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.

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.

Off to Camp!

At about 8:30 this morning, Matthew boarded a bus for Capital Camp. Jon & I might have looked like all the other parents waving goodbye to their kids, but I'm pretty sure that our experience was different. After all we've been through, it seemed like a miracle even to be standing in that parking lot. Maybe it felt that way for him, too. Through those long, endless hours and days in the hospital, enduring endless treatments, it never seemed we'd reach this point. Yet there he was, getting on the bus, just like he's done since he was 10. Miraculous.

Matthew's been looking forward to camp, but his excitement is mixed with trepidation. He knows it will be hard given his hearing loss. It's almost impossible for him to hear anything in a group situation - and camp is a group experience pretty much all the time. But he says he's lowered his expectations. He's not looking for the best camp experience ever; he's just happy to have some freedom and independence - and an opportunity to be with other kids.

Last week, we drove up to camp for a pre-meeting with the directors and counselors - to give them a heads-up about Matthew's needs. We walked up to the dining hall just as all of the campers were gathering to go in for lunch. All of the kids were lined up by bunk. Some of Matthew's friends saw him and ran over to greet him. Just at that point, the the song, Seasons of Love, from the musical Rent, started to play on the loudspeakers:

Five hundred twenty-five thousand six hundred minutes
How do you measure, measure a year?

If it sounds melodramatic, it was. I welled up in tears. Matthew was already caught up with his friends and too busy to notice.

Danny's in camp for one more week. So, for the first time in 18 months, I have a bit of time on my hands. I'm planning to help my mom, catch up with some of my own long delayed medical appointments, visit with friends, and get back into exercise. After this week, Danny will be home and we'll make plans together. Sounds pretty good.

I leave you with a poem I heard Garrison Keillor read several years ago on Writers Almanac. I loved it then, and it's even more meaningful now:

"The Summer-Camp Bus Pulls Away from the Curb," by Sharon Olds.

Whatever he needs, he has or doesn't
have by now.
Whatever the world is going to do to him
it has started to do. With a pencil and two
Hardy Boys and a peanut butter sandwich and
grapes he is on his way, there is nothing
more we can do for him. Whatever is
stored in his heart, he can use, now.
Whatever he has laid up in his mind
he can call on. What he does not have
he can lack. The bus gets smaller and smaller, as one
folds a flag at the end of a ceremony,
onto itself, and onto itself, until
only a heavy wedge remains.
Whatever his exuberant soul
can do for him, it is doing right now.
Whatever his arrogance can do
it is doing to him. Everything
that's been done to him, he will now do.
Everything that's been placed in him
will come out, now, the contents of a trunk
unpacked and lined up on a bunk in the underpine light.

Proud Swim Team Mom

Here are shots of Matthew swimming in today's "A" Meet. He qualified for four events: Individual Medley, Freestyle, Back, and Breast, and took one second place ribbon, two thirds, and a fourth. We did not get to see him swim, as we were attending a bar mitzvah, but we heard he did great!
The Pittsburgh trip last weekend was useful for me, although not too rewarding for Matthew. I got a LOT of information about cochlear implants, communication technology and IEPs. The best find was a device called a HATIS Silhouette which allows him to hear comfortably through a regular phone or cell phone. That discovery alone was worth the trip - and Matthew, Debbie & I had a fun time tooling around a new city.

This week, we were extremely grateful to receive good news on Matthew's bloodwork. We had a consult at Children's National Medical Center and will probably switch Matthew's care over to there. It's been an agonizing decision for us (because it's frightening to face the unknown), but we feel it may be good to have a fresh start and this seems like a good time to move our care closer to home.

We appreciate everyone who has signed up on the Lotsahelpinghands website to help us out with driving, shopping and meals. Thank you so much for making my weekday load a lot easier. The stress of everything right now is making it harder for me to organize our family - so having this support really helps.

These past few weeks have been intense with activity on various fronts - hearing, educational, and medical. We regret we haven't been very good at returning phonecalls or emails. The truth is Jon & I are feeling worn out a good deal of the time.

The only news that really counts is that Matthew continues to hold steady on the cancer front. All of his tests have been normal. We have been stretching out the Hopkins visits to every 2-3 weeks, which means less stress from going there and fewer periods of anxiety while we await test results. Matthew's looking good and feeling great. He started attending hour-long swim practices a few weeks ago and made a great showing at the first swim meet this past Saturday (placing second in freestyle and third in individual medley).

