Day +7 ~ Update

Hard to believe we're at one week post transplant. While it's been an up and down whirlwind, Gabrielle seems to be doing well. She's had several temperature, heart rate, and blood pressure spikes which are expected, as well as nasua, blood in her diaper, and now a phlegmy throat (which might be from chemo-related mucositis), but it's reassuring to know they're not uncommon for chemo/transplant patients. Gabrielle's also had several platelet transfusions to get her counts up (to prevent internal bleeding) and bag after bag of different kinds of medicines (and flushes) are being hung and dripped into her main line.

With her literally not having an immune system (white blood cells = 0 right now, which was the goal so that her body would accept, and not attack, the new blood, or vice versa), she's in a quarantined room with special/fresh air pumped into it. Everything that enters the room gets wiped down with Vyrox (stuff that kills germs), and anyone who enters must wash really well and wear a germ-free gown. There's no washroom or sink in the room, so we're getting good at coming up with step-by-step sequences for washroom breaks, snack breaks, bottle runs, and movie runs too.

One thing I'm quite proud of is how taken all the nurses are by darling Gabrielle. It really is heart warming to see the nurses enjoy working with our little daughter as much has they do. One special nurse - and I'm totally bragging here - said she's never seen a baby with such a calm, loving, and attentive presence before. This reminds me of how Trent, another I-Cell dad from Denver who blogs about his son Carter and life as well, said, "These kids aren't I-Cell kids, they're Smile-Cell kids because when they smile they make every cell in your body smile too." I didn't doubt Trent when he told me about it for the first time last November, but it's sure incredible to see it first hand.

All for now, and I'll end with a video of Amy and a nurse giving Gabrielle a bath in the transplant room.

Happy Does Not Equal Good

In our culture, I think we have a lot wrong. We think being happy is good, and being sad is bad. It's ingrained. Like I mentioned in an earlier post, in our basic greeting to one another we expect people to say "I'm good" when we ask them how they're doing, even though that's a farce for so many reasons.

I think in our culture we wrongly typecast things into the "happy = good / sad = bad" because we can. We have running water and plumbing; various sources of power; most of us grew up with a park in front of our house and behind it (yards); we went on family trips (often in vehicles that left the ground and flew over oceans); we got to eat wonderful foods like tropical fruit even when there was snow outside; and we were able to visit doctors when we got sick, and then the pharmacy for medicine, and (worst case scenario) the hospital until we got better.

Our culture possesses so many magic bullets that we've understandably created a culture of getting back to happy. Happy is normal. Happy is good. Sad is bad.

I think Amy and I have shared at some point how there's no cure for Gabrielle. She likely won't make it past 6 years. 8 if we're lucky. We chose the transplant in hopes that she can live a better short life, and reach more milestones. It flipping sucks. The heartache is indescribable. But that's okay, because the situation just is. While it is sad, it's also brought us so much happiness. So while it's not good, it's definitely not bad. It just is.

I guess what I'm saying is that half of what makes this experience so difficult stems from it's rarity in our happy culture. 100 years ago, no problem: everyone knew someone who had lost a child before 5. Heck, that's why our lifespan wasn't much more than 40 years old through the ages – lots of the little'uns didn't make it past 5 years old and skewed the statistics. In our culture today, though, it's a tragedy beyond measure.

I think what so many of us in our culture don't realize is that part of being human includes hurt and pain and suffering. We embrace growth and encourage it. Yet we hide decay. While I believe in being growth-oriented, I think it's good for us to consider that we'll all return from whence we came.  It's a reality not many of us want to face, and many of us don't.

Growth and decay are both real. Neither are happy or sad. Or good or bad. They just are.

I think Eastern European music describes what I'm trying to say best, with all of its minor keys. The peoples of the vast Eastern European plains had more than their fare share of hardships through the ages, and their music expresses their acceptance and celebration of the full human spectrum. And while the minor keys may sound dark and gloomy to our Western ears, I think their beauty is achingly real ... and neither good or bad.

