Home (After Transplant)

We did it. Gabrielle made it home after 78 days of transplant.

Thank you nurses, doctors, social workers, custodians, Red Cross folk, and volunteers at BC Children's Hospital. We said it over and over again, there is something special about Children's – especially the 3B oncology ward – and it has everything to do with you and your caring and compassion.

Thank you Derek, Gwyneth, Phaedra, Ashley, and Aaron for spontaneously helping me sterilize the house until late last night, and Stephanie for the dins.

Thank you Wayne, Jane, David, and Doreen. Your generosity as parents through this has been boundless.

Thank you Laronde Elementary community, especially the teachers who made us so many meals, and little Emmett for your amazing thoughtfulness with the penny drive.

Thank you Amy's "Mom's Group" for all the meals and drop-offs.

Thank you Julie for the hospital sleep-overs which gave us a couple of nights home together with the boys.

Thank you Elena for keeping our home playful, wonderful, and stable. We're so lucky to have you.

Thank you friends and family for all your wonderful words and generous gifts ... they gave us something positive to talk about every day, and helped us keep going.

The most amazing thing through this was how much support we were given, and sometimes – especially on the tough days and weeks – we forgot to say thank you. Thank you to everyone we forgot to say thank you to.

And a big thank you to all the amazing families we met at the hospital. Your warm and knowing smiles made us feel like we're not alone. Like we're all in this together. It was so hard to see your children sick and struggling. You inspired us. Your being there supported us. It made us feel that we're a part of something special. Something greater. Thank you.

Energy, Time, and Tears

If there's one thing I've been able to self-monitor more than ever before (i.e. since Gabrielle was born), it's been why and when we cry. Like what's up with all the tears? Come on, get it together man!

So I did some serious internet research (i.e.wikipedia) and none of the explanations satisfied me. I did, however, find it ironic that "The question of the function or origin of emotional tears remains open."

Sure, we all know the various reasons why we cry. We shed tears of loneliness, helplessness, loss, physical pain, and, of course, tears of unmet expectations (see earlier post). And while I began writing this post with a particular idea in mind, it's become something more.

Let me explain, in my usual round-about way.

Energy.

Have you ever really thought about E=mc² before?  While I won't even pretend to say I get the complete concept, I get the gist, and it's pretty amazing.

Einstein's formula helped people understand just how much energy there is ... everywhere. Newtonian physics (which, sadly, is over 300 years old and the only physics our kids learn in schools) held that bodies of mass at rest don't contain much energy at all. E=mc² proved that there are massive amounts of energy in all bodies of mass, even ones that aren't moving or radiating energy.

Basically, "E" equals the mass of an object times the speed of light squared. I italicized those two words on purpose because ... well ... like that's pretty crazy if you think about it. The speed of light moves at 299 792 458 meters per second. So I'm like 210 lbs and I feel a bit queasy when my 1997 Accord gets over 150 km per hour (mostly because of the car, and - for the record - I would be totally comfortable at 240km/hr in my brother-in-law's Porsche). Anyway, the speed of light is fast, and that formula makes "E" almost incomprehensible.

To save myself time, I borrowed an example of just how much energy quietly exists here, there, and everywhere:

Assuming you could convert a 1 kilogram rock entirely into energy, how much energy would be released? This is a relatively simple problem. Using Einstein's formula...  

E = 1 kg x (300,000,000 m/s)ˆ2

Using your scientific calculator (or you can just trust us) that is 90,000,000,000,000,000 joules. This is roughly enough energy to power all cars in the US for a week!

So yeah, I guess that's why when they split a uranium atom (which has like a kajillion electrons and protons) it creates such a massive reaction. All that idle energy dancing around in harmony gets disrupted and suddenly erupts. A nuclear explosion. Energy erupts. Remember that.

Time.

Time is also a funny thing. While there's great debate about whether time even exists, we're definitely bound by it in our lives. We live right now. Moment after moment fades into the past. And who knows what the future will bring. But we live right now.

We're bound by now. We're bound by time. All living organisms are. But what's funny is that we're the only organism (on this planet) that contemplates the deeper mysteries of time. Even more, maybe we're the only organism that wonders what the future will bring, and the only one that reflects on times gone by.

