“What we need is some WD40,” I say, “and I’ve been trying for a week to get someone to come de-squeekify Allistaire’s crib.” Action. The nurse calls B&E immediately to put in the request. No, B&E is not a railroad, nor real estate in Monopoly, though both come to mind every time I hear it. Building and Electrical perhaps? Within minutes the man arrives, can in hand, but now exclaims he is not allowed to use WD40 on the unit. Let me do it then; he reluctantly hands over the can. It’s midnight and I enter the dark room with the nurse before realizing the straw for the can is missing. There’s no straw he says exasperated. Fine, I’ll hold Allistaire, she’s awake now anyway with all this back and forth, and we’ll just drive the crib out into the hall and lube it up. All this to make vitals and lab draws as stealth as possible. All for the preservation of sleep.
I turn back into the darkness, Allistaire’s round white face and round white head the only things visible. My arms reach out to lift her and I draw back in horror. “There’s blood everywhere.” Allistaire is sitting in a foot wide pool of blood and there’s deep bright red on the cuff of her jammies, blood on her blanket, blood on bear. Not sprinkled blood, but a pool, and blood thick, near black and blood bright. Lights go on and we rush to strip her down and find the source. “What about the WD40?” the man outside the door asks. Uhggg! Nurses keep arriving to aid the search. Do you see anything we ask one another? No, no, no. There is NO blood on her body! Where could it come from then? We glance at her lines and see no blood. Our eyes rush round and round her body. There is no blood on her. “Maybe she threw it up,” someone hypothesizes. My already racing heart begins a thumping sprint. What in the world could cause her to throw up all this blood I ask in terror. What unseen threats could be inside that would cause expulsion of this kind? Get the light and look in her mouth. Only a yawn reveals a bloodless mouth. Allistaire is shaking, shaking. We wrap the warm blanket around her naked body. There’s no blood around her mouth, no blood on her face. Where could it have come from? We ask the same question again and again. The lines are examined more. There is a wee bit of blood inside the line but this is common if Allistaire cries hard or coughs. There is only a little blood in the line and none on the outside. Well, there, in the clamp is the most wee amount of crusted blood. The cap must have come off…and then gone back on. She must have unscrewed the cap…and then got it back on. What? The caps are replaced, the lines are cleaned and a CBC (complete blood count) is ordered STAT (super crazy fast) as is blood.
I think I’m going to throw up. I feel the heat creeping hot up the nape of my neck. I need to sit down. I need to hold Allistaire. I need to sit down. I’m a wuss. What is my problem? She’s fine. She’s fine. I really think I might throw up. I leave her to the nurses while I sit on the edge of the bed. It looked like a crime scene. It looked like Allistaire must have been stabbed. My mind knows she’s fine and my gut revolts against the sight of Allistaire surrounded by blood. In a few minutes I regain my ability to stand erect and I rejoin the bedside party. Her hematocrit (red blood cell count) is 19 and she needs a transfusion. It was 22 yesterday so she was already getting close to needing more blood anyway. This just accelerated the process. The nurses filter out. The night attending doctor stops by to check in. Alyssa, our first year resident doctor, in beautiful composure, thought through the situation, discerned the necessary response and acted. I was impressed with everyone’s response and ability to work so well together. In the scope of emergency this was small. But a view was gained and there was an odd delight to be witness to people doing well what they were trained to do. The multiple daily declarations of Code Blue and requests for the Rapid Response Team are now met with a slightly lessened feeling of defeat and instead in this space has entered a sense of fight. Code Blue. Rapid Response. This is time for “game on” and they do it well. I praise God for this place. I praise God for these people. I praise God for intercoms that allow communication to go out fast and far. I praise God for feet that run, for coursing blood in the cortex of the brain that results in analysis of the situation and decision of what action to take. I praise God for machines that do what hands cannot.
Brokenness. I am constantly surrounded by brokenness. Everywhere I turn: another silent in-your-face scream that the world is broken. A simple walk down the hall results in passing a computer screen showing a picture of a distorted little girl face. I hear the words, “craniofacial malformations.” I walk on. I turn to the left and see ,out of the corner of my eye, the wheel chair with the mom following, the box with the tube like that of a vacuum cleaner, slung over her shoulder. I know who it is though I’ve never spoken to them. I know it is Chloe, only because I’ve heard her mom call her name, a little girl whose age is hard to discern. She sits in the wheel chair, a great ring of metal encircling her head like a halo, except that it appears to be screwed to her cranium. Whether she can turn her head to the left or right I do not know. Could she look down if she wanted to? Brokenness. Metal and screws and contraptions trying to fix it.
