Toby has now completed five cycles of chemotherapy. These first five cycles are known as the induction phase with the goal being to "induce a remission," that is, to clear the body of any detectable neuroblastoma. Before starting treatment, the neuroblastoma was in Toby's adrenal gland, as well as in his abdomen, bone marrow, and in many of the bones throughout his body including several of the cervical vertebrae. After the third cycle of chemo, Toby had re-evaluation scans and bone marrows to determine how well the treatment was doing its job. At that time, the primary tumor in the adrenal gland and the abdominal tumors had shrunk significantly, but there was still some residual disease in the bone marrow and the lesions in the cervical vertebrae were relatively unchanged. The hope was that the remaining two induction cycles would successfully take care of the marrow and cervical involvement. Last week, before starting his fifth cycle of chemo, Toby had (yet) another bone marrow aspiration and biopsy done to see if the neuroblastoma that had metastasized there was now gone (the vertebrae will be looked at later to see how they've responded). Mooki and Stephen just met with Toby's doctor and unfortunately, there is still evidence of neuroblastoma in Toby's marrow.
What this means is that instead of being in a complete remission, Toby's disease is classified as being in partial remission. This has many implications, most immediate is that rather than proceeding with the next phase of radiation and antibody treatment, Toby now has to undergo an "extended induction" with another round of chemo. This sixth cycle will combine cyclophosphamide, which Toby got in previous cycles, with a new drug called topotecan. The idea is that because the neuroblastoma isn't responding as readily as hoped to first-line chemo, additional novel chemo is introduced in an effort to induce a remission.
Obviously, this is bad news. While many kids with advanced neuroblastoma need extra cycles of induction-chemo to clear the neuroblastoma, this is not what we were hoping for.
Toby is still recovering from this most recent round of chemo with all the usual potential bumps in the round (risk of infection, frequent transfusions, etc), but this is an especially big and devastating bump. In the next couple of weeks Toby will have the sixth cycle after which his doctors will take another look at his marrow and he will have a complete set of restaging scans.
Mooki and Stephen are distraught, depressed, and frustrated. It seems as if each small treatment-related gain is followed by an equally, if not harsher setback, forcing them to come to grips with a new reality. Throughout these horribly difficult days, weeks, and months Mooki and Stephen have continually reinvented themselves and have found new ways to remain strong for Toby. This is no easy task. Now more than ever, Mooki and Stephen need your continued love, support, and encouragement. Please write, post a response to the blog or send Toby a picture or card. I will be in NYC tomorrow for a few days and will send another update once there.
Yoram
Monday, July 30, 2007
Thursday, July 26, 2007
A better day
Thank you so much for your comments after my last post. Your words grounded and comforted me, and reminded me why we're doing this. Yesterday was also a better day for Toby: he ate a little toast, had some visitors and participated in the pediatric talent show, where he performed a magic trick to rousing applause. We leave in a few minutes for the third day of chemo.
love, mooki and stephen
love, mooki and stephen
Tuesday, July 24, 2007
Crying
It is 5 pm and as i watch toby sleep, i cannot stop the tears. i've never written during chemo, because it's so hard to sort everything out. there's a huge amount of purely physical challenges and an equal amount of information to digest. there's the awful sights and sounds of the pediatric ward. and then there are the continuous waves of emotion, which are pushing me down today, no matter how hard i struggle to rise above the surface to take a breath.
this is our fifth time here, watching toby as he endures the onslaught of chemotherapy. much is familiar: today we see a tiny baby hooked up to yards of tubes, an 8-year-old with such a shrunken body that she looks like she’s four, many children who can't walk or move or stop vomiting, kids with skin color so unnatural and mottled that they look like preserved scientific specimens, children with disfigured limbs and anguished faces, and we hear many, many screams of pain. We are exhausted and depleted and sad, but shocked anew each time we witness the barbaric treatments for this most terrible disease. The children here are all enduring the worst and it should not be so.
