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October
2
2020

October 2, 2020

We had an absolutely overwhelming response to our toy drive for Isla’s birthday month! The entire list sold out in less than 24 hours! Thank you, thank you, thank you! I’ve received messages from many who never got a chance to get to the list who would still like to contribute. Because of this, I’ve added some items to the list:

https://www.amazon.com/hz/wishlist/ls/2HWJQ8W3UUR6F/ref=nav_wishlist_lists_2?_encoding=UTF8&type=wishlist&fbclid=IwAR2DovghZlvyuLbNdrxZlxF7XtAuvExNvyyf6NMhwLahoKS6PaU7v9uwJ2o

I don’t want to overwhelm the small closet so I don’t want to collect too much beyond this. However, we can also still collect Amazon and Target gift cards. These can be given to the families in the unit for various needs. When Ellis was accompanying me to the hospital in his first few months, he was extremely colicky. It was awful. I remember in one of my lowest lows up until that point, the child life specialist handed me an Amazon gift card so I could buy him a swing. Such a simple gift was such a relief to me. I’m confident that just about every family in the unit could use this sort of help in one way or another.

These gift cards can be mailed to me at:
7804 W. Clarke St. 
Wauwatosa, WI 53213

Again, thank you so much for all of the love. Our hearts are full. 

October
1
2020

September 30, 2020

Tomorrow will be the beginning of October, Isla’s birthday month. It’s a time I’ve dreaded. Every milestone, event, special occasion without her has been— well, on those days I just don’t feel like I can breathe. 

Sawyer is determined to celebrate Isla on her birthday. So celebrate we will. He said we should do something that Isla would want to do. What would Isla want to do on her birthday? Go to the hospital of course! No, but really. Last year on her birthday, when given the choice of doing anything she wanted in her precious time at home, she said she wanted to go to the hospital to visit her friends (nurses and therapists). And that’s what we did. We visited her friends and she loved every minute of it. 

This month, in her honor, we would like to collect toys to bring to the MACC Fund Unit. This was Isla’s unit. The unit for cancers and other blood disorders. In this unit, they have “the toy closet”. This was everything to Isla. Any day that she had a difficult time, hard procedure, or needed a little extra something, the child life coordinator or a nurse would bring her to this sacred closet where she would pick out any toy she wanted. The girl liiiiived for the toy closet. Near the end of her treatment, she so had the unit wrapped around her pudgy little finger that she would straight out just say, “I’d like to go to the toy closet, please.” And they’d bring her immediately.

That girl. 

Anyway, this toy closet. We want to stock it up to brighten the days of all those kiddos fighting their fights on the fifth floor. We want to pack it out.

I’ve made an Amazon wish list with items for a variety of ages in the unit. There are kids there from infant to eighteen. We will deliver the items to the hospital the Friday before Isla’s birthday (10/23). Please DO NOT ORDER ANYTHING AFTER OCTOBER 20.

https://www.amazon.com/hz/wishlist/ls/2HWJQ8W3UUR6F/ref=nav_wishlist_lists_2?_encoding=UTF8&type=wishlist

Isla would love this so much.

August
19
2020

August 19, 2020

Today, at 6pm central time, we will be holding a private service to remember the light of Isla (“eye-la”). Because of COVID-19 restrictions we are limited to 50 people.  

If you would like to join us in spirit, please light a candle at 6pm in remembrance of this radiant child. 

Her time with us was far too short and her death a true tragedy. 

But may we remember her light, her deep, endless joy, her engaging spirit, her compassion, her humor, her maturity beyond her years, her zest, her stubborn passion, and her grit. 

She was everything I ever dreamed a daughter to be and so much more.

May the fire she lit in this world never go out. May it blaze.

Please join us tonight in remembering that fire. 

August
12
2020

August 12, 2020

Isla Arden Gentry

10/25/16- 8/11/20

 

No more pain.

No more pokes.

No more beeping.

No more “tubies”.

No more “BoBo”.

No more procedures.

No more blood.

No more platelets.

No more isolation.

No more swabs.

No more scans in the big doughnut.

No more medicines.

No more chocolate syrup.

No more “be careful”.

 

You are free. You are free. You are free.

 

Run wild, sweet girl. You are free.

 

**In lieu of flowers, we request you donate to the MACC Fund. Direct the donation to AML (Acute Myeloid Leukemia) research in memory of Isla. Pediatric cancer research is horrifically underfunded. Only 4% of federal funds toward cancer research goes to pediatric cancers. Even less to more rare cancers like Isla's. No child should have to fight like Isla. No family should suffer like this. 

 https://maccfund.org/donation/

August
11
2020

August 11, 2020

Despite all of her treatment, Isla's body is strong. This makes the dying slow. She is still fighting.

