Day 588 – October 27, 2023

The short version:

On October 5th, 2023, we learned that Harvey’s cancer returned. The truth is, it likely never went away. His chemotherapy and treatment plan for the past 18 months simply didn’t work, and the cancer spread to his spinal fluid. We’re devastated and heartbroken, furious at the universe, and feeling lost. Only days ago, we found out what the next step will be for Harvey’s treatment plan: CAR T therapy at Children’s Hospital of Philadelphia (CHOP) in Philadelphia, PA. His treatment will begin on November 8, 2023, with the actual CAR T infusion scheduled to begin mid-December. While this brings new opportunities, it also presents new serious risks. Above all, we are grateful for today and hopeful for tomorrow as we navigate the unknown to the best of our abilities and intuition. We have an unwavering ambition for permanent remission, and Harvey also possesses the strength, courage, bravery, determination, and, without question, the sense of humor to conquer. Harvey’s journey continues on.

The more complete story:

First, apologies for such a long time since an update. Our last site update was on March 18, 2023 – exactly one year since the initial diagnosis. What have we been up to in that time? Living life! Not having to post critical updates on the site was truly a luxury that we certainly didn’t take for granted. Harvey had been doing well and even returned to school in-person as a kindergartner. On October 5, he was just entering the 4th maintenance cycle of his treatment plan, and things were moving along nicely. As you just read above, that has all changed.

On an idle Thursday evening (October 5th, 2023), the Goldade kids were eating an early supper so that we, Dad & Mom, could get ready for a remote parent-teacher conference at 5:30 pm. If you followed Harvey’s Journey previously, you may recall that we received Harvey’s initial cancer diagnosis during parent-teacher conferences on March 18, 2022. And since PTSD loves déjà vu, at 5:02 pm, we received an unexpected call. After “hello?” came the voice of Dr. Miller, Harvey’s lead oncology doctor. He shared concerning results from that morning’s typical spinal tap chemotherapy injection & spinal fluid test. They had found cancer in his cerebrospinal fluid (CSF). His spinal fluid. The color once again disappeared from our world. As we attempted to listen to the full details over the next 20 minutes, outbursts of disbelief and denial, accompanied by uncontrollable tears, originated from our side of the call. How could this happen? Why would this happen? A controlled breakdown was underway as we both were still at home, surrounded by listening ears of Harvey, Hattie, and Henry. We tried to muster some composure.

The following weeks brought multiple spinal taps for Harvey with potent chemotherapy (referred to as “Triple IT” – methotrexate, cytoside arabinoside and hydrocortisone) to begin killing the cancerous cells in his spinal fluid. During each intrathecal injection procedure, they also collected spinal fluid to test, keeping a close watch on the newfound cancerous cells to ensure they were being eradicated. Harvey would also need another bone marrow biopsy to determine if the cancer had also returned to his bone marrow. We were horrified to learn that he additionally needed an MRI of his brain to understand “the extent of impact to the brain and nervous system.” These words, verbatim from Dr. Miller, shook us to the core. They chased away our sleep at night.

On Monday, October 9th, we watched our brave boy walk confidently into the procedure room with an MRI machine. Immediately, all confidence left him. His body recoiled, his smile gone. Sitting on the side of the MRI table, Harvey hunched over to lean into our arms, hiding his face in our clothing, terrified of what was happening. As we helped lay our sleeping Harv down on the table, we gave him a kiss on his forehead and walked out of the room – abandoning him while he lay motionless for an MRI, a bone marrow biopsy, and intrathecal chemotherapy. For the next 2 hours, we waited for our whole world to reappear from behind locked procedure room doors.

As test results trickled in over the following days, we learned that the chemotherapy was working effectively to reduce, then eradicate, the cancer cells in his spinal fluid to undetectable levels. They could now declare him back in remission, which, as we now appreciate, doesn’t really mean his cancer is completely gone. But it’s a good start. His MRI showed absolutely no apparent damage or concerns from the cancer cells in his spinal fluid. Hallelujah! And lastly, results from his bone marrow biopsy showed no signs of detectable cancer. Finally, we were getting some good news instead of bad.

