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.
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