Alexander’s Fight to Beat Cancer
THE CAILOU KID UPDATE: NOV 12, 2021 at 11PM
This is loooong overdue. I apologize for not putting something out sooner. Many of you have reached out and I’ve been downright awful at responding. Sorry! You are good friends. Please don’t stop! I’m crawling out my shell! Slowly.
Part of the delay, I realize, is that I have been waiting until there was news to share. I’ll get to the point before I ramble on for a bit (which I invariably will): the news is mostly good. Alexander is halfway through this longer-than-forever regimen of chemotherapy. Radiation is complete. The big news is that we mark this milestone with not one but two sets of clear scans. This means that not only did the surgery on his lungs rid him of all detectable cancer, it means the chemo is successfully preventing any cancer too small to detect from regaining any kind of a foothold.
It is only half-time though. We have another 5 months of chemotherapy. With this particular type of cancer, we need all of those 5 months to wipe out all the lingering cancer cells we cannot see. (Without tempting fate), Alexander has been tolerating his chemotherapy exceedingly well since the last update. We’ve spent more time out of the hospital than in it. He hasn’t lost much weight. He gets a few opportunities to do normal kid things. He wakes up with a smile on his face.
All of this is good news. It is a lot to be grateful for. And I am grateful for much more than I can possibly enumerate here. Looking back on my last full update (July 28), we’ve come a long way. Alexander had just escaped the PICU which, in hindsight, was a 12-day nightmare. I didn’t realize it at the time. I was a robot in survival mode. Only now that it has calmed down do I get to unpack that experience and take stock. It’s going to be a while before I fully come to terms with it.
Now, paradoxically, it is only because he is doing so well that I can afford to be at all consumed by the myriad insults he has to endure each day e.g. excessive bruising, weight loss, waking up at 4am to throw up because dad misread the nausea, low appetite, pants that keep falling off, multiple blood transfusions, medications galore, being shackled to an IV pump for hours, for days. To put it bluntly, these all suck. And no kid should have to endure any of them. But it could be so much worse.
And as much as this tries to drag me down, I am buoyed by Alexander’s demeanor above all else. He’s unphased. Not because he’s a fighter or a warrior. He’s neither. He is too young to understand what those are. He’s just a little boy who wants to be a little boy. And he’s pretty damn determined. You can pump him full of chemicals, subject him to surgeries; he will still want to play. He will still want to giggle. He will still want to jump and stomp. He will still want to make funny sounds and be the goofy kid he is. Even when he doesn’t feel very good. That snaps me out of any funk I may be in. If a four year old with cancer can look past it to be in the moment and make the most of each day, so can I.
Next update will be a week or so after Thanksgiving. If we’re closing in on Christmas and you haven’t yet seen an update, hunt me down!
UPDATE #10: July 28, 2021 at 11PM
From the frying pan into the fire. After 12 days in the PICU, Alexander has been sent upstairs to the fourth floor to resume the chemotherapy where he left off. The minuscule cancers – the ones they cannot detect, the only ones that remain – are not taking any time off. Nor can we.
That said, the doctors have given Alexander a few days to rebuild his strength and complete the withdrawal from the numerous heavy-duty opiates and other drugs he’s had in the past two weeks. This kid has done more drugs before the age of 4 than I have in my whole life (so far).
It was a traumatic experience seeing Alexander motionless for so many days. His only movement being the artificial inflation and deflation of his lungs by a machine on the other end of a plastic hose. Tubes went from inside his chest down into two plastic boxes taped to the floor and full of bubbling water making his room sound like a pet fish store. And then there were the moments he would start to wake despite the sedation and the interventions needed to keep his lungs from collapsing.
Thankfully, that is now behind us. The underlying cause of the air leak syndrome that caused his ventilation and prolonged stay in the PICU is still not clear. I am simply grateful beyond words that I have my boy back and he is no longer in any immediate danger. The PICU staff at CHLA are amazing and dedicated people. We are grateful.
Tomorrow, Alexander has a new CT scan so radiology can revise his radiation plan and get started next week. Once that is done, we start the third cycle of chemotherapy which lasts five days. We go home Sunday or Monday and continue therapy as an outpatient having been inpatient just shy of three weeks. The boy is tough! The fight continues.
