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

Saturday, September 25, 2010

September 25

Six years ago today, almost to the exact time that I'm sitting here typing, Paul and I were given the words that no parent ever want to hear. Leukemia. Oh my gosh were we devastated with that news.

I sat holding a very sick little 2 year old in my arms. Being scolded by the "head" ER doctor. That "your daughter is very, very sick". Of course, I fired back with my big mouth. "No kidding, why do you think we're sitting in the fricken ER"?

Our heads continued to spin as we were told Carly was gravely ill. Her platelets were next to nothing. Her liver, extremely HUGE; as the one doctor had put it. Her hemoglobin almost nonexistent. Her white count was through the roof.

From that point forward. We thought our lives had just ended. What news could possibly be worse than hearing that your 2 year old has leukemia? Now I know. We started hearing words like Oncology, Oncologist, blasts, spinal taps, bone marrow aspirations, blood counts, broviac lines, ports. Being asked almost instantly, "does she have siblings"? "how, many siblings and are they sisters or brothers or both"?

We learned late that night, after being admitted that Carly had been diagnosed with AML (which is the most common form of leukemia for kids born with Down syndrome) leukemia. We were told how our treatments would be. 6 months of very intense chemo. Ideally, 3 weeks spent inpatient to receive the chemo and a couple weeks at home waiting for counts to recover. Then back inpatient again. This news was given to us by the a female resident doctor, who told us she had gone down to the lab herself and viewed the slides of Carly's blood work. She delivered the news to us about midnight on the 25th. By this time, Carly was receiving red blood and platelets. Still, our heads were spinning.

Early the next morning, on Sept 26, we met our Oncologist. He came in to our room and sat down telling us about a completely different type of leukemia. ALL leukemia. He went on to tell us that this was the "best" form of childhood leukemia. If you had to pick one for your child to have, you'd definitely want this one. He went on to tell us how the survival rate is much higher. And how the treatments are not as harsh. And that they can cure this one with like a 90+% rate. He continued on telling us of the treatment plan. 26 months. Yeah.... our mouths dropped. We then explained that we were already told she had AML. That the resident told us she looked at the slides from the blood work herself. Needless to say, he was NOT happy with that resident doc! And so, our heads were spinning again. Being hit with a whole new plan. Hearing 26 months worth of treatment didn't sound like something better to us. Verses 6 months... it sounded so much worse.

Soon after our talk with the Oncologist, we started receiving information regarding ALL. Reading about all the dangers involved. Reading about all the side effects. Realizing we were in for a very, very long haul.

So, today goes on. Not how we expected it to be, six years later. We never thought for one minute that Carly would not win her fight with leukemia. She had proved herself a determined and strong little girl twice before, with both open heart surgeries. Sure, there were times we nearly lost her throughout those 26 month; all of which were due to chemo drugs. But we never doubted that she would beat cancer. Beat cancer she did. She went into remission on the 14th day of treatment. Full remission. Zero blasts in her blood. Perfectly clear bone marrow.

Just the other day, I told my counselor that I feel so cheated. Cheated due to all those years of treatment. Treatment which caused our lives to be changed. Treatment that caused us to spend so much time inpatient with blood infections and fevers and dehydration from chemo. I feel cheated that we didn't have our happy, healthy little girl longer in our lives. She was taken so quickly, with no warning whatsoever. We NEVER saw this coming. EVER. We feel as if we only had about 3 1/2 healthy years with her. Well, that's not true. She was healthy from the age of 4months to 2years. In between heart surgery 1 & 2. But then, three months to the day of being discharged from heart surgery #2, came the diagnosis of leukemia. So anyway, yeah... I think we were cheated.

Now we sit here wondering, why?? Why she's no longer here. Yes, I know it was all heart related, but why? I know there are so many of you who believe in God. Right now, me and God aint good. At all. I will never understand a God who allows a child to go through so much sickness. Why doesn't he heal them? A God who snatches a child right out of the clear blue and does nothing to step in and turn it all around. What kind of God does that to a child? Not one I want much to do with. Even tho, I still want so desperately to believe that Carly is an Angel in heaven right now. She'd darn well better be after going thru all the crap she has endured in 8 short years. Maybe there's hope for me and God yet...but right now...I'm PISSED off at that so called God!

FYI: September is Childhood Cancer Awareness Month.
Also, children born with Down syndrome have an 80% greater chance of developing leukemia than other children. As I said above, usually these kiddo's develop AML. Carly was one of the very few with All.


Cathy said...

Oh Joany...so many times I write a comment and then delete it on your various posts. I know that no words I say can help alleviate the pain you are going through. I think it's 100% normal to question God. I also know that He's got very big shoulders and isn't upset by your anger. I am certain your sweet angel, Carly, is dancing with Him now.

Stephanie said...

i don't know how I would be with God if I were in your shoes either. and I am in no way going to judge you! I hope no one else does. i remember when I found out Em had Ds, i had some harsh words for God. i definitely had to work through it my own way.
don't mind if I still say prayers for you. I do every night. can't hurt.

Rochelle said...

I agree with Cathy, God can handle your anger and questions and he welcomes them.
He knows your pain, he sent his only Son to die on that cross for all of us.
I too am certain Carly is in heaven.
We continue to pray for your family for peace.

Joyce said...

