A Summer to Reckon with

It has been a few months since our last post.

So much has happened.

It seems as though every time I was ready to update everyone, something else would happen and cause me to a pause. Because, just maybe, everything would change again.

And it did.

Over the last few months, Adahlia has had more tests and exams and procedures than I have any desire to count. Some were fairly easy, if time-consuming: echocardiograms, pulmonary function tests, EKGs, X-rays, MRIs, nerve and neuropathy tests, strength and coordination (PT/OT) tests, and dozens upon dozens of blood and urine laboratory tests (yes, all those ‘s’ are accurate) to measure the functioning of pretty much, well, everything in her body. Many tests were invasive. Since May, she’s gone under anesthesia four times. She has eight new incision wound scars from pre-transplant procedures.

And this does not include the “regular kid injury” she sustained when given leave to visit family and friends in Colorado in June, during this summer’s first transplant postponement. What happened?

The short version is: In the evening of the last night of our visit, as a mom friend and I talked over the remains of an alfresco dinner, Adahlia and a couple of her friends were turning cartwheels, doing handstands, and playing games of tag on the restaurant’s lawn. While barefoot, Adahlia stepped on a piece of metal landscaping around a tree. The metal cut deep into her big toe in a horseshoe shape, like a shark bite. The laceration required nine stitches. It looked ghastly. But she was lucky, and did not sever any nerves or the major muscle under her toe. The wound was concerning for a while, and she was unable to walk or enjoy major summer activities. But now it is completely healed.

When Adahlia’s May transplant was postponed (due to donor infection), transplant was rescheduled for the end of July. Transplant is not something that can happen in a snap. It requires many complex pieces (schedules at both the donor center and the child’s hospital, schedules of surgery teams, the donor’s schedule, and the schedules of all the departments that must check all their boxes prior to a transplant) to align.

Pre-transplant workup (and transplant itself) is a bit of a Logistics Beast.

But everything was progressing, and Adahlia underwent another bone marrow biopsy, and I kept intending to reach out to you all, to let you know things were ramping up.

I wanted to give you all time to get T-shirts as part of her crew of supporters - that’s a big deal to transplant kids, to know that people “out there” haven’t forgotten them.

But something kept holding me back.

And then, our lead transplant physician called me less than a week before chemotherapy was scheduled to begin (for the second time this summer), telling me that in her medical judgment, transplant needed to be postponed (again, for the second time this summer).

This time, postponement wasn’t due to an infection, but because Adahlia’s bone marrow biopsy had unexpected results. Her sample showed signs that her marrow was potentially trying to recover. She had many, many more precursor blood cells than she used to have. Her cellularity had improved from 5-10% to 15-70%, with an average of 40-50% cellularity. Our expert transplant physician called upon her expert colleagues, and everyone was perplexed. But the consensus was it was best to postpone transplant.

Why? Because any transplant is a big deal, and a bone-marrow transplant is a huge deal, with life-altering consequences that can be very positive or very negative, with a lot of shades of grey in-between. It is not something to be done unless absolutely indicated.

So here we are.

Postponed.

While we wait-and-see.

We (along with her team) have decided it would be just as effective (and less invasive/traumatic) to check her peripheral blood stream over the next few months as it would be to check her bone marrow via more biopsies.

If there is indeed something changing in her marrow - for better or worse - it will eventually show up in her blood.

How’s Adahlia doing?

Adahlia has been through a lot since she said goodbye to her classmates and chickens in March…

… and in April, said goodbye to her cats and freedom to play in the dirt, the water, and with other kids.

She thought she was making those sacrifices so she could be cured.

Instead, she had 4 months of hospital procedures and many stops-and-starts.

We’ve made the most of it (as you can see from some of her adventures posted on Instagram) and I’ve done everything in my power to ease the burden (such as reuniting her with her cats) but the truth remains that every one of our adventures has been colored with the stress, pain, grief, and worry about what’s happening or has happened or is about to happen to her.

Taking this time to allow her marrow to do, well, whatever it is doing is not only medically indicated, it will allow her some time to return to being a kid.

Adahlia needs a break from big decisions, serious (and scary) discussions happening around her, and impending, consequential medical procedures.

Transplant is not off the table.

But it has been set aside for right now.

And that is the right thing to do for her right now.

Adahlia isn’t at an age (and her blood disorder isn’t at a stage) where she can or should be taken to transplant against her will. While the decision ultimately rests with me and her doctors, she’s at an age (and her illness is at a stage) where her “buy-in” is vital. It wouldn’t be psychologically healthy to force her into transplant against her will, nor is it appropriate to lie or withhold information from her about what’s happening. She’s aware her bone marrow may be trying to recover. She is involved in her treatment decisions, and she wants to wait and see.

Our plan is to back off on pre-transplant procedures (instead of resuming them for the 3rd time in less than 6 months), and return to our status quo of blood transfusions for the next 3-9 months. During that time, we’ll be watching her blood counts closely…

…allowing her to be the #dbamazing #dbadventurer that she has always been…

…and embracing every moment of Life together with our friends, family, neighbors, and strangers.

Perhaps next summer, we’ll be headed to transplant.

We certainly hope that if so, her pre-transplant procedures will flow forward in a way that helps us to remain confident that it is the right path...

… instead of blocking us at every turn…

… which is what has happened for the past 2+ years. (We started transplant consultations with hospitals in July 2021).

In the meantime, we hope you’ll start (or continue) to follow Adahlia on Instagram. We’ve been rising above the stress to make the most of our time in Seattle and the surrounding areas. She’s been playing tennis and enjoying city and neighborhood escapades as well exploring the coast and adventuring through the temperate rainforest. :)

We’ll continue to post her inspirations and adventures on Instagram, and use this website for longer stories, medical, and “big” updates.

What lessons can be learned from our pre-transplant experience?

For now, my wisdom to share is this:

It is important to be Courageous in Life.

And Courage in Life takes many forms.

Sometimes, Courage is pushing forward past obstacles into what is Dangerous or Frightening.

Sometimes, Courage is recognizing that it is time to take a step back, even if doing so may look like cowardice or retreat or failure to others.

It isn’t.

And what others think ultimately doesn’t matter.

When things change, only a Fool stays stubbornly committed to the path they started out on. Life isn’t static, and sometimes, what was the right decision at one time is no longer the right way to go. Sometimes it becomes right again in the future, but is still not right, right now.

Few decisions are one-and-done. That’s just not how life works. It’s why people who fall in love sometimes separate. It’s why people change careers. Situations change, values change, needs change, bodies change, and we have to be honest about those changes. What seems foolish now can be wise in a month or a year, and vice versa.

In Life, it is important to gain as much Knowledge as possible to inform your decisions.

And to be open to considering new information as it comes in.

Wisdom is about Timing.

Now, I am not necessarily wise.

But as a mom, it is still my solemn duty to make wise choices for my child.

And I take that seriously. The choices I make change her life for better or worse.

That’s kind of a huge deal. A big responsibility.

So, I try hard to make wise decisions.

Life is many things, but most people would agree that Life - with all its pressing decisions -is challenging.

My hope is that sharing some of these big decisions that we face will somehow make some of your tough choices a bit easier.

We believe we can keep moving forward, and you can too.

Much love to you and yours.