Oops, I almost forgot to mention...

People magazine includes a feature this week (almost last week) on my niece Avery and her donor, Dalton, and his amazing family. Check it out. It's the issue with Elizabeth (not so) Smart's wedding on the cover.

A mischievous elf...

Avery at Christmas, 2011.
I hijacked this picture off of my sister's ofoto account. I think it was supposed to be our Christmas card, but either I've been dropped from the mailing list or (more likely) my sister didn't have a chance to send cards. I know, she looks so grown up, doesn't she? She'll be eight in April, but like so many precocious little girls, she is often seven going on seventeen.

She had a brief overnight in the hospital just before Christmas due to an intestinal bug and some dehydration, but overall, she is doing awesome, and we don't ever take this smile for granted!!

Just a quick Avery update...

Avery turned 7 in April, and she's now on her first sports team -- the teams are all named after the major leagues, and it was a total coincidence that she ended up on the Red Sox. As one of the last kids to sign up, it was a real fluke.

Like so many families in the Northeast, we have a Red Sox/Yankees rivalry among our clan -- in fact, last year, Avery told her parents (diehard Sox fans) that she was Yankee fan -- in spite of the fact that Red Sox manager Terry Francona had paid Avery at least two personal visits while she was at Children's waiting for her transplant. She even knew Yankee Manager Joe Girardi by name.

It will be interesting to see where her loyalties lie now that she's playing for the Sox mini minors!!

(And ironically, her glove is a Rawlings Derek Jeter -- it was the only one they could get locally, in the Boston area, by the time she signed up to play)

I also asked my sister if any of the teams was named after the Yankees and she responded "Of course not! No one would let their kids play on that team here!!"

The most fun I've ever had in a roomful of Lawyers...

Sometimes it's difficult to find the right words -- or words that seem adequate to express the myriad of emotions that this experience made me feel. Two months later, I have no better words, so here goes...



As some of you know, a year ago last August my niece Avery (then five years old) received a heart transplant. More than one year later, she is a happy, energetic six-year old, and regular biopsies report zero percent rejection of her new heart. Avery was critically ill for a long time before her transplant, so our family had a lot of time to think seriously about what it would mean for Avery to get a new heart -- not just for us, but for the donor family, whomever they might be.

In August of this year, while vacationing together on Martha's Vineyard, our family was able to personally thank the family of the little boy whose heart now beats in Avery. More than just an opportunity to thank them for making the decision that saved Avery's life (and the lives of several others), it was a chance for us to learn about and celebrate the life of their oldest son, Dalton Lawyer.

Spending time with his parents and three younger brothers was at once, poignant, comfortable, and quite simply, fun. I don't have many opportunities to be around "little boy" energy, which is much different and laid back than the "little girl" energy to which I am accustomed...

From the arcade: you need MORE quarters????
To the beach: closed for E-Coli????
To shopping: where are your shoes???? and, Was that Obama???
To Texas hold 'em: so you're a 6-year old card shark???
To arts & crafts: peace, love & Beadniks!!
To words of wisdom: "I just don't get her sometimes!" (and alas, you never will, Austin!)
...I think it's safe to say a good time was had by all.

Thank you Jim, Jeri, Ty, Miles & Austin. I think of you all, and of Dalton, whom I've never met, and yet feel like I knew, more often than you might imagine.

On the one-year anniversary of Avery's new heart...

Excerpted from a letter written by Avery's mom... (I could not have said it better!)

Life, loss and new beginnings...

Hi everyone!!

A year ago today, (Aug 6) Avery received the gift that would save her life! At 2:00 am this morning we received the page we never thought would come to let us know "the perfect heart had been found!"
At 5:00 am she went into the operating room at Children's and 18 hours later at 11:30 pm she came out of the OR and into the cardiac ICU...bleeding and very very sick - to spend the following few months healing and recovering.

