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.

So this is what it feels like to spend Christmas/Hanukkah in the hospital. There are very few people in the hospital. The halls are practically empty, except for those few who have to be here. I feel especially bad for the patients, families & staff who celebrate Christmas. It's so "unfestive" here. Hanukkah is not a major holiday, so being here tonight is not so different from being here any other night. But to spend Christmas in the pediatric oncology unit must be horrible. No one even utters the words, "Merry Christmas." There's just nothing "merry" about it.

Matthew is doing pretty well, considering all he's been through the past week. He weathered the chemo pretty easily and the stem cell transplant went off without a hitch. He's looking good, eating a little, and has pretty good energy. The major problems over the past few days have been nosebleeds (a problem when you have low platelets), an allergic reaction to a transfusion, minor fever, some abdominal pain and nausea. All of this sounds like a lot, but in the scheme of things, I guess, not very serious.

We spent this first night of Hanukkah together in the hospital. We lit our electric menorah, sang blessings, and gave the kids presents. Afterwards, we played the traditional dreidel game, spinning the top to see who could win the most chocolate coins.

Hanukkah is, of course, a holiday that celebrates miracles. I guess I never thought much about that on a personal level before, but this year is certainly different. In that spirit, I found this very meaningful quote that I printed out to share with the other families and staff:

"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."
Credit: Chanukah with Rebbe Nachman of Breslov by Yehoshua Starrett, Breslov Research Institute http://www.nehora.com/

Wishing you happy holidays...

Skating on Thin Ice

It's Sunday evening and I'm writing from Matthew's bedside. He's received two days of chemo so far. Tonight is the third and last course. He'll then have two days off treatment before receiving his stem cell transplant on Wednesday. He's feeling tired, has a slight fever, and is having some stomach discomfort, but otherwise seems to be handling the chemo pretty easily. Today he felt well enough to have visitors, although he's clearly feeling pretty knocked out.

It's been relatively quiet since we arrived at the hospital, but we're still reliving memories of Friday, a day so intense, so surreal, as not to be believed. We woke up that morning with understandable anxiety knowing that Matthew was headed back to the hospital for major treatment, but we had no idea what lay in store. Challenge #1 was finding Jon's car dead in the driveway. We abandoned our plan of taking two cars to Hopkins, enlisted Lisa S.'s help to get Jon's car towed to the garage, loaded up my van with the considerable amount of luggage, food, room furnishings, etc., we'd packed, and headed off to the hospital.

Challenge #2: All week long, we'd been awaiting a decision from our health insurance company, Unicare, to approve Matthew's treatment. At the same time, to avoid any possible delay in treatment, Jon had begun talking with the hospital to come up a private pay agreement in the event the insurance decision did not come through on time. The hospital took an extremely tough position and would not agree to reasonable terms. Jon's law firm (the good guys in this story) generously stepped forward to serve as our guarantor and negotiate an agreement on our behalf. Thursday night, things reached a climax, as Unicare (the other good guys in this story) approved the initial transplant, while the hospital's legal department (the bad guys in this story) refused to accept the approval and continued to press for extraordinary financial concessions. On Friday morning, as we were driving to the hospital, the drama continued to play out as the hospital's legal counsel vowed to bar Matthew from admission unless we agreed to their outrageous terms.

Challenge #3: Halfway to Baltimore, with Jon in the midst of intense strategy discussions with his firm and the insurance company, my van (an Odyssey - interesting literary significance) started to overheat, forcing us to pull over to the side of I-95. We inched down the shoulder of the highway heading for the nearest exit. Miraculously just off the exit, we found a small auto repair shop where the mechanic diagnosed the problem (the thermostat) and promised to fix it by end of day. We tried calling various people (including the state and county police) to come rescue us, eventually reaching Sabra G. So, there we were, after all we've been through in the past year, with two cars broken down on the same day, in an auto repair lot in Elkridge, MD, en route to the hospital for a bone marrow transplant, wondering if Hopkins would even admit us - with so many calamities happening at once and, as one friend articulated, the sense that the breakdown in our outer world was reflecting the chaos of our inner world - when Matthew let out a cry of delight. He had spotted a patch of ice just outside the car (it had sleeted the night before) and then, in the next moment, he was outside on the ice doing pirouettes and Michael Jackson moonwalk moves and mugging irresistible faces. He was skating on thin ice - but he sure was enjoying himself.

