Heads Up, Team Superman!

Please mark your calendars...

...to join Team Superman in the fourth annual
Childhood Brain Tumor Foundation Superheroes 5K Walk/Run*

Sunday, October 3
Meadowbrook Park/Candy Cane City
Chevy Chase, Maryland*

*This year, the race has a new name and a new location,
but it's still for the same important cause:
to fund children's brain tumor research.

Look for our e-mails about online registration and fundraising.
Please forward this to anyone who might be interested.
Thank you for supporting our cause!

Join us on Sept. 13 - Walk-Ins Welcome!

Be a part of Team Superman on Sunday, Sept. 13 at the Childhood Brain Tumor Foundation "Stride for Life" 5K Walk/Run and Kids Fun Run!The 5K starts at 9 a.m. Check-in starts at 7:30.

The address is: 1400 Lake Fairfax Drive, Reston, about seven miles west of Tyson’s Corner.Directions:From 270 - Take Beltway to VA-267 W - Dulles Toll Rd. After about 1.7 miles merge onto LEESBURG PIKE / VA-7 W via EXIT 16 toward LEESBURG. Travel on Rt. 7 for about five miles and turn left on Barron Cameron Road. At the second light turn left onto Lake Fairfax Drive. This road will lead you into the park. Look for signs leading to event site.

Park website: http://www.fairfaxcounty.gov/parks/lakefairfax/lkffxdirections.htm

Matthew Grossman, College Freshman

Last week, our family had an emotionally intense experience of the positive variety for once.

Like so many of our friends, we packed up the car with all manner of teen necessities, and drove many hours from home to deliver a child to college. But Matthew's route to college was, of course, anything but ordinary - and we were acutely aware of that.

For two days before school started, we had medical appointments in New Hampshire and Vermont, setting up a medical safety net, so that Matthew will hopefully have support nearby, in case he needs it. Around those visits, we explored Hanover and Brattleboro, and visited various local landmarks like the Cabot cheese creamery and the King Arthur Flour Factory Store. We had a lot of fun.

Our last night together in the hotel, Matthew sat on the bed and played his guitar. I asked him to play "Wonder Wall," by Oasis, a song he had sung many times in the hospital. The lyrics of that song always get to me:

"And all the roads we have to walk are winding

And all the lights that lead us there are blinding

There are many things that I

would like to say to you but I don't know how

Because maybe, you're gonna be the one that saves me
And after all, you're my wonderwall"

Listening to him, I recalled all the times he'd sung that for the doctors, and I thought of all the doctors who'd treated Matthew over the years, who had been his "wonderwall." The next day, on the way to Landmark College, we stopped and bought a stack of postcards (Vermont apparently lends itself to scenic postcards), and Matthew signed them, and I tucked them into my purse for later.

We went through registration and move-in, transforming Matthew's tiny shoebox of a room into a homey space. The whole family chipped in, with Matthew directing. By the end, the room looked great.

From this...

To this...

By 12:30, we were done, with time to spare before lunch. So, Matthew, Jon & Danny fanned out across the lawn in front of Matthew's dorm, and started winging the Frisbee to each other, pulling other kids into the game. I sat and watched Matthew, blending in with the other college freshmen, and felt I was witnessing a miracle.

That evening, after we'd attended parent orientation sessions, and eaten two meals with Matthew in the dining hall, and said a mini goodbye, knowing we'd see him again the next day, we returned to the hotel. I pulled out the stack of postcards, addressed them to the various members of our medical team, and wrote the same note on each one: "Today, Matthew started at Landmark College in Putney, Vermont. Thank you for helping us reach this day."

It's That Time Again!

It's time for Team Superman's annual appearance in the "Stride for Life" 5k Walk/Run & Kids' Fun Run to benefit The Childhood Brain Tumor Foundation

Sunday, Sept. 13, 9 AM
1400 Lake Fairfax Drive
Lake Fairfax Park, Reston, Virginia
(close to Tyson's Corner, same location as before)

Please join our family and be a part of Team Superman this year!

For the third year in a row, we will meet at a beautiful park, on a (hopefully) sunny September Sunday, to celebrate life, support a worthwhile cause, stand with families like ours, whose lives have been changed by a childhood brain tumor, and honor those who tragically lost their struggle.

Brain tumors remain the deadliest form of childhood cancer, with 3,400 new cases diagnosed each year. More research is desperately needed to develop safer, more targeted and more effective treatments.

Since 2007, Team Superman has raised sufficient funds to support a two-year study that examines new approaches to treating recurrent mixed germ cell tumors of the brain, the very rare and difficult-to-treat diagnosis that Matthew faced. We plan to bring you a research update in the coming months.

In the meantime, please mark the morning of September 13 on your calendar and plan to join us. Whether you walk or run, it's a fun chance to exercise, see people you know, and come out for a great cause.

You may have already received a brochure/registration form in the mail. If not, click on the link at the top right corner of this site to download a copy in .pdf format. Advance registration ends September 1.

We look forward to seeing you!

Jaime, Jon, Matthew & Daniel

Team Superman Flies (Walks? Runs?) Again!

