Bewilder

Standard

IMG_2817Bewilder.  Is that the right word?  I startle to find myself out in these woods, not sure where I am, sometime between night and coming day, or is the day done and night approaching?  I am out here, cast in the land between lands, this already and not yet, ever tension.  But she is so alive?!  “So to summarize,” I say when there is nothing left to say, “You don’t believe she will make it?”  All heads nod.

I didn’t want to cry.  I didn’t want to have my heart tearing out of me be seen as with audience by these eight.  I fought the tears knowing the all consuming fatigue they bring, all the cells of my flesh flattened under crushing weight, silent and unrelenting.  I studied the tree tops beyond those panes of glass, never seeing them.  “Her heart could suddenly stop.  She could have an arrhythmia.”  Gutteral cry, “Oh God.”  It was not hard for the images of doctors swarming her to come vivid.  Throughout the day and night the speaker in the hallway, the speaker in the room declares, “Rapid Response Team, Code Blue,” always joined with the location.  “Code Blue Ocean 8 in front of the lab.”  “Code Blue River 5 room 307.”  I have seen the flood of doctors and nurses responding like blood gushing a wound.  Instantly I can hear the words, “Code Blue Forest 6 room 321,” and this time it would be my sweet girl.  I know if it came to this it would be the end.  While they might be able to bring her temporarily back, there would ultimately be no return, no recovery.  But yes, yes, yes try to bring her back because I want to gather those who have so cherished her.  I want that time to surround her with faces who hold her dear.  I want that chance to say good-bye one last time.  I want to blow her kisses.  I looked into the cornflower blue of her eyes and mourned that the one beautiful thing I clearly gave her might be lost.

Dr. Kemna, the cardiologist does not think there is a very good chance she will be able to recover the degree of heart function necessary to qualify for transplant, that far off ejection fraction of forty-five, if she can recover at all.  At some point in the future, they will try to wean her off the Milrinone.  Her ability to successfully wean off Milrinone or not will be an indicator of the likelihood that her heart can recover some function.  So while Milrinone does nothing to help the heart recover, whether or not it is needed to function well in terms of things like breathing and profusion to the rest of her body, will signal how severely her heart has been wounded or the possibility of resilience.  If she is unable to go off Milrinone, it may be possible to move her up to the cancer unit, or even possibly to Ronald McDonald House, but these moves would solely be to maximize quality time with her.  It would foretell the end.  If she can successfully wean off Milrinone she would continue on oral heart meds and consistent monitoring to see if there is any improvement in her heart function.

All efforts to improve her heart function is dependent on the resource of time.  It will take time.  The question is whether or not her cancer will allow such time.  As noted before, we are working off the assumption that she is in remission given that she started this round in remission in her marrow.  The extremely poor condition of her heart continues to make sedation unnecessarily risky.  The PET/CT scan can physically be given without sedation, it is just a matter of whether or not Allistaire can stay still enough for the 45 ish minutes it would take to do the scan and get a good image.  She can certainly lay still for the very brief 30 seconds a CT requires and so we may start with that.  Dr. Gardner said the down side of CT is that it can show lesions that are actually healing rather than solely active leukemia, with no ability to tell the difference on the image.  The advantage of the PET scan is that it shows the active metabolic cancer.  Thankfully, a PET scan carries no risk as it is not a form of radiation and so the worst that could happen is that we try it and it doesn’t yield a clear image because Allistaire doesn’t stay still enough.  For now a bone marrow biopsy is not an option, but they will be drawing peripheral blood upon which the pathologist will conduct Flow Cytometry.  While it will not be conclusive, it will be comforting if there is no leukemia present which would in turn more affirm the view that she is in remission.