We continually think it's her time, but then she eventually takes that increasingly weak gasp of breath followed by a sigh.

We've said our goodbyes countless times. This is mentally exhausting. We had begun to prepare ourselves for the end, but not a drawn-out end. Nothing like this.

When you imagine your child's death bed, you imagine a quiet sacred place. Candles lit. Tears. Holding of the hand. Wiping their brow. Saying final goodbyes. The finality within a particular moment. 

This is just not our reality right now. That scenario has played out so many times.

You want to make that final breath sacred. You want to create the space for that. But at this point, I'm beginning to think that final breath will be when I'm sending a text or popping open a can of La Croix. 

Since being in this room for five days, I have:

  • Listened to the walnuts from our black walnut tree drop on the roof and roll off right over my head
  • Purchased shirts for the boys for Isla's memorial
  • Counted Isla's breaths per minute 
  • Drank a gimlet. Ate microwave popcorn.
  • Stared at her. Tried to remember her pre-cancer self.
  • Painted Isla's nails
  • Listened to a thunderstorm. Even the sky is angry in this moment. At least the sky gets it.
  • Googled "various cultural beliefs regarding afterlife" 
  • Pushed the pain pump button every 6 minutes while she's in respiratory distress. This happens frequently.
  • Planned how I would rework Sawyer and Isla's bedroom to be all Sawyer's
  • Scrolled Instagram
  • Monitored the gurgling sound coming from Isla's chest. That's the stuff that makes her feel like she's drowning. Giving medicine to keep it at bay.
  • Contacted people to break down and take away the kids' bunk bed when this is over
  • Updated our Meal Train. How many days do I even add? Will it be a burden or a therapeutic moving-on to begin cooking again? 
  • Stroked Isla's hair
  • Made a list of Ikea purchases for Sawyer's bedroom redo
  • Checked her body for bed sores. Repositioned her. 
  • Watched so many old videos of Isla on my phone. That little voice. Those dance moves. That terrible baby hair. I could never do anything with it. I wish I took more videos. 
  • Ordered Sawyer’s school supplies. Sent a text downstairs. “Have him pick which color folder he wants, and let me know.”
  • Stared at her trying to put together how I'm supposed to live after this. How I'm going to put one foot in front of the other each day. How I'm supposed to help Sawyer through this. Help Michael through this. How I'm going to help bring Isla into Ellis' heart.
  • Watched the "Unsolved Mysteries" reboot. Do I believe in alien life? Stop. Stop it now. 
  • Played various soundtracks of Isla's favorite movies for her
  • Monitored her slow change of color. The slow change in the shape of her face.
  • Wept
  • Cleaned the bedroom
  • Bought myself a dress from Target for the funeral. I'm not going to want to wear it ever again, after all.
  • Chose a cremation service
  • Allowed Sawyer to sit next to Isla watching videos of the construction of Ninjago lego sets. This is so not sacred. 
  • Stared at her feeling nothing
  • Monitored saliva buildup. Reposition her on her side with a towel to catch the drool.
  • Selected an urn
  • Read Isla her favorite books
  • Selected pictures for the picture slide show at Isla's memorial service. I narrowed it down to 500. Then down to 179. I have work to do.
  • Monitored fevers. Administered medicine for it. 
  • Said goodbye every time I've gone to sleep. Somehow, she's still there every time I wake to check her in the night. 
  • Wept
  • Contacted a friend to officiate the memorial service
  • Discussed ways to hold space for the memory of Isla within our home
  • Planned my first (and likely only ever) tattoo
  • Debated whether I brushed my teeth today
  • Applied mouth moisturizer in her mouth several times a day.
  • Moved her hair around, imagining it longer. What would she have looked like on her first day of preschool? She would have adored preschool.
  • Administered medications
  • Wept
  • Thought through the process of how I could possibly change her shirt. The collar is getting crusty. But, I don't know how we'd manage it, and I don't want to cause discomfort. I'm probably overthinking this.
  • Felt guilt for not weeping enough
  • She stopped breathing. It's been 30 seconds. This is it. This is the 50th time it's happened but this is actually it. I say goodbye for the 50th time. She takes a breath. 
  • Felt guilt with how distant I've been from my boys. How absorbed I've been with Isla. Ellis doesn't care. Sawyer feels it though. This is temporary but he doesn't understand. 
  • Noticed every breathing change. Is this it? 
  • Lit candles
  • Pondered whether those pavers have always been in the neighbors yard or if they just put those in 
  • Pushed people away. I just want to be alone. Really, the sound of any human voice makes me want to scream.
  • Stared at a wall hanging that is crooked. It's driving me crazy. 