We were in Los Angeles over the Memorial Day weekend, attending the lovely wedding of Jon's cousins, Sara Klevens & Yosi Loewenbein. While there, we had an in-depth consultation with a doctor at Children's Hospital LA who is one of the leading experts in Matthew's tumor type. All in all, it was a useful consult and we appreciated the opportunity to have an extended discussion with someone so knowledgeable about this rare diagnosis. As some of you know, we have been frustrated with communications at Hopkins for a long time. Although we have been satisfied with the major medical decisions and quality of care, we have been extremely unhappy with the impersonality of care and lack of access to the senior physician. We have spent considerable time over the past weeks weighing our options and considering whether we should transfer Matthew's care to another institution. Stay tuned...

This past Monday was Matthew's 15th birthday. The poor guy spent most of the day studying. He has been working furiously over the past weeks to complete 9th grade English, history and math. Today he took a two-hour final in World History - so that's one course almost finished (still needs to complete a short paper). It's tough to be in school when it's 85 degrees outside and all of your friends are hanging out by the pool or at the mall. His motivation, discipline and persistence slogging through the schoolwork is truly admirable. His goal is to have the three courses completed by the time he goes to Capital Camps for three weeks in mid-July.

Over the past weeks, our most difficult challenge by far has been on the hearing front. Matthew's hearing has continued to decline to the point where he now has profound loss. In February he was hearing well with the smallest in-the-ear hearing aids. Today, he is wearing behind-the-ear power aids - and they can only do so much. He is able to hear ok when someone speaks one at a time, facing him, in an environment with no background noise, repeating as necessary. Even under these circumstances, it takes a lot of energy for him to hear and understand. With sensorineural hearing loss, it's more than a matter of amplifying the sound. The auditory nerve cannot discriminate between similar sounds, so words sound muffled or mangled. Matthew explains that listening takes a tremendous amount of energy; trying to participate in a conversation can leave him exhausted. We are obviously extremely concerned about what this bodes for school in the fall. So we're going through an IEP process with Montgomery County to have Matthew's educational needs assessed. He's determined to continue at his current school (JDS) and we're committed to keeping him there, but there's no question it's going to present a challenge.

The hearing loss is obviously a major curve ball - one more lesson in the category of "just when you think you know what to worry about, something else comes along..." And it's not as if we can take our eyes off the C-monster, it's just that we now have something more immediate to worry about. One really miserable aspect of the hearing issue is how it's affected Matthew's music. (As everyone knows, music is the thing that matters to him the most.) Matthew's still able to play guitar and sing. However, the ENT we've been consulting at Hopkins has warned him to stay away from loud environments since exposure to loud sound could damage his hearing further. This means Matthew's had to face the fact that he can't play any amplified music (which means not practicing with his band), can't attend concerts or class assemblies, or loud restaurants. We worry even about movie theaters. It's cruel punishment for a kid who is a natural-born extrovert, who loves a party; who, even as a baby, loved being in a crowd.

But, he is accepting things and so must we. Matthew's doing aural rehabilitation (speech reading) with a speech therapist twice a week. This weekend, he & I (and Cousin Debbie Kahn) are driving to Pittsburgh to attend the convention of the A.G. Bell Association, an organization dedicated to helping those who are deaf and hard of hearing function in the hearing world. Matthew is excited to attend the teen program. Debbie and I will attend educational sessions and visit the Exhibition where we hope to learn as much as we can about assistive technology and cochlear implants.

So, my friends, it's been a bit rough. We had all hoped that by this point in time we'd be back to a semi-normal existence, but that really hasn't been the case. Even as we keep our eye on the positives, it's hard to accept that our son has been left with a permanent disability. But it hardly seems fair for us to complain when Matthew is the one who has to live with it - and he is doing so with such splendid grace and acceptance. At the IEP screening meeting, he floored the County personnel when he described what his hearing loss feels like. To paraphrase his words: "I just have to choose what I'm going to listen to and I let the rest of it go by. I realize I just can't catch everything. And, in a way, it's good because it's made me a more reflective, introspective person." How does one respond to that?

On an ending note, I'd like to acknowledge our wonderful, generous synagogue community (Adat Shalom), which continues to respond in an incredibly generous way. One of the aspects of our life that was most wearing me out was the constant driving - to tutors, school, doctors, therapists. Recently Beth Sperber Richie posted an announcement asking for driving help - and dozens of people came forward to volunteer their services. So Matthew's been meeting a lot of new people, en route to various appointments. He's loved the social aspect - and I've been using the extra time to care for Danny and catch up at home. A sincere thank you to all who have helped!!

