Home in time for Mormon Prom

When Spaulding wanted Meghan to stay until the end of May, we knew that was just not an option. Prom was coming up and seeing everyone dressed up, was a high priority for us. Uncle Jeff lent Cameron his Corvette for the evening, and Meghan didn't have to ask her brother twice for a ride.

A top priority for Meghan was to visit two of her favorite people: Her counselor, Mrs Stege and her House Principal, Ms Coggins. These two wonderful ladies have supported Meghan since her re-entry into school last September. There are angels absolutely everywhere--even in school--and these are two of the best!

We said "Goodbye" to our exchange student from Korea, Fred Cho. (Yep, what a year to be an exchange student in our household! We gave Fred the opportunity, in November, to move to another family, but he chose to stick with us through all the ups and more ups!) It was wonderful to meet his family, including his little brother Alex, who wants to be an exchange student in 5 years. Fred is going home to Seoul, Korea, for the summer but he will be returning in September to Emory University in Atlanta. "Good choice Fred"--he hates the snow!

We have had such wonderful weather since we have been home. Luckily Dad opened the pool early this year, and Meghan has taken advantage of it. When it's 85 degrees outside, we do therapy in the water. Here Meghan is swimming with Dad and Mallory.

Riley came over for some more Wii challenges. I think that the game now is "Mario Cart".

Aunt Shannon hosted a family dinner in her backyard to welcome Meghan home. Meghan loves the noise and chaos of family dinner. Notice the kids all around the table: Cake must be served!

The morning of Prom: Cameron gets up at 8AM to wash the Corvette. He is still washing it at 10AM, noon, 2PM.....and no, it hasn't even come out of the garage yet! Uncle Jeff, your Corvette hasn't sparkled like this in years!

Obviously Cameron managed to clean himself up at some time during the day. Cassie, Cameron's date, had not felt well yesterday, so Cameron promised Meghan that if Cassie was too sick to go to Prom, Meghan would be his date. Sadly for Meghan, Cassie recovered and looked beautiful for the event.

Cameron with his two favorite gals! (Cassie...a warning.....like father, like son: The Kleinlein men are crazy over cars).

From Left to Right: Tom and Rachel, Cameron and Cassie, Adam and Anna, Jacob and Sosha.... all pose for photographs before heading off to a Mormon Prom.

Something is missing at this prom—and everyone will be glad it's gone. It’s prom night: girls in fancy hairdos and beautiful dresses; guys looking their best, some in tuxedos or suits. There’s music, decorations, a catered dinner, and even door prizes. But there are a few things missing from this particular prom, like crude dance moves, offensive song lyrics, girls in immodest dresses, and alcohol & drugs. The solution: put on your own prom, but with Church standards as the guide.

"Home is an invention on which no one has yet improved upon!"~Ann Douglas

Meghan's List of Priorities for being home:
1). See family
2). See friends
3). Snuggle with puppies
4). Hold a baby cousin
5). Get in the pool.
Priority #3: Snuggle With Puppies.
Bandit and Penny were quick to oblige Meghan for a cuddle--blankets and all--even though it's May and 60 degrees.
Priority # 2: See Friends.
Mallory, Riley and Jen came over to visit and they played "Just Dance" on the Wii. Meghan joined in, dancing with the right side at least. It was pretty tiring for someone who has been in the hospital since January 8th.................but oh so much fun to be with friends again.
Priority # ?: Nope, therapy is not on the list. This must be one of mine!
Twice a day, for 10 mins, at a speed of 1.3. It's a whole lot faster than she was moving 5 weeks ago. Little Penny is very curious as to what Meghan is doing. She won't get on the treadmill but she hovers, keeping a close eye on things.
Bonus Priority: Feeding Baby Carson.
Meghan loved feeding Carson but she was not used to how messy babies get. After a bite of food went in, so did Carson's fist. Meghan kept saying "Wipe his hands". Why bother? They are heading right back to the mouth.
Priority # 4: Hold a Baby Cousin.
Carson has grown so much in the 10 weeks we were gone (it must be all that rice cereal that he loves so much). Cooper, who is way too old to be held, is peeking over the back of the chair.
Priority # 5: Get in the Pool.
Meghan is doing Adaptive Learn-To-Swim with the Clarence Swim Club. Coach Jamie (left) and Coach Sarah (right) are helping Meghan swim the Breaststroke. Sarah is holding Meghan's heels, guiding them into the right position while Jamie is helping Meghan to keep her shoulders level and balanced in the water.
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Meghan jokingly said, "I must be the only kid in Clarence to go through the Learn-To-Swim program twice". Yeah Meghan, you've accomplished too much of "the only one" status.
Now the coaches are working on balance and strength to begin the freestyle stroke. Meghan progressed very quickly. Jamie said that Meghan remembered how to do the strokes, it was just getting the body to obey commands. Meghan loved being in the water again, she has missed swimming so much. It also feels so good on the heavy limbs as the water takes much of the weight away. Meghan's goal: Return to the Clarence Swim Club in September.
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The Clarence Swim Club made Meghan an honorary Lifetime Member. Thank you. This meant a lot to her as she introduces herself as a "swimmer". How grateful I am to wonderful people who offer their time and talents to help Meghan. Coach Jamie: You made Meghan's day......week...... month by being so creative with your coaching style and so quick to adapt your knowledge to her ability. Thank you.