I thought watching your child take their last breath would be the worst thing imaginable. I'm beginning to realize it's the watching of the dying that is the hardest. It's slow. There is only dread.

But she needs to be free. This girl needs to be free. 

August
8
2020

August 8, 2020

A couple days ago, we made the most loving, the most unimaginable, the most sickening of decisions for Isla. We took her off the life-extending chemo we’d been administering from home. Since my last post, things have only spiraled down more. There was far more bad than good. 

We put her on a PCA (pump that continually administers pain medicine into her central line) to better manage her pain. After a day of that being ineffective, we increased the PCA dose which finally seemed to get the pain under control for the first time in weeks. 

Yet, her agitation was growing far worse. Clearly, her agitation was not just related to the pain. End of life agitation is far more common in young children, but we also know that there is more at play for her. She has a spinal cord injury which we are pretty confident has been affecting her brain function over these few weeks. Her leukemia is progressing which will also affect her brain function. And then there is the loss of her mobility. This girl is the most vibrant child I have every interacted with. She is a force. This free force of a girl has just lost her independence with nothing left but her will. Her very, very strong will. It’s as if everything from within her spirit is screaming out with no one to hear it. I truly believe that has just tortured her throughout this time and only continues to grow worse.

She began to have several periods each day of being completely inconsolable. She lashed out at everyone around her. Nothing was right. Everything, down to the angle of the spout on her water bottle, had to be controlled. She began obsessively clinging to objects for security. A beach towel that had to be smoothed ritualistically before any period of rest. Her plush Ana doll had to be positioned just so across her elbow. The Daniel Tiger books- every single one of them- had to be stacked next to her. No, it’s the wrong order. No, wrong again. Meltdown. Screaming and incoherently rambling. No, still wrong! Moved around dozens of times until we ultimately come back to the way it started. Even on the one day when I became her chosen person to cling to, I sat next to her watching Aladdin. I stretched out my legs and crossed my ankles. “No! No, crossing legs!” I would uncross to keep the peace. Not worth the battle at this point. Several minutes later, I’d mindlessly cross them. “No!” For every movement, every presence, there was an acute awareness which tortured her mind. 

Finally, it was too much. This was wrong. This was selfish. We were holding onto the occasional moments when Isla peeked through this shroud of misery. Those were the moments that we clung to. That brought hope. But, the reality is that we are no longer going to see Isla as she once was. She is dying and this is an ugly process that has not only ravaged her body but her mind. We could no longer drag out the inevitable. It would be cruel. We took her off the chemo. We also increased her meds. 

For her agitation we had moved from Lorazepam to Clonidine to Haloperidol (an anti-psychotic). All ineffective. We are now using Phenobarbital which is causing her to sleep continually with only brief periods of waking marked with incoherent mumbling. For pain, Methadone, Dilaudid, Gapapentin. She was finally comfortable. 

But last night, we moved into a new phase. In the early evening, she began to have labored breathing. Her face was swollen. We could hear fluid in her lungs. She would have loud, raspy, strained breaths. These would be followed by a long period of apnea. So long that there were countless moments when Michael and I held our breaths with her- slowly moving to check her pulse. Then we’d see her chest slowly rise followed by a sudden, alarming, desperate intake of air. We turned on the oxygen tank to keep her more comfortable. We frequently pushed the button on her PCA to give her an extra bump of Dilaudid (known to also help with respiratory distress). 

We allowed family to come see her and say goodbye. At many points, when it was just the two of us, Michael and I wept over her. We spoke sweet words to her. We sang her favorite song, “Twinkle Twinkle Little Star”. Michael quoted her favorite books to her from memory. I read Anne of Green Gables to her- part of her basic education as a woman. We watched her lips foam. Her body convulse as she fought for another breath. There is nothing worse. 

We gave Sawyer the choice of seeing her. He wanted to. He helped us surround Isla with some of her favorite things on her bed- horses, her pink ball, magic wand, karaoke microphone, “Beary-Bear”, Ana, fairy wings, and scissors. He gently stroked her arm, mirroring what he observed from us.

He slept in our room with Michael’s dad. Michael and I stayed in Isla’s room with her all night. We only slept with the help of bourbon and melatonin.

Trying to make yourself sleep when you don’t know if you’ll wake to your child dead next to you. Now, that’s just something else. 

We slept fitfully. Checking her often. But somehow we slept. 

This morning we woke to her breathing with far more regularity. We can still hear the fluid in her lungs, but she isn’t fighting nearly as hard. 

For a short time, she had her eyes open though unable to track with them. They’d open and slowly close. Open. Wander. Slowly close. 

