Ribbons and Whatnot

I have obviously taken a very long vacation from posting.  As a short explanation, my husband decided to run for a local political seat earlier this year.  I locked up my personal Facebook page, the blog's Facebook page, and my blogs so there would be nothing that I said carelessly...like a human...that could be used against him.  He ran a very positive and honest campaign, which makes me very proud, but that did not stop others from choosing to do otherwise.  So I am exceedingly glad I took those precautions.  He was not chosen, but I had such a horrible taste in my mouth from the attacks, I literally had panic attacks when I thought about unlocking my security.

I have still opted to keep some security on the comments...forgive the flippancy...but "It's me, not you."

I spent 75% of my Childhood Cancer Awareness month worried for the health of someone I love...and wondering if I had breast cancer.  So I was not really in the mindset you have to be to revisit cancer.

I will be 40 in November, so I did my duty, spurred by several friends who are breast cancer survivors, and had my first mammogram.  Because I have had several bouts of mastitis while breastfeeding each of my kids, I fully expected dodgy mammogram results.  So I paid extra to have the 3D mammogram.  However, instead of the quick results they promised me, they didn't call me for almost a week and a half.  There are some results that "no news is good news"...stuff like this is less so, because it means it wasn't a quickie overview...so when I was called and told that I needed an ultrasound, I was already a smidge stressed.  However, I wasn't really worried, because I figured that they had found scar tissue from the infections.  I kind of blew it off.  But the nurse kept stressing that it wasn't "That kind of call back.  It's the kind that is no longer a diagnostic call back." to the point that I was genuinely strung out by the time I had the ultrasound scheduled.

And then, yesterday, I was informed that the spot was a cyst that was "The wrong color on the ultrasound." And that I needed to have an aspiration/needle biopsy. 

I typically have a "DON'T Google the symptoms." stance on things because you always have a tumor by the time you read all the hyperlink options.  But in this case, the nurses had gone to so much trouble to tell me how atypical this was, that I figured that the odds were bad.  Ironically, when I finally got the guts up to Google it, because, really, what's a worse WebMD outcome than cancer?  There were way more assurances that these come up cancer proportionately less...which led me to really question "Why all the medical cautioning?"  Which only left me nauseated.

This morning at about 8:00, they emptied the cyst, and it was benign and that there was no need for pathology.  So I am left with a hefty hospital bill, but a release to normal life...which looks way sparkley and brighter today.

BUT as I looked over at my friends who have fought this beast, because I wondered if I would join yet another club in the Awareness Month, I was struck at how the white washing of breast cancer is mainstream just like the glossing of childhood cancers.

And it really makes me mad.

Breast cancer awareness is not all pinks and cakes and 5Ks with balloons.  It's ugly, it's vicious, it's destructive to family life, general health, and it has long term impacts.  I know several survivors that have beat it, only to have it loop back and attack another system.  I hear all the funny games of what color bras you are wearing to bring "awareness", but it's not kosher to point out that even those who have survived and have something to put in their bras and had reconstructive surgeries have aggressive scarring and permanent damage and suffer long term effects.

It's not about the boobies, People, it's about saving lives.

Childhood cancer awareness is also not all about the beautiful, shiny bald heads on the St. Jude commercials.  It's not the beautifully written books/movies of Nicholas Sparks or John Green. 

It's about kids who have DIED.  Or those who have survived with long term losses, brain damage, and lost childhoods.  It is an ugly monster that steals what you take for granted.  It steals things that you simply don't "deserve because we live in the world we live in".  It destroys things that are hauntingly beautiful.  Things as basic as your family being together. It steals futures.

Childhood Cancer Awareness Month is always a kick in the teeth to know how resilient kids are, how their bodies fight like wild animals against cancer, but that the funding for new treatments for a cure is virtually non-existent.  It's about 4% of the cancer research allotment, and it stands to do far more good and offer more saved futures as a unit. 

For me, it doesn't matter how long it's been since Elise was on treatment.  I feel its impact regularly, but I don't despair in what was ravaged, I treasure that she was given a future.  And the kids that are still fighting don't stop when September is over.  If you ever want to pass on an over-priced coffee, there are lovely organizations that would love your dollars to make a difference for kids and their families.  Even if you missed the publicly prettied-up window.

I am posting 31 for 21 posts for Down syndrome this year on my personal Facebook page and this blog's Facebook page: https://www.facebook.com/Just-a-Little-Muchier-Muchness-146239852081726/timeline/.  At the end of the month, I'll collect them all up and post them in a single post on here.  So do like us and follow to check and see what hits me as important to share this month...I am always just as surprised as you.

P.s.  It's good to be back, I've missed our little chats.

Childhood Cancer Wrap Up

I was a little brutal this month.






Usually I tend to focus on Elise's journey with Cancer.  I dwell on her treatment, the people who blessed us, her miracle and the impact that it has had on all of us.
http://superdownsy.blogspot.com/2013/09/cancer-thoughts.html







Last year, I listed names.







This month, I shared photos of our friends that lost the battle. 







Lost.







These are people who are in my periphery of thoughts often.  At least once a month, usually more.  And not as a passing thought, but really dwelling on them.







I know their parents must have them in their periphery on a constant basis.







Children are the most resilient beings.  And not just in life, but medically.  They bounce back with truly awe-inspiring magnificence.  You can ask any medical professional, in any specialty.

If they had anywhere near the money spent on research that adults receive, I am sure that there would be breaking discoveries on a nearly constant basis.







Out of all the federal/public funding in cancer research, less than 4% is spent on children's cancers.  Out of ever $100, only $4 goes to kids.  That is paltry.  And that is ALL forms of children's cancers...tumors, leukemia, genetic forms, brain cancer...you name it...






You can google graphs, the survival rates have come up with increased funding.  They come up when they have people believe in them enough to say, we know you can find answers.  We will help you.  That's what your $5 says when you donate to St. Jude while you are Christmas shopping. When you send $10 to AFLAC or Cure Childhood Cancer, you are standing shoulder to shoulder against every parent's darkest fear...and you are fighting.  Earnestly.







