A postponement and a Mother’s Day explosion
Well friends, we have had an absolutely wild week.
It was supposed to be a rather anti-climactic week.
A bit of a rest after all the invasive procedures during the first week of May and before chemotherapy.
Yesterday, Adahlia was supposed to be admitted for a 60-day hospital stay.
Today, she was supposed to start chemotherapy.
As of last Tuesday morning (around 10 am), this was still the plan.
But by Tuesday afternoon (around 4 pm), it wasn’t the plan anymore.
How is Adahlia doing?
Adahlia is amazing. She’s handling this all really well.
She had some tough days of pain and we’ve been processing the realities of transplant, Diamond Blackfan Anemia, and the healthy, unrestricted life she longs to live.
We’re really happy that Adahlia has had no complications from her recent procedures. Everything has healed beautifully and well. In fact, she was back on her skateboard (shhh… don’t tell her doctors!) and challenging me in soccer just four days after her last procedure, the bone marrow biopsy.
Since then, we’ve gone on bicycle and scooter rides (yes, I ride a scooter alongside her) and based on the grins we see on the faces we pass, I do it with much less coordination!
She’s made art in the Ronald McDonald House’s Art and Crafts room, and we’ve baked muffins in the communal kitchen. We’ve gone on walks in the rain and seen rainbows. She’s also kept up with her classmates in regular schoolwork and in French.
We’ve also taken up tennis. It turns out that Adahlia has a knack for it. She doesn’t get it from me - tennis is NOT my sport. We’ve played nearly every day since last Thursday.
Even though she still has a central line, Adahlia wants to play and be active. She’s still a daredevil. She’s here to live. A line in her chest and neck slowed her down a bit, but not for long.
Meanwhile, I am e.x.h.a.u.s.t.e.d. But, still showing up.
The big news: Adahlia’s BMT has been postponed.
So, what happened last Tuesday?
It turned out that one of the labs for Adahlia’s donor came back positive for an infection. While this infection isn’t a big deal for the donor (she didn’t even know she had it - she didn’t have any symptoms of an infection), it could have been a VERY big deal for Adahlia.
Unfortunately, Adahlia won’t have a working immune system at all after transplant. The immune system is the body’s defense against invaders like viruses, bacteria, and even fungi. It basically says, “Hey! This body is ours, and it belongs to us, so, yeah, I know it’s nice living here… but GET OUT!”
Adahlia’s immune system won’t be fully ready to defend her body for about a year after transplant. If she got even a little infection, it could quickly take over and really hurt her. It could happen even with an infection that wouldn’t normally make people sick.
So, when the doctors got that lab result back, and they realized that the donor had a silent (which means there are no symptoms) but active infection, they cancelled the transplant. Even if I had insisted that we go forward with transplant (which I wouldn’t have done), the doctors would have refused because it wouldn’t have been safe.
What does this mean for her transplant?
Right now, the doctors and transplant centers are trying to figure out the next best steps. We don’t want to put Adahlia through any unnecessary pain, and that means we don’t want to have to repeat any procedures or tests or exams unless it is absolutely necessary. For example, we don’t want to have to repeat the biopsy. If Adahlia has a transplant within the next several weeks, we won’t have to repeat it. But if we wait too long, we have to repeat the biopsy to make sure nothing has changed in her marrow.
Currently, Adahlia still has her central line. Every day that we don’t go to the hospital and have the nurses “flush” the line, I have to flush it myself. Flushing a central line means I need to send fluids through it using a syringe (like Adahlia does for pretend with her stuffy - see the last post’s video). It keeps the lines clean. Luckily, I am a doctor of acupuncture with training in Injection Therapy, so I have lots of experience with safe handling of syringes AND I’ve been trained by the nurses here specifically in central line care. But if I’m being honest, it still bothers me a bit to have to flush her line. I have a great imagination, and it’s tough to know I’m sending fluids straight into her heart. It is a LOT of responsibility.
What’s it like to have a Central Line (or Hickman Line)?
Having a central line is not awesome for Adahlia.
For example, Adahlia can’t go swimming with it in her body. This is because a central line is like a freeway. Let’s say you got a scrape on your arm and your scrape got infected. That infection would get surrounded by your immune system so it wouldn’t spread through your whole body. But a central line is a freeway traveling straight into the big, deep veins of your body. If the line got infected, that infection could get straight into your blood stream and spread quickly before your immune could surround and stop it.
Even though Adahlia still has a good immune system with plenty of defender cells, the infection would likely spread quicker than her fighters could get rid of it. That would be bad. So, she can’t go swimming. This is a huge bummer because playing in the water on hot days is one of the best parts of summer, right?
