Journal

Journal entry by Autumn Gentry

Rash 
Isla’s rash worsened over the weekend. The itchiness comes and goes, but isn’t bothering her too terribly much. It’s visually alarming- basically looks like she has measles or chickenpox- but in reality it’s nothing to be concerned about. It does not in any way indicate an underlying issue. 
 
I met with Isla’s Chicago oncologist today to discuss her progress and the path moving forward:

Progress
Isla’s last three CBC’s (lab work) have shown that she now has 0% blasts!!!! This is such welcome news though it does not promise anything about her marrow. Blasts in the blood are sort of a spillover from the marrow. We will not know her true progress until her bone marrow aspirate at the end of the cycle. However, this lab work does continue to tell us that the Flotetuzumab is accurately targeting her type of leukemia, generally reducing it, and certainly preventing the leukemia from multiplying. 

The fact that Isla is handling this treatment well- her only side effect being a rash- means that she can continue receiving the maximum dose of the drug. Other participants have not been so fortunate. Two out of the six participants in the study have already had to drop out or reduce the dosing because their hearts (which were already weakened before the study) couldn’t handle the treatment. Isla’s heart is still strong and she is handling the medicine so well. If she were to have any major issues with the dosing, she should likely have had them by now. Her maintaining this high dose will give her the most bang for her buck with this treatment. 

Timeline
Isla will receive two more weeks of the Flotetuzumab infusion. June 10 will be her final dose of the drug. That same day, she will have a bone marrow aspirate and possibly a lumbar puncture. At this point, she will continue receiving the medicine even though the cycle is technically over. We want her in treatment basically up until the minute of getting a transplant. Her form of leukemia has proven to be extremely aggressive and will begin growing again as soon as she isn’t in treatment. On June 11, we should get her bone marrow results.

Our team in Wisconsin consulted with the head of the national study of this drug. He agrees with our Chicago team that if Isla’s percentage of leukemia is reduced to a level between .02% and 5%, we should do another round of the Flotetuzumab. If her leukemia is responsive enough to this drug to move from 24% to this low level, it means it’s working and working well. That would point us toward giving it another month to hopefully wipe the leukemia out. If we transplant when she is anywhere between .02% and 5% residual disease, her chance of relapse is 70-80% so it really is worth it to push to get her below .02%.

Of course, if we get her to be MRD negative (.02% or less disease), we will absolutely transplant immediately. And by immediately, I mean they will continue giving her the Flotetuzumab here in Chicago while she participates in the preliminary transplant testing. As soon as the testing is complete, she would stop the infusion, rush back to Milwaukee, and immediately begin conditioning (high dose of chemo prior to transplant) at Children’s Wisconsin. 

So basically:
If she’s MRD negative, we transplant immediately. 
If she’s .02%- 5% residual disease, we’ll be here in Chicago for another 28 day cycle.

Another 28 days would be awful, but we not only need to get her to transplant but ensure the transplant is successful. 

If Isla can transplant next month, she would be the first patient with pediatric AML to receive a transplant after this form of immunotherapy. As messed up as it sounds, it really is pretty cool to be able to contribute to research in pediatric AML. The options for kids like Isla are so limited because the research just isn’t there. There is not enough funding (only 4% of the federal budget toward cancer research goes to childhood cancers) and Isla’s cancer is rare.

I hate that she is going through this; but, if there is a silver lining, it’s that she is bravely blazing a trail for other children to follow. Children whose bodies are being ravaged by this same mysterious disease. Children whose only option is toxic chemotherapy. A therapy that makes kids so ill, weakens their immune system, reeks havoc on their organs, makes their hair fall out, leaves them vulnerable to secondary cancers, robs them of their desire to eat, requires them to consume high doses of steroids, antibiotics and anti-fungals for prolonged periods of time, reduces fertility, and reduces cognitive function.

I look forward to a world where children with cancer have options. Options that might someday include immunotherapy- a therapy that helps the child to fight the disease with the use of their own immune system. I’m so proud to have my daughter be a pioneer in immunotherapy. I wish our circumstances were so very different, but this path has brought us here. My deep hope is that immunotherapy pulls through for Isla and that her use of it will help 1000’s of other children to follow.
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Journal entry by Autumn Gentry

Sleep
Isla is finally back to her regular sleep patterns. Thank goodness. To help prevent any adverse reactions to the new high dose of Flotetuzumab, she’s been on round the clock Benadryl for the last 2 days. I’m sure this helped the cause, but moving forward she will no longer be receiving scheduled Benadryl. We’re hoping this doesn’t change her sleep patterns again. 

