Journal

Journal entry by Michael Gentry

I had a quite a long conversation with the attending oncologist today. One of the great things about Children’s Hospital of Wisconsin is their commitment to educating families. Every oncologist, whether they are Isla’s primary oncologist or not, takes the time to educate us and answer every little question in detail. The most encouraging thing he said today was, “Isla truly could not be doing any better. I know that won’t remove the pit in your stomach that is there every night when you go to bed, but everything is working in her favor and you have every reason to be hopeful”. Words to hold onto. He said that at this stage of treatment, most children either have mouth sores and are on a feeding tube or don’t have energy from the extremely aggressive course of treatment AML’s undergo. Isla could not be more opposite. She eats more at the hospital than she ever did at home and she can be near impossible to keep up with when she’s tearing around the halls on the ride-on giraffe- me chasing behind her with a baby in the crook of one arm and pushing her IV pole with the other. A great deal of her success so far can both be attributed to the fact that she was born an incredibly resilient fighter and the use of prophylactic (preventative) antibiotics- the new standard of care that her oncologists have adopted.

The three things that doctors are concerned with when it comes to AML: 1) The chemo not working resulting in the cancer getting out of control 2) Long term side effects from the toxicity of the chemo (secondary cancers, vital organ damage, etc.) 3) Infections. Infections are the most common cause of death in AML patients. To prevent infections they give high risk leukemia patients prophylactic antibiotics. This covers high risk ALL patients and all AML patients (AML is considered a high risk leukemia). She is given micafungin to prevent fungal infections and Levaquin to prevent streptococcal which is the infection most often responsible for the death of a patient. These prophylactics are newly found to aid in the success of AML patients. Though there is a concern for antibiotic resistance in these patients, the benefits seem to outway the risks. However, this is why it is only given to patients diagnosed with high risk leukemias- not low or standard risk ALL which has a 98% success rate. Research is working on targeted cell therapies but this will not become a standard of care for quite some time. Until then, we are grateful for this newer treatment that is keeping Isla’s weakened immune system safe and remain hopeful for a good outcome. 

Well, that’s my bit of education for the day. :) 

Autumn
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Journal entry by Michael Gentry

Nothing big to report today. Isla’s mild reactions from the chemo have cleared up and now we’re in the middle of that boring stage where we wait for her counts to recover. She’s currently at a 0 and we need her to hit somewhere around 200 in order to go home for a bit. We’re hoping she’ll stay infection-free during neutropenia and be home in time for Thanksgiving- day 31 of this cycle. 

Yesterday, we hit day 15 of this cycle which is the halfway mark of Isla’s treatment. Halfway there! This is definitely a marathon. An incredibly trying marathon. On our hardest days, we keep telling ourselves that this is the hardest thing we’ll ever have to do. We are halfway there. We made it through the last four months of this and we can get to the end. For most kids, treatment is about 6 months, but for us, since Isla takes longer to recover, it will be more like 8 months of treatment. That’s a really hard road to stare down for us; but as we are being stretched incredibly thin, we can only think about each day and then the next. Anything else is far too overwhelming. We continue to be encouraged by the love and support of our community. The logistics of our day to day would be near impossible without you. 

Autumn

Journal entry by Michael Gentry

The last couple of days have unfortunately been a bit more eventful than we would have liked. On Tuesday, we noticed Isla’s shirt getting wet over her central line. Her central line is an iv line that was surgically inserted through her chest and into a vein so they can easily draw blood and administer chemo, fluids, blood & platelets, and other medicines. After some testing that resulted in it filling with blood, they determined that there was a crack in the tubing. This can unfortunately be common in active kids as the tubing simply gets more wear from their movement and play. Even though it’s common, it’s scary. When there is a crack in her line, she is suddenly put at a very high risk for infection which is made even scarier right now as she slips into her time of neutropenia (suppressed immune system). And as we’ve mentioned, infections are the “big scary” for kids in her position. The process to remove the damaged tubing and insert a replacement required general anesthesia yesterday. The procedure went well and Isla swung back quickly. She’s getting pretty used to the whole procedure process- this was her fourth time going under in the last few months. All is well with the new tubing but active little Isla may have to start wearing a special vest to protect her tubing from damage. 

