Childhood Cancer Awareness

Well, I know some of you are going to think I'm ungrateful and should stop whining with this post...just be grateful for what I have, and shut up!  But I can't.  I really can't.  Right now, as I type, Sammy is putting together his Millennium Falcon Lego set all by himself and looks adorable with his shaggy long blonde hair and unfairly long eyelashes.  At school the other day, he swung from the monkey bars, showing off his latest accomplishment, hanging upside down and then pulling his own body weight up with his new-found upper body strength.  It is like cancer never happened...except it did...and Sammy is a normal boy again.

But...and this is where you may want to tell me to shut up moaning...if I hear one more person tell me I can put cancer behind me, move on, and try to forget about it all, I may just punch them!  A little harsh I know, but here is why I can never forget or put it all behind me:

Yesterday was my anniversary.  I did not spend it with my family, but at CHAM 9. Yes, many of you will remember that is the floor the cancer children go to for treatment and for neutropenia/infections/complications etc.  It is not the day clinic.  It is the floor Sammy spent most of his first year on, mainly because his body was so ravaged by the chemo, he was constantly neutropenic.

I was not at CHAM 9 with Sammy,  He doesn't even know I was there because I was visiting G, Sammy's cancer buddy.  The little boy who had the same leukemia as Sam and had the same treatment.  He was our guide as he started treatment a couple of months before.  He got better and showed us how great being done is.  Now he sits in CHAM waiting for his counts (ANC) to get above zero.  He is neutropenic from the chemo of his new protocol. He has relapsed and needs a bone marrow transplant.  He has leukemia again.

As I stepped out of G's room to give his some privacy for a moment, I noticed the mom of a very special 4 year old standing by the nurses station.  S has a brain tumor.  She has had surgery and probably needs another as only 2/3 of her tumor could be removed.  She has a scar on her bald head from ear to ear.  She is doing well but her cancer is very rare so everything is unknown.  There are no statistics to comfort her parents.  Not that anyone can go by that as G shows.

I know S and her family through the wonderful families at school.  It was her mom's cousin who helped organize all the SuperSammy t.shirts for his fundraiser.  Now she has made up the same shirt, in a different color, for S.

We try to make cancer go away for Jack and Sam.  I know it will be with them forever because it was such a traumatic time in their lives.  However, they deserve to put it behind them and live happily ever after.

As adults, we can do the same.  But how can we ignore G and S?  How can the faces of those who lost their battle ever leave our memories....and why should they?  We honor them by fighting to end cancer.  We honor Sammy by fighting to end cancer, even if he never experiences it again.  We cannot turn away.  We know too much.

Awareness is key.  The more people who know about childhood cancer (any kind; I am way beyond just leukemia now), the better.  Not because they might donate money to a cancer charity which conducts research (although it helps) but because they might tell a few people and raise awareness too.

I am not asking for anyone to live with daily thoughts about children with cancer.  I am hoping more people come to understand how 49 children are diagnosed each day in this country, and 7 will die.  Then, maybe they won't tell me I can forget about it all and move on.  Maybe they will ask how they can help children with cancer because they realize I may well know what they can do!

Here is Sammy's Team page for his Walk for the Cure.  If you would like to join his team, make a small donation, or pass it on to friends, you will be helping to make the difference and save lives.

Team SuperSammy

Family Fun

So much has happened lately, I really don't know where to begin.  Basically, We have been enjoying life while keeping a watchful eye on swollen glands.  I guess I should start with that so no one is left worrying.

Sammy's glands are 'normally swollen'...just like an other kid....according to Dr. C who is the head honcho of Sammy's doctors.  All is good with Sam.  He remains in remission and his blood work is clear. His running is improving and people constantly comment on how great he looks.  We are very fortunate and inwardly celebrate this almost every minute!


Sammy celebrated turning 8 recently.  I cannot believe he is growing up so quickly.  Where is the time going?  He has wanted his own pet for some time so I thought a fish might be fun.  Here is the final version of that seed idea:

The cat likes them very much indeed!

And Sammy is learning how to take responsibility for his 9 fish:

Sammy had a wonderful party with his friends at his usual place...

And dinner at his favorite Japanese restaurant!

We also celebrated Jack and Sammy's cousin's first birthday. It was wonderful to see the kids playing together and know that Sam could keep up and just join in the fun without having to worry about anything.