Rash
Her rash is still pretty bad but is no longer terribly itchy. It may have been relieved by all that Benadryl so we are hoping its removal won’t cause another flare up. 

Numbers
Her blasts are still hanging out around 1%. Her ANC and white blood cell count continue to fluctuate.

I once heard Kate Bowler, author of Everything Happens for a Reason: And Other Lies I’ve Loved, say that life before cancer is linear and life after cancer just isn’t. Yes, yes to that.

Before cancer, you do a thing, then the next thing which leads you to the next thing and you continue to think ahead to the next thing.

After cancer, you no longer think of life as linear. You think of it as cyclical. Things falls apart, you fall apart, you pick up, do a coping thing, you do another thing pretending to be normal, you start holding your breath as you start to think about that test, you hold your breath even tighter because nothing else matters, you hold your breath and don’t move because you are grounded in terror, the test happens, you get the result, the cycle starts over.

There really is no looking ahead into the future. 
There is no thinking about which masters program I want to pursue.
There is no planning our 10 year anniversary this summer.
There is no road trip or home renovation to look toward.
There is no next thing moving us forward. There is only this cycle. This hanging on to the next test.

It will not always be this way or perhaps not so acutely.

But for now, we fall apart, we fall apart some more, we pick up, we make a plan to try to stop the falling apart, then we move through a few weeks trying to pretend like this isn’t happening- focusing in on the day to day grind, the inconveniences, the exhaustion, the loneliness, the one on one time with the kids, but never the big picture. The big picture is too much to think about everyday. We focus in on the small joys, the absurdity, and even the petty things. It’s a way to survive. Maybe it’s normalizing? Hell, it’s normalizing to get irritated with my three year old when I’m stuck in the same room with her 24 hours/day and 5 days/week with very little to do and limited mobility. It feels good to be irritated with her sometimes and not just mourning what has been lost in her life and what could happen. Normalizing. Then we see some numbers and freeze our pretending and try not to think too hard about them. Just keep our heads down is what we need to do. Make our way through each day. Focus on the task at hand. Then we get closer to the test. We tense up. What if this is our last shot at this? What happens next? Are we out of options? We individually have our break downs- sometimes lining up and sometimes at different times than the other. We take turns being the strong one. And then, we crawl the last few feet to the finish line of the cycle where we find the test looming. But there is no relief there. The finish line is not only the test but the waiting for the result. Did it work? Was it all worth it? Is it worse? The news. After that marathon when there should be relief, there is none to be had. Instead, we fall back into the next run- following the same pattern as the month before.

We’ve done ten months of this. Ten marathons. In our current cycle, we are in the “pretend that we’re normal” phase. But today, I did have a momentary panic. Why isn’t she at 0% yet? Is this not working? It has to work.

Right now, I’m putting this fear out there into the world. That fear is there right now. But, I’m going home for the weekend. I’m going to lift my head up, listen to the rain, put my hands in the earth, plant some things, enjoy the laughter of my boys and the warmth of the sunshine. There is enough worry waiting at the hospital for me. I’ll get back to it on Monday. I’ll deal with it then. But today, I need to go home to my boys. They need their mama too.

Journal entry by Autumn Gentry

Third sleepless night in a row. This time, Isla actually did fall asleep at her usual 8pm but woke at 11:30pm with a fever. It was only 100.4, but any fever is always an “all hands on deck” situation. Labs were drawn, medicine given, doctor called, nurse practitioner visited, frequent checking of vitals. It was all down hill from there. By the time the commotion was over, Isla couldn’t fall back asleep. We were up until 4:30am with her wide awake. So we’re still running on no sleep. The protocol for this trial is that when there is a fever, they must reduce the Flotetuzumab by 20% and administer antibiotics until it is resolved. The fever passed this morning so her dosing was soon restored to yesterday’s level. 