Last year, as you know, our goal was to fight back against the rare, malignant form of brain tumor that attacked our son. And, with your help, that’s what we did!

We collected over 400 donations and raised more than $50,000 for germ cell tumor research. In the spring, the Childhood Brain Tumor Foundation (CBTF) issued a special call for germ cell tumor grants and is now providing major funding for a two year clinical study.

Thank you for supporting our cause and for helping us achieve our goal.

This year, we are asking only for your participation…!

This year, our goal is simply to gather together, celebrate life, and support the CBTF and other brain tumor families.

Please join our family at the 2008 CBTF Stride for Life/5K Walk/Run
Sunday September 7, 2008 at 9:00 AM
At Lake Fairfax Park, in Reston, Virginia (close to Tyson’s Corner; same location as last year, but different course)

Whether you’re a returning participant or joining us for the first time, we would love to see you!

You can register one of two ways:
1. Online at http://www.active.com/page/Event_Details.htm?event_id=1599209&assetId=30d10fa3-77b5-4ba3-ab67-baa3e576ede5

2. Or print out the attached registration form, fill it out and mail it in.
http://www.childhoodbraintumor.org/FINAL2008_Stride-NEW_final%20Web.pdf

On the registration, be sure to note you’re on TEAM SUPERMAN – so we can include you in our team mailings and in the T-shirt count!

Advance registration closes September 1.
If you have any questions, drop me an email.

Hope to see you there!

Jaime, Jon, Matthew & Daniel

Team Superman Soars!

“Team Superman” made a dramatic appearance at the Childhood Brain Tumor Foundation (CBTF) 5K on Sunday, September 30. Our team numbered more than 150 and accounted for approximately half of the participants at the event. Moreover, we were highly visible in our brightly colored Team Superman T-shirts! It was a phenomenal day -- the weather was perfect, the trail through the woods was serene and beautiful, and we were incredibly grateful to be together. Special thanks to those of you who got up early on a Sunday morning to join us. Additional photos may be found at: http://www.kodakgallery.com/I.jsp?c=8958q09.blh1d0yx&x=0&y=-be461s.

We thank all of you for generously supporting the cause of pediatric brain cancer and for helping us turn Team Superman into a reality. All of the money raised will be used to fund a study on germ cell tumors of the brain, Matthew's rare diagnosis. To date, we have raised over $40,000 -- more than twice our original goal! Thank you to all of you for making this possible.

With much gratitude,
Jaime, Jon, Matthew & Daniel

We're on Track...

...to meet our goal - and surpass it!

A HUGE thank you to everyone who has contributed to our campaign so far! Thanks to the generosity of so many, we whizzed past our initial goal of raising $20,000 and have set a new goal of $30,000, which will allow us to attract a stronger pool of proposals from major research institutions. If you'd like to donate, please go to our fundraising page at www.firstgiving.com/TeamSuperman.

If you are wavering about joining us for the 5K Walk/Run, there is still time to sign up. You can register in advance online at http://www.active.com/ and walk-ins will also be accepted. The event will be held at Lake Fairfax Park, Reston. I visited the park today. It's a beautiful site, about 7 miles northwest of Tysons Corner Center (see sidebar, top right, for directions). We'll be following a circular route, and many of us (myself included) will be walking, not running. So there's no excuse for not coming out and joining us! If you register by September 20, you're guaranteed a really sharp looking Team Superman T-shirt. After that, I can't make any promises, but we'll do our best.

By the way, I've just learned that September is National Childhood Cancer Awareness Month, which makes our campaign even more meaningful. The Conquer Childhood Cancer Act was introduced in both houses of Congress earlier this year with the aim of increasing federal cancer funding by $150 million over five years; however, the bill remains stalled. In the meantime, more than 12,500 children are diagnosed with cancer annually and 1/4 of them lose the fight, not to mention those whose lives are irreparably altered. Brain tumors are the deadliest form of childhood cancer; yet, according to the Children's Oncology Group, the leading consortium of childhood cancer researchers, "survival rates for Central Nervous System (CNS) tumors have not seen a dramatic change across the board in the past twenty years." In my opinion, it's a national disgrace. But this is not the time or place...

A HUGE thank you to all of you who are supporting Team Superman with your contributions and/or with your participation in our upcoming event. We are overwhelmed by all of the support we've received and deeply grateful. We look forward to seeing you on the 30th!

Team Superman Soaring High

Thanks to all of you, Team Superman is off to a super start!

As we move into September, we are already at 40% of our goal - and we are tied for first place as the most popular fundraising page on the firstgiving.com website. This is all fantastic!

There is still plenty of time to sign up for the 5K Walk/Run. The advance registration deadline is September 20. (You can still register after that, or even as as walk-in, but the fee is slightly higher.)

If you'd like to register, either email me for a brochure (jbanksresearch@comcast.net) or download it at www.childhoodbraintumor.org/events.html. When you register, be sure to indicate that you are part of Team Superman AND please drop me an email as well, so that I can keep a running list of team members.

Please contact us if you have any questions - and thank you for your support!

