Changes

Sammy with his crab at the school puppet show

Things are looking up! Sammy has realized he is improving, and the effects of chemo are not getting the better of him.  Yesterday, while we snuggled in bed, Sammy began talking about Easter and all the fun things he is looking forward to.  He hopes the Easter bunny will be kind to him even though he is getting older.  Then, out of nowhere, he suddenly remarks,

"Oh my!  This will be my first easter off steroids...no yucky feeling or medicine.  Oh I'm so happy!  I can have Easter without cancer!"  

Sam is so glad to be done and I'm really happy he is enjoying this time....he deserves to!  He also noticed something about his appearance as he was getting ready for school.  He came running out of the  bathroom and shouted,

"My head has shrunk!  I have a really small head!  Is it possible that I have a shrunken head?"  

The concerns were so genuine, I had to contain my laughter.  You see, Sammy had noticed what I had seen for a while; the moon-face created by the steroids has completely vanished.  Sammy's hair is also long and soft again.  The old Sam is back, and there is no trace on his face of past battles.

Mr. Moon-Face - the chemo changes Sammy's features dramatically

Challenges, Promote Your Blog, Win $100!!

While we celebrate the end of treatment in a few weeks, the picture I took yesterday (see above) clearly shows how much of a toll the chemicals we have to give him to fight the cancer takes on his little body.  This is "Steroid Week" an experience I would not wish on my worst enemy.  Hence the need to continue looking for cures and medicines that are less harmful for patients: Sammy is disabled...hopefully able to recover once treatment stops...and we have to monitor him forever to see if late-effects do more damage as he ages. 

If you want a fun challenge, promote your blog, have the chance to will $100 gift certificate to Amazon AND  help kick cancer's butt, click on over to Shannon's wonderful blog designed to help Sammy and the thousands of others fighting now and in the future.

http://www.bethechangechallenge.blogspot.com/

Or buy something beautiful with 100% of sales on select items going to Sammy's Light the Night Fundraiser by visiting 

PLEASE pass this on to others, whether you decide to purchase, take part, or donate yourself...it is all for an amazing cause.

xxxx

September - A Big Month for Childhood Cancer!

I have just come downstairs after hugging my lovely Sammy for over an hour as he suffers severe pain in the testicles and stomach.  We are two days clear of the steroids but they have built up so much in his little body that the effects stay a lot longer and are more severe.

While the usual treatment cycles are continuing and the steroids are getting harder to bear, we are slowly creeping to the finish line.  Unfortunately, the finish line is not the end of the road....our journey lasts a lifetime.  But that is okay....I am going to take a full, get to old-age, need diapers again and false teeth type of lifetime....over any late-effects shortening lifetime!

September is Childhood Cancer Awareness Month.  Funny how Sam was mis-diagnosed by four doctors during the very month everyone should be ultra-aware of childhood cancers!  I, however, did not know it was such an important month before September 13th, 2009.  I had no idea and really didn't give it much thought.  I sent donations to St. Jude's and felt I had done my bit!

Many of you reading this will already know it is a special month.  Sadly, you will be on a similar journey to my family.  You will know the statistics, the pain, and the feeling of hopelessness when cancer just overwhelms you.  Some of you will not have known, not because you don't care, but because pink ribbons get more air time than gold ribbons.


Boston.com highlights some of the children and their families in a beautiful way.  Take a look here   Scroll down to the comments for a chance to read about hope, joy, sadness and loss.  All part of childhood cancer.  As I type, there are 1080 comments!!!!

Statistics are boring, but not when your son is one of them.  So here are a few just to raise awareness:

• This year it is estimated that 10,700 children will be diagnosed with cancer un the United States
• An estimated 1,340 of these children will die from their cancer
• Almost one-third of the deaths will be from leukemia
• Since 1975, there has been a 55% decrease in childhood cancer deaths
• Cancer is the #1 cause of illness-related death in children

http://www.candlelighters.org/Information/AboutChildhoodCancer/ChildhoodCancerStatistics.aspx

Parents, like me, don't always think to ask for a blood test at their child's annual physical.  If blood-work had been done, Sammy would have been treated a little earlier and perhaps suffered less aggressive treatment.  Raising awareness, telling parents (and others) about such things may help reduce the number of children who are diagnosed late into their disease.  Adults are far more likely to be diagnosed early...go figure?

Sammy spoke at the Light the Night opening ceremony.  He will also talk at the LTN walk for the cure on November 5th...he is raising awareness and actively fighting for a cure.  Sammy is seven and still on treatment, but he has not let that stop him talk with the press and discuss his illness publicly if he feels it will benefit his cause.

Please consider supporting Sammy as he walks on November 5th.  You will be supporting thousands, perhaps more, as we raise funds for research to cure cancer and help prevent late-effects ravaging those already burdened with so much.

 Super Sammy Walks for a Cure!

Before Diagnosis

The First Year

Getting There

What a Week!

There are many things to write about Nana's visit.  All will be done in time.  This past week, however, was a little challenging but turned out to be inspiring.

The steroid pulse had its usual stuff...plus severe back pain in Sammy's lower back.  Each cycle we get a new development...what fun!  This week was very intense as far as crying from anger/frustration/pain goes, and we resorted to the Codine several times.  Sam has to feel very bad before he'll take anything.

Basically, the pain and crying continued into the following Thursday.  This is not not usual as, by Tuesday, Sammy generally starts to feel better.  Thankfully he did have his kidney ultrasound scheduled on Thursday which put my mind at ease.  Everything came back okay.  One kidney is slightly larger than the other, but nothing is amiss.

