Echo of Heart


IMG_1692Can we really already be out of options?  Is this really all we’ve got?
I feel like I’ve been told three times my child has cancer.  The first time was terrifying – we had no idea what we were in for but we were prepared for whatever we had to do.  The second time we knew what lay in store but our options were far diminished and came at a much greater cost.  Yesterday evening when Dr. Chow told me that the blasts in Allistaire’s blood were leukemic, I simply nodded.  We’ve given her our big guns chemo.  The only options left are experimental.  She cannot have an active infection.  Clinical studies may have limitations regarding the cancer in her skin.  Dwindling roads, narrowing, constricting spaces.  Today was a choking down of the blank future before us.  My heart kept tearing, like a carcass being torn by a wild animal that is only set to devour, unconcerned with the life blood of it’s prey, spilling.  The bathroom was my only private sanctuary where the sobs kept coming.
All I wanted to do was soak in Allistaire.  I did not want to waste time with any other activity.  Yet at the very moment I yearned to come close to my beloved and delight in her, she raged and raged.  Allistaire thrashed and roared like a wild, insane animal today.  She cried and screamed and grabbed at her hair, her legs, her arms.  She seemed utterly out of her mind.  I could not stop the tears.  She seemed already gone.  In the midst of the stormy day the Lord provided a number of kind faces and voices and hugs.When at last Allistaire was still beside me this afternoon and I starred at the cardboard birds hanging from the ceiling, I thought how lovely to have 2 hours where no one comes in the room.  What coveted quiet.  I let my mind wander and pick scenes from days gone by.  I watched Allistaire in my mind, running through our house, pulling the sled, laughing, squealing.  Silent, hot tears streamed.  I felt the ache of regret for the many times I was impatient with her, unkind and demanding; wishing I’d dealt with her more gently.  Times sweet and times broken.
Near the end of her two-hours Ribavirin dose, Dr. England, the Infectious Disease doctor stopped by to discuss the plan for Allistaire regarding her RSV infection.  Her goal is to have most of the virus gone by the end of the 15 doses which will be Wednesday night.  In addition she doesn’t want Allistaire to be “sick.”  I asked her what she meant by sick, given that the virus will be in her system for weeks. Apparently she should be off oxygen, which fortunately has never been necessary for Allistaire.  She wants her oxygen saturation to be over 92% and ideally as close to 100% as possible.  It has remained in the high 90s much to my joy.  Also, she doesn’t want to see any progression of symptoms.  So far she has only had a slight cough and a tiny bit of a runny nose here and there and things have certainly not progressed.  Like the streptococcus infection, RSV commonly results in being in the ICU for AML patients.  I feel extremely blessed with how well Allistaire’s body is holding up.  To use Dr. Ho’s words, “she has a very strong underlying immune system.”  Thank you Father!
Dr. Ho also came by to let me know that Dr. Pollard is planning on meeting with me tomorrow to discuss a specific clinical study she has in mind for Allistaire.  She is in communication with the clinical study chair and it has been determined that a CT scan will be necessary to determine whether or not the RSV infection is in her lungs.  If the CT scan confirms that she only has upper RSV infection, her RSV will not prevent her from being eligible.  Because her bone marrow test is scheduled tomorrow at 9:30am, and this along with a CT scan requires sedation, they will wait until later in the week or the beginning of next week to complete the CT scan.  I do not have any details about the clinical study and don’t know at this point if there are other elegbility requirements in question.  Results from Allistaire’s bone marrow test may come back as early as tomorrow afternoon though more likely on Wednesday.  Sten and I will meet with Dr. Pollard on Thursday to continue the discussion regarding what options are available for Allistaire.At last, this news of even a possibility, it was a bright spot in the day; the sort of ray of light in an angry cloudy sky.  What a gift.  I have learned along this journey that every single step forward is absolute, literal gift – because you might easily not have it.  Lungs that breathe.  A heart to pump.  Kidneys and a liver and blood vessels and blood cells – on and on it goes. Gift.  Mercy.  Grace.
Another dear gift I received today, was the opportunity to read the words of Rachel – mother of Olivia.  I met Rachel and Olivia when we were first here in December of 2011.  Olivia, who is only a few months older than Allistaire, had just had a transplant.  Rachel, with her cute red hair, super short from having been shaved, she and I marveled at how similar the two girls were.  Today I marveled at how similar Rachel’s heart is to mine.  It is a gift to have another voice, articulate the same experience, joys and woes.  With Rachel’s permission, I share with you her heart, that so well conveys my own.  Her blog is
“Social media sometimes makes stark the contrast between the world I once knew and the life I know now. And for that reason, I often avoid it.Because everyone else’s problems will pale in comparison to the image of the mother cradling her dying child. The child she is watching suffer through a lingering and painful death. The child she cannot not save. Soon, she will die a little too, though her breath will betray her. And then there is so and so lamenting frivolous things; colds, messes, prices, commutes. This applies to me too, as I struggle with the idea of creating some space between myself and Olivia – ie: getting her back into her own bed – as grieving mothers sleep where their child once slept just to feel close to them again. And I feel ridiculous. It seems absurd that these fates can exist in the same time and space. That a dear friend can be tasked with placing her child’s ashes in an urn while others play under a sun whose warmth some will never know.

