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!!"

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:
(TBA)

 

Here is the Big Time Rush's Facebook page:

http://www.facebook.com/#!/bigtimerush

 

Here is the Twitter link (if you are more tech-y than me):

https://twitter.com/bigtimerush

 

And lest you think this is a Facebook scam, here is her Caring Bridge link:

http://www.caringbridge.org/visit/janefiemeyer

 

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...

 

Thanks!!!

UPDATE: 

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...http://www.celebuzz.com/big-time-rush-fan-loses-battle-with-cancer

Updates...a Quickie Post

Real quick!! 

Elise's daddy had reconstructive knee surgery and has Elise's super sensitivities to drugs and is struggling with both the recovery and the side effects of the drugs that are supposed to be "helping" him.  And so I am going crazy...

Elise is enjoying her new classes and new teachers...and is putting everybody through their paces...looking for the chinks in their armour...which she will then assess how she can use them...seriously...this is her MO.  She may not have a super IQ, but DANG can she read people...

I finally got a call back from the ABR (sedated hearing test people) and the communication technology specialists.  We have the ABR scheduled for the first of September and the communication assessment for the middle of November.  I am really looking forward to the results of both...AND I wasn't forced to break into their offices and threaten their first born...but just barely under the wire...  :)

I also finally found a speech therapist that she will be able to attend regularly!  YAY!

Also, in my stress of everything, I have fallen back on my own comfort food...Indian food...MMmmmmmm!  And you want to know something?  My kids all like it...!!  Elise is all but licking the bowls...  Peanuts?  No.  Grapes?  Uh...NO!  Curry?  Cumin?  Potent spices?  Delish!! 
teehee!

Also, she wept copiously when I went to swim laps at the pool...she wanted to go something awful...I think I'm going to try and take her to play one time soon...maybe if I get brave, I'll attempt swimming lessons.  SERIOUSLY.  Even typing that makes my chest constrict in stress a little...but maybe...

Eating

As I said before, we engaged a private Speech therapist for Elise this summer.  She was able to get some additional time with her by adding a "feeding" portion to her appointments.  I was hopeful, but to be completely honest, I wasn't sure it would make a significance difference without a LOT of intervention.  But I felt that whatever time she could spend on it and interacting with the therapist would not be wasted.

For those who have missed some key points, on top of the Downs, Elise has some serious, and somewhat debilitating sensory issues.  These were also aggravated by the effects of the chemo.  The flavors of things got really "Off" for a while.  Eating has been a serious nightmare for about 8 years now...
Scroll forward to today, Elise was hungry (when is she not??) and was whining to eat.  I said sure, she could have a couple for bites of the pork I was putting in supper...and she snarfed them down quickly and started begging for more.  I said that the rest was mine and I had already mixed the pulled pork in with some spinach and drizzled some rasberry vinegarette on it.  She, of course, was not willing to back down, yet.  Finally, I offered her a bite, usually she backs down on that one..but she said "Ahh".  So I let her have a bite.  She gobbled it down and begged for more...and more...and MORE.  She ate 6 BIG bites.  Usually looking at spinach on her plate will cause her to gag.  BUT SHE ATE IT!!  I was seriously shocked.

Also, our littlest has serious allergies to dyes and preservatives.  So we have slowly been overhauling our eating habits.  Everything has been changed.  And Elise has really not enjoyed it.  AT ALL.  But she's getting used to it.  And even, in some cases, really coming to like it!!

This week alone, she has eaten and ENJOYED:
Scratch hummus and pita chips (although she's been caught sneaking it on corn chips!)
Spaghetti with pulled pork, fresh basil, fresh diced tomatoes and parmesean cheese, topped with mozzarella
Mashed potatoes
Raw spinach
Ginger dressing
Homemade greek yogurt ice cream
Honey on her pancakes
Applesauce on peanut butter toast

At therapy she has eaten pistachios and almonds.  She bit a carrot (and then spit it out).  And both of those are HUGE.

Okay.  You may not be properly impressed.  But consider this.  Elise does NOT eat new food without retching.  She eats only combinations she recognizes.  She would happily subsist on crackers and toast.

I am really excited that we will be able to pull off real meals MUCH sooner than I would have EVER expected.  EVER!!

In Our Shoes - P.S.

I had to clarify this morning's post for a friend...I am hurting about Elise's current status less for myself, and more that my baby is aware and not able to "speak" for herself....it hurts me to see her hurt.