UPDATE #9: July 15, 2021 @ 6PM
Two steps forward, one step back. Yesterday morning’s surgery was successful but there were complications with Alexander’s post-operative recovery. The two cancerous nodules in Alexander’s lungs were both cleanly removed yesterday leaving him with no detectable cancer at the moment. The complication came about as result of air from his lungs escaping into his body and getting trapped under his skin. He was literally inflating.
A follow up surgical procedure was required yesterday evening to examine his airway and lungs and to redo the chest tubes that were not doing their job in preventing air leaking into his body. Alexander was also put on a ventilator as a precaution. The trapped air and the chest tubes can be very painful and as result, Alexander will remain sedated and in the PICU for the next few days until it is mostly reabsorbed.
The surgical complication is a temporary setback. Yesterday afternoon was scary and it is painful to look at his bloated motionless body. But, it is 100% recoverable and temporary. And there are no more detectable tumors in his body and that is the more important development. Once he is recovered enough, we resume chemotherapy and radiation to mop up the lingering cancer cells from his body. The fight continues…
NB: Instead of a current photo of Alexander in the PICU (which is not a pleasant sight) I am giving you one from a month ago that I haven’t shared yet and is just cuteness overload.
UPDATE #8: July 13, 2021 @ 8PM
It’s been a minute since I’ve provided a detailed update. Alexander has completed two cycles of chemotherapy. Each one caused neutropenia (very low white blood cell count) and a low fever which required a four day hospital stay.
Yesterday, Alexander had his seven-week scan to get an updated look at his lung nodules. All but two have disappeared and there are no new ones to be found. Good news.
The two that remain however, did not shrink much if at all. As result, our oncologist Dr. Mascarenhas wants them removed. And that is what will happen early tomorrow morning. One nodule will be removed from his left lung and if that goes well, they will also remove the one in his right lung.
In between the numerous hospital visits and even during bouts of nausea, Alexander has maintained his determination to play. We’ve been swimming, hiking, going for walks, and playing in the sandbox. His spirit is strong and he continues to tolerate the chemotherapy as best he can. Keep him in your thoughts tomorrow morning. I will share the result of his surgery as soon as we know.
UPDATE #7: June 6, 2021 @ 9AM
Alexander’s first round of chemotherapy was a triple whammy of cancer-fighting drugs: vincristine, cyclophosphamide and doxorubicin. It was followed by a week of nausea. Fortunately, the anti-nausea medication mostly worked, Alexander kept up an appetite and he ate reasonably well.
This past week, Alexander’s second dose of chemotherapy was a lighter one and outside of the expected weakening of his immune system, we hope there won’t be much else in terms of side effects for the next nine days. It has not all been smooth sailing, however. Alexander has developed an aversion to the hospital (who can blame him). This week, he pulled at his port access just before receiving his second dose of chemotherapy. There was a lot of tears as the nurse replaced it. We’re working on strategies to get Alexander more comfortable with the pokes and to make him feel like he has more control. Suggestions welcome.
In between hospital visits, we’ve been keeping Alexander active. Daily walks, rides on the big wheel, a new sandbox in the backyard, playing with visiting family, a trip to the botanical gardens at the Huntington library and so on.
I’ve been telling Alexander about all the people near and far who have been sending their continued love and support. Some close friends and family. Some we haven’t seen in a long time. I want Alexander to feel the affection just like his parents do. I want him to know just how many people are on his team, how many people he has touched, how many people are there for him.
The next big test comes in about ten days when Alexander starts a 4-day administration of etoposide, carboplatin and cyclophosphamide. Two weeks after that, it’s thirteen doses of radiation over two and a half weeks.
We are looking for a nanny who has experience with kids in Alexander’s situation, who can also help around the house and generally make this situation more sustainable over the next 9 months. We also want to set up play dates for Alexander as we get more in tune with his general health during chemotherapy. He loves being around other kids and we need to keep that going for him.
May 26, 2021 @ 11PM
One down, twenty-eight to go. Radiology must be wondering where their Radio Flyer went.
