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!!