When she was little, she was a pixie.  When she was a toddler, she was so effusive that her smile brought one to others.  Now, there is obviously something "wrong" and now we get the questioning stares, the judging looks, the pity, and the disregard.  I am a big girl.  I have lived a lot of life in my years.  I don't care for me, what those looks are...I care for my girl and her heart.

When we are home, I feel it less.  But with everyday that passes with her sisters, I am seeing more questions and sadness in my Littles...and fleeting moments of *not normal* hit...

But when I am with her alone, I see only her brilliant smiles, I hear only her giggles of joy, I feel all of her emotions with and even without verbal response.

I drove up to my parents this afternoon, and mulled some of the responses of my friends in my mind...and this song came on the radio...and felt that it needed to be my P.S.  It said almost all that needed to be said...

"Chasing Cars" by Snow Patrol

In Our Shoes - What do you accept?

This may be a melancholy post for some.  But I am genuinely asking this question of those with older/adult children...


"At what point do you make peace with the idea that it's not 'going to be okay'...and that despite the highest of expectations and the most extraordinary educational opportunities, your child will not wow the world. At what point do you accept that your child will change you, and that's it?"

Elise will be 10 in a few short months.  As I mentioned HERE and HERE I expected and expected and expected....and I do not see the open field of opportunities that I had seen for my daughter when she was 2.  I just don't.

I was told after she finished treatment for her leukemia that there would probably be some mental retardation as a consequence of the chemo.  But when your child already has mental retardation thanks to a disability, there is no way of knowing what effect it had on her.

Plus, the range of IQ is huge in people with Down Syndrome.  There are high functioning people with it, and there are low functioning people with it.  And it all does not come down to their parents expectations and the opportunities given them...not all of it.

This question comes up because of several things...many, if not most, of the people I know with kids with Downs have little ones...they are under 5.  And they are still writing, arguing, and fighting the school system for opportunities that are limitless.  They are still following the Einstein Syndrome model and are still fighting the world at large for the same view of their baby.  And don't get me wrong, that is a good thing!  But there will come a day for all of us parents with kids with special needs (really, ALL parents, right??)  where you will have to take stock and meet your child where they are.

Also, I am seeing Elise shut out in our own home because she cannot play or communicate.  The little girls are playing house, dolls, concerts, dances, plays, and animals...and Elise can't.  She is becoming aware of this, I think.  She used to try harder.  Now she only attempts to join them 50% of the time....if that.  I encourage her and them to play things they can all play, but even mama cannot fix this one all the time.

The inability to communicate especially hit me this summer and Elise is now getting private speech therapy that is specifically targeting the social communication with peers.  I am pursuing a speech device, I have left whole hosts of messages with the specialist down at the hospital...and as each week passes, I question if they have any intention of calling me back.  It will be a big surprise when I show up on their doorstep if I don't hear back...don't think that won't happen, okay??

The depth of the lack of communication hit me pretty heavily last week.  Elise went to her beloved hippotherapy.  And had a kitten.  She took off her shoes, threw them at the therapists, let all the horses out of their stalls, and cried in the dirt.  At first I was in a state of utter disbelief...then when she volunteered to go home and take a nap, I realized that there was something else going on.  To make sure that it wasn't a well-organized attempt at escape from work (which I would never put past her!), we made her go back in for another 30 minutes and work on physical exercises.  She had to "be" the wheelbarrow to work her arms, and then she asked to do the climbing wall...something, she's wanted to do since they installed the wall...and she worked hard, in her crocs.  Which brought to mind a total nervous breakdown she had when she was 2 and it turned out her shoes were too small...Which caused me to be suspicious of her shoes.  So, on the way home, I took her by a couple of shoe stores.  Not surprisingly, she had outgrown her shoes.  She went to therapy in a size 13 and we bought a size 2 (for those of you who aren't properly impressed, that's 2 full sizes).  And lest you respond, "Well, brands vary..."  it was the same brand (there are only so many that fit her).

It brought me low.  My child cannot even tell me that her feet hurt.  That her shoes don't fit.

THIS article was shared with me this week.  And to be honest, it was a bit of a kick in the teeth.  Until I read it again.  The mother is discussing her preschool son.  I used to love reading articles like that one, and ones like THESE...  They inspired me.  Nowadays, they just remind me how very far from that Elise is...and as the years pass, I wonder if that will ever be her future.

Now, please hear me.  I am not giving up on my daughter.  I am not.  Everything may finally *click* and fall into place.  As everyone constantly assures me it will.  And I still want from her, her best.  But I also need to start being realistic.  She may not be "high functioning".  She may not be able to "change her stars".  She may not ever have the friendships and relationships I had hoped for her.  She may find solace in movies and petting her cat.  She may not be able to ever follow the rules in a game enough to play a typical sport.  She may never be able to attend a party without me playing interference.  She may never be able to stay home alone.  She may never hold a job that inspires the parents of children with disabilities with hope for their future.