UPDATE #6: May 23, 2021 @ 11PM
First and foremost, we are grateful and humbled by the outpouring of support, donations and wishes for Alexander (and us). It buoys our spirits and helps Alexander tremendously. Thank you.
Alexander had a great weekend being a normal kid. A lot of playtime at the park on Saturday and a lot of playtime at the beach today. He loved it. The kid has fortitude. He is determined to play. If I had the surgery he did, I would be a whiny pain in the ass for weeks.
Wednesday, we begin the second phase of his treatment. Alexander is enrolled in clinical trial AREN 1921 led by the Children’s Oncology Group. It is the only realistic option for the cancer he has. It comprises an aggressive 10 month regimen of chemotherapy. I loathe the idea of putting toxic materials in his little body but there simply is no other option. This cancer is aggressive. So much so, the nearly grapefruit-sized tumor they removed was likely non-existent only three months ago.
We hope Alexander responds to chemotherapy with the same determination, resilience, and strength he has with his surgery. We are also preparing ourselves for the likelihood that there will be many rough patches. We are going to do everything within our capability to maximize Alexander’s strength over the cancer. Right down to daddy shaving his head at the same time Alexander has his head shaved. Solidarity, baby!
I will have an update after his first round of chemo. The fight continues.
P.S. A lot of people have been asking how they can help. We’re working with some of our friends to help figure out what we will need in the coming months. We have the GoFundMe (https://www.gofundme.com/f/v4wbk-help-alexander-beat-cancer) which gives us maximum flexibility. But, if you prefer to offer something more personal, we should have some suggestions soon for what might be most helpful. And if you simply want to offer moral support and encouragement, it really really helps!
May 18, 2021 @ 5PM
On a more positive note, first full day at home. Lots of playtime. Kinetic sand. Happy kiddo.
UPDATE #5: May 18, 2021 @ 7:30AM
Alexander is home. His energy is good. Last night, he played and giggled like he would normally. If you didn’t know it, you would not guess he had a major surgery 6 days ago. He took his surgery like a champ.
Yesterday, we got some insight into the pathology of Alexander’s cancer. A little background…
Wilms’ tumors occur in about 500 children per year in the US. It is rare. 450 of them are considered “favorable histology” and respond well to chemotherapy. Even at stage IV, the four year survival rate is between 85 and 90%.
The remaining 50 have some degree of “anaplastic” cells. These cells are much more resistant to chemotherapy. Yet many of these anaplastic containing tumors have only a small percentage of anaplastic cells (focal type) and are still very treatable.
And then there is Diffuse Anaplastic Wilms’ Tumor (DAWT) where the tumor is predominantly anaplastic and more resilient to chemotherapy. This is a rare subset of a rare subtype of a rare cancer. Four year survival rates at stage IV with aggressive chemotherapy are somewhere between 30% and 60% depending on the treatment protocol.
I was convinced Alexander’s cancer would be in the 90%, the favorable histology and as terrible and as unfair as it is, it would be treatable. It would be survivable. As much as the chemo would be awful, and as unfortunate as this is, the odds would still be on his side.
Yesterday, we found out his prognosis is a fair bit darker. This is a big setback. But it is only a setback. It is not over. It means we have an even steeper and more perilous path ahead of us. That battle starts next week.
May 16, 2021 @ 12PM
For the love of muffins, Alexander has his first solid food since the surgery.
UPDATE #4: May 15, 2021 @ 3PM
The days and nights have completely blurred together. Admitted 6 days ago. 3 days since the surgery. 2 days without the epidural. 2 days free from everything but the IV. 1 day in normal clothes. 1 day since being able to get out of bed and walk around.
Alexander has impressed his doctors with his progress. We’re waiting for his digestive tract to finish rebooting. Then he can have solid food and hopefully go home soon after!
In the meantime, we’re doing laps of Four West and Four East in a toy car, taking long naps each day to heal, blowing bubbles, listening to guitar, reading books and getting way too much time on the iPad. Maybe a therapy dog later!
The first chapter in the book How Alexander Beat Cancer is almost complete. Chapter 2 begins next week. Chemotherapy. The pathology report is imminent and it will tell us what we’re up against.