Here are some recent photos:

Having a Blast at Ali's 25th

Woodneck Beach, the Kids' Favorite

Back to School, 6th and 11th Grades

What's New with Us?

Announcing Team Superman

During those many long months of struggling to get even one step ahead of Matthew's brain tumor, we could only dream of a time when we, as a family, might have an opportunity to strike back against this dreaded disease. Well, we feel that time has come...

We are excited to announce that we are organizing Team Superman (for the significance of this name, check out our 2/2/06 posting) to participate in the Childhood Brain Tumor Foundation "Stride for Life 5K Walk/Run" on Sunday, September 30, in Reston, Virginia.

All proceeds raised by Team Superman will be used to fund a study on germ cell tumors of the central nervous system (Matthew's diagnosis). Research is seriously needed to fight this rare disease. One of the more horrific aspects of our ordeal was that, after Matthew failed his initial chemo protocol, there were no data to guide his treatment. Our goal is to raise sufficient funds to support one good study that will advance understanding of treatment options.

We will be sending out more info by email and mail in the next few weeks on how you can support Team Superman with your participation and/or donations. We would love to include everyone who reads our blog and might be interested in participating. If there's a chance I might not have your email and home address, please send this information to jbanksresearch@comcast.net so that I can keep you in the loop.

Thank you in advance for supporting us in this effort!!!

***************************************************************

... and a Long-Overdue Update

It's been a long while since I posted a family update. Now that we're back home and in a mostly normal routine, it's hard for me to know what and how much to post. (My thinking goes like this: If our lives are more or less similar to everyone else's lives at this point, why would anyone want to read about us?) Nevertheless, I run across a fair number of people who say to me (wistfully? reproachfully?): "You're not writing the blog anymore, and I miss it," and this gives me the encouragement to post this brief update of what's been happening in our lives over the past few months.

Family Trip to Utah

We had an awesome spring break trip to Utah for five days of skiing, followed by five days of touring the national parks.

For Matthew it was a sweet return to the sport he loves so much and a relief to find he had lost none of his skill or balance. Danny turned into a real skier on this trip, leaving me behind after the first day and heading off with Matthew & Jon for tougher trails. For the second half of the trip, we drove across much of Utah and hiked the gorgeous scenery of Capitol Reef, Bryce Canyon, and Zion National Parks. It was quite spectacular.

Matthew's Trip to Russia

Matthew had an amazing time in Moscow. He stayed with a most welcoming host family, met some fantastic people, saw many sights and took a ton of photos. His dominant impressions were 1) that Muscovites don't generally smile in public, and 2) that life in Moscow is very different from life back home. His best story involves how he and the host son, Daniel, talked their way into a disco, (despite not being old enough), using math skills to impress the bouncer into thinking they were college students. It's a lot more colorful the way Matthew tells it.

Race for Hope

The first weekend in May, our family, along with several friends, participated in the Brain Tumor Society Race for Hope 5K to support brain tumor research. This amazing event attracted more than 6,000 participants and raised over $1 million. At the check-in area we had the unexpected pleasure of running into both Matthew's neurosurgeon from Johns Hopkins and our consulting neuro-oncologist from Children's National Medical Center. As the race started, it was uplifting to see Matthew among the large group of yellow-shirted survivors surging down Pennsylvania Avenue toward the U.S. Capitol building, as well as sobering to see how many lives are affected by this devastating disease.

School Year Round-Up

Well, without mincing words, the 10th grade school year was extremely tough: Matthew spent every ounce of energy and nearly every second of free time doing homework just to keep up with the workload - and he was still going to have to attend summer school this summer and next if he was going to graduate on time with his class.

On the sidelines, Jon & I were becoming more & more convinced that something "had to give." After getting loads of valuable input from friends and professionals (and friends who are professionals!), we sat down with school personnel and came up with a proposal to extend Matthew's high school term by one semester beyond 12th grade. The proposed plan permits Matthew to remain with his class while taking a reduced schedule over the next 2 1/2 years, have breathing room over the summer, and postpone SATs/college planning for another year. We are all pleased to have arrived at this option and hope that it will make our lives considerably less stressful!

Summer Plans

Summer has gotten off to an excellent start. Matthew is concentrating on fulfilling his high school community service requirement. He attended two weeks of community service camp downtown and is now working two afternoons a week as a youth counselor at The Children's Inn, with children who are receiving treatment at the NIH. He is also practicing with the swim team, working out with a trainer, playing guitar, and catching up with friends. He turned 16 last month, but so far has not pushed too hard on the driving front!

Danny (who has sprung up like a weed and is now practically my height) has been attending a very active day camp for the past three weeks (one week left to go), where they swim twice a day, play all kinds of sports (soccer, football, ultimate frisbee, etc.), go kayaking and horseback riding, do drama and art, and come home pleasantly exhausted.

In mid-July, both boys will head off to different sleepaway camps and Jon & I will fly up to Maine for a week of biking, kayaking, and hiking. Later in the summer, when the boys come home from camp, we hope to spend a week on Cape Cod visiting Jon's mom.

Hope you are having a good summer. We'll be in touch!

