Miserable Mess

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IMG_0618“Today is the worst day of my life,” Allistaire said to my mom yesterday.

She hardly smiles.  I try and try and maybe occasionally there is a flicker.  Mostly she just lays in bed, curled on her side, flat expression or grimaces of pain.  The hurt intensifies, the moans quicken.  I glance at the heart monitor and watch her heart rate climb, climb. 150, 160, up and up.  Sleeping these days it’s in the 140s.  Sometimes it’ll dip down to 115.  A normal resting rate used to be in the 80’s or 90’s at night, about 105 in the day.  Her heart is working so hard. A flurry of intensity.

“I’m gonna throw up!!!” she screams and I tell her, “NO, NO, you mustn’t!  You HAVE to keep those meds down.  Your heart is hurting and needs these meds!”  She struggles to hold on, she pushes through and manages a few more minutes until her whole body is taken over by the anguished effort to empty her stomach.  Face contorted with neck thrown back, back arched and bottom jaw stretched as far down as it can go, mouth wide as the constriction of her stomach demands to eject its contents.  Retching is really the word for it.  Great green gushes of dark bile arch into the air and down into the basin.  Over and over her body is racked with contractions.  When at last she is spent and there seems to be nothing left, I ask her if she feels better.  “No, no, I feel worse,” she says with sad haggard voice.

I make her get up and walk.  “Even if you cry the entire time,” I tell her, “you will walk this lap around the Unit.”  She shuffles slowly along, one hand gripping Doggie and the other in mine.  Small warm.  Oh how I love her.  There are greetings as we move through the halls.  Cheers.  “You can do it Allistaire!”  Looks of love and compassion.  So many nurses and CNA’s that have loved us for so long, have watched Allistaire over the years, struggle and victory, defeat and perseverance.  “My tummy hurts,” she cries.  She whimpers and occasionally yells out on our loop, at last she collapses back in bed.

Her heart rate, oh man.  We’ve got to get this thing under control.  Her little heart is working so hard.  Her BNP (measure of heart distress) was 1,700 on Sunday.  I haven’t seen numbers like that in months and months.  Her BNP a week ago was 360 (normal is 0-90).  She had an echocardiogram and her ejection fraction has dropped from 36 two weeks ago to 22.  We are all hoping desperately that this is a temporary hit and not a long term regression.

Late on Thursday evening Allistaire and I arrived at my parents house with the plan to stay the night and get up early the next morning to pick Solveig up from camp.  I so wanted to see her little eager face, to have her tell me all about her week.  I wanted to see the transformation from the scared, nervous girl I dropped off on Sunday to the one that would be beaming with joy.  We had been in the house no more than 5 minutes when I felt Allistaire’s face as she nuzzled up against my leg, having returned from the other room ready to change her attitude.  Oh my gosh she is so warm.  The internal debate, the desperate desire to ignore what I sensed flooded me with heat but my mind sternly declared, “Take her temperature,  just do it, you must.  It doesn’t matter that you just drove all the way here and may have to turn right back around.  Focus.  Take her temperature.”  Solveig’s sweet face lingered in my mind.  I turned to Allistaire.  102.4  A fever.  Oh crap.  We’ve got to go, we’ve got to go.  Allistaire has no ANC, she has no defense.  Something is brewing in her and things can move fast.  103.5  We were out the door and back on the road, speeding through the night.  I talked to the Hem/Onc Fellow on call.  I want blood cultures and antibiotics ready for when we get there.  I talked to the ER.  I don’t want to have to wait.  I drove 70 mph the whole way, rehearsing in my mind what I’d say to the officer if I was pulled over.  Allistaire cried and cried, so sad to not see Sissy.  My jaw was clamped closed, hands gripped on the steering wheel, intent, scanning the night.  My whole heart screamed out into that darkness, “But I have TWO daughters!”

By 3:30am on Friday morning, we were at last settled into our room on the Cancer Unit.  Blood cultures had long ago been drawn and antibiotics were nearly ready to go in for the second time.  All day Friday she fought fevers.  At 13.5 hours something started to grow in the blood cultures – bacteria described as gram positive cocci and chains.  Another big gun antibiotic was added to cover more bad bugs – she was now on Flagyl, Cefepime, and Linezolid.  She has VRE (Vancomycin Resistant Enterococci) which means that if this bacterial infection was Enterococci, Vancomycin would not be enough to stop it, we need something bigger, broader.  With another day’s growth the villain would be revealed as Streptococcus Viridans.