Although we felt like emotional wrecks, things actually began to look up from that point. Sabra rescued us from Elkridge and we transferred all our gear into her car. We arrived at the hospital (and, to our relief, were not stopped at the door), where our doctors greeted us warmly. Later in the afternoon, Unicare called to tell us they were so outraged by Hopkins' behavior that they were making an executive override decision to approve ALL of Matthew's treatment. Matthew was admitted to the hospital and started to receive chemotherapy later that evening. Jon stayed with Matthew; Sabra drove me home via Elkridge, where I picked up our repaired van, and drove home to pick up Danny. The rest of the weekend has been fairly uneventful and Matthew is doing ok.

The question is, what next?

(From Loren Amdursky, family friend)

To the Friends of Matthew:

I am writing to you to let you know that Matthew is back in Hopkins for an extended stay for very aggressive chemo treatment. He is expected to be in the hospital for the next 4-8 weeks, as the high-dose chemo regimen will require a bone marrow transplant with Matthew's own stem cells. This treatment has been expected since the summer, but that does not make it any easier. One parent will be at the hospital at all times and one will be at home with Danny.

Naturally, everyone is very worried, since the treatment carries a number of serious risks. Jaime will post updates to the blog when she feels up to it, but it may not be too frequent .

We will again be providing meals for the family at home (Carol Feder at (feder@comcast.net) to volunteer) and scheduling visitors to Hopkins (Yael Kane (ykane@jnf.org) at will be keeping the schedule). We understand that Matthew and parents will be allowed to have (healthy) visitors, as long as he/they feel up to it. I will continue to try to keep up communications as well as periodic requests for particular kinds of help, and Sabra Gelfond (sabra_g@hotmail.com) will be keeping a schedule of kid visitors and Danny's needs.

It means a lot to know that you are thinking of Matthew daily, and holding the family in your thoughts and prayers.

With warm wishes for happy holidays, peace and good health for us all,
Loren

What's Ahead

Our last day in Boston, Tuesday, Nov. 22, was a busy one. We drove Matthew to Mass General for one final radiation session, then came back to the apartment, packed up the car with the four of us and all our gear, and made the long drive home.

Two days later, we hosted Thanksgiving dinner for our extended family. Thanks to the culinary generosity of various friends, each of whom prepared a delicious dish, all I needed to do was set the table and roast the turkey. It was a wonderful gift to have dinner provided for us in our own home and we especially want to thank everyone who made it happen. It was a great feeling to be all together in one place - and it did not take long at all for Matthew & me to adjust to being at home again.

I wish I could say that these feelings of peacefulness and relaxation have continued on, but unfortunately that has not been at all the case. Last week, we drove back & forth to Hopkins for three days out of five
undergoing various tests, and today we were back again. It appears that Matthew will be readmitted for high-dose chemotherapy sometime in the next 2-3 weeks - and will need to remain in the hospital receiving treatment and/or going through recovery for the better part of the next couple of months. We knew there would be additional treatment ahead, but did not realize the full extent of it, so it has been very difficult for us to accept this latest news. It certainly has been a swift and hard comedown from the fun-filled days we were having in Boston.

Against this backdrop, we are still striving to maintain some sense of normalcy. Since arriving home, Matthew has attended two big social events with his AZA youth group. We went bowling as a family this weekend and also attended our mother/son book group. Matthew is looking forward to being in school as much as possible over the next couple of weeks. In fact, snow is falling as I write this update - and Matthew's probably the only kid in his grade hoping there is NOT a snow day tomorrow!

Daniel is doing great. He's matured a lot physically and emotionally over the past couple of months. The joke in our house is that Danny grew so much because he didn't have to compete with Matthew for seconds at dinner (or, more likely, because of all the delicious meals everyone was delivering to the house).