"Til We Meet Again"...............Uhhh No, but thanks

As I was packing up the room, Barley and Kim came for one final visit. Even with me clattering all around them, Barley went to sleep on Meghan's tummy.

The staff at Spaulding had a jingle planned for Meghan's departure--led by Kim, of course. It was bittersweet for us: We are thrilled to being going home but we leave with a genuine sense of gratitude for what the therapists have done for/with Meghan. (To play, click on the arrow)

Our last day...................

After months of groaning and eye rolling when Meghan drinks her fresh juice, Meghan finally convinces our nurse, Anne, to sample it. So they toast, "To Meghan's Health" and Anne drinks.................and then groans and rolls her eyes some more. We laughed! But Anne, if you ever find yourself sick and in need of strengthening your body, think "Juice Therapy".
Our last OT therapy with Anne. She calls Meghan "My Smiley One" and she let Meghan pick her favorite activity.....spatial design for the brain.
And a last speech therapy with Becky. Meghan adores Becky: They laugh and talk together like friends. I think it's probably because they are both gentle souls and they understand each other.
Lauren "tortures" Meghan for the last time. Physical therapy is definitely the toughest for Meghan. Lauren works her until the muscles hurt. You might miss Lauren though...we're going back to Mark, the Clarence PT--he makes her laugh and then he exhausts her.
One final visit with Kim, the Child Life Specialist. On the agenda today: Nail painting and dog walking.
We began the trip with Meghan calling the local geese "Stupid Geese". Perhaps it's Karma that on the last day, we meet Mr and Mrs Goose and their goslings. (Who, according to Meghan, aren't "Stupid Geese" until they grow up.)
This photo show somewhere that Meghan hasn't been. This is my serenity walk. During all surgeries, many therapies and even during rain, I have walked this 5 mile loop around the Charles River. I have asked many questions here, and received many answers.
How could I resist this photo? I stare at this little sleeping face each and every night, and I pray that whatever is in her "highest good" will manifest.

You Know You've Been Living in Boston Too Long When....

. *The tourists ask you for directions, and you can help them!
. *You can tell the nursing staff where things are located!
. *You say "Housekeeping, can I get fresh linens" and you're
. not talking to yourself.
. *You start calling the rehab hospital "home"!
. *The produce manager at Whole Foods knows you by name.
. *Your air mattress on the floor feels like a Tempurpedic!
. *You know the stop light patterns well enough to make a run for it!
. *You eat seafood for lunch and seafood for dinner.
. *You haven't filled up your car in so long, you can't remember which
. side the gas cap is on!
. *You start pronouncing the city-- "Bawsten"
. *When you start counting, in hours, how long until you can come
. home.

Today Meghan graduated from the hallway to the treadmill. It was a big day. No seriously! Lauren has not put her on the treadmill before because she has to have confidence in Meghan's ability to be consistent with her step. Lauren is an incredible physical therapist: She can tell me specifically which muscle is not "pulling it's weight" and what exercises will challenge this particular muscle. Knowledge can be such a blessing.
Our medical team here at MGH (minus Dr Tarbell who is also a Dean at Harvard Medical School). Left to right: Dr Jones (Neurologist), Meghan, Ev (Social worker) and Dr Ebb (Oncologist). Wonderful people who have been fabulous to work with. They are the reason that Boston has the reputation as being one of the best medical cities in the world.
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We had some very good news today. Last week, Dr Tarbell thought that she saw signs of Short Term Memory damage on the CT scan, so she ordered a full MRI with contrast. Today Dr Ebb told us that he scoured the MRI looking for damage from every angle, and he could find none. He said that he thinks that Meghan's short term memory issues are from "Collateral damage" from radiation, 5 brain surgeries and meningitis, and he thinks that it is "promising" that she will heal fully. "Promising" is medically stronger than "hope". I will take it, with much gratitude.
So now the "Goodbyes" are beginning. This is Maria, our absolute favorite nurse. She loves Meghan so genuinely and sincerely. Although I somehow think that Maria has the capacity to love many people simultaneously.....she's just that kind of person.

