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?

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.

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.

Music to Our Ears

Last week was another emotional blockbuster, but happily there is good news to report.

First of all, Larry's memorial service on Tuesday was attended by over 300 people. It filled two auditoriums at the School of Public Health. It was a beautiful program in which Larry's colleagues and grad students paid tribute to him as a scientist, colleague, and mentor. Jon, Carl & Ilene also gave beautiful remarks. The service came at the end of a long day during which Matthew had to undergo a three-hour PET scan, the first of a series of post-treatment "restaging" studies. In the middle of the service, I saw our oncologist's number flash on my phone. I waited until the end to call him back, my heart in my mouth.

Thankfully, the report was good. It was the first of several tests that week, including a brain MRI, an abdominal CT scan, a spinal tap, and blood tests. Each day another test, another period of interminable waiting, another phone call. Somehow, we got through it all without flinching. Finally, on Friday afternoon, I received the call saying the last tests were clean. We had made it through the first gauntlet. Our sense of relief was enormous, but tempered by the knowledge that this was only the first of many checkpoints to come. Next week, there will be another test for tumor markers - and every week thereafter for the foreseeable future. Each time we will hold our breath; and each time I will freeze when our doctor's name appears on caller ID.

***

As I started to write this, music was coming from the next room. Matthew was playing a Dave Matthews tune on the guitar and singing along: "I am no Superman. I have no answers...for you." This would be unremarkable except that he has not picked up the guitar or sung for several weeks...since the second round of high-dose chemo left him with mild to moderate hearing loss in one ear, moderate to severe loss in the other.

Just days before heading into the first transplant, we learned that a common side effect of one of the chemo drugs is hearing loss. The loss could be mild or severe, but most likely irreversible. It seemed impossibly cruel and unfair that Matthew might lose the one comfort most important to him - his music; but we had to accept that risk since there was no alternative to the treatment.

A couple of weeks into the first transplant, we tried not to panic when Matthew reported feeling one ear blocked. The effect seemed to be more pronounced in one ear than the other, so we held onto a foolish hope that it was only earwax until a hearing test just prior to the second transplant confirmed that there was a degree of loss in both ears. Terrified, we entered the hospital for the second transplant, knowing that additional loss was likely. Would he wake up one day unable to hear at all? We held our breath and tried not to dwell on this possibility.

After the second round, it soon became clear that his hearing had worsened. He could no longer hear us unless we faced him and spoke loudly. A second audiogram was scheduled while Matthew was inpatient. It was emotionally wrenching to sit next to him in the testing room and watch him miss one word after the next. That night he tried valiantly to sing and accompany himself on guitar, before giving up in frustration. Later that night, he wrote a powerful poem with the ironic refrain:

The notes are bad, bent out of key,
but it sounds fine, just fine to me.

In the next couple of weeks, Matthew worked hard to adjust to his hearing deficit. We purchased a small amplifier from Radio Shack, which helped a lot, and he also started reading lips. Talking to one of us or working with a tutor one-on-one wasn't a problem. However it was definitely hard for him to follow a conversation with more than one person talking.

This story ends on a happier note literally and figuratively. Before leaving the hospital, Matthew was fitted for tiny hearing aids - and just last week, they arrived. Their impact has been immediate and dramatic. Matthew sang all the way home in the car, the first time he'd sung in weeks. He chatted away at dinner that night and afterward went upstairs to play guitar. It's hard to describe what beautiful music this was to our ears. Hearing aids can't restore his hearing 100%, but they seem to go a long way.

***

We were all together in Baltimore this weekend - and we had a wonderful time. The latest word from our doctors is that we should be able to go home sometime next week. That will be nice.