Here We Go!

Last week I was doing housekeeping on my phone, deleting years of spammy emails while waiting for visiting hours to start at the hospital. I pulled up all the emails from a local Hong Kong newspaper, scrolled down page after page to select them all, and then hit the trash icon. When I got back to 2021 (don’t judge) I found the daily email the paper used to send with all the Covid stats for Hong Kong. And I thought, wow - weird. I barely remember that.

We used to breathlessly await the updates, trying to stay on top of the latest restrictions and guidelines. We lived (and some died) by those daily messages. It was all consuming. But now that time period is just a blip, a faded thought of whoa, did Hong Kong Disneyland really close when there were only five cases? Did they really send people who tested positive to quarantine camps and fine us $5000 HKD if we didn’t wear a mask? Wild.

I happily deleted all those emails, thinking good riddance to the weird moment of time when we were so worried and careful, unable to plan ahead more than a week because everything changed so frequently. And then I had a brief, hopeful vision of some future date, years down the road, coming across a digital artifact of this time we’re in right now, worried and careful, unable to plan ahead, and will once again think, wow - weird. So glad that’s all in the past! And then I’ll look at my strong, healthy husband and ask if he remembers how crazy 2025 was, and he will chuckle and say barely. I’m holding onto that vision, grateful for a possibility of a time when this brutal, all consuming experience is thought of as a mere blip!

In my last post I mentioned the rare type of cancer we’re dealing with, Mixed Phenotype Acute Leukemia with the Philadelphia Chromosome (MPAL, Ph+), doesn’t have a tried-and-true single recognized treatment plan. I also shared the treatment is different for Myeloid vs. Lymphoblastic Leukemia. Because he has both, plus that genetic mutation, his treatment is both broad and deep, trying to cover everything.

In medical lingo, there are treatments with “curative intent” and treatments which are “preparatory measures for other treatments.” In other words, there are treatments to bring you back to full health on their own, and others which prepare you for the further treatments to bring you back to health — or “cure” you from disease.

The multiple rounds of chemotherapy Michael has gone through, the eight sessions of head radiation, and the targeted therapies to inhibit the mutation are not, on their own, treatments with “curative intent” for his type of Acute Leukemia and genetic mutation. The rate of relapse for how quickly the cancer will return with only those treatments is measured in months, not years. Everything he has been through this year has worked together to get his MRD or Minimal Residual Disease to the lowest point possible in preparation for the main event with “curative intent”: a bone marrow transplant.

This is where the faulty, mutated bone marrow growing in Michael is wiped out with three days of heavy chemotherapy and three days of full body radiation, and then fresh, healthy stem cells are transplanted into Michael to take root and start making brand new, non-mutated blood cells.

We’ve been calling it a bone marrow transplant, but most donors now give stem cells in a practice called Peripheral Blood Stem Cell Harvesting instead of the previous procedure where bone marrow was removed from the back of a hip bone under general anesthesia. The current procedure involves hooking up the donor to two I.V. lines, one in each arm. Over the course of five to six hours, an aperesis machine slowly draws blood from one arm, separates the stem cells from the blood, then returns their blood back into the other arm. This usually is done in one day, but sometimes it is done over two days, particularly when the donor weighs less than the recipient. Prior to donation, the donor will have a few days of injections to stimulate stem cells in the bone marrow so there’s a lot to “harvest.” It’s still possible to donate actual bone marrow, but medical advances mean that happens more rarely… it carries far more risks for the donor.

From the day Michael was diagnosed, we were aware he would need the transplant for long term success at treating his type of cancer.

In January, three people were tested to find the closest genetic match to be a donor — Michael’s youngest sister, Heidi, and our two sons. Heidi was a full match. The possibility of a full match with a full sibling is one in four, but the real world statistics of that happening are closer to 11%. Everyone was quite thrilled! Our sons were both a half match, the expected outcome as they get half their genes from Michael. Fun fact: in the wild game of chance which is genetics, as full siblings they do not match each other at all. They would not be able to donate to one another should that ever be needed. This makes Heidi and Michael being a full match that much more amazing to all of us!