There’s also the unfamiliar: this cycle carries with it the risk of further hearing loss. Toby already has some difficulty discerning the difference between the letters “t” and “f” and “s” when they appear at the beginning of words. This is called high-frequency hearing loss and it can worsen with this cycle, to the point where hearing aids are necessary. This is also the first cycle that we’re starting at a very low bodyweight and the first time that Toby is completely without eyelashes, adding another uncomfortable element to the mix. His eyes are constantly irritated without eyelashes to shield light and dust. Toby’s counts rose over the last week, but not nearly as high as in the past. His marrow has taken a real beating and it’s obvious that his little body is struggling to keep afloat with so much working against him: there’s the huge scar left over from surgery, and the four new incision points from bone marrows that were done on Monday. There’s the low counts that cause exhaustion and the low weight that makes sitting in any position uncomfortable… the bones stick out everywhere and there’s just no fat left to cushion him. And there’s the overwhelming nausea from the drug cisplatin. My brother called this chemo agent, “the worst of the worst.”
Today we also have to contend with the unthinkable: a possible 6th cycle of chemo and a possible 2nd surgery for the lesions in Toby’s neck, followed by more chemo. Our doctor spoke of these steps today, and he'll determine if they're necessary once this cycle is complete and followed by a full work-up of scans: repeat CTs, MIbGs, MRIs and more bone marrows.
Through all of this, Toby doesn’t complain or cry. He is in pain, sick, hungry, nauseous, and unbelievably uncomfortable, but he’s still making conversation, still pointing out that the taxi medallion number appears on the top of the cab, as well as on its license plate, still occasionally smiling.
And my biggest fear: that this intervention will “break” my beautiful child. That he will not be Toby once this is through. I look at him and cannot believe what he is enduring. And I wail.
this is our fifth time here, watching toby as he endures the onslaught of chemotherapy. much is familiar: today we see a tiny baby hooked up to yards of tubes, an 8-year-old with such a shrunken body that she looks like she’s four, many children who can't walk or move or stop vomiting, kids with skin color so unnatural and mottled that they look like preserved scientific specimens, children with disfigured limbs and anguished faces, and we hear many, many screams of pain. We are exhausted and depleted and sad, but shocked anew each time we witness the barbaric treatments for this most terrible disease. The children here are all enduring the worst and it should not be so.
There’s also the unfamiliar: this cycle carries with it the risk of further hearing loss. Toby already has some difficulty discerning the difference between the letters “t” and “f” and “s” when they appear at the beginning of words. This is called high-frequency hearing loss and it can worsen with this cycle, to the point where hearing aids are necessary. This is also the first cycle that we’re starting at a very low bodyweight and the first time that Toby is completely without eyelashes, adding another uncomfortable element to the mix. His eyes are constantly irritated without eyelashes to shield light and dust. Toby’s counts rose over the last week, but not nearly as high as in the past. His marrow has taken a real beating and it’s obvious that his little body is struggling to keep afloat with so much working against him: there’s the huge scar left over from surgery, and the four new incision points from bone marrows that were done on Monday. There’s the low counts that cause exhaustion and the low weight that makes sitting in any position uncomfortable… the bones stick out everywhere and there’s just no fat left to cushion him. And there’s the overwhelming nausea from the drug cisplatin. My brother called this chemo agent, “the worst of the worst.”
Today we also have to contend with the unthinkable: a possible 6th cycle of chemo and a possible 2nd surgery for the lesions in Toby’s neck, followed by more chemo. Our doctor spoke of these steps today, and he'll determine if they're necessary once this cycle is complete and followed by a full work-up of scans: repeat CTs, MIbGs, MRIs and more bone marrows.
Through all of this, Toby doesn’t complain or cry. He is in pain, sick, hungry, nauseous, and unbelievably uncomfortable, but he’s still making conversation, still pointing out that the taxi medallion number appears on the top of the cab, as well as on its license plate, still occasionally smiling.
And my biggest fear: that this intervention will “break” my beautiful child. That he will not be Toby once this is through. I look at him and cannot believe what he is enduring. And I wail.
Sunday, July 22, 2007
Fifty
Many years ago, before Toby was born, Stephen and I took Yoni to his first sleepaway camp and then spent the rest of the weekend nearby, at a small bed and breakfast. In the morning we took a 10-mile bicycle ride through the woods and found ourselves, unexpectedly, at a beautiful hidden pond. Ringed by tall trees, the pond was completely deserted and still. Tiny white flowers floated on the dark surface and small dragonflies dipped and shimmered over the water. We couldn’t quite believe our eyes when we sighted the rough-hewn dock and diving board. The board, completely out of context, slyly winked.