Yesterday, Mother's Day, was especially memorable. Danny presented me with a necklace he'd made and breakfast in bed. Matthew wrote a card that made me melt. Then, together with my mom (picked up from the rehab facility), Jon's mom, and my Aunt Edna, we all went to lunch. And, to top it all off with a surprise, my sister's baby arrived three weeks early - Miles Freilich, named for our dad. Congrats to Sara & Steve in Providence!

I haven't had much energy to blog these past few weeks because we've just been so emotionally and physically exhausted. We travel up to Hopkins every Monday for a clinic visit and bloodwork. Over the past few weeks, Matthew's also had a follow-up spinal tap and MRI. Thankfully, there have been no surprises.

I hope I'll get to the point in life where I don't dread Mondays. The Hopkins visits are completely draining. It's partly the anxiety of having to undergo the medical tests and await the results. But it's also the stress of dealing with the impersonal clinic environment and the indignity of being processed like a number. We are fortunate to be under the care of some extraordinary, caring professionals. But, too often, we have the experience there of being ignored, treated rudely or, in the worst cases, severely disrespected. It usually takes us until Wednesday to get over the Monday experience. To help us cope with Mondays, I've taken to wearing an amulet - a special pair of earrings which Jon gave me years ago. They're silver and stamped with the Native American sign of a bear claw. It's an inside joke between Matthew and me. I'm the Mama Bear protecting her young. Watch out!

Our major preoccupation these past weeks has been Matthew's hearing loss. We've been active on many fronts: going back and forth to the audiologist to get the best possible hearing aids; getting second opinions about possibly ameliorative treatments and cochlear implants; starting aural rehabilitation therapy/speech reading (formerly called lipreading) and practicing these skills at home; submitting paperwork to the county school system to have Matthew's educational needs assessed (although we have every intention of remaining at JDS); researching products (like vibrating alarm clocks and amplified phones) to make Matthew's life easier; and networking with all kinds of hearing loss professionals, community folks, parents & teachers who can serve as resources for us. Special thanks to those of you who have helped us in tracking down and following up leads.

Matthew's doing an amazing job of adjusting to his disability. He's had ups and downs, but on the whole is accepting his loss and is determined to move on. He is working hard to catch up on his classes and pass 9th grade. We have appointments with three different tutors, each twice a week, plus additional visits in & out of school for tests. It's a demanding schedule and it feels like we're on the road all the time.

One of the highlights of the past few weeks for Jon and me was watching Matthew stand up and talk, by invitation, before the local Make A Wish chapter. He spoke about his experiences over the past year:

"I've overcome my fear of needles (ha!), met some famous people, and been spoiled rotten. But also I've learned an endless amount about myself; I have a much better confidence in my own strengths and I'm more grown up now. Also I have learned a ton about my family, my friends, and about human nature."

He also talked about how he decided upon his own "wish":

"My mind dipped into different visits with Red Sox players, famous musicians, and lazy days on sunny beaches... After a couple of weeks, I came to the conclusion that I did not want to meet anybody famous because I had no assurance that it would be a good experience. I didn't want to go on a trip because I figured that we could always go on a trip when we felt we needed one. Also, all this hospital time put me way behind in schoolwork and I didn't feel like I could really afford to take time off. I realized that I did not want to pick something that would just start and be over with before I knew it. I wanted something I could have and use over time, maybe my whole life. What if I could have a recording studio in my basement?"

In fact, this was the wish that he requested and Make A Wish delivered last December, just before Matthew entered the hospital for his bone marrow transplants. Now that he's home, he's enjoying learning how to use the system. Thankfully, even with his impaired hearing, he's still able to play the guitar and sing.

Danny seems to be doing well. He's busy with school, soccer and baseball. The weekends are chock-full with his practices & games, and we all love watching him play. He's especially looking forward to tomorrow when we all head to Camden Yards to watch the Orioles play our beloved Red Sox.

Jon & I are very tired and very nervous, but just happy to be all together and well under one roof. That's the news for now...

Hope everyone is enjoying a good spring break and holiday...