As you may remember - Avery was also 100% sensitized to her donor due to the 9 open heart surgeries (8 of which required CV bypass) , 4 ecmo runs and thousands of blood products in her 5 years life. This basically placed her at a VERY (the highest) risk for rejection within her first year especially.

On Monday - Avery had her 1 year biopsy and her results were 100% CLEAN !! No cellular or humoral rejection -- her heart function is perfect and for the first time in her entire life -- she has run , bounced, jumped and giggled as much as she can without turning blue...gasping for air or coughing to catch her breath.

She truly is celebrating a new "birth" (life) day and we are so incredibly fortunate for the miracles we have been blessed with!

What makes this year a DOUBLE gift for us...is something beyond anything we could hope for last year at this time.

A week from today - we will be meeting Avery's donor family for the first time. We have been fortunate to be in touch since last Thanksgiving -- having sent a letter through the New England Organ Bank.

Next week - we will meet his family. We will spend a week together...celebrating the life and getting to know more about the beautiful little boy who now "beats life" into Avery...as well as the extraordinary family who are beyond incredible to share what they have and will with us.

So - as we reflect on how fortunate we were to see Avery start the life she never had before this day last year...we are reminded intimately at what cost that came to another family and what they were able to gift to us at the most horrific time of their life.

They are and will always be our family...

(I will be joining them for part of this trip, and I am filled with gratitude for the opportunity.)

Priceless...

13 party dresses ruined with tie dye--$585.
13 tie-dyed t-shirts--$130.
One grandmother in a rented shark costume--$82...
And the local police responding to the 9-1-1 call from a
terrified 5-year old at Avery's party--PRICELESS.

So this is how it went down. First, I told my sister that I saw no reason for the girls to wear smocks to do TIE DYE. (DYE being the operative word here folks). I had done it myself and didn't make a mess, so I had every confidence that a group of 13 little girls hopped up on sugar would also be perfectly neat and tidy. -- Oh, and I wanted to dress like a hippie in honor of the craft, but my headband made me look like much more like Pocahontas than Joni Mitchell. Meanwhile, the "theme" of the party was Avery's favorite cartoon - Charlie & Lola. And Avery also likes sharks, so grandma Gigi volunteered to sport the (very warm, on a summer day) shark suit. Any other ideas we can roll into one birthday??

So first, it was introductions, pretty party dresses, and pizza. Then tie dye, very messy party dresses, and tears from one little girl who actually cared that her dress was totally trashed.

And then there was a knock at the door! The shark arrived! Five little girls screamed, four little girls cried, three little girls laughed, AND one little girl calmly retreated to the home office and called 9-1-1... The police officer was very nice. He didn't handcuff Gigi the shark and he wished Avery a very happy birthday.

Happy Birthday Avery!! This one's going to be hard to top!

Happy Birthday Cutes!!!

"A whole circle" older!

My niece Avery turns six years old today. During a recent conversation about her time in the hospital from 2008 to 2009, she commented that it was "a whole circle!"

I love the way kids -- and this one in particular -- look at life and make observations. I've done 45 circles myself, and I'm suddenly feeling dizzy!!!

What's new with Avery...

Although I am still walking around with a broken camera (my fault - I hate techie places and I'll have to go to one in order to find out if it can be saved), my sister's camera is working fine, so I thought I'd share a few recent pics of Avery. She has lost her two front teeth and will be celebrating her 6th birthday at the end of April. These are just a few of her thousands of expressions.

My favorite is the one in the bottom right corner. Love the curlers and coffee. Lerleen, is that you???

Giving thanks...

Among the many, many blessings that my family and I will give thanks for this year is my niece Avery, who has been home now for a month. She now has a new heart, and we have renewed hope for her future and endless gratitude to her donor family, for the most amazing gift our family could ever receive.

We are looking forward to a day of love, laughter, celebration and most of all, gratitude tomorrow, and I wish you all the same!!!

Here are the most recent photos of Avery, home one month (no more tubes, and two missing teeth!).

Happy thanksgiving.

A glimpse of Avery at home...

