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!

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.

Out of the Hospital, Still in Baltimore

We've been sprung! It happened on Sunday, in the aftermath of the Big Snow. Matthew was supposed to be released on Saturday, but we convinced the docs to wait until the snowstorm was safely over. Poor Danny had to reschedule his birthday party due to the storm - more evidence (from his standpoint) that all the forces in the universe are aligned against him. (Actually, he handled it pretty well after getting over his initial rage.)

Matthew and I are now living with Jon's mom in the pleasant Mt. Washington section of the city, about 15 minutes northwest of downtown. We're traveling back & forth to Hopkins every other day for check-ups and tests. Matthew is feeling well - even stronger than after the last round (probably because he remained hospitalized a little longer). He still has to be very cautious about germs, wearing a mask in public and avoiding crowds, but he's got lots of energy and is eating again. (It's pretty annoying for him to be living with his mother AND grandmother, however, both us constantly urging him to eat more and dress more warmly).

We are likely to remain in Baltimore (to be close to the hospital) for another couple of weeks. Hopefully then we will be allowed to return home. For now, we're just thrilled to be out of the hospital.

Since we have received a number of inquiries, I wanted to announce that there will be a memorial service for Jon's dad this Tuesday, Feb. 21, at 3:30 p.m. at the Johns Hopkins School of Public Health. For more details, directions, etc., please email me or Jon.

Hitting the One-Year Mark

As the new month rolls in, it's impossible not to reflect upon the events of the past year. Yesterday, Feb. 1, was the one-year anniversary of the day I first took Matthew to the pediatrician's office to investigate his persistent headache. The remainder of that week was hectic in what is now a much missed ordinary way: We drove kids back & forth to school and had friends over on Friday night. We went out for dinner with friends on Saturday night. We baked a special cake for Danny's 9th birthday and hosted a "Super-Bowl" party for him at the local bowling alley on Sunday. That night, we watched the big game on TV with friends.

The next day, Feb. 7, Matthew stayed home from school to return to the pediatrician's office. By the end of the day, after criscrossing back & forth between the pediatrician and the radiologist, we were finally informed that the scans revealed some type of brain tumor and advised to go directly to the Hopkins emergency room. That night (or rather morning - it was 2 a.m.), we walked for the first time through the doors of the Pediatric Oncology unit (a precise moment one never forgets) and spent the first of many nights to come sleeping in a hospital chair-bed. Two days later, Feb. 9 (on Daniel's actual birthday), we received an official diagnosis.

The news was staggering. The treatment plan (6 cycles of chemo, followed by 6 weeks of radiation) daunting. It seemed as if an impossible gauntlet had been thrown before us - an obstacle course no mere mortal could possibly get through. (This is when Jon & I latched onto the visualization of Matthew as Superman, the inspiration for which came from a trick photo he'd taken several months earlier at a friend's bar mitzvah.) And then, within a few days, just as we were struggling to accept the horror of it, everything changed, unimaginably, for the worse. Matthew's status became critical; he was rushed into the emergency room for shunt surgery; he was in the pediatric ICU for a week, barely conscious and at times unable to recognize us; and we found ourselves begging the doctors to start chemotherapy as soon as possible. All of this happened within the first 10 days.

Since then, most of you know the story. After six cycles of inpatient chemo, everything looked promising. Matthew had finished 8th grade, was feeling strong, swimming on swim team, and planning to resume school in the fall. We celebrated his 14th birthday and the end of chemo, packed our bags and got ready to move up to Boston for radiation treatment...when we got the shocking news that he had relapsed. The latest scan showed the tumor growing. Both at Hopkins and at Mass General, even the doctors couldn't believe it.

We unpacked our suitcases and hunkered down to begin a different chemotherapy regiment. July and August passed. Then, in mid-September, we again received bad news. The latest chemo had failed to halt the tumor growth, so the recommended course was now surgery. Over the next 8 days, we moved through a fog, barely breathing from fear, at the same time dealing with all the necessary logistics - confirming the surgeon, reserving a hotel room, making plans for Daniel.

It was a harrowing 5-6 hours of waiting - the longest hours of our life - but Matthew came through surgery with flying colors - and was home (miraculously) three days later and on the sideline watching his brother's soccer game the very next day. In less than a week, before we could catch our breath, we would be on a plane flying to Boston to set up temporary home and begin radiation treatments. We settled into Brookline and began treatment, five days a week, for six weeks straight. Matthew attended high school and music school and received tutoring in the hospital - and the six weeks whizzed by in a flurry of activity, with Jon & Danny coming up on weekends to visit.