UPDATE #3: May 13, 2021 @ 5PM
Alexander IS tough! Only hours after his surgery, he was awake and eager to move around. That would have been no problem if he wasn’t:
- high on morphine and an epidural
- bound by an array of tubes and wires going in and out of him
- having a huge incision in his abdomen that needs to heal.
After a few hours awake, Alexander slept soundly for the rest of the night despite his epidural machine complaining loudly every few minutes about the line being (intermittently) blocked. The nurse came in and fiddled with it over and over and over to no avail.
Alexander did not like the tube up his nose that drained his stomach and he tried to yank it out 3 times. Fortunately, it is now removed.
With the primary tumor out and Alexander healing from his surgery, the next steps are to establish an oncology plan. This will likely include both radiation and chemotherapy. While the primary tumor has been removed, we already know cancer nodules exist in his lungs and possibly elsewhere. The exact plan we follow will be determined by Dr. Moke, Alexander’s oncologist, once the pathology of the tumor is determined.
I forgot to mention yesterday that during his surgery, they implanted a main line port in his chest which will be used in place of an IV for his chemotherapy over the next 6+ months. There is a long road ahead but we took a big step in the right direction in the past 24 hours.
P.S. We had sushi last night while Alexander slept. It was a little reprieve for mom and dad. Thanks to one of you for the Uber eats gift card.
UPDATE #2 : May 12, 2021 @ 5PM
Alexander is out of surgery. 4.25 hours. Dr. Grikscheit, Alexander’s surgeon, came out to tell us it went well. The complete tumor along with the kidney it took over were removed without spillage. No intrusion by the tumor into the major blood vessels. No major blood loss. No surgical complications.
From the right kidney, the tumor expanded to under his liver and against his duodenum (part of the small intestine) and out into his abdomen. The good news is there wasn’t any obvious indication it had grown into any of those organs.
Alexander is now in recovery and Courtney will be able to be with him (only one parent is allowed as result of COVID precautions). If all goes to plan, he can come back to his room in an hour or so. He will be sedated. He will have an epidural to numb his body below his chest. He will have a catheter. He will have a tube in his nose that drains his stomach because his digestive tract will effectively stop functioning for a few days as result of his intestinal tract moving around.
UPDATE #1 : May 12, 2021 @ 3PM
Alexander’s surgery has been postponed until 12:30pm tomorrow. It will last roughly 3 hours. He’s tired of being poked and prodded but is thoroughly enjoying the Radio Flyer rides around the fourth floor. He swiped a fingerful of ultrasound gel into his mouth this morning during an hour-long ultrasound. He did not enjoy the taste.
We delayed the surgery by a day to make sure we were in the best hands and part of that was transferring to Children’s Hospital. Alexander is now in the care of Dr. Tracy Grikscheit (surgeon) and Dr. Diana Moke (oncology). Both have extensive experience with pediatric cancers like this. The team here is beyond impressive.
So many people have reached out. It is truly heartwarming. Alexander is loved and that is helping to lift us all. My phone has been buzzing quite a bit but I’ve had to ignore it most all day as we have been through a dizzying number of steps with doctors, tests, scans, etc. to get Alexander ready for tomorrow. Karlyn Nelson, a cancer survivor and close friend of Courtney’s, has kindly organized a GoFundMe page for Alexander.
I hope to have more news following his surgery tomorrow afternoon.
I have exceedingly difficult news to share. There is no good way to share it. No one wants to hear this. Alexander has cancer. There is a large mass — believed to be a Wilms’ tumor — that has taken over his right kidney and grown beyond it. There are nodules in his lungs that suggest the cancer has metastasized beyond his abdomen. He isn’t even 4 years old.
I cannot put to words just how devastating this is. There is no way even in the unfairest of unfair worlds that such a young and innocent life should be ravaged like this. It has been breaking my heart repeatedly since this nightmare began to unfold only two days ago.
Alexander is not in pain. He did summersaults in his bed today. But he faces exceptional challenges in the next days, weeks and months as we begin the process of ridding his body of this evil. He will undergo a lengthy surgical operation today to remove the tumor from his abdomen. The outcome of this first step will drive much of what happens next.
Alexander, his mother and I are at Children’s Hospital in Los Angeles. I will provide updates regularly. Keep Alexander in your thoughts. He will need all of our strength and support.