Do our kids not deserve a fight that is armed with the latest information?  Do they not deserve weapons that work against this monster?







Would you go into battle with last year's information? 






And yet, pediatric cancer patients do, daily.







Fund them.  Find a chidlhood specific group, check on their financials, and donate.  If you gave like the goofy ALS ice bucket challenge, you could give children full lives.  And that was a social experiment whim.  Imagine if you engaged and fought with them?







They could go into adulthood, warriors.  They would be the ultimate survivors.  Their families wouldn't have to listen to the what-ifs in the back of their minds...they would know who they would turn out to be.  They would have the ultimate purpose: living life and impacting others.






My Elise is a survivor.  She won her battle with 10 patients on her protocol.  That means that it was BRAND NEW INFORMATION.  But that was also 10 years ago.  And I believe that is still the standard treatment protocol.  It's working, mind you.  We can say 10 years later, that she is still free from relapse or secondary cancers. 


We have another friend that won.  Her name is Ashlyn.  She is a tiny little thing with a soul of a Navy Seal.  She won.  Thanks to random Christmas donations.  Or people like me that have too long a list of those that Cancer took from their parents...and want it to lose, every single battle from now to eternity.


You can make that happen. 


Choose a reputable group.  St. Jude.  Cure Childhood Cancer.  Your local childhood cancer chapter.  Beat it down.  Send it your coffee money once a month to them.  I don't care how small.  If everybody did it half the year, or when they remembered, you'd outspend the government.  In the BEST WAY POSSIBLE!!!

Cancer Thoughts....

In previous years, I have addressed September as Childhood Cancer Awareness Month.  I have celebrated the fact that Elise is with us, and the people we have met along the way.  I still am thankful for my Elise having beat this monster disease.  And I would like to "reshare" some of those thoughts.

http://superdownsy.blogspot.com/2012/09/childhood-cancer-awareness-repost-1.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-series-1-repost.html

http://superdownsy.blogspot.com/2012/09/cancer-free-anniversary-and-repost.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-3-repost.html

http://superdownsy.blogspot.com/2012/09/why-cancer-can-be-sweet-4-repost.html

I have also, in person, shared how important all the fundraising is for Childhood Cancers, because the public funding and allotments are so stingy with Childhood Cancer  research and support.  Like, shamefully disproportionate:

The American Childhood Cancer Organization says "Cancer will be funded in 2009 at a level of approximately $5.6 Billion. In 2007, the NCI reported that the combined extramural and intramural funding for childhood cancer research was approximately $180 million. However, this estimate could be regarded as liberal as some of the associated research might not be perceived as directly benefiting childhood cancer. Other more conservative estimates, put childhood cancer research funding as low as $30 million annually."  And other research groups that focus on Childhood Cancer, estimate very similar numbers.

The bare bones Childhood Cancer statistics are here:
http://www.acco.org/information/aboutchildhoodcancer/childhoodcancerstatistics.aspx

and here:
http://www.theatlantic.com/health/archive/2013/01/our-disproportionate-focus-on-adult-over-pediatric-cancer-research/266684/

For me, I look back at the kids that I know personally that have been lost.
Hayley
Maddy
Annette
Jack
Catie
Will
Lana Beth
Daniel
Amanda
Madison
Jill

And the hard thing for me and, most especially, their parents, is: "If research had gotten decent funding, could they have had the One Thing that would have helped them beat it?"

As many people before me have said, people in the position to allocate funds answer to adults, not kids.  So you know how "awareness" helps?  Now you know to ask.  Now you know to do all the fundraising 5ks.  Now you can donate time, money, or toys.  Now you know that we need you.

Please research any group you choose to give to.  Make sure that they are transparent in the allocation of funds.  Make sure you hold them to accountability.

Personally, we were touched by Cure Childhood Cancer, here in Atlanta.  I know for a fact, that they were heavily financially involved in supporting one Elise's doctors' research.  I know that they are funding research in long-term effects of chemo and cancer treatment drugs and protocols at the group that has handled all of Elise's treatments and follow up medical involvement.  I am sure that they were also involved with the experimental treatment that Elise received and that now is the new treatment protocol for all kids with Down Syndrome who are diagnosed with AML here in Atlanta.

Cure Childhood Cancer, also provided Thursday Night Meals for families undergoing inpatient treatment.  We looked forward to each Thursday as a break from hospital food.  More than that, though, it was an emotional release from the oppression of the sameness, and they gave the knowledge that there was someone out there that cared and hadn't forgotten us...or gotten tired of our emotionally draining updates.

I have been impressed with their transparency and their commitment:
http://www.curechildhoodcancer.org/about-cure/

But the thing you need to know, is that even if a child fights and wins, it never really goes away.

Elise not only had to battle cancer, but she is dealing with increased mental impairment because of the very chemo that saved her life.  We know this, because nobody dodges this.  The most common side effect of any chemo that I have seen is the inability to organize and process thoughts like before, in varying degrees.  And in the face of every single IEP at school and every story of children with Down Syndrome who are successful and perform on par with typical peers, I wonder again how much Cancer took from her.  Because of the damage the chemo did to her body while killing the cancer cells, she also lost a year's worth of interventional therapy.  In all areas, Physical, Occupational, and Speech, because she was too tired to grow and progress.  And we are still seeing the loss.

Why families who have lost kids fight passionately, most people understand.  They miss their child, and want to honor their baby's memory to help other kids NOT lose.  The ever popular "F U Cancer" indicates just how unending the battle is. 

Those who have battled and made it?  We fight because we lost kids who we "playdated" in the halls during treatment.  We fight because we feel guilty to have won, with nothing more to recommend us than anybody else.  We fight because we know how brutal the path is.  We fight because we fight the long-term effects every single day.  We fight the heart damage, the mental impairment, the systems failures, the lung damage, the liver damage, the secondary cancers, and the chronic fear.

