Getting Harder

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Sabbath rest now.  That is what He is telling me.  You have what you need and you are able to rest, right now, right here.  The wind whirls and shudders and shakes and the sky is storming black and angry and I want to scream back in utter fury – where is your rest?  Do you see what is happening here God?!  Do you see me?  Do you hear me?  But I am spent.  I do not scream.  I can barely speak.  I sit.  I crumple.

As of this evening, her eyes have taken on red half moons that encircle the lower lids of her eyes.  Tonight she looks more like a cancer patient.  She stood and walked early this evening for the first time in a week.  She awoke early from her nap, called her nurse by pushing the big red button and then walked to the door to see if she was coming.  I was astounded and excited.  Maybe an hour later, Ange, the fellow came by to give us the MRI results from today.  I’m realizing now I haven’t shared the most recent development.  On Friday, during our radiation consultation with Dr. Ermoian, Allistaire complained about pain in her right leg (it was in her left leg that she originally had pain and where the biopsies were taken).  We assumed it was perhaps because her leg had gone to sleep while she lay in my lap.  Unfortunately she continued to express pain and so yesterday we discussed the need for another MRI.  So this morning she had the MRI and the results showed what appears to be more cancer, this time in her right leg, as it looks akin to her left leg.  Additionally, there appears, on the MRI, to be a possible spot on her upper right chest.  This cancer is moving frighteningly fast.  In just a few days these new places have popped up.  Sweet Dr. Ermoian has been in contact with the Hem/Onc doctors over the weekend, still thinking through Allistaire’s situation.  On his memorial day weekend, he has continually considered my daughter.  With this new development of additional locations of cancer, he said that he is now considering TBI.  TBI is total body irradiation where the entire body is exposed to radiation.  TBI is part of the conditioning regimen of the cord blood transplant that the doctors originally wanted Allistaire to have.  I asked if TBI was allowed as part of the transplant protocol and the fellow said that she didn’t know but that she assumed that if Dr. Ermoian brought it up, it probably was.  I want Allistaire to have the intense therapy she needs, if she needs it, but it is nevertheless so frightening considering the side effects, both short and long-term.  I don’t know much, but I know enough to want to throw up at the thought of her having to go through that.  It hurts my heart so much.

On top of all this terrifying speed of her cancer in her flesh is the rise of blasts today in her blood.  Today her blast count was 150.  She cannot have blasts over 10,000 and still be enrolled in the clinical study.  Sadly, blasts are a bit exponential in their rise, so while 10,000 seems far away now, it is entirely possible.  She has only been on the hydroxyurea for about 5 nights, but as of tomorrow, they are adding a second chemo, decitabine, which she will receive each morning.  Of course the hope is that this will sufficiently suppress her counts.  Interestingly, along with her blasts, her other blood lines, her ANC and hematocrit, have not dropped much either.  We’ll see.

Nearly every night now, I go to bed with the deep sensation of nervousness, often accompanied by eyes that sting and are weighty from crying.  It is hard to want to start the day.  When I awake, I lay there, realizing I have to face the unknown of another day.  Things are moving so fast now that from morning until night it feels as though the whole earth can sway and shift.  There is ever the background noise of high-pitched tension.  It rings incessantly in my ears, in the thick of the back of my skull.  Sten is here and we try to find enjoyable things to do, but everything is turning bland.  We struggle to have something to talk about because everything connects back to this.  Everything is stated according to the bar of if Allistaire is alive, or if Allistaire dies…It feels like everything is about to crash down around us.  The escape route is narrowing, and I am frantic to get there.  We are so close but it is still ever so very far away.  Our throats feel the constriction, the tightening, the squeezing and pressing in and down.  I was hungry but didn’t want to eat.  I knew I needed to eat and so I forced the food in my throat.  The food kept catching as I tried to force it down.  Allistaire looks at me with those tender, searching eyes and asks why I am sad.  I don’t speak.  I just kiss the warmth of her skull over and over.  I wrap my body around her in the bed and I ask how long do I have with her.  I walk the halls and I am literally flabbergasted that this is happening.  I am both present and not – I am merely looking in, not seeing that this could really be us.  The nurses and CNAs are so sweet and gentle.  They sincerely love us and I know they are desperately rooting for us, hoping with us that somehow we will make it through.  They are grieving with us.  Ange, the fellow, said that she is on call and we can have her paged any time in the night if we have questions, her green eyes pools and caring.

