Pre-Existing Conditions

This is a very difficult post for me to write.  Mainly because I know most of those reading it will already know the pain of having a child with cancer, or be a cancer warrior themselves.  I don't need to 'tell' you how things feel!

But for me, I am getting something off my chest...you know I use this blog to do that.  And, sadly, this post does not apply just to cancer, but all conditions which may have lasting effects on a person, no matter how old they are, for the rest of their life.  I include Sammy's brother, Jack, in this post.  He has asthma.  He has a pre-existing condition, just as Sammy does. I am also including anyone with Lupus (my lovely mom), Celiac's disease (my wonderful friend), Crohn's, Diabetes, etc....  There really are too many to mention.  BUT, I guarantee, you will know someone who suffers from such an illness.

So what is on my mind?  Well, there is a big election coming up, as you know.  I am well aware that everyone will have their own political views (we live in a nation that grants us that freedom), and I would never seek to insult anyone for their personal viewpoints.  I do, however, want to share my thoughts.  I am sure many of you already know where this is going.  I am putting my personal faces to this argument, but you could easily think about someone you know.

People who have fought and survived cancer have a much higher risk of getting a secondary cancer due to the treatment that saved their lives in the first place.  Chemo and radiation are toxins designed to kill!  Yet the benefits of saving a life immediately, far outweighs the concerns down the road.  Medical research has allowed doctors to find ways to administer the least amount of toxins in the most effective way.  But almost all the childhood cancer medicines are over 50 years old, so they are still exceedingly outdated and very dangerous.

Sammy will be monitored for cognitive effects.  His IQ may well drop considerably in a few years.  He will also need PT for most of his life to maintain his muscle and skeletal strength.  Every major organ has to be checked yearly to asses for deterioration.  His heart may give out in his thirties.  His reproductive abilities may no longer be an issue....he may be sterile.  He is 8.  He has kicked stinking cancer and this is what he will face forever.

If a certain party is elected into national and local governments, funding for research to continue to improve toxicity in treatments will stop. In addition,  Sammy will not be able to get insurance for any of the aforementioned issues once he is no longer on our insurance plan.  If he relapses, it is likely he will exceed the lifetime cap on our insurance (not that we have one right now, but it will come back), and we will not have the means to provide the treatment needed to save his life again.  We earn too much to get financial assistance, so we would be faced with bankruptcy.  (Fine...if it saves his life...but all it will mean is we are broke and still no coverage!)

Radiation

Jack may grow up with very few issues with his asthma.  He does, however, need medication for it and frequent visits to a pulmonologist.  While this may not break the bank, if he should suffer an attack and need hospitalization, nothing would be covered. That has the potential  to leave him without adequate treatment or crippling bills.  I would sell my soul to help, but WHY should my children have this to face as they grow up to become the new generation of America?

Sammy's first hospital visit after diagnosis cost over $100,000.  We then spent most of the first year in hospital (averaging about $150,000 per stay)  followed by two more years of treatments.  Sammy will go to the clinic for the rest of his life.  No insurance....????


I am a mother fighting for the lives of her children.  Sure, they will be grown up by then...but I am fighting NOW to keep them alive and safe in their future. It boggles my mind that I even have to....but I do!  November 6 is my birthday.  I hope I don't spend it morning the future of my children.

I do not fight alone.  Adults and children are affected by the threat of punishing people with pre-existing conditions.  Here, a hero of mine, Mike McCready, explains why the fight is so important:

Pearl Jam - The Sammy Bracelet!

Pearl Jam is my escape from everything to do with cancer.  But at the most recent show, over in Missoula, Montana, I mixed up the two worlds a little and came out with the experience of a lifetime for this fan!  I am a big Mike McCready fan...he's the lead guitarist.  I was at the show with very good friends and had tickets for a "meet and greet" before the show started thanks to said friends working some magic.  The show was in the home state of another Pearl Jam member, Jeff Ament., and was in support of Senator John Tester.  So it had political leanings and I wanted to do a final last hurrah for Childhood Cancer Awareness Month. 

I wore my Superman Sammy shirt and bracelet because I wanted to talk to Tester about healthcare and share with him about Sammy having leukemia and thanking him (and reminding him to keep going) with the healthcare stuff).  Anyway, I'm next to Mike but behind him and he turns around and looks straight at my shirt and goes to shake my hand. My bracelet was too big and had fallen over part of my hand so he got it in his and looked at it...I quickly explained what it was and he gave me the BIGGEST hug and then took the bracelet to wear....this made an incredible night the most special moment for me. My Sammy's bright orange band on Mike's wrist at one of the best shows I've ever seen! I can't put it into words properly.   :)

No More Words!

Now that we are in the 'after treatment' phase, I am lost for words most of the time.  Sammy's port comes out tomorrow and then we become monthly visitors for blood work, have cognitive and vital organ testing each year, and basically plod on with life.  Cool!

But I wanted to put into words how I felt about this journey and I couldn't...so I cheated and made a slideshow with a song that helps me say it all.  We triumphed over adversity and had a whole lotta love along the way to keep us going.

Love boat captain
Take the reigns and steer us towards the clear,... here.
It's already been sung, but it can't be said enough.
All you need is love

Is this just another phase? Earthquakes making waves,...
Trying to shake the cancer off? Stupid human beings,...
Once you hold the hand of love,.. it's all surmountable.


Love Boat Captain
Pearl Jam

We're Done!

"The sun is setting...the sun will rise another day!" (Long Road)  EV


Well, the day for the sun to rise has finally come... Sammy is off treatment.  Strangely, I didn't leap to the computer to share it with you all as soon as it happened.  In fact, I have avoided this blog for quite some time.  I am not sure why...I just didn't want to post anything.