We fight, because it is never over.

Why Cancer Can Be Sweet #4 Repost

For my final post for Childhood Cancer Awareness, I would like to do a shout out for Medicine. And more importantly, those who make it magical.

I used to think medicine was a more exact science. You get sick, they make it better. Problem. Medicine. Healing. Voila.

In truth, that's not how it works.

Over the last 9 years, I have been up to my eyeballs in medicine. Whether I wanted to be or not. I had the pleasure of volunteering and shadowing in the medicine community throughout high school and college, but I did not fully appreciate what "science" really meant.

Science really only promises a clear problem solving pathway while searching for an answer. Wikipedia defines it: "(from Latin: scientia meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe."

TONS of medical break-throughs have come about by accident. Penicillin. Chemotherapy, itself, was a by-product of World War I's Mustard Gas. No Lie.

But the sweet part of cancer that I wanted to highlight are the doctors, nurses, and techs. Anybody can hand out miracles. Joe on the street can pass out drugs. The magnificence of the Oncology profession is that they aren't miracle workers. They will lose kids. They may not win every time. But they come back to work every day. Most of them with a smile and a hug for all those they care for. They constantly steep themselves in loss and illness, sadness and side effects; yet they constantly hand out hope. They are the heroes in the medical world, not because because Oncology is more important, but because they are the Foot Soldiers that unfailingly fight. Day after day, after day.

"Foot Soldiers are those specifically trained for the role of fighting on foot to engage the enemy face to face and have historically borne the brunt of the casualties of combat in wars." - Wikipedia

Is that not the most heroic??

The nurses and techs are the same way. They love their kids and make sure their little bodies are fighting valiantly. They support the parents, they smile, and share normalcy. They fight the cancer dragon face-to-face every day. And come back to fight another day.

The Medal of Honor is given for the "conspicuous gallantry and intrepidity at the risk of his or her life above and beyond the call of duty while engaged in an action against an enemy".

Perhaps they aren't risking their physical life to battle cancer, but I am sure that they face a significant emotional toll. If it was my call, I'd award every last one of those on the floor with Elise with the medical equivalent of the Medal of Honor.

And so, on the final day of Why Cancer is Sweet, I'd like to raise a cheer for Elise's Doctors, Fellows, Nurse Practitioners, Nurses, and Techs. Thank you for fighting with an indomitable spirit for my child's life. Thank you for weathering all the storms. Thank you for wielding the science as a weapon to produce a miracle. Thank you for bringing joy. Thank you for caring. Deeply. Over and over. Every time. Equally.

You are Protectors. Defenders. Warriors. Heroes.

Thank you.

Why Cancer Can Be Sweet #3 Repost

The third reason cancer can be sweet is the allowance to see people look past themselves. To give.

There is a lot of push these days for the government to step in and take care of those in need. I am not going to get into a lot of political discussion, but I will say, I think that short circuits people's desire to take care of others. People like to DO things for those in need, as evidenced by crisis situations...

When there is something REALLY not a part of the day to day, people feel helpless. The evidence of their humanity and frailty is truly visible. And most people will wrap those vulnerable with generosity and a closing of the ranks around them. To protect. It is a beautiful thing.

Cancer was sweet because I learned about these givers. I saw those who fed our bodies and our hearts. I saw those who gave us the time to run to the store. I saw those who would go on milk runs especially for us when Elise's ability to fight infection was nil and we couldn't go out. We were given financial help for the surprise expenses in gas and parking passes... I learned who my true friends were. I learned who loved others more than themselves. I learned who carries God's love to others. And I learned just how important that really is.

I received notes from churches who had prayer requests and took them seriously. We received notes from a particular church (not even ours!) who prayed for people every week and sent a post card or note telling you that you were prayed for. We received one to three cards every single week for 7 months. I know not one single person whose note told us that they had prayed for Elise or our family, but I am forever grateful for them. I received notes and emails from people telling me that my child would be wrapped in prayer. I have them all still.

I got personal phone calls from our pharmacy who worried when we were late to collect Elise's "home" medicines when she was still fighting infection and couldn't get released from the hospital yet. And you could actually hear their relief in their voices when they heard that everything was still okay.

I admit I received stilted phone calls from friends who were audibly uncomfortable with our not-perfect life...who never returned...but more often, I received phone calls from new and old friends that balanced between listening to the awful and not shying away and those giggled over our new somewhat funny situations. We would laugh about nurse practitioners who were crazy and the fact that we went to the library that day. And they managed to share just enough of their life that that they shared their normal, and didn't rub it in. I got "new" friends out of it. Nurses, other parents, and acquaintances that reached out to become true friends.

In a nutshell we got to Christ's body at work. Being hurting and vulnerable was truly worth it to see this miracle! We got to see HIM up close in this manner and He was beautiful!

Cancer-Free Anniversary and Repost Series #2

Yesterday was Elise's Cancer-Free Anniversary.  Eight Years ago, yesterday, they declared her to be The Victor.

To celebrate, we went to Scottish Rite for an ABR (a sedated hearing test).  Well, not really, but when you are trying to see specialists, they often have a tight schedule, and when they say you can see them, you say, "Thank you.  What time?"

So, we got up at dark-thirty, and threw ourselves into the car and raced down to the hospital.  No food or water after midnight makes for a snarly Elise...so I usually decline to warn her about that part.  But surprisingly, she was fairly okay with that this time, she put down lots of requests for after...goldfish, pizza, and Chick-fil-a...all of which, I made good on...as always...

I gave her a dolly for celebration, and told her it's name was "Molly" because ALL of her dolls are named "Isa", and it gets confusing...after we wrestled her down and poured half the Versed on her and down her throat, she got giggley and told me the doll's name was "Pizza"...which she remembered after the entire thing was over...and she is still insisting that her name is "Baby Pizza"...

 

I tried to sweet talk the Audiologist into letting me go back and watch the testing...but, sadly she said, "no".  I had to help them put in the IV for the anesthesia, fight her onto the hospital gurney, and smell Their Soap...you'd think they would reward me for that...with cakes and a parade...at least letting me watch the fun part seems reasonably fair...