Isla is done receiving the chemo meds for this month so they took her off of the steroid meds and steroid eye drops. However, in the last couple of days, she has started developing the rash again; and this morning, she woke up crying due to eye pain and light sensitivity. The doctors are putting her on the steroid eye drops again and are keeping an eye on the rash to see if it develops further. She is also developing a cold so we’re holding our breath that they won’t put her on protective isolation- something that wouldn’t be very fun for anyone involved. 

Autumn

Journal entry by Michael Gentry

We were mistaken- this round is actually 5 days of chemo, not 8- so Isla is getting her final dose of chemo for this round today. After that, we wait for her blood counts to drop and then rise over the next few weeks. This week Isla did react to the high dose cytarabine but not as badly as the first round. She had a fever for a couple of days, has had a mild rash that comes and goes depending on when she was last given steroids, mild nausea, and some eye irritation but not badly enough for the doctors to increase her dose of steroids. She had a couple of low energy days when she had the fever, but other than that has maintained a great attitude and pretty good energy. 

We’ve kept her busy this week with her grandmas visiting, trick or treating in the unit, a visit from Belle, and a good rotation of hospital volunteers to liven things up. We’re hoping for a quick, uneventful recovery so she can make it home in time for Thanksgiving this month. 

Autumn

Journal entry by Michael Gentry

A few days after celebrating her third birthday, Isla’s ANC shot up to 1230 which allowed her to be admitted to the hospital on Tuesday. At admission, she had all the usual admission procedures- chemo injected into her spinal fluid (to prevent the leukemia from spreading to the brain and spinal cord), heart echo, and EKG. All went smoothly and they started this round of chemo that day. 

She is now on her second day of her third round of chemo. Again, Isla will be undergoing five rounds total of chemo. Almost halfway there! The first two rounds of chemotherapy were called “induction”. The final three rounds are called “intensification”. Induction therapy uses chemotherapy to destroy as many of the cancer cells in the blood and bone marrow as possible to make the AML go into remission. Intensification is used to destroy any cancer cells that may be hiding after going into remission by using more intensive treatment. She will be undergoing 8 days of intense chemo this cycle. She will then need the rest of the month for her body to recover and begin making healthy blood cells again. During this time, she is at a very high risk for infections. Because of this, it is important for her to remain hospitalized until her immune system can protect her again. 

This round will use a different combination of drugs than the other two identical months. The drug we are most concerned about is cytarabine. In the first month, she was extremely sensitive to the low dose that she received- severe rash, inflammation and pain in her eyes, and fevers. They prevented this reaction last month with steroids from the beginning. This time, however, the primary drug she will be receiving is an extremely high dose of cytarabine. They are already treating her with steroids to prevent a reaction so we are hoping that is the only measure we will have to take for this. 

So for now, we are crossing our fingers for a non-reaction to the high dose cytarabine and getting settled in for our long month here in the hospital.

Journal entry by Michael Gentry

Thank you all so much for participating in Miles for Isla! We had a great turnout in Milwaukee and loved seeing so many good friends in the beautiful fall weather. We have so many people to thank!

Thank you:
  • Ellen and Tori McKamey for suggesting the idea and Wale Akingbade for designing our t-shirt
  • Graham Brown and United State of Indiana for printing our T-shirts and donating the profit
  • Krista Broaddrick, Kim McCarthy, Rebecca “RAM” Arnell, Chris Steiner, Rob Driscoll, Liz and Ian Whitlock, Jeanne Allen, Chritty and Lizzie Schuele, Ashley and Andy Lange for helping with food, tables, child wrangling, and T-shirt distribution  
  • Dave Wimmer for helping with all the last minute scramble this morning 
  • Brandon Evans for organizing the Marquette ride 
  • Cranky Al’s for making special Isla donuts :) 
  • Everyone who showed up to support us, everyone who fundraised, and everyone who biked/walked/ran remotely
We feel so loved and supported by our community both near and far and feel energized by this outpouring of support. We had a great time today and couldn’t walk this journey without you. 

Autumn and Michael 

Journal entry by Michael Gentry

Hi everyone, 

We’re getting excited for Sunday! We’ve planned out a 5k route. Here’s a description (see photo for gmaps visual).