Getting Involved in Advocacy

I can't believe it's been so long since my last posting. There is MUCH to report and I would like to give a more detailed update when time permits. But for now, here are the highlights:

1) Matthew continues to do extremely well with his cochlear implant. School and everyday social encounters still present lots of challenges (most of which he takes in stride), but comparatively speaking the c.i. is a vast improvement. He is hearing so much better than before the implant, it really is tantamount to having his life back again.

2) Matthew was recently thrilled to be awarded one of eight slots on an exchange program to Russia sponsored by The Jewish Federation of Greater Washington. On April 22, he will travel with seven of his schoolmates to Moscow for a one-week visit. The kids will be housed with English-speaking families, sightsee, and participate in joint programs. We are grateful that Matthew's health and hearing are well enough for him to take advantage of this wonderful opportunity,

3) On March 15, I was pleased to attend the re-introduction (the bill was unsuccessfully sponsored last year) of the Conquer Childhood Cancer Act in the House, sponsored by four Congressmen, including our own Rep. Chris Van Hollen. This bill, introduced in the Senate as well, calls for $30 million annually over a five-year period to be dedicated to childhood cancer research. At the press conference, I was approached by a reporter who later called to interview Matthew. The story went out on Maryland Newsline (here's the link: http://www.newsline.umd.edu/health/pediatriccancer031507.htm) and was picked up by the Baltimore Examiner (http://www.examiner.com/a-624248~Teen_s_cancer_battle_illustrates_need_for_funds.html).

It's almost impossible to believe , but 1 in 330 Americans develops cancer before the age of 20, and brain tumors are now the most common cause of cancer-related death in children, having surpassed childhood leukemia.

Now that Matthew is in a more stable place, we are eager to apply our talents and energies to fighting pediatric brain tumors. We are also looking for ways that we can help other families faced with this devastating diagnosis. More on this to come.

We've Got Him Back!

Matthew's cochlear implant was activated today - and it works! And he's able to hear!

Early this morning, the four of us headed up to the Johns Hopkins Listening Center. Matthew says he was nervous, but also excited, as were we all. We had waited so long for this day to arrive, it was hard to believe it was finally here.

I plan to post some links that will explain cochlear implants in more detail but, in a nutshell, the external device includes three components: the speech processor, which is connected to a cable, which is connected to a headpiece. The processor is worn over the ear, like a hearing aid. The headpiece attaches by magnet to an internal receiver implanted under the scalp. The receiver is connected to a long filament of electrodes that threads into the cochlea.

Steve, our audiologist, started off by testing the implant to be sure all 16 electrodes were in good working order. Then, he placed the processor on Matthew's ear and began activating each of the electrodes, one a time, to determine the highest volume level that felt comfortable. All Matthew could hear at this point were individual scratching sounds, but he was smiling nonetheless because, as he described, "it was incredible to hear such precise, keen, sharp sounds - exactly what you lose with a hearing loss."

Then, the moment we had all been waiting for - the microphone was turned on, we held our breath, and Steve started to speak aloud. First, Matthew's face broadened into a grin and then he laughed. "You sound like a chipmunk!" he said. Later, he amended the comparison: "You all sound like giant bugs, but understandable bugs; and understandable bugs are a lot better than non-understandable people!"

It is typical for cochlear implant users to say that, at first, everyone sounds like cartoon characters. Cochlear implants do not restore accoustic hearing; they replace it with electronic hearing. In a normal ear, millions of tiny hairs respond to vibrations of the eardrum and stimulate the auditory nerve to send signals to the brain. With a cochlear implant, sounds are coded electronically by the speech processor, then sent through the cable, through the headpiece, to the receiver under the scalp, to the electrodes inside the cochlea. These electrodes fire the auditory nerve and send messages to the brain; but a limited number of electrodes cannot capture the full range of sounds that our ears are able to perceive. Thus, c.i. hearing sounds somewhat flat and synthetic - at least until the brain learns to adapt.

Matthew says it sounds as if everyone is talking through a voice changer. "It's like nothing I've ever heard before." As he knew to expect, music sounds terrible (because the current technology is not great at converting music) but this is expected to improve as Steve introduces new programming strategies and Matthew's brain adjusts to the new stimuli. And Matthew is still able to enjoy music with his non-implanted ear. Overall, in his words, "It's awesome." In Danny's words, "It's a miracle."

Matthew has had a great early response to the device. Many c.i. users take weeks or longer to be able to hear the radio or speak on a telephone. But Matthew was able to hear both right away. As Matthew gets used to the implant, he will be able to take in a expanding range of sounds. We will be returning to see Steve again in two days, and then again in a week. At each visit, he will reprogram the processor - and Matthew's hearing experience should improve.

We asked Matthew how he wanted to celebrate this major new step. "By going to school," he answered. So we dropped both boys off at their respective schools, and Jon & I went out for a celebratory lunch. Two administrators from school called this afternoon to let me know how great Matthew was doing, and when I picked him up late this afternoon, he was in a wonderful mood. Tonight we were able to have a dinner conversation for the first time in many months. We are clearly off to a very good start - and we are so grateful.

