About two months ago, I shared that my daughter has leukemia. It was an emotional and difficult blog post to write and even more difficult to record. Nobody wants to get the news that a loved one has cancer. Especially a parent hearing that about their 3-year-old (now 4).

Now that we’re around 70 days in, the shock has worn off, routine has been established, and we’ve somewhat adjusted to hospital life as the norm. I can’t honestly say I’m happy with how it’s turned out, but it’s a hundred times better than it was in May. I’ve stayed pretty quiet on the personal front, focusing my energy on being present with my wife and kids - but I’ve started getting LinkedIn notifications that people are checking my profile (I assume looking for this update) and a second round of “thinking about you” messages have begun rolling in. So I figure it’s time to break my silence and let you all know how things are going.

Support

I can’t begin to talk about the journey without first pausing to say THANK YOU from my entire family. My initial post got well over 100,000 views, hundreds of comments and reactions, and dozens of shares. Because of your engagement and generosity, we were able to raise over $38,000 to help support Olivia and my other daughter Isabella in this trying time. This staggering number has made my wife and me cry numerous times due to the overwhelming support of the community. Words can’t even begin to express the gratitude we feel toward all of you and your selflessness.

The donations, personal stories, check-ins, flowers, presents, and prayers have been a tremendous help to the overall mental and emotional well-being of the entire family. From the bottom of our hearts - thank you.

Treatment

When I published my first post about Olivia, I had no idea what treatment was going to be. I’m sure the doctors told me a plan, but I was in too much distress to retain anything. I had no idea what was coming or even what the options were.

A few weeks in, I was under the impression we were going to be in the hospital for 6-7 months doing round after round of chemotherapy. A round of chemotherapy looks like this for us:

• 7-9 days of chemo drugs administered roughly every 12 hours
• Wait for two weeks as the drugs kill all the fast-growing cells in the body
  • This includes cancer cells, bone marrow, hair follicles, and GI tract lining
  • This is when you see the common side effects we think about with chemo - hair falling out, nausea, tiredness, etc…
• Wait for one week as bone marrow rebuilds and begins replenishing the body with red and white blood cells and platelets
• Go under anesthesia for a bone marrow biopsy and lumbar puncture to check current cancer levels
• Get discharged from the hospital for 5-7 days for a mental break
• Do it again

It’s a lot of sitting a waiting, honestly. Cancer treatment isn’t particularly exciting - in a good way. It’s relatively simple and the worst thing we have to do is manage side effects.

In mid-June after our first round of treatment, we met with the oncologist in charge of our case for the new treatment plan.

The plan

Chemo is a hell of a drug. After a single round of it, oncologists expect to see you in remission - meaning no cancer cells in the sample they take. Now, samples aren’t definitive, they’re just subsets of a whole. If you take a sample of bone marrow and see no cancer cells, it’s not a sure thing you’re cancer-free. It means the sample they took had no cancer in it. Leukemia is systemic, meaning it’s all over the body. It’s blood cancer. So even if you get a negative result from a biopsy, you could still have cancer. Since cancer is a rapid-dividing disease, so if you leave any cells, chances are high you’d relapse.

After our first round of chemo, Olivia’s bone marrow biopsy came back with 2-3% leukemia cells. This is a marked improvement over what it was, but it wasn’t 0. That means the leukemia is a bit more robust than they originally thought. We also had genetic testing done on the cancer cells. Those results came back showing a highly-resistant to chemo mutation that almost always results in relapse. Plus, the doctor said her subtype of leukemia (AML subtype M7) has a high rate of relapse. 3 strikes.

All these things put together mean we have to do things the hard way - with a bone marrow transplant. Sound intense? It is.

The current plan is to do three rounds of chemotherapy (we’re about to finish round two), then go straight into the transplant. So, what exactly is a bone marrow transplant?

Bone marrow transplants

I’ll preface this section by saying - I am not a doctor and have had no medical education. Everything I’m going to tell you is what I’ve learned in the hospital speaking to educators and the transplant team.

A bone marrow transplant is basically endgame treatment for leukemia. The science behind it is incredibly cool and leaves me in awe about the world we live in. The process starts with about 8 days of super intense chemotherapy. If the chemo Olivia has been doing up to this point was a 4, this would be a 10. The goal of chemotherapy in the first three rounds was to wipe out her bone marrow and have it rebuild itself so it can start fresh and stop producing cancer cells. The goal with chemotherapy in a bone marrow transplant is to kill the bone marrow so it never comes back.

