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.