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...
Dec 25, 2005
Dec 18, 2005
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?
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?
Dec 16, 2005
(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
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
Dec 5, 2005
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.
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.
Oct 9, 2005
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.
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.
Sep 30, 2005
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!
Sep 17, 2005
HOME!!!!
Miraculously, Matthew's counts shot up overnight and he was released this a.m. More news later - too much to do and enjoy!!
Sep 15, 2005
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...)
Sep 14, 2005
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...
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...
Sep 12, 2005
Quick Update
Just a quick note to say Matthew's doing fine. We enjoyed an active, fun-filled weekend that included watching Danny's soccer team play their first game of the season (with coach Jon and assistant coach Matthew standing on the sidelines), canoeing/kayaking on the canal, and lots of music (Silver Spring Jazz Festival and Takoma Park Folk Festival).
This is the week where Matthew's blood counts are low, so we're keeping a close eye on him. Jon took him to Hopkins today to have his blood checked and he needs to return on Thursday, but hopefully Matthew can attend partial school for the remainder of the week.
This is the week where Matthew's blood counts are low, so we're keeping a close eye on him. Jon took him to Hopkins today to have his blood checked and he needs to return on Thursday, but hopefully Matthew can attend partial school for the remainder of the week.
Sep 8, 2005
Home from the Hospital
Got home this afternoon after another three-day round of inpatient chemo. Happily this one was easy and quick. Easy roommates. Easy chemo. Matthew handled everything like a pro. He brought his guitar along and had several "gigs" (as he put it). Late into the night on Tuesday, he played for various visitors and the nighttime cleaning crew. During the day on Wednesday, he set up in the kitchen and played for the nurses and doctors on their rounds. Later in the day, he held a mini-concert by request in the children's playroom. Only problem was that the under-5 set didn't quite share Matthew's musical horizons. When asked what "artists" they listen to, the kids looked at him blankly. Finally, Matthew sang & played the Barney theme - something they recognized - and the kids all applauded.
Matthew seems to have no problem resuming normal life once he gets home. He walked in the door, played guitar for a while, then headed to a friend's house. As for me, I'm always disoriented after spending extended time in the hospital and it takes me a while to "re-enter." The hardest part isn't the lack of material comfort (sleeping in a chair, lack of space, not having a private bathroom), it's the loss of control and the endless waiting - waiting for a bed to open up so you can move into a room, waiting for the chemo to be sent up from the pharmacy, waiting for the doctors to write up the discharge orders, waiting for the nurses to disconnect the IV so we can go home. Everything takes three times longer than you expect - and the stress of sitting & doing nothing but waiting is exhausting.
Matthew seems to have no problem resuming normal life once he gets home. He walked in the door, played guitar for a while, then headed to a friend's house. As for me, I'm always disoriented after spending extended time in the hospital and it takes me a while to "re-enter." The hardest part isn't the lack of material comfort (sleeping in a chair, lack of space, not having a private bathroom), it's the loss of control and the endless waiting - waiting for a bed to open up so you can move into a room, waiting for the chemo to be sent up from the pharmacy, waiting for the doctors to write up the discharge orders, waiting for the nurses to disconnect the IV so we can go home. Everything takes three times longer than you expect - and the stress of sitting & doing nothing but waiting is exhausting.
Sep 3, 2005
Since Our Last Update
It's been six weeks since our last email update. At that time, we had just learned that we would not be going to Boston in July for radiation as planned, and that Matthew would need additional chemotherapy to put the tumor back into remission. Let me fill you in on what's been happening since then...
How's he feeling? First, and most importantly, Matthew is feeling great these days. He has been back in chemotherapy since July 21 and is now in the middle of the second cycle. Each cycle lasts approximately 4 weeks. We've been driving to Baltimore once a week for outpatient treatment. On the third week of each cycle, he gets hospitalized for three days of inpatient treatment. He is receiving a different combination of chemo drugs than before; yet mercifully he is tolerating the treatment with practically no discomfort or side effects.