 

She passed the hearing test with flying colors, which was great!  Elise + hearing aids = ulcers just thinking about it.  But she told me that one of the Tubes, that were placed in MARCH, appears to have already fallen out (if it hasn't, it is in the process).  Which led to the discussion of what NUMBER set (6!! in 5 years) this is...and she said that the scarring of the ear tubes may ultimately lead to hearing loss, so be sure to have hearing tests regularly.   Yet another case of "damned if you do, damned if you don't"....She can't hear without the tubes relieving the fluid, but the tubes will probably cause hearing loss..."You can't win, for losing."...also comes to mind.

 

However, I return to the joy of the day...she is HERE.  And so we had real pizza for supper and chased it with Anniversary spiced cake.

 

 

 

And we snuggled her with abandon!!!  Which she enjoys as much as we do!!

 

 

I'll leave you with my thoughts from last year: 

 

Why Cancer Can Be Sweet #2

 

"Today's post gets a little sticky...Not everyone gets to celebrate this aspect of cancer and I understand that. But those that do, cling to it. It is far more celebratory than birthdays and graduations. Everything is dated BC/AC (Before Cancer/After Cancer) and, often, even those that lost someone to cancer cheer when somebody fought and won, even as they mourn that it wasn't their beloved...and so I am choosing to share today our miracles.

One (possible) sweet aspect of cancer is the pathway of miracles that network together for a "win". I can promise you that almost everyone I have ever spoken to has had a series of take-your-breath-away-miracles stories and not just a chemo-took-care-of-it story... I'm dead serious. God uses chemo, to be sure, to save some, but he always makes sure that his thumb-print is squarely on it. In the diagnosis, the protocol, the timing...something. I don't care who you are, it's all HIM, baby!!

Elise had Open Heart Surgery in February of 2003. (I know I've told this story before, but it is intrinsic to her pathway of miracles!) Because of the surgery, she was put on a diuretic. She had a couple of runny pants and got very quickly dehydrated and turned blue. She was rushed to the emergency room. That day, we learned that she had virtually no platelets. The platelets are the clotting agents in the blood. It was the first indicator for cancer. She was less than 5 months old and was in a pre-cancerous condition. It was coming, we just didn't know when.

We watched it for a full year. She was diagnosed with the pre-cancerous conditon March 6, 2003. She was diagnosed with AML leukemia February 26, 2004. She never "presented" in her bone marrow. She presented in the form of "liquid tumors" in her sinuses. We were told that the tumors were mere weeks away from her optic nerve. EVEN with us watching it and getting bloodwork every few weeks and bone marrow draws every couple of months!!!! If she had not had the heart problems and the corresponding medication, we would not have had the blue baby incident. If we had not had the blue baby incident, we would not have known to watch for the cancer. If we had not been watching the cancer, she probably would have lost her eyesight and her cancer certainly would have been a lot further along, compromising the likelihood of survival. (Also, interestingly, the sinuses can regenerate, the optic nerve does not.)

The chemo protocol that we chose to put Elise on, was not a "standard" protocol, it was still very much in it's early stages. If I had not had a year to research our chemo options, to read the studies and medical discourses on the various options on Down Syndrome and AML; I don't know that we would have chosen the new protocol. I really don't. The standard protocol was quite successful, and there had only been about 10-15 people on the one we chose. The new one had had 100% survival, but still that's not enough cases to relieve any one's mind about an "experimental" treatment, especially when you don't even have time to tell you how successful it had actually been, or the side-effects...usually, we wait and do the experimental treatments when the first choice fails. But because of our INSANELY worrisome year, I had time to read medical discourses and theses on the subject and what were the combinations of the most successful protocols. And I am not medical. I just had the time to educate myself.

We even had a few miracles fall into place for our son. At 5, we had to send him to "Grandparent Camp". The unfortunate aspect of Elise being so tiny and fragile, was that her chemo was ALL in patient. So rather than make Gabriel live at the hospital and be locked down from a real childhood, he went to live with my parents and my in-laws, on rotation. My mother was a school diagnostician and got to pick the school, the classroom, and the teacher that Gabriel got. He was placed in an inclusion classroom, and because he was entering Kindergarten in MARCH, he not only had the mediation to not get completely lost, but he was able to get caught up, completely. And so, he thrived and graduated Kindergarten able to move to 1st grade. He got a somewhat normal life, playing with friends and making normal memories, and bonding with his grandparents in a manner more...MORE! than anyone else gets to!! Such a blessing! We had to trust heavily that God would fill in the holes in Gabriel's life...and we spent a LOT of time on the phone listening to all his normal stories...and being blessed by his joy...and of course all his effusive and happy visits!!

Also, in waiting, we were able to move to the Atlanta area and be blessed with Children's Healthcare of Atlanta AFLAC Cancer Center which is ranked 12th in the nation for their cancer program according to US News and World Report. Which is why we even got the option of the new protocol....kinda cool, huh?

SO....today is Elise's Off Therapy Anniversary. She has been officially cancer-free for 7 years, TODAY. I still get a kick that she managed to time it in Childhood Cancer Awareness Month. (And be born in Down Syndrome Awareness Month and have her Open Heart Surgery in Heart Health Awareness Month...but those are other stories...) But this is the day I celebrate in my heart with more joy than her birthday at the end of October...she was given back to us again, to celebrate and treasure. We are indeed blessed. The network of miracles that God made, shines in her path and gives light to the dark moments...If God did THAT, you know he can handle anything, with flair and perfect timing!"

Why Cancer Can Be Sweet Series #1 Repost

This was from last year's Cancer series:  Why Cancer Can Be Sweet Series #1

I am going to go for the obvious first.

Life gets boiled down to purity.

You thought your child's special needs broke everything down to a clear understanding? Healthy is good. Eventually is a fine timeline. Love is important. Perfect is negotiable.