We walked in pretty confidently to the initial transplant team meeting at Queen Mary Hospital back in March, feeling wealthy with donor options. But within the first five minutes of the two hour meeting, Heidi was discarded as a donor due to a previous health issue. It was devastating! Then, based on the preliminary reports they chose our older son* as he weighs more than Michael. Potential donors go through exhaustive physical testing to make sure they are healthy enough to donate. When our older son’s results finally came in after a tense month of waiting, a previously unknown health issue was revealed. This meant that like Heidi, he was also discarded as a donor. Once again, a shocking turn of events because instead of three possible donors we were down to just one, our younger son, Benjamin.

Benjamin then went through the same substantial testing our older son had done and we spent another tense month waiting on results. When he was called back in to redo a chest X-ray we tried not to read too much into it. Last week we asked Michael’s doctor at Princess Margaret Hospital for an update, not wanting to dwell on what would happen if Ben was also discarded as a donor. She said we’d been scheduled for a pre-transplant informational meeting, which most likely meant Benjamin was a go, but it wasn’t her place to confirm it. Oh the suspense!

Yesterday we finally got the long awaited news. Our whole family taxied to Queen Mary Hospital for the pre-transplant meeting to get the details together at once. Benjamin will be the donor and the transplant is happening sooner than we expected! While we thought it would happen late summer/early fall, the transplant date, Day Zero, will be Wednesday June 25th. Because Ben weighs less than Michael, they are scheduling it for two days. He’ll likely go back to donate a second day, Thursday June 26th.

So we’ve got some official dates for the calendar, and more posts lined up on Plucky Day to share additional information regarding the transplant process (and believe me, the whole procedure is going to require so much more courage than anything we’ve gone through yet), what comes next, and what life may look like for the next weeks, months, and years.

Here’s what our upcoming month looks like (knowing anything can change at any moment):

Sunday June 1: Michael will be admitted to Princess Margaret Hematology Ward, potentially the last stay there for a very long time as his care will be transferred to Queen Mary Hospital following the transplant.

Monday June 2: Michael’s PICC line in his arm which he received chemotherapy with will be removed, replaced by a CVC (Central Venous Catheter, also known as a Hickman Line) which will go in his chest. The CVC is better option to receive the transplanted stem cells. He’ll be released to come home later that day and we will spend the next two weeks staying as healthy as possible so the schedule is not jeopardized by unexpected illness. Pray for supernatural health upon our whole household!

Monday June 16: Michael will be admitted to Queen Mary Hospital, into one of their twenty-four transplant isolation rooms, where he will remain for 6-8 weeks. He will be unable to have non-immediate family visitors during this stay, so Zoom and FaceTime will be his friend!

Friday June 20 through Tuesday June 24: Michael will undergo three days of intensive chemotherapy followed by three days of full body radiation (more on this in a later post).

Sunday June 22: Benjamin begins twice daily injections to stimulate the production of stem cells. He may have side effects like bone pain and general flu-like aches as his body begins to produce more cells within his bone marrow. Pray this process is fruitful (lots and lots of healthy stem cells) and painless for our brave Ben! This is also our 29th Wedding Anniversary. Definitely not how we planned to mark this milestone, but obviously we’re going through all this so we can have so much to celebrate when we get to thirty, forty, fifty and beyond!

Wednesday June 25: Transplant Day Zero! Stem cells are taken from Benjamin starting in the morning, then transferred fresh into Michael that evening (more on this in a later post).

Thursday June 26: Reserved for second day of stem cell harvest and transplant if needed.

Then we wait and see and hope and pray for this to be a rousing success while earnestly looking forward to the day we can barely remember the frightening and brutal moments which make up this time in our lives.

We’ll be sharing more details shortly, but wanted to get this out quickly so you can hold us closely in your thoughts and prayers for the month of June. It’s gonna be a doozy!

*While many of you may know our family personally, this is a public newsletter which can be read by anyone on the internet. Each member of the family has a different comfort level of sharing personal information, and we want to respect that desire for privacy. Our oldest son prefers not to be named here, while our younger son, Benjamin is okay with it.