If you’re wondering if she could just have the central line removed until her transplant, then we are on the same page. She could have it put back in right before transplant. (Remember, the central line is needed to get chemotherapy and other medicine into those deep veins and quickly through her body during transplant).
Of course, Adahlia doesn’t want to have another surgery to get a new central line. And even if she got this one out, we’d still have to be careful, because we don’t want her getting sick right before transplant (that would force us to postpone it again). But the plus side of getting her central line out would be that she could go swimming in chlorinated pools and have 4-6 weeks without worrying about it so much.
What will we end up doing? We’ll see. We’re talking it out with her doctors and deciding as a group what would be best. It’s Adahlia’s body, her summer, and her childhood, and she’ll be the one who has to have surgery again if we take it out. So, we’ll do what Adahlia wants to do, as long as it is safe.
When is the new date for transplant?
We are still working this out. First, we have to give the donor’s body enough time to clear her infection so it is no longer active and potentially dangerous to Adahlia.
Then, we have to work around the donor’s schedule, Seattle hospital’s transplant schedule, and the schedule at the donor’s hospital. Based on what we know so far about the Seattle hospital’s schedule, we believe it will be mid-July. If mid-July doesn’t work, we will try for mid-August. We should find out when everyone is available and get a firm date that works for everyone sometime over the next week or so.
The only date we have firmly vetoed is a transplant during her birthday. I feel like that would be unnecessarily crappy. Don’t you agree?
The Mother’s Day Mishap
“One of these muffins is not like the others; one of these muffins is not the same.”
Okay, so it wasn’t really an EXPLOSION. (Thank goodness.)
But there was a LOT of smoke — and it was all due to the gift of a Mother’s Day muffin.
Here’s how it happened:
A Mother’s Day explosion of a different sort … so much love!!!
About a week ago, Adahlia asked me what I wanted for a Mother’s Day breakfast. I requested a picnic, so she planned one. On Mother’s Day, we went out and carried trays of food to a flower field nearby, having a picnic in our pajamas. <3
She drew me pictures and gave me some really thoughtful gifts. I love sparkling water, so she spent over a week gathering one each of “the entire collection” of flavors of sparkling water offered at the Ronald McDonald House. I’m actually drinking tea from another of her wonderful gifts right now. She insisted on buying me things even though I protested that I wanted her to save her money. (Can you guess which gift I’m using right now? It’s the mug that says “mama.”) <3
It was a really sweet and special time.
But the highlight of the day was a very burnt, stinky, and hard-as-a-rock muffin.
You see, we had made chocolate, banana, and pecan muffins together last week.
And as part of my Mother’s Day breakfast, she wanted to heat one up for me.
She asked me how long she should microwave a muffin.
I answered: “20-30 seconds. Push ‘Time Cook’ first, and then push the 3, otherwise it’ll immediately start up for 3 minutes.”
Unfortunately, all she heard was “<blah blah, blah blah blah blah blah blah> 3 minutes.”
(Oh noooooooo….)
Oh, yes. About 2 minutes and 45 seconds later, dark grey smoke was billowing out of the microwave and rapidly curling across the ceiling. Luckily, I was in another part of the kitchen and other adults were sitting in the dining area. When we saw the smoke, the nearby adults and I reacted immediately to make sure there was no threat of fire (when we opened the microwave, the muffin wasn’t on fire). But there was LOTS of smoke. We opened the doors and turned on all the vents to get the toxic smoke out of the kitchen.
Adahlia and the Muffin that almost took out the Seattle Ronald McDonald House
It’s important to remember that whenever there is a potential fire emergency, always:
Immediately get to someplace safe
Get help to stop the fire.
It is never “worth it” to take photos or a video instead of getting to safety and saving lives and homes. But afterwards - AFTER making sure everything and everyone was safe and before we threw the stinky muffin in the trash - I took this video and a few pictures.
I don’t think it is a secret that most moms LOVE Mother’s Day. We love the cards and crafts, the rhyming poems, the handmade drawings and the handprints. I treasure all the Mother’s Days I’ve ever spent with Adahlia. She means the world to me.
And I’ll never forget the Mother’s Day that Adahlia almost burnt down the Seattle Ronald McDonald House in order to make me a special Mother’s Day muffin.
What else happened? Oh, nothing much. Just that I lost my wallet.
Yup.
I know that sounds really foolish, but I’d been reeling from the procedures and the big news and changes. After all, I love Adahlia. None of this is easy for a mom.
This is Adahlia’s “I’m about to beat you at ‘Crazy 8s’ AGAIN!” face.