We are just back from our week in Boston. It was great to get away and spend some close family time; and Boston truly feels like a home away from home for us. We loved visiting with family and friends and we were made to feel welcome everywhere we went. Jon & Danny had an opportunity to meet some of the terrific people Matthew & I had gotten to know last fall. Highlights of the trip included spending time with friends & family, having seders with my sister (7 months pregnant) and the Sperbers, visiting Ali at her new job, dropping in for an impromptu lesson and jam session at Brookline Music School, a warm reunion with the proton beam team at Mass General, kayaking on the Charles River AND a sunny, Saturday afternoon Red Sox game, where we sat in the world's greatest seats - four rows back, directly behind the catcher! Even though the Sox lost to Seattle, it was an extraordinary thrill to be there.

Matthew is feeling great & holding strong on the medical front. However, we are struggling quite a bit with hearing issues. Absorbing the reality of his progressively worsening hearing loss is somewhat like dealing with the impact of his initial diagnosis. Of course, the implications are quite different but, all the same, it is a terrible loss and we are dealing with grief and shock on an emotional level, while at the same time we must function rationally - mobilize ourselves to learn as much as we can, as quickly as possible, to understand the options, make critical decisions, and line up the help we need. It all feels very overwhelming. If you have any experience in this area - or know of anyone who can help us - please email me privately.

Then - there is the situation with my mom. She is in rehab now, close to our house, and doing ok. But I am quite concerned with her persistent anemia problem, which has caused her to be hospitalized twice in the past few months before this incident and which, I am convinced, was the underlying cause of her most recent fall. A huge thank you to everyone who has volunteered to stop by and visit her. It's a huge relief to me to have help in this area, since I am so completely immersed in addressing Matthew's medical & schooling needs.

Adjusting to Home

It's been a while since I posted anything. We've been home for three weeks now. I wouldn't say life is "back to normal" - rather, as one friend aptly put it, it's a "new normal" - but, certainly in every way, we feel huge relief to be out of the hospital, out of treatment, and all together under one roof.

Matthew has been feeling relatively well except for occasional aches & pains and mild stomach distress. He's got his appetite back, is eating well and trying to regain some of the weight and strength he's lost. He's also working hard on schoolwork to make up for lost time, meeting with tutors in math, English & history, and sneaking into school in the middle day for individual lessons and tests. (He's not allowed to attend classes for the remainder of the school year due to concerns about infection.)

Every Monday, we go back to Hopkins for a clinic check-up and bloodwork. The emotional terror (and accompanying mental and physical exhaustion) this induces is almost impossible to describe. Between last Monday's appointment and Tuesday noon when we finally got the phonecall saying the bloodwork was normal, Jon & I could barely breathe from anxiety.

Tonight (Monday evening), as I write this, I am so physically exhausted, I might have been chopping wood all day, but it's just the aftereffects of a day at Hopkins. Today's visit was particularly draining. We had three appointments - the first in Radiation Oncology, where we heard two entirely contradictory opinions about whether or not Matthew should receive additional "booster" radiation treatment for added protection (neither of which reflected the supposed consensus our docs have been giving us for the past three weeks), the second in Audiology, where we learned Matthew has incurred additional hearing loss, and the third in Pediatric Oncology Clinic, where we tried not to hold our breath as they drew the weekly blood draw. At the end of the day, we received the call with the only news that really matters - that the bloodwork looks normal - but the demands of the day had already left us mentally, emotionally, and physically completely spent.

Against the backdrop of these stresses, we are trying to enjoy the good times and get back to our normal routines. In the past weeks, Matthew has visited with friends, hosted a poker night, and participated in book club. Danny has resumed baseball & soccer. Jon's coaching again. I'm making an effort to get back into exercise & yoga. I've also gotten back into my kitchen with a vengeance. In an effort to entice Matthew to eat more, I've baked more in the past three weeks than I did in the past three years.

We're still living in limbo, but we're also starting to make a few plans. We've excited about going to Boston for Passover/spring break to see family members and also many of the new friends we made in the fall. Matthew's planning to take a summer school course in biology and Danny has camp lined up. We're still taking it one day at a time, but we're also trying to cautiously look ahead.

Matthew's incredible attitude still leads us forward. In conversation last week (in the Target parking lot), I asked him if he ever thinks back to the time before "all of this" started. He responded: "Don't go there Mom. It's not worth it. Besides, I still have everything that matters - my family, my friends, my home, my music. That's all that counts. The other stuff really doesn't matter. Now let's go do some clothes shopping...!"

Home at Last

At approximately 4:30 p.m. this afternoon, we arrived home. Matthew walked through the door for the first time since December 16. He helped unpack the car, spoke briefly with Lina and his brother, and then left to play basketball at our neighborhood clubhouse around the corner. Life is good!