I don’t scream at God, I am too undone, too exhausted.  In weakness of voice,  I cry, “Father God, have mercy.”  I feel unsteady as I walk, often wanting to cave in against the hallway wall.  No matter the long view of this, my heart is being torn and ripped.

“Listen to me, O house of Jacob, all you who remain in the house of Israel, you whom I have upheld since you were conceived, and have carried since your birth.  Even to your old age and gray hairs, I am He, I am He who will sustain you.  I have made you and I will carry you; I will sustain you and I will rescue you.”  Isaiah 46:3-4

When I read this passage two years ago, my immediate gut response was, “Fuck you God!  I don’t want to be carried!  I want you to fix me!  I don’t want to be broken anymore!  I am sick to death of being finite and broken and a wreck.  Can’t you just come fix me, so I can be done with this weakness?!  I don’t want to keep needing to be rescued – I want to stand on my own two feet and walk.  Almost as immediately, came swooping in the sudden shocking awareness and conviction that I did not really want God, I wanted what He could give me.  Ultimately what I wanted from God, was for Him, in His power and perfection, to make me perfect so that I could be self-sufficient.  I did not want to need God.  I wanted to need no one.  I wanted to stand in my own strength.  Weakness and dependency were revolting to me and I wanted nothing to do with them…until that day that I shook my rebellious, furious fist at God and how swift and glaringly clear was His response.  In the next moment I realized that God wants me, more than anything else, to be in relationship with Him, that is His ultimate aim.  I saw in that moment that the purpose of Christ’s death was not to make me righteous.  The purpose of Christ’s death, was to make a way for me to be in relationship with the Living God.  Righteousness was necessary to pave the way to God, but it is a means, righteousness is not the end.  I felt the Lord smooth my brow and I saw that He had dealt with my sin, once and for all in Christ – now I could rest.  Now I was invited to see that my neediness was in fact gift because it was the means by which my eyes would be opened to see God and abide in Him.  God called me to something so much more glorious than having my sins simply washed away.  He washed away my sins and put them as far away from Himself as the east is from the west, because above all, He wanted to free me up to rest in Him.  Dependency went from repugnant to glorious.

There is weakness and brokenness and wretchedness all around me.  And I call out to the Lord to heal my child. Oh how I long to see her healed in this life and to always have her with me.  And at the same time I hear my Father entreating me to rest in Him.  He invites me to be carried by Him.  He promises to sustain me, in Him.  He, Christ Jesus, is my life blood.  I am needy.  I am tethered.  And where once I thrashed and struggled and raged and cursed to be freed of my finiteness, now I yield.  Now I sit down in my Father’s lap.  I cry and I mourn and I ask Him to give me eyes to see.  And that is His promise to me, that through this horror I will see Him – this “seeing through to God” place.  Ultimately, God values us knowing Him above all other things.  This feels utterly offensive.  It feels like a belittling of the value of my child’s life.  That is one way to see it.  But God’s audacious promise is that this pain will be worth it.  In the long view, this cutting, ravaging pain emphasizes and clarifies the immensity of God being more clearly seen for who He is.

Father be faithful.  I end this night in weariness.  I am ever so in need of you to come to me and care for me.  I need you to carry me.  I have no strength left.  I abide in You because You abide in me.

33 responses »

  1. Ok, now I know this is from the Lord – I got on my computer just now with the purpose of writing you to see if I could get an address from you in Seattle (I have something I’d like to send you) and the first thing I read is your comment!
    I’m so sorry this is such an excruciating season, please know I pray for you guys all the time. Just again this morning in fact. I hope one day we can meet face to face!
    My email is saramcnutt@gmail.com – do you mind sending me an address I could send something to?
    Will be praying and lifting you guys up in prayer. Your words have impacted me more than any other blogger. The Lord has given you a gift and I’m so thankful you’re letting him use it and refine you in such a season of pain.

    • Thanks for your sweet, understanding prayers Sara! And yes, I look forward to meeting you one day too! The hospital address is: Seattle Children’s Hospital, Attn: Allistaire Anderson, 4800 Sand Point Way NE, Seattle, WA 98105
      Much love to you!

  2. Faithful father, come. Carry Jai. Give her peace. Give her comfort. Lord, you’re gracious and good. Please be near. Amen.