I’d been feeling a little overwhelmed. But with transplant postponed, we decided we should go out for a Saturday breakfast. We played “Sleeping Queens” and “Crazy 8s” while we waited for our food. (Adahlia won “Crazy 8s” twice in row).
We then drove to a large lake and park, scootered around the lake, drank some lemonade, found some tennis courts, and enjoyed a long afternoon of physical activity and being outdoors. Eventually, exhausted, we went back to our car.
But my wallet (and Adahlia’s “Crazy 8s” card deck) did not come with us.
Let the games begin…
On Sunday, after a very memorable Mother’s Day muffin and picnic breakfast, we went back to the tennis courts. When we arrived, we saw a note on the bench. The note said a wallet and a deck of cards had been found and that the items would be left with Lost and Found with Seattle Parks and Recreation.
What was my reaction?
“Oh, some poor person lost their wallet. I’m glad someone honest found it. And a deck of cards, too? How odd. I wonder if... nah, it couldn’t be ours.”
We played a few hours of tennis and left.
On Monday, I began looking for my wallet so I would have my driver’s license at the hospital. I couldn’t find it. We searched our room, our bags, our pockets, and our car. Twice.
We were out of time, so we gave up and simply went to her hospital appointments. When we came back, we looked everywhere again.
And then I remembered that note at the tennis court.
With a sinking feeling, I told Adahlia, “I think that note was actually meant for us. Didn’t we have ‘Crazy 8s’ with us on Saturday? I haven’t seen it while we’ve been looking for the wallet. I don’t think it is here. And ‘Crazy 8s’ is a type of card deck. Maybe they didn’t specify what kind of cards because it is a test - they want to make the person who says that the wallet is theirs describe the wallet and deck of cards.”
Adahlia agreed that it all made sense.
…. and that we’d better hurry to the park and see if the note was still there.
It was.
But how were we supposed to find my wallet?
Seattle Parks and Recreations has a lot of buildings.
Surely, no one would take a wallet and then tease about giving it back.
Was it some sort of game?
I called and emailed Parks and Recreation but when they called back, they said they didn’t have a general Lost and Found. They weren’t sure what the note writer meant by saying they’d turn it in to them. They recommended that we check with the front desk at the nearby community center and at the boat rental shack.
Neither location had my wallet or our cards. I gave both of them my information in case the finder simply hadn’t had a chance to turn it in due to work, etc.
By now, I was feeling pretty poorly. A wallet is a very tempting thing. There are many people who are honest, but every set of hands that touches a wallet is one more set of hands that may be tempted to keep the money in it, misuse the credit cards, and throw the rest (including my driver’s license) away. That would not be awesome. I checked online and no one had used my debit or credit cards yet. So…
There was still a good chance we would get my wallet back — and Adahlia’s much-loved set of “Crazy 8s” cards.
I decided we had one more move. We went back to the tennis court park bench and I left a note of my own, including my phone number and asking the finders to please call me. I figured that they would probably come back to play tennis at some point… right?
That night, around 7 pm (and after Adahlia shot me in the eye with a dart from her nerf gun), I checked my emails and saw a surprising message from the contact form on Adahlia’s website!
That’s right. The email inbox for Adahlia’s Adventures had an email with the subject line: FOUND WALLET.
It turns out that a very nice man and his 9-year-old son were the folks who found my wallet and Adahlia’s “Crazy 8s” cards. While looking for my contact information in my wallet, he found a small stack of the cards I had made with the QR code for Adahlia’s website. (I give these small cards out to people we meet whom we feel a connection with and want to invite to follow her journey). He went to the website, read about Adahlia’s upcoming transplant, and realized he had most likely found our wallet.
In a strange synchronicity, it also turned out that his twin sister had once had cancer, had undergone chemotherapy, and also had a bone marrow transplant.
Adahlia’s website had saved the day!!
And connected us with some amazing people.
We drove to meet them and were reunited with our lost items.
The best part?
We made some new and special friends.
What is luck?
There were other unbelievable things that happened recently that could also be considered bad luck.
On Monday, as I briefly mentioned, Adahlia shot me in the eye with a nerf dart from her nerf gun. I shouted, “Oh God, whyyyyy?????” as stars and darkness exploded in my vision and she buried her face in a pillow to stiffle her laughter.
And that’s not all.
On Sunday, shortly after the muffin meltdown, there was an unbelievably bad miscommunication with a guest staying at our house and our normally very reliable cleaning team. I tried my very best to make the guest happy, but ended up refunding them and losing over $1k of income that pays our mortgage.