Without any further treatment, Dr. Gardner says Allistaire only has about a 10% chance of staying in remission.  I can’t imagine doing nothing further.  So once her ANC reaches 1,000 she will begin getting Azacitidine.  Today her ANC is 348.  Neither Clofarabine or Decitabine are options because they suppress blood counts too much.  At this point, any further bacterial or viral infection for Allistaire could easily and immediately tip her heart over the edge.  She has no reserve.  The hope is that Azacitidine will be enough and have the same success it did in the seven rounds she had after her bone marrow transplant.  Another upside is that it can be given outpatient.  If she still has chloromas, the solid leukemia seen on PET/CT, there is the possibility of doing focal radiation which would likely be very effective.  However, radiation is given under sedation for someone as young as Allistaire.  You must lay completely still in the exact position they place you in.  Radiation is incredibly precisely targeted.  A styrofoam form was created to lay Allistaire in the last time she had radiation and three permanent little dots were tattooed on her body in order to line everything up with the rigorous calculations done in preparation.  Allistaire would be left totally alone in that room with the foot thick lead door.  I really don’t know if she could do it.  If Allistaire is not in remission, every single thing changes.  If she is not in remission, she is done, done.  There is nothing left to offer her because anything that has the potential to get her back in remission would be far too harsh for her body to endure.

One other possible option, which like transplant, requires substantial improvement of heart function is the WT1 trial with the modified TCRs being conducted by Fred Hutchinson Cancer Research Center. (Click HERE for details on this trial)  This trial requires that Allistaire’s ejection fraction be 35 or higher.  Typically the cell manipulation is done with donor cells left from a stem cell transplant, however, in Allistaire’s case they could ask the donor to donate cells directly for this trial.  The scientists would engineer the donor’s T-cells to specifically target the WT1 protein expressed on the surface of her leukemia cells and in turn destroy the cancer cell.  Check out more about TCRs (T-Cell Receptors) at Juno Therapeutics some of whose scientific founders include Dr. Phil Greenberg at Fred Hutch and Dr. Mike Jenson at the Seattle Children’s Ben Town Research Center.

The other topic that was discussed was the potential use of VADs.  The other day when I logged onto the Seattle Children’s Hospital Family Network, their website popped up and the main page was featuring the expertise at Seattle Children’s and extensive availability of a variety of VADs – Ventricular Assist Devices.  My face lit up with possibility and terror at such a possibility, such an extreme measure.  It said that VADs can be used for patients with heart failure to allow their hearts to rest and recover.  I immediately tracked down the cardiologists and said I wanted to discuss a VAD as a possible option for Allistaire.  Apparently Dr. Gardner had the same idea and discussed it with the cardiologists before our care conference which occurred yesterday afternoon.  The short of it is that a VAD is not an option for Allistaire.  You cannot go through a bone marrow transplant with a VAD.  The context in which they are successfully used in the short-term is for patients whose heart has an acute hit, from a virus for example, but was previously healthy.  The VAD can indeed give their heart the rest it needs to recover and the relative health of their heart can also recover from the actual damage done by implanting the VAD.  In Allistaire’s case her heart is exhibiting the cumulative effect of all the harsh chemo she has endured.  It has been compensating a very long time and likely cannot bounce back.  A VAD in her case would only be possible as a bridge to heart transplant, which as one with cancer, she is not eligible for.  The thought of a heart transplant is insane to me, insane.  But I won’t deny that if she were in this plight on the other side of her bone marrow transplant, I would not let up, we would walk forward to the transplantation of her most core organ.  The cardiologist noted that in cases of chemotherapy induced cardiomyopathy, it doesn’t usually show up for another 10-20 years.  That sounds like a long time.  But really, Allistaire would still only be 15 to 25 years old with a heart that has failed.

It is uniquely woeful that the very treatment that has extended Allistaire’s life these past three plus years is what has so damaged her heart.  Yesterday the cardiologists wanted an X-ray of her lungs to look for edema.  They put the little lead heart on her groin again and it was like a knife twisting in me.  In the care conference I found myself internally crying out, “You’ve already taken so much from her, so much…now this too, this?!”  I’ve already yielded her ovaries.  I’ve already acquiesced to the reality that TBI (total body irradiation) would impact her cognitive abilities.  I know her growth and bones have already been harmed.  She has already lost so many days as a child, and now her heart too will be gouged out?  It is like cutting off someone’s leg and saying, be happy, you still have one leg.  And then, oh wait, we must cut off that other leg and an arm.  Limbless, you are thankful to be alive.  But you have been harmed you see?  You have been ravaged.  The exchange for your life has cost so very much.  But it turns out you cannot live without your heart.