  3. I continue to hold you and your family up to our Father, not understanding and unable to comprehend his plan…words are inadequate and yet in your struggle you are helping me see more of Him

  4. It is relentless. Feeling so much intense emotion all.of.the.time. It is draining and hard and relentless. I read your post after I rolled out of bed this morning and as usual, you took familiar feelings and gave me a lesson in faith. A few hours later, I was rifling through my wallet, looking for a business card, and I found this small piece of paper that has written on one side this: “The Lord is my strength and song, and he is become my salvation.” Exodus 15:2 and on the reverse side, this: God is with thee in all that thou doest.” Genesis 21:22

    This little fortune cookie looking piece of paper that I found when I was wandering around the oncology ward in an emotional daze. Having been ‘up to here’ in sadness and hurting for my girl, and for all of the suffering around us. This little paper was sitting in a corner, on a table, in that little family area by the bikes. I found it and read it that day, a few weeks into the transplant process, and in my wallet it still sits. I think it found its way back into my hands this morning for a reason. I don’t know. It brought me some impossible comfort back then. I thought, maybe not today, or tomorrow, but it will be okay again. Someday.

    I’m praying that the door stays open, .

    • Thank you Rachel – I love that in the middle of the truth that God is my strength and my salvation, is the truth that He is my song – that get’s to be our response – not just facts and truths about God – but our joy and hope and yearning for Him. Thank you for all your love Rachel – it means so much to me – I only wish we weren’t so bloody far apart 🙂

  5. [I am a friend of Addie’s who has joined her in praying for you for the last few months] I read your post today and tears streamed down my face and I cried out, “Lord, have mercy!” and then as I kept reading, I saw so much evidence of his mercy to you, just not in the way that I want. I am humbled and so weak even in knowing what to pray, and so I will just keep praying for you, “Lord, have mercy.”

  6. Oh Jai, I am standing in the in-between for Allistaire, pleading with God for her well being. Interceding. I am lifting you and Sten up to our Father – strength, courage, peace, wisdom, guidance. I know all of these words are but a small consolation… My dad shared this verse with me, I’m passing it on. “The Lord blessed the days of Job more than his beginning.” Job 42:12. I pray this God for sweet Allistaire – Jesus, have mercy! Father Allistaire needs your hand upon her now, bless her days… Lord, hear my prayer! Much, so much love to you Jai.

  7. tears are flowing this morning Jai. I hurt with you. I know what you are talking about. We felt the same way. I know its also not the same, because we did not have to go through this fight for as long as you have. It hurts, its empty, you are empty. I know what it feels like to have nothing to say. To feel so heavy, hurting, unable to take this away. Wanting to feel strengthened and full of joy. Not wanting to miss what the Lord has in this. Fearing what the doctors will say next. Not even able to pray. We are the other end are interceding for you on your behalf. I want to hug you guys and hold you and sing with you. Prayers to help lift your soul in the moment. Keep breathing, keep looking to the father. He is here. He is in the empty pits with you. Praying for rest. Thinking of that David Crowder song on the CD I gave you-
    “Oh great God give us rest” God be ever so near!!!!!
    Rhonda and Jason

  8. Open yourself fully to My transforming Presence. Let My brilliant Love- Light search out and destroy hidden fears….as My Love soaks into your innermost being. Enjoy My perfect Love, which expels every trace of fear.

    John 4:18 (AMP)

    Sending our love and prayers daily,
    The Mullikens
    Bill, Heidi and Sam

  9. I continue to pray for healing for sweet Allistaire and for strength, hope, and peace for you and Sten and Solveig. My heart and thoughts are with you.

    Psalm 27:13: I would have despaired unless I had believed that I would see the goodness of the LORD In the land of the living.

  10. Jai!! I just clicked on the link for your blog from a friend on Facebook not having any idea it was you and Sten. My heart is breaking for you and for your precious little girls. I am praying for you for peace. “The same God Who was with you then is with you now; The same God Who led you in will lead you out…just keep holding on…” With love and fervent prayers for Allistaire

  11. Dearest Jai, I have been following your blog since the beginning, riding the emotional rollercoaster of sweet Allistaire’s journey. My women’s Bible study group here in Oregon read the passage in 2 Kings 6 where the king of Syria sets up an ambush against the city where Elisha is staying. Elisha’s servant says to him, “Oh no, my lord, what shall we do?” It is Elisha’s response I have claimed for you, Sten, Solveig, and Allistaire:

    “Don’t be afraid. Those who are with us are more than those who are with them!” 2 Kings 6:16

    Love and prayers always ~

    Terry & Bill

  12. My heart aches for your whole family as I can only begin to imagine your pain. We keep you deep in our prayers and continually hope for better news. We pray for you and Sten as you face each day and that Allistaire responds to the next steps for treatment.