Michael sat next to her playing the Spongebob game on the iPad. In the hospital, she would always “play” it with him. He’d play, she’d tell him what to do. As he played this morning. We could see her hand slowly moving up, trying to tell him what to do next. In charge until the end, that girl. 

She is now sleeping peacefully. 

The nurse who checked in last night said that it could be hours or days. We can’t really know. Today could be her last. Or she may have more. For now, I’m hearing her sweet, peaceful breath.

We all need relief, but I’m just not ready for it. 

August
4
2020

August 4, 2020

I haven’t posted really much of anything since we’ve all been home after Isla’s most recent prognosis. The truth is, our time at home has been incredibly hard. To use the word “tortured” doesn’t feel too far off from our reality right now. 

Yes, I’ve kept up on Facebook and Instagram- highlighting the good. So many have done so much for our family since we’ve been home and we want to share our gratitude which is most conveniently done through the use of social media. However, as usually happens with social media, it’s the highlights. It’s never the full reality. This was not done to misrepresent our situation. It’s just that it feels wrong to photograph and give a play by play of Isla’s suffering in these last days. There’s been a lot of suffering.

Yet, I do find it important to be clear and open about our family’s journey through cancer. For a number of reasons, that is how we’ve chosen to be up to this point. 

Yes, we’ve had some wonderful experiences. Trip to Cape Cod (funded by friends and family), a carriage ride through our neighborhood, backyard camping, trips to the lake, horseback riding. But the truth is that this time at home has been incredibly heartbreaking for our family. 

Isla is in a great deal of pain. She is currently on 15 different medicines daily for basic comfort. I’ve worked to create a spreadsheet of her daily schedule to work out the perfect timing of these as they often make her throw up. Despite this heavy regimen of medication, she is still nowhere near comfortable. They continue to increase the doses, but they just can’t keep up. They can’t increase the doses too quickly so she is always a few steps ahead of them. They have quadrupled the opioids but it’s not enough. We have found ourselves administering a short acting, stronger version of morphine hourly and it’s not enough. She holds her neck stiff most of the time- body guarding from pain. We’ve increased the meds so much that they’ve brought tanks of oxygen into our house as she now runs the risk of the medicine decreasing her ability to breathe. I’m almost daily changing the spreadsheet as her palliative care doctor tweaks and adds to her pain plan. 

She refuses to use her wheelchair because she wants to be independent. When she is willing to get out of bed- which is becoming increasingly more rare- she insists on crawling or walking with assistance. This is painful for her, but she does it. She’s the most stubborn person I know. 

The most gut wrenching part of all of this- the change in her personality. She is no longer Isla. We never quite know the cause. It’s likely a combination of factors. Sometimes more one than the other. Pain, loss of mobility, removal from the hospital- an environment that became her home for more than a quarter of her life, an ever-changing regimen of strong medications, spinal cord injury potentially affecting her brain, progression of the disease affecting cognitive function, loss of control, being a three year old in an ever-changing situation that she just doesn’t understand.

She is angry. It is rare that she speaks in a calm or reasonably kind voice. It’s yelling. It’s demanding. She snaps at us more than she speaks. This is not her. If we walk past a tv she is watching, “Crawl!”, she yells. It’s been days since she has let me near her. She refuses to be around me. I walk into a room. “Go away! I don’t want you here. Don’t touch me! When are you going to just leave me?!” She generally picks one person each day to latch on to. Usually, Michael or a grandparent. I’ve only been chosen a couple of times. Sawyer is always rejected, yelled at, thrown out. The house is tense and weary and sad.

This is not how this is supposed to be.

This has made parenting a nightmare. There are few moments when I don’t feel like I’m failing her in some way. She won’t accept me anymore. I try to be firm. That backfires. I try to be distant. That’s just lonely and painful and wrong. I try to force myself in. I’m rejected with force. I try to manipulate my way into a situation to be near her. Sometimes it works for a few minutes and then, “Why are you here? When are you going to go downstairs?”

This is no longer her and I don’t know how to find her anymore. 

I feel as though there has already been a death. I no longer have her. I’m just waiting for the second death now. 

This is all wrong. 

Sometimes her behaviors are just bizarre and it just feels sad. The other day, some friends hired a balloon artist to come to our yard for a mini socially distant/masked party for Isla. She refused to come outside. We finally got her to come out. She would only come out if she could lay on top of Michael with a beach towel over her. It was an 85 degree, humid day. She fell asleep on him, sweating through the towel and through Michael’s clothes. We tried to wake her to see the balloons after a time, and she refused to look. We eventually got her to go to the swing set to sit on the swing. She chose one person to push her for about 45 minutes or so. The whole time, she kept the beach towel over her head and face. She wanted “privacy”. This is how she chose to get it. In a yard full of people she has always loved, on a hot summer day, sitting in a swing with a towel over her face. Behavior that is not her.