As Saturday began her fevers waned but a new woe broke into the peace of the morning with sharp painful screams.  She was inconsolable.  What could be going on? An X-ray was ordered to look for overt blockage in her gut.  Nothing could be seen.  A CT with contrast was ordered.  For three hours I tried to get Allistaire to drink the contrast, but over and over she would throw it up.  I was desperate.  We MUST get the contrast in or the doctors can’t see what’s going on inside.  Finally, we just decided to go for it and hope for the best, a sufficient image.  Thank the Lord there was no typhlitus but there in the loops of her intestines were great black spaces, gas trapped and a gut that would not move, that had altogether stopped.  When we got back from the CT she threw up a huge amount of contrast.  I couldn’t figure out how she could throw up so much, how so much could still be in her stomach when she had been drinking it over the course of hours.  Well now we knew, for some unknown reason, Allistaire has an ileus.  There is no physical blockage but there is a mechanical one, her gut won’t move and so that gas is just stuck in there and whatever she puts into her stomach just sits there until it is forced upward.  She was immediately made NPO (Nothing Per Oral – meaning she can’t eat or drink). After much conversation and a consult with the GI docs, it was determined that she would be allowed a few occasional sips of water and to take her oral cardiac meds that cannot be converted to IV.

This ileus is a mystery.  We don’t know what has caused it.  Regardless, it is incredibly painful for Allistaire and she is now on frequent pain meds and anti-nausea meds.  Despite being NPO, her stomach continues to make acid and therefore regularly fills and requires her to retch it all up.  The GI doctors recommend her regularly curl up with her knees tucked under her stomach, her little bottom in the air, in hopes that the gas will slowly move up and out.  We now have an activity plan and walk around the unit hoping the movement will help her gut to get moving.  The next step will be to add a medication that can help wake up the gut by blocking certain receptors.  A third step would be to have a NG (Nasogastric) tube placed to suction out the contents of her stomach and giver her relief.  As you can imagine, Allistaire is terrified of this prospect. The reality is that this will simply take time to resolve, there’s really much we can do directly to solve this.

Not only does the ileus create immense pain for Allistaire which raises her heart rate but it also necessitates that she be on TPN (Total Parenteral Nutrition) which is essentially getting all of your food by IV since her gut is not functioning.  Being on TPN is viewed as a “Grade 3 Toxicity,” which in turn bars Allistaire from being eligible for the T-cell trial.  While we assume the ileus will resolve and she will have no problem eventually returning to eating normally, while on TPN she is disqualified from participating in the T-cell trial.  Because this means that the possibility of getting the T-cells is firmly put on hold until her gut starts to function again, the cardiac anesthesiologist did not feel it worth the risk for her to be sedated today (Tuesday) for the planned PET/CT, brain MRI and bone marrow aspirate used to determine the state of her disease.  The fact that Allistaire is throwing up would necessitate he put in a breathing tube during the sedation so that she won’t aspirate.  A breathing tube increases the risks of the procedures and he was considering arranging an ICU backup plan.  All her procedures have been cancelled for now and will hopefully happen the beginning of next week in hopes that with more time her heart function can improve and perhaps so will the ileus, thus reducing her vomiting and that all in all sedation would be less risky at that time.

All of this is incredibly disappointing and scary.  Since Allistaire’s gut is not functioning, everything must be converted into IV form which means a ton of fluids are being pumped into Allistaire’s veins which in turn creates much more work for Allistaire’s heart.  Normally all her food and liquid and medicines would go into her gut, not at all adding work to her heart.  This is a vicious cycle.  She’s in crazy pain so we give her pain meds.  The pain meds, even the non-narcotic ones, act to keep her gut suppressed, but her pain causes higher heart rates.  Until the ileus resolves, she is taking in a ton of fluids (even though this is being tightly monitored, restricted and managed by Lasix) which is also hard on her heart.  You can’t use Lasix too much to get her to pee off fluid because her kidney’s don’t like it.  Already today her BUN is 42.  I want to throw up my hands.  Today her BNP was 2,600.  I know it is nearly doubled simply because she had a transfusion of red blood yesterday.  Man, we need her ANC to come up.  We need her marrow to recover so she doesn’t keep needing transfusion.  Everywhere I turn there are things we desperately need to look different if she’s going to have a shot at making it.