Now that we know Harvey’s cancer was never fully eradicated, we need to try something else to get him cancer-free. The past 18 months of chemotherapy and treatment didn’t work. All the pain, side effects, potentially permanent neuropathy, sleepless nights of nausea, port access pokes, chemotherapy administered via pills and IV, intrathecal injections, trips to the clinic/hospital, Rylaze intramuscular shots… All for what?? Our emotions clearly took over here. Soon, these feelings of helplessness, anger, and sadness would be intentionally pushed aside to focus on what comes next. We would have to share this news with the kids. We would have to somehow explain to Harvey what happened and what it means. But what could we tell them? We, ourselves, didn’t even know what comes next!

Over the past week, we’ve worked with numerous medical teams to develop a clear path forward for Harvey. His cancer treatment will shift to CAR T therapy at Children’s Hospital of Philadelphia (CHOP) in Philadelphia, PA. What is CAR T? Concisely: It’s a procedure that collects T cells from a cancer patient’s blood, reprograms them to fight their specific type of cancer, then injects them back into their body. We like to explain it by saying it “teaches the body how to kill it’s own cancer.” Of course, that’s a gross oversimplification. CAR T is a complex, amazing, emerging type of individualized immunotherapy with promising results for cancer treatment. It’s worth mentioning that CAR T has shown very promising results in a good number of patients with Harvey’s type of cancer – We are incredibly hopeful. We hope CAR T alone is enough to end this struggle of a journey for Harvey. He is currently scheduled to begin CAR T therapy on November 8, 2023 (collect his T cells) and then inject them back into his body in mid to late December 2023 after they’ve been “trained” to fight his cancer. We’ve already booked our plane tickets to Philadelphia November 5-9.

Not being able to tell our kids anything meaningful for weeks was an absolutely horrible feeling. They deserve to know, but at the same time, we want them to be kids and not live in worry over the unknown. As soon as we had enough information to form a more concise plan, we were ready to share it with them. Finally, at 2:30 pm on October 26, we sat down and shared this with Harvey:

This conversation is another core memory I will carry with me until I am no more. In that moment, we held back every emotion except confidence and love as we discussed these facts with him. We were looking into the eyes of our warrior, owing him an explanation for all the sudden changes, and laying out how his future days and weeks would present new changes and challenges.

The past week has been full of other challenges for us with hospital admissions for both our daughter, Hattie, and Harvey. Hattie needed fluids and meds for dealing with a few GI issues, while Harvey has been spiking fevers as high as 103.7F this morning. Harvey also had some scary liver lab results showing that an oral chemotherapy, mercaptopurine (also called “6MP”), may not have been metabolizing as it should and was becoming toxic to his liver. Thankfully, his liver labs continue trending the right way, and he’s currently back at home and fever-free. We hope to keep him that way until we head to Philadelphia!

Hattie was in the hospital for 5 days.

Harvey was in the hospital for 4 days.

In closing, we want to share what is currently on our minds as we prepare to begin CAR T therapy. There is a chance that CAR T therapy could be the answer we’ve been seeking. If successful, he may not ever need chemotherapy again. There’s at least a chance of permanent remission. (I’m stopping short of saying a word that begins with ‘c’ and rhymes with pure.) There is also a risk of serious side effects even if CAR T is successful, such as something called cytokine release syndrome and/or serious infections/illnesses. I’ll go into more details in a future update. But know this: Each new opportunity seems to present a roll of the dice between benefits vs. risks, and this is no exception. If CAR T doesn’t work for Harvey, he will then need a bone marrow transplant along with intense radiation to his head and spine. We are trying to avoid this at all costs since it introduces a plethora of new risks to young, developing bodies. If Harvey does eventually need a transplant, we found out that his sister, Hattie, is a 12 out of 12 perfect match for him. Realistically, we don’t have the strength to understand the implications of a bone marrow transplant right now. So we’ll leave those details for a time when they’re needed, which is hopefully not at all.

To our family, friends, and complete strangers who have impacted us, followed along with Harvey’s journey, or helped us in so many thoughtful, heartfelt ways since March 18, 2022 – We are incredibly grateful for you! We continue pushing forward hour by hour and day by day with your support. Thank you so, so much!

Harv & Mom

Dad got a poop bandage on his head.

Then Harvey’s entire medical team got poop bandages on their heads.

Dad joined Harvey on his first school field trip.

Learning firefighting skills at the fire dept. open house.

Watching the new Paw Patrol movie.

Hattie & Harvey showing off their freshly carved pumpkins.

We either found an awesome Halloween decoration or a large crime scene.