It had been a long, hot ride and we desperately wanted to swim. The pond beckoned silently. Stephen went first, stepping purposefully onto the board, then slicing through the water neatly and with minimum effort. I didn’t see the board move. And now it was my turn. I walked to the edge, looked down into the unyielding darkness, and realized that I wouldn’t be able to do it. No matter how many times I readied myself by saying “one, two, three, jump!” my knees buckled at the last minute and the board flabbily shook in embarrassment. I was scared of so many things: the color of the water, not knowing what exactly was at the bottom or how deep it would be, the squishiness of the mud, the possibility of pondgrass, water bugs, seasnakes or worse. I longed to feel the cool water envelop me and I knew it would be a formative moment, but I just couldn’t take the plunge. And so I sat on the diving board and cried bitterly over it all: my inadequacy, my inability to quiet a churning heart, my absolute knowledge that I had ruined a perfect day.
Stephen stayed in the water for an hour, waiting for me to fight my demons. He didn’t cajole or tease or lose patience. He didn’t engage in any convincing games, nor did he sigh and exit the water. Stephen never gave up on me. He let me come to my own place of fear, and he waited while I worked through it. I am sure that he encouraged me, but what I remember most was his presence: bobbing in the water, smiling, waiting for me to be ready. He did not leave.
And then I did it. I jumped right into his arms and laughed with relief. And then we jumped over and over again, relishing the coolness, the sweet smell of the water, and the perfection of the afternoon.
Stephen turns 50 tomorrow.
Before Toby got sick, I had planned to mark this day with a no-holds-barred celebration. It hasn’t quite worked out that way and I hope Stephen will forgive me for this very public display of affection. In the absence of an actual party, I’ve decided that everyone should know how I feel about my extraordinary husband.
He is the gentlest of men. He can calm the chaos in my heart with a simple, warm embrace. He has patience in spades. He maintains hope like nobody’s business. He has unparalleled musical sensitivity. He has fantastic taste. He's a brilliant artist. And we all agree, that when Stephen is around, everything is more relaxed, more open to possibilities and just more fun.
Stephen is able to make a conversation with Toby into the stuff of legend. And he is the most incredible father: patient, loving, playful, wildly imaginative. But these words mean nothing, without actually seeing what goes on between Stephen and Toby. My own father gets tears in his eyes as he watches them play. I have eavesdropped on Stephen-Toby conversations and felt like I was in the presence of God. There is something ineffable, perfect and beautiful that occurs when the two of them forecast the weather in Antarctica or talk about chipmunk, wally worm and the gastro-intestinal effects of baked beans and cabbage rolls. Through his love for Toby, Stephen has taught me again and again how to be a better parent.
During a recent inpatient stay, Stephen spent the night with Toby and shared the room with a Hasidic father whose 2-year-old son has sarcoma and was admitted for dehydration. The father was highly observant, dressed fully in black, with black hat and sidecurls, the whole gesheft. The following morning, when I arrived, the man stopped me in the hall outside the room. Usually Hasidic men do not talk to women outside of their immediate family, so I was taken aback and apprehensive. He looked at me, directly in the eyes and said, “I have to tell you that I have never seen such a good father as your husband. The way he talked to your boy through the night, the patience he showed, was remarkable. You need to know this. He is something special.”
A wise friend once remarked that Stephen is my tzaddik. At first I translated that to mean “my righteous man,” but I’ve since learned that tzaddik refers to someone who does what is right and just in his relationships. I cannot think of a better description of Stephen.
So, remember how Stephen helped me at the pond? It’s the same way he’s helping me now. We jump, together with Toby and Yoni, into the depths of the unknown every day. We don’t know what’s at the bottom… it may be unpleasant or much worse… it could kill us. Or possibly, it just might choose to swim by and leave us blessedly alone. There are moments when we notice the beauty that floats in our midst and there are many more moments that are cold, dark and frightening. But I never feel like I’m alone in this pond. Stephen is always near me, always ready to hold out a hand to me, always there. Happy birthday, my husband.