Day + 3

Well here we are.  The end of Day + 3 and I'm most excited to wake up and find out what her blood counts are so I can write it up on her calendar in our room.  Gabrielle had two transfusions again yesterday for platelets and hemoglobin and her WBC's and nutrophils are obviously still at 0.  She's still nauseous but still calm and amazing.  So amazing in fact that our doctor told one of the nurses how she likes to come and see Gabrielle when she's feeling stressed as she loves Gabrielle's calm energy.  

I'm at home tonight with the boys and we all miss her, and Regan at the hospital spending the night with her.  I have a pit in my stomach when I'm away from her but at the same time it's very rejuvenating to see the boys and have a good sleep in my bed.  I still can't believe that this is us, our life, and our reality.  People ask me lots "How do you do it?"  A question I don't know how to answer because I'm sure if the tides were turned they'd find a way to do it too.  Just like we have.  

I think often of the people in Japan.  It brings back so many memories of the Tsunami in Thailand back in 2005 and I remember being so shaken and awestruck by several things.  1.  Mother nature is powerful, unpredictable, and capable of so much destruction, and 2.  Life can change in a split second.  My heart goes out to them.

I try to remember to enjoy every second of life.  I make sure to always hug and kiss the people I love and I'm never shy with the words ' I love you'.  We are so lucky to have so many great things in our lives.  I am grateful for so much.  Don't get me started:)

Life is wonderful.

Laughter ... Day Plus 2

It's been a crazy few days. And this - especially after appreciating the niceness of Asian Comedy after spending 2 years in Korea - is just soooo funny right now.

Day 0 ~ Stem Cell Transplant and Nice Chairs

At 12:20pm today Gabrielle was given a big fat syringe of someone's blood from Italy, full of stem cells that we hope will help her reach more milestones than she would otherwise with her I-Cell disease.  We're sitting in the hospital now, Amy hovering over her monitoring every tiny inch of her body, her breathing, and both of us watching the monitors for signs of oxygen levels, heart-rate, blood pressure, and all the regular vitals we've become accustomed to monitoring. What's amazing is that the types of cells Gabrielle needs should - on their own accord - find their way from her jugular vein and travel through her body until they find their home in her bone marrow, where they will (knock on wood) manufacture some cells that will store waste properly.  

You know .... the age we live in is truly incredible in that (1) Gabrielle can go through this procedure, and (2) there be so many people and medicines and technologies to help out if things go awry. Not that there aren't any guarantees, but Amy and I marvel at all the miracles modern medicine provides. 

Saying that, actually, makes me think of something that's really been bothering me lately, and I wonder how - with all these medical miracles - people can still make horrible chairs like the wooden rocking chair below. Like it doesn't even really rock, it definitely hurts your back, and it numbs your seat in less than 5 minutes, even with the help of 3 hospital pillows. It was our chair in our tiny little room for 5 nights ...

 Until we got this one:

I can't tell you how happy we were. Seriously. With a little more thought, effort, creativity, and experimentation on the part of the designer/manufacturer, a whole new world of comfort entered our lives with our new chair. It made me think of how you just don't know what the end results and benefits of extra thought, effort, creativity, and experimentation will be.

And whether the benefits are from the myriad contributions put into stem cell transplant protocols, or those leading up to the switch from making century-old chairs to comfy chairs, I believe people benefit from everyone's extra focus and attention. Some people might think, "Oh, that wooden rocking chair's fine," while someone else might think, "No, no ... we can do better."  Some people might think, "Oh, there's nothing we can do for that condition," while others will think, "No, no ... we can do better." The differences in these thoughts seem simple enough, but today we were the benefactors of the latter thoughts in both cases.

I guess what I'm saying is that when people devote more effort and focus into things, the benefits are appreciated by more than just them.  It makes me want to put more effort and focus into things. And I can't imagine how many people's extra effort and focus went into Gabrielle's stem cell transplant today.

Amazing.