I always think of this when I see dogs wearing those lampshades on their heads. They can't foresee or anticipate the future consequences of what their biting and gnawing will do to their healing wound. But we can. So we put lampshades on their heads to prevent them from doing it. It's really a wonderful and amazing ability we have. It makes me smile every time I see a dog wearing a lampshade.

At the end of the day, language allows us to do the above (or our brains do, if you want to get nit-picky). Language allows us to share our experiences. Our thoughts. Our feelings. You can tell your friend what you did yesterday, with words. You can tell your friend how you felt about yesterday, with words. You can tell your friend what you're going to do tomorrow and you're feelings about it, with words.

Could you imagine the dog with the lampshade doing that? Telling his neighborhood dog friends what the man with the knife did to him the day before? And how different he feels with some of his parts missing? How it feels like a part of him is gone? And how difficult it's going to be to come to grips with his new reality? With his new body? With his new identity? Or how he just feels "flat" ... like something more than his parts are missing? Like there's nothing really to get excited about anymore? And how - for some weird reason - he now has patience to listen to what the female dogs on the block are trying to talk to him about? How they actually have feelings, and just want to be listened to, instead of impatiently jumped on? And how they don't like being called "bitches!?" And how he panics and catches himself and shrieks to his friends, "Like what's going on guys?!" And then he worries about whether Buster and Spike will still want to hang out with him, or whether they'll start teasing him?!

But that's just the miracle of the last paragraph. If you laughed or smiled it's because you saw that conversation going on in your mind. That totally absurd silly conversation existed in your mind. It was real. Just as the lemon in this exercise is sort of real (for most of us, if you do the exercise right).

What that means, though, is that more than right now can really exist in our minds. The past, present, and future can exist in our minds. So can someone else's past, present, and future. So can anything, really.

Not only can our minds transcend time, but our minds can transcend us.

That's how we're different. That's how we're human. It's amazing, really.

Tears.

(Let me just say that I'm speaking metaphorically here, not scientifically.)

So we all know that energy is both positive and negative. It's both, always, and at the same time.

I believe love is the human form of the positive energy force, just as I believe hate is the human form of the negative energy force. Love breaths life into things. Hate sucks life out of things.

Energy is free. It's free from time. It's free from space. It flows.

We're not. We're bound by time (i.e right now). We're bound by space (i.e. our bodies).

So what are tears?

Like I said, I've never cried more in my life. And a part of me is embarrassed that this blog has made several people cry too (like are Buster and Spike gonna want to hang out with me any more?) But the tears come quick, and they come often. Why?

I think it's funny that "the function or origin of emotional tears remains open." It's seems so obvious to me now.

I think our "emotional" tears are rushes of energy. I think our ability to exist things in our minds – things that aren't right now – overwhelms our "carrying capacity" ... and we cry.

We cry when say goodbye to a family member we know we won't see for a long time. We're not crying because they're walking or driving away. We cry because all the memories and feelings we've had with them, and all the memories we know we're not going to have with them, all of which are positively charged with love, come rushing into our hearts and minds in that very moment. Our mortal bodies that exist in the "right now" have to deal with this rush, this release of energy, like an atom splitting, there's a reaction.

And we shed tears.

The same thing happens to new parents when they meet their brand new baby for the first time. It's not the baby that makes them cry. It's the entire lifetime of forthcoming events that comes rushing into the very moment that makes new parents cry. Like an atom splitting, there's a reaction, and we shed tears.

So I guess I think of tears really differently now. They're really amazing sometimes.

Sometimes the thought of my little girl's short life - from the start to the end, with all its highs and lows - fills me up with tears. Sometimes her smile makes think about what life's going to be like without her one day, and that fills me up with tears. And sometimes when I'm cuddling her, I think about how incomplete my life would be if she were never born, and that fills me up with tears. The past, the future, and the hypothetical come rushing into the moment. I'm overwhelmed with love. With energy. With tears.

It makes perfect sense to me that "no other animals are thought to produce tears in emotional states" (link). And while I run the risk of losing my status with the Busters and Spikes of the world, I think it's worth saying:

Tears are beautiful.

