Monday, August 14, 2017

Relapse

(one week before relapse)

We didn't see it coming.

I had trained myself so well not to panic that I didn't flinch when I saw a few light bruises on her last week. After all, she had massive bruises before and her counts had been fine. Most kids relapse the first year off treatment and Grace was well past that. We thought we had dodged the bullet, even though her aggressive form of  PH+ leukemia has a 25% relapse rate (which sounds great on paper but it also means one in four kids relapse, which suddenly sounds not-so-great).

I was so encouraged by her oncology visit two weeks ago. Her blood work was perfect and when her oncologist told us, "It's time to move forward with your lives," I was entirely ready to leave the cancer world behind us. And that was a big step for me, to let go of my fears of relapse and to move forward with "normal" lives. I wanted that so desperately for our family.

Sunday night she woke up crying that her arm hurt. I gave her some Tylenol and took her to the ER. By then the pain had lessened and she told me she wanted to go home to sleep. So we did, but Chad and I were both deeply unsettled by it. Bone pain is one of the major symptoms of leukemia. In the morning she woke us up crying that her arm hurt, her stomach hurt, her foot hurt. We called the oncologist at Children's Hospital and they got us in that same morning. I packed an overnight bag, just in case.


"You know already, don't you?" the doctor said to me when they had the blood work results. Her platelets were at 33k and they found 11% "blasted cells," or leukemia cells. The doctor held me while I sobbed. The nurses watched the kids while I called Chad and the family. These were some of the same nurses who sang to Grace when she rang the "finished treatment" bell a year and a half before, and they had hugs for me as well.

When Chad arrived we told the kids. Grace first wanted to know if she would die, and then if her hair would fall out, and then if she could play with the new Legos her daddy brought. And in less than a minute she was settled with the news. Luke was similarly receptive.

It's been eerie how quickly we all fell back into the cancer lifestyle. At the hospital, surrounded by nurses and doctors and other families we know and love, it almost felt normal. Like an extension of her last cancer. It didn't really hit me until I went home Sunday night to spend time with Luke and sleep in my own bed...and Grace and Chad weren't there. That's when I knew it was real.

Even still, it's a fleeting knowledge because "cancer" is a term, not a tangible thing, and refuses to be understood as such. It's almost always like that. Talking to her oncologist about her chance of survival seemed subdued. Buying new headbands for her soon to be bald head felt like a funeral. It's in the details that cancer becomes an understandable reality.

When I do grasp some little corner of understanding, it comes hard and fast in the most unexpected places and times. In Target today, buying decorations for Grace's hospital room, I was nearly knocked breathless. But before the emotions reached my face I had it back under control. Which is good, it's a coping mechanism necessary for cancer parents. Also it's bad because late at night when I try to unravel the knowledge of it, I can't. The emotions don't obey my will, they come when they want and it's almost always at a time when I can't let them.

In Celebrate Recovery and through therapy I had to learn how to cry again. I had become too good at controlling my emotions, the first time Grace had cancer, until I had deadened them completely. I've since learned that having emotions is an important part of being human. I am trying to balance that knowledge with the reality that I don't have time to feel every feeling because my life isn't just about me, it's also caring for my two highly stressed-out and suffering kids. So I know that there's time to feel sad but there's also a time to put on big-girl-undies and laugh in the face of fear. Which is also a critically important part of being a cancer parent.

Grace needs me to model both for her, so sometimes I let her see me cry and sometimes I make silly faces instead. And who's to say what is too much and what is too little? The CHLA therapist tells me I need to worry less if I'm doing it right, because there is no "right" in this situation.


There's nothing right about kids having cancer...but still goodness is here if we look for it, which is also a critically important coping mechanism necessary for cancer parents. I find it in the love of our friends and family, in the care of her medical team, in the love Chad and I have for our kids and they for us, and in the love of God. It's those moments of goodness we will hold onto when things get hard.

