"Grieving the loss of a child is a process, it begins the day your child passes and ends the day the parent joins them."

Monday, September 19, 2011


...is Childhood Cancer Awareness Month.

I've been laying low when it comes to blogging. Haven't had the desire to sit down and just do it. Call it self pity, laziness...or just simply neglect, I've just avoided it all together. I have managed to check on a few of my friends blogs. But, checking on them has been few and far between too. In all honesty, I've tried to avoid all the "back to school" posts. Although I am so happy for all my little Down syndrome (Ds) friends, as they venture on toward another year of school, learning and fun. Again, call it a little self pity, but my heart aches just a little more..knowing that my girl isn't among that group of back to school--ers.

I thought I'd sit down and blog about something that will always be a part of my life. Childhood Cancer Awareness. In case you missed the title of this post, September is Childhood Cancer Awareness Month.

Many of you know the story of Carly and her diagnosis of cancer. Acute Lymphoblastic Leukemia (ALL), on Sept., 25, 2004. Trust me when I tell you, NOTHING and I mean NOTHING can prepare you for the words, "your daughter has cancer". It knocks you down. It brings you to your knees. It takes the wind right out of you. Especially if you had no idea that your kid has about 80% greater chance to develop leukemia than the "typical" child.

Unfortunately, leukemia is not something that is all that uncommon among the Down syndrome (Ds) community. How on earth my family went for nearly 2.5yrs before finding out that Carly had a much higher probability of some day being diagnosed with leukemia is beyond me. But, no one ever told us and we certainly never read about it. We were devastated and absolutely in disbelief and very much terrified for our sweet little girl.

Sadly, I've learned quite a bit about leukemia. I really had no choice but to get educated. Fast! Childhood cancer is scary. VERY scary! The first few days after diagnosis is horrifying. You are given TONS of information. Doctors and nurses come at you and your child from all different directions. It's kind of like watching the cartoon, Charlie Brown..when the teacher is talking to the class, but all 'we' hear is, waah wahh wahh...that's what it's like being bombarded with "cancer" terminology. It's exhausting and overwhelming.

As a parent, you quickly catch on to all the terminology. You learn to how read all the reports. You learn all the different types of blood tests and their importance. You are told about broviacs and ports. You quickly learn how to flush IV lines. You learn all the different types of poison..err I mean, chemo names and their side effects along with the risks associated with the chemo. You are given the 'road map' or protocol of your child's cancer and a treatment plan-in our case, it was 26 months worth of chemo. You learn all the ins and outs of IV chemo, oral chemo, steroids, spinal taps and bone marrow aspirates. You see your child receive blood pretty regularly, especially in the beginning. You see the bag of platelets that are given to your child, when their platelet count is dangerously low. And you see children of all ages, infants thru teens who are deathly sick and fighting for their lives. You see pale white skin, bald or thinning hair, big black circles around these children's eyes. It breaks your heart and if it doesn't, you my friend,,, are NOT human!

As you are thrown into a world that most of us didn't bargain for you quickly learn how the platelets work and why they work and why they are so darn important. Parents learn how the immune system works, we learn all about the absolute neutrophil count (ANC) and whether the ANC is high enough to continue with chemo..or if its low and chemo has to be put on hold until the ANC comes back up to a safer range. We also learn how the white count works with the ANC..the correlation between the two. We are told of the signs of a low red blood count. We are taught to watch our kids closely. Watch for fevers and if a fever does occur, head to the ER if the temp reaches 100.7-under the arm. Infection is always worrisome.

In a way, parents who had no desire to get into the nursing profession,,suddenly find themselves right there in the midst of "nursing". We learn to give shots..although, I flat out refused to do the shots. I had family and friends who are nurses, they came over and gave those shots to Carly. No way in HELL was I going to inflict pain on my little girl. NO WAY! But I was taught and had the need come, I would have done it. I did however, learn rather quickly how to run IV's, flush lines and all that crap. Thankfully, Carly had a broviac (and later a port), which meant she didn't have to be poked by me. Nonetheless...it was awful. UofM always told us parents, "when treatment ends, you parents earn your honorary nursing certificate" I told them, "no thank you, I'll pass!"

Most people do not realize all the different types of childhood cancer. I still don't know all of them. I am however, very familiar with ALL. Lived it. Know it. HATE it.

Being a cancer mom, you learn how to live a whole new life. Life as you once knew it is over. A new life begins. Life full of medical terminology. Frequent Clinic visits and lab work. Friendships made with other children and their parents along with nurses and doctors who become extended family members. Long days spent at Clinic, trips to the ER in the middle of the night along with many admissions into the hospital. It's a nightmare. You see your once vibrant child, looking deathly ill with pale skin and dark circles under their eyes, you see the weight loss and weight gain in your child. And some of us will even experience very near death experiences.

A diagnosis of Childhood cancer wreaks havoc on your entire family. Siblings of a cancer child often times feel forgotten. The focus has to be on your sick child. Forgetting your other children is NOT something we, cancer parents, intend on doing. But it does happen and it happened to our kids. I know our kids knew that Carly needed us..but still, they were left alone more times than I even like to think about. But, we made it through cancer and we were learning how to live a new normal life..because life never is normal again...not as it was before cancer hit.

I often times get so pissed. Pissed because Carly fought and won her battle with cancer. She endured 26months of chemo along with many hospital inpatient stays and 3 extremely close calls with death. All of which, she WON...only to lose her life in a mere 1.5hrs. Makes me sick. That's what she gets for enduring the evilness of cancer?? Pretty messed up if you ask me. And for the record--Carly had NO cancer whatsoever, within her little body at the time of her death. She was CANCER FREE!

I leave you with the face of cancer. The many faces of Carly fighting ALL-(leukemia). CANCER SUCKS! However, do you see that little smiley face in nearly every picture?? Yep, this little girl brought US through this horrible nightmare. She carried US through it. She made US strong while she was so ill. I was asked once, during treatment, "Joany, how do you do it?" My answer, with no hesitation, "because Carly keeps marching forward. She is carrying us through it and that's how I do it." Even in her weakest days, she gave her "mama" all kinds of strength. Love her and miss so much. Much more than most of you could ever even attempt to imagine.


Twilson9608 said...

What a beautiful girl. Thank you for posting this.

My name is Sarah said...

How hard this must be for you to share, yet how kind to help educate others. Carly will never be forgotten.

Cindy said...

Thank you for sharing your heart... and your Carly with us. I think about her often.

Stephanie said...

I know this was a hard one to write. Some day I'll come here and leave without crying, but not today.
Hugs to you from me.

Lacey said...

I never realized the scary truth of childhood cancer until I worked at the hospital. Of course I knew of Leukemia and the other cancers, but not how childhood cancers come back so much more than adult cancers. How underfunded they are, and that is just plain wrong. our children are our future, and as much as I believe Breast cancer is important, its getting a lot of attention now, and its time to turn to childhood cancers to get the same awareness!

Becca said...

Ohhh, that beautiful, beautiful little girl. So many things a parent and a child should never, ever have to go through. This is a wonderful post and a very important reminder, Joany.

Denise said...

Oh my goodness, I was doing fine reading what you wrote, seeing as I have lived it myself (although our path was quite different). But it was the pictures that have me bawling!! I never got the chance to meet Carly but I miss her so much right now!! And I miss you and Paul too! I have been a big blog slacker too :(