After the chemo drugs, we have a day of rest followed by transplant day. A donor will go under anesthesia in the morning to have marrow extracted from their hip bone. After that, doctors will remove the red blood cells from the sample, along with various other components to concentrate the stem cells contained in the marrow. These stem cells are hematopoietic, meaning they can differentiate (turn into) all the different types of blood cells, but not anything else like muscle or hair cells.

Once processed down to concentrated stem cells, Olivia will get them infused like she would any other IV. It hangs like a drip bag and goes in through her central line, which is a line she had surgically placed that sends fluids directly to a large central vein close to her heart. Her bones, depleted of marrow, emit signals that attract these stem cells and create adhesion molecules, which “catch them” and store them where they are needed.

Absolutely. Crazy.

Now, I mentioned something about a donor. Much like a liver or kidney transplant, you need to match on a key characteristic. Otherwise, your body will see the donation as foreign and attack and kill it (aka graft vs host disease). With bone marrow, this characteristic is the HLA (Human Leukocyte Antigen) type. HLA type really is just proteins found on the surface of the cells in your body. Your body knows what proteins to look for, and if a cell doesn’t have them, it knows to attack. Matches are rated on a scale of 1-10, with 1 being bad and 10 being a perfect match. In a bittersweet twist of fate, my 6-year-old, Isabella, is a 10/10 perfect match.

Obviously, this is great news from the standpoint that we have a donor we know and trust and we don’t have to wait for months and months to find one somewhere across the country. But on the flip side, as a parent, having to get my other child medically involved, go under anesthesia, and work with her on emotions and confusion, is a stressful and emotional burden to bear. Short term, this makes me feel physically sick to my stomach, but long term, makes my heart swell with happiness knowing the unbreakable bond these two are forming as a result of her literally saving her sister’s life.

Another cool little science fact - when this procedure is done, Olivia’s blood type will change. Since bone marrow creates your blood cells, Olivia will be creating an exact match of Isabella’s blood down to a DNA level. So if she ends up turning to a life of crime and leaves some blood behind, she has an automatic scapegoat 🤣

Post-transplant

Doctors consider transplant day to be “day 0.” The chemo drugs administered before the transplant are days -8 to -1. Days 1 through 20 are gonna suck. The side effects of chemo drugs don’t usually start until a few days after the drugs are stopped because they take time to kill the fast-growing cells and some of them affect cells at different stages of their lifecycle. So we won’t see side effects until after the transplant.

Because the chemo is administered in lethal doses, the side effects are super intense. Olivia will be constantly nauseous, develop severe mouth sores and ulcers through her entire GI tract, lose the rest of her wispy hair, develop skin rashes, and completely lose her appetite. The doctors know how to manage these side effects, and she’ll be given plenty of meds to help make that time as easy as possible. It won’t be easy, but they’ll do their best. Remember, Olivia is a proper cowgirl, it takes a lot to take her down. But if anything will, it will be this.

After that 20-day mark, we expect to see things begin to improve. Her bone marrow should begin multiplying and creating blood cells again, side effects should start calming down, and energy levels should begin climbing. Pending any nasty infections, she should be discharged from the hospital around day 30.

That said, we’re far from being done. In theory, at this point the leukemia should be completely gone and Olivia will be cancer-free. But we’re just getting started. The intensity of the chemo drugs and this entire procedure can’t really be overstated. A bone marrow transplant is resetting Olivia’s blood and entire immune system back to nothing as if she were a newborn. The four years of immunity she’s built up so far will be gone. She could get sick if someone with a cold enters the same room as her. She has no defense mechanisms. Plus, we have to stay vigilant on the whole graft vs host disease thing. Leaving the hospital doesn’t mean her body suddenly accepts the transplanted bone marrow as hers.

Leaving the hospital

After she’s discharged from the hospital around 30 days after the transplant, Olivia is still at high risk for infection and rejection of the transplant. Because of this, she has to stay within 30 miles of the hospital until day 100.

Here’s the crappy part: my house is 60 miles (96 km) away from the hospital. So even though Olivia won’t be admitted to the hospital anymore, she still can’t come home for another 70 days. At this point, my other daughter will be back in school. So my little family of four will unfortunately be split in half for this entire process. I will be at home taking Isabella to and from school every day. My wife will be staying with Olivia in a Ronald McDonald House. Since the hospital is so far away, we won’t have time to drive there for daily visits and see Olivia and my wife before bedtime. So our visits will only be on the weekends, and even then, as long as Isabella hasn’t gotten sick from school. This is going to be our routine until the end of 2024.

So all holidays are up in the air on whether or not the four of us can be together. It’s going to be rough.