I love you,
m
Thursday, July 19, 2007
“It’s so beautiful here”*
*Said gloriously by Toby, as we hurtled down the service road under the highway, passing rusty playgrounds and sand piles, barricades and the backs of buildings. 6 pm, Thursday, on our way home.
And as the car got closer, sharing Court street with bicyclists and strollers, he said, “I’d like to spend a little time outside, mommy, and maybe after dinner we can go to that store for an orange-cream ice.” And then we arrived and he skipped across the threshold, delighting in each doorknob and light switch. And Randy’s cd was loaded and toby danced. And laughed.
And there were two strawberries and a pickle and three forkfuls of diced macaroni and cheese. And a bath and two stories. And chatter. And we saw that life is good.
*****
This is how toby falls asleep:
He turns on his side, extends his arm under his head, to reduce the weight on his neck, he sighs and then he whispers, “ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen.”
This is how toby meditates when he feels pain:
“Toby, if you could have your very own elevator, what would it look like?”
“It would have bright green doors on the outside and when it opened, the inside would be pink and furry. And there would be music. And stars on the top. And it would go to all the floors.”
This is one thing that Toby did two weeks ago:
We met with a nurse-practioner on the last day of chemo cycle 4, after Toby’s sodium levels were found to be dangerously low. I asked Angela why Toby’s fluids couldn’t be upped to the 9% sodium bags instead of the standard 5% sodium solution. Angela explained that high levels of sodium were also dangerous. She said, “When levels are too high, he might hold onto too much liquid. We need him to be able to release extra fluid, not hold onto it.” Toby was quietly inspecting the photos on the back wall. As we left the room and started down the long hall towards the elevator bank, Stephen and I noticed that toby was walking very slowly, without holding onto his IV pole or our hands. He seemed a little shaky and so I bent down in front of him and asked him if he didn’t want to use his pole buddy as a support. His lower lip quivered as he said, “No mommy, I don’t want to hold onto anything because then my sodium levels will be too high.” And then we saw the tears rolling quietly down his little face.
*******
My sweet Toby, who chants numbers in his sleep and charms the medical teams on their rounds, who laughs at fart sounds and can remember the lyrics to every song he’s ever heard… Toby, who can speak in a southern drawl, just for effect… Toby, child of mine, your daddy and I talk about you when you’re asleep and we repeat the amazing things you say and we laugh and shake our heads at the wonder of you. Welcome home sweetheart.
Love, mommy
And as the car got closer, sharing Court street with bicyclists and strollers, he said, “I’d like to spend a little time outside, mommy, and maybe after dinner we can go to that store for an orange-cream ice.” And then we arrived and he skipped across the threshold, delighting in each doorknob and light switch. And Randy’s cd was loaded and toby danced. And laughed.
And there were two strawberries and a pickle and three forkfuls of diced macaroni and cheese. And a bath and two stories. And chatter. And we saw that life is good.
*****
This is how toby falls asleep:
He turns on his side, extends his arm under his head, to reduce the weight on his neck, he sighs and then he whispers, “ten, eleven, twelve, thirteen, fourteen, fifteen, sixteen.”
This is how toby meditates when he feels pain:
“Toby, if you could have your very own elevator, what would it look like?”
“It would have bright green doors on the outside and when it opened, the inside would be pink and furry. And there would be music. And stars on the top. And it would go to all the floors.”
This is one thing that Toby did two weeks ago:
We met with a nurse-practioner on the last day of chemo cycle 4, after Toby’s sodium levels were found to be dangerously low. I asked Angela why Toby’s fluids couldn’t be upped to the 9% sodium bags instead of the standard 5% sodium solution. Angela explained that high levels of sodium were also dangerous. She said, “When levels are too high, he might hold onto too much liquid. We need him to be able to release extra fluid, not hold onto it.” Toby was quietly inspecting the photos on the back wall. As we left the room and started down the long hall towards the elevator bank, Stephen and I noticed that toby was walking very slowly, without holding onto his IV pole or our hands. He seemed a little shaky and so I bent down in front of him and asked him if he didn’t want to use his pole buddy as a support. His lower lip quivered as he said, “No mommy, I don’t want to hold onto anything because then my sodium levels will be too high.” And then we saw the tears rolling quietly down his little face.