Jack has been very busy also.  Baseball is in full swing (pun intended) and we all had fun at the opening day celebration... see here for news on that.  

I was given a delightful Mother's Day.  Having the luxury of a long lie in, we all headed off to the beach as a family, dog included, and walked along the rocks to the tide pools.  I was in my absolute element, being a total beach-lover.  I actually love the walks and views more than just sitting getting a tan....and Mother's Day was glorious!  We spotted birds, found sea-creatures and enjoyed the beautiful views.  The kids played on the rocks and I daydreamed about the beach houses dotted along the coastline.  Heaven!

We have really had some great times recently.  Pushing worry to the back of our minds was very doable and we are glad that we were able to.  Of course, all this activity (and there is more I shall share in later posts) means my house is a total wreck!  I like having no time to take care of it though....nowadays it is not because we are spending weeks in hospital, instead it is because we are doing things, volunteering for things close to our hearts, and having the life we had to put on hold for a few years.

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.

Immunization Schedule - Again!

Sammy had the first of his immunizations last Thursday.  He has to have everything again and the immunization schedule is quite aggressive.  The poor guy had to have three...ouch!   I have to say I put up a fight.  I will immunize my kids as the alternative (getting the diseases) is worse, but I strongly hold out against bombarding children with multiple shots.  On top of that, one of the shots was the MMR (Measles, Mumps and Rubella) that has caused the uproar about its possible connection to autism.

I was not gentle with Brian whose turn it was to go to the clinic.  I was strongly voicing my objections down the phone at him but the outcome stayed the same.  The CHAM doctors feel that, because Sammy has absolutely no protection from any of the diseases, it is better to do as many as they can, especially as he is in school.  I get it, I really do...but I don't have to like it!

Sammy was not a happy bunny either.  He was brave (isn't he always) and took the shots well.  But the muscles were very sore afterwards and that is when he fussed the most.  He did go straight to school afterwards, and played well at recess.  I tried not to be a helicopter mom and stayed away, just checking in with Mrs. F, his teacher, now and again.

Each visit will entail an average of three shots for the next 5 months.  This stinks as, once again, Sammy has to be subjected to needles.  He was most disgruntled that he couldn't have the shots into the vein or into his port!  My how far we have come!  Here is a seven year old preferring IV's and 'hooked' needles jabbing his chest!  Chemo kids are TOUGH!!!

Good news on the blood-work...all is as it should be.  We are not looking at relapse so I cannot complain.

We learned of a new SuperKid at Cham, one connected to us through the families at our school.  SuperSophia is battling a brain tumor.  She has had the Superman Sammy t.shirt redone in pink and purple - the Dora colors, and now CHAM 9 has a new t.shirt to rock!  Please send Sophia all your love and prayers.  She has just turned 4 and is a beautiful princess with the bravery of a lion!

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

Immunizations - Gone!

One of the things we were told, way back in the midst of treatment, was that Sammy might have to have some immunizations re-done as chemo for leukemia can wipe them from the system.  Given that my little boy had been hospitalized pretty much for a year with a WBC of zero, we expected him to need quite a few.   Sometimes I am just not a big fan of being right!

During the last visit to the clinic, Sammy had blood drawn to check for antibodies and the need for more immunizations.  Low and behold, we discovered that he actually needs every single one of them done again!  He has no coverage...nada!  There are a few reasons I am 'slightly miffed' about this:

1. My poor son has to endure more pain and fear, as he will have to get shots each visit until they are completed (I refused to have them all done at once).  

2. I have to tell Sammy that celebrating the end of treatment did not actually mean no more yucky stuff!  He is going to be heartbroken and very scared.

3. I am going to re-go though all the angst of  immunization safety:  I agreed to immunize in the first place but was terrified of the MMR.  Ironically, it was just days after the MMR shot that Sammy was in the ER with strange symptoms...okay it turned out to be cancer, not anything caused by the MMR, but I'm still terrified of having to expose him to these drugs again.  

In the grand scheme of things, I am glad we have to re-immunize rather than face relapse, bone-marrow transplants another fight for life etc.  Things could certainly be worse.  But I am still disappointed that our journey continues to have speed-bumps, albeit much smaller than before.  I look forward to a smoother road in the future...sometime.

I HATE CANCER

I like not having cancer.

Written by Sammy