We are gathering our collective strength for the difficult period ahead, even as we have confidence in Matthew and our family to make it through. We will need lots of help, moral and logistical, and we are comforted to know there are so many standing by to support us. We will ask for specific help in the weeks ahead both here on the blog and via our email list. For now, we just ask that you continue to hold Matthew in your thoughts and prayers.

Settled in Boston

Just wanted to post a quick note to say that we are now settled in Boston and doing fine. Matthew started receiving radiation treatment last Tuesday, so tomorrow starts the second week. He is so far feeling no ill effects from the treatment - and for this, we are grateful.

We were extremely fortunate to find a great furnished apartment in Brookline, just down the road from Fenway Park. (Can glimpse the Citgo sign from our window - small consolation given the Red Sox' demise.) Jon & Danny were here with us through the weekend - just long enough to get us unpacked and to teach me the essential driving routes. Last week we were able to spend Yom Kippur with Jon's cousins Josh & Anna, and their parents, Susan & Joel. We were also able to see Ali and Sara & Steve (my sister & brother-in-law). It's been great having so much family support.

All along, Matthew has been excited to make the move up here, viewing it as a terrific adventure. I, on the other hand, was truly panicked at the thought of leaving home, separating the family, and losing my support system . It was especially hard to do this so soon on the heels of surgery, with so little advance notice, and in the midst of the high holidays.

I would like to use this space to profoundly thank everyone who gave me the courage and energy to make this very difficult transition. Thanks to you, by the time we arrived in Boston, we already had a list of housing options, families, social service agencies, schools & synagogues to contact - so many, in fact, that I still haven't had time to follow up on all of them. My concerns about being alone in a strange place disappeared with the warm outpouring of caring & concern. Arriving here without a place to live, we were graciously put up in various homes, received multiple invitations to dinner and many other offers of support. Within the first few days, several different families offered to have us live in their homes for the duration of Matthew's treatment. We have been overwhelmed by all of the generosity and kindness.

With housing in place, treatments underway, and Matthew feeling well, our goals for this week are to put some type of schooling/tutoring arrangement in place, to help him find a musical outlet (he's been busy playing guitar, writing and recording songs), and to find ways for him to connect with other teenagers.

As always, we'd love to hear from you. Best ways to get in touch are by email or cell phone.

Home

We're home. Matthew's doing great. Ali's flying into town. We look forward to having a quiet weekend, but we would love to hear from you!

HOME!!!!

Miraculously, Matthew's counts shot up overnight and he was released this a.m. More news later - too much to do and enjoy!!

Still here

Hospital's getting old right about now. On the positive side, Matthew's feeling good. Fever has been normal (or close to that) since yesterday. On the negative side, his blood counts are still low and they're not going to release him (us) until his counts recover (which doesn't look like it's going to happen so soon). Today, our friend Ellen E. came to visit, bringing Matthew's backpack and my computer. I think I got the better end of the deal, since I'm doing email right now and Matthew's working on formal geometry. He's learning about all the various permutations on if-then statements and is coming up with lots of good examples (e.g., If my blood counts go up, then we get to go home before the weekend. If my blood counts don't go up...)

Back in the Hospital :(

Well, as you can see, our lives are definitely up and down from day to day - the past few days were up; right now, we're down.

I'm writing this from Hopkins, where Matthew was admitted yesterday for fever. This was not an unexpected development, as we knew his white count was very low from chemo the previous week and he was at high risk for infection. Still, it's always a drag to end up here - particularly when he had really hoped to be back at school this week. At least this time around, we've got a private room on the teen floor. There's a teen lounge with a pool table and various electronic diversions, so when Matthew gets a bit more energy, he'll have something to do. I also brought his guitar, but his throat is too sore to sing. Overall, though, he's feeling ok.

Jon's home taking care of Danny. We are grateful to our wonderful friends and neighbors for stepping in at a moment's notice to make sure Danny is cared for (not to mention Maggie & Jovite). We will be in the hospital until Matthew's temperature and white count return to normal. I'll keep you posted...