As a reminder, the goal of this trial is to test the safety of dosing levels. The team began her treatment with a very low dose of Flotetuzumab and slowly increased the dose over the course of the week. Once the maximum dose is achieved, she will maintain that dose throughout the rest of the month unless it proves to be unsafe for her. We are in what they believe to be the most risky days of the treatment as she reached the highest dosing level yesterday. They believe her fever was likely an immune response to this high dose level. To help prevent an adverse reaction while her body continues to adjust, the protocol is for her to receive scheduled dosing of Tylenol, Benadryl and Zyrtec for the next 48 hours. In other words, it’s going to be a sleepy and lazy but, hopefully, safe couple of days. 

Oh, and she still has a really bad, really itchy rash that is just not letting up. So she’s tired and itchy. My former self would be absolutely horrified with the amount of screen time this kid is getting right now. My fellow humans, this is what we call survival this week.

Journal entry by Autumn Gentry

The Weekend
I think I can safely say that our adjustment period is over. Michael stayed with Isla over the weekend which gave her something exciting to look forward to. Michael and I balance each other well in parenting as we are very much opposites in a number of ways. We both bring something different to the table and it works. This weekend, Isla was needing some rough play, silly songs, and silliness. And he brought her the circus. He is an incredible dad and was just what she needed. 

She also just needed familiar faces. Some predictability. This whole time, she’s had new nurses everyday; but this weekend, she had the same nurse three days in a row. And she just so happened to be amazing. She danced with Isla, orchestrated a one-leg-hopping Olympics complete with a gold medal, laughed at all her antics, and happily dove into Isla’s play. She really went above and beyond with her and we were so grateful. When I came back to the hospital on Sunday evening, Isla was a whole new kid- back to her usual giggly, goofy, fun-loving, sweet self. 

Reactions
Isla is continuing to react fairly well to the Flotetuzumab with minimal side effects. She has developed a deep, dark red rash all over body that began presenting on her first day of dosing. The team attributed it to the medicine but didn’t treat it as it hadn’t become bothersome to her. However, today the spots are really bothering her as they’ve become very itchy. Now, she’s hanging out pants-less (although that’s what she prefers most days anyway), and we are beginning to apply some topical creams to hopefully ease the irritation. This poor girl just always has such sensitive skin.

One more other thing. Two nights ago, she couldn’t sleep. She couldn’t sleep as in I put her to bed at 8 and she didn’t fall asleep until 1:30am. And only with the help of melatonin. Last night, she was having belly pain which kept her awake until 12:00am. Melatonin didn’t work so they finally knocked her out with Benadryl after a dose of Tylenol. Obviously, we sleep in the same room so these nights have been no fun for anyone involved. We are tired. The team doesn’t think insomnia is a side effect of the medicine; but then again, we don’t know that much about this medicine. Hoping, hoping, hoping this was just a weird couple of days and things get back to normal soon. Did I mention I’m tired? I’m tired.

Journal entry by Autumn Gentry

We made it through our first few days here in Chicago. They’ve been rough. Real rough.

Our Day Isla is participating in a clinical trial so the days look very different from what she’s known. She has her central line (chest), her NG tube (nose), and her PICC line (arm). Additionally, she has stickers all over her back which continually monitor her heart rate. The lines come out from under her shirt and they are attached to a machine on her IV pole. She is receiving a continual infusion of the Flotetuzumab so there is a line coming from her central line that also attaches to the pole. She has a sticker wrapped around her toe to monitor the amount of oxygen in her blood. She has a blood pressure cuff wrapped around her arm all night and 50% percent of the day. She is receiving fluids so there is yet another line connecting to the other lumen of her central line. What I’m trying to say here is this: she has very limited mobility. She is connected in every which way. We try to move about the room but it’s a huge to-do. I have to detach monitors and come up with makeshift systems to move her even a few feet. She is constantly tangled in cords and tubes. She is so over it with all the monitors and we’re only on day three. If I have an all out breakdown in this hospital it will likely be a result of all these damn cords tangled everywhere.