I do have fun moments to share:

We went pumpkin picking at our usual farm and had fun before treatment was over. 

During week two of the last cycle, we journeyed to Maryland for Cousin David's wedding with the beautiful Chesapeake Bay as a backdrop .  

The boys enjoyed the hotel pool!  Sammy perfected his handstands :)

Then came the final dose of Mercaptopurine.  I never thought this would come.  I captured the moment on camera...felling strange for wanting to.  First I had to crush the pills...

This is our box of poisons medicines....the entire drawer is filled!

Once the pills were crushed, I mixed them with coke...once the white powder was hardly visible, it was time to drink it on down.

Nothing like drinking in your sleep.  Sammy actually doesn't remember most nights.

To celebrate, balloons and gifts awaited the boys on the final day of chemo...Sam would be going into the clinic for his final dose of Methotrexate.  Jack wanted to get up early with him to cheer him on.  

Leslie came with goodies:  A big box of donuts and juice to celebrate! 

 Megan  had to have a hug!

The following day, a surprise awaited us....the entire school (and most of the district) donned the orange Superman Sammy t.shirts again to cheer Sammy at the end of treatment.  We walked out to the playground to a sea of orange and chants of "Sammy..Sammy".  Amazing and very emotional!

So now it is over...except it really isn't.  While we feel very lucky, we still have a long time before Sam is five years clear.  We still have to draw blood and hope nothing shows up in it every month.  We still have to force medicine into Sam to protect him as his body is still weakened from the chemo.  We still have to have heart, major organ, and cognitive testing done to see how Sam is doing.

I don't know if I will blog all of this...I hope I do....but for now I just want to put things as far behind me as I can.  Of course I can't do that really....next week is the big Light the Night walk....it means so much to us and raises MUCH needed funds for fighting blood cancers.  I will never stop raising money to find a cure...to beat cancer....to know other children do not have to go through what my beautiful little boy went through.  It has been a LONG ROAD indeed!

Pay It Forward

My wonderful blogging friend S over at Thimbin' My Way has awarded me this lovely gift.  I am delighted a) because S thought of me when passing on the award and b) because the message is one I really believe in.  So much of this journey with Sammy and my family has been one of accepting things; this started a ripple effect as we sought ways to pay it forward to others.

There is a foundation entitled Pay It Forward, encouraging youths to think of ways to make a difference in the world, help someone else,  be proactive not passive.

Because of the message of this blogger award, I am asking something a little different of the five bloggers I award this to.  All they need to do to accept the award is link back to this blog and award it to five others bloggers who they feel deserve the it.  BUT, I am also asking (not requiring) my chosen bloggers to Pay It Forward and include a link to an organization, individual, group, or anyone who might benefit from others knowing about their needs.  Not asking for money, per se, just letting people know about the situation/condition/plight and having them decide what to do about it.

So, please go visit my lovely S on Thumbin' My Way.

Here are my five award winners...check them out and say hello!

Galen over at Ten Steps to Finding Your Happy Place

Lisa over at Home is Where the Heart Is

Dirty Mouth Mama over at Isa's Leukemia, Our Lives

Caorlee over at Come on Home

Jean over at JeanBurman.com

And now for my way of Paying It Forward

Please take a moment to read about my raising awareness promotion:  This is a family in immediate need....the info is taken directly from the Pearl Jam fan club:

Our friend; fellow fan Christopher Lee-Sye (Leathermosquitoman), his wife Nicole and two year old daughter Carolyn lost everything in the tornado that struck Joplin, MO. We’re thankful he & his family are safe, but they lost just about every material possession they had. They’ve been able to find their pet bunny and three cats, as well as some small valuables.
Needs

Chris mentioned their immediate needs include clothing, shoes, gas and food. Gift Cards are super important and can help them obtain these items quickly. Keep in mind toys, pet care items, towels, personal care items and more.
Shirt Sizes:
Chris – XL
Nicole – L
Carolyn – 4T
Pants/Jeans Sizes:
Chris = 32-34
Nicole = 32-34 women's
Carolyn = 4T or toddler size 7
Gift Card Suggestions

- Visa! (can be used anywhere!)
- Target
- Best Buy
- Toys R Us
- Sears
- Amazon

You can send your gift cards & anything else you might like to:
Wishlist Foundation
ATTN: Christopher Lee-Sye
PO Box 3868
Naperville, IL 60567
We will handle sending him the box(es) of comfort in his time of need.
Monetary Donations

If you would like to donate money instead of items, you can send a donation to info@wishlistfoundation.ORG via PayPal (please mark it as a GIFT) with the title message “ATTN: Christopher Lee-Sye” (we can provide a tax receipt)
-or-
you can PayPal Chris directly at chrislee_sye@yahoo.com and make sure you mark it as a GIFT
Direct Shipping

If you want to send something via UPS or directly, you can send it to:
Outback
c/o Christopher Lee-Sye
4509 W. Poplar Street
Rogers, AR 72758
USA
Chris works at the Outback and they are accepting packages for him and delivering them to him and his family.
A message from Chris & his family:

“You guys are awesome…. Thank you for absolutely everything and that the continued love and support is truly amazing. Be proud to be a part of the amazing PJ community. This is truly overwhelming and I can’t express how much things like this helps us to move forward. xoxo”
Chris requests that if you do donate anything, please include your name/email because they would like to thank each one of you individually.
Additionally, you can donate to the Red Cross Appeal by texting “Joplin” to 864833 for a donation of $10, which will be added to your phone bill.


Please share with your friends :)

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 :)