With radiation finally finished, Meghan now has time to see a tutor. She is really enjoying using her brain again. She was able to read passages in ELA with no difficulty and I am so grateful for that! She also has time for Art with Kim-together they are creating "masterpieces." So for the first time, in a very long time, I had a little "me" time.


So I went to the beautiful Boston Temple for some peace and serenity.

While I was there, I decided to read the entire book of Job, something that I have not done before. I am fascinated with Job currently, probably because I know that when I feel my challenges are beyond my capacity, I should read about Job. By doing so, there comes this feeling, “If Job could endure and overcome, so will I.”

There was even a section where I found humor: Job 10:10 " Hast thou not poured me out as milk, and curdled me like cheese?" Maybe not as eloquent as other parts of his writing, but poignant to me! Job really might be one of the best-known Old Testament examples of perseverance. It tells of the afflictions of a good man and considers reasons for those afflictions. It really says that affliction is most likely for experience, discipline, and instruction. I think that one message is the importance of having the correct knowledge of God and His purposes. Without that Job would not have been able to endure his trials.

I am not yet able to say that I am grateful for this trial--one day I will be able to say it. But I am grateful for the guidance that I receive today that helps me to meet it............. hopefully with perseverance!

A Request for a Health Update

I apologize for not talking about Meghan's health- there's not much change from a week ago. But I have had a request for more information. So for comparison's sake, and hopefully, for future healing reference, I will attempt to cover each aspect:

EYES: Her eyes appear to be functioning well. She can read small print, and can follow a linear pattern (such as Suduko). She doesn't have to turn her neck at an odd angle to read anymore. This is an answer to prayer and we are very grateful.

FACE: Her face is more symmetrical than it has been in 4 months. She can equalize a smile, with minor effort.

LEFT ARM: Not too much improvement here. Shoulder can lift the arm to shoulder height, but no higher. Fingers don't function at all. The left hemiparesis is a little worse since the second tumor fenestration. They believe that when the tumor collapsed a second time, it released pressure from the optic nerve, and added pressure to the left motor skills.

LEFT LEG: This is improving well, but credit most likely goes to hard work on Meghan's part, according to her PT. Stabillity is improving and the left leg can lift higher and walk faster than ever before.

MEMORY: This one is the challenge. The best word to describe it is "erratic". I can't seem to make sense of it at all. She remembers odd things like eating ravioli for dinner but can't remember having her broviac removed. (This was important to her because it means that now she can swim--her earnest desire). I am hoping that being home, in her own environment, will assist this process.

HER SPIRITS: Amazing. My teacher. My role model. My hero. Always happy, always thinking of others and trying to help someone else. Not even a "glass half-full" girl--her glass is always overflowing!

Weekend with Dad

Before we are allowed an LOA (Leave of Absence), we have to do physical therapy. Here Runzen has created an obstacle course for Meghan to accomplish without her cane! She is only cane-free with a therapist for now!
It was pouring rain, so we went to the Museum of Science. We loved the lightening show..........................
................produced by the Van De Graaf generator inside the museum.
To get to the lower floor, we had to use the work-ramp. Halfway down the slope Dad gives Meghan a push and let's her roll, unattended, to the bottom. Who are bigger teasers; brothers or Dads?
Meghan wanted to do the Live Animal Exhibit She was fascinated by the American Kestrel--perhaps the smallest and most colorful raptor
Upon recommendation, we went to UFood Grille where everything is baked not fried. French Fries for only 2oo calories was a treat. Why is it that we find these places, 6 days before we leave?
Sunday morning. This is our regular nurse Anne. Anne and Meghan have an interesting relationship: Anne is always trying to get Meghan to "Talk back" or "Cause trouble". She says that she has never met anyone as mild mannered and thoughtful as Meghan. So Anne says "Cause trouble today Meghan." and Meghan replies, "Only for you Anne!."
After church, we drove out to Salem MA to visit the Salem Witch Museum which depicts the Salem Witch Trials of 1692.
We were treated to a wonderful Mother's Day dinner of Swordfish, Haddock and Crab at FINZ-a local seafood restaurant-courtesy of Oma and Opa Kleinlein. It was a superb treat. Thank you.
Have you ever pet a lobster? The maitre "D told Meghan that this one Lobster in the tank was restless, so he pulled out the Lobster and taught Meghan how to rub it's head to calm it down. It worked.................only now Meghan refused to eat fish and insisted on ravioli (fish shaped at least!)