We left Boston at the end of November and arrived home in time for Thanksgiving. The following week, we learned the heartbreaking news that there were elevated tumor markers in Matthew's blood, indicating that tumor cells were active in his body - not in the brain this time, but in the abdomen, transported there by the shunt that had been placed to reduce fluid and pressure back in February. High-dose chemotherapy along with stem cell rescue (a bone marrow transplant) was required - not one, but two times, a "tandem transplant." We sat on the edge of our seats for four weeks, knowing that it was highly toxic to initiate high-dose too soon after radiation, while worrying that every day of delay was giving tumor cells a chance to spread. We entered the hospital in mid-December to begin high-dose chemo and have remained in Baltimore since then. Matthew has rounded the corner on the second transplant. His blood counts are trending upwards nicely and we expect to be released sometime next week, although we will have to remain within close proximity of the hospital for at least another 3-4 weeks, returning for check-ups every other day. And the story is, of course, not over.

Nevertheless, here we are. It is once again Superbowl weekend and once again Danny's birthday. A year has passed. It is almost impossible to believe what we have lived through - 10 rounds (over 40 cumulative days) of chemotherapy, six weeks of radiation, five times in the OR, countless MRIs and CTs and spinal taps. Matthew & I have lived away from home more than half of the past year.

How does one sum up this experience? I'd like to be able to say something profound or eloquent, but I don't think I'm there yet. I have only small bursts of insight, such as: what an exquisite pleasure it is to go to sleep in your own bed (especially with your husband beside you); how extraordinary it is to have a boring, ordinary day; how much simpler life becomes in the midst of a crisis, because your priorities suddenly become very clear (and everything else is so obviously unimportant); how much kindness and caring count during hard times (because you cannot trust a medical professional unless you truly believe that they care about you); and how tricky a thing is fear. You can worry and worry about the thing you fear the most, but most likely that fear will turn out to be nothing; and it will be something else entirely that rises up to get you. And then, of course, there is courage. One could never be grateful to a monster like childhood cancer, but witnessing our son's courage and grace and inner strength has been a breathtaking experience.

I need to close this blog entry with a thank you. We could never have made it to this point without the incredible support of family and friends. Our hearts overflow with thanks to all of you who have helped keep us afloat with meals and childcare and grocery shopping and petcare; with rides to and from the airport and with temporary housing; with books, movies, and other diversions; with emails, cards, letters and gifts; with hospital visits and home visits. Thank you to the teachers and administrators who have personally worked to keep Matthew engaged in learning over the past year and to his friends who have continued to include him in their circle. Thanks to those of you in Boston who reached out to us as strangers. Thank you to the exceptional individuals in the medical community who have gone beyond their professional duties and reached out to us in a caring, compassionate way. You stand head & shoulders above the rest - and we are grateful to know you and to have you on our team.

Transplant Day

Matthew had his stem cell transplant today. The stem cells that were harvested from his body last August have been in deep freeze until now. They were delivered inside a sealed pouch (see right) inside a metal box inside a freezer canister and thawed out in a warm water bath. The pouch is then hung from an IV pole and the contents are infused into his body through an IV line. The whole process takes about 15 minutes and would seem altogether anticlimactic, if not for the fact that those cells are critically needed to replace his entire immune system. Without them, one could not recover from the chemotherapy.

Matthew is feeling really well at the moment. He had three nights of chemotherapy last Wednesday, Thursday & Friday and spent the weekend resting up. Jon stayed in Baltimore and I went home to be with Daniel. It felt a little strange to be home (first time since New Year's Day); sad to say, but at this point I think I'm more comfortable living out of a suitcase than sleeping in my own bed.

Thankfully, the pediatric oncology unit has become a much more comfortable place to stay than it was a few months ago. First off, the floor has been renovated so that all of the rooms are now private rooms. Second, they have replaced the horrid cafeteria food with a room service type program, where all of the peds onc patients can order the food of their choice off a menu at any time of day - and it gets individually prepared in a private dining room and delivered to the room. Interestingly, the docs are noticing that their patients are losing less weight and doing much better nutritionally since the new program was initiated. Funny how that works!

I am sad to report that J0n's dad, Larry Grossman, passed away Friday, January 13, just 10 days short of his 82nd birthday. Jon, his mom, Bobbie, sister Ilene and brother Carl are all doing ok. The family held an informal memorial service in the home on Saturday night. There will be two shiva minyans in Bethesda. In addition, there will be a formal memorial service at Johns Hopkins University (where Larry was a biochemistry department faculty member and department chair for many years) in about a month's time. Please contact Loren Amdursky (nelseh@aol.com) for details. To read about Larry's amazing life and impressive contributions to the field of DNA repair, see the
Johns Hopkins Bloomberg School of Public Health website.