Milestone

We're at Day 365 post-transplant. I've got no words to top that.
Instead, how about some recent pix:


Clowning around at home











Impromptu guitar lesson in Captiva, FL, over winter break

Waiting to board the flight home

Amazing article by a c.i. recipient (referring to Matthew, click here)

This morning at the computer, I discovered an email posting on one of the listserves I subscribe to - Association of Adult Musicians with Hearing Loss. It referenced an article in this morning's Providence Journal about a hearing impaired adult musician, Richard Reed, who has been able to return to music, thanks to a cochlear implant.

I was especially delighted to see the article because Richard is no stranger to us. He was introduced to Matthew several months ago and has been corresponding with him on and off, helping Matthew become comfortable with the idea of receiving an implant and also helping to shape his expectations of what c.i. assisted hearing will be like.

Although I knew a little about Richard before, reading his complete story in the ProJo was fascinating. I kept thinking, 'Wait until Matthew reads this.' Then, three quarters of the way through, I realized that Richard was alluding to Matthew in the article as his 15-year old guitar playing correspondent. How cool is that!

Check out the article (by clicking on the title above). It will give you both a good sense of what it's been like for Matthew to live with profound hearing loss over the past year and also what challenges he will face as a c.i. user going forward.

The Second Longest January Ever

We’re not superstitious, but January makes us a little jumpy. Three years ago on Superbowl Sunday, our house caught on fire during halftime. Two years ago January, Matthew began complaining of a headache that led to his diagnosis ten days later. Last year, Matthew spent all of January in the hospital, completing one stem cell transplant and starting a second one. In that same month, Jon’s dad Larry passed away.

This January, we’re in a more hopeful place – we currently stand at Day 356 post transplant, inching ever closer to the mystical one-year mark – but the days can’t pass quickly enough. We have 20 days to go before Matthew’s implant gets “activated.”

Matthew is doing ok, but it’s very rough for him to get by with practically no hearing whatsoever. He still has a small amount of hearing in the unimplanted ear; however, his implanted ear is now 100% deaf. Although we knew this would be a difficult period, it was still a shock for him to put on ear buds and hear no sound whatsoever and for us to see our child become even more impaired.

The first few days after surgery were especially difficult. Matthew was exhausted physically and emotionally. For the first 48 hours, he had to wear a funny Styrofoam contraption (like a lopsided version of an early model football helmet) and was supposed to keep his head in an elevated position. These two factors made it difficult for him to sleep comfortably. But I know his exhaustion was also due to the increased energy now required for hearing. So, the weekend was a bit tough. Here we were, worn out from the hospital experience, tending to Matthew’s physical needs (removing the bandage, dressing the incision, sticking to a medication schedule), having to expend more energy just to talk with him, trying to manage our frustration and emotional distress, trying to muster some enthusiasm for the weekend (after all, it was New Year’s Eve) and some perspective (things are going to get better, look where we were last year at this time). You get the picture…

Somehow Matthew has gathered the energy to go back to school. I don’t quite know how he’s getting by. It’s hard to imagine the strength and courage it must take at 15 to go to school every day bald, tired, and unable to hear most of what’s going on around him, yet facing his friends, his teachers, and a demanding workload.

On the home front, much of my energy is still tied up in managing Matthew’s needs – helping him organize his schoolwork (memory and organization are even bigger challenges than they were before), driving him to tutors, keeping in touch with the school, interfacing with doctors, following up with the insurance company.

And we’re facing a lot of difficult questions as parents. On one hand, we know this is the age for Matthew to start taking more responsibility for himself. On the other hand, we recognize that he is dealing with some major challenges and disabilities and has basically lost a year and a half. So how much should we intervene?

Do we tell our 15-year old when to go to bed – or allow him to stay up until midnight doing homework night after night when, in our case, there’s more at stake than his falling asleep in class the next day. There are real concerns about his immune system.

And if Matthew accidentally leaves his FM system (the lavaliere microphone his teachers wear, which transmits their voice wirelessly from the front of the classroom directly to his hearing aids) at home, do we run it over to the school because ,without it, he won’t be able to hear anything in class that day? Or do we allow him to go without it to realize the natural consequences of his actions?

On the social front, do we allow him to go on a weekend trip with a friend – or say “no” because being on the slopes is too great a risk until his hearing improves? Must we permit some risk in order for him to learn to live with his disability? To what extent should we act to protect him?

Taking a step back, it occurs to us that last January these concerns could not have been farther from our minds. So aren’t we fortunate even to be considering these questions?

This weekend, we will see a performance of “Stomp” at the National Theater. It’s a show involving percussion, movement and visual comedy, where the performers make “music” out of all kinds of common objects – brooms, trashcans, pipes, etc. No words are spoken. Should be the perfect theater outing for our hearing-challenged crew.

A Big Step

Today was cochlear implant surgery day. Jon, Matthew & I were on the road early this a.m., heading to Johns Hopkins. (Danny stayed overnight at a friend's.) There was a beautiful pink sunrise overhead, which we interpreted as a sign of good things to come.