Enter cancer. I guarantee that what is important is broken down to an even more primitive importance. You are alive. It's a good day. Your kids are alive. It is a fabulous day. Right now is all you need to worry about. Your family is together, your day is perfect.

Nothing like death peeking over your child's shoulder at you to tweak that perspective even more.

In light of the numbers we were given on that dark day in February of 2004...we went from "Aww...Our child has Downs, what will her life be like?" to "Our child has Downs, fantastic!!! She has a fighting chance!!!"

Our child's survival was never a given. Cancer is not an adversary that you take lightly. It is the ultimate serial killer. When your child is less than 20 pounds and still wearing footie jammies, they don't look like they could take Elmo in a fight, much less the big "C".

Elise had been battling thrombocytopenia (low platelets, a pre-cancerous condition) for a full year prior to her diagnosis. She was a measly little 13 lbs at her diagnosis, at the ripe age of not yet 2. She was not walking or even cruising furniture. She didn't have the strength to do anything but survive. She was not one who you would put good odds on.

In the months during her inpatient treatment, we watched other families suffer and struggle...we watched tiny children lose their battles. We watched teenagers lose their battles... After her treatment concluded, we watched friends relapse and lose their battles after they thought it was won. We suffered from survivor's guilt. Oh, yes. And it is dark...darker than you'd expect... You know that your awesomeness was not what tipped the scales of your baby's survival. If amazing parenting was going to get immunity, you know it shouldn't have been you. In our case, we know that our child will not be the person that grows up to be the scientist that will cure cancer....so they are not being saved to meet their destiny "super-ness". You wonder if God made a mistake and took the wrong kid. I'll save you the rest of the rabbit trails that my brain chased in the dark of night...

Ultimately, I came to the realization that life is a gift. Lest you think that is trite, hear this: You do not deserve a tomorrow. It is not a given. It is not a right. It is a celebratory excuse just that you woke up today.

The separation between life and death becomes fuzzy. Tomorrow and heaven are pretty much the same thing...after seeing friends lose their babies to cancer, the separation of their life and our lives is pretty much a piddly veil, it is not as big a chasm as you think...not really. It doesn't take much to slip behind that curtain....life is fragile. It will not last. And you have absolutely no security that you or anyone you love will die peacefully in their beds at an old age after a full life. There will be no point in their life that those who lose their beloved will "get over the loss". They will always wonder what their life would have been like if their child had survived...the loss will always be there, even in their joys, in the periphery...

In the face of cancer...and loss in whatever form...Heaven becomes more than a nice place to hang out, with pretty castles and nice stuff. It becomes the only place that you know all your dreams will come true. It is the only place without loss. It becomes the yearning of your heart. Heaven becomes...well...HEAVEN.

Cancer casts life in the right light. The honest light, the bright and all-showing, bald sun or fluorescent lighting...there is no delusion...You do not deserve tomorrow. You must celebrate the boring, the annoying, the exhausting...because it WAS. And as such was a gift. You should live today because it is an opportunity. Today is the time that you must take to live the fullest because it may be the last. There are no promises.

Sometimes I feel like pulling a Paul Revere, and racing through the streets at the dark of night shouting "Live!!! Celebrate!! Find Joy! Live with passion!! LOVE!!! You don't understand how important it is!!!" I'm feeling a bit Our Town-y, but that play is poignant because it speaks the truth. Life is fleeting, and it is pretty great, even the boring stuff.

"We can only be said to be alive in those moments when our hearts are conscious of our treasures."
— Thornton Wilder

Childhood Cancer Awareness: Repost #1

I am not feeling brilliant yet this month...and so I've decided to repost my posts about Cancer.

Elise's treatments feel so long ago...and, yet, they feel like they are only just past the corner of my eye...

Here is a repost of the short, short version of Elise's path that I did as a guest post over at With a Little Moxie.

http://superdownsy.blogspot.com/2012/04/meriahs-guest-post-for-cancer.html

"Some days my daughter's bout with cancer seems like a bad dream, something that happened so far in the past, I question if it was real. Some days, I will get a tightening across my chest and panic will raise it's ugly head when I see her have a lethargic day, and I can barely keep myself sane and separated from that time in our lives.

Elise is 9 years old. She has been "cancer free" for 7 of those. This is a fact that colored so much of her babyhood that it's impact is still being seen. She is an inspiration for those starting the treatment path. She is a touchstone of miracles for our friends. She is a painful reminder to our friends that lost babies who were on treatment at the same time.

When Elise was born, we were completely blindsided by the fact that she had Down Syndrome. I had passed the blood screenings, and I was only 26 years old. In retrospect, they kept bumping my due date back because she was so tiny and they went "searching" for her tiny little finger during my second (of only 2!) ultra sound. All the "little" red flags were completely blown off...and it really should have been looked at closer...but I think it was better that we didn't know. My husband was in graduate school, I was teaching 7th grade, and we had a gorgeous 4 year old boy...to have known would have been such a huge stress and worry for us...we got to enjoy my pregnancy and not panic wondering "how we'd do it".

They also missed that her heart had massive holes in it. She was in cardiac failure in less than 3 months after she was born. She had her heart repaired at 3 and 1/2 months, because we simply ran out of time. Post surgery she was put on a diuretic to keep fluid from collecting around her heart. But after an unfortunate day when she had a couple of runny diapers, she turned got dehydrated and turned blue. She got a ride the the hospital in an ambulance. It wasn't just a mommy panic moment.

 

They did a blood battery just to make sure there wasn't something else going on and the results came back telling us that she had almost no platelets. They are the clotting agent of the blood, and the most fragile part of your blood. At 4 months old, she was a little old for "transient leukemia", but they were willing to watch and wait, because she had minimal blasts in her bone marrow sample.

We took Elise in monthly for a blood draw and a bone marrow aspiration every 2. She had quite a few platelet transfusions. But the blasts continued to hold steady, and so we continued to watch. During which time, my husband graduated from school; he got a real, paying job; and we moved from Tennessee to Georgia. (Children's Healthcare of Atlanta ranked very high among children's hospitals and had a great reputation in cardiology and cancer treatment. So it factored very high in our decision-making process.)