As you can imagine, we are all going through a great deal of stress, both from the week that passed and in anticipation of the week ahead. The weekend brought family members together from many parts of the country, so at least we all had an opportunity to be together. It was a challenge to allow Matthew to socialize and participate, while at the same time trying to keep his fragile immune system safe from germs. On Saturday, he sat in an upstairs bedroom of Jon's mother's house with a mask on his face. Family members were allowed to visit him a few at a time - but only after they, too, donned a mask and lathered themselves in Purell. For the service, he came downstairs, sat apart from the crowd, and performed the Beatles tune, "Blackbird" on the guitar along with his Uncle Carl.

This is the week that Matthew goes back into the hospital for the second round of chemo and transplant. We are heartened by results of the latest tests and by Matthew's strong recovery from round one. At the same time, we are of course apprehensive about what lies ahead. If we've learned anything, it is to expect surprises.

Temporarily Free (sort of)

Matthew recovered quickly enough from the chemo and stem cell transplant that he was released from the hospital this past Wednesday, only 14 days after his transplant. He will recuperate for a couple of weeks before returning to the hospital for a second round of treatment (chemo and transplant).

We are required to remain within 20 minutes of the hospital at all times, which means we cannot go home. Cousins Brett & Elizabeth have graciously offered us their spare bedroom. So Matthew & I are now ensconced in a beautiful condo on the waterfront close to downtown Baltimore and just around the corner from the hospital. Brett & Elizabeth are relaxed hosts and wonderful company, and we feel grateful to have them.

Although it always feels good to leave the hospital, last week was stressful, as Matthew was released in a greatly weakened state and under all kinds of restrictions. Over the past few days, however, he has come a long way and now has much more energy. My focus is on getting him to eat as much as possible to try to recoup some of the weight he has lost over the past weeks. We're currently on a two-hour eating schedule!

Jon & Danny came up on Friday - and the four of us went off to a downtown hotel to have some close family time. We spent the weekend playing Red Sox Monopoly and visiting with Jon's family. Jon's sister Ilene and her husband Greg are in from Chile. The family is all on alert, as Jon's dad is sadly fading.

We are trying hard to keep up our spirits, although this is definitely a tough time. The last treatment was rough on Matthew (as strong as he is) and we have only a brief interlude before it starts all over again. We have to report to Hopkins every other day this week for check-ups and tests, which means we will constantly be on the edge of our seats waiting for the results. We anticipated this would be a difficult time - and so it is.

Happy New Year

The past week has been extremely emotional and intense for our family. Last Sunday, Jon's dad was taken to the emergency room of Sinai Hospital. He had been in rehab at a local nursing home, recovering from hip surgery following a series of accidents over the past few months. However he developed a fever last weekend and arrived at the hospital severely dehydrated and unresponsive. Unfortunately his condition has deteriorated since then and he is now receiving hospice care. Jon's siblings, Ali, and other family members gathered in Baltimore over the weekend to be at Larry's bedside and to help support Bobbie.

At the same time, this was a critical week for Matthew. The week following transplant is always the toughest week for bone marrow transplant patients. Matthew apparently made it through pretty easily, according to the doctors, but still had to endure major challenges. He had frequent, massive nosebleeds which would not stop due to his low platelets and which necessitated almost daily transfusions. He was pretty tired most of the week and had difficulty eating due to mouth sores produced by the chemotherapy. He was on a lot of medication and slept a lot. He also had some high fevers, which were pretty worrisome. Through it all, he has maintained his incredible
attitude and barely expressed a complaint.

By yesterday, he was feeling much better and able to eat and move around. He had visitors during the day; and we were able to spend the early part of New Year's Eve evening all together. Most importantly, his blood counts are trending up nicely, indicating that his body is recovering well from this cycle of chemotherapy. Once he is completely recovered, he will have a brief break and then we expect to start all over again with a second chemo cycle, followed by a second transplant.

This was also Danny's winter break week. He had playdates with friends, spent time with Jon & me and other family members, and visited with Matthew in the hospital. It wasn't exactly a vacation, but I think he had an ok time. It's tough for all of us, but perhaps especially for him.

Given the intensity of our lives right now, it's hard to think very far ahead. However, we certainly are hoping and praying for a better year than the one that just ended. Wishing all of you a happy new year and, most importantly, a healthy one.