Reality is seeing the school bus drive past our house and then wondering if Olivia will even reach school age. It is living life in monthly increments, enjoying our longest stretch with no lab work since diagnosis, but also knowing that the next time a needle slides into her arm, that vial of blood and the hours that follow might literally contain my greatest fears realized.

Reality is looking in the mirror and seeing a hurt that has aged me beyond my years. Knowing that time can not erase one iota of the pain as it merely settles deeper in my bones. After 33 years I often do not recognize myself. I feel as though, at all times, I am waiting for something to happen.

Reality can be so very hard.

When the unthinkable happens and the grief is greater and the burdens somehow heavier than before. If you’ve ever experienced a traumatic life changing event, then you know what I mean. There is the before and the after. These defining moments, these deep cuts, they are incapable of healing. They may scar over as time marches away with what once mercilessly ravaged or they may be ripped fresh as that burden of fear becomes realized in a surreal yet familiar sort of horror.

As they have for Olivia’s little friend from the hospital. Her friend, just a few months younger, who sucks her thumb and loves her stuffed dog. Sweet Allistaire’s leukemia is back. It has infiltrated her skin. Her skin. As I read the words written by her grieving mother, I knew what seemed familiar, the sinking and despair; utter disbelief that this should be life for anyone, let alone a not yet 3 year old. The first cut is deep but anyone who knows cancer knows that the second cut is deeper still; and though that fear weighs heavy on my own heart, I do not personally know it. I do not ever want to know it. I simply ache as Allistaire and her family must begin again. My own head spinning at the quickness with which normal routines and comforts cease and life becomes a moment to moment affair; some days just struggling to get through. Grasping. It is all so terribly unfair. Allistaire’s mother is a woman of great faith. She is grace exemplified. I really do admire her and have found her chronicling of their experience to be inspiring. Her words have scraped me off of the bottom on more than one occasion, shining perspective and comfort in the doldrums of disease and treatment and recovery. How someone in the midst of her own confusion and sadness can lift others up…..well, that is a gift.

Please keep them in prayer. Please pray that the decisions made by Allistaire’s doctors are the decisions that will lead to her cure. Pray for peace and light in the valley.

As her mother said, it will be longer and harder this time. The search for a bone marrow donor has commenced. I ask that any eligible person reading this who has not yet registered to become a donor, please do so. You can register with DKMS or Be The Match. It’s easy and free to you. The potential to save a life is very, very real.

This is reality for so many. This and more.

I waffle between wanting to bury my head in the sand and needing to face my fears and worries head on. Ultimately hiding from reality would be like hiding away bits and pieces of Olivia; denying her truth and diminishing the gravity of her experience. This part of who she is. This part of who we all are. The problems swept under the rug eventually surface and they are only messier when they do. It would also make a gigantic hypocrite out of me as I have pleaded to you all to not turn the other cheek, to be brave enough to stand with us. To fight for these kids. To throw money our way in the name of what some say is impossible. And so many that could have turned away from us did not and have not.

So I will keep looking and reading and knowing that though these children hold the enormity of my worry and my fears they also hold my hopes and my dreams. Reality at its most harsh and relentless set out before our most innocent.

As my head has been aching, all day long, these past few days, I realize how much hurting and sadness I am carrying around for this family. And for my own family. My own self. Perhaps it is because I know them, sort of. They are not just pictures or words on a screen. They could be us, as we all lived out this reality behind those same closed doors. I knew Allistaire briefly before chemo took her blonde curls; in that small space between diagnosis and treatment, when everything is spinning out of control. I wondered at her hair when I first saw her in the halls. Hair kind of makes you stand out in an oncology ward y’know? Was she new? Had she relapsed? Was she just visiting a sibling? She was the only other child close to Olivia’s age that I had seen in a while – most others were much younger or older or were living in isolation. Her mother and I marveled at the many similarities between our two girls; mannerisms, appearance, diagnoses. I suppose we may have resembled a frightening glimpse at their road ahead. When bald heads and feeding tubes and IV poles are still unfamiliar things. I remember trying to seem reassuring; explaining that the little ones often do so well with chemo, just as Olivia, sitting happily on her trike on her transplant day, vomited all over the place. Perhaps it is my selfishness, or humanness, that makes their reality seem a more viable possibility down our own road. This thing you cannot run or hide from, no matter how faithful or full of grace.