By day 100, Olivia will have undergone another surgery to remove her central line and have a port placed instead. The port is an under-the-skin device used to draw blood and administer fluids. When not in use, the skin heals over it, providing a water-tight seal around this device that goes straight to her heart. This significantly reduces the risk of infection compared to her central line because the central line is open to the air at all times (it has caps to seal it, but the caps can be removed). Having the port instead of the central line means she can take a shower or a bath again. In case you’re wondering, yes, that means she has not had a shower since mid-May. Instead of bathing, we wipe her down every day with CHG wipes. Also at this 100-day mark, we’ll get the thumbs up from the doctor that Olivia can finally go home. Once she’s home, we can resume being a complete family unit again - but now with a bubble kid.

By bubble kid, I am mostly joking, but there is some truth to it. Olivia has a lot of work to rebuild her immune system. She’ll have to get all of her vaccines again. She can’t play outside and run around in the dirt. She can’t visit places with lots of people. All of these things are high-risk areas of infection for her. So she can be at home, where I’ve had hospital-grade air scrubbers installed throughout the house and gradually build it back up. She’ll be going back to the hospital once every week for a while, then once every other week, then once a month after about a year post-transplant.

At that 1-year mark, she should be safe to ease into things again. She can go to school. She can play with our animals. She can harvest from our garden. She can resume being a normal kid.

Being a cancer patient, especially one who went through an incredibly intense procedure with high-risk leukemia, she will be doing annual visits to the oncology department for the rest of her life.

How we’re doing

It might sound like a joke, but I think Olivia is handling this entire situation the best out of everyone. About a month into treatment she had a realization and asked us “Wait, am I sick?” As cute as that is, she was serious, and goes to show how resilient kids are. Especially Olivia. My friends who have known her since she was an infant hear me describe her boisterousness in the hospital and simply respond with “typical Olivia.” There are a few things that give her anxiety in this journey and whenever we have to face those things - those days suck. But every other day she’s sprinting around the hospital pulling pranks on the nurses she’s come to love.

My other daughter is doing well, but not quite as strong as Olivia. She gets sad every day we come home from the hospital for bed saying “I miss mom and sister” - something that is so hard to hear as a parent. We’re working through it though. I expect when school starts again, she’ll be getting some good distractions and friendly interactions to cheer up a bit.

When people ask my wife or me how we’re doing, our usual response is “Don’t ask questions you don’t want the answer to.” The answer is long and complicated, and oftentimes not particularly full of positivity. The burden of having your child develop cancer is enough to take anyone down. But also trying to balance making your other kid feel special and have a fun summer along with managing a constant flow of visitors and staff in the hospital (when you’re normally very private), and keeping a farm happy and healthy all while being separated from your other half for months… I just really don’t have the words.

About a week into our first hospital stay, I was taking Isabella home and she wanted to stop on a bench in front of the hospital and watch the sunset. We sat there in silence for a few minutes before she asked “Dad, does the world ever stop?”

That question brought tears to my eyes. My whole world had just been turned upside down and the truth was setting in that despite my youngest being hospitalized with leukemia, I still had bills to pay, animals to take care of, a day job (although Momento has been incredible during this whole process and has taken this burden off of my plate), and a hundred other things to do. I couldn’t just put it all aside and dedicate 100% of my focus to treatment.

I sighed and simply answered “No baby. The world will always keep moving no matter what happens.”

Work continues to get done without me. The AWS Hero summit last week carried on while I sat in the hospital. My animals are growing. Bills are getting paid. The world didn’t stop because my child was sick. And that’s a good thing. It would be selfish of me to expect it to change because of my situation. But that doesn’t make it any less difficult.

Final thoughts

My life has fundamentally changed. I’m slowly starting to accept that things will never be the exact same as they were before. We have cancer in our lives now. Hopefully by the end of 2024, I can say cancer is in our lives, but it’s in remission.

Knowing the full treatment plan is a tremendous help for my wife and me mentally and emotionally. Granted, we’re really just swapping anxiety with stress, but the fear of the unknown is a killer - and we don’t have that anymore. It’s a long road, but at least we can see the end of it.

I want to say thank you again. Thank you for your stories. Thank you for checking in. Thank you for your generous donations. And honestly, thank you for listening. Community has given me a sense of belonging and hope that wouldn’t be possible alone. The bursts of positivity and optimism are pulling us up from the dark and helping us stay strong. I can’t emphasize it enough - you all have had a tremendous impact on my family during this journey. I’ll be thanking you for years to come. I appreciate each and every one of you.

I’ll be returning to work once Isabella goes back to school, so you’ll start to see a lot more of me around mid-August. And for those of you going to AWS re:Invent in December - I’ll see you there 😉

Happy coding.