*******
My sweet Toby, who chants numbers in his sleep and charms the medical teams on their rounds, who laughs at fart sounds and can remember the lyrics to every song he’s ever heard… Toby, who can speak in a southern drawl, just for effect… Toby, child of mine, your daddy and I talk about you when you’re asleep and we repeat the amazing things you say and we laugh and shake our heads at the wonder of you. Welcome home sweetheart.
Love, mommy
Monday, July 16, 2007
Back on the Inside
we're back in the hospital as of 3 am this morning because of a fever. toby is feeling pretty miserable, as are we. this will be his second course of high-impact antibiotics in a week. his weight is down again, so we may start TPN (nutrition via IV) tomorrow. his white blood cell counts are still at zero, so no discharge in the near future. i thought i would post some photos, in an attempt to lift our spirits.
thank you to all who continue to give us strength, comments, food, gifts and love.
thank you to all who continue to give us strength, comments, food, gifts and love.
Thursday, July 12, 2007
Altered States
Toby is beginning to read and one of his favorite activities is reciting the titles of books backwards. So “Clocks and More Clocks” becomes “Clocks More and Clocks.” 207th street becomes 70th-and-2nd street. Most kids go through this developmental stage of reversing language. The difference with Toby is that he engages in purposeful inversion. It amuses him to no end.
And I wonder whether he’s onto something. Backwards, backwards, our life seems so backwards. If only I could find some meaning in it.
These are the questions I asked Toby’s pediatrician in past years:
So, how’s he doing?
How tall? How many pounds?
What percentile is that?
When do we make an appt with the dentist?
Should we eliminate the bottle?
And these are the questions I asked Toby’s doctor last week:
Q: What is the tumor pathology?
A: neuroblastoma, adrenal gland; neuroblastoma in 32 of 34 excised lymph nodes.
Q: Do you have the results of the bone marrow aspirates yet?
A: 3 sites were negative, 1 was positive
Q: We noticed “foot drop” after the first few hours of chemo; is it permanent or reversible?
A: It “should” become less visible, although there might be nerve damage.
Q: What are the hva and vma levels now that the tumor has been removed? (hva/vma are metabolites secreted in urine and strong diagnostic markers for neuroblastoma)
A: Normal levels of VMA for Toby’s age are less than 10. Toby’s pre-surgery level was 223. HVA levels are normal when they’re lower than 22. Toby’s HVA was 269 prior to surgery. (this was the first time we actually heard these shocking numbers). Today his VMA is 9 and his HVA is 16.
Q: On the CT scan we notice that 3 rounds of chemo have had no effect on one of the lesions in Toby’s neck… it’s still almost 2 cm long.
A: We will see how it responds to 2 more cycles of chemo. If it’s still there, it might require another surgery and/or radiation to the neck area.
Q: How many of the 18-year-old graduates at last week’s MSKCC “commencement” were neuroblastoma survivors?
A: None.
And these are the questions I didn’t ask:
Q: How many pounds does Toby have to lose before you declare an emergency? Does he look transparent to you?
Q: How many disfigurements and losses do we have to accept as necessary and justified on this hellish road to “cure”? Does loss of hearing just not matter? What about sterility? Or growth loss due to radiation?
Q: Why do you have to poison these kids to within an inch of their lives before you can save them?
Q: Why do so many kids with neuroblastoma relapse?
Q: How can you do this to my child?
Q: Is Toby going to live or die?
Most days I feel like we are forced to ignore every normal impulse we have as parents and humans to fiercely protect Toby from danger, to shield him from pain, to keep him comfortable and safe and happy. Most days Toby and all children with cancer experience suffering and pain and discomfort and fear that no child should ever feel. I wish that this backwards existence would end for us and for them.
And I wonder whether he’s onto something. Backwards, backwards, our life seems so backwards. If only I could find some meaning in it.
These are the questions I asked Toby’s pediatrician in past years:
So, how’s he doing?
How tall? How many pounds?
What percentile is that?
When do we make an appt with the dentist?
Should we eliminate the bottle?
And these are the questions I asked Toby’s doctor last week:
Q: What is the tumor pathology?
A: neuroblastoma, adrenal gland; neuroblastoma in 32 of 34 excised lymph nodes.
Q: Do you have the results of the bone marrow aspirates yet?