Where did Isla go?

There are countless instances from this month that I could relay about bizarre behavior, rejection, rage, and sadness. It’s just too painful though. 

A few days ago, she told me, “I just don’t like anything anymore. I don’t like home. I want to go back to the hospital. I don’t like people. I don’t like you. I don’t like Daddy. I don’t like Sawyer. I don’t like Ellis. I don’t like Aunt Liz. I don’t like Uncle Ian. I don’t like Nana. I don’t like Pops. I don’t like Grandma. I don’t like Grandpa. I don’t like Felicity. I don’t like Niko...” She just kept going. Listing every person she knows. 

She is just sad, in pain, and tortured.
This is not peaceful.
This is hell.

Knowing your child will die soon. But not knowing when. Watching them suffer not only physically, but mentally. It’s wrong. It’s not fair. After all she has gone through. After this long, long fight, this is what we get. 

So, no. No, we are not doing well right now. We are finding ways to create peace in our days. Often and sadly, removed from her. 

I should note, we would not be able to do this without the massive amount of support from Michael’s family who are staying in town to help us. We generally require four adults in the house to meet all the needs. It’s the only way, Michael or I could get some moments of breathing space. 

Right now, we need relief from this. So does she. It’s all wrong and not fair.

July
23
2020

July 23, 2019

My boys, 

One year ago today, your sister was diagnosed with Acute Myeloid Leukemia. I don’t I know if I can ever really tell the story of this year to you. You’ve lived through it, but you don’t know all there was. Sawyer, we’ve protected you from so much knowing that with what you don’t understand... well it’s probably for the best. We did not do this year right by you; but as so many parent’s do, we tried. And Ellis, you were born into this chaos. Blissfully ignorant of the hardship seeping into the cracks of your surroundings, rotting out the structure until there is nothing left but the ruins of what was- waiting to be rebuilt. You are a drool covered, chatting baby experiencing the world for the first time. To you, there is nothing but goodness in the world. All you will know of this year is what we share with you and what we share of your sister- the sister you will never really know. I want to share it all with you- the good, the joyful, the bad, the painful. I can never do this experience or your sister justice with this writing. But, you deserve to be told of the experience that greatly makes up the fabric of your family. What has changed, broken, hardened, softened, built, and rebuilt us. Most of all, Isla Arden- our Isla Bear- deserves to have her story told. 

 

In July of 2019, our family was simple. Your dad was an attorney specializing in employment law, working in litigation for a large law firm in Milwaukee. I had taken some time off of teaching to focus on caring for my kids in the home- frequently agonizing over the question of “what’s next for me?” Grad school was always an idea on the table, but I struggled to focus on just one area to commit to. I fought the temptation to compare our simple and traditional setup with other women I respected. I know I can do more but what? I want to do it right. And I also don’t want to give up this precious time with you in your youngest years. We had recently bought our first home, were working on getting out of student loan debt, and had our third child on the way. 

 

Your dad had is first big trial in March of that year which took up a great deal of his time. We were looking forward to a slower pace that summer. Nothing but a few family trips, beer gardens with friends, the backyard sprinkler, and our excitement for the new addition to our family to keep us occupied. Slow and simple would be our mantra for this season. 

 

One Wednesday morning in the middle of July, I texted my friend, Emily, to go to the zoo with our kids. We met up and did our usual rounds of the animals, the visit getting cut short, per usual, by the nearing lunch hour, naps, and the summer heat. We managed to achieve one forced and grumpy looking photo by some gorilla statues and made it onto the zoo train before the meltdowns commenced.

 

I headed home with two reasonably happy kids. Feeling proud of myself for having braved the heat and the whining while 7.5 months pregnant. One thing I could feel accomplished about today-check. 

 

We rushed in through the door. Nap time was nearing. All I could think about was getting these kids down for a nap so I could put my feet up for a few minutes. They were swollen from the heat and I just needed a minute. But first they need to be fed. Mac and cheese it is. Water on to boil. “Sawyer, can you actually get your shoes into the closet and not two feet outside of the closet? Isla, just pull the shoes off. No, sit down first. It’s easier that way. You’ve done this a hundred times.” I go over to sit her on my lap, trying to wiggle them off her feet. Her feet are sweaty and seem to have grown. Oh, these really are tight.  