Tears are magical if you view them in this way. Maybe that's what "emotional tears" are ... the physical response to our ability to transcend time and space. Maybe tears bring moments from the past and moments from the future into the present moment, freeing us from time and space. Maybe tears are what happen to us when we tap into the infinite amounts positive energy everywhere and all around us. To infinite love.

Sometimes I think tears are okay.

Sometimes I think tears are beautiful.

Laughter #5 ~ Indian Thriller

Exceptional

You can expect competence.

You can anticipate goodness.

But you just can't presume exceptional is going to be the norm.

Whether it's a friend, family member, colleague, server, teacher, doctor, accountant, receptionist, cashier, nurse, neighbor, or custodian – as soon as you expect everyone to be as incredible as the one superstar who is the exception to the rule, you're miserable.

I've definitely learned since Gabrielle was born, from medical staff to friends and family, to fully and wholly appreciate the people who are special and incredible ...

The people who are especially and incredibly competent ...

And learning to appreciate their exceptionality, instead of focusing on how others aren't like them, has been one of the wonderful lessons I've picked up through this.

The next time someone does something exceptional for you, let them know how much you appreciate it. It'll make their day and remind them that their extra efforts are not going unnoticed.

For what it's worth.

Day+60, Day+61

View from roof of BC Children's Hospital

It's been 2 1/2 months (73 days) since we first started at BCCH.  We have needed all the resources that the hospital has had to offer to Gabrielle to help her get through the rigors of a stem cell transplant.  But, I've had enough, I want her home and I can't help but feel that her home environment would be so much more healing then the hospital to help her in that last little stretch.   Her bright home with fresh ocean air, her own bed, and all the 'life' that comes with 2 lively, loving brothers and people in and out all day.  Contrast that to her dark hospital room with no window to the outside, lit only with fluorescent lighting.   I can't help but think how much your environment helps you when you're trying to heal. 

What a journey. March 11th she had her line inserted and recovered for the weekend and the nurses,  and doctors were very much needed.  Monday, March 13th was the first day of her chemo, and again, the hospital, the nurses, the doctors, were absolutely necessary.

Those first 10 days Gabrielle was very sick.  So sick in fact that I wouldn't ever take my eyes off of her.  I was scared.  I slept literally with one eye open and jumped up so fast any time I heard the machines alarming or beeping, or heard the nurses coming into the room.  I was so edgy and not at all relaxed.  I think for those first 10 days, we barely slept when we were with her.  I even remember thinking when she was having her episodes of seizures that it was worth it to stay up all night if it meant that she would be safe.  I didn't even question my own needs, you just don't when you're a parent and especially when your baby is sick.

March 23rd Gabrielle was transplanted and we got to see science and modern medicine at it's finest.  I couldn't talk while the doctor was transplanting her.  I held her hand.  I cried.  I laughed.  But I wouldn't take my eyes off her.  I hoped for a new beginning and a better chance at life.  I stayed with Gabrielle that night and, again, I couldn't sleep and I wouldn't sleep.  The alarms and the beeps kept me so on edge and I was so nervous for Gabrielle.  I had no idea what to expect and I was willing to do anything.

Enjoying some fresh air with Daddy

Since transplant we have gone through a whole series of ups and downs.  We haven't slept much at the hospital.  She is on so many medications and is taking medications to curb the side effects of the medications.  It's crazy.  Gabrielle has needed all of it to keep her going in the right direction, though.  She's needed to be there every single day. She's needed all of the doctors, specialists, x-rays, physiotherapy, and treatments.

Now, I can't help but feeling that she is so close to coming home.  A big part of me wonders if being in a different environment would help her to turn that corner we are waiting for.  She is only on a sniff of oxygen away from being in the clear, and her lungs are improving.

Day + 61 and I just got a call from Regan who woke up with her at Children's this morning. Argh. Her cough has gotten a little worse and they increased her oxygen again.  Please send Gabrielle some healing energy today.  Her family misses her so much and I don't know how much longer my heart can take it.

