Payback can be fun!

This blog has certainly served a few functions since it's inception. Currently the blog is serving to assit Meghan with memory recall. Each morning I ask her what she can remember from the prior day. Then we look at the blog (and read all the comments) and her brain is able to retrieve these memories. So forgive me if I post a few pictures--it really helps Meghan.
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As a part of Cognition Group today, the kids went to a health fair, sponsored by MGH. This booth was our favorite: The surgical team......

Having been the patient 5 times here at MGH, it was time for Meghan to actually perform the surgery. This young patient needs an appendectomy and Meghan is ready with the scalpel.

Now Meghan is removing the appendictis. Uh Meghan, shouldn't you be looking at your patient? I think you have the liver instead!

Next we moved on to the beehive to see how honey is produced.

Meghan's motto

Now onto "Healing Arts": Making patterns with paint on a coffee filter.

At Proton Beam, every Friday is "Gift Friday" and the kids get to choose a gift. Every Friday Meghan choses the same gift--a Barnes and Nobles gift certificate for books. This room is the "Super Siblings Room", so she is trying to choose something for Cameron and Brianna.

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ONLY 4 MORE TREATMENTS TO GO

We went back to our favorite Thai restaurant for dinner, and then to the Ronald McDonald House for another game of Phase 10. For the 3rd night in a row, Meghan was the champion. Grandad, the analytical, card counting, and strategic gamer, rarely experiences defeat. And yes, we played fair....no sympathy assists. Games are serious business in my family.

A dinner had been brought into the Ronald McDonald House by a group of local volunteers. The Boston community is incredibly supportive and people are constantly stopping by to serve, cook, clean or donate something. It is a surprising uplifting environment considering the emotional turmoil that most families are enduring. Trust me, we are one of the happier stories!

A Sabres fan celebrating Bruins Spirit? Hmmmmm.....

It was Bruins Spirit day at Spaulding Rehab and everyone wore gold and black (ours were dirty...honest!). They had cookie decorating in the dining hall, so Grandma was Meghan's left hand as she decorated. Interesting, they only had gold and black frosting!
Arm in arm, Grandma and Meghan walk back to Meghan's room
..................."Wait a minute! This is worse than a "kick me" sign."
One of the therapists has stuck a Bruins sign on Meghan's back.
These Bruins fans are very sneaky....................
After Proton Beam, Lorraine removed the 3 week old nylon stitches from Meghan's notorious incision. Finally, it is healing. One very large blessing and we are grateful.

My Dad got a "tip" about an excellent Italian restaurant in "Little Italy" called Strega Ristorante. It was truly authentic Italian food, with the owner and employees speaking Italian as a first language. This was Meghan's choice, and she loved it!
Such a high class establishment....they even valet-parked our wheelchair.
(No, seriously, they really did! There was no room in the restaurant, so the owner assigned a valet to watch it)

Information Overload

My parents had a special behind-the-scenes tour of the Proton Therapy Center. My Dad, before retirement, was an engineer and has a fascination with the finer details of how the cyclotron works. The staff even lent him a 200 page book on the specifics that most people don't care to understand. I am sure in the next few days, he will be teaching me!

Mum, Dad and I went to Legal Seafood for dinner. This is Stephan's favorite restaurant, so after 2 weeks of my mother cooking gourmet dishes for him and the kids (while I ate hospital food), I had to ask him what he was preparing for dinner tonight! The answer was "I grabbed a pizza on my way home".

Meghan chose to stay at Spaulding as she can't stand fish! When we returned, Meghan was ready for a game of "Phase 10". Cousin Judi: Meghan beat Grandad easily......."thrashed" Grandad might have been a more accurate description.
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Six more radiation treatments and we are done! Yipee.

It's a grand thing to be a parent of a parent--that's why we call them Grandparents.

Meghan had a four hour neuro-psychological evaluation today to get a baseline so she received no therapy today. Therefore she was not physically tired, so.........

We went to the Ronald McDonald House with Grandma and Grandad for a game of Yahtzee.

After our game, they took us to a Thai Restaurant in Brookline that was fabulous. It was so nice to not eat hospital food for a night. When we got back to Spaulding, Maria, our nurse said, "Meghan, when you are here you order broccoli and chicken with ketchup. What did you order at a Thai restaurant?" Meghan grinned and responded, "Chicken and broccoli in oyster sauce!"

“The closest to being in control we will ever be is in that moment that we realize we're not.”