Preparing for Day 0

Dear James and Michael,

One day when you are older, and able to understand, we will tell you all about this transplant that Gabrielle is going through.  We are so relieved that you are both happy at home.  You love playing all the fun games with Elena and she manages to keep you busy all day long!   When I'm not at the hospital with Gabrielle, I get to come home and be with you.  You two are the best medicine and keep me laughing and smiling, and keep us so crazy busy we have no time to be sad!

By the early morning, while we are all fast asleep, Gabrielle will have finished her last round of chemotherapy.  She is amazing and continues to teach us so many important lessons about life that I never would have otherwise learned had it not been for her.  Every day, I am thankful that we have her in our lives.

Tomorrow is a really big day for us and an even bigger day for Gabrielle.  

At 11 am tomorrow your sister will undergo a stem cell transplant.  Her little body has been undergoing all the preparatory chemotherapy that is working to completely destroy her bone marrow.  It has worked well because most of her counts are all ready down to 0.   Early tomorrow morning she will go into isolation and will stay there until her new cells start to grow and it becomes safe for her to fight off any infections from bacteria or viruses.  The next couple of weeks will be very stressful as we try to protect her body from germs and wait for her counts to come up.  

Gabrielle has re-defined for our family what the words 'strength' and 'courage' mean.  Our perspective has been completely changed and we will always have Gabrielle to thank for that.  Gabrielle has a lot of battle left to go.  Every single, itty bitty ounce of me prays that it continues to go as well as it has thus far.  

March 23rd will become Gabrielle's second birthday, the day her body is given a second chance, a new life, and we will celebrate this day in our family for the rest of our lives.  

What a lucky family we are to have her.  You two boys have the strongest sister in the world.

Love,

Mom

Super Trooper

Gabrielle's been a super trooper the past two days, fending off reactions to the cyclophosphomide and ATG that brought her temperature up to 40º and heart rate up to 240 bpm. Last night was better than the night before when Amy was up with her until 3am, then 5am, and then the whole day.  Here's a quick video of Amy and Gabrielle working through the fever.

Illusions

It's funny how we use the term disillusioned. We use it to describe someone who doesn't have a grip on reality.

Ironically, none of us want to be victims of illusions, but when we say someone's disillusioned, we're using the same prefix we use for disease. It doesn't make sense. It's nice to be at ease, but not to have a disease.

So none of us want to be disillusioned. But none of us want to victims of illusions. WTF?

I can tell you this: Gabrielle's plight has shattered a gazillion of my assumptions, changed several of my life goals, and opened my eyes to many wonderful things that were previously omnipresent but unaware to me, and my heart aches thinking that it took Gabrielle to dis-illusion me.

I don't know what the purpose of this post is. Amy and I encourage the other to post when the other is at the hospital in hopes we'll wake up to some sort of exciting news. And we love the comments and all the support. So I guess I'm talking to Amy, and relaying our conversation today about how tragically fortunate we are. I know (Amy) we would both trade all these insights in + all the money in the world for Gabrielle's health, but that ain't happening.

So here we are.

Disillusioned.

Better for it.

With hearts breaking.

Day Minus 6

Gabrielle had a really great day yesterday and enjoyed a visit with Grandma and Papa (my parents) in the afternoon.  She looked healthy, was smiling and talking away.  She began her next round of chemo medications (cyclophosphomide) and because of the possible risks with the medications we were moved upstairs to the BMT floor so that she can be monitored much more closely.  Today they will add another chemo drug (ATG) as part of the preparatory regiment for transplant.

Some 'exciting' highlights from the last 24 hours:

• Gabrielle managed to pull out her NG tube out of her nose and it happend so fast that I just stared in disbelief at her tubeless nose before frantically pushing the call button for nurse Gino to come to the rescue
• I pulled Gabrielle into my bed and snuggled all night with her
• I enjoyed every minute with Regan before we officially 'tagged' one another in 'duties'
• I was so relieved all day long that Gabrielle was feeling well and loved watching her play

Day Minus 7 ~ St. Patrick's Day

Gabrielle had her first bath since being admitted 6 days ago. Nurse Jen was awesome!