The only problem he has experienced is that these drugs have more of an immunsuppressive effect, which means that his blood counts go down and he is at increased risk for fever & infection. At one point last month, he developed a fever and needed to be hospitalized for nearly a week. Obviously this was a major drag and we're told it is likely to happen with each chemo cycle. At least next time, we'll know the drill.
How are the rest of us doing?: Despite the tough news this summer and the major upset in our plans, we tried very hard to enjoy the remainder of the summer. Matthew qualified to swim for his team in the Divisionals Meet. We enjoyed a great Nationals' game. We escaped for a long weekend to the Homestead Resort for some R&R, fishing & horseback riding. We had nice visits with our cousin from Connecticut end and our former au pair from Denmark. Danny attended soccer camp and also spent a week in Philadelphia with Uncle Carl, Aunt Julie and his beloved Cousin Emily.
The highlight, however, was our 5-day getaway last week to Woods Hole, Mass. , where we usually go each summer to visit Jon's parents. We enjoyed perfect New England summer weather. We went to the beach & relaxed. We went fishing one day, caught loads of bluefish & fluke, and enjoyed a major fish dinner with friends. The trip was capped off by a once-in-a-lifetime visit to Fenway Park, where Cousin Josh Klevens arranged for us to receive VIP treatment. We were allowed on the field and in the dugout - and the kids (major Red Sox fans) were escorted back into the private area to meet Johnny Damon (that's him in the photo!), Trot Nixon, and many of their other favorite players. We then watched the Sox beat the Tigers 9-8, from spectacular skybox seats. Danny had the best line of the evening, as he turned to me and said, "Mom, can it get any better?"
This past Tuesday, Danny started fourth grade and Matthew attended his first day of high school. Our school (JDS) continues to support us in every way. They have arranged things so that Matthew can take a shortened schedule (Geometry, English, World History, Music and Study Hall). He will attend class as much as possible this semester, with Montgomery County providing home schooling during those periods when he is at home.
What's the plan? Our recent experience tells us not to put too much faith in long-term plans. However, the tentative plan is that Matthew will undergo about six more weeks of the current chemo regimen, which will bring us to mid-October. Hopefully the tumor will be in remission at that point and he will be ready to receive high-dose chemo with autologous stem cell rescue. This requires transfusing his own stem cells back into his body. (His stem cells have already been reserved for this purpose.) This treatment is pretty intensive and will require him to be in the hospital for at least a solid month. Sometime after that (December? January?), it is likely that we will bring him to Boston for radiation treatment.
What help do we need? We are accepting food once again. It really helps to have a prepared dinner ready on those days when we are gone all day in Baltimore receiving outpatient treatment, as well as during those extended periods when Matthew is inpatient and Jon & Danny are home alone. All food is being coordinated by Carol Feder, who can be reached at feder@comcast.net. I should warn you that we are working with a nutritionist to provide Matthew with a special, healthy diet, so there are some restrictions as to what he can and can't eat, but it's not all that complicated and Carol can explain it to you.
Other than asking for food, we're doing ok for now. The tough part for us is no doubt coming up later in the fall when Matthew will require more extensive hospitalization and our family will be physically separated from one another. We'll definitely need more support then and will ask for help as that time approaches.
Finally, just want to thank you again for keeping us in your thoughts & prayers. We look forward to hearing from you. (You can send us a personal email by clicking on one of the links listed above - or you can sign our guestbook.)
Welcome to Our New Blog Site
Dear Family & Friends:
We're trying out this blog as an experiment - in the hope that it will help us stay better connected with all of you. Our email distribution list has grown to the point where it has become a little unwieldy. (The server thinks we're sending out spam!) Moreover, there have been times when I've wanted to let you know what's going on, but didn't have the energy to compose a major email message. Hopefully this format will allow us to post a running update of how Matthew and the rest of the family are doing - and allow you to check in with us periodically at your convenience.
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