I asked Dr. Brogan, our main ICU doctor, if he had any wisdom he could offer, having witnessed so many families over the years walk this road.  “I don’t know how to do this,” my voice bleak.  “No one knows how to do this,” he told me.  It is not natural that a child should die before their parent.  While it happens often enough, it is not the natural order.  He was very gracious toward us.  I am so very glad to have him on our team, and like Dr. Gardner, I have invited him and asked him to speak to us honestly if and when he believes we have exhausted our options.  Dr. Gardner told Sten and I yesterday at the end of the care conference when it was just the three of us, that she thinks of Allistaire every single day.  That is all I could possibly ask for.  I just need to know that she is being fought for, that she is not being given up.  And if they believe the time has come, let them speak and at last we can yield, at last we will rest from our relentless pursuit of her life.

For now, we press on.  It is not yet time to lay down and rest.  We press on, we endure.  We put our face to the wind and cry out in anguish and fierce determination.  There may be a way through, there may.  There are so many mysteries of how our God works, of his sovereignty and the intertwining of our prayers.  I am humbled, brought low, so low with gratitude for thousands who cry out to the Lord on Allistaire’s behalf, on ours.  Thank you.  Thank you my brothers and thank you my sisters, bound eternally by the blood of our sweet savior Jesus Christ.  Thank you for sharing our burden.  Thank you for standing out in the wild night under that sweep of stars, that dense shimmer and gauze of Milky Way and crying out for the Living God of the Universe to hear your one small voice!  For we are calling out to you Oh GOD!  We do not understand your ways.  What you are doing is here is so unclear, it seems so dreadfully wrong.  How will you ever, ever redeem this loss?

I find myself again standing with the blaze of roaring furnace behind me declaring that I know my God is able to save, but even if He does not, I will not bow to any other god.  I will stand in worship, though the fire consume me.  Am I fool?  Many will nod, yes.  But you see, I have seen the Lord.  I have heard His voice.  I choose to turn my face to Him.  I will again fix my eyes on Him.  I will yield again to His call to trust though the mountains fall into the sea, for the joy set before me.  For the joy that will come, but the joy too that is, that is in this present time.  I seek to be fully present to these minutes, these gritty seconds that accumulate to the sum of minutes, hours and days.  I instruct Allistaire to consider her tone with the nurses when she is irritated with their presence.  It is not about manners, it is about love, love.  I seek to love.  I seek to love Allistaire.  I seek to love Sten and Solveig.  I seek to love each nurse, doctor and person that I encounter.  For this is my life, to love the Lord my God and to love His creation that bears His image.

Thank you to so many that have given generously to further cancer research.  Thank you for your heartbreak over Allistaire’s broken heart and a yearning that there could be a better way.  If you would like to stand with us in funding cancer research so cures for cancer can be obtained without costing so much life, please consider supporting me in Obliteride which gives directly to cancer research at Fred Hutchinson Cancer Research Center.

Also, my dear friend and fellow cancer-fighting mom, Pam, has organized a time to call out together to God on behalf of Allistaire.  The details can be found HERE on Facebook.  The time is set for next Friday morning, March 6th, Allistaire’s 5th birthday.  Please do not send any birthday gifts.  The truth is, she has enough in the way of toys and such.  If you wish to honor her life and the hope for more life, again I ask you to consider taking that desire and investing it in cancer research, and certainly, please pray for my girl.  Prayer is not some magic equation where enough prayers by enough people yields the desired result.  Philippians 4:6-7 says much to instruct us:

“Do not be anxious about anything, but in everything by prayer and supplication, with thanksgiving, let your request be known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”IMG_2804 IMG_2809 IMG_2824 IMG_2822 IMG_2813 IMG_2802

 

21 responses »

  1. Still praying, still holding you guys in our hearts!!! I weep to see those pictures of Allistaire with her daddy and so wish you guys didn’t have to be apart during this time. I’m going right now to check out the details of Allistaire’s birthday prayer party. 🙂 Thank you (again) for allowing us to be part of your journey. My friend Erin was over at my house today and saw Allistaire’s picture on the fridge and wanted me to tell you she’s praying for you guys daily as well. Much love to you and your dear family.
    Alison

  2. dear Jai
    Thank you for your update. We continue to hold you close in our hearts, thoughts and prayers. I love you beautiful friend.

