Alexis Takes Down Leukemia
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The Abridged Version
Our baby girl Alexis, 10, was diagnosed with T-cell Acute Lymphoblastic Leukemia on November 21, 2019. (Cancer is bad.) She started treatment at Dell Children’s Hospital in Austin the next day. She’s responding well and her prognosis is great. Cancer remains awful and, even with good insurance, incredibly expensive. We’re heartbroken, ready to fight, and need your help.
The Unabridged Version
In late October, shortly after finishing reading the Harry Potter Series for the first time, Alexis got a cold with a slight fever. By the next morning, the cold was joined with morning nausea and vomiting. We took her to the doctor for meds and the doctor just assumed it was a cold. Because, you know, mid-October. Her cold got better, but the morning nausea persisted.
Our Hufflepuff has always had a sensitive stomach, so no one thought much of it. But a week later, as it persisted, we returned to the hospital to get it checked. The doctor thought it was allergies causing drainage into her stomach during sleep. She’d feel better by early afternoon, so this idea made sense. Allergy pills and home we went.
After another week of not improving, we took her to the hospital on November 21st where she was diagnosed with leukemia. T-cell Acute Lymphoblastic Leukemia, to be more accurate. While it’s nearly impossible to feel positive about, the type of leukemia is good news. The treatment is a known-quantity, stable, and has a great track record. 98% of children go into remission and 90% are cured. We’re lucky in this deeply unlucky situation.
On November 22nd, she had surgery to put her chemotherapy port in and had her first treatment. The next few days were awful. (Cancer is bad.)
PICU Parties Aren't Great
Alexis ended up spending the next few days in the Pediatric Intensive Care Unit with fluid in one of her lungs and an infection from her chemo port. There was a day where it looked like she may have needed kidney dialysis. Which sounds like a bad thing because it is a bad thing. (Cancer is bad.) But it’s also a good thing — she responded so well to her first few treatments that her kidneys were having trouble keeping up with filtering out all the destroyed cancer. (Even destroyed cancer is bad.)
While we’re on the topic of good things: Alexis’ favorite nurse is also a Hufflepuff. And therapy dogs continue to rule.
We don’t deserve dogs. Well, Alexis does.
That’s it. Those are the only good things. Everything else about cancer really sucks.
After a few days in PICU, she was on the mend enough to return to her regular floor and room. That’s where we are now, a few weeks later. Living in the hospital. (Cancer is bad.)
Stabilizing and Treatment
Alexis is getting chemo twice a week, on Mondays and Fridays. One of those treatments involves a lumbar puncture to deliver the chemo directly into her spinal cord. (Cancer is bad.) Treatment days are really rough — the doctors are still figuring out the best meds to manage the side effects. There’s been a lot of progress of getting the med cocktail right, but it still has a ways to go.
Even with treatment, Alexis has been incredible. She's as sharp and spicy as ever. She loves the days that therapy dogs come to visit, playing the new Pokemon game when she can, and talking about Harry Potter with the nurses. She’s even helping the doctors do their job. She listens to everything being said in her room, and when she overheard them talking about how her potassium levels were low, she piped up and matter-of-factly informed them: “Well, then you need to get me a banana.”
What’s Next
We’re fortunate to have Dell’s Children Hospital in Austin and blessed to have the medical team we do. Her oncologist is world class and we love the staff. That said, we're eager to get home.
Unfortunately, we have no idea when we can take her home. It changes day to day and we have no firm information. It could be today. It could be mid next week. It could be in the new year. It depends on how she continues to respond to treatment and how well we can manage the side effects.
Once she’s released from the hospital, it’s a whole new ballgame. (Which isn’t fair to ballgames — those are fun.) Alexis will continue to receive chemo treatments for another two to three years. (Cancer is the literal worst.) Apparently the cancer may be gone within the first few months, but they continue treatment because a recurrence is terrible, no good, very bad news.
When do things return to normal? We have no idea. In a perfect world where she goes home today and we nail the meds to help her feel as close to 100% as possible, we’re still months away from her being able to return to school and a semblance of regular life. And this is not a perfect world. (As evidenced by Alexis having leukemia.)
What's This Going to Cost
The good news: We have good insurance.
The bad news: Even with good insurance, this is going to cost tens of thousands of dollars out of pocket every year. (For reference, the last time our family dealt with cancer, it ended up costing over $60,000 out of pocket.)
The bills start now, which means we’ll hit our out-of-pocket maximum before the end of December. Just in time to hit a new out-of-pocket maximum to start January 1. We still aren’t sure what insurance is going to end up covering, where we’ll qualify for financial relief from the hospital, and what we’ll need to cover out of pocket.
All we know is it’s going to be a lot. And that’s not accounting for the cost of everything relating to care. On top of care, we have things like family travel expenses, household expenses related to care, additional expenses from needing help with our other children, and who knows what else? We could start thinking it through and listing it all out, but pretty sure that will just make us (and probably you) anxious.
We know you understand how special Alexis is — even in the midst of starting this awful chapter in her life, she’s still lighting up every room she’s in. We're so grateful for any contribution you can make and encourage you to share Alexis' story with whomever you know. Together, we're going to get through this.
Your love, faith, and generosity are going to help Alexis get through this. Thank you.
We love you,
A whole pile of Hufflepuffs, Ravenclaws, Gryffindors, and even a couple Slytherins
P.S. — We're starting a newsletter for you to be able to keep up with her treatment. It's called Alexis Asks.