Anyhow...I have to get to bed. I rarely have alone time and at night when I stay up this late (10pm) we inevitably have a thousand wake ups. Goodnight friends.

13 comments:

  1. I am so Sorry that Gracie and your Family has to go through this again! My Heart hurt's for all of you, and I Pray that God will help all through this and Gracie will be cured again!Love,from Shakopee Mn.

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  2. So grateful for your honesty in sharing. Sending love and praying for you all, knowing that the Lord will continue to provide whatever it is each of you needs in the moment you need it.

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  3. Melissa and Chad, we love you.

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  4. Like the other Unknown, my heart aches that you are going through this all over again. I daresay there are lots of prayers being said for you, Grace, Chad and Luke--you are certainly in mine. Much love to you all. Christine in Minneapolis

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  5. My heart aches that you are having to go through this again...you, Grace, Chad and Luke are in my prayers, as well as many others. Much love to you and your family. Christine in Minneapolis

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  6. Well written. Our son Nick had a relapse 6 years after treatment, after the 2 year bench mark, we considered Nick cured. It was surreal to find ourselves with the same nurses and doctors, finding the battle again. Unfortunately, cancer took my son the second time. I pray for you Grace and wish strength to your family.-

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  7. It's hard to put into words how terribly sad and hurt I feel about what's happening to Grace,you and your family. But for the grace of God goes we.
    My sincere love and prayers go out to all of you. I've only met you once,but I feel much closer than that. May God's healing hands be laid upon Gracie and His love and peace be with you.

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  8. So touched and encouraged by your honesty, faith and strength! Our family has been praying daily for Grace and all her family since we learned of the diagnosis. We continue to lift you ALL up prayer daily! Without ever meeting, know you are a loved sister in Christ across the miles. ����

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  9. Hi Melissa, my heart is with you at this time, I understand you as after 2 1/2 years of our son being chemo free,last year he had a relapsed leukemia...Cancer threw its monkey wrench on our lives again and we had to go back into treatments. I remember walking on 4E for the first time and seeing the sadness on the nurses's faces as we walked by to our room... I do want to tell you that it sucks big time!! allow yourself to cry and scream, allow yourself to feel the moment as that is all we have as humans.... I also wanted to share with you that our Dr. is David Freyer, he put Nathan on a clinical medicine called immune therapy, Nathan did three rounds of this, each lasting one month, side effects were very minimal in comparison to chemo, he felt fine, his hair grew in, his counts were good, no blood/ platelet transfusion needed on those cycles. you might want to look into it for your Gracie.

    Please feel free to contact me anytime to talk.

    (((Hugs)))

    Ziva
    email me and I will privately share my number
    nathansfight@ymail.com

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  10. Hi Melissa, my heart is with you at this time, I understand you as after 2 1/2 years of our son being chemo free,last year he had a relapsed leukemia...Cancer threw its monkey wrench on our lives again and we had to go back into treatments. I remember walking on 4E for the first time and seeing the sadness on the nurses's faces as we walked by to our room... I do want to tell you that it sucks big time!! allow yourself to cry and scream, allow yourself to feel the moment as that is all we have as humans.... I also wanted to share with you that our Dr. is David Freyer, he put Nathan on a clinical medicine called immune therapy, Nathan did three rounds of this, each lasting one month, side effects were very minimal in comparison to chemo, he felt fine, his hair grew in, his counts were good, no blood/ platelet transfusion needed on those cycles. you might want to look into it for your Gracie.

    Please feel free to contact me anytime to talk.

    (((Hugs)))

    Ziva
    email me and I will privately share my number
    nathansfight@ymail.com

    ReplyDelete
  11. I've met you(all) only in cyberspace, but I'm glad Grace beat cancer in the first round and participated in this blog all these years. I'm praying for the whole Team Grace Ellen.

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  12. Hi Melissa and Grace! This is Natalie Mitchell, Kingston's mom from WVCS. We want your family to know that we are praying for all of you. We are praying for your strength and Grace's recovery. We are all here for you. Many hugs!

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