Tonight I am at a loss for words Joany, as I often am after reading your posts. I can so hear and feel the pain in your words. If only I could reach out and hug your aching shoulders and let you know we are here.

Tina said...

How can you not question God after what you have been through. Just yesterday I was praying for you that somehow God, as only God can, helps you understand that Carly is fine, that she is an angel and yes she is dancing in a very special place called heaven, waiting to be reunited with you one day when the time is right. Today you question God and even God understands that you have to. Many hugs to you, my thought and prayers are with you.

Heather said...

You were cheated Joany and it is okay to say that and it is okay to question God and search for the answers and to be angry.You are entitled.More than entitled.God gets it and He will hang in there and walk with you,even and most especially,when you can't feel Him.Promise.

The Hapa Girl said...

I'm not sure how this is going to come out...not really sure how to put it all in words. But what has been taken from you will most certainly strain your relationship with GOD, to question the what and why's of his actions.

Psalms 61
1. Hear my cry, O GOD: listen to my prayer
2. From the ends of the earth I call to you, I call as my heart grows faint; lead me to the rock that is higher than I.

Carly is now enthroned in GOD's presence forever; His love and faithfulness to to protect her.

Kristen's mom said...

Oh Joany I don't know why this happens either.
But there is something I do know.
Both Carly and Kristen are angels and they are in heaven and dancing they are!
I haven't shared much about this, But I would like to share a little with you now. I have thought about calling you because I think it might do both of our hearts good to cry on each others shoulders. I often think I'll just jump on a plane and go visit my friend Joany and just take a walk with her and cry together. some day.

Remember that my father passed away suddenly last October. He and I were close and he and Kristen were even closer. He dearly loved her and she him. OUr hearts were ripped out. I spoke at his funeral and I remember saying, "I believe God has wanted Kristen home for a while. there were many times she wasn't supposed to make it throught the night. Each time Kristen fights it, she doesn't want to die. I am a little worried that my dad is in heaven now because if he comes to get Kristen she'll go with him, so my dad better not get any ideas."

Three weeks later she relapsed. I won't get into the details here but I know for a fact that at least 3 times My dad visited Kristen. And there were probably many more times, those were just the times that I was in the room, and witnessed her talking to him.

The day before Kristen passed away she told both my mother and my husband that grandpa's angel was coming to get her tomorrow. Neither my mom or my husband told me until after she had passed.

I called the doctor late Monday night with a question. At the end of our conversation he told me that Kristen may pass in the night. I thought we had weeks left. As we had a family prayer that night I knew in heart that this would indeed happen. I slept with her as I had for the pasr two years. I cuddled up next to her and I watched and waited. She woke up 3 times and each time she spoke. (I'll tell you later what she said.)
I was there with her when her spirit left her sweet precious little body. I know my dad was there, I felt his presence. Joany, the feeling in that room was horrific for me, But I couldn't help but feel what a glorious morning for Kristen. The hardest thing I have ever done in my whole entire 49 years was give in to the will of the Lord. But Monday night I finally did it, but more important Kristen did too. For it was her that told 2 people...tomorrow. and tomorrow it was.
Joany, the heavens opened, i felt it and so did so many others that morning, my sweet angel was escorted home to that same God that gave her life, that same God that welcomed sweet Carly into His arms. They live Joany. They are our angels and they love us and are watching over us.
My heart and soul hurts more than I ever thought possible, but at the same time I feel peace. I so want you to feel that peace.
Carly is an angel. without question.

Don't get me wrong here. I many times ask WHY? I completely understand where you are coming from. I have been one pissed off girl many times. These children suffering makes no sense.

I do not know everything, but one thing I do know is that Yes, our girls are angels in heaven.
Love you Joany.

If ever you feel like it you could call or even just text me. 801.750.7745


JennyH said...

I think Polly said it best! My hearts breaks for you as I can tell you are in so much pain.

Carly had a purpose here. It is not fair that now you and your family have to suffer on without her.

Praying for you Joany.

Unknown said...

Your Carly,Polly's Kristin, my Laynee, they are all dancing in heaven and one day we will see them again. I cannot pretend to understand any of it but I know that we will see them again. God is big, he can handle our questions and our doubts. He is on His throne today and He was on his throne the day He took each of our girls home to him. He's never letting go of you Joany, no matter what, he's never, ever letting go of us.

I also want to let you know that I have chosen you for The Lovely Blog award that was passed on to me today. I understand your anger and appreciate your being so very real.

Carol N. said...

So heavy hearted to think of it all. I'm so scared of leukemia for my little guy, I feel paralyzed by it.

I wish you well.

Anonymous said...

I'm glad you didn't get a lot of self-righteous preaching from people who've never experienced true misery. After what you have gone through, "we can't understand all of God's ways" doesn't always cut it. Fairness and happiness are not evenly distributed in this world. People want to say that that's up to the individual but it's not. Most people will never have to lose a child and feel like you do, and that isn't anyone's fault. So, with all this unequal distribution I can't see how a good and loving God could come down on those of us less fortunate ones even more for being angry at the unfairness.
You said before you can't sleep at night knowing Carly is in the graveyard. I know you miss her terribly and she belongs with her family, but the part of Carly that made her who she was is not in the graveyard. She is in a place more wonderful than we can imagine. Those who have gone probably think it's funny that we, stuck in this flawed, cruel world, feel sorry for them.