A: 3 sites were negative, 1 was positive
Q: We noticed “foot drop” after the first few hours of chemo; is it permanent or reversible?
A: It “should” become less visible, although there might be nerve damage.
Q: What are the hva and vma levels now that the tumor has been removed? (hva/vma are metabolites secreted in urine and strong diagnostic markers for neuroblastoma)
A: Normal levels of VMA for Toby’s age are less than 10. Toby’s pre-surgery level was 223. HVA levels are normal when they’re lower than 22. Toby’s HVA was 269 prior to surgery. (this was the first time we actually heard these shocking numbers). Today his VMA is 9 and his HVA is 16.
Q: On the CT scan we notice that 3 rounds of chemo have had no effect on one of the lesions in Toby’s neck… it’s still almost 2 cm long.
A: We will see how it responds to 2 more cycles of chemo. If it’s still there, it might require another surgery and/or radiation to the neck area.
Q: How many of the 18-year-old graduates at last week’s MSKCC “commencement” were neuroblastoma survivors?
A: None.
And these are the questions I didn’t ask:
Q: How many pounds does Toby have to lose before you declare an emergency? Does he look transparent to you?
Q: How many disfigurements and losses do we have to accept as necessary and justified on this hellish road to “cure”? Does loss of hearing just not matter? What about sterility? Or growth loss due to radiation?
Q: Why do you have to poison these kids to within an inch of their lives before you can save them?
Q: Why do so many kids with neuroblastoma relapse?
Q: How can you do this to my child?
Q: Is Toby going to live or die?
Most days I feel like we are forced to ignore every normal impulse we have as parents and humans to fiercely protect Toby from danger, to shield him from pain, to keep him comfortable and safe and happy. Most days Toby and all children with cancer experience suffering and pain and discomfort and fear that no child should ever feel. I wish that this backwards existence would end for us and for them.
Wednesday, July 11, 2007
cancer is a rollercoaster
a quick post to let you know that, unbelievably, we are at home in brooklyn, after being discharged at 6 pm today. right now the home health care nurse is in our kitchen, after hooking toby up to IV antibiotics that will run for an hour, until 11 pm. tomorrow morning it will be my turn to play nurse. and friday, we'll be back at the hospital outpatient clinic for transfusions.
in short, the attending doc questioned whether the hospital was a safe environment for toby, given that he's already fighting off a pretty rare bacteria called aerococcus viridans. quite a few of the children on the 9th floor have various respiratory infections, and though toby's counts have hit zero, this doc felt he would be better off at home. of course there are risks this way too, but we are praying for no fevers or further infections.
toby is neutropenic, so full-scale germ alert is on again. we will not be able to have any guests until toby's counts come back up, hopefully within a week or so. thanks to all who contacted us following yoram's awesome post of a couple of days ago. we want you to visit, but will need to postpone until it's safe.
tomorrow yoni turns 15 (!). we are grateful to be able to celebrate with our little family together.
love, mooki + stephen
in short, the attending doc questioned whether the hospital was a safe environment for toby, given that he's already fighting off a pretty rare bacteria called aerococcus viridans. quite a few of the children on the 9th floor have various respiratory infections, and though toby's counts have hit zero, this doc felt he would be better off at home. of course there are risks this way too, but we are praying for no fevers or further infections.
toby is neutropenic, so full-scale germ alert is on again. we will not be able to have any guests until toby's counts come back up, hopefully within a week or so. thanks to all who contacted us following yoram's awesome post of a couple of days ago. we want you to visit, but will need to postpone until it's safe.
tomorrow yoni turns 15 (!). we are grateful to be able to celebrate with our little family together.
love, mooki + stephen
Monday, July 9, 2007
July 9th update
With the exception of a very brief, single day off late last week, Toby has been hospitalized now going on two weeks. During this time he has had surgery, followed almost immediately by a fourth cycle of chemo. For the past several days Toby has been back at Sloan because of a bloodstream infection caused by a bacteria. In addition to fighting neuroblastoma cells, the chemo that Toby gets cause his normal cells that fight infection to plummet to low levels, this in turn predisposes him to potentially life-threatening infections. Because bacterial bloodstream infections can be so dangerous, they are treated with i.v. antibiotics (usually 10-14 days), intially as an inpatient and then once under control, continued as an outpatien at home. Unfortunately, because Toby just completed chemo last week, his blood counts, especially the cells that fight off infection, are dropping and soon will be nonexistent. What this means is that it's unsafe to send him home (even on i.v. antibiotics) and that he'll have to remain hospitalized until his "counts bottom out" (hit zero) and then recover. Typically this takes about two weeks from the start of chemo to happen (in other words, Toby, Mooki, and Stephen are potentially looking at a month-long hospital stay.