I have been reminded these past few days that even as reality can become quickly and nearly unbearable, “faith looks up”.That even as the path becomes so uncertain, there is Grace abundant that holds to no earthly bounds. There is Glory to be proclaimed. Beauty in the hurting.

There is hope.

You need only to look up and be reminded that this reality is fleeting.

Earlier today I unpacked a daily devotional that I used to keep next to my bed. I had the following page bookmarked. I guess I needed to see it again on this day.”

TRUST ME, and don’t be afraid. Many things feel out of control. Your routines are not running smoothly. You tend to feel more secure when your life is predictable. Let me lead you to the rock that is higher than you and your circumstances. Take refuge in the shelter of My wings, where you are absolutely secure.

When you are shaken out of your comfortable routines, grip My hand tightly and look for growth opportunities . Instead of bemoaning the loss of your comfort, accept the challenge of something new. I lead you on from glory to glory, making you fit for My kingdom. Say yesto the ways I work in your life. Trust Me, and don’t be afraid.”

~Sarah Young, Jesus Calling

11 responses »

  1. That perfectly sums up why I have avoided social media. When I obsessively check my friend’s blog for updates on her tiny daughter who is being ravaged by cancer, saying anything frivolous on Facebook feels profane. I continue to lift you up, even as I no longer know what to pray for. I continue to weep for you, as though my tears my lessen your own. My heart hurts for what I cannot change, and is challenged by what another friend, struggling with infertility, was told by God: “Trust Me. If you knew the ending, you would choose this too.”

    I have to trust that. To trust His goodness, even if He says no. I pray blessings and healing on you all, and I’m kinder to my children as well, as I keep vigil with you in the night.

  2. Your posts never cease to cut me and bring me back to the true reality of what our fight really is. Praying praying praying. We are sending a package your way in the next couple of days. Hope it will bring you and Allistaire some comfort. Can you watch DVD’s? If not, google Charlie and Lola and watch the episodes on Youtube. She will love them. Also, would you prefer music CD’s over sending you the music via iTunes for the iPad? Our fav Apps for the iPad are everything from Duck Duck Moose, The Beginners Bible, and Disney Junior. We love love love you all.

  3. Dear Jai, Sten, Allistaire and Solveig,
    My heart is filled with saddness as I read your words and those of your friend. I am thankful that Allistaire’s symptoms from the RSV are not severe and continue to pray and trust that His plan for the next step will be made known and provide peace and assurance. In His love, Joe and Bethel

  4. Though we haven’t met, I am praying and praying for you and yours, through many tears. In your weariness, it is our privilege to pray even more and to help you keep “lifting your eyes” to the One whose grace IS sufficient–for this and every moment. Hugs and prayers.

    I lift up my eyes to the hills. From where does my help come? My help comes from the Lord , who made heaven and earth. He will not let your foot be moved; he who keeps you will not slumber. The Lord is your keeper; the Lord is your shade on your right hand. The sun shall not strike you by day, nor the moon by night. The Lord will keep you from all evil; he will keep your life. The Lord will keep your going out and your coming in from this time forth and forevermore. (Psalms 121:1-3, 5-8 ESV)

  5. Im 7 yr. Friend with youf mama in bsf… I started a fight with totl body an severe strange hdy say skin can er in 2006,after bone cancer in 1999…then in 2011 same as ali i got rare merkle cancer fought it hard with radiation and much hemo. Ended in 2012for a few months… Then the skin cancer came back 100fold in strength an pain.. I been on daily dose of zeloda since last may.. With no off time. Now fatigue is so bad ask mama…. I only get out of bed an leave hm for dr appt. And praize our Lord my bsf. Without that id loose my mine so dear i know… And i been praying since kathy first shared with me.. I dpend my oirs shut in with thee Almighty in study and prayer. Im praying my hardest dear onr 4 the wee one and you, and rest of fam. God knows rest in Him… Im so glad you are his child. Consider abraham and issac. My love and prayers always sweetone. Hang n. Im praying for devine healing jai.

  6. Jai, my heart is just aching for you and Sten and for the girls. Jesus please let your comforting presence be known by this sweet family!

  7. God continues to put your family in our heart and mind collectively. We are praying daily unsure of what or how to pray exactly.

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