Dr. Cooper reminds me that this is exactly the sort of scenario the doctors have described to me that can happen with chemo that suppresses her counts to zero.  The only chemo that really has a shot at taking down her disease also wipes out her white blood cells which defend her against all sorts of bacteria and viruses.  To get an infection almost always means the necessity to respond with an increase in IV fluids of various types.  Her heart just limits everything that can be done.  But here’s how I see it: we know the outcome if Allistaire is not given chemo of any significant strength – her disease will progress and we won’t be able to stop it.  She will die.  The alternative is we give her chemo that may stop her disease while opening her up to awful infection possibilities but that she may be able to make it through.  One choice leads to only one end – death.  The other has the chance to work and just maybe infections won’t be the death of her.  Maybe just maybe there’ll be a way through for her.

Statistics.  Oh what deafening power they seem to possess.  Allistaire probably won’t make it.  The likelihood is that she will die.  Even from the time she was diagnosed she only had about a 60% chance.  Relapse wipes that percentage down to nearly nothing.  Almost exactly two years ago, when disease was found after transplant, the doctor told me Allistaire had a 5% chance of survival and probably wouldn’t live 6 months.  Okay.  So a 95% chance she’ll die.  But she didn’t die in those 6 months and two years later she is still here fighting.  Somebody has to be the 5% is what I declare to myself over and over.  Allistaire just may be in that 5%, who knows?  And you know what?  Statistics say Allistaire should never have begun this crazy path.  Her type of AML, M5, only constitutes 2.5% of all children diagnosed with leukemia.  Only .8 to 1.1 in a million children are diagnosed with M5 AML each year.  She is literally one in a million.  So while she may only have the slightest chance of survival, well chance, chance really has nothing to do with it.  Chance has no power.  Chance is simply an observation of what most often occurs.

I call out to the Lord over and over because I believe it is He that holds her life.  He is the one to determine her path.  It is not chance or probability or statistics that determine the outcome of this brutal road, but the Living God, my Father.  And it is a peculiar sort of wretchedness to know that the one I love, the One who declares to love me, the One who is able to sustain her life…He may not.  He may allow death to come and swallow my sweet child as He has so many other children.  On the surface this seems to be an ultimate hypocrisy, and ultimate deceit – not love but horrific cruelty, betrayal.  But He calls me to His Word – to fix my eyes on Him and to be reminded down into the core of me, that He is God, GOD!! It is His to give life and bring it to an end.  It is His to determine the course of my life, the course of Allistaire’s.  He reminds me to separate an audacious 21st Century American view that I have some sort of right to a healthy 80 years on this planet from what He declares this life to be about.  Because it is not about marking off the bullet points of beautiful childhood, rigorous college education, fulfilling meaningful successful career that gets me enough money to have a nice house and vacations for myself and my perfectly attractive, wonderful spouse and children followed by a leisurely retirement and at long last a pain-free dignified death surrounded by everyone who has loved me and honors my amazing life.  No, really God makes a much simpler claim to what this life is about.  He says this life is about coming to see that HE is the source of life, true, eternal, abundant life through the death and life of His son Jesus Christ.   And if you have come to see Jesus as the only source of life, then go, go, live your life in such a way as to draw the attention of others to see His resplendent beauty – Christ – not a path to life but Christ who IS life itself.  Christ is not my guide.  He is not my sherpa hauling water and nourishment for me as I walk through this life.  Christ Himself is the very way, He Himself is the water, the food, the healing.

So who am I to say what my life should look like?  Who am I to say how many days I ought to be allotted or what circumstances should fill them?  Over these long years the Lord has worn me down, cut here and there, gouged out, cauterised.  It has hurt.  At times it has been agonizing.  There is still much work to be done on this proud, self-sufficient, trembling heart.  But I can say, that somehow, mysteriously, I am coming more and more, millimeter by millimeter to trust Him more, to rest, truly rest in Him.  Honestly, I really don’t think Allistaire will make it out of this alive.  I am utterly confident that God can make a way through for her.  He has made a way through many times when it felt like all the walls were crashing down on us.  He can do it again.  He may and that would be glorious and oh how I would rejoice and rejoice and thank Him for all the days that He has carried her so far.