The mysterious flow of blood occurred Monday night. I wash the blood out of the bear, out of the jammies, out of the blanket. Today as I go to get on the elevator I see the face of a father and the face of a son I know well. We greet but our greeting is cut short when the father spys another man he clearly knows well. He is disheartened at the sight. “We were so sorry to see your name on the board,” he says to the other man. The man says few words. He says she’s fine. “How long are you here for this time?” the father asks. “Looks like she needs a transplant,” the man says, head lowered, rubbing his forehead under the brim of his hat. The elevator is here and we all change positions. I get on the elevator with my empty bag, ready to retrieve the clothes from the dryer. Another woman get’s on the elevator, her bag full, ready to throw clothes in the washer. Three nurses also get on. Two older and one younger. The younger wipes her red, puffy eyes. She wipes and wipes in the few seconds it takes to get to her floor. I gather the warm clothes from the dryer and examine each. The cuff of the piggy jammies shows no sign of the blood that soaked it a day ago. The blood has been washed away. No one would know it was ever there. This morning, I saw my friend Sally as she got her first quad-espresso of the morning. She said she was down late to get her coffee this morning because her daughter has been upstairs crying about the fact that she will never be able to have children. We three women stand in a circle, each with a white cup in hand with the picture of a mermaid. We stand there, we three, knowing there are three little girls, two years, 7 years, 19 years, that may share the same sorrow. The seed of life possibly forever altered, possibly never able to unfurl into full life. The conversation moves on, Sally goes up to the line for her second quad-espresso and returns. We continue to talk and at some point she mentions that her daughter has never been one to hide the scar from her port in her chest. The port she got nearly seven years ago, the first time she had cancer.
Yesterday I went to check the white board on the bathroom door to see if Allistaire could get in a bit early for her bath. I run back to the room, elated and joyful. I think she’s back I tell Sten. I wonder what room she’s in. Can I go find her I ask? Go, go Sten says, and I run to the main white board searching for her name and room number. I race down the hall. Fifteen minutes later I walk back down the hall, heart heavy with news of a needed biopsy of her lung. The cancer had spread there before, but it had gone. There are a few much preferable and more likely possibilities, but the fear insists on standing in the background. I wait with her until Thursday or Friday when they will do the biopsy.
Brokenness. Brokenness. At every turn there is brokenness. At every turn there is a fight against the brokenness. We come and go. Go and come. I rejoice with Heidi that she and her little Sam look they will be leaving soon, but I will miss her. Every departure a joy and a sorrow. Every return a joy and a sorrow. The blood is gone from Allistaire’s piggy jammies. Her ANC (Absolute Neutrophil Count) jumped from zero yesterday to 150 today. During rounds they talked about a preliminary plan of when we might get to go home and when to do the next bone marrow test. So soon, who could have guessed? Her ANC has only been zero for five days. I tentatively rejoice that our departure might be sooner than we had guessed. When I tell Sang that we might be going home soon, she looks sad. She tells me she hasn’t been to her home since October. The brokenness gets mended but comes undone again. Mend the tear. Bind up.
The past few days have been so full I feel I cannot keep up with relaying the details. The blood cultures proved sensitive to the antibiotic clindamycin so it has now replaced the previously added antibiotic. It joins the broad spectrum antibiotic, cefepime, that was first given in the early hours of Monday morning. This was the doozy combo that resulted in cataclysmic diarrhea in the last round. We’ll hope for less blow outs this time. In order for Allistaire to go home she must have 3 consecutive negative blood cultures, with the last one remaining negative for at least 24 hours. When this occurs, they will stop drawing blood cultures. Then she can cease the cefepime once her ANC reaches 200. The clindamycin must be taken for 2 weeks regardless of her ANC which means we will now be sent home with an IV pump and trained to give her IV antibiotics. This afternoon resulted in yet another unexpected but ironically fortuitous discovery. As Lysen, our nurse, was unhooking Allistaire from her lines until bedtime, she went to flush the line but had not yet undone the clamp. Saline sprayed out in a sudden demonstration of the culprit. In the perfect moment, in the perfect position of the line, a tiny hole was exposed, this the likely source of the infection and the loss of blood on Tuesday night. Only the red line on her double-lumen Hickman has tested positive for the invader: streptococcus viridans. It is in the red line that the hole was discovered. The IV team came at once to Allistaire’s room and preformed a repair of the line by clamping it first with a bulldog clamp above the hole, cutting the line and attaching a new length of line with a new cap at the end. A thin plastic tube covers the point where the lines join and they then inject glue with a syringe into both ends, filling the space. This section of the line is then covered with a dressing and has to set up for 24 hours before it can be used again. As a result, they will be unable to draw blood for cultures from this line until tomorrow evening, which will in turn delay our earliest possible departure by a day. Of course, it is impossible to predict what her ANC will do so this might end up being irrelevant in terms of timing. Tomorrow she will have another EKG to look for any heart damage from this round of chemo. At this point they are scheduling her next bone marrow test for next Thursday or Friday which will be day 29 & day 30 since the start of round 2 chemo. What I won’t go into detail about is the intense sickness the doctors said could, in rare cases, occur in conjunction with this particular infection in AML kids, referred to as a “chemical storm.” Visions of dark, brewing clouds on the horizon, of funnel clouds, of tidal waves, of swirling ravage come to mind. No one should use such vague, picturesque terms with me. It opens up untold possibilities in my mind and even as I questioned one of the nurses about this “chemical storm,” I was not able to get much info. I was only told it was a “cytokine” response. The best I can understand is that it is akin to tumor lysis in which the tumor cells, once killed, spew their evil-doing innards into the blood stream wrecking havoc. I guess swarms of dying bacteria can have similar effect. I think I just went into detail. Sorry. Okay, what I won’t go into detail about is the bubble they attached to the top of Allistaire’s crib to try and keep her hands off the IV pumps and the unabomber straight jacket device we’re to try using to keep Allistaire’s curious George hands off her lines. It really looks like she could shove a few sticks of dynamite in there if she wanted.