 

As I pry the too-tight shoes off her chubby feet, I notice some mud splattered on her legs. I try to scrape it off with my nail. Weird. That’s really stuck on her. I lick my thumb to wipe her leg. Don’t judge, every mom does that. Not coming off. It’s on her thigh too.  Are these freckles? They are on her arms too. No, this is more like a rash. I lift her shirt to look at her belly. The tiny dots are on her chest too. I look closer. This is like a rash but it’s not red. They are pin-point sized purple dots. Almost like the tiniest of bruises, but all over. Actually, she does have a lot of bruises now that I look at her. Especially a big blue one by her foot. Oh, and her hand. Sawyer must be playing really rough with her again. This is weird. Maybe her iron is low. She’s been really picky lately. Not eating a whole lot lately at all actually. But what if it’s something else? Calm down, it’s always fine. 

 

I plop Isla into a chair and finish making lunch. I move into the living room and pull out my laptop. Google search: “pin-point purple rash”. Oh, it’s all sorts of bad things. ITP and HSP are the two main things I’m coming across. They both sound really scary. It’s never as bad as you think it is. She’s fine. I keep googling to find the more likely of the candidates. Well, there’s leukemia. Obviously, that’s not it. Meningitis. Okay, no. This rash looks a lot like the pictures of petechiae. They always have the most exaggerated pictures on Google images though. It’s hard to tell what’s what. Okay, just stop it already. Just call the nurse at the doctor’s office, describe it, and I’m sure they’ll just tell you to monitor it. They always do.

 

I text your dad pictures of the rash. I text Emily too. She’s good at talking me down. Both of them aren’t too concerned. Probably some sort of allergic reaction to something from playing outside. She has always had very sensitive skin. “But if it would make you feel better, just call the nurse and I’m sure they will have you monitor it, per usual.” At least we’re on the same page with it. 

 

I call Tosa Pediatrics and describe the rash. They ask if she has any other symptoms. I’m reaching for anything. I don’t want to sound like the overly sensitive mom who freaks out over every little rash. I want to be taken seriously. “Well, she spiked a random fever last week.” I noticed it when I was heading out the door for a date night. I asked my mom to monitor it since she seemed fine otherwise and it had gone away by the time we got home. “But that’s probably unrelated.” They asked me to bring her in so they could get a better look at it, because yes, this doesn’t really sound like an ordinary rash. Oh good, I’m not the nut on the phone today.

 

Our usual doctor is in, so we have a doctor I’m unfamiliar with. He takes a look at her and she seems generally healthy to him. But yes, he agrees this is a strange rash. His leaning is that it’s petechiae, but he’d like another doctor to take a look at it to confirm his thought. After all, they don’t often see this sort of thing. Oh great, we’re the rare case. This appointment is beginning to take much longer than expected. The second doctor comes in. She agrees with him. They leave to look at some research. I’ve never had this happen. For real? How difficult can this be? I should have brought snacks. 

 

The doctor returns yet again. Dear Lord, it’s been over an hour now. The doctor asks me if I Googled the rash. I’m a mom, in the year 2019. Yes, that’s what we do. “Oh, just a bit,” I respond with a nervous smile. He says that yes, he thinks it’s petechiae and that he’s guessing I probably came across some scary things. Leukemia, meningitis, and other incredibly rare things like that. No, he’s confident it’s not one of those. She would look much, much worse if she was suffering from a serious condition like that. “I’m 99.99% sure it’s either ITP or HSP” -none of which is particularly good, by the way- “but we should do a blood test just to cover all our bases and rule out the scary stuff. Just so we can all sleep well tonight knowing we did our due diligence. You’ll hear back from the lab when they get the results. Sometime tomorrow, the office will get in contact with you to go over next steps depending on the results. Chances are, she’ll just require an antibiotic. But, just to play it safe, don’t have Isla doing anything too rough and tumble until we get her lab results. Just have a quiet movie night.” 

 

He sends us to Children’s Hospital of Wisconsin for some blood tests. Conjuring all the wisdom I’ve gathered up this point, I grab some suckers from the reception desk on our way out the door. We could be in for a long afternoon. On the way to Children’s Hospital, I call your dad. “When you leave work, can you just meet us at the hospital? I have no form of entertainment with me and these kids (and me) are hungry and crabby.” Isla drops her sucker in the parking lot and starts crying. Excellent. 

 

We sit in the waiting room watching Mickey Mouse Clubhouse. I text the pictures to my friend, Sarah, who is in her residency. What does she thinkShe’s always the unfortunate recipient of my panicked texts. I can be such a bad friend sometimes. But, she loves me. She is thinking ITP as well, but is curious about the blood work. 

 

After a long wait, we get in for the blood tests. Isla gets a series of pokes for what seems like an ungodly number of samples. 