4 months after we moved to Georgia, Elise got a scan for what we thought was an eye infection. It wasn't. Even though she still had minimal blasts, somehow over the last year, the cancer had collected in the form "liquid tumors" in her sinuses and behind her eye. The doctor told us that practically, the tumor was about 2 weeks away from her optic nerve. It was primarily in her sinuses, and miraculously, your sinuses can regenerate. With that kind of information, we were incredibly thankful that we had been watching this for a year. If we had not been watching it carefully from month to month, our first clue to her liquid tumors would have been her loss of vision, which would have been irreversible.

 

And so we started a chemo program that was still in it's experimental stages. I had had the time over the last year to read up and research on chemo and Down Syndrome. Which, frankly, was primarily online medical journals. There was 21 pages in the Medical & Surgical Care for Children with Down Syndrome: A Guide for Parents book. And a page by Len Leshin, nets a paragraph. And in the last 7 years, I am not seeing much more information out there. As a matter of fact, I would say that the best collection of information for any parent faced with a leukemia diagnosis is other parents.

The fact remains, however, is that even though kids with Down Syndrome tend to be more fragile and more susceptible to cancer, the same "fragile" cells tend to respond much better to much less chemo. The protocol that we chose had 99% survival rate. The numbers that our doctor gave us at the beginning of her treatment was that AML leukemia in typical kids had a 30% survival rate at 5 years after treatment to 98% survival rate at 5 years if the child had Down Syndrome. In less than a year and a half, we went from "Oh, no. Our child has Down Syndrome, what will her future be like?" to "YES!!! Our child has Down Syndrome, she HAS a future!!"

 

Elise's treatment lasted from February 2004 to September of 2004. It was all in-patient. She would receive treatment for a few days, stay for a week while we waited for her blood counts (platelets, neutrophils, and whites) to come back, and then we would go home, in lock-down. And we would repeat. The final month of treatment, her counts were so suppressed, that she had to stay at the hospital for a full month. During this time, we farmed our beloved son out to our parents. He enjoyed going to "grandparent camp" but we missed him terribly. He would come home when Elise was stable enough, but that often resulted in the weekend before the next round of chemo. We talked to him every night, and staying with our parents gave him a measure of normalcy that we could never have given him during that time. I often reflect that I do not know what we would have done if our parents had not so graciously stepped up and gave him the gift of "normal". I know it would have been desperately hard on all of us.

 

My biggest worry for Elise is relapse. You are never free. The reason that figures big in my nightmares is that for all that kids with Down Syndrome respond well to lighter chemo, they have a hard time with relapse. As in, the numbers of relapse survivors bottom out...they were in the single percentage points the one time I was able to find them. The numbers are similar if they have to go to a Bone Marrow Transplant. Their bodies really struggle with the chemo required to get them to zero for the transplant prep. This is where research will be our biggest weaponry. Our kids are very susceptible to cancers, and in cases like Elise where the cancer sneaks in the back door, the probability of "Round One" working without fail is slim...we need to have access to the "Big Guns", too.

 

Post Remission, there are several dates that figure in pretty high for relapse. One year, two years, five years, and puberty. I am thrilled to mark those dates off. Elise has celebrated One, Two, and Five years out. We are on the cusp of puberty, and I hope to celebrate that too.

Every year, I celebrate her remission date. September 10. We have her favorite food and I get her a small present. We watch her favorite movie and we snuggle her with abandon. Some years we even have cake, the "mark" years. She doesn't have any idea why, her siblings have no idea why, but I cannot let the day pass without a party. It is the day that we were given her back...and the beginning of "mostly normal" in our lives. She finally had the strength to attempt walking; the energy to start talking, signing, and communicating; the vitality to touch more than just her family with the Muchness that is HER.

 

If your child presents with any symptoms: petichae, lethargy, bruising, constant illness; do not hesitate to ask for a Complete Blood Count (or a CBC), it will take almost no time and the peace of mind is priceless. If the unthinkable happens, contact your local Down Syndrome Association or online/Facebook support groups and look for parent of kids who are survivors. If your child DID survive, make sure that that fact is out there!! The importance of support and information cannot be understated. And in our position, it may be the only useful information out there.

"The Club" of families who celebrate their children with Down Syndrome is large and loving. "The Club" of Survivors with Down Syndrome is smaller, but even more important. Don't hesitate to reach out! And ask and hug and educate!!"

Why Cancer Can Be Sweet - #4 Medical Science and the Foot Soldiers

For my final post for Childhood Cancer Awareness, I would like to do a shout out for Medicine. And more importantly, those who make it magical.

I used to think medicine was a more exact science. You get sick, they make it better. Problem. Medicine. Healing. Voila.

In truth, that's not how it works.

Over the last 9 years, I have been up to my eyeballs in medicine. Whether I wanted to be or not. I had the pleasure of volunteering and shadowing in the medicine community throughout high school and college, but I did not fully appreciate what "science" really meant.

Science really only promises a clear problem solving pathway while searching for an answer. Wikipedia defines it: "(from Latin: scientia meaning "knowledge") is a systematic enterprise that builds and organizes knowledge in the form of testable explanations and predictions about the universe."

TONS of medical break-throughs have come about by accident. Penicillin. Chemotherapy, itself, was a by-product of World War I's Mustard Gas. No Lie.

But the sweet part of cancer that I wanted to highlight are the doctors, nurses, and techs. Anybody can hand out miracles. Joe on the street can pass out drugs. The magnificence of the Oncology profession is that they aren't miracle workers. They will lose kids. They may not win every time. But they come back to work every day. Most of them with a smile and a hug for all those they care for. They constantly steep themselves in loss and illness, sadness and side effects; yet they constantly hand out hope. They are the heroes in the medical world, not because because Oncology is more important, but because they are the Foot Soldiers that unfailingly fight. Day after day, after day.