Understandably, the three of them are frustrated, angry, and at their wits end. Mooki, much more eloquent and direct than I put it as, "we're imprisoned." Boredom only makes matters worse. How many times can Toby be expected to be uplifted by the prospect of another "tour of the unit."
Randy came by for music yesterday giving Toby a chance to experience something fun and different which he loves.
The upcoming days (weeks) will undoubetdly be difficult and trying for Toby and family. This will be aggravated even more by the fact that like most kids, as Toby's counts continue to drop, he'll have less energy, feel crappy, and likely will tend to withdraw. That being said, it would be great if any of you "Toby entertainers" are able to make a visit to Sloan to cheer him up. Please e-mail Mooki if you can make it to schedule a time.
A personal request, Toby isn't the only one who could benefit from some time with friends. For the past two and a half months, Mooki and Stephen's existence has largely been relegated to extremely long and stressful hospital stays. They take turns "sleeping" at the hospital on a fold-out chair and when they do get home every other night, they often collapse due to exhaustion and anxiety. Many of you have already visited, brought food, donated blood, shopped, organized, chauferred, etc... We are truly grateful. The road is long (if Toby's treatment goes as expected, it should last just shy of 600 days); during this current crisis, please try to stop by the hospital (e-mail Mooki for an appropriate time) so that at the very least, Stephen and Mooki can live vicariously through you.
Thank you,
Yoram
Understandably, the three of them are frustrated, angry, and at their wits end. Mooki, much more eloquent and direct than I put it as, "we're imprisoned." Boredom only makes matters worse. How many times can Toby be expected to be uplifted by the prospect of another "tour of the unit."
Randy came by for music yesterday giving Toby a chance to experience something fun and different which he loves.
The upcoming days (weeks) will undoubetdly be difficult and trying for Toby and family. This will be aggravated even more by the fact that like most kids, as Toby's counts continue to drop, he'll have less energy, feel crappy, and likely will tend to withdraw. That being said, it would be great if any of you "Toby entertainers" are able to make a visit to Sloan to cheer him up. Please e-mail Mooki if you can make it to schedule a time.
A personal request, Toby isn't the only one who could benefit from some time with friends. For the past two and a half months, Mooki and Stephen's existence has largely been relegated to extremely long and stressful hospital stays. They take turns "sleeping" at the hospital on a fold-out chair and when they do get home every other night, they often collapse due to exhaustion and anxiety. Many of you have already visited, brought food, donated blood, shopped, organized, chauferred, etc... We are truly grateful. The road is long (if Toby's treatment goes as expected, it should last just shy of 600 days); during this current crisis, please try to stop by the hospital (e-mail Mooki for an appropriate time) so that at the very least, Stephen and Mooki can live vicariously through you.
Thank you,
Yoram
Saturday, July 7, 2007
and it's not over
i just got a call (7 am saturday) that toby's cultures are positive for bacteria. we are being admitted this morning. i'll keep you updated.
Friday, July 6, 2007
Neuroblastoma Sucks
I have to be honest: the last week has been the most difficult since diagnosis and has left us feeling battered, despairing and terribly sad. Until now I’ve steered clear of military language when describing the disease and treatment. I am uncomfortable with the language of violence. I do not feel like glorifying our situation by using words that falsely ennoble, rather than words that simply lay things clear. I guess I’m a linguistic pacifist. But this week makes me feel like bursting forth with every military metaphor I can dream up. It has been war this week. And our little Toby is on the front lines.
Every night I’ve wanted to write an update, naming and witnessing the day, the medicines, the pain, the loss, the grief. And every night, after an 18-hour day, I’ve realized that there are no words on earth to describe what Toby is enduring and how deeply sad it makes us feel.
