Wednesday, April 23, 2008

The "L Word"

When Ciarra was born, I found myself facing a lot of what-ifs. What if she never talks, or gets potty trained? What if she is profoundly mentally retarded? How will I handle this, or that, or the other? What if no one wants to be her friend? What if I am not cut out for this? What if...what if...she gets leukemia? "The L word" as we in the Down syndrome community have euphemistically taken to calling it, is akin to "The R Word", and maybe even dirtier. The R word we can tackle, together, and make a difference. We can brush it off, fight back, DO something. "The L Word" is bigger, scarier, a monster that lies just under our beds, waiting to pounce on and devour our children...the children we have managed to steer through all of the other "what-ifs" with love and gratitude. We think of ourselves as lucky, we dodged a bullet, we ache for those amongst us who do have to live with..."the L Word"....but we don't dare look TOO closely...until we have to.

Now I have to. I am praying, and you better be praying too, or in the inimitable words of my hero Jeff Dunham.."I Keeeelll You!" Right now, we are in that waiting stage, the place where Moms go to worry and clean every square inch of their houses while waiting for word that the most dreaded news ever does not apply to their children...this time. As I go off to my corner to await word that we can test again, I am reminded that we have been here before. But...but...last time there were far less ominous signs, it was just a "lets-rule-that-out" kinda thing. This time is different. My baby girl is lethargic, she hasn't eaten in many days. She pushed the envelope of dehydration right to the limit, so bad that her cute little mouth was so dried out she couldn't pucker up for a kiss. She has been completely limp, exhausted, sleeping her days away, fevers raging from 100-103. She would wake up long enough to snuggle with me and tell me incoherent stories that trailed off into startled sleep and raspy snoring. It was Sunday when she woke up and tried to walk into the kitchen, and I watched in sheer panic as her legs gave out beneath her and she collapsed into a ball of hair and tears, screaming that her feet hurt. Uh oh.

Until just that moment, this was just another throat infection we were treating with antibiotics. It was just another "Hey Doc, it's us, your favorite patients. Need another antibiotic, it's back. and hey, can we get an ENT referral again?" Ciarra has had an ongoing battle with some funky throat thing for 2 years now. Ever since they took out her tonsils, she has come down with some odd infection that coats her throat, mouth, and palate with GUNK. Easily treated with antibiotics. But a real. pain. in. the. ass.

In the time it took for her to fall to the floor, I had visions of the last week come dancing into my mind. The notebook her teacher sent home with a note saying she had slept half the day away on the carpet in her room. (We know she gets really tired when she has this throat thing, we are trying to just let her rest as necessary, but not miss too much school.) The day she stood at the bus stop, and looked up at her big brother and burst out crying, then sat down and said her legs hurt. The nights of fevers that made the Brushfield's Spots in her eyes glow as though back lit by a furnace. The lack of eating, the lack of drinking, the disinterest in the favorite food of all time we tried to entice her her daddy says, "When Ciarra doesn't want ice cream, something is really wrong." Now...the inability to bear weight, the pain in her mind was racing...remembering...another child, another story, another Mother's anguish as she recounted the night her child walked around the end of their bed, collapsing in pain, unable to bear weight. Like I said..uh oh. (Actually, what I really said was more along the lines of "oh, shit.")

Lucky for me, I have a GREAT Pediatrician. He listens to me, but even more..he HEARS me. He is honest with me, to the point of telling me when I am worrying too much. We have the kind of relationship where we can joke back and forth with one another and still be friends. I can tease him about his I Heart Jesus socks, and he can tell me that he is determined to wear something that proclaims his faith but that is understated enough not to piss off the people of other faiths that come through his door seeking his mercies. He can be blunt when he suggests that perhaps we want to take another look at our eating habits, when the kids start to climb the scales a bit and I worry about them ending me. He is respectful, understanding, and honest to a fault. He often tells me that I am one of the few parents that will "get" this or that thing he tells me, in Doctor speak. He also graciously takes me correcting him at times, like the time when Ciarra was a baby and in the hospital, and he introduced her to a Medical student as "a great case of Brushfield's Spots"....and was immediately told (in front of said student) that no, actually, this was my DAUGHTER, Ciarra, who happened to have a really neat feature of DS that was called Brushfield's Spots. He never made the mistake of seeing her as a case of anything, ever again.

When this man who we trust to guide us through the medical aspects of our children's lives looks worried...I worry. When he consults with the blood disorders doc...I worry. When he looks me in the eye and says "this is concerning"...I thank God for a man who doesn't pat me on the head and send me away. He knows what I can handle, and that I demand the truth. He doesn't couch it. "This might be something bad," he says, but only when Ciarra cannot hear him. He whispers the word "Leukemia" when we discuss it, sheltering her from a word I am pretty sure she doesn't know and pray like crazy she never will. I love him for sparing her, but I love him even more for the fact that he respects her intelligence enough to be cautious and not just blurt things out, just in case. "It might not," he adds. It might just be this awful infection, the antibiotics messing with the numbers, the infection maybe paired with a virus, skewing the results. He sits with his hand to his chin, thinking. I shut up long enough to let him do so. He contemplates whether she should be admitted. I learn new words.."Neutropenic" means her neutrophil count is less than 2000. It is 550.