"Foot Soldiers are those specifically trained for the role of fighting on foot to engage the enemy face to face and have historically borne the brunt of the casualties of combat in wars." - Wikipedia

Is that not the most heroic??

The nurses and techs are the same way. They love their kids and make sure their little bodies are fighting valiantly. They support the parents, they smile, and share normalcy. They fight the cancer dragon face-to-face every day. And come back to fight another day.

The Medal of Honor is given for the "conspicuous gallantry and intrepidity at the risk of his or her life above and beyond the call of duty while engaged in an action against an enemy".

Perhaps they aren't risking their physical life to battle cancer, but I am sure that they face a significant emotional toll. If it was my call, I'd award every last one of those on the floor with Elise with the medical equivalent of the Medal of Honor.

And so, on the final day of Why Cancer is Sweet, I'd like to raise a cheer for Elise's Doctors, Fellows, Nurse Practitioners, Nurses, and Techs. Thank you for fighting with an indomitable spirit for my child's life. Thank you for weathering all the storms. Thank you for wielding the science as a weapon to produce a miracle. Thank you for bringing joy. Thank you for caring. Deeply. Over and over. Every time. Equally.

You are Protectors. Defenders. Warriors. Heroes.

Thank you.

Why Cancer Can Be Sweet #3 - Beautiful Feet

The third reason cancer can be sweet is the allowance to see people look past themselves. To give.

There is a lot of push these days for the government to step in and take care of those in need. I am not going to get into a lot of political discussion, but I will say, I think that short circuits people's desire to take care of others. People like to DO things for those in need, as evidenced by crisis situations...

When there is something REALLY not a part of the day to day, people feel helpless. The evidence of their humanity and frailty is truly visible. And most people will wrap those vulnerable with generosity and a closing of the ranks around them. To protect. It is a beautiful thing.

Cancer was sweet because I learned about these givers. I saw those who fed our bodies and our hearts. I saw those who gave us the time to run to the store. I saw those who would go on milk runs especially for us when Elise's ability to fight infection was nil and we couldn't go out. We were given financial help for the surprise expenses in gas and parking passes... I learned who my true friends were. I learned who loved others more than themselves. I learned who carries God's love to others. And I learned just how important that really is.

I received notes from churches who had prayer requests and took them seriously. We received notes from a particular church (not even ours!) who prayed for people every week and sent a post card or note telling you that you were prayed for. We received one to three cards every single week for 7 months. I know not one single person whose note told us that they had prayed for Elise or our family, but I am forever grateful for them. I received notes and emails from people telling me that my child would be wrapped in prayer. I have them all still.

I got personal phone calls from our pharmacy who worried when we were late to collect Elise's "home" medicines when she was still fighting infection and couldn't get released from the hospital yet. And you could actually hear their relief in their voices when they heard that everything was still okay.

I admit I received stilted phone calls from friends who were audibly uncomfortable with our not-perfect life...who never returned...but more often, I received phone calls from new and old friends that balanced between listening to the awful and not shying away and those giggled over our new somewhat funny situations. We would laugh about nurse practitioners who were crazy and the fact that we went to the library that day. And they managed to share just enough of their life that that they shared their normal, and didn't rub it in. I got "new" friends out of it. Nurses, other parents, and acquaintances that reached out to become true friends.

In a nutshell we got to Christ's body at work. Being hurting and vulnerable was truly worth it to see this miracle! We got to see HIM up close in this manner and He was beautiful!

Why Cancer Can Be Sweet - #2 and Elise's Off Therapy Anniversary

Today's post gets a little sticky...Not everyone gets to celebrate this aspect of cancer and I understand that. But those that do, cling to it. It is far more celebratory than birthdays and graduations. Everything is dated BC/AC (Before Cancer/After Cancer) and, often, even those that lost someone to cancer cheer when somebody fought and won, even as they mourn that it wasn't their beloved...and so I am choosing to share today our miracles.

One (possible) sweet aspect of cancer is the pathway of miracles that network together for a "win". I can promise you that almost everyone I have ever spoken to has had a series of take-your-breath-away-miracles stories and not just a chemo-took-care-of-it story... I'm dead serious. God uses chemo, to be sure, to save some, but he always makes sure that his thumb-print is squarely on it. In the diagnosis, the protocol, the timing...something. I don't care who you are, it's all HIM, baby!!

Elise had Open Heart Surgery in February of 2003. (I know I've told this story before, but it is intrinsic to her pathway of miracles!) Because of the surgery, she was put on a diuretic. She had a couple of runny pants and got very quickly dehydrated and turned blue. She was rushed to the emergency room. That day, we learned that she had virtually no platelets. The platelets are the clotting agents in the blood. It was the first indicator for cancer. She was less than 5 months old and was in a pre-cancerous condition. It was coming, we just didn't know when.

We watched it for a full year. She was diagnosed with the pre-cancerous conditon March 6, 2003. She was diagnosed with AML leukemia February 26, 2004. She never "presented" in her bone marrow. She presented in the form of "liquid tumors" in her sinuses. We were told that the tumors were mere weeks away from her optic nerve. EVEN with us watching it and getting bloodwork every few weeks and bone marrow draws every couple of months!!!! If she had not had the heart problems and the corresponding medication, we would not have had the blue baby incident. If we had not had the blue baby incident, we would not have known to watch for the cancer. If we had not been watching the cancer, she probably would have lost her eyesight and her cancer certainly would have been a lot further along, compromising the likelihood of survival. (Also, interestingly, the sinuses can regenerate, the optic nerve does not.)