No photo today...I simply forgot to take any.....
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Funny story: A while ago, I was telling someone that I used to think that I was in charge of my own destiny. I used the analogy of believing that I was the driver in a car. I then explained that it was as if I suddenly realized that my steering wheel doesn't control the direction of the car because it's not actually attached to the motor--it just "humors" me into thinking that I am in control. A little while later, I over heard Meghan telling one of our nurses, "My Mom's steering wheel isn't connected to her engine and I have had the reverse removed from my car, it only goes forward from now on!" Love it Meghan...no more going backwards from here on.

Meghan and I took Dad and Cam to "our church" which is in a converted boiler company. Realty is at a premium in Cambridge, so we meet where we can. The building was used to design industrial steel boilers, condensers and heat exchangers as far back as 1860. Most of our meetinghouses are quite modern, so this is a step into history.


After church, we went to the Bunker Hill Memorial. This is the site of the 1st major battle of the American Revolution. "Don't fire until you see the whites of their eyes" is the legendary order attributed to Colonel William Prescott to make sure that each shot would count: The Colonists were very low on gunpowder! Although the colonists lost the battle, their bravery and strong showing against the British encouraged them to fight on.While Stephan and I walked the 282 steps to the top of the monument, Cameron and Meghan decided to study up on the history of the area. Well educated youth? Or Partners in Crime? You decide.
Then a return to Meghan's room to finish our highly competitive game of "Phase 10". I am a gracious loser, so I will add that Cameron won the game. Thankfully, this photo was taken before the gloating began!

Sometimes being a brother is even better than being a superhero. ~Marc Brown

Meghan had a great day today, showing her brother the few things that she has seen in Boston. It was even better when he pushed her wheelchair recklessly, tickled her gently and called her "Granny" for her slow walk (Deservingly, he got a poke on the bum with her cane!)
We began the day at the Holocaust Memorial which features six luminous glass towers, each 54 feet high. The towers are lit internally to gleam at night. They are set on a black granite path, each one over a dark chamber which carries the name of one of the principal Nazi death camps. Smoke rises from charred embers at the bottom of these chambers.
The Granary Burial Ground is the final resting place for legendary Boston figures including Samuel Adams, Peter Faneuil, John Hancock and, as you can see above, Paul Revere.
The street performers at Faneuil Hall are quite impressive. This guy did a backflip over 5 adults from the audience!
Perhaps the highlight of the day for Meghan was when a street performer chose Cameron, randomly and against his will, from the audience.
After getting Cameron acclimated to the audience, he then announced that he should have chosen a girl--and he produced a wig to put on Cameron.
Cameron was a great sport--even though this is completely out of his comfort zone--as he listened to instructions.
Cameron assisted the street performer as he balanced and spun and juggled flowers 12 feet in the air.
We came back to Spaulding for a game of Phase 10 but soon Cameron was snoozing. He must have been exhausted trying to keep up with Meghan........I'm sure it had nothing to do with 6am seminary, school, work and texting Cassie!

As a part of therapy, Meghan is learning how to look after a dog. It's quite a challenge as one hand needs to steady the dog and the other rewards him with belly-rubs and ear-scratches. Thank goodness Barkey is a therapy dog and is therefore very patient with left hands that don''t belly-rub too well!

The highlight of the day was when Cameron and Dad arrived. Meghan has been telling everyone all week that "My big brother is coming this weekend. He adores me!" There's a lot that she wants to show him in Boston--especially the authentic Mexican food and the crazy street performers at Faneuil Hall.

Totally...Spoiled Rotten

The Williams Family treat us to the Big Apple Circus! What do you say to friends like this? Such unbelievable kindness and generosity! Thank you!
It just might be questionable as to who has enjoyed this visit more, me or Meghan? I have loved having Jill here as a companion for myself but it has also been fabulous to see Meghan have one of her own true friends here-someone who can see past the scars, baldness, memory issues and monotone speech. To Riley, Meghan is still her 7th grade friend who likes Twilight and Mad Libs.
One of our favorite performers were a pair of identical twins from China! Long Jun and Long Bing are recognized as first class acrobats throughout China. The Long Twins developed their specialties during their 6 year act in Las Vegas. Their act includes hoop diving, contortion rings, double pole climbing, and ring and hat juggling. Their signature, crowd-pleasing act is a seven-minute acrobatic barrel routine--seen here!

My personal favorite was an aerialist from Russia, Regina Dobrovitskaya, who rises through the air on shimmering ribbons.
Meghan's favorite performer was an acrobatic clown named Bello. (He was named “America’s Best Clown” by Time magazine). The playfully elegant Bello, with his gravity-defying hair, trademark tuxedo, white gloves and spats, has daredevil stunts and child-like humor. Bello is incredibly athletic and the New York Daily News proclaimed that Bello “might be the greatest athlete to ever set foot in Madison Square Garden.” Here you can see him running through the open cage, with no fear at all.
The finale was Russia’s Aniskin Troupe who catapult to the top of the tent on trampoline and soar across it on trapeze. Completely mesmerizing. What a wonderful evening. Thank you again!

