will always be.

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!