In the morning when I take a shower, I stand in the hot water forever, only the lure of a mocha and crocheting makes me want to be done. I stand there with the shower curtain closed, not wanting to re-enter the world of reality. It is a bit like a reversed, “The Lion, the Witch, and the Wardrobe,” situation. Allistaire’s is still dealing with the realities of brokenness in her body. Even when all seems perfectly well with her, it is impossible to simply move your body from one place to another to do ordinary things like eat and drink and shower, without encountering, repeatedly, over and over, brokenness. We look forward to going but we know we will return shortly because they are not done mending Allistaire’s body. When one day we leave at the end of this treatment, we know that like many, it is possible that we will return, if not for the reappearance of this cancer, then perhaps another, or perhaps because of a failing kidney, or withered ovary, or who knows, a bad fall on her bike. Brokenness. We fight it and fight it, we sew and mend and bind up but our repairs fail and our best attempts fail in their ability to prevent brokenness in the first place. I don’t like brokenness. I don’t want to need binding up and I don’t want to face the fact that I have weak points, vulnerable places. I don’t want this for myself and I don’t want it for those I love, I don’t want it for anyone.
I know my words offer no resolution. As I was writing, a letter I wrote to my little nephew, Elijah, this past November comes to mind. Tomorrow I will offer my words from four months ago, not as a resolution, but as the beginning of sight the Lord has given me.
Just wanted you to know we are still praying for you and your family but especially for you to have the strength to deal with all that life is handing you right now. Your faith will sustain you as all your posts show that you have such great faith in God but it always helps to have everyone else praying for you and your family. We pray Allistaire will be able to go home soon and not every have to go back.
Psalm 34:17-18,”The righteous cry out and the Lord hears them; he delivers them from all their troubles. The Lord is close to the brokenhearted and saves those who are crushed in spirit..”
Psalm 147:3, “He heals the brokenhearted and binds up their wounds.”
Oh God, let us feel your closeness. Heal our hurting hearts and bind up our wounds, You, O God, are the Father of compassion and the God of all comfort who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. Strengthen us today in our weakness with the power of Christ that we may bring honor to you and comfort those you put in our paths.
This is my prayer for you and for all who love you who are acutely aware of the brokenness as well. Hallelujah, someday ALL that’s wrong will be righted again through Christ!
Praying. Thanks for being real. Brokeness, it is all around us. Thankful that He has already died for it, and one day it will all be mended, forever.
Wow, so true. I’ve been thinking about lately how we work so hard to make this world our home… Care-free, fun, comfortable and without anything bad. And then we’re reminded over and over again that this world isn’t meant to be our home. Things won’t get perminitely fixed here, and there’s constant threats to my “security” everyday. It is then that I remember this world is not our home. We’re just passn’ through. We found out a last week that Ed got a job in Texas and that we’re moving there on the 28th of this month. I was just in Dallas looking for a home, and was reminded of this again. I want a “perfect” home for my family….comfortable, safe, fun. Obviously those things aren’t bad within themselves, but I was reminded that no place is perfect and I won’t truly feel home until I am in heaven someday. And what a day that will be! But until then, I will pray you continue to have strength as you are in a place with an exceptional amount of brokenness. That you will have deep peace in your soul that would permeate to others. That you would have rest… Not just physical, but emotional as well. Will be praying for her tests and am so praising the Lord that the blood wasn’t something horrible. Hoping your sweet family gets to go home soon:)
Just wanted to let you know I am praying for you tonight. I keep thinking of a Psalm (it’s in the 50s but I can’t remember which one) that we listen to from our Seeds CD.. Cast your cares on the Lord, He will sustain you, He will sustain you. He will never never never never let the righteous fall. (Wish I could sing it to you. 🙂 I love all the nevers!) And thank you again for always sharing from your heart with honesty and detail. You are loved!!