Sunday, September 30, 2012

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.

Monday, September 17, 2012

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!

Saturday, September 15, 2012

What is Down Syndrome? for my 6 year old

As I have said before, Amelia and Charlotte are beginning to realize more and more that Elise is not like everybody else...  And on the evening of Sept. 10, her cancer-free anniversary, Amelia asked again, over cake.  And this time, I gave her a Longer, More Complicated Answer.  Because it is coming up more often, she is apparently craving more information...and it impressed my mother.  Now, I realize it's my mom, and my "brilliance" is always magnified more than it actually is...because it's my Mama...but the way I said it, made a visible impression, and she has gone back to it several times since...and so I decided to post it here, in case it really is brilliant.

"Why can't Elise talk or act like me?"

"Because Elise has Down Syndrome. It is something that confuses her body, so it takes her longer to learn things.  She can learn all the things you can, it just takes her longer."

"But what is Down Syndrome?"

"You have something called chromosomes that work together to make all your body parts and help your brain work.  Elise has an extra chromosome, and it confuses her whole body.  It's kind of like when EVERYBODY is talking really loud, all at the same time...and you slowly have to ask everybody to be quiet and and listen to each person, one at a time...which takes longer than if everybody took their turn talking...right?  Make sense?"

<<Amelia, nodding>>

"That's what her extra chromosome does to her body, it confuses her talking and her learning...and why she has a hard time zipping and buttoning, why she doesn't remember not to do dangerous things or act like an older girl, it's even why she is sick more often (it even confuses her inside body parts, so it can't fight being sick like you can)...It's because her extra chromosome is yelling at her and confusing her."

"Oh, okay."  <<returns to eating cake>>

So there you have it.  The bare bones version of Down Syndrome.

(And yes, I am absolutely aware that I used 'confuse' about 70 times too many, but, you have a limited vocabulary when explaining to a 6 year old.)

Cake. Without Friends.

I was tired this morning.  Because of the chronic reason of this school year.  From the beginning almost, Gabriel has stayed up entirely too late for lacrosse practice or to put his school work back together from poor choices.  And then Elise is up before anyone's alarms even THINK about going off.  After 7 days of this, I am reduced to sleeping in on Saturday (praying nothing goes south) or snatched naps (when I ought to be cleaning, doing laundry, or any number of things).

So I turned on Elise's current favorite new movie, Flushed Away, and hovered in the entirely unrestful sleep where parents go to listen for disasters, but get some needed energy.

My bells did not go off early enough today...I realized that Elise was not in the bed with me...about the time she came back in with chocolate on her face.

The chocolate from her brother's birthday party cake (for TONIGHT) that I made last night.


I came out to survey the damage that I KNEW must have been done, to find that the entire top half of the cake had been smushed into the entire back half of my house and the top of the (CLEAN!) laundry.  I have been scrubbing the runner rug, washing the walls, re-running the laundry, and scrubbing the washer and drier of cake ever since.  It was rather like the first scene from Encino Man when he is "defrosted".

I am thankful that I had not yet iced it, because I was able to repair it, by removing the mauled top half and cutting it down to a rhombus shape to plunk on top and filling in the holes with crumbled off cake.  It looks like a Dr Seuss kind of thing now.  It will still taste pretty great, but Gabriel's friends may think his mother is two steps from crazy...which is probably true.

Beside the frustrating part of having to clean something I had not planned on cleaning, I am faced with Amelia and Charlotte telling off their sister and the permanent assumption that if something has gone wrong, it is Elise's fault.  Which, truthfully, is not ALWAYS the case.  But because Elise does not have the speech to defend herself, she has become the Fall Guy.  And it breaks my heart...and we have come around to the necessity of speech/communication...yet again.  And so I am *again* faced with defending the (currently) guilty Elise, while I clean what I didn't want to, and reprimanding my two typ kids from being too judgemental, and calling a check to their feeding frenzy of guilt assignment....when all I wanted to be was asleep.

I am still deciding if Elise will not get "cake WITH friends" (her staple touchstone of joy) because of her indulgence this morning...or if we will decide that she has done her time out, and carry on with the day...