It was a long day, but everyone from the surgeon on down was extremely kind and caring. The actual surgery lasted only about 1 1/2 hours, but there was a lot of sitting around and waiting ahead of time - and then it took a long time for Matthew to wake up from anesthesia and feel well enough to leave. By 4:00, we were in the car driving home.

The incision must completely heal over the next four weeks before the implant can be turned on. For the next month, the implanted ear will be completely deaf and Matthew will have to get by on one ear only. So, in the near term, things will be harder before they get easier.

On the ride home, Matthew was tired and, somewhat in pain, but in a very expressive and expansive mood. While Jon drove, I wrote down Matthew's thoughts. Here they are:

"I feel an excitement I didn't anticipate, boundless wonder I haven't felt before. In terms of my hearing, my story has been a closed door, unchanging. I haven't been used to looking up, being inspired. Now, I'm feeling a great feeling.

I was so scared before [the surgery]. But then, I decided: Just cut the crap. Just do it. Now I feel I can choose how I'm going to live from now on. Things are going to change for the better. I won't have to use all my energy trying to make them better.

I'm not thinking about the music right now - just feeling happy, better and ready. We have been planning this for so long. I can't even imagine how it's going to be when they turn on the implant.

I'm finally seeing new light. Now that I feel this way, there's no way it can be worse. I can mold it the way I want. For a year, I haven't had anything to work with. At least now, there's something. It may not be an actual foundation, but at least it's a great big pile of bricks that I can turn into something.

I can't wait to turn the implant on. It will be the craziest experience of my life - like being reborn. I feel we're at the start of an adventure."

One Year Later

Tonight is the first night of Chanukah, a holiday that commemorates miracles. This is a theme that is very real for us.

Today marks the one-year anniversary of entering the hospital for stem cell transplant #1. On this day, a year ago, both of our cars broke down en route to the hospital - one in the driveway, the other on the way to the hospital. On this day, we found ourselves stranded on I-95 near Elkton, Maryland, awaiting rescue, while engaging in heated cell phone discussion with the Johns Hopkins admissions office, who threatened to turn us away at the door because they wouldn't accept our insurance approval. Meanwhile, Matthew was outside spinning around on the slick pavement, inspiring the "Skating on Thin Ice" episode (blogged on 12/18/05).

One year ago, in the hospital, I remember trying valiantly to evoke some Chanukah spirit by wrapping the door to our room in shiny paper and blue & white garland. Matthew got out of bed to help me, but he was too weak and the exertion made him throw up in the hallway. Later that evening, Jon & Danny joined us. We lit an electric menorah together, sang songs, and exchanged gifts. The first night of Chanukah happened to coincide with Christmas day. Even the import of the double holiday could do little to dispel the depression that pervades the Johns Hopkins pediatric oncology unit. Despite the tree in the entrance and the special sweets in the family lounge, it was a gloomy day.

Fast forward one year later. Yesterday, Jon & I attended parent-teacher conferences for the first time in two years. We were gratified to learn that both boys are doing well in school. Big fifth grader Danny reportedly seems to be in a good place academically and socially. Matthew's ability to ease into 10th grade seems like a miracle given his missing the prior three semesters and the extent of his hearing loss. It is no less a testament to his teachers, administration, and classmates, all of whom have provided tremendous support.

Another miracle: Last evening, Matthew returned from a very special, extremely generous four-day trip to Orlando, courtesy of Chai Lifeline, a wonderful organization that supports families facing life-threatening illness. He was one of 44 kids on the trip. Last year, he was eligible to go, but too sick to travel. This year, he was able to take this much needed break (although, it should be noted, the trip has significantly set him back in school to the extent that it may require a miracle to catch up!)

Yesterday, we spent a long, exhausting day at the hospital, trudging through three appointments - pediatric oncology clinic checkup and blood draw, audiology appointment preparatory to the cochlear implant surgery now only two weeks away, and a one and one-half hour spine MRI. The MRI experience really put us over the edge - and we didn't get home until nearly 8:00 p.m. But the essential thing is that by this morning, we were able to rejoice that the test results were all normal. The way is now completely clear for cochlear implant surgery.

A short while ago, we returned home from a small, informal Friday evening Shabbat service/Chanukah celebration in which Matthew played guitar and sang harmony in a small teen combo. Given the extent of his hearing loss, it seems like a miracle that Matthew can participate in making music. This evening, we lit the first Chanukah candle and said the customary blessings. The second blessing recognizes "the sovereign of the universe, who performed miracles for our ancestors in those days at this time," and the third blesses God "who has kept us alive, sustained us, and enabled us to reach this season." Both of these certainly hit home.

So, here we are, marking a milestone. Once again, I'd like to quote the same passage I quoted last year:

Hanukkah is not just some celebration of miracles performed in the past.
Neither is it just a commemoration of righteous people who lived in the
distant past. It is a guiding light for people from all walks of life, from
all eras in time, to see through the darkness of their personal lives and to
become a part of history. It is encouragement for those who face
insurmountable odds as a result of personal history. It is a declaration
that God will perform miracles for us when we courageously stand up for
battle. It is inspiration for us to be our own Maccabees in waging our inner
battle." (Rebbe Nachman of Breslov)

In the next year, I hope we will all continue to rejoice in miracles, but what do you say we take a little break from insurmountable odds?