Today Jimmy and Mickey got to see their little sister, and shared their "I miss you" cards that Elena - the best nanny in the whole world - helped them make earlier in the day.

Day Minus 8

In 4 (instead of 12) doses of Busulfan (chemo) - each spread over 8 hours - Gabrielle reached the levels the doctors wanted her to get to. The doctors were quite surpised, but thought it might have to do with her cells' inability to store waste. 

Last night Gabrielle's stomach was cramping to the point of concern, and she had a series of seizures through the night that have sent some more alarm bells off. While these are relatively common symptoms, they're tough to watch her endure, especially the seizures.

Amy and I switch every day in the afternoon. One of us leaves home at 3pm and arrives by 4pm, the other leaves the hospital at 4pm to be home for 5pm. We want to be home for dinner, bath, stories, and bed for the boys.

This is a letter from Gabrielle's Grandma (my Mom), who's basking in the sun in Mexico, but probably wishing she was here:

This is my very favorite picture of Gabrielle, she looks so beautiful and peaceful.I'm thinking  and praying for her and  all of you lots. 

God Bless. 

Transplant Details

We've had lots of people ask for the details about Gabrielle's transplant, and ... well ... they're exhausting and daunting, so we usually change the subject. I'm also lazy, so - for those of you who have been asking - I took a couple of pictures of the procedure description (as outlined in the consent form) with my iPhone. It doesn't capture everything, but it does go over the basics. I don't think she's getting radiation, but we were told that because the potential complications are the same, they left them in. I've read it once, and once only. Ugh.

On Being Human

One thing Amy and I have talked lots about is how Gabrielle is teaching us to be more human. Not that we could be any more human than we already are, but I think we're experiencing more of the "human experience" through this ordeal than we ever would have otherwise. Our culture is obsessed with perfection: we work so hard to appear "in control," and be happy, and we even ask people how they're doing expecting that they say "good" or "great" or whatever.

I guess what I'm saying is that I'm learning life isn't always about being in control, or feeling happy, or "doing good." I think what I'm saying is that, as Amy and I prepare for what the future brings (and because we're acutely aware of how finite Gabrielle's future is and are learning to enjoy the ups and work through the downs because we don't want to waste much time wallowing in sorrow), we're experiencing a whole new spectrum of thoughts and feelings that have made us ... well ... more human.

I wouldn't ever wish this ordeal - or any adversity, for that matter - on anyone. It truly is a 10/10 on the suck-o-meter. But in reading everyone's wonderful comments, letters, and emails; and in receiving all the cards, gifts, and dinners (oh man, I love the dinners!); it just makes me realize how human we all are, and how wrong our culture is.  It makes me think of all the losses and heartbreaks and trials and tribulations that our prehistoric ancestors endured: living in caves, crossing oceans, settling new lands, hunting, gathering, and trying to keep one another alive. It makes me marvel at how they just had to be there for each other when things got bad, or really bad ... and how fully human they must have lived their lives.

And I think of how disconnected we all are from each other, and how our cultural values of perfection and happiness are so one-dimensional with respect to the complete human spectrum of experience. This is understandable, of course, because what I'm talking about is living through hardship and adversity, things no one wants (I don't), and our science, medicine, and technology do a good job of preventing them from occurring.

But our family's hardship - our darling Gabrielle - has helped me realize how incredibly "human" people are capable of being. And it's a pretty marvelous thing.