So it has been officially decided by the doctors that Sammy is being affected by the steroids and other chemo meds in a slightly stranger way than they are used to seeing, but it is all good in that it means the meds are working and our goal is closer to being reached.  How do you tell a young child that?

I didn't have to!  Sammy had an amazing discussion with me about the whole thing.  He began by explaining to me that the bad pain was a sign that the steroids were the 'good guys' because they were kicking the cancers butt.  He understood that he needed to grin and bear the last few cycles, and seemed determined to let the whole thing play out.  He talked in story format terms:  the good guys were the chemo meds, the bad guys were the cancer blasts.  The setting was his body and the main problem was the fact the blasts wanted to take over his blood and leave no room for the heathy cells..the other good guys.  The solution was to keep taking his meds and deal with the pain as it was okay pain....he didn't like it but he knows WHY he has it.  Boy, was I listening to this with pride and wonderment!

So Sammy has turned the whole thing around and created a battleground inside his body where, basically, a video game is going on.  He has learned to handle this in his own, unique way, and has accepted things on his terms.  I have gained strength from this; I have a much more positive attitude than I have had of late...fearing the toll on Sammy was unfair and not what I had in mind for my lovely child (well it still isn't, but I am not looking at it the same way).

Sammy has taught me to be thankful for where we are now.  I should have always been thankful...I actually was at the beginning of the journey...but stress took a hold of me and did some funky stuff!  The nurse at clinic this Thursday was really impressed by Sam's blood counts.  All the doctors are too on a regular basis.  THIS shows he is doing very well as far as treatment goes.  I an SO VERY grateful I am in this place, and I know Sammy shows no signs of losing.

Next time I see Sam limp, cry, or struggle with his hands, I am going to try to reflect on his story:  the good guys are beating up the bad guys and the setting (his body) gets a little battered in the process...but the good guys are winning and the setting will be okay.  Sammy sees a video game....I see a hero.

Hair Loss and More

I do not mean to highjack the previous post as I really want to highlight some wonderful blogs and a worthy cause.  However, today has been quite a day.

Sammy is losing his hair again!  I don't know why, except the 6MP and steroids (Dex) have been increased again.  He does not know it is happening yet, and with his feeling unlucky lately (oh just you wait to hear the next installment on THAT), we are hoping it is not too severe and we won't have to tell him.

As for the 'feeling unlucky' phase Sam is going through, I am beginning to believe it too. We already have the broken foot, not being able to walk properly anyway, the frustration of being 'not normal', the bug bite from hell that refuses to go away, the morphine-needing agony of the steroid pulse...oh and the cancer!  Today we added one more:  Sammy has the proud distinction of being the first person ever to choke on the little piece of zucchini the Hibachi chef tosses for everyone to catch in their mouths!!!!

We began with a movie, Kung Foo Panda 2...very fun indeed!  Then took the boys to Sam's favorite restaurant for Hibachi.  Soup, salad, sake....and boom!   Sam was going purple as the zucchini slid right into his mouth and straight down his throat...stuck!  Brian patted his back but didn't see the view I had.  My chair hit the floor as I covered ground faster than you can say "luck" (or some word like that), and then Sam threw up everywhere..the little zucchini piece sitting all alone on the floor thankfully showing me it had come out.  We left with Sammy hysterical, Jack bemused and a little grossed out, and headed home for the much safer option of cereal!

Thankfully Sammy is okay, but he heard the mention of him being the only one ever to have had that happen and he immediately goes into his "Why is it always me?" routine.  I feel the same.....hair, choking and....I really don't want to read much into this but...some raised small red spots on his skin!  Luck...not feeling it today!

Nothin' New

Posting has been a little slow lately, mainly because there is not much to post about....or rather, there is nothing bad to moan about!  Sam has settled into week two of his cycle.  The infection seems to have cleared up.  The intense pain has gone away. And the steroid 'screamers' are over.  All in all it's the same ol' same ol'.

Of course life is not a walk in the park.  (Uh oh, here comes the moan again!)  Sam is really sick of things going wrong for him....from a conversation in school today:

"Why does no much happen to me?  Am I the world record holder for unlucky?  I have a broken foot, my arm is all banged up from catching it in the machine (vending machine accident moments before), I have a HUGE bug bite that is driving me crazy, I have to take all this medicine that I hate, I can't play with my friends and run like a normal kid, oh, and I have cancer!"

Seems reasonable to feel like the world record holder for unlucky at that moment, but Momma Bear, a wonderful colleague of mine, told Sammy that he was getting all his bad luck out and he will have more luck as an adult.  He seemed to ponder this, accept it...and then came the clanger...."Can you promise I won't have any more bad luck?"

Whacha gonna say???

Ah life!  It throws us some challenges at times that we just have to ride out.  I have a feeling we are going to crawl across that finish line with the last ounce of our being!

On a good note....and I like to throw those in too as a cancer blog just wouldn't be the same without them...Brian and I are abandoning the kids for 3 nights (staying with very brave grandparents) so we can go to see Pearl Jam's weekend festival.....nothing like getting away from it all :)  House, dog, kids, cats...all taken care of.  First time alone on vacation with Brian EVER....priceless!  Well, us and 37,000+ other people rocking out to great music :)  Even better, I get to finally meet S over at Thumbin' My Way...a blogger/Pearl Jam nut who has helped me stay sane in so many ways :)

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.

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:

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!