I went to visit Cutes (aka Avery) on her return home last weekend. My sister Jennifer was already there, and they were busy baking heart-shaped cupcakes when I arrived. It was absolutely fabulous to see Avery walking, eating, and asking for new "projects" to keep her busy. We did our best to keep up with her, sewing hand puppets drawing, beading and pushing her on her swing set. I also gave her charge of Max's food & treats. She is a tough taskmaster and by the end of the weekend, Max was obeying commands better for my five-year-old niece than he ever did for me. At one point she asked me why Max never smiles. I resisted telling her that she was the reason -- I explained that he smiles by wagging his tail, though I am not sure she was convinced.

As you can see from the photo (baking with Aunt Jes), she still has a tube for night feeds, (to bolster her vitamins & minerals) but during the day it is not connected and she is making up for all of the hospital limitations. Her appetite was extremely hearty while I was there, which was also a joy to see. Other than limiting her salt intake, she can eat pretty much anything she wants... and she does!

For the next several months, Cutes will be confined mostly to home, to protect her fragile immune system as she continues to recover, but home is a great place to be!!!

AVERY...HOME SWEET HOME!!!!!

She's home!!!!!

Her first words upon entering the house were "Mommy, I'm home," followed by an immediate run to the goldfish bowl, where Gigi the goldfish, and Daddy #2 (the replacement for Daddy #1) were happily swimming. "Wow, Daddy's big!" she observed. As though suspecting that something was up, she rummaged through a drawer and pulled out a pair of binoculars to get a closer look.

When I called last night, she was not taking calls, as she ran from room to room, thrilled to be home at last.

I've said this before, but words are really inadequate to express the gratitude my family and I feel for all of you who have shared your thoughts and prayers and good wishes and gifts with Avery and all of us. Thank you, from the bottom of my heart.

Courage, Brains...and HEART!

(from my sister's update...)

I'd be tender, I'd be gentle
and awful sentimental
regarding love and art
I could stay young and chipper
and I'd lock it with a zipper
If I only had a heart.... xo

Hi everyone,
Avery is doing spectacular! She is walking almost on her own, eating (she grazes all day long), weaning on her oxygen, and just looks like the Avery we remember almost a year ago - when this unbelievable journey came to a peak last November when she was admitted the day before Thanksgiving due to her human aortic valve deteriorating.
That was really the start of this extraordinary experience - having a mechanical aortic valve placed in early December followed by a bi-ventricular repair (a 14 hour bypass surgery) in mid-December, and then emergency surgery a week later (on a Sunday night in a blizzard) when the OR team was called in from home to repair her pulmonary artery which was bleeding around her heart.
After weeks of recovery - she was finally discharged home January 26, 2009 - skinny and week - but fortunate to have 2 ventricles (or so we thought).
Avery was home for 7 weeks but on March 22nd we brought her to the emergency room at around midnight for a "belly ache" and what we thought would be a stomach virus. Neither Mike nor I were overly excited about sitting in the ER for 6 hours to be told - "make sure she drinks plenty of fluids" but she had come so far and we didn't want to take ay chances - even if it meant a tired Sunday the next day.
A couple of hours later, Avery went into cardiac arrest -- her first of what would end up being 3 arrests due to coronary artery clotting, spasms and heart ischemia. Avery also suffered severe pulmonary and GI hemorrhages from damage to her lungs and CPR with extensive anticoagulation.
On June 10th she had her 3rd cardiac arrest and was placed on ECMO for the 4th time. She was officially listed on the heart transplant wait list on June 14th as a Status 1A.
On June 15th - Avery had her bi-ventricular artificial heart pumps placed and was changed temporarily to a hold -- or "Status 7" on the transplant list to allow her to recover from her VAD surgery.