But there is a way in which I feel like I am just living out days that must come.  We cannot say we are done because she is far to alive.  As long as there is an open door before us and Allistaire still seems to have vitality, we will walk forward.  But somehow it feels that we are coming down to the end of things.  I guess the oddly beautiful thing though, is I’ve stopped caring so much about what will be.  I sipped warm foamy latte yesterday and realized that I have been going to that coffee shop and drinking that coffee all through fall into winter into spring and now summer.  Fall is coming.  I cannot begin to imagine Fall.  There is no end in sight and what I mean is, I am no longer fixing my gaze on the end.  At long last, I am coming more and more to dwell in this present.  To feel the incomprehensible soft wonder of peach fuzz along the curve of her forehead down across her little nose.  I am soaking up the sensation of her little bottom tucked up against my stomach as we lay in the bed together, my fingers running through her flaxen hair.  I rest my cheek on her cheek.  I listen intently to her voice.  With gentleness I change her diaper.  With sternness I demand she take her meds.  I live out each task and detail.  I want to fully inhabit not just these days but all the moments and actions that accumulate to eventually be gathered up into the satchel marked “day.”  I look over labs, all those little numbers painting a picture of her flesh, telling a story of the tug of war of life and death, sickness and health.  The numbers, how they have for so long knocked me off my feet, casting dark shadows over so many days.  Their power is slowly draining away.  I can control so little.  The doctors have so very little power.  We are all just doing our best, but really, it’s out of our hands.  I have not relaxed my guard over her, I will not let up in my fervor to examine every last angle, but no longer do I grip her with white knuckles desperate and crazed.  She is my sweet little love and I will do my best to care for her every moment and every day given to me.

Yesterday evening I stood looking out across Lake Union toward the beautiful Seattle skyline, the sun having already set, leaving mellow pinks blending with the last of the day’s blue.  Behind me cheerful, high energy music played and hundreds of people gathered.  Doug, the camera guy, said it best – “beauty and affliction.”  There’s just so much of that.  How strange that the thread weaving all these people together, people dancing, drinking beer and chatting – we are all bound together by sorrow, by loss.  Last night was the big Obliteride kick-off party at Gasworks Park.  I had the opportunity to stand up for a few minutes and relay a bit of Allistaire’s story and the incredible need to advance cancer research.  I dwell within just one story among thousands and thousands, millions really, of stories about how cancer has stolen away those beloved, cherished, bright.  Today I have the joy of having some fun team time with the Baldy Tops. Tomorrow we will put into action all that we have prepared for.  We will swing our legs up and over that frame, hoist ourselves onto the seat, clip into pedals and at long last flex…will our legs muscles to contract, propelling us forward, down the route.

Thank you ever so much to each of you who have given sacrificially of your own money, money you could have spent a thousand other ways, but chose to give to directly enable the furthering of cancer research.  I’ve said it before, but I’ll say it again.  It all seems so abstract, science, experiments – weird stuff.  But it’s a real man like Stan Riddell who is an immunology expert at Fred Hutch.  I saw him standing on the outskirts of the party at Obliteride last night.  I introduced myself.  I looked into his eyes and told him thank you, thank you.  He went on to tell me that he is the doctor that trained Dr. Bleakley, Dr. Gardner, Dr. Jensen.  Dr. Bleakley is our amazing transplant doctor who designed the naive T-cell reducing transplant that is attempting to minimize the awful impact of GVHD as a complication of transplant; this was the transplant we had so hoped Allistaire would be able to have.  Well, you know Dr. Gardner as one of our beloved smarty pants doctors who has cared for Allistaire so long.  What you may not know is that along, with Dr. Jensen who is the lead researcher at Seattle Children’s Cancer Research specializing in pediatric cancer research, she heads up the amazing T-cell trials at Children’s for the more common type of childhood leukemia, ALL.  I met Stan’s family – his wife and two daughters.  I told them thank you for the sacrifices that they have had to make to have a father who would spend so much time at work, in the lab.  Your money goes to real people, doing real amazing work.  When we fund cancer research we are putting more tools and time into the hands of these brilliant minds who work feverishly to understand the staggering complexity of cancer.  You free them up from having to spend so much time scrambling to cobble together enough money for the next trial.  You help them design and pay for that crazy cool piece of machinery that doesn’t test 10 samples of DNA but a thousand.  You help pay for the lab assistant who will run the experiment and enter the data.  All of this enables research to happen at a greater pace, speeding up the discoveries that lead to cures.  This is where your money goes.  Perhaps it still seems abstract, like just writing a check because you love Allistaire, your heart hurts for our family and you just want to do something, anything to help.  Well, for that I sincerely thank you, but just know…know that not only do we feel loved and supported by your act of giving, but it is making a real and tangible impact, not just for Allistaire but for many children, many adults.  Perhaps one day you will be the one to benefit from advances in cancer research.