Now, any of these things - from Adahlia’s transplant postponement to the muffin day mishap to losing my wallet to losing $1k to a dart in my eye - could have made for a series of pretty terrible, horrible, no-good, very bad days.
Combined, I could have fallen into very deep despair.
Adahlia and I both wondered: “How many more bad things could possibly happen???”
But were they really all that bad?
When we thought about them, we knew there were good points to them, too:
First, it is wonderful and great that we caught the donor’s infection before it was potentially transmitted to Adahlia. That is a very good thing. That is lucky.
Second, it is wonderful and great that no damage actually happened with the Mother’s Day Muffin Meltdown. Now we have a silly and memorable story. That is also a very good thing. That is lucky.
Third, it is wonderful and great that kind and honest people found my wallet. Now we have new and amazing friends who also deeply understand our current stresses. That is also a very good thing. That is lucky.
In addition, my vision quickly recovered, and maybe those guests needed to be someplace besides our house. It is still possible that every single bad thing will turn out to be a good thing.
How do we know if it’s bad luck or good luck?
There are many old stories about the nature of good luck and bad luck. About how until we know the end of the story, we don’t know if something was actually good or bad.
When you’re in the middle of awful things happening, it can be REALLY REALLY REALLY hard to see how everything will turn out okay, much less turn into good luck.
Because painful things can be truly painful.
And bad things happening can make us afraid that something even worse will happen.
Sometimes, when truly painful things happen, and your luck is rotten luck, you need to let all your pain and sadness and disappointment just be instead of trying to ignore or escape from it. We shouldn’t try to numb ourselves or pretend it isn’t real. Because bad things ARE real. You owe it to yourself (and to what you loved) to let that loss be real.
But when we experience bad luck, we also learn something about ourselves.
We learn more about what we really care about, how deeply we care, and what’s important to us for the future.
We also learn that bad luck can’t destroy us.
And that is a very powerful thing to learn about yourself.
Turning bad luck into good luck
Adahlia finds a ladybug at the park on Tuesday, 5/16/23
Bad luck *is* bad. I’m not taking anything away from that. For example, it is not very lucky to be born with DBA. No one wants to spend their days getting poked in hospitals, having to take medicine, or not being able to run as fast as they want.
But bad luck can also be blinding.
And you don’t want to be blind to good things coming your way.
After you allow space and time to feel sad and frustrated, it can be helpful to allow space for bad luck to turn into good luck, both for you and for other people.
When life is not awesome, it can be helpful to say to yourself, “I am trying and trying to make things better. Instead, things are only getting worse. I am so sad.” Own it.
And then add: “If this can get better, I am open to it.”
Keep thinking creatively and keep trying your best. Ask your God (or whatever divinity you feel connected to in your heart) to help you so that you can learn from the bad luck and make it into good luck.
And when you cannot think of anything else to do, let yourself rest.
Life is like a story.
No one knows how any story will ultimately turn out.
But I do know this:
I am so lucky to have Adahlia’s love in my life.
And even though things are hard for us, I am lucky in other ways, too.
When things get hard, who and what can you trust?
Transplant has so many complex variables that it can be overwhelming.
It is hard when you feel like you can’t trust things to turn out okay, even when you are trying your best.
Childhood is like that. I remember how being a kid means you need to trust adults to be kind and to make the best decisions. To take care of you. To put you first. I remember how sad it would make me when I didn’t feel like adults cared. I remember how angry it would make me when the adults were mean. How scary it could be. How hard it all was.
I must be so hard for Adahlia to trust her adults. Even though it may sometimes seem like people aren’t looking out for her best interests, we really are. The doctors proved that by postponing her transplant AGAIN (it was postponed three times in 2022 and once earlier this year, in January 2023). They don’t want to jeopardize her health and life. They want this transplant to go well for her.
Meanwhile, I am definitely trying to help. I want her to have the best life possible. The reason we came to Seattle is because these are the very best transplant doctors for Diamond Blackfan Anemia and they have the very best medicines. Every time we’ve moved (and it’s been a lot!) it has been because I’m trying to give her a better life (even though leaving friends and home is so very hard).
Sometimes, it can seem like people aren’t trying to help. That they just want to do their own thing, and they don’t really care about you. I’m not going to tell you that that’s never true - not everyone is capable of caring and some people act like they don’t care at all. Actions speak WAY louder than words. Part of life is learning how to discern (decide) who you can trust. And part of life is learning to be the sort of person that people can trust to do what is right no matter what kind of bad luck has happened to you.
Onward
Well, this was a long post! But we had a lot to share, and it was a few days in the making.
Believe or not, I’ve already got more to say, so I’ll try to be more timely with updates. More soon…