"Neutropenia" is a condition of an abnormally low number of a type of a particular type of white blood cell called a neutrophil. White blood cells (leukocytes) are the cells in the blood that play important roles in the body's immune by fighting off infection. Because white blood cells can be affected by many diseases, doctors will often check the "white blood cell count" in evaluating health conditions. "Neutropenia" is present when the neutophil count is less than 2000.

Later, I learn from a friend that this means she is much more susceptible to catching things right now, and that we should use some caution, but not panic. Lysol wipes, she says, are a good thing. They immediately go on my grocery list. By the way, the friend in question happens to be that mom...the one who has stood there (and stayed standing) when her child was diagnosed with..The L Word. She has managed to stay strong..I wonder how a mother takes hearing those words. HOW do you survive, how do you keep plugging away? I want to protect Ciarra from hurting. More than anything, I don't want her to hurt. I am not sure I have it in me to deal with this, if we have to. Of course, I know I must. But could I face it with courage? I guess I would need to, so Ciarra wouldn't be scared. (But if I get any say in the matter, may I please please just wimp out now, God?)

He debates admitting her, goes off to talk to the blood Doc, comes back in and scratches his chin some more. "If the fevers come back," he says, "bring her in immediately." I agree, of course. Reprieve...I bow down before the people who can juggle a family, jobs, finances, etc and still be in the hospital long term with sick children. (Did I mention the mom above has 4 children, all little, including a baby born while her child with DS/L was in the hospital? Or that her oldest son also happens to have autism? Bow..bow...bow...bow...grovel) He tells me that we will have to ride out this..whatever it is...that the fact that she is eating and drinking a tiny bit is encouraging. maybe it will turn out to be just a virus, topped with a healthy serving of throat infection. Oh, by the way, her TSH was off by a fair bit too. We barely discuss that, although her numbers have soared since last year (was 2.56 now 9.67), but it might explain the lethargy, the extreme exhaustion. I latch onto the TSH/thyroid issue, just one little pill a day..fixable. SO much better of an explanation than Leukemia.

I stand up to walk down the hall. Jim calls, he can't stand the wondering anymore. When Daddy's eyes flash fear, something is wrong. He asks me what I know, and I tell him we have to wait to finish this antibiotic, get her better from this..thing..and then retest. it might be nothing, but it could also be something scary. He sucks in his breath a little, almost imperceptibly, and asks me if I need anything at the store. I tell him we are headed home, and the relief in his voice is palpable.

I walk next this Doctor who has always been my buddy, my pal, and is now officially a Professional Medical Expert whose every word I will hang on for the next few weeks. (Maybe months, or years...God no.) Sometimes our relationship has been about being semi equals. He has told me many times he relies on me for DS specific information. He has always been the Doctor, and I have always known that, but somehow now he feels safe, his 'I heart Jesus' socks are comforting. The drawings on his walls of happy children playing, childish scrawls of "Jesus loves you, Dr. Adams" seem uber-important. Jesus loves him, Jesus loves Ciarra. Jesus won't let this happen to either of them, right? They are a team, I am the cheerleader, and we will not lose this stupid little battle. I realize that what I am fighting most right now is fear. I choke it down, follow him to the Nurses station, promise to stay in touch via email. I watch his eyes as he watches her limp slowly down the ramp by his door. There is a questioning there, maybe a little fear, too. He turns to me and smiles, the fear replaced by concern, he sees me watching him for a sign. I wait to hear the comforting words. "If she ends up admitted, don't worry if I am not there right away. I will make sure they treat her right." That is comforting enough, for today. If we do have to fight this monster, he will fight it with us.

I am reminded of last week, when he sang "You are so beautiful" into his otoscope, to a giggling Ciarra. I told her to tell him not to sing. What I would give to hear it again, light-hearted, happy, worry-free tenderness from the Doctor who has treated her since the day she was born. He will be here, I know he will. With a little luck, and 2 weeks to heal up, and a LOT of prayer...these numbers may revert to normal. and we may just be able to walk away from this experience reminded gently of how lucky we are. I can't allow myself to panic, yet. I can't get all wrapped up in thinking bad thoughts. It is hard not to, though. Please say a little prayer for us, if you would.