A different landscape

I read this poem shortly after learning about Gabrielle's diagnosis and I cried buckets the first time.  So much so, I could barely read the writing on the computer.  I read it now, 7 months later, and I still cry.  It's a wonderful poem.  Thank you to the mom's I've met online who also have babies with Gabrielle's diagnosis who shared this with me.  I find so often, I don't have any of the right words to describe the depth of what I'm feeling, and I find so often that poetry says it just perfectly.  Thank you poetry.  I have never appreciated you more in my life then I do now.  

WELCOME TO HOLLAND

by 

Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. 

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Day+58 Update

It's been over 2 months now that we've been at BC Children's hospital and I have to say, it really feels like our second home.  I continue to make my way around the floor as if I live there, helping myself to the medical supplies in the 'private' room, teaching some of the nurses how to use some of Gabrielle's equipment, and feeling as if our room is our little home on the unit.  We have gotten to know our neighbours, James and Michael love to play with some of the 'patients' and siblings in the playroom and you can often find James riding the bicycle in circles around the floor.

I am also really getting the sense that Gabrielle is getting close to being discharged.  Her lungs are improving and it is looking like her respiratory condition is caused by the coronavirus and not GVHD (graft versus host disease) which is very good news.  I am also getting the sense that the all-day-long cuddles are just not cutting it anymore and that she is in fact looking for her extremely-noisy-and-energetic brothers to entertain her.  Yes, I think Gabrielle is getting better.  The discharge process takes a couple of weeks as they need to train 'Nurse Amy' how to take care of Gabrielle at home.  I will be doing dressing changes for her central line, cap changes, heparin flushes as well as all the care for her NG tube. They are also getting oxygen therapy organized for our home (which entails a sleep study while in the hospital, house inspection and a whole bunch of paperwork!).

This week we had an amazing family night with the boys at the Vancouver Aquarium.  It was a very special "Dreamnight" where they opened the Aquarium up for only the families at the hospital.  Gabrielle had a fun visit with her grandparents while we took the boys out and enjoyed some time together.

I'm completely exhausted.

I can't wait to start at home with Gabrielle.

Expectations Kill

I have many people to thank for this post, and won't claim any credit for the ideas its premised on other other than what I've learned from their application. Thanks, in particular, to Virgina Satir, and to my Dad, who's been the greatest life-mentor and fatherly sage a son could ask for ...

Expectations kill. 

I had a meeting today with two oncology doctors about Gabrielle and her progress who expressed their delight in her improvement. Get pumped, right?

Wrong. Expectations kill.

In the same meeting, the doctors got up to point to the day in Gabrielle's second 40-day, wall-sized "counts calendar" to show me when they predicted we would be leaving the hospital and going home (we're on Day+54 or something) ... BUT! before I let them point to the date, I told them, "Listen, Amy and I don't expect to be out of here a second earlier than Day+80. We sit in this hospital room all day long and look at that calendar all day long ...  and ... well, if the day you point to comes and goes, how happy will we be?"

I hope Day+81 in the hospital doesn't come. Expectations kill.

About 3 weeks ago we filled up all of the day's in Gabrielle's first 40-Day "count calendar" (the big one on her wall that Amy fills in so wonderfully, noting all the eeny-teeny cellular achievements she makes every day). Like I said, the calendar filled up to Day+40, and about at the same time we were told we could expect to go home in a week or so. By Day+43 Gabrielle was sick again. It was clear she wasn't going home. In the hospital room, though, hung her "counts calendar" all filled up as we sat in the room moving through the Day+40's. The unsaid expectation the filled-up calendar hung around our necks was like an albatross for days. It was totally beneath our awareness until "Dr. Elaine" told us we needed a new calendar. "Duh!" Of course we did.

Expectations kill.

The other day I had in my head that I was owed some special acknowledgement from Amy (details irrelevant). She came home from the hospital, exhausted. Adorning me with special acknowledgement was the last thing on her mind. I said something curt. She replied. I was revved. I retorted. We fought. We wasted 3 hours of our 6-hour-afternoon at home with one another. What did it start with? My expectation.

Expectations kill. Especially expectations of mind-reading.

