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!!!

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... 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.