With the stress of this week, I think we all deserve Cake With Friends, because it is delicious....and everybody needs cake to celebrate something....

Thursday, September 13, 2012

A "Fighter"

If you ask anyone...who has a loved one with Downs or not...they will have a stereotype to give of kids or people, for that matter with Down Syndrome.

I get the "loving", "sweet", "angels"...answers all the time.  Yesterday I do believe that I got the most honest answer and possibly the most accurate stereotype.

Elise's new Speech Therapist and I were chatting about possible factors/tendencies that may be affecting Elise's speech, and she made the comment, "Well, she is very much like all the folks with Down Syndrome I've ever worked with, in that she is *Very Stubborn*."  We laughed, because that is certainly probably Elise's over-riding trait...and I started thinking over all the kids that I have read about in blogs, the kids that I have met, and adults that I have had contact with, and started wondering if that isn't the most accurate?  Whether they rely on passive aggressive tricks, full on mule, or shouting...I've not met a single person with Down Syndrome that doesn't have that trick up their sleeve....

Now, lest you start getting defensive...I have a theory to go along with is NOT a criticism.  I believe that our kids are fighters.  I believe that they can go far because they are willing to fight for themselves.  Whether they are demonstraters or whether they are recluses, they are willing to take steps to protect themselves.  They have extra challenges, but given the proper tools, I also believe that they could maybe have the most hardwired opportunity for success.

I have laughed about the fact that we gave Elise my middle name, Nicole.  It means "victory over the people."  We have teased that perhaps she takes that a little too seriously, and claims that as her prophecy...  But maybe, just maybe, we accidentally got it right???

How about you weigh this a true call for your loved ones?

Wednesday, September 12, 2012

Childhood Cancer Awareness...the music that touches...

These are a few songs that take me back and have not failed to touch people at their core...I hope you will choose, not only to listen, but to hear the stories....
Rascal Flatts isn't one of my favorite bands, but the chorus reaches to my heart:
This one hit so deeply...and brought so many names to mind...

Tuesday, September 11, 2012

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 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 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'd think they would reward me for that...with cakes and a 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? 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!"

Friday, September 7, 2012

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 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

Wednesday, September 5, 2012

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.

"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 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!!"

Monday, September 3, 2012

Reach Out

Well, this isn't exactly what I thought my first September blog post would be about, but it certainly is on topic...

On one of my doll-making boards, someone posted this up: 
"Ok...a little girl needs your help! Sweet little Jane has battled Leukemia hard, but unfortunately the cancer is winning. She is now home in hospice waiting for the inevitable... but she has a dream- to meet the boy band Big Time Rush. What an awesome diversion that would be for her! But she needs your help! Let's make sure that BTR here's her story! I have encouraged Jane's family to set up a separate group facebook page for this endeavor and when that happens I will post it here... that will make it easier to "tweet" about it, if we have a page to link. But in the meantime we can be spamming their facebook page. If anyone has other suggestions, then that would be useful! I know that Ellen's page is being spammed also in hopes that she could help with this. If this was your daughter you know that you would want to make anything that she wanted in her final weeks possible, so let's pull together and try to help! We are 1100 women strong here!"
Here is her Facebook page:
Here is the Big Time Rush's Facebook page:
Here is the Twitter link (if you are more tech-y than me):
And lest you think this is a Facebook scam, here is her Caring Bridge link:
All I am asking of you is to copy the link to her FB page and/or her Caring Bridge link to the Big Time Rush page, and request they consider making a little girl's wish come true.  It'll take like all of 3 minutes.  And you may help make a little girl struggling, very happy!  And provide good memories for her family if she indeed succumbs to the leukemia...STINKY CANCER.  Link up to anyone you think may be willing to spam them...

For those that helped join the campaign to bring Big Time Rush to Jane, she lost the battle, but not without receiving a video telling her that they would skype her...and there were plans churning for them surprising her with a visit...
I hate that they didn't make it in time, but I am glad that she knew they had heard and were trying to make her feel special. Please pray for her family in their loss...

If you added your voice to her request, a quick thank you for their attempt would be sweet...