When people say "You have to," or, "You need to," or, "You should," ... what they don't realize is that their pushing their expectations (about how things should be or how things should play-out) onto you. When they project their expectations on to us, it pisses us off. Right? Right! But you know what's worse? I'll tell you: when you or I say "have to/need to/should" statements to someone else. Why? Because they'll resent you for it ... because ...

Expectations kill.

A mom figures her son will go to a local college and will be home for weekend dinners. A high school girl spends $1000 on a prom dress envisioning grad-night to be super-magical. A dad hopes he'll be able to afford the "family trip" once things improve at work. An elderly Grandma wakes up hoping for a phone call from her kids or grandkids. A Gr.3 student expects a gold star after printing her best large "G" in perfect calligraphic style. An entrepreneur expects "things will turn around this year." You think an event you're hosting will go a certain way.  You do something extra and wait for "Thank you."  You call someone and they don't call you back. You have a baby girl and think she'll outlive you.

Expectations kill our ability to adapt and react. They act as anchors that won't let us free when the gale winds of time are ready and willing to blow us to new and exciting places. Expectations resist reality. They create frustration, sadness, and anxiety.

Expectations kill when our obliviousness to them prevents us from evolving ... keeping us stuck at sea when the currents of life says we should do otherwise.

You Know You've Been in the Hospital Too Long When ...

1. You start developing a fondness for the hospital posters in the same way you adored the rock-band posters in your high school bedroom.

2. Your hands start cracking and bleeding from washing too many times and people ask you if you've been in a fight.

3. You not only start recognizing people in the hallways in your building, but in the other buildings too ... and several of them say "hello" when you walk by.

4. You scurry to get your afternoon coffee at 2:45pm because you know the Starbucks Frappy Hour starts at 3:00pm and the line-up will be five-times as long.

5. The doctors and you kind of look at each other and shrug your shoulders during morning rounds, instead of talking about your daughter's status and strategies, and then talk about their kids and their college plans.

6. You get annoyed when you see people use your secret bathroom ... even though there's nothing secret about it.

7. The lady behind the grill in the cafeteria asks, "The usual?" when she sees you.

8. You laugh out loud in the elevator when you hear people complaining about their long stay of two nights, and scramble to turn the laugh into a really fake sounding cough (yeah, that was awkward).

9. You discover hallway short-cuts that none of the doctors or nurses knew about (or even really care about when you excitedly bring them up and kind of look at you with that "Yeaaah" wince-like look on their face).

10. The social workers who have their weekly pot-luck in the conference room by your room ask if you want to join them ... and then, at the end, say you should join them again next week.

Community, Running, and Being Human

While I may lose some of you with this post, I have to write it because I won't be able to write anything else otherwise.

So a few things have got me thinking:

1. I'll likely outlive my baby girl, so the realities of mortality are front and center, and that makes you think about and appreciate things differently. Hence this post.

2. We're learning lots about Gabrielle's condition, and I'm becoming reacquainted with human physiology, and learning lots about cellular biology and bio-chem, which makes me realize that if you could zoom in and out of the real world with a fully accurate Google Earth zoomer – infinitely – I think we'd realize that us humans are only living at one level. This is not accurate. There's so, so, so much more to the wholeness of reality than what we perceive.

3.  The love and community and support we've experienced through this makes me convinced that our culture is half asleep, if not three-quarters asleep. This blog wouldn't be as read as it is if it didn't half-awaken those of you reading it ... striking a chord that you can't quite explain (you know what I'm talking about). While I've recently tried reading some spiritual and religious texts to figure out why this is, I've been having a difficult time marrying the content to my insights gained from point #2.

4. After writing the On Being Human post, I've rekindled my interest with human evolution. I've watched Nova's "Becoming Human" series and other videos like this one. I've been thinking about my own spiritual conviction (yes conviction to point of certainty) that we're a part of something greater (I'll write a post later – if anyone's interested – on how I evolution ≠ atheism). This has reminded me how the Dahlia Lama ask his monks to keep up-to-speed with neuropsychological findings in order to better crystalize their philosophy of living life as humans on earth ... in the moment (see Destructive Emotions for reference). Not that I think Buddhism contains all the answers (I really love all religions), but I appreciate how the Dahlia Lama's understanding of God (or infinite intelligence or whatever you want to call it) is not mutually exclusive from the realities of the universe.

