Sunday, June 7, 2009

Ezra's Story

 

ezrak

May 22nd, 2009 will forever be marked the day the world fell out from underneath us. That is the day that I heard cancer and baby used in the same sentence.

Let me back up though first for a moment. I am sure you are asking yourself how we found ourselves where we are.

Over the weekend Ezra had got bit by a spider and had a handful of bites on him, we were concerned they were venomous spider bites. He was also limping in the leg that the bites were. We took him in to see the Dr.s and they basically said just to monitor him. They ordered an x-ray for a precaution because of the limp.

Its those x-ray results that changed everything.

The radiologist noticed abnormal markings in his bones, which can  be indicative of leukemia. They of course said it was just a precaution but we needed to see an oncology Dr. to follow up.

The oncology Dr. looked him over and did not see any of the typical tell tale signs of Leukemia.  He told us not to worry and had Ezra’s blood drawn to rule Leukemia out.

Later that night we got a phone call and were told some of the lab results looked abnormal, and were told to bring him into ER. They did more labs there, and it was by far the worst night of my life ever.

Results came in, and although they were still waiting on one more result to officially diagnose Ezra, they told us then that they thought he had Leukemia.

We sat there in our curtain enclosed area in the ER weeping, holding our sweet little boy. So many questions swirling in our heads. Why him? Am I to blame? Could it have been prevented? Is he going to die? What next?

The next morning an oncology Dr. came in and gave us the official news and told us Ezra had Acute Lymphoblastic Leukemia (ALL). Some of his first words to us were “ He is going to be fine, he is going to go on to graduate college, be a father, and a grandfather.” In my darker hours, I find myself revisiting those words often. I cherish those words. I need those words. Those words keep me afloat, they give me hope, peace, and reason.

It still doesn’t make any sense to me, how did my perfectly healthy baby go from a limp to Leukemia? Ezra did not present any of the typical symptoms of Leukemia, besides being pale. But if you have seen me or my other son, the paleness is no cause for alarm.

The reason Ezra was not yet exhibiting symptoms of ALL was because it was still really early. Typically when kids are diagnosed with ALL they have any where from 60-90% cancer cells (or blasts as they call them) present . The disease does not usually present itself till 25% blasts are found. Ezra’s were at 15% at diagnosis.

We caught his cancer on a complete fluke, and we caught it really early.

Sometimes fate has a beautiful way of interceding, thank you Mr. Spider.

So Ezra spent his 2nd birthday in the hospital receiving chemo.

ezrabday1

His bone marrow was tested a week into the chemo to see how he was responding. They only found 1-2%  cancer blasts  left. This labels Ezra as a rapid early responder, which is highly favorable. He will be tested again at day 28, were they expect to find his cancer has gone into remission.

Ezra will receive three years of chemotherapy treatment. Most children recover completely from this cancer, and go on to live a normal cancer free life.

Prior to Ezra’s diagnosis my husband and I always talked about how there was something special to Ezra. There is a light in Ezra , that not every child encompasses. His light is infectious and can put a person at ease, make them laugh, or make them cry. He is a sweet old soul, who is knowledgeable beyond his years. He is a fighter.

He will make it through all of this just fine. He has been braver than I can ever imagine myself being.

He is my hero.

11 comments:

  1. I hadn't known that his blasts were so low. The spider saved him. Amazing. Isa had 4% in the blood and 90-96% in the marrow.

    ReplyDelete
  2. Hi there,
    My son too was recently diagnosed through a lump on his head which isnt typically a symptom of ALL. He had a smallish lump which grew rapidly. Ofcourse thoughts of cancer go through your head but then you dismiss them. Then he had a biopsy as the scans couldnt tell what the lump was. Even after that they still didnt know and then referred his results onto an oncologist. We were told to meet with this lump doctor (not yet told she was a cancer doc) to see her results and thoughts. And we were sort of told it was cancer when we got lost in the hospital and asked where that specific doctor was and the lady said "oh you mean oncology?" My heart nearly stopped and i replied " I hope NOT" but unfortunately it was, and her initial diagnosis of the lump was abnormal white blood cells indicating Lymphoma, she said it was the same as Leukaemia but as its a lump its called lymphoma. But they then went on to do a spinal tap and bone marrow biopsy and there they found his marrow was 30% leukaemic cells therefore now changing the diagnosis to A.L.L
    This week is his final induction week of chemo and drugs. it was 4 weeks. Monday he is to have another biopsy and spinal to see where its at, and they too expect remission on that day. Then when results are in they move into the second phase which i have been told is appx 5mths with chemo and oral meds. Then after that phase is 2.5 yrs of oral meds till the cure.
    So my heart is with you goodluck and take care xox
    Kylie son of Zayn with ALL diag, 1/7/09

    ReplyDelete
  3. Thank you for sharing his story!

    ReplyDelete
  4. Praise God for that spider bite! I'll be praying for your family and your son's recovery. Thanks for sharing your story - Happy SITS day!

    ReplyDelete
  5. I found your blog from another and read your story. You are a strong family and I see that the Lord is already watching over your son. Flukes are what we often call the Lord's work when we don't dare admit that he is watching over us indivifually. You and your family are in my thoughts and prayers. I wish you the best and thank you for your example to all who visit your site.

    ReplyDelete
  6. Thank you for sharing your story. August 12th 2009 was the day "our world fell out from underneath us" Hugs to you and your family!

    ReplyDelete
  7. My little boy is the same age. Thank you for posting so parents can be more aware about the fact that sometimes there are no signs. My thoughts and prayers are with you and your loved ones and your very brave little guy.

    'Don't lose hope. When it gets darkest the stars come out.' (by Unknown)

    ReplyDelete
  8. You have a beautiful family and you are all in my prayers.

    ReplyDelete
  9. Praying for Ezra! Our son CJ has Acute Lymphoblastic Lymphoma. He was diagnosed at 9. We had the same experience in that CJ was different from our other 3 kids. He was special in a deep sort of way. Very spiritual and sensitive. Although devastated we were not shocked it was happening to him.

    Our oncologist said, I know it feels like the floor just fell out from beneath you, but I promise you it will start to come back up. What he failed to mention was that the floor would be a new floor, and very unlike the old. I imagine your new floor has begun to come up as well and your footing is more sure. This floor will take you to places you could never have imagined. Joys and sorrows you could never have fathomed the depths of.

    But there are lots of us on this floor with you.
    Blessings to you and your sweet family from ours

    The George Family
    for "CJ"
    www.georgefamilyblog.com

    ReplyDelete
  10. Wow..thanks for posting on Ezra. My son Sven (5) has ALL as well was diagnosed on 4/19/09. What makes my heart warm is knowing that we all felt the same STRONG special something about our kids before they had been diagnosed. I think we will all see Greatness in these lil ones that endure so much but still make us smile on the darkest of days!

    Sarah
    http://svenscancer.blogspot.com

    ReplyDelete
  11. He is a beautiful little boy. There's something about that face.

    ReplyDelete