And I need to be okay with that.  More than that, I need to glory in it.  This is a child that we have almost lost 3 times.  This is a child that we have fought for medically over and over and over just to have with us.  I have no personal space anymore.  She lives in it.  I have to beg to go to the restroom alone.  It is exhausting.  But she loves hard and rejoices brightly.  She has changed me in so many ways.  She has refurbished my life and my perspectives.  She does a happy dance over the littlest things.  And I do too, now.  And that needs to be enough.

Summer Livin'...

...Is not so easy.

Elise thrives on scheduling.  Which I really like, myself...most of the time...but not like Elise loves it.  Elise loves school and spent 3 weeks asking to go back. I felt a little badly, that she couldn't go hang with her friends...but a smidge hurt that she didn't enjoy vacation with me...

I keep wanting to do another Esther serial.  Car Etiquette.  Because, wow, do we need it!  But every time I turn my back on her, Elise is dumping stuff out, eating hand-over-fist out of the pantry, or smacking her sisters.  And so, unless I do it at night, which makes for some bad lighting, it's not going to happen until school starts back.  And so I sew and read and clean within arm's reach.

Charlotte and Amelia are playing really well together...and as Elise has never really gotten the "hang" of playing, she finds herself shut out.  She mostly stands around, and after a while, starts whining that she's hungry...or watches 1.75 minutes of a movie over and over and over.  Right now it's Astroboy and Wallace and Gromit...and we still like the Halloween shorts of Shrek...STILL...Why has Netflix not taken this down???

Behaviorly, she is having a hard time, too.  Elise has been off her ADHD medication for a month or so.  And we can REALLY tell.  She is skittery.  She is hitting.  She is volatile.  But she had taken to twitching and several ticks.  It was one of the side-effects listed on her ADHD medicine.  She had a follow-up with her neuro who got to see a couple of her ticks.  I was paranoid-ly worried that the ticks were side-effects of her medicine or indicative of seizures.  But thankfully, the neuro thought not.  She is pretty sure that they are actually out-growths of OCD.  She told me that ticks usually manifest between ages 6-10 years old.  Ticks are not too foreign to us.  Both her father and myself have dealt with them ourselves.  Back to that old apple and the tree again.  And Elise loves to organize her toys by color and size.  She delights in anything that "match".  And so I am starting her back on her medications again this week.  And so we shall see.  I keep hoping we will see the end of them sooner rather than later...because unlike most of the time, I am less worried about the ticks for her, now that I am reassured that it is not a red-flag for a big baddie, I am worried for me.  There is nothing like ticks to activate a dormant issue.  I used to really have issues with it myself and was able to beat it back..but when Elise starts ticking, I feel the compulsive need to move come back...like when someone mentions ticks (the bug) or lice...suddenly you have to itch your head...tell me you didn't just run your hand through your hair just now, right?  But back to my selfishness...I need her to stop ticking, so mine doesn't return and make me CRAZY.  Because for me, I am aware of my ticks and the inability to stop really makes me nuts.  I really don't need the power of suggestion, frankly.

In related news, Elise is now getting speech therapy from a private entity.  First time, ever.  We should have done it sooner, but this is the first time since she was 4, that I don't feel like I am drowning in commitments.  Elise and Deidra are working on feeding, sign language again, and social give and take conversation.  The sign language is as much an independent form of communication as it is a physical marker to slow Elise down and remind her all the parts of a sentence.  The therapist also gave us a referral to a speech device specialist.  This specialist will do an intake with Elise and assess her strengths and weaknesses and will recommend a device that will help her best.  I have been forced to wait out everybody's vacations, but eventually we will get some new answers.  And hopefully, Elise will qualify and she will get her hands of something that will help her communicate with her peers...and it won't be such a guessing game when she tells us all about her newest obsession...Like a few weeks ago and it took me several days to discover "Sare Bot" was "Dinosaur Max" from Dino Squad...which she LOVES...and she was SO frustrated that I could not figure out what she was talking about!!  It's one thing to not understand and be sad for her myself, it's a whole 'nother when she is aware of the communication breakdown and is depressed on her own.  That breaks my heart.

If she could tell you, she'd probably be counting down until school starts.  Right now (for once) she is playing with her sisters...School.  With their dolls.  :)