Trust me, these tangents are going somewhere.

5. Amy and I both went for runs today. I know ... Awesome. Through our 12 years together, we've learned lots about each other and emotions in general. For example, after taking the advice of a friend, we've experienced a world of happiness since refusing to talk about family or money issues after 8pm (because that's when you're running on tired emotions, as our friend Robyn says, and not real emotions). Or, in other instances when we want to rip each other's heads off, we'll insist we each run before engaging any further. And every time we come back from our runs, we feel amazing and are literally baffled at what we were arguing about in the first place. I hadn't really thought about why that works ... it just worked.

6. I read this article, which explains how archeologists uncovered evidence indicating that early humans cared for sickly children over 400,000 years ago. This is a big deal because it totally flies in the face of the "survival of the fittest" attitude many people believe to be true of our nature.

So, to re-cap ... I've been thinking lots about (1) mortality and why we're here and who we are; (2) how there are infinite universes of reality at infinitely different levels, which means there's more to the wholeness of reality than what we perceive; (3) how naturally inclined we are to help when help is needed, and how good it feels when we do help; (4) how who we are isn't as much about our British or Chinese or Roman or whatever culture, but the result of millions of years of trial and error and development; (5) how Amy and I both went for runs today and felt great afterwards and had great days as a result (thanks Wayne & Jane for making that happen today), and (6) how there's evidence to suggest that early humans were compassionate – not ruthless – with their weaker members.

Okay, so here's the connect. Last night I watched the video-talk below, which I had been meaning to watch for a while, but I'm glad I hadn't until now. (NOTE: you have to watch it if you want any of my conclusions below to make sense):



As I watched it – thinking about everything I mentioned above – I couldn't help but imagine our family living 70,000 years ago, with Amy carrying Gabrielle, and myself with one of the boys on my back, with uncles, aunts, cousins, grandparents, in-laws, great aunts, great-uncles, and everyone you knew and cared about (which wouldn't be many people – unlike today) ... running and running and running!  Running as a clan. Running as an entity. Running to stay alive by "distance running" the game to exhaustion. Always helping one another. Always working together – no matter what. And feeling great (i.e. human) because that's how we came to be, and that's what we were meant to do.

So what's the point of this post?  Well, I'm not suggesting that running will make everything better. I'm also not suggesting that we need to help people in order to feel human. I guess what I'm trying to say is that it's easy for us to miss what "being human" is all about in this industrial/digital age, it's even easier to hold onto beliefs and perceptions that aren't necessarily realities, and sometimes it takes incidents like Gabrielle to remind us of who we really are, what we're meant to do ...  and what really matters.

In Memory of Kincső Kovencz

Please take a moment to say a prayer or loving thought for the Kovencz family in Budapest, Hungary, whose beautiful daughter, Kincső, passed just recently. Kincső was another I-Cell angel who, I'm sure, touched the hearts and spirits of everyone she met in her short little life.

Our thoughts and prayers are with you Linda, and your family.

Day +48 ~ Coronavirus

A quick update:

Gabrielle's lungs are still wheezy and her cough is not letting up. A test came back indicating that she still has the coronavirus, which explains why things haven't changed. While we're partially relieved because we know the persisting symptoms aren't indicative of anything more complicated and permanent, we're preparing ourselves for another month in the hospital as it'll likely take some time for her immune system to build itself up enough to kick this.

She's receiving physiotherapy twice daily to open up her airways and help clear things up. She's also receiving saline, steroid, and ventalin nebulizers with follow-up suctions to help her breathing as well. Yesterday we took her down for an x-ray. To the right is a picture of super nurse Hailey helping her get set up for the x-ray, with a second picture below showing her in action. We'll be getting the results back today. Just another day in the life.

On the upside, we got a new room that's twice the size with its own bathroom. Not having to move furniture around for the switch between night and day is nice, and having a bed (instead of a cot) is a nice plus too. The biggest thing is the added space. After a month, the last room was starting to feel like a jail cell, and this one is large enough to hold more than 2 adults comfortably. Simple pleasures.

