Thursday, September 29, 2011

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.

Shiney New Name

"You're not the same as you were before," he said. You were much more... muchier... you've lost your muchness," he finished, nodding as if that made perfect sense.
"My muchness?"
He crouched and poked her in the stomach with his finger. "In there," he said. "Something's missing."

-Tim Burton's "Alice in Wonderland"

I am usually a book person, not a movie person...I mean, don't get me wrong, I love a good movie, but usually a book trumps the movie. This time, I feel that, while different, this movie is powerful. Maybe even better than the book.

I read "Alice in Wonderland" by Lewis Carroll twice to confirm if this quote was in the book, as I got conflicting information on the Internet. I can fairly confidently assert, this interchange was not Lewis Carroll's.

But it is brilliant.

As I mentioned, I am changing the name of this blog, not because I am ashamed of my original blog name, but because of the ugliness it can be associated with, and I don't want to hurt by default.

So, on to the new name...Um, what's with that mouthful of nonsense words?

"Muchier Muchness", while nonsensical, shares the "MORE" with which you live your life.

Elise may have an extra chromosome and the deficits that it brings, but she brings to our lives (and every life she touches!) a magnitude of joy, courage, and passion that cannot be put into everyday words. She has "Muchness" in spades. She never holds back from insecurity, she never worries about what others think, she always shares her joy, and always loves deeply. She spills into others' lives and bubbles through their pre-conceived ideas, changing and improving their lives. Her joy permeates your heart and makes your soul grow.

Elise, unlike Alice in that moment, knows who she is. Elise is confident in her muchness. And she is willing to share.

Saturday, September 24, 2011

Linkity Split Day

Gorgeous Truth!! LOVED this research!!

Break your heart...Pray for this boy!!

My friend, Shonda Caines, is applying for a mini grant. Please do her a favor and vote for her. It only takes a few seconds and you only get to vote once!! Totally painless!

This week is Mitochondrial Disease Awareness Week, I'm a little late, as I was away from my computer this week....but please educate yourself on Mito...This is for Elise's very best friend, Megan...and all those fighting this brutal one!!

I hate the loose morals of Glee, but have LOVED Becky!!!

Good one!

Friday, September 23, 2011

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!

Tuesday, September 13, 2011

Thanksgiving Project - 2011

Oh, yes. I know I'm jumping the gun. But I figure I am doing it for more thoughtful reasons than Target and Kroger...

I would LOVE to get as many guest bloggers as I can for November again this year...keeping the theme: Thankful That We Are Not Alone!

You can volunteer and get "assigned" a topic, you can proposition me for your idea, or you can send me a ready written post and I will try and squeeze everybody in!! Some of you can also count on me banging on your email door begging you to come back on!!!

Why on EARTH am I asking you in SEPTEMBER?? So you have time to write it, piddle, tweak it, and get it to me BEFORE you lose your mind in the holiday craziness!! I don't want to be another stressor, but I really loved having you all on!! PRETTY PLEASE contact me at if you are interested AT ALL!!! And, hopefully this goes without saying, you can be wrestling any special need, it does NOT have to be Downs...Nor can we have too many parents writing about their Lovey with line up and let the writing begin!!!!! And it's not too late unless it's December 1st to submit... :) Then I'll use it for some other project or just post you as a guest!

Peek HERE if you'd like to see last year's Rock Star Guests!!!

What is in a name...

The name of this blog will be changing in the next few weeks...pretty much as soon as I can sweet talk my techie friend into making me a new banner.....

I told you before why I named my blog what I did...and I still stand by it...BUT...things are changing...

Let me chat a little business with you. When we used the term "Downsy" we used it to put life into perspective for ourselves...and we had not heard it used negatively. Not once in 8 years. In the last year I have heard it used DESPICABLY...a lot...tear your heart out ugly....and so, frankly, I don't want to be associated with that kind of hate.

I am being blocked by people who like what I say, but are hurt by my title...and that was certainly not my intent.

My intent was to make it just irreverent enough that people would feel comfortable asking questions. I am not getting questions. I am not getting ignorant traffic, like I had know, folks who didn't know anyone with special needs that wanted answers....

And so I am hurting and not helping. I want to be reaching out with my stories...I want to be helping heal those still fighting...

And so I will be re-naming my blog...I have 2 ideas in contention...and will unveil it soon. I just didn't want you wondering and surprised when it happens...

My URL will remain the same, so all my links will still stand, only my title will change...

Thanks so much!!

Saturday, September 10, 2011

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? 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!!!! :)

Monday, September 5, 2011

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 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 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

Sunday, September 4, 2011

Sensory Advice - #1

Last night this was my status on Facebook: "Elise just went bonkity-bonkers at Ted's Montana Grill over the powdered soap, complete with gags and retching.... methinks we need to start packing our own hand sanitizer..."

I've mentioned that Elise has sensory issues, definitely sensory defensive, probably full-blown Sensory Processing Disorder (SPD)...Certainly on the "spectrum", but we don't really know "how deeply". It comes up in weird ways, sometimes like last night, she's tired or sick and something that bothers her usually, sends her right on over the edge. Sometimes, the day to day exhausts her and flips her out at too much "MUCH" at school translates to EVERYTHING at home is too much. Sometimes, she acts out. Sometimes, she sucks her thumb, til you are afraid it may fall off from the "gusto". Sometimes, we all get "pet", she strokes our faces, hair, eyebrows, eyelashes, and hands til you have no concept where you leave off and where she begins. You do not get any personal space. At All. Sometimes, she drowns her sorrows in the 10 millionth showing of her favorite movie, the repetition and isolation from the real world helps. Sometimes, a combination of the aforementioned list is mixed together...