A Husband's Tribute

Helena has been providing updates to our family blog since its inception. In tribute to her as tomorrow is Mother's Day, I wanted to express some of my own words of gratitude.

As no one can deny, our journey over the past 6 months has taken Helena and I to deep layers of despair as we faced unknowns and disappointment, but through these darker times emerged light from the one that has become our teacher and our hero. Yes, I am speaking of Meghan. But Meghan is not alone in holding this role. Helena stands by her side. In her humility and her desire to do all she could during long nights not knowing what the future may unveil, Helena stood resolute in her passion to believe and to trust. During times when I was low, she pulled me up when I felt all looked bleak. While Meghan is a hero to many, she is so because she has been blessed to have a mother who is selfless, kind, and one who I hope to be with and learn from as we continue our journey through this life.

I give thanks to mothers everywhere. Your influence on family is immense. I have had the opportunity to experience periods over the past few months of running my household without Helena. I look forward to her void at home soon being filled by her return. Her strength and the joy she brings into our home has been missed. I love her and wish her this day as I do to all mothers including my own, a Happy Mother's Day.

Below is a story captured by a dear friend that speaks to the joy I have seen emerge from the bond shared by Helena and Meghan. I hope you will enjoy it and that you too may take pause in your lives to hear the birds sing.

"Recently, Helena and Meghan ventured out from the safety of the rehab home to go to Church on a beautiful sunny day. Helena decided to take a leisurely walk with Meghan in her wheelchair and enjoy the blessings around them. The walk of gratitude began to extend beyond the road of comfort as Helena pushed Meghan up hill through six lanes of traffic in the busy city of Boston. They have been away from home for many long weeks to receive a special treatment for a brain tumor that seems to have a mind of its own. Helena just wanted to take the weekend break from rehab and the routine of hospital life to attend Church.

The trip was taking longer than expected, the day was hotter than originally felt and their drinking water had been consumed a while back. Helena’s arms and legs were beginning to really ache from pushing the wheelchair uphill and she was losing hope that their focused purpose would never come into sight. All that Helena could hear were the sounds of a busy city catering to nonstop traffic and crowds of tourists. In the midst of feeling once again that everything was beyond her control, a feeling of slight panic was beginning to take hold. In typical Meghan style, this sweet, pure soul saves the day with her amazing observations and says, “Mommy, do you hear that?”

“What, the traffic the people, my frustration?” Helena replies.

“No, the birds!” Meghan exclaims so sweetly and with such joy.

Helena pulled herself from the sinking feeling of defeat to listen for the birds. Once again, Meghan is correct. It was not an ordinary sound of birds, but choirs of birds singing like angels proclaiming the presence of hope, the pureness of life and the belief in “All is well.”

Helena smiled and laughed in awe that Meghan did it again! Her ability to live in the moment enabled her to thoroughly understand what really didn’t matter and find what did matter. The music of God’s presence being sung by the birds was worth the strenuous trip in the heat, traffic and city noise.

What would have mattered most to you? The chaos or the choir?

They arrived at Church, spent the time in prayer by giving thanks for all their blessings and happily made the trip back through a much easier, peaceful route than the trip before."

Our friend, Joyce, closes her account of this story giving thanks to mothers who play the role that loving soul’s play by bringing hope, faith and unconditional love into the lives of the “children” they are blessed to share life with. Thank you Joyce for these words and thank you Helena for being the mother of my children.

Stephan

Daddy visits Boston for the last time!

Meghan wanted to take Dad to our favorite place: Khao Sarn Thai Restaurant. Dad munched on Curry Salmon and then moved onto Mom's Thai Peanut Chicken.
Dolores: This is my Dad's idea of buying Gelato in Boston. Cheapskate! And I am holding seaweed 'cos my Mom says I need seaweed every day!
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Meghan does eat a little seaweed everyday, in a green smoothie. Why? Responding to the Soviet tragedy at Chernobyl, scientists found 2 remarkable plant medicines from seaweed: Iodine feeds and protects the thyroid gland. It is also the main natural disinfection agent in our body. (Every 15 minutes, all of our blood goes through that small organ). Alginate absorbs radiation, heavy metals, and free radicals. It binds radiation molecules to its own molecules and then secretes it from the body.
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VRE update. Meghan picked up VRE (Vancomycin-Resistant Enterococcus ) in the hospital and we were told that there was nothing that would get rid of it, only time. So I treated her with Grapefruit seed extract, Wormwood and plenty of probiotics. After running 3 cultures over 2 weeks, they officially took her off "isolation precautions" telling us that they have never seen anyone kick this bacteria while in the hospital. Thankfully, we believe that "all wholesome herbs God hath ordained for the constitution, nature, and use of man."