Every day, around 9:30, they begin taking vitals and pre-medicating her for the daily increase in the Flotetuzumab infusion. This includes Benadryl and Zantac which both make her extremely sleepy. Once these are in her system, it’s all over- she just wants to lay and zone out the rest of the morning. At 10am, the increased dose begins. Again, this is a trial so there are about 9 people, on average, hovering over Isla and her machines at once- trying to follow the new protocols in their clinical trial manuals and cross checking information. It’s a thing, and it’s so very overwhelming. After they increase the infusion, they have to take her vitals (blood pressure, heart rate, temperature, etc.) every 15 minutes for the first 2 hours. After this, it moves to every 30 min. Then every hour. Then every 2 hours. Then every 4 hours. The next day, that all starts over again.

Not only is Isla hooked up to all of these cords and tubes, she has people attached to her at all times. We really have very little space or privacy. It will be like this for at lease the first couple of weeks as they increase the dose on a daily basis. They will eventually- hopefully- reach the desired dose and things will chill out; but, until then, people will hover.

Current Numbers As of today, we are hopeful that the immunotherapy might be doing something. Comparing 5/13 and 5/16: Her ANC moved from 131 to 987; white bloods cells moved from .77 to 1.05; blasts moved from 13% to 1%. We are hopeful that this is a result of the Flotetuzumab attracting her t-cells to her leukemia so they can kill the leukemia and make room for white blood cell recovery. We want to see her ANC and white blood cell count rising and her blasts eliminated. We will not truly know what is happening in her marrow until she has a bone marrow aspirate at the end of the month, but these numbers do make us hopeful that something could be happening in there. 

Isla Isla has had an extraordinarily hard time adjusting. As we all know, Isla loved her hospital and nurses, loved playing and was a little ball of energy there. Since being here, she has struggled. Tantrums like I’ve never seen before, yelling at nurses, throwing things across the room, refusing to play, refusing to FaceTime with her family, refusing food, refusing to get out of bed, only wanting her iPad, screaming repeatedly, “Let me go HOME!”, hitting me, kicking me, refusing to respond to people when addressed. It’s been a nightmare. A soul-crushing nightmare. When, I suggest things to play that she’s always loved, “We did that at my old hospital. We can’t do that here.” When I suggest a new thing, “We don’t do that at hospitals.” 

A nurse made a good point yesterday when I was especially struggling. When Isla was first admitted to her old hospital, she was so young. Everything was fun and new to her so there really was no “adjustment period”. Now, she’s almost a year older. She gets it. She sees the change. She knows this isn’t all that fun anymore. She gets it. She’s not going to be fooled. She has to warm up to it on her own and make this a new special place in her own time. She may never have all the warm feelings about this hospital as she did with the other, but she’ll eventually adapt. 

I have suddenly found myself advocating for her mental health as much as her physical. I’ve become intentional about explaining our situation with our nurses each shift and they’ve been wonderful about not quickly throwing her into the castaway box labeled “rotten” like the former nurse I’ve mentioned. Yesterday, her nurse was exceptional. She really took the time to listen and help us. She was incredibly intentional about developing a relationship with Isla and was proactive about providing resources for us. Isla continually shut her down but she really didn’t let that bother her. She got it, and it was obvious that it motivated her to give Isla even more love. Additionally, the nurse practitioner who was assigned to us the last couple of days was incredible about sitting with me, listening, and encouraging me. She asked questions about our family, my interests, our experience through cancer. She treated me like a person- not a number- and it felt good. She and the nurse snuck a panda wagon in our room while Isla was napping. Isla woke up to this giant panda in her room and immediately shouted, “Oh my goooooooodneeeeeeess!!!!!” They came in to play with her in it and it was the first time I truly saw Isla smiling and laughing since we’ve been here. Soon after, an art therapist came in. Isla clearly did not dig her (neither did I, really) and Isla was done with that within a few minutes. Back to laying in her bed, she went. So that was a flop. But that panda sure was great. 