I have a friend that has a child that is struggling with getting "TOO MUCH-ed" at school. He is a normal-sized 5 year old, who ends up needing to be worn in a sling, by his very petite mother, after a long day at school...After missing each other due to time zones, general mothering, and both of us homeschooling, I resorted to sending her a list of help ideas for calming after school.

Since I had a perfectly good, written list, I decided to kill 2 birds with one stone, and share it. Will this apply to you? Maybe. Maybe not. But I felt like I should at least post my "start" list for those it might help...

If you want, you can email me and tell me what tends to work on this list and I can offer more stuff in the same vein…Or you can email me or comment with more things that have worked for yourselves and your little peeps to share with those still searching for that magic bullet!!

These are things that have helped Elise at various junctures of the TOO MUCH-ness of day to day...Some worked at one point and not at others, some are non-stop happy places...but the key is, find something that keeps you and your little sensory bug sane!!

Okay, here you go:

1) Nexcare makes a neoprene and Velcro and elastic back brace/support belt ($20) that we took one elastic side off of and wrapped around Elise’s belly…she wore in on car trips when she was nuts and at school during transitions for years…and any day when she was totally strung out… The pressure was like a bear hug and she could deal with the loud and people “flashing” around her better. (You can get whole therapy vests, but they were insane expensive!)

2) Have you tried a weighted vest or blanket? If you sew in cherry pits, long cook rice, or seed corn, in rows or squares, it can be microwaved too…surprisingly, temperature changes helped Elise, too…they can be made inexpensively or borrowed at/from school…

3) Simple light weights on their ankles/wrists?

4) Under Armour (or similar) lycra shirts that are too small, act as a wrap too…in a pinch, ace bandages, no lie…

5) Do swings and slides help or hurt? If they help, speak with a teacher to get them first and last dibs on a swing or on some kind of interval plan.

6) Would a headset with music of their choice help? (I bought an iPod shuffle off a bartering site for $20!) Shooting ears (those headphone looking noise control earmuffs? Ear plugs? Take the sounds down a few notches…

7) If you have a swing chair, take out the safety body so it hugs them tighter… Try a cloth hammock hung from the same hook or a single safety hook in a stud…

8) A bean bag chair with half the beads taken out so it cups around them more…

9) Do they have a “petting” thing? She prefers to "pet" people, but Elise will willingly pet certain stuffed animals…We've been known to send in stuffed animals and scraps of faux fur in her pocket sometimes…she holds them under the table and pets them… (We've toyed with getting her a service dog and this would be one of the benefits, she will sit and pet our dog for forever, too.) Elise has a friend that keeps marbles in his pockets to fiddle with… so, really, whatever could help, sky's the limit.

10) Heavier/lighter weight fabric, in his clothes? Elise’s sanity level can be seriously impacted by sleeve length and weight…loose shorts will make her nuts, and tight shirts will flip her out…Seasonal changes are quite an exhausting transition for her...

11) Also, have you seen Smart Knit socks? They are on my short list for Elise’s birthday….

These can ALL be written into an IEP...

Hope this helps SOMEone a tiny bit…let me know if it's you...I will rejoice with dancing and shouting with you!!! :)

Thursday, September 1, 2011

Nine. The Raw Truth.

I have been dabbling in melacholy again. I don't indulge in this very often. But last week, while I was sick, I slipped. I realized, all of a sudden, that my imaginary timeline has a serious flaw.

At nine, Elise was going to be able to talk. Like a typical 4 or 5 year old. And I was going to get to hear some of what was going on in her mind and heart.

It's not going to happen.

Elise will be nine at the end of October. Barring some miraculous miracle, Elise will not move from a 2-3 year old vocabulary to a mature and chatty 5 year old vocabulary.

And so I cried.

Today, I am okay...I will probably end up with a new imaginary magic age, like 12... But I can start waiting again...and that's all I can really do, anyway. But I have regrouped...I can happily celebrate the tiny miracles...

Anybody else ever done something like this? I don't want to be all alone in the crazy today... :)

Childhood Cancer Awareness Month--Or The REST of the Story

I have very mixed feelings about cancer. I mean yes, it is bad. But I cannot say, "Cancer Sucks!" and leave it at that like some changed me, it changed my life, it changed the perspective of our family, it allowed God to move in surprising ways. We saw miracles...

Elise had AML, a form of leukemia. She is a survivor. She proved to so very many people that the "flaw" in her genetic make-up did not make her weak. For whatever "imperfection" it brought, it also brought with it some surprises.

I know that I have mentioned this before. I will bring it up again in the future, because it still awes me. The fragility of the cells is accused with the responsibility of why so many children with Downs are diagnosed with cancer. Bizarrely enough, it is also why their cells respond so positively to the chemo. Because the cells are fragile with their bonus chromosome built in, they are changed more significantly, killing the cancer, with less chemo. The actual numbers stand at kids diagnosed with AML who are "typical" have a less than 30% survival rate, kids with Downs have a better than 98% survival rate at 5 years.

Chemo, the side effects, the living at the hospital, the changes that have to go down in your family to survive, the fear, the darkness, the loss, no matter how it is all hard, bad, awful. But in the moments, there is still life to be lived...and it is the sweetest...

This month...I plan to blog about one sweet thing about cancer once a week....or more if they come... Yes, you totally heard me right. It took me a long time to find the truly see through the purifying aspect of it.

For the first several years, I thought that the experience of just getting to the other side, to survival, was the sweet part of Elise's story...but the more I look back on it, the more I see that there was so much MORE to the story....

So tune back may find yourself surprised...