 

Your dad comes in at the tail end of the appointment, sweaty from biking in the heat, to find three living disasters who need to be fed. Off to Bel-Aire Cantina we go for some tacos. Two dollar Tuesday after all. What if it’s ITP or HSP? Those sound so scary. How could this be happening to our little family? And right now? I’m so very pregnant. No. No. No. I cannot handle this type of stress right now. I just had a total breakdown last week. Isla has been sooo clingy lately- wanting to be held all the time. It’s been making my sciatic back pain worse again. And the kids have been arguing. And I can’t imagine adding a third into what already feels like more than I can handle. And now this?! A long series of doctor appointments and antibiotics to deal with?! I just can’t possibly handle more on my plate. 

 

We head home. Your dad takes you, Sawyer, and Isla down to the basement for a movie night. Moanaor Jungle Book? Maybe Beauty and the Beast? Can’t decide; Magic School Bus it is. I get in the shower, the place I always go to recharge. No one can talk to me or need me there. I relax feeling the warm water drip down my swollen belly. Everything is going to be fine. You always imagine things to be so much worse than they really are. This is just a bad combination of her sensitive skin and my pregnancy hormones making me freak out. 

 

I step out of the shower and dry off. From the corner of my eye, I see my phone light up. Seven missed calls and a text message. All from the same number. An unknown caller. Voicemail. I click on the voicemail. It’s the doctor. He’s asking me to call him immediately. Why is the doctor calling me? Isn’t it supposed to be the lab? I check the text. He has her lab results and wants me to call him back on his cell phone. Weird. That’s weirdly personal for a doctor. My brain is mush and I hate talking on the phone. I call your dad upstairs and put the doctor on speaker phone because I don’t want to be responsible for remembering any “next steps” he relays to me. It’s 7:30pm and this mama wants to punch out for the day. 

 

He asks us to sit down. We sit on the couch feeling concerned. In a shaky voice, he calmly says, “Isla has leukemia. You need to come to the emergency room right away.” Long pause. “I’m so sorry. I never thought this would be the result.” We need you to come in right away. Long pause. Things are said between your dad and the doctor, I think. I don’t know. My focus is held fast on the cabled pattern of our fire place vent. It shifts to the rug. That flower is not symmetrical with the flower on the other side of the rug. I remember our friend joking about the quadrants of our rug he discovered. That’s what you get from a Birch Lane rug. Leukemia. No. I don’t even know what that is. It’s bad. More words are spoken. They might as well be in a different language. I’m still staring at the flower. Then the other flower. I feel heat. I run to the bathroom and throw up. I keep throwing up. It just keeps coming. My hard belly hits the edge of the toilet as I heave. I’m sweating. I pause and your dad comes over with the phone. He’s crying and shaking, but I can’t process what’s happening with him. It’s all too much. As I sit on the floor waiting for the next wave, I hear the doctor, “...plan to stay overnight. This is going to be a very long night. I’m so sorry. You need to leave for the hospital now.” 

 

We hang up. 

 

We are weeping. Things are spinning. We hear the kids still watching their movie downstairs. I don’t know what we said or what we didn’t say. We are both in a dream and are struggling to be the adults in the room. There is no time. 

 

I pull together the same sort of desperate, hard focus a mother in labor has when she realizes it’s time to move to the hospital for the birth. She is scared but she knows she has to move. Only this isn’t for new life. Is this for a death?

 

I pull on leggings and a blue v-neck. I’ve always had a weird way of remembering what everyone was wearing in random moments of my life. We throw a few basics in a bag for Isla, maybe we should grab her Beary-bear and the iPad. It’s almost her bedtime. Is she supposed to sleep at the hospital? 

 

Shit. We have another kid. Sorry, Sawyer. In moments like these, that sort of thing happens. What are we supposed to do with Sawyer? We’ll tell him he’s going to have a fun surprise sleepover. He’ll love it. We call my mom’s phone. No answer. We call her landline. No answer. We call two different friends. No answer. We call Mari. She answers. I can still clearly hear Michael say, “Hi. I need you to know I’m not joking right now. This isn’t a joke. Isla has leukemia.” His voice cracks and he breaks down in tears. It’s the first time he’s said the words aloud and they feel all wrong. “Can Sawyer sleep at your house tonight?” I hear the urgency on the other end of the phone. Things are said. She’s on her way. We pack for Sawyer. 

 

A bit later, Mari and Joel’s black car pulls up. Their sweet child is sitting inside ignorant of the fear on her parents’ faces- excited for a sleepover with a friend. Sawyer bounds out of the house matching her smile. Joel meets him with a smile. Mari is walking to me. Goes straight in to hug me. I weep. I weep and I weep and I weep. I crumble down to the grass in my yard. Now all the neighborhood can see our agony. I don’t care. I weep and I weep and I gag. Don’t throw up in the yard. That, you cannot do. 

 

Sawyer is gone. We pack Isla into the car for special time with Mama and Daddy at the hospital. She’s excited but confused. But she’s getting all our attention so she’s good with that. 