The numbers, to anyone wondering, are as follows:
WBC count= 1.9
Platelet count="Decreased" 145 thousand
Mature Neutrophils=29
Reactive Lymphocytes=7
Eosinophils=no number given
Plasma Cell=1
Neutrophils Absolute=.55
Lymphocytes Absolute=1.06
Monocytes Absolute=.25
Basophils Absolute=.02
Red Blood Cell Count=5.13
Mean Corpuscular Volume=88.7
Mean Corpuscular Hemoglobin=29.6
Mean Corpuscular HGB Concentration=33.4
Red Cell Distribution Width=49.2
Red Cell Disribution Width=15.2
Mean Platelet Volume=9.6
Vacuolated Neutrophils=present


Christina said...


I will not tell you to worry, because I know that you can't help but worry. But know that I am praying for you and Ciarra. In the last 2 years, there have been three times that we have had to "rule out" the "L" word for Jake. We have done so much blood work, it makes my head spin. We still have not found ANY answer to all of his "blood issues", we just keep and "eye on it" and monitor. We went through the Neutropenic diagnosis too (a few months ago), but fortunately he did not test positive for the antibodies, so it seems that at least "that time" it was transient. So, I guess what I am saying is that I completely understand the "monster lurking under the bed" reference. Even though things seem to be fine now -- the fact that we have had so many scares in the last two years, doesn't let the "L" word live as far back in my mind as I would like. I feel your fear, and I will be praying for you.

RR Group

Kim Davis said...

Oh Chelle - I can't even fathom what you're going thru right now. Please know that you have lots of shoulders to lean on, if needed. I am so thankful that you have such a great doctor.

You are as strong as a rock - rely on that strength and your faith right now - they won't lead you wrong.

Please let me know if you need anything!

Tilly Cat & Pip-Squeak said...


I've only been lurking on RR recently, but when I saw our beautiful Ciarra was sick I had to come and see what was what... I'm sorry things haven't cleared out already for you. Know that I have been thinking of Ciarra for the past two days, and will continue to do so and hope this is soon a bad memory. Please keep us updated.

With much love,


Charissa said...

I know you're scared, I would imagine you cried some tears as you wrote this heartfelt post. I will be praying for Ciarra, but also for you to have strength and courage to face whatever it is. I'm sure the waiting is torture!

Stephanie said...

So so so so so x 100000 much worse than the "R word"....saying prayers here for Ciarra. Keep us posted on her health. Try not to worry (yeah right)...LOVE YA GUYS!

Dawn said...

I dont know you that well but I just wanted to tell you that you and Ciarra are in my prayers.

Mary said...

Your first thoughts easily sum up mine regarding the "L" word. Ciarra is in my thoughts. I hope you can find some peace while waiting.

Wendy said...


As I read this post my instant reaction was Oh No that cannot happen, not to her, not to them!! And instantly began to pray. So I can only imagine the fear and worry you feel.

I will be adding Ciarra and your family to our pray list at church. I pray myself that Ciarra does not have to go through the L issues and to give you and your family strength and peace during this time.


Katrina Stonoff said...

Oh, Michelle! So, so scary for you all.

Like all of us, I worry every time my Girly Girly runs an unexpected fever or has a strange pain or an unexplained bruise. I have an idea how I would feel in your place.

I send warm hugs, good wishes, prayers.

Anonymous said...

Get well soon, Ciarra. Praying for your quick recovery.

Cheche (mom to Raphael, ds)

Milk Mama said...

I've found a lot of blogs about moms with children who have Down Syndrome AND Leukemia. Are these children more prone to the disease? Why is it?

I hope that you get well soon!

Michelle said...

Patients with Down's syndrome have an increased risk of developing leukemia. The reason remains unknown. Although most of the patients have ALL, a great majority of smaller children have ANLL. ALL of Down's syndrome is characterized by increased frequency of favorable prognostic signs. With modern treatment regimens its prognosis is similar to that in other patients. ANLL is diagnosed at younger age, has a large overpresentation of acute megakaryoblastic subtype, different cytogenetic abnormalities, and a better prognosis than in general. In view of the favorable recent results, a conservative approach to treating leukemia of patients with Down's syndrome does not seem warranted. The challenge is to design specific antileukemic treatments that are less toxic but as effective as the best standard regimens.

Mommy to those Special Ks said...


Shannon @ Gabi's World said...

Oh wow Michelle. I didn't realize you were going through this right now. I have been wrapped up in my own stuff lately. I will start praying now! HUGS!

Sabrina said...

I was doing a search on google tonight for some information on Down's Syndrome, and a Ciarra popped up connected to a You Tube video. After seeing the video, I realized we had crossed paths before. You may not remember me, but we used to post on the same parenting boards several years ago (Babynet, Clique Clack). After seeing the video of Ciarra, I wanted to say hello and tell you what a beautiful little girl Ciarra has grown into. I still remember her as a tiny little girl, and she's half grown. She's remarkable and has always been such an inspiration to me, as have you. I did another search after seeing the video to see if you had a website and ended up here. I see that Ciarra is or has been sick, and I want to let you know that I'm sending up many prayers and good thoughts for *all* of you that you will have the strength you need to get through this, and most importantly, that Ciarra will be o.k.

Sabrina (