On August 6th - Day # 51 on the transplant wait list, Avery received the ultimate gift that would save her life and allow her, with a beautifully healthy heart - to heal the many many parts of her body that had suffered from an extremely sick, exhausted, dreadfully damaged heart.
Avery's liver, lungs, kidneys, pancreas, stomach, bowel, skin, muscles and nerves (especially those in her legs from the ECMO cannulas) were all effected - but are ALL recovering now that she has the heart of her super hero beating life (and love) into her every second of every day!
...and because of this...and Avery's inexplicable WILL to live (as Dr. Laussen eloquently stated one grim night on ECMO) - her spirit, sheer guts, and love for life and all it hands her remains completely unscathed.
On Monday, Avery will have her 4th routine post transplant biopsy and if all goes as planned - she will be transferred to the cardiac floor (OUT OF THE ICU!!!!) sometime during next week.
She has been in the ICU 180 days (which does not include Thanksgiving, December and January)
As I write this - Avery is sleeping peacefully arms above her head, her covers kicked off...as she rests up to welcome another tomorrow. Her DVD player is at the end of Polar Express which is one of her favorite night time movies (year round)...which seems perfectly appropriate for how Avery faces life...
Believing!
xo
Cheryl and Mike

The best of times...

(l. to r.) Cheryl, me, Jennifer, and (seated) mom.

My sister Cheryl (Avery's mom), invited us to a fundraising dinner in Boston last week, to benefit my niece's heart transplant surgeon, Dr. Francis Fynn Thompson. Dr. Fynn Thompson returns to his native Ghana at least once a year (but preferably twice) to do life-saving open heart surgeries on children there. More importantly, the team that travels there is teaching the medical staff there so that they will be able to continue his work and have a cardiac surgery program of their own in Ghana.

The evening was wonderful. We laughed and talked with Avery's doctors and nurses, ate some wonderful food, and contributed to an amazing cause.

And speaking of my niece, Avery has been up and walking - on her own - in the hospital garden. She is progressing wonderfully and we believe she is on the path to going home in the near future.

Avery - on the road to recovery...

Avery continues to have a lot of swelling and the usual balance of fluid levels after major surgery, so she will not be closed up until Wednesday. She has a very long road of recovery, but thanks to all of you and your support, wishes, prayers, she's well on her way. Here is the latest update my sister sent us Sunday night...

"No longer an only child..."
Hi everyone,
As promised - tonight's update is dedicated to Avery's donor - and in our minds and hearts - her new sibling - a child we love as if they were our own.
Yesterday - one of Avery's nurse's asked me "did you feel it"?
I asked her - "feel what?"...and she responded - "her heart - it is so strong beating inside of her"
Avery's heart is literally covered only by a thin bandage made out of plastic - so you can literally gently place your hand over it and feel her new heart "jump up and hit the palm of your hand" with each beat.
At first I thought - I have no intentions of putting my hand there -- but being the mom and insanely curious nurse that I am -- I did.
It was overwhelming on every level!
I could not help but think of the parents of Avery's donor - some how wishing I could hold their hand there too - so they could feel the life of their child inside of Avery.
We hope that one day - God willing - if the donor family wants to - that we are able to meet them...and even more so...that they are able to meet Avery and know her story! They will forever be part of our family.
It is inexplicable to even imagine what they have experienced and the void that losing their child will leave in their lives.
We pray that God gives them strength and that they somehow find peace in knowing what they and their child have done for Avery and our family.
The following is a song that my dear friend Julie heard the morning of Avery's transplant. I had never heard of it - so I looked up the lyrics.
I cannot think of words that could better capture what "We Wish" for Avery and her donor.

written by: Jeffrey Steele and Steve Robson
recorded by: Rascal Flatts

"My Wish"
I hope the days come easy and the moments pass slow,
And each road leads you where you want to go,
And if you're faced with a choice, and you have to choose,
I hope you choose the one that means the most to you.
And if one door opens to another door closed,
I hope you keep on walking until you find the window,
If it's cold outside, show the world the warmth of your smile
But more than anything
My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
and you never need to carry more than you can hold,
And while you're out there getting where you're getting to,
I hope you know somebody loves you, and wants the same things too,
I hope you never look back, but you never forget,
All the ones who love you, in the place you left,
I hope you always forgive, and you never regret,
And you help somebody every chance you get,
Oh, you find God's grace, in every mistake,
And you always give more than you take.
More than anything
This is my wish...
~Cheryl and Mike xo

Avery will get a new heart - TODAY!