Day minus 12

As you know Gabrielle had her line inserted yesterday afternoon.  She did really well and is still recovering from the procedure.  She seems to be really sore and uncomfortable, but the Tylenol seems to help her.  I'm not going to talk about how my heart is breaking, how shaken I was to see her line coming out of her little body and how it signaled the 'start' of her BMT, how lonely the house feels and how hard this journey is going to be for her, us and the two boys.  I am only going to focus on the positive and all the great things that happen while at the hospital.
So I here I go:
1.  I get to have as many Starbucks coffees without feeling guilty
2.  She made it through her first major surgery and in true Gabrielle fashion, came out from the O/R alert and pulling at the tubes and wires.
3.  I get to watch TV in the room.
4.  I get to ride on top of hospital beds through the hallways
5.  I don't have to worry about the boys being sick anymore and spreading their germs to Gabrielle!
6.  I get to buy food in the cafeteria and the restaurants (although that novelty wears off really fast!).
7.  I get to spend all my time with Gabrielle
8.  She has access to the best medical care ever!
9.  I am starting to recognize so many of the doctors faces when I walk down the hallway and I know my way around the entire hospital!!!
10.  I get to alternate from hospital bed and then back to our bed at home
11.  I get to meet lots of interesting nurses, doctors, and other patients.
12.  I learn about 'perspective' every day
13.  I'm learning lots about hospitals and how they work with their Pediatricians, Fellows, Sr Residents, Jr Residents, Medical Students and Nurses.  As a result, I really want my kids to become doctors.  An amazing career!
14.  My boys get to come and visit Gabrielle at the hospital which they absolutely love doing!
15.  I have learned to appreciate every minute with my boys, even when they're whining and we're exhausted!

Tomorrow is the last day before her first day of Chemotherapy treatment which is coined Day minus 10.  Day 0 will be transplant day.  Although, I know the journey will be tough for our little Gabrielle, I have faith that she will fight her way through.

You are always on my mind Gabrielle.  I love you.

Laughter #1

I think the first video and the situation explains this laughter post. Funny how you laugh so much more through tough times ... and the Ross's LOVE to laugh:

Line In, Out of O/R

Dear Gabrielle,

We take you to the hospital tomorrow for at least 2 months, and tonight I tried singing you the song I always sang to your older brothers until they fell asleep when they were babies, and tonight, when we were lying in bed with your big brother James, I couldn't finish the song, and closed my eyes and covered my face so you and James wouldn't see my tears, and I when I opened them, you were both fast asleep. Thank you. And here's the rest of the song as I hear it in my mind whenever I sing it to you and your brothers.

Somewhere

This week has been a wonderful week at home, quietly waiting for what we've been told will be the start of two months (best case) in the hospital with Gabrielle this Friday. It's funny how you just quiet down and savor the moment. We've talked lots about other people through the ages who likely quieted down to appreciate things before pending events. Funny how you do it so naturally.

What is I-cell anyways?

Let's just say we have been learning lots and I feel like I have only scratched the surface as to it's complexities.  Before Gabrielle was born I had no idea what a storage disease was.  Now, I do and I am trying to learn as much as I can about it.  There are many different lysosomal storage diseases.  Unfortunately, I-cell is one of the nastier and more horrible diseases with no cure, and these poor children who live with this disease don't have it easy.
You see the tricky thing with this disease is that there is no way of knowing exactly how it will affect Gabrielle.  It could progress really fast and her health could deteriorate quickly and be quite devastating.  Or it could be much more mild and Gabrielle could reach some developmental milestones all on her own.  This has made the BMT decision 'impossible'.
Our hope for Gabrielle is that the stem cell transplant, which will take place at BC Children's hospital (dates have been changed again: line insertion March 11th and chemotherapy to begin March 14th) will significantly improve her quality of life.
Every bit of my heart goes out to my daughter Gabrielle and to all the babies born with this disease.  They teach us so much about life, put everything into perspective, and remind us that we are only human.

Some other words used in place of "I-cell disease" are Mucolipidosis II, or ML II.

The first clip is done by another ML II family who have twin boys with the disease.  Thank you Mercedes for sharing your experiences with others in hopes of bringing awareness and educating others about the disease our children have.
The second clip is one of the first clips I ever saw teaching me about ML II.  It is short and simple and makes it really easy to understand.