Giving Thanks

Matthew & I were at Johns Hopkins most of the day today for our big tri-monthly visit. As usual, we were anxious and irritable going in. It's impossible not to be. The long day was taken up with stops at imaging (brain MRI), neurology clinic (shunt resetting), and pediatric oncology clinic (blood tests and check up). Leaving the hospital, we were physically and emotionally drained. On the way home, our fellow called with the results: All of the tests look good. (Really? yes, really.) A simple phonecall. Monumental news. Huge relief. Suddenly the pouring rain and congested holiday traffic were not so much of an annoyance.

We've reached the 10-month mark now, but who's counting? Tomorrow we'll sit down with both of the moms, Jon's brother Carl & family, extended family & friends. We're setting the table and preparing the turkey. Everyone's bringing everything else. We are truly grateful to be together. We remember all too well where we were a year ago this time - just home from Boston, anxiously waiting to enter the next phase of treatment, feeling like we were dangling on the edge of a cliff. What a year it has been. How much we have to be thankful for.

Wishing a happy Thanksgiving to all!

Mondays aren't so bad anymore

How do I summarize the past couple of months? Well, it's Monday, and I don't have knots in my stomach, and we're not heading to Hopkins pediatric oncology clinic. That says a lot, right there. (By the way, we have remained at Hopkins for Matthew's care - it's a long story for another time.)

Over the past couple of months, things have been blessedly quiet in one sense (no sudden medical surprises to knock us off our feet) and happily busy in the way that many of your lives are and ours used to be. We did manage to get away on a spectacular 12-day vacation (Danny's fever be damned) to British Columbia - Whistler Resort, Pacific Rim National Park, Ucluelet, Victoria, and Vancouver city. We hiked, mountain-biked (highlight of Matthew's trip, low point of Jon's), kayaked, horsebacked, fished, zip-lined over raging river canyons, observed bald eagles, herons, sea lions, and even a lone black bear.

This was our first real vacation, without anything hanging over us, since Matthew's diagnosis in February 2005. It was gorgeous and restorative - a splurge we felt we deserved - and we had a wonderful time.

We arrived home and headed to Hopkins the next day for the monthly blood tests and the every three month (two-hour) MRI. Got the wonderful news that evening that all the tests came out clean. Two days later, Matthew returned to school, rejoining his 10th grade classmates. There wasn't a happier 10th grader on the planet. There were no happier parents on the planet.

So, here we are, seven weeks later. I can't really speak for Matthew in terms of describing what it's like for him to be back at school. I know he's thrilled to be back with his friends and back in the place he loves. I also know it's very hard for him to function with his degree of hearing loss. In school, he receives written notes and uses an FM system - a transmitter that the teacher wears around his/her neck, that transmits wirelessly to Matthew's hearing aids. This definitely helps in class when the teacher is talking (although it leads to some humorous situations, such as when Matthew steps across the hall for a bathroom break and can still hear the teacher's voice booming in his ear). However, it doesn't help with class discussion or small group work - or in the normal social interaction that takes place in the halls, the lunch room, and the classroom.

Matthew says it's a tremendous challenge to interact socially. One-on-one conversation is fairly manageable, but with a third person added to the mix, listening becomes twice as hard. With a fourth person, it becomes impossible. It's too hard to keep up with the flow of discussion; it's too hard to keep asking people to repeat themselves; it takes all the spontaneity out of interaction. The problem is that the high school/teen experience is mainly a group experience. So our highly gregarious son is largely relegated to the sidelines - forced to observe social situations, rather than participate in them.

It is for this reason that we are moving toward a cochlear implant (ci). For the past couple of months, I've been immersing myself in ci research - talking with hearing professionals, industry reps, and ci wearers. With the help of some amazingly resourceful friends, we've connected with several late-deafened musicians who are now ci wearers. These individuals have shared their personal experiences with us and helped Matthew understand what challenges he is likely to face as a ci wearer. The bottom line is that a ci is likely to improve Matthew's hearing in speech situations, but will to some degree (extent unknown) impair his ability to hear and appreciate music. Nevertheless, there are ci wearers out there who have been able to train their ear and bridge the gap, who are recording and teaching and earning their living as musicians.

This is a steep price to pay, but Matthew has accepted the reality of the situation. Even with his current hearing, he is able to hear musical pitch fairly well. In fact, he auditioned for and was accepted into Shir Madness, his school's a cappella choir (a source of incredible joy). However, he says there is no point in hearing music if he cannot interact with people the way he wants to. We support his thinking on this and are prepared to go forward with a ci. Our consultation with the Johns Hopkins team is next week - and we have a tentative surgery date set for December 20.

On other fronts: The rest of us are doing fairly well. Danny has gotten off to a great start in 5th grade. He likes his teachers and appears to be doing well. He enjoyed a great baseball season, with his team sweeping every game - until yesterday, when they lost by just one run. The soccer season (with Jon as coach) is still in full swing and going well.