The chemo protocol that we chose to put Elise on, was not a "standard" protocol, it was still very much in it's early stages. If I had not had a year to research our chemo options, to read the studies and medical discourses on the various options on Down Syndrome and AML; I don't know that we would have chosen the new protocol. I really don't. The standard protocol was quite successful, and there had only been about 10-15 people on the one we chose. The new one had had 100% survival, but still that's not enough cases to relieve any one's mind about an "experimental" treatment, especially when you don't even have time to tell you how successful it had actually been, or the side-effects...usually, we wait and do the experimental treatments when the first choice fails. But because of our INSANELY worrisome year, I had time to read medical discourses and theses on the subject and what were the combinations of the most successful protocols. And I am not medical. I just had the time to educate myself.

We even had a few miracles fall into place for our son. At 5, we had to send him to "Grandparent Camp". The unfortunate aspect of Elise being so tiny and fragile, was that her chemo was ALL in patient. So rather than make Gabriel live at the hospital and be locked down from a real childhood, he went to live with my parents and my in-laws, on rotation. My mother was a school diagnostician and got to pick the school, the classroom, and the teacher that Gabriel got. He was placed in an inclusion classroom, and because he was entering Kindergarten in MARCH, he not only had the mediation to not get completely lost, but he was able to get caught up, completely. And so, he thrived and graduated Kindergarten able to move to 1st grade. He got a somewhat normal life, playing with friends and making normal memories, and bonding with his grandparents in a manner more...MORE! than anyone else gets to!! Such a blessing! We had to trust heavily that God would fill in the holes in Gabriel's life...and we spent a LOT of time on the phone listening to all his normal stories...and being blessed by his joy...and of course all his effusive and happy visits!!

Also, in waiting, we were able to move to the Atlanta area and be blessed with Children's Healthcare of Atlanta AFLAC Cancer Center which is ranked 12th in the nation for their cancer program according to US News and World Report. Which is why we even got the option of the new protocol....kinda cool, huh?

SO....today is Elise's Off Therapy Anniversary. She has been officially cancer-free for 7 years, TODAY. I still get a kick that she managed to time it in Childhood Cancer Awareness Month. (And be born in Down Syndrome Awareness Month and have her Open Heart Surgery in Heart Health Awareness Month...but those are other stories...) But this is the day I celebrate in my heart with more joy than her birthday at the end of October...she was given back to us again, to celebrate and treasure. We are indeed blessed. The network of miracles that God made, shines in her path and gives light to the dark moments...If God did THAT, you know he can handle anything, with flair and perfect timing!


Happy No-Cancer-Day, Leesie!!!! :)

Why Cancer Can Be Sweet #1

I am going to go for the obvious first.

Life gets boiled down to purity.

You thought your child's special needs broke everything down to a clear understanding? Healthy is good. Eventually is a fine timeline. Love is important. Perfect is negotiable.

Enter cancer. I guarantee that what is important is broken down to an even more primitive importance. You are alive. It's a good day. Your kids are alive. It is a fabulous day. Right now is all you need to worry about. Your family is together, your day is perfect.

Nothing like death peeking over your child's shoulder at you to tweak that perspective even more.

In light of the numbers we were given on that dark day in February of 2004...we went from "Aww...Our child has Downs, what will her life be like?" to "Our child has Downs, fantastic!!! She has a fighting chance!!!"

Our child's survival was never a given. Cancer is not an adversary that you take lightly. It is the ultimate serial killer. When your child is less than 20 pounds and still wearing footie jammies, they don't look like they could take Elmo in a fight, much less the big "C".

Elise had been battling thrombocytopenia (low platelets, a pre-cancerous condition) for a full year prior to her diagnosis. She was a measly little 13 lbs at her diagnosis, at the ripe age of not yet 2. She was not walking or even cruising furniture. She didn't have the strength to do anything but survive. She was not one who you would put good odds on.

In the months during her inpatient treatment, we watched other families suffer and struggle...we watched tiny children lose their battles. We watched teenagers lose their battles... After her treatment concluded, we watched friends relapse and lose their battles after they thought it was won. We suffered from survivor's guilt. Oh, yes. And it is dark...darker than you'd expect... You know that your awesomeness was not what tipped the scales of your baby's survival. If amazing parenting was going to get immunity, you know it shouldn't have been you. In our case, we know that our child will not be the person that grows up to be the scientist that will cure cancer....so they are not being saved to meet their destiny "super-ness". You wonder if God made a mistake and took the wrong kid. I'll save you the rest of the rabbit trails that my brain chased in the dark of night...

Ultimately, I came to the realization that life is a gift. Lest you think that is trite, hear this: You do not deserve a tomorrow. It is not a given. It is not a right. It is a celebratory excuse just that you woke up today.

The separation between life and death becomes fuzzy. Tomorrow and heaven are pretty much the same thing...after seeing friends lose their babies to cancer, the separation of their life and our lives is pretty much a piddly veil, it is not as big a chasm as you think...not really. It doesn't take much to slip behind that curtain....life is fragile. It will not last. And you have absolutely no security that you or anyone you love will die peacefully in their beds at an old age after a full life. There will be no point in their life that those who lose their beloved will "get over the loss". They will always wonder what their life would have been like if their child had survived...the loss will always be there, even in their joys, in the periphery...

In the face of cancer...and loss in whatever form...Heaven becomes more than a nice place to hang out, with pretty castles and nice stuff. It becomes the only place that you know all your dreams will come true. It is the only place without loss. It becomes the yearning of your heart. Heaven becomes...well...HEAVEN.

Cancer casts life in the right light. The honest light, the bright and all-showing, bald sun or fluorescent lighting...there is no delusion...You do not deserve tomorrow. You must celebrate the boring, the annoying, the exhausting...because it WAS. And as such was a gift. You should live today because it is an opportunity. Today is the time that you must take to live the fullest because it may be the last. There are no promises.

Sometimes I feel like pulling a Paul Revere, and racing through the streets at the dark of night shouting "Live!!! Celebrate!! Find Joy! Live with passion!! LOVE!!! You don't understand how important it is!!!" I'm feeling a bit Our Town-y, but that play is poignant because it speaks the truth. Life is fleeting, and it is pretty great, even the boring stuff.

"We can only be said to be alive in those moments when our hearts are conscious of our treasures."
— Thornton Wilder