Why I Chose You Mommy

Mommy,

I think by now you know that I'm not a random accident, and you're not my Mommy randomly.

I think by now you know that you were meant to be my Mommy from the day you were born.

I think by now you know that I wouldn't be alive right now if it wasn't for you (and not because you're my Mommy and you made me, but because you felt that something wasn't right the day I was born and went to the hospital, even though I wasn't supposed to arrive for 10 more days, and even though there was no "good" reason for you to go).

You're the best Mommy in the whole world, and - even though this is a day late after Mother's Day - here are my Top 10 reasons I chose you:

10. You're so strong and pretty.

9. You always think about me and my brothers before anyone else, or anything else (and remind Daddy to do the same).

8. You have the best smile.

7. I knew you would be able to grow with me and handle all the challenges I bring with style and grace.

6. Wherever you take me, you make it feel like home.

5. You always hold my hand and look me in the eyes and tell me everything's going to be okay, no matter what's happening to me and how tough it is.

4. I knew you had a big enough heart to fill me and my brothers up with love and goodness each and every day, even at bath & bedtime through this transplant.

3. You give the best cuddles. 

2. You always make me feel like I'm the most important person in the whole wide world, even though you love me just the same as my brothers.

1. You always call me an angel, but really - without knowing it - you're the most beautiful and loving angel a little girl like me could ever ask for in a Mommy.

Day + I've-lost-track

Today is day + 43 and Gabrielle's counts are great.  In fact, if we weren't faced with her respiratory issues right now I am confident that we would be getting discharged very soon.  Gabrielle is having good and bad days and is getting help twice a day from the physiotherapists who are helping Gabrielle get rid of all the mucus in her lungs by suctioning, and repositioning to produce coughing.  My little girl is working very hard to breathe at certain points in the day and is getting very tired.   She was so tired yesterday she could barely muster a cough.  All of us, including James and Michael, are learning big lessons about patience and it is very difficult to see my Gabrielle like this.

We too are getting tired.  Too tired to even write much most nights when I get home.  The hospital is so busy and when I get home I try to give what energy I have left to my boys.  To all those who have called and emailed... thank you.  I really appreciate you 'sticking your nose in' and checking in with Regan and I.  The support is very much needed.  I am so glad we have this blog so that we can at least keep you up to date on Gabrielle's progress.

On a very exciting note:  we got the results from her chimerism test (testing the DNA in her periphery blood) and it showed that Gabrielle is 86.5% engrafted with donor cells!   Yay Gabrielle!!!

We will keep you all posted on her progress.

Love to you all,
Amy

Working Through Transplant

Sometimes it's just easier to show.



* Song is "Reaching Out" by German Error Message

Laughter #4

Day +38, De-Sats

As much as you try not to think it, some days feels like you're in a Party of Five season when the producers are scrambling for ratings and demanding the writers stir things up. Other times things seem  manageable, like they're going to get better.

Reality: Every day there's a pit in your stomach; every day you fool people.

Here's the update:

Gabrielle's little lungs are having a tough time with things right now. This past December a typical (and rather innocuous) cold ran through our house. Amy, Jimmy, Mickey, and I kicked it in less than a week's time. For Gabrielle it took a month. Then there was the February respiratory scare.

Recently we learned that a portion of her right lung collapsed when she had her line put in.  So, when she got the corona virus on Day +15, not only does her I-Cell predisposition make healing from respiratory ills difficult, especially when she doesn't have an immune system (i.e. chemotherapy/transplant), but the semi-collapsed lung is adding to the problems.

So today the team is quite concerned with her breathing. She's really struggling and working her whole body to get the air she needs. There's a lot of fluid in her lungs and airways. At last word they're treating her like a patient with an asthma attack (i.e. just can't get the oxygen into the blood no matter how hard the lungs work). Things will get better, then worse, then better ... but her lungs are quite full and weasy.

To help you understand what the videos below, we're talking about her oxygen saturation levels. Almost all of us have our oxygen levels at 100%, and they'll dip as low as 94-95% when we sleep (desaturation, or "de-sat").  While the dipping is normal (and the machines make it seem 10-times worse than it really is), the concern is there and real.