It's Finally Over!

Today, May 6th 2010, is a great day. The Proton treatment is finally over. No more taking a wheelchair from Spaulding to MGH in the snow (yes, we have been here that long!), the rain or the heat. No more having your face bolted to a board for 20-40 minutes, no more having your day dictated by an unpredictable, temperamental, state-of-the-art Proton cyclotron.
The only thing that we will miss at the Proton Center will be the people. Above are Meghan's radiation team, people who were upbeat, positive and cheerful every single day. From left to right: Lorraine, Mandy, (Meghan), Helen and Ron. They made this experience bearable and memorable, and I have sincere gratitude to them for that! It's not easy to keep your spirits up when you treat pediatric and adult cancer and I admire the team for always making us feel cared for and loved.
When your treatment is completed, you must ring the "lucky bell" and everyone cheers for you. Sorry for the blurry photo, I thought it was the tears in my eyes but it was actually the camera!
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We have officially agreed on a discharge day from Spaulding Rehab: Meghan is going home on May 14th. For the last 2 weeks, Spaulding and our insurance have been debating what is in Meghan's best interest. Insurance wanted us to leave on May 4th and Spaulding wanted Meghan to stay until May 25th (because of the short term memory issue). MGH had the final say as we are having one more MRI on the 7th and we need to stay for Brain Tumor Clinic next Wednesday 12th. Stephan and I have decided that MGH will be our medical center for all of Meghan's tumor medical care and we are willing to drive her here whenever it is necessary.
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MGH has restored my faith in medical staff again. This hospital is, in my opinion, one of the best in the United States (and at this point, we have worked with many). As with anything, it is not the structure but rather the people who work here. There is an attitude of reverence, appreciation, humility and mutual respect among the staff, at all levels, that is so rare. We were blessed to find MGH and credit goes to Our Father in Heaven who intentionally closed all the local doors in Buffalo and opened all the necessary doors in Boston. It is reverential when God asks for this level of trust (especially when it's not for you but for your child) but as Thomas S Monson so eloquently said, "...faith forged in the furnace of trials and tears is marked by trust and testimony."

Give Thanks

It was time to meet with Dr Tarbell to hear the results of yesterday's scan. As I was gathering necessities, I found myself asking God for the strength to handle whatever the results were. I looked down and there was a stack of DVDs on the desk
...................this is what caught my eye..................

I smiled and thought "Joyce would tell me that this is not just a coincidence" so I intentionally thought, "I do believe."

(Meghan asked what the movie was?)
Subsequently, Dr Tarbell gave us the good news:
STABLE
.............STABLE
..........................STABLE
.......................................STABLE
The tumor has been unable to rebuild itself since the 2nd fenestration. The tumor is the same size as it was on April 13th. Give Thanks! We have been given the gift of time.....time for the cells to replicate, time for the DNA to become damaged, time for the tumor to die, and time for Meghan to get stronger. But first, it is time to express sincere gratitude. Thank you!
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Side Note: I told Meghan that now we can wait patiently for the tumor to die. She said with utmost sincerity, "And when he dies, I am NOT going to his funeral!" She makes me laugh!

Today Meghan's friend Tucker went home. We have become friends with Tucker and his family. Tucker is a 13 year old boy who had a snowmobile accident on New Years Day. When Tucker came into Spaulding, he was in the same condition that Meghan was in January. They have both had to relearn the basics of breathing, swallowing, seeing and talking etc. These kids really are inspiring. Please keep Tucker in your prayers also!

Penny and Bandit "save the day"

Meghan come home quickly and reward our 2 ferocious attack dogs....they chased away the vagrants and have secured your room for you,once and for all.
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Bandit says that a Boston Lobster would be a super reward!

Tatum "The Clueless"

Meghan come home quickly........................Tatum.....nahhhhhh don't worry about this one..... once she realizes her Mom isn't here, she'll be outta here!

Fred "The Defector"

Come home quickly Meghan.....Fred wants to turn your room into an exercise/weight room. No sweating allowed Fred!