Since I began this post many days ago, Allistaire’s ANC has popped up to nearly 300.  While Friday’s echo still showed an ejection fraction of 22, her heart rates are drastically lower and nearly normal.  The cardiologists have added two more medications to try to improve her heart function – Isosorbide dinitrate and Hydralazine.  There is no resolution of the ileus yet and she remains in pain but her cheeriness has improved and she’s actually joked around a bit.  Her legs have gotten stronger again and we’ve doubled the distance of each walk.  A PET/CT, brain MRI and bone marrow are all tentatively scheduled for Monday.

For Obliteride pictures and updates check out the Obliteride Facebook page and/or the main Obliteride website.IMG_0575 IMG_0576 IMG_0580 IMG_0584 IMG_0595 IMG_0602 IMG_0606 IMG_0611 IMG_0614 IMG_0620 IMG_0625 IMG_0627 IMG_0628 IMG_0629 IMG_0639 IMG_0642 IMG_0647 IMG_0649 IMG_0652 IMG_0663 IMG_0666 IMG_0669 IMG_0671IMG_0660

 

8 responses »

  1. You guys are always, always, on my heart. I feel your words and I cry and rejoice and grieve with you. You are a beautiful family, in every way. TRULY. And you are a beautiful example of God’s amazing grace. I am so happy to read of Allistaire’s recent improvements. I am hoping that the doors continue to open …. and stay open. Praying for peace and comfort as you continue to walk through this valley. Have a great ride!

  2. Please post your child’ situation quicker. Prayer needs to be more specific. If you don’t have time, please ask someone to do it. I appreciate reading your journey and I understood them because I went through it myself. But I can pray more effectively for Allistair if you update her illness quicker and she does not have to suffer for a few days for the same issue. Send out just a few words mentioning where was the pain/symptoms and what the doctors say.

  3. Praying for Allistaire’s ileus to resolve! I just hate to think of her having that pain. And thinking of you riding today. May many, many dollars be raised for cancer research. Love that precious girl…

  4. As I first read this post yesterday, I just sat and, well I am not sure, I just sat… Then I cried out to God and begged for his healing for Allistaire, for strength for her organs and for all of them to be healed. Love and Hugs from me to all of you. Date: Sat, 8 Aug 2015 16:58:04 +0000 To: kathybarnes102@msn.com

  5. I’m with you, Jai, on the 5% Club! YES!
    Why NOT Allistaire…somebody’s gotta be in that group…so keep “declaring that over and over and over” as we communally call out to The LORD of Statistics for her Healing…The LORD of ALL!
    We KNOW what HE CAN DO…we just don’t know what He WILL do.
    YET He invites our Prayers of Hope and Longing into His Majestic works. They change things.
    HIS purpose will stand in all our lives. Praise God!
    Thank you sooo much for sharing such intimacies…what and when you choose to do so. It is a gift.
    We pray with all heart in ways you have asked.
    JESUS!

  6. Jai, we’ve never met, but I stood in church this weekend with the lights down and the music up, singing and praying, having just read your latest post and cried my heart out for you guys. Prayers just for God to be surrounding you – to make the miracle happen, to be with you in the journey, to hold your hand and your head up. While back in Montana in July with family, my dad asked – if you could do one thing for one day, where would you go and what would you do. Upon reflection, I decided that I would like to ride with you and the baldy tops in Obliteride. So next year we will meet. I will be there in August riding and bringing as many of my family and friends as I can with me.

    • Sarah – Thank you for your passionate prayers and words of encouragement! It would be AWESOME to have you on our Baldy Tops 2016 Obliteride team! This year’s Obliteride was amazing – so much fun and so much camaraderie! I look forward to meeting you and will include you in the email I send out in the next few weeks regarding being on next years team.

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