Beep... Beep... Beep!
(was the sound of the pager that alerted my sister and her husband at 2 am)...
Excerpted from Avery's carepage updates...
Good morning everyone! Avery's heart has been found. She went down to the operating room at 5:35 a.m. and we are told she will be there for most of the day. We got the call around 2 a.m. Her transplant cardiologist Dr. Betsy Blume told Cheryl it is "the perfect heart."
Her surgeon Dr. Francis Fynn-Thompson left his vacation on the Cape and drove here to the hospital around 4 a.m.
We don't have any information on the donor or where the heart came from... and we may never know.
Please say a prayer for Avery, her donor and their family today.
We will keep you posted once we have more information.
Thanks for all of your prayers, messages and support!
Mike, Cheryl, and Avery



These are Avery's most recent photos with her parents, in the hospital garden, enjoying some watermelon. To the left of her mom is the IV pole with her meds, and in front is the Berlin heart that has been keeping her alive and allowing her to build the strength she needed to receive a new heart.

I cannot thank you all enough for sharing this journey with us. Your prayers, good wishes and messages of support have made a huge difference for all of us. I will continue to share information as I know more.

Heart strength

16 x 20, mixed media acrylic & collage on canvas

I have a number of new paintings in the works - several more in the heart series, which will continue at least until my niece gets her transplant*, and a new series of 4(or 5) for an upcoming local show with a new group of artists that I have joined. I will be providing more info as the date gets closer and when the official logo for our group has been approved.

*FYI, Avery is doing very well with her Berlin heart, eating, drinking, making crafts and even taking trips out to the hospital garden during the day.
I am also on the verge of meeting with one of my co-conspirators in art to discuss some workshops that we would like to offer, so teaching will be back on the table very soon.

I would tell you more, but so many details are still up in the air.

Tomorrow I will share some photos from a weekend luncheon and artist's date that I attended. It was so great to hang with a group of "art girls" for an afternoon.

Art therapy?

As some of you know, my sister Jes and I visited my niece (and sister, and brother in law) in Children's Hospital last weekend. As always, it is soooo good to see Avery when she is awake and alert and on the road to receiving the ultimate gift. Not to mention how good it is to be able to take my sister out for just a little while to give her some much-needed respite from the daily stress of caring for (and worrying about) Cutes.

During the visit, we spent a good deal of time in Avery's room, and I had time to take in all of the wonderful cards, letters and works of art created by her classmates and friends. Her walls and windows are a celebration of hope and color and creativity, and well, in the middle of it all... one big, black sorta scary painting of a shark.

During this visit, I also happened to be reading this book, which is a fictional novel based on the very real shootings by two students at Columbine High School in the 90s. So I look at the shark painting, for probably the fifth time that day, and I say to my sister Jesse, (somewhat jokingly), "they'd better keep an eye on this kid when they get older," and my sister responds, with a smirk "um, that would be YOUR NIECE!"

So, as you can see from this painting, which I was allowed to take with me, and which I now have hanging in my office to intimidate my colleagues, Cutes is definitely expressing her frustrations about having spent the better part of 2009 in a hospital bed.

Visualize world peace...

Just a little Photoshop fun. I took one of my recent paintings, and, using a series of filters (which I could never duplicate) this is what happened. Kinda far out and groovy, I think...

I have some exciting art opportunities in the works for the late summer & early fall, but details are still up in the air, so I will refrain from sharing the details for now.

Meanwhile, my niece Avery is back at Status 1A on the heart transplant list. She continues to be weaned from the ventilator and given extra high-calorie feeds to build up her strength. She is still sedated most of each day to give her body time to rest and heal from her most recent procedure (the Berlin heart). Now it's a bittersweet wait for a heart to become available.