On the upside, Isla has been much better today. Not great, but better. Still sad, but not angry and lashing out like she was. Progress. She woke up wanting hugs (the other days, she didn’t want to be touched) and wanted to eat some breakfast. When breakfast was over, she wanted to play. Yes! Finally! We played Batman (good) vs. Manbat (evil)- I pushed around her pole, managed the cords and tubes, and monitored the machines precariously balancing on the edge of the pole while she lunged at me with her bubble wand. I gave an evil laugh and she growled. We did that for a solid 20. The most play she’s done in days. I’ll take it. Soon after, she got the pre-meds, fell sleepy and then lethargic. Later, a music therapist came in. She was wonderful. She had a keyboard, a guitar, ukulele, xylophone, drums, and more. She made up songs about Isla and even taught her a scale. Isla adored her and responded so well to this. More of this please. This is how our day has been. A gentle series of ups and downs, but that’s always better than explosions of anger. Maybe, just maybe, tomorrow will have more ups than downs. 

In a Nutshell These few days have been exhausting. I’ve surprised myself with my level of patience with her. It’s just so apparent why she’s acting the way she is. This makes it easier to find the grace needed to give her the space needed for processing. Even when that space is an outburst then screaming then tears then silence then hugs. 

I honestly haven’t really been able to feel all that down about things myself because I’ve been so consumed with helping Isla get over this hump. It’s exhausting but life-giving to know that this is important work.

I’m reading When Things Fall Apart by Pema Chodron. One thing I read that perfectly sums up my experience of this week is this:

”Things falling apart is a kind of testing and also a kind of healing. We think that the point is to pass the test or to overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy... We use these situations to either wake ourselves up or to put ourselves to sleep. Right now- in the very instant of groundlessness- is the seed of taking care of those who need our care and of discovering our goodness.

Things could not be more groundless. But, focusing myself on caring for Isla’s sweet, broken spirit is the work I must set my heart and mind to this week. It has become my prayer and meditation. 

Journal entry by Autumn Gentry

This week, Isla’s cancer increased from 11% to 24%. 

This afternoon, Isla and I leave for Chicago where, tomorrow morning, she will begin the phase 1 Flotetuzumab trial at Lurie Children’s Hospital of Chicago. Things are hard right now. Things are just not looking good for her. Discouraged really only scratches the surface of how we feel. When you are in a dark pit, how do you describe the walls, the floors? It’s just dark. Right now, I have no words for this endless feeling pit. It’s just there. And we are moving through it, feeling our way along, occasionally finding water pooling in a crack, we drink in the hope, and continue to move through again. What else do we do but move through? We move through and desperately drink in the hope that this trial could do something to help her out of this deep, dark pit of cancer. One foot in front of the other, we are moving.

Today, I gave Isla a necklace. I was going to give it to her the day of her transplant- a way to celebrate her strength. But today, moving into this great unknown, it seemed right to give it to her. I had matching necklaces made for us. I adore the Victorian language of flowers and, from that, chose the cosmos flower to be imprinted on our necklaces. Not only is cosmos the flower for her birth month, October, but it represents peace, wholeness and joy in life. Cosmos is a hearty flower than can thrive in a variety of soils and conditions much like Isla. It is my hope that her body will find wholeness, our family can find peace, and the years ahead will be filled with joy and peace. I gave it to her because I think we could all use a little more hope today. 

Journal entry by Autumn Gentry

As I said last night, Isla hit 17kg... with her shoes on. The doctor gave us a, “Let’s just leave those on”, which we will forever be grateful for. Today, she is having a bone marrow aspirate and biopsy which will officially qualify her for the trial. They need this to prove that she has at least 5% residual disease. They will also do a lumbar puncture to inject Cytarabine (chemo) into her spinal fluid and have a PICC line placed. She will now have a tube in her nose, tubes in her chest and tubes in her right arm. I cannot wait for the day when she can swim again, take a regular bath, and run in a sprinkler. We’re so tired of these tubes and so is she. 

Yesterday, I also went through the details, risks, etc. of the trial with our new doctor who is leading the trial at Lurie. Michael participated virtually. Honestly, the conversation did the opposite of putting us at ease. This is a phase 1 trial meaning they are not testing the efficacy, they are testing the safety. It has only been tested on elderly AML patients. A similar drug has been used on children with ALL, but ALL is a very different disease than AML. The trial is being run throughout the country, but Isla is only the fourth child in the country to participate. She is the first in Chicago. This is NEW and unknown.