    Bill, Heidi and Sam

  3. Dear, dear Jai – Allistaire, you, Sten, Solveig, and all of your family continue to be in my heart and my prayers.

  4. Dear Jai and family… Our hearts ache deeply as we read and pray.. I am so grateful for your statements of, “I have seen the Lord. I have heard His voice. I choose to turn my face to Him. I will again fix my eyes on Him.” These are so powerful, especially in the presence of a fiery furnace. I couldn’t help but think of DANIEL 3:16-18 where Shadrach, Meshach and Abednego replied to him King Nebuchadnezzar, “We do not need to defend ourselves before you in this matter. If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods….” In one of the pictures you included, I noticed and appreciated the presence of JOB 19:26 “Though my flesh it be destroyed, yet with my eyes I SHALL see God,” on Allistaire’s whiteboard on the wall… Finally, dear, dear sister and family, Philippians 4:6-7 has long held a special place in the hearts of many who are HIS.. I find a key for John and I is in ‘with thanksgiving,’ by which we realize that gratitude for HIS presence with us in, and through, the circumstances, is what we are MOST thankful for! Laura Story’s song, BLESSINGS comes to mind… Also, since I am a worship leader who loves hymns, ‘TURN YOUR EYES UPON JESUS, look full in His wonderful face and the things of Earth will grow strangely dim in the light of HIS glory and GRACE,’ is ‘playing in my soul’ at this moment! THANK YOU for your testimony of His faithfulness! Warmly sent from a Bremerton, ‘BSFer!’ PS.. Years ago, your mom told me I ‘talk a lot!’ (BTW, I super appreciate how many words you bless us by recording and sending .. Your words are never TOO many, for someone like me!)

  5. March 6. You got it. We are praying and calling out to sweet Jesus for Allistaire’s life.
    Jai. Your heart is beatiful. The work of the Holy Spirit is so evident. I love that about you!!!

  6. Sweet, sweet Allistaire. You touch Makenzie’s and my heart! We continually pray for you. Because of you, your Mom’s words point so many to the heart of Jesus! What an incredible gift you and your family are to so many. We love you!
    Makenzie and Jen

  7. Please know that our family sends our love to yours. We will continue to devote time and money to cancer research but for your family, now, it is all we have to give. Fortunately, like you, we believe it has tremendous power. Allistaire is fortunate to be surrounded by your love and your persistent strength (yes, strength feels like weakness).

  8. I know you’re likely tired of hearing all the other stories that may or may not apply to your child. But, I’m going to share just a little of my son, Anthony’s, story.

    Anthony is 6. He has Down syndrome, a congenital heart defect that required open-heart surgery at 3 months, leukemia survivor, profound hearing loss in one ear, and vision challenges. Just this past winter, Anthony had been getting sicker and sicker every time he caught a simple cold. Mind you, he’s nearly 2 years out from his last chemo. He went through 3 1/2 years of chemo for ALL.

    During the time Anthony was getting so sick (he was in the local hospital twice this winter for a cold), we discovered that one of his lungs does not move AT ALL. He’s basically working with one lung functioning and when his body is taxed with something as simple as a cold or driving over the pass to Seattle, that one excellent lung is compromised and he develops pneumonia or collapsed lung issues.

    We can take care of so much at home relating to this, but during the middle of the winter, I kept thinking that there’s no way he can live to be an adult someday. Why even bother with school, routines, etc.??!

    Then, our oxygen supply guy told us about an uncle who smoked, had emphysema, and also only had one lung that worked. He said his uncle wasn’t supposed to live for longer than a year at the very most when diagnosed with the emphysema. He lived 20 more years! I started thinking about it, and realized that yes, Anthony is very sick. But, there is no expiration date stamped on his forehead, and he could still very well live to be 50 someday.