Finally...We become tourists

Today we are being spoiled: The Williams took us on the Duck Boat Tour of Boston. Nick, Riley and Meghan are waiting for our tour to begin.
It was a perfect day for a road/water tour. Yes, this is an amphibious vehicle that will drive right into the Charles River.
Once on the river, the tourguide let Meghan take a turn at the wheel. She actually drove us under the bridge!
We then came back to Meghan's room where Riley painted Meghan's nails yellow to match her outfit. Then the girls had a game of Mastermind.

A Super Surprise

Today was a great day! Riley, Nick and Mrs Williams drove from Buffalo to Boston to see us. We met up with them after treatment and they took us to the California Pizza Kitchen for dinner. It was fun to listen as Riley caught Meghan up on what has been happening at school--especially Dr Makin and Mrs Burgher stories.
SENTENCE: BED PRISON
It's true, Meghan has been sentenced to Bed Prison. Spaulding is big on safety. Until Meghan masters stability and is cleared to walk alone, she is required to have an assist at all times. I am usually the assist. But last night, Meghan got out of bed at 1:45am, and walked alone, down the hallway of the hospital. When the nurse found her, she told her that she "needed to know her therapy schedule for tomorrow." So now, at night, Meghan has to have all the rails up on the bed and she has a armed bed alarm that will shriek both in the room and at the nurse's desk if Meghan gets up.
I am obviously not much of an assist as I snoozed through her entire escapade.

Our first non-family visitors

It's pretty quiet here: We just don't know anyone in town. But today we had a nice treat thanks to my friend Andrea Rhoten. Andrea's brother (second from left) is serving a mission here in Boston, and he stopped by to visit us with a group of missionaries who were spending their "day off" cheering the athletes running the Boston Marathon. It was touching that these young men would give up part of their day to visit us. Thanks guys.
From Left to Right:
Elder Buys, Elder Clements, Elder Root, Elder Graft, Elder Wright
FUNNY STORY. I can't get Meghan's brace in her shoe without damaging the shoe structure, so on Saturday, Meghan and I went looking to buy a shoe horn. We went to about 4 different stores, and no one sells them. Finally Famous Footwear gave us one of their free ones. Sunday morning, I asked Meghan if she remembered our futile hunt for a shoe horn. She said that she did so I asked her if she remembered what store it was. She admitted, "Famous Footwear!" I hollered, "You remembered!" She dryly responded, "Duh Mom, It's written on the shoe horn. There's nothing wrong with my IQ, only my memory!"
(Obviously it's my IQ that's in question!)

Happiness does not make us grateful, but gratitude will make us happy!

Today was a quiet day. Meghan and I went to church. And I studied her.
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Joyce, Meghan's holistic doctor, tells me that the highest of all emotions is joy. Joy is where Meghan lives. Each and everyday, she finds joy......in a card, in a song, in a person, in a hug. I visit joy but I don't stay there! Joyce also says that the second highest of all emotions, is gratitude. So, if I can't live in joy, then I will at least live in gratitude. So forgive my indulgence, but these are a few things that I am grateful for:
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Family....the first place you turn for support, encouragement, charity, compassion, and most of all, hope!
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Cameron and Brianna......the enduring siblings who have handled our situation with grace, maturity, compassion and trust. I love them and am so proud of how they handle themselves, how they show love, and who they are at their core.
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Spouse.....My eternal companion who is my equal partner, my confidant and my strength. I could not bear this without you by my side!
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Friends....the glue that holds together the fragmented parts. So many in this category, who have served our family again, and again and again. "Thank you" just doesn't seem sincere enough.
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My Sisters.....the women that I wouldn't survive without. They hold my hand and my heart through the really rough stuff. They hold my feet to the fire when needed. I am indebted.
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Colleagues......Stephan's co-workers at Fisher Price who individually and collectively, have taken on our cause as their own. They are more than peers, more than colleagues, they are family.
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Young friends of Meghan's..... Youth who are impressive in their loyalty, kindness, dedication and support of a friend. These girls are fabulous examples of "love one another". I am so grateful that my daughter has such incredible friends. She needs you!
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Meghan's School.......Meghan was in school for only 3 months yet her teachers, counselors and other staff have encircled her with such love , support and tenderness. Thank you.
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Strangers........Friends that I have not yet met, who have embraced Meghan and our family in their hearts with compassion and love.
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Inspirational words......When we were trying to choose between 2 atypical treatment options, we were acutely aware that our choices could bring about neurological damage that, as parents, we would have to own. A friend said to me, "Helena, you just don't have that much power!" (Did you know that I would need to face that fear, Jeff?)
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The Gospel Of Jesus Christ.......25 years of lessons and talks about not escaping earthly afflictions and problems, but carefully preparing ourselves to meet them with patience and faith. Learning how to use the power of the Atonement to bring peace into each situation.
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Doctors and Therapists......The men and women who have dedicated themselves to a specialty that blesses Meghan's life, and gives her options that were not available even a decade ago.
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Antibiotic Resistant Bacteria........An unusual one but being admitted to a hospital with a diagnosis of VRE grants you a private room on a shared-room pediatric floor.
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Unanswered Prayers........Most of my life I have believed in the power of prayer. Most of my prayers have been answered (or I have understood why they were not). It has always been easy to love and trust God: He has been good to me. In the last month, never have so many prayers gone unanswered: tumor growth, leaking CSF, spinal taps, arachnoid villi, and brain shunts. Finally I have been given the opportunity to show God that my love is unconditional; I do not have to "get what I want" to love and trust God. But I did need to prove it to myself.