  • Enter County Grounds Park via 87th Street, heading north past Watertown Plank Rd. 
  • Take your first left when you get past the parking lots.
  • Park at Sanctuary Woods Parking Lot
  • Find us and say hello; grab a snack and a beverage and get your t-shirt!
  • We’ll get going by around 8:30 or so when we’re confident most everyone has arrived.
  • We’ll try to mark the course, but this photo shows our suggested 5k course
  • The very last quarter mile is packed gravel. I have run and biked on it often; it’s not very loose. But if you are concerned about using that portion of the trail, we would suggest doubling back once you get to the village.
Depending on how much time we have before Sunday, we may also plan out a 10K route. Don’t forget to let me know if you really want to bike (no takers so far, so I’ll likely run unless things change).

Thanks everyone for your love and support! Looking forward to seeing you on Sunday.

Michael

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Journal entry by Michael Gentry

Last week, Isla’s ANC was not yet high enough to be readmitted for her next round of chemo. They had rescheduled for today, 10/22. However, Isla’s blood counts yesterday showed that her ANC was only at 500. She needs to hit at least 1000 to safely start her next round of chemo. Because of this, we will be home for yet another week hoping that her immune system will kick up within the week. We are now scheduled to be admitted next Tuesday, 10/29. 

This is what happened last month so we can now determine that this is the pattern that Isla’s body will likely follow for her remaining rounds of treatment. That pattern is about a 30 day stay in the hospital and around 2.5-3 weeks at home. Though Isla’s body is slow to recover from the rounds of chemo, the doctors are not concerned at this point. Because AML is an extremely fast-moving, aggressive form of leukemia, the treatment is equally fast-moving and aggressive. They hit her white blood cells hard and fast- really wiping her system each month. It’s definitely reasonable for her body to slowly recover from that. The good news is that her system IS recovering each month. Also, her heart, liver, and kidneys- which are always being monitored- are still looking strong. This is what we need to focus on. 

The delays in treatment are a scheduling nightmare for me and it’s becoming a bit of an emotional roller coaster. We mentally prepare leading up to the start of treatment, but then are delayed. Mentally prepare again, delay. It can be taxing. We are also just very ready to be done with all of this so each delay feels like another week in the trenches of this ordeal. But, on the bright side, Isla will now get to spend her third birthday at home on Friday, go trick or treating with her brother, and attend the Miles for Isla Ride/Walk. 

This next round will span the majority of November; but, with her pattern of a longer home stay, we will likely be home for the majority of December. We are thrilled to be able to share some of the Christmas season with Isla outside of the confines of the hospital! We are still crossing our fingers for Christmas morning at home. 

Finally, we’re gearing up for the Milwaukee Miles for Isla event this coming Sunday! Based on sign-ups, we’re expecting 30 - 50 folks to come out Sunday. Here’re a few details to help with planning that day:

  1. Time and Location: We will be meeting (weather permitting) on Sunday, October 27th at 8:00 am at County Grounds Park in Tosa, just north of Children’s Hospital.
  2. Weather: Michael will plan to ride or run with anyone who shows regardless of the weather. :) Bragging rights aside, we’ll understand if it’s 40 degrees and raining if you choose to do your miles on a dry day during the weekend.
  3. Refreshments: We are looking for people who are willing to volunteer to bring something to share — coffee, cider, bagels, bananas, donuts, etc. Please let me know if you can help with this!
  4. Biking: Please let us know if you’re planning to bike on Sunday. Of course, Michael would love to bike with you, but we know it’s not going to be feasible for everyone. If we only have a few committed bikers, he and the kids will plan to run/walk instead. Still need to plan out a cycling route.
  5.  T-Shirts: If you asked for a t-shirt and are in the MKE area, we hope you’ll pick up Your shirt in person on Sunday from us.

Autumn

Journal entry by Michael Gentry

Five days ago, I woke up to my crying newborn who needed to be fed. While nursing him in bed, I casually scrolled my phone catching up on the news headlines of the day. My heart dropped when I came across this article in the New York Times with the following headline: “Faced with a Drug Shortfall, Doctors Scramble to Treat Children with Cancer”. I immediately yelled for Michael to grab Isla’s binder with all of her paperwork. He scanned her treatment plan noting all the chemo medicines she has taken and has yet to take. I was holding my breath, my heart pounding preparing for further devastating news to wash over us. But then, the answer was “no”. No the drug, vincristine, is not in Isla’s treatment plan for her AML. I almost cried with relief. We dodged another bullet there. And then came this terrible sick feeling. Vincristine is one of the primary drugs used to treat ALL, the more common form of leukemia. 