The two moms are both in good health. Jon's mom is back in Baltimore now, after spending the summer on Cape Cod. My mother has a big birthday coming up - and we're honoring her with a luncheon at the end of this month.

Jon & I are still exhausted and just trying to take things one day at a time. Today is our 18th wedding anniversary. It's is a good point to reflect upon our blessings - the most important of which is that we have one another to rely upon for strength and courage and support. I can't imagine how difficult it would be to get through something like this without a supportive partner.

It also happens to be Day 266 post transplant. We count the days, we count the weeks - each one bringing us closer to the magical one-year mark when we can breathe a little easier, so the doctors tell us. It's a difficult way to live. You have to fool yourself, discipline your mind. You have to think day by day, taking one step at a time. You can't look too far down the road, can't plan too far ahead. We're doing the best we can do - trying to create a full, rich life for our family, while at the same time living in fear of what the next moment may bring.

An example that drives this home: One day on vacation, we had just ferried over to Salt Spring Island, a small picturesque island in the Gulf Island chain off the coast of Vancouver. We were sitting having a lovely lunch at a little vegetarian eatery, when suddenly Matthew got a troubled look on his face, said he felt "strange," excused himself from the table and disappeared for about 20 minutes. Jon & I sat paralyzed, watching our food grow cold. Quietly, so as not to worry Danny, he and I asked each other, "Where do you think is the nearest hospital?" "How frequently do the ferries run?" To myself, I thought, "Oh, God, here it comes - the next blow. Just when we least expected it. Just when our defenses are down." In the end, it was nothing. Matthew came back to the table. We spent the afternoon hiking around the island and foraging for blackberries. But the sense of uncertainty, the knowledge that the rug could be pulled out at any second, is always there.

It may come as no surprise to anyone that the High Holidays were particularly difficult for us this year. Jon kept thinking of his father. I kept having flashbacks of where we were exactly one year ago: Matthew standing at Rosh Hashana services one week to the day of his surgery; the mad dash up to Boston two days later to start radiation; fasting and attending services in Newton in between radiation treatments.

Speaking personally, I would have to say that my belief in a force of greater good is pretty well challenged at this point. I had always gone through life with a sense of well-being, trusting that all would turn out ok in the end. That's pretty much gone for me now. Sitting in services this year, I felt angry and abandoned. (Why should I ask for forgiveness? Shouldn't I be the one asking for an apology?) And yet...

I have never believed in a literal God, but to me God has always been synonymous with goodness. Certainly I have seen much goodness in the past year in the spirit of boundless caring and compassion that we have seen again and again in the many individuals who have reached out to us with love & support - in many cases, people we hardly know. That is certainly something to honor, admire & celebrate - and perhaps this is what will allow me to regain an overall sense of rightness with the world. Although this comes late, I want to wish all of you a happy, HEALTHY, sweet new year.

He's Home!!!

The boy is back - very tan, very happy, loads of stories. We were SO excited to see him. Couldn't do anything all day long yesterday due to the anticipation.

However, we're dealing with a little problem. Danny came down with a 103 degree fever today - and we're scheduled to leave for our long awaited family vacation in a couple of days. So, it's off to the pediatrician we go. Will catch up later.

Camp Update

Well, as the photos show, Matthew's having just a miserable time at camp......NOT!

Things started out on a less than relaxing note. Last Tuesday (Day 2 of camp), I received a call from the nurse that went like this:

Nurse: "Everything's fine and we don't want you to worry, but we're taking Matthew to the hospital."

Me: "Why?"

Nurse: "He was playing a game of 'Mercy' and we think he may have broken his finger."

Me: (Laughing) "No problem - a broken finger, we can handle ."

As it turns out, the finger was not broken, only sprained. You can see from the photo how much it seems to be restricting his activities.

However, the medical concerns last week were not entirely lighthearted. On Tuesday, in between calls from the camp nurse, I was also getting calls from Holy Cross Hospital regarding my mother, who had arrived there to receive an outpatient transfusion for her ongoing anemia and ended up being admitted for a severely slow heart rate. She was in the hospital until Friday, when they implanted a pacemaker and sent her home. She seems to be doing ok - although the fact that she's been hospitalized five times since January has us all worried.

Despite the fact that we still seem to be stuck in Hospital World (and even driving into a hospital parking lot sets my nerves on edge) , we are all doing pretty well. From the sounds of it, Matthew is having a great time at camp. (For those who don't know, Capital Camps is coed - and intelligence tells me that's a significant factor.)

Danny is out of camp now and enjoying the high life. (It's now 9:30 in the morning and young Dan is still fast asleep.) In the past week, he's gone to playdates, lunch dates, sleepovers, a baseball game, and the movies (Editorial opinion here: Pirates of the Caribbean 2 is to be avoided at all cost.) Jon flew up to Boston last weekend to spend time with Ali and Bobbie in Woods Hole. Both are doing well. Ali's raised over $2,000 for breast cancer research and is walking in the Avon Breast Cancer Walk this weekend. Go Ali!

So, life is relatively relaxing and we're enjoying this interlude. Hope you are, too.