Heal...

Heal: 12 x 36, Acrylic & mixed media on deep set canvas

This was a painting I made as a gift for the CICU at Children's Hospital when I last visited. It was late May, but it already seems like ages ago, given all that has happened since then.

I think I may have been hiding a bit behind my sister's "Avery updates" these past few days. I am reluctant to share all the thoughts and emotions that continuously run through my head and heart. It's too close, too much, too fluid. It changes so often that by the time I write something down, it's no longer quite accurate. So instead, I leave you with this confusing jumble of words.

And always, gratitude. For your friendship, thoughts and prayers for my niece and our family.

PS - Avery was awakened very briefly last night -she waved at her mom & dad, wiggled her toes and opened her eyes briefly before falling back into much-needed slumber.

Donate life...spread the word

(Maintaining a blog is so easy when you just lift your sister's entries...)Here's the latest about Cutes...

Hi everyone,
Avery had a good night and is having a good day as well.
Her Bi-VAD (Berlin Heart) is doing all the work it needs to. We started her back on some heparin last evening and will start on some aspirin and either plavix or persantine in a few days.
All of this will be to anticoagulate her blood toward preventing clot and fibrin formation in her Berlin Heart.
On occasion - (not infrequently) - the device needs to be "changed out" if clots or fibrin build up occurs. This would NOT require open heart surgery -they would only change out the "pump heads" which are all external - but they would likely do this in the OR if necessary since they removed Avery's mechanical aortic valve.
As for transplant - Avery is currently a "status 7 - inactive status" on the transplant list. This means we are in a temporary "holding pattern" for transplant in order to optimize her some more following her surgery on Monday.
This is very typical and we were told this would be the case following her surgery for a few days - a very temporary period of time.
Basically - if you are a status 1A and active - you need to be completely ready and prepared at any point a heart should become available to go to the OR. If you are not - then this delays precious time to notify other potential recipients - and this is precious time lost for all.
Avery will likely be re-activated by Friday - and she will return to an "active 1A status" -- thus -- keeping the hours" she has accrued on the list prior to going on "status 7/inactive" - so she starts reaccumulating time immediately.
As for how she is doing today -
She is much less "puffy" then she has been since her surgery on Monday - so the diuretics are doing a great job helping her kidneys to get rid of the extra fluid.
We are weaning slowly on her ventilator - which is great - given all the fluid she still has to lose.
Her nurse placed a feeding tube. We will probably start a very small amount of pedialyte to get her belly used to it and then start ramping up the high test calories in a few days.
Finally - we are planning to do a brief "wake up" test today to briefly see how she responds to us.
Dr. Fynn Thompson is very happy with how she has and continues to do.
As we continue on this journey - and hope, pray...and wait...we would like to ask all of you to spread the word about organ donation.
It is something that is rarely talked about - understandibly - not exactly "life of the party chit chat."
But organ donation is an underappreciated issue - especially when it comes to children donating to children! - despite hundreds of kids (and thousands of adults) whose lives can be saved each day.
If we have learned nothing else over these past 5+ years it is that life takes unexpected turns - and despite our best efforts - we have little control over much of it.
The best we can do - is take what we are faced with and do the best we can - hoping that even in the worst of times - we can somehow make a positive difference.
We will never understand why Avery has had to endure so much - but have full faith she will continue to inspire and teach us for many, many years and get back to her "childhood" - because mom and dad need a break before the adolescent years!
We also do not subscribe to the "every thing happens for a reason" gibberish - because no explanation in the world could make sense of what these kids go through.
But since we cannot change the "why's"...we can at least impact the "what and how" and all make a difference!
So today - tomorrow and whenever you have an eager ear to listen - spread the word about organ donation!
Check your drivers license, talk to your children (if they are old enough to understand

We underestimate what our kids can understand - and sometimes in a much clearer and simpler way.
You never know.... your message could save a life someday!!
xoxox
Cheryl and Mike