  13. I am a deacon at your parents church (GracePoint church formerly Silverdale Baptist Church). The leadership has been keeping up with your daughters situation as information is pass along, we are all praying for Allistaire and the family. Your mother gave me this blog address. Will you be ok with me sharing this blog on Facebook as I ask for expanding the prayer chain to my friends? I will understand if you want to limit the exposure but only say the word and I will share it. Praying hourly.

  14. I’m so so sorry Jai 😦 Praise Jesus for how you continue to look for Him in all things. You are such an encouragement to me in many ways-you have no idea. Please know that you are on my heart and in my never ending prayers for peace and rest for your darling girl as well as the rest of your family. I’m constantly reminding myself that God’s timing is perfect…and He’s faithful always.

  15. To all of Allistair’s family, trust in God that His will be done. He will support you on your journey in any outcome. No one knows or understands why a little precious child has to endure so much pain and discomfort. Also, no one knows or understands why parents and siblings have to face the unknown of such a long trek into the medical crisis of their tiny helpless young child and sibling. You have my prayers to keep your strength and faith as you continue to love Allistaire into the unknown future.I won’t try to pretend to understand the agony your hearts are experiencing because I have not walked in your shoes. I will continue to remember you in my continual prayers for God to give you ahelter in this storm. God bless and keep you as you travel this path into the unknown.

  16. My heart is ever with you. Lord, have mercy. We are so broken. So tired. We need you desperately. Fill us now, fill Allistaire. Bring grace upon grace, comfort upon comfort, and wisdom in the mess.

  17. Jai, you might not remember me from TMC but I remember you both and my heart is aching for you. I have a little girl just a month younger than Allistaire. I am thinking of and praying fervently for you all. You are on my heart!

  18. Dear Jai: We pray every time we think of you…which is almost constantly. The Lord brings you into focus throughout the day…I thank the Lord for pulling me out of my self-centered float through life to experience His sovereignty through your precious words. I was deeply touched by your description of wanting God to end my weakness rather than invite me to walk in him. I read it and re-read it. You put into words what I have been trying to understand…you helped me…you blessed me. Thank you for reaching out and teaching others while in the midst of the worst pain any mother can imagine. The pain in Allistaire’s little face shoots through my soul. Oh Lord, grant us a miracle…grant us a miracle. We love you sister. Tammy and Kelly Hall

  19. Dearest Jai,
    I c you, i hear you, i know you, and because of what our Father allows me to at times c i will do your praying while you rest. She needs you strong… That only our Abbas REST CAN BRING YOU”, “SO SLEEP NOW MY CHILD, FOR I AM NOT ON CALL I AM IS EVER PRESENT. I AM IS HOLDING YOU, JUST GIVE IT TO ME, LEAVE IT WITH ME, AND REST IN MY PEACE.”

  20. Jai, i should explain, i was txt u when Abba desided to add a p. S. Of HIS OWN to you. Im loving you and cradling your painful heart and soul in PRAYER. YOU WILL MAKE IT SISTER, I KNOW IT, UR GODS CREATION, U WILL NOT FAIL CUZ HE DOES NOT FAIL. JUST KEEP HOLDING TIGHT. U PROBABLY WANT TO SCREAM OUT… HOW DOES ANYONE KNOW. WE DONT! HE DOES. I COULDNT C PAST MY CANCER 2YRS AGO. I STILL HAVE 3yrs to go for just out of the woods. I live day by day… Knowing He could come for me anyday. I think of it like if HE does… To my believing loved ones im just on holiday, theylll see me soon enough. Jo

    • Oh jai, i 4got to say, on the facebook to matt. Ok. I did likewise…. Its a believers sight mostly. But unlimitly its in Gods hands, whos heart He wants to reach. My being sick reached so many, what with chem, rad. And two yrs of monthly checkups an quarterly cscans. I try share everywhere i can. Its all about saving the lost for the REAL TIME ETERNAL PARTY. IF U HAVENT READ THE SHACK. GIVE IT A LOOK. IF HAD it on shelf 4 2yrs. Just this week Abba said get it, read it, i cant put it down. Joette.

  21. Just another note to let you know we are sending our prayers and thoughts to you every day, Jai. I ache for you and yet you inspire me with your words and your strength of spirit. God is holding you through this wrenching time. He is with your sweet Allistaire.

  22. I heard about Allistaire through a friend of a friend and wanted to let you know that my church on the East Coast is now praying for her. Although I do not know you, your story and bravery have touched me and so many others. We light a candle for Allistaire every day now and have added her to our prayer list. May God take care of you and your beautiful family..

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