The gist of the news is this: Pfizer has become the sole supplier of this extremely important drug. There is no substitution for this drug. There is a shortage and they won’t be able to have a bump in their supply until at least the end of the year- though it is expected to truly take longer than that. Doctors will now be faced with the impossible decision of whose doses to skip, whose doses to reduce. They must ration out the drug for children facing this critical disease. No one knows how children will handle a reduction in their chemo medicine. The decision of which children are worthy of receiving their medicine is an impossible one that should not be a thing for any doctor here in the US. 

Since hearing of this news I have been rattled. ALL patients have a 90% survival rate. ALL is more common so much more research and development has gone into raising the success rate. Isla has been given a 70% chance of survival with her diagnosis. So many times I have found myself fighting off anger toward this. It’s already not fair that hilarious, witty, bright Isla has been diagnosed with cancer. It’s even more unfair that she has to have the one with a far worse survival rate. For the first time yet, I was relieved that she has AML. We don’t have to face this drug shortage. I hate that I feel that relief and I hate that there are thousands of other moms out there fighting a similar battle who are devastated and terrified this week. Their child has already been diagnosed with a critical disease and now the doctors will have to fight this with one hand tied behind their backs. None of this is fair. The fact that only one company in the United States is making a drug that thousands of children’s lives depend on. That there is a shortage and no one is stepping in to stop this. The fact that all of these doctors, parents, and children will be holding their breath waiting for the fallout. The fact that moms like me have to have this sick, twisted relief that our kid dodged this.  

I hate that I will have to continue holding my breath now with an even clearer understanding that my child’s life depends on these toxic chemicals being produced. I hate that only 4% of the billions of dollars that are annually spent on cancer research and treatments are directed towards treating childhood cancer. I hate that “since 1980, fewer than 10 drugs have been developed for use in children with cancer, as compared with the hundreds of drugs that have been created exclusively for adults.” I hate that only 4% of the federal funding directed toward cancer research actually goes to the study of pediatric cancer. I hate that “more than 95% of childhood cancer survivors will have a significant health-related issue by the time they are 45 years of age.” These health-related issues are most commonly the result of treatment. The very treatment that has barely developed since the 80’s. This is unacceptable. 

This news and the terrible reality that we are at the mercy of a drug company for our child’s survival has got me fuming this week. More has got to be done. Current research is focused on developing cancer therapy that kills only cancer cells, not healthy ones. Therapy that uses a patient’s own immune system to fight diseases, not toxic chemicals with lifelong effects. But the funding just isn’t there to do right by these kids with more progressive treatments. When feeling helpless in this system, the one thing I know to do is support research. So I’m asking you, Isla’s support network, when given the chance, please support pediatric cancer research. When the MACC Fund (or your regional equivalent) holds an event, go to it. When there is a race (like the Trek 100), participate and raise support. Allocate part of your end of the year charitable donation to research- MACC FundSt. Jude’s Research Hospital, and Versiti Blood Research Institute are great places to start. Do it for the families holding their breath, trying to make it to the next dose.


Journal entry by Michael Gentry

We have been loving our time home as a family of five. It’s been an adjustment for sure, but it’s been a good week. Michael’s cousin from Houston has been staying with us for the last week and a half to help out and will be here for another week. This has made the adjustment 1000x times easier and has offered Michael and I the opportunity to have some nights out together which is such a rarity these days. We are finding ourselves so much more refreshed and ready to tackle this next round of chemo. 

Today, Isla’s blood test showed that her ANC dropped down to 162 which is lower than when she left the hospital. She needs to be up to 1000 in order to start her next round of chemo. The same thing happened last month. This is not a particularly bad thing, just the pattern of recovery that Isla’s body seems to follow. She will now be readmitted to the hospital next Tuesday (10/22) which gives us a whole extra week at home. Downside: this sort of drags out this whole ordeal even more. Upside: Isla will probably be home for Thanksgiving! Fingers are still crossed for Christmas but that one isn’t looking too promising now. Wishing and hoping for some Christmas magic there. 

On another note, many people have asked how they can best support us moving forward. Currently, the most practical thing we continually ask for is meals. This is something that we will always need assistance with throughout the course of Isla’s treatment. The only time anyone is at home on weekdays is for sleeping so we really have no way of cooking for ourselves. Days for November have been added to the “Task Planner” located on the “Ways to Help” page. Any day with a dot on it is a day when we need help. Thank you so much to everyone who has helped us so far! We truly don’t know how we’d be managing all of this without you. 

Autumn

Journal entry by Michael 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’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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