 

We enter the emergency room doors and are ushered in to sit down. They have clearly been notified to expect our arrival. I’m still confused about why this is all so urgent and time sensitive. I know leukemia is really bad but not how bad. I know nothing. We state that we have been told our child has leukemia and “are we staying overnight here?” We really are moving between terror and confusion and this frozen sense of time at a mind boggling rate. 

 

They rush us into triage. I think there are two nurses in the room. Another wave of terror hits me. I grab at a bed pan or did someone hand it to me? I heave into it on the floor. I hit that frozen time thing again. 

 

I stand again. One of the nurses wraps her arms around me for a huge, firm, not-letting-you-go-any-time-soon hug. She finally pulls away and with tears in her eyes explains that she knows exactly what we are feeling right now and she’s so sorry we are experiencing this nightmare. Her daughter was diagnosed with leukemia at nine months old. I weep on her. I’m too scared to ask if her daughter is still alive.

 

We are brought back to a room. It is back there that time really becomes mush. The number of blood tests, the number of pokes Isla gets feels countless. Truly, it felt like every five minutes, she was receiving yet another blood test. How could they possibly need this much blood. She gets an IV inserted for fluids. More pokes. She receives her first blood transfusion. More pokes. Why does she even need blood? What even is leukemia? I refuse to Google. Google was to the rescue for getting her diagnosed, but I refuse to do it ever again. 

 

Nurses come in with toys and bubbles and bracelets that covered Isla’s entire arm. That poor little arm with all the bandaids. She is loving the attention. She is laughing with the nurses 

 

We are just tired. Can anyone please answer our questions? What is leukemia? How bad is this? What is the survival rate? Is she going to be one of those kids with no hair? Are we just going to be in the hospital for tonight? What is the survival rate? How long is treatment? Oh, and what’s the survival rate? 

 

That nurse from triage comes back to our room. Her shift had ended and she wanted to show us her daughter. Her daughter is now Isla’s age and is thriving. She was diagnosed with AML. We aren’t sure yet what Isla has, but this girl survived and is thriving. I hold to that. I smile through tears down at that sweet little red head showing off her biceps. Isla can do it too. I’m not sure what she can do because I don’t know what needs to be done or what the hell leukemia even is. But, if this girl can do it. My Isla Bear can do it too. We hug again and she leaves. 

 

A doctor comes in and introduces herself. She’s a fellow in her last year of fellowship. Already a pediatrician but now working on specializing in oncology. So she’s a legit doctor. That’s good. Can she answer our questions now? We fire away. And she explains a lot. 

 

Leukemia is cancer.

 

I didn’t know that. I knew it was bad. But this is cancer. That is just... it’s cancer. 

 

Chemotherapy. Mutations. ALL. AML. Bone marrow. Blasts. Neutrophils. Lumbar puncture. ANC. 

 

A lot was dumped on us at once and no, she could not answer about Isla’s chance of survival. Somewhere between 20-90%. It all depends on her type and her mutations within that type. That’s not helpful. We will learn more in the coming weeks. Weeks. Tomorrow she will have a bone marrow aspirate. She will receive anesthesia and have a long needle inserted into her hip. The sample of marrow they extract will tell us the percentage of leukemia in her marrow (which would turn out to be 80-something percent), the type of leukemia, and, over the coming weeks, her mutations. The mutations will tell us whether she is low, standard, or high risk. She’ll also begin chemotherapy in two days. 

 

Where are we? Is this happening? How am I old enough to be doing this? Is Isla going to die? How am I going to have a baby in 1.5 months? How bad is it? Is her hair going to fall out? Stop that. It’s fine. Why are you so worried about that? What are we going to do with Sawyer? Will I lose my one daughter? I’ve always dreamed of having a daughter- I consider it a privilege to have a daughter. And I might lose her. Is this stress going to cause a miscarriage? Is Sawyer going to be okay without his sister? How long are we going to be in the hospital? Is this even a good hospital? Are we supposed to do research to find the best of the best hospital? What should a good parent be doing right now? I need to do cancer the right way. Why didn’t I notice that her lips were getting pale? I was just commenting on how tan she was looking. But, that was a tan, it was the absence of color in her skin. Are Michael and I going to divorce? The divorce rate for this kind of thing is horrible. Oh god, I can’t lose my child AND my marriage. What is the survival rate? I can do hard things. But what is the survival rate?

 

Around 2am, we get up to our room in the inpatient unit- the MACC Fund Unit. A nurse hands me water. “You need to drink this. You need to take care of that baby too.” I go into the bathroom and throw up more. Then I drink the water. 

 

That was Tuesday. Then came Wednesday.