The primary goal of the study is to test what the appropriate dosing of the drug is. Based on lab studies, they have three levels that they would like to test. They will test the middle range level on Isla. In subsequent studies, they will either increase or decrease the dosing based on how the participants (including Isla) handled that level. The greatest risk other than it simply not working is a negative immune system response. This drug will be bringing Isla’s t-cells (killer cells) to the cancer; however, her immune system could go into overdrive attacking other cells in her body. Because of this, they will start the dosing very low and slowly increase over the course of the first week. On day 7, they will hit their goal level and continue that level over the remaining 21 days. If she has a poor immune system response, this should likely happen in the first week. But again, this is all unknown. We are incredibly uncomfortable with this, but we really have no real choice in the matter. The CAR t-cell trial in Philadelphia has suddenly been held up in the FDA so it remains unopened. There are no more chemo options available for her. It’s either this or comfort care. Obviously, we choose this. 

Isla can do up to six 28 day rounds of the Flotetuzumab. Yesterday, we realized a difference in what the Milwaukee team and Chicago doctor have communicated to us about the timing of this trial. Our team at Children’s Wisconsin has said that as soon as she is below 5% residual disease, we will move to transplant. However, our Chicago doctor said that she would prefer us to do at least two rounds of this pending her outcome. On day 29, Isla will have another bone marrow aspirate/biopsy to check her level of disease. If there is no significant change, the doctor doesn’t think we should continue the trial. If Isla is below .2% disease, she thinks we should go to transplant. But, if Isla has had a significant decrease in disease but is still above .2%, she strongly recommends we jump straight into another 28 day round the very same day. She believes that subsequent rounds could potentially bring Isla’s disease lower therefore offering better outcomes following transplant. The reason for the quick turn around between rounds is that if she goes more than 72 hours between doses, she would have to start at a super low dose all over again as well as be more vulnerable to those early treatment risks. If they jump straight into the next round, they could just maintain her dosing level thereby reducing the risks of these reactions.

We will have to discuss this with our transplant team. Honestly, the thought of 56 days in the hospital- really up to 6 months in the hospital- with no time between rounds is incredibly overwhelming to me. That is time away from Michael, time away from my children, time quarantined with Isla in a hospital room with no friends or family to see. And again, the immunotherapy is just a means to get to transplant. Transplant is the cure, not the immunotherapy. We’ll need to take this in stride and consult with our primary team for more direction. 

Later this afternoon, we will head home to Milwaukee. We’ll then head back to Chicago to be admitted to the hospital either Tuesday night or Wednesday morning. Isla will begin receiving medicine Wednesday afternoon. 

Beyond the overwhelm of this new and somewhat scary information, it’s been surprisingly emotional to adjust to a new hospital. At Children’s Wisconsin, everyone (even security) knew Isla by name. She was adored by her nurses and Isla loved it there. For the most part, she hasn’t been around friends in nine months. Now, the nurses and therapists are her friends. When Isla found out she was going to a new hospital on Wednesday night, she wept. She said she was scared of meeting new doctors and nurses and she wanted her friends (nurses) with her. Since being here, she’s just been off. Grumpy, sad, and testy. This is a much bigger hospital where things feel a lot more strict and formal. With all of the COVID-19 precautions, things have felt rather impersonal and cold. I’m confident the people here aren’t actually that way, but all of the restrictions, masks, empty halls, and being restricted to our room just doesn’t offer the warm feeling that we are used to. It’s hard to newly get to know staff when half their face is covered. Our hospital staff also wore masks and followed good safety measures, but at least we were able to get to know them before the era of COVID. 