    I know that our children are very, very different, with very different medical challenges. I know that your daughter’s situation is dire and and is extremely serious and scary. I know what it’s like to hear statistics, not so much with my own son as with so many other children who we grew to love who also happened to be fighting cancer.

    I also know how frustrating it is that something that saved your child’s life has damaged her organs so badly. Anthony’s lung likely does not function as a common side effect of the heart surgery that saved his life as an infant. That blew me away when I learned that.

    We are praying for Allistaire.

  9. Praying for the Lord to do a miraculous healing in Allistaire’s heart. Love you guys! I’ll be praying with the masses on her 5th birthday. She is a precious little girl. Loved by so many. You are in my thoughts, but mostly in my “prayers without ceasing…”

  10. I am praying. Please Father, make a way through for Allistaire, for Jai and Sten, for Solveig! Carry this family through such dark times.

  11. I don’t have the right words right now. I have a heavy heart for all of you and I wish I could sprinkle a healing miracle over her body. May God boldly lift her precious body in miraculous recovery.
    Jai, holding you in my heart, one mother to another.

  12. I don’t have the right words either. I suppose there are none. It’s very surreal, even from a distance. I think of you all the time. I so appreciate you taking the time to share your burdens and your sweet girl with all of us. I will continue to pray and will join with everyone else in prayer on Allistaire’s birthday. Love and hugs.

  13. It Is Well
    Kristene DiMarco

    Grander earth has quaked before
    Moved by the sound of His voice
    Seas that are shaken and stirred
    Can be calmed and broken for my regard

    Through it all, through it all
    My eyes are on You
    Through it all, through it all
    It is well
    Through it all, through it all
    My eyes are on You
    It is well with me

    Far be it for me to not believe
    Even when my eyes can’t see
    And this mountain that’s in front of me
    Will be thrown into the midst of sea

    So let go my soul and trust in Him
    The waves and wind still know His name

    Jai, we sang this in church today and it took me right to you. Though we’ve never met, know we continue to pray for miracle and continued eyes on Him.

  14. Continuing…Continuing…continuing to PRAY to The ALMIGHTY who Rides the Heaven to help you!
    Naming, Proclaiming, and Claiming the PROMISES HE MAKES to you……
    You are NOT alone…He lives to intercede and fill the space for you and Allistaire in the ICU
    You are so so Precious to HIM (even MORE than Allistaire is to you!!!–can you IMAGINE THAT???) ……and a Delight to HIM…..HE cherishes you….sings over you!
    You are HIS. He will fight for you…cover you…Defend and Lift you up! Gentle JESUS!
    HE will come back for you!
    THIS is NOT the final chapter. There is more of HIS LOVE to come!!! More NOW!

    JESUS, between YOUR shoulders PLEASE HOLD Sven, Jai, Solveig, and Allstaire…
    ….and show them YOUR GLORY!!! Show US, Lord.
    We wait in HOPE!
    Amen.

  15. Oh girlie I just want you to know that you and Allistaire and everyone in your family are in my thoughts and prayers daily. I think about you so often and wonder how the day is going. I wish there was something that I could say or do that would help but just know that I’m praying for you and hoping that there is healing for Allistaire and good times all along the way. Hugs to you all. ❤

  16. Happy Birthday, sweet Allistaire. I’ve been saying special prayers for your birthday today! God bless you and your family on this special anniversary of your birth!

  17. Dear Jai, I am a friend of a friend … Just wanted to tell you that you are being prayed for every day, even days that you don’t post anything. My Bible verse for today is Psalm 91 – “9 Because you have made the LORD your dwelling place- the Most High, who is my refuge- 10 no evil shall be allowed to befall you, no plague come near your tent. 11 For he will command his angels concerning you to guard you in all your ways. 12 On their hands they will bear you up, lest you strike your foot against a stone.” How can this possibly be true? But it was true for Christ on the cross and so it is somehow true for us.

    Praying peace and physical rest for you today.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s