Our baby girl Alexis, 10, was diagnosed with T-cell Acute Lymphoblastic Leukemia on November 21, 2019. (Cancer is bad.) She started treatment at Dell Children’s Hospital in Austin the next day. She’s responding well and her prognosis is great. Cancer remains awful and, even with good insurance, incredibly expensive. We’re heartbroken, ready to fight, and need your help.
The Unabridged Version
In late October, shortly after finishing reading the Harry Potter Series for the first time, Alexis got a cold with a slight fever. By the next morning, the cold was joined with morning nausea and vomiting. We took her to the doctor for meds and the doctor just assumed it was a cold. Because, you know, mid-October. Her cold got better, but the morning nausea persisted.
Our Hufflepuff has always had a sensitive stomach, so no one thought much of it. But a week later, as it persisted, we returned to the hospital to get it checked. The doctor thought it was allergies causing drainage into her stomach during sleep. She’d feel better by early afternoon, so this idea made sense. Allergy pills and home we went.
After another week of not improving, we took her to the hospital on November 21st where she was diagnosed with leukemia. T-cell Acute Lymphoblastic Leukemia, to be more accurate. While it’s nearly impossible to feel positive about, the type of leukemia is good news. The treatment is a known-quantity, stable, and has a great track record. 98% of children go into remission and 90% are cured. We’re lucky in this deeply unlucky situation.
On November 22nd, she had surgery to put her chemotherapy port in and had her first treatment. The next few days were awful. (Cancer is bad.)
PICU Parties Aren't Great
Alexis ended up spending the next few days in the Pediatric Intensive Care Unit with fluid in one of her lungs and an infection from her chemo port. There was a day where it looked like she may have needed kidney dialysis. Which sounds like a bad thing because it is a bad thing. (Cancer is bad.) But it’s also a good thing — she responded so well to her first few treatments that her kidneys were having trouble keeping up with filtering out all the destroyed cancer. (Even destroyed cancer is bad.)
While we’re on the topic of good things: Alexis’ favorite nurse is also a Hufflepuff. And therapy dogs continue to rule.
We don’t deserve dogs. Well, Alexis does.
That’s it. Those are the only good things. Everything else about cancer really sucks.
After a few days in PICU, she was on the mend enough to return to her regular floor and room. That’s where we are now, a few weeks later. Living in the hospital. (Cancer is bad.)
Stabilizing and Treatment
Alexis is getting chemo twice a week, on Mondays and Fridays. One of those treatments involves a lumbar puncture to deliver the chemo directly into her spinal cord. (Cancer is bad.) Treatment days are really rough — the doctors are still figuring out the best meds to manage the side effects. There’s been a lot of progress of getting the med cocktail right, but it still has a ways to go.
Even with treatment, Alexis has been incredible. She's as sharp and spicy as ever. She loves the days that therapy dogs come to visit, playing the new Pokemon game when she can, and talking about Harry Potter with the nurses. She’s even helping the doctors do their job. She listens to everything being said in her room, and when she overheard them talking about how her potassium levels were low, she piped up and matter-of-factly informed them: “Well, then you need to get me a banana.”
What’s Next
We’re fortunate to have Dell’s Children Hospital in Austin and blessed to have the medical team we do. Her oncologist is world class and we love the staff. That said, we're eager to get home.
Unfortunately, we have no idea when we can take her home. It changes day to day and we have no firm information. It could be today. It could be mid next week. It could be in the new year. It depends on how she continues to respond to treatment and how well we can manage the side effects.
Once she’s released from the hospital, it’s a whole new ballgame. (Which isn’t fair to ballgames — those are fun.) Alexis will continue to receive chemo treatments for another two to three years. (Cancer is the literal worst.) Apparently the cancer may be gone within the first few months, but they continue treatment because a recurrence is terrible, no good, very bad news.
When do things return to normal? We have no idea. In a perfect world where she goes home today and we nail the meds to help her feel as close to 100% as possible, we’re still months away from her being able to return to school and a semblance of regular life. And this is not a perfect world. (As evidenced by Alexis having leukemia.)
What's This Going to Cost
The good news: We have good insurance.
The bad news: Even with good insurance, this is going to cost tens of thousands of dollars out of pocket every year. (For reference, the last time our family dealt with cancer, it ended up costing over $60,000 out of pocket.)
The bills start now, which means we’ll hit our out-of-pocket maximum before the end of December. Just in time to hit a new out-of-pocket maximum to start January 1. We still aren’t sure what insurance is going to end up covering, where we’ll qualify for financial relief from the hospital, and what we’ll need to cover out of pocket.
All we know is it’s going to be a lot. And that’s not accounting for the cost of everything relating to care. On top of care, we have things like family travel expenses, household expenses related to care, additional expenses from needing help with our other children, and who knows what else? We could start thinking it through and listing it all out, but pretty sure that will just make us (and probably you) anxious.
We know you understand how special Alexis is — even in the midst of starting this awful chapter in her life, she’s still lighting up every room she’s in. We're so grateful for any contribution you can make and encourage you to share Alexis' story with whomever you know. Together, we're going to get through this.
Your love, faith, and generosity are going to help Alexis get through this. Thank you.
We love you,
A whole pile of Hufflepuffs, Ravenclaws, Gryffindors, and even a couple Slytherins
P.S. — We're starting a newsletter for you to be able to keep up with her treatment. It's called Alexis Asks.
Organizer
Adam McManus
Organizer
Austin, TX