I’m having a hard time not imagining a lot of loneliness at this hospital and am, myself, feeling much like Isla. Grumpy, sad, and just over it with all of this. Last night, after a long day of travel, tests and missing her nap, Isla was having a hard time listening and her nurse called her “rotten”. When she left the room, I cried. I knew she said it jokingly and meant absolutely nothing by it. I was upset because that’s not who Isla is and Isla’s nurses know her and know that that is the last word you’d use to describe her. And it suddenly made me miss them terribly- especially those I could chat with. It really was our nurses and therapists who made the last 9 months at Children’s Wisconsin bearable. I’m looking at you Anabel, Jess, Bailey, Kiera, Becca, Emilie, Kelsey, Holly, and so many others.  Our nurses pour their hearts into their work and every little “how are you?” mattered so much to us. When they started calling me by my name instead of “mom”, it mattered. When Isla was first diagnosed and I was 8 months pregnant and unable to eat because of all the stress, they brought me water and pushed me to eat so I could also care for my unborn baby. It mattered. When they held my colicky, crying newborn so I could run downstairs to grab my only meal of the day, it mattered. When one gave me her extra formula coupons from home, it mattered. When one of them saw me after our time home and said, “Hi, friend”, it mattered. When they referred to Isla’s IV pole as “BoBo” and her teddy bear as “Beary Bear”, it mattered. When they knew to bring her black glitter, it mattered. When, they asked about Sawyer or if Ellis is still sick with that runny nose, it mattered. When they decorated Isla’s door when she came back from the ICU, it mattered. When one of them talked to me like just another mom friend and not her patient’s family, it mattered. When Isla would come up to the nurses’ station and try to play hide and seek with them, they’d pause their work to run around with her and it mattered. When I’d break down crying, it wasn’t Michael or my family or my friends who were there in the hospital in that moment. It was the nurses who filled in and sat with me. It really mattered. When they chatted with me about Tiger King rather than Isla’s vitals, it mattered. When they shaved Isla’s head for me, it mattered. And now after so much, we have to start over. On top of everything else right now, it seems so silly to be sad about this, but it really was the small comfort of familiarity that began to make our time there okay. We’ll rebuild here and we’ll be okay. I’m just tired. 

And if you are a healthcare worker, please know that every single one of those little interactions is noted and it really, really does matter.


Journal entry by Autumn Gentry

Tomorrow afternoon, Isla and I will travel to Chicago for:
  • Labs/general exam
  • Echocardiogram
  • EKG
  • Official consent to participate in the trial (we are pushing for Michael to be able to consent remotely via Zoom)
We will then be admitted overnight. The following morning, she will have:
  • Bone marrow aspirate- to prove her level of residual disease for the trial
  • PICC line placement- She already has a central line (the tubes placed in her chest), but she will need a PICC line in addition to this during the trial. The Flotetuzumab will be given to her through her central line, but they will need to check the level of medicine in her system daily. They cannot check the level in the same place where she is receiving it. So, she will have tubes in both her chest and her arm. 
The hospital will require her to have a COVID-19 test before her procedure. In order to have this expedited so we can have that Friday procedure slot, the oncologist has to make the procedure look like an emergency. So she will basically be admitted to make the procedure look like an emergency on paper. 

After her procedure, we will go back to Milwaukee for the weekend. We will then travel back to Chicago and be admitted at Lurie early next week (Monday or Tuesday) and will hopefully begin the trial on Wednesday. She must be 17 kg in order to officially begin receiving medicine. Yesterday, she weighed in at 16.5 kg meaning she put on .7 kg in 4 days. We are confident she will hit our goal by next week. 

Things are moving forward. 

Journal entry by Autumn Gentry

Today Isla got a spinal tap to test her spinal fluid to check for any leukemia cells. We should know the results of that test tomorrow. She also got her central line put in so they wouldn’t need to continually prick her to test her blood levels. Unfortunately that’s necessary when cancer’s in your blood, like leukemia is. They also did an initial dose of chemo in her spinal fluid as a preventative measure. 

We’re waiting to find out whether she has high-risk or low-risk AML. That will determine if her cancer can be fought by chemo alone. If she's high-risk, she may need more invasive treatments and a bone marrow transplant.

Tomorrow, she will begin her first round of chemotherapy. It will be 10 days of treatment followed by 20-25ish days in the hospital. We will have a 1 week to be home before we jump into the next month of chemo. The full treatment process is usually 6 months. 
Isla’s Story

Site created on July 25, 2019

Welcome to Isla’s CaringBridge site! We are using it to keep family and friends updated in one place and to coordinate the the seemingly endless generosity we’ve been offered. We appreciate your support and words of hope and encouragement.

Isla was diagnosed with acute myeloid leukemia (AML) on July 24, 2019.  She then relapsed in November 2019 and is currently preparing for a bone marrow transplant. She’s a fierce fighter with a huge heart and a sly smile. Thanks for walking on our journey with us as we (with Isla at the lead) kick cancer to the curb.

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