A true friend reaches for your hand and touches your heart. ~Heather Pryor

Clarence Middle School was sponsoring "Going Bald For Bucks", a cancer fundraiser for Roswell Park Cancer Research Center. Teachers and Students raise money to shave their heads and/or to donate 10 inches of hair to make wigs for kids. Two of Meghan's awesome friends, Riley (left) and Mallory (right) paid a tribute to Meghan during the auction. Meghan is so very lucky to have some of the most compassionate, kind, thoughtful and dedicated friends of anyone I know: A wonderful group of girls who bless her life.
I am beginning to recognize what is missing with Meghan's memory. The memory seems to be there but she can't retrieve memories within the first 48 hours. Once the memory shifts from short term to long term, she has full access to it again. (Not an official diagnosis, just an observation). On Tuesday night, someone left this critter on Meghan' pillow. She asked us "What shall I call him?". We suggested "Name him Bill Butler after your neurosurgeon, 'cos this little guy has a lot of scars too". She laughed and agreed. Within 10 minutes, she was asking again, "What shall we call him?" This went on for 2 days. On Friday morning, she woke up, saw this critter, and without cues, said, "Hi Bill Butler".
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It is interesting that we are here: Spaulding Rehab specializes in Traumatic Brain Injury. It' s just still too soon to make any formulations about recovery, they assume that there is still inflammation in the brain, and might be for a while yet!

Have juicer....Will travel

I have a reputation, and I deserve it: The juicer comes with us wherever we go--the pediatric floor at MGH, the PICU, Spaulding Rehab, or the Ronald McDonald House. I have learned to make juice under all conditions (I used to think that I needed a decent sized kitchen!) And yes, everyone has an opinion about it--from "utterly mad" to "absolutely doing the right thing". All I know is that a human body that has been taxed as much as Meghan's has, needs as much nutrition for healing and rebuilding as I can provide. Daily fresh juice and green smoothies (thanks Bonnie!) have become a staple in our lives.
Often Proton therapy is delayed, due to the children who need anesthesia in order to lie still. So MGH provides activities to do while patients wait. Today Meghan chose to do modeling clay. She wanted to create Bandit and Penny, our dachshunds whom she misses terribly. She chose to create Bandit and so I attempted Penny.
Okay, so we didn't start of with the same amount of clay, but this is the finished product. Bandit (the black one) is pretty incredible considering Meghan created him while only using one hand--quite a challenge for the best of us!

Enemy Territory

Today we find ourselves in enemy territory.......the Bruins had stopped by to deliver an assortment of fan-paraphernalia for the kids to cheer them on during their opening playoff game. We politely accepted their gifts, until we realized who their opponents were: It was our very own Buffalo Sabres. The Sabres will be playing here at TD Garden on Monday and Wednesday. No question as to where our loyalty lies....Go Sabres!
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We had an amazing blessing today. We arrived for our Proton treatment at our scheduled time but the normally hectic waiting room was empty. We sign in with our barcode medical card and sit down. Five minutes later, a technician comes in and announces, "the cyclotron is back up, call the urgent patients!". It turns out that the machine had been down all day and the radiation team had called everyone to cancel appointments but they had "forgotten" to call us. Dr Tarbell had expressed that she didn't want Meghan to miss anymore Proton treatments as she had missed too many already. Do you believe in mere coincidences? Neither do we. We know we are being watched over!