We have finished cycle 4 of chemo, one more notch on our collective belt, as we march inexorably toward the next grueling phase of neuroblastoma treatment. In a way this cycle was oddly familiar… I guess we’re already old hands at cancer. But this time we hit a lot of bumps that made us realize yet again how very little control we have over this disease. This was the first cycle that Toby spent in bed. The recent surgery to remove the tumor has taken a hard toll on his body and spirits. Usually Toby spends his time in the hospital in high gear, pushing his favorite piece of furniture, “blue cubie” down the halls, while pretending to be a policeman. Or he creates elaborate scenarios in the playroom with ninja turtles, dumptrucks and alphabet blocks. Or he chats up the nurses and tries out the equipment. Or he acts as ersatz elevator operator, asking visitors what floor they need. Or he does his “homework” on the computer and listens to books on tape. This week was different: he showed little interest in anything but the television and spent every day unhappy and wiped out.
This was our week:
Sunday at midnight, when Toby was still inpatient, we were told that he would start his fourth cycle of chemo the following morning. His IV fluids were increased to 60 mls an hour, readying him for the toxic effects of cyclophosphamide. By 10 am the chemo orders had still not been written. The surgical and neuroblastoma teams came on rounds and the nurses continued to monitor Toby’s fluctuating weight and stomach circumference, in effect waiting for the old fluid to drain while pumping him up with new fluid in preparation for chemo. We took longer walks around the unit and tried to gage Toby's pain level. By noon we were told that we could go home and begin chemo as outpatients on Tuesday. Good news, since starting chemo late in the day guarantees a late start for all ensuing days. We packed all our stuff: the rumpled clothes, diversionary toys, and untouched Toby snacks that had followed us from the surgical floor on Wednesday morning, to the ambulance, the Cornell ICU, the ambulance again, the POU at MSKCC, and finally to the inpatient unit. Five minutes later, word came that one of the docs had changed her mind about letting us go home. So we unpacked and waited for the chemo to arrive. It never did, and at 6 pm I was lobbying hard for one night of semi-normalcy and a discharge. Many, many conversations later we found ourselves in a car headed back to Brooklyn. Never mind that we had to be back at the hospital at 7 am, it felt like the most delicious of escapes to have one night at home.
Tuesday, and things had barely changed. By noon the chemo meds had still not shown up. Cytoxan is a 6 hour drip, so we knew we were in for a long day. Worse though, was the obvious pain Toby was feeling. Our regular nurses were both working in other parts of the unit and I spent the better part of the morning begging for pain relief for my child. I repeated the history, spoke to at least 5 different doctors and nurses and nurse practioners, explained the circumstances, all the while watching Toby quietly clamp his jaws and bear down. He couldn’t look at anything, but kept darting his eyes from me to the floor, to the walls and back again. No smiles, no conversation. He never complained, never cried, and so the new staff just couldn’t believe that he was really experiencing pain. I was the one who cried and finally convinced them that Toby doesn’t exhibit the usual signs of pain. Stephen and I have quickly learned that he generally gets very quiet and withdrawn. It was only when Toby pointed to the saddest face on the pain chart (#1 is a smiley face, #5 has no expression, and #10 has a big frown and 2 tears) that things began to change. If I could have I would have stormed the pharmacy to give him a moment of relief. But finally the order was written for morphine and within ½ an hour he was a different person, more comfortable and willing to be quietly engaged.
On Wednesday we gave Toby his first “bath” since surgery. As I’ve written before, a neuroblastoma bath consists of wrapping Toby’s torso with yards of saran wrap to protect his broviac central line, which juts out of the center of his chest. We fill the tub with about an inch of water, remind him not to splash and quickly clean him up. Wednesday’s bath was further complicated by the 20 lb backpack attached to Toby’s tubes, as well as the countless bandages all over his body.
It was our first chance to see our son fully naked in a week. And it wasn’t pretty. Toby’s entire lower back, from ribs to buttocks, is covered with queasy-looking, evil black-purple bruises. He has both old and new entry point scabs where the bone marrows were performed. There is a large, 10-inch long dressing that curves around his lower right side, and directly beneath is a puffy gauze pad that covers the site of the removed chest tube. In the middle of his back is an area where some skin was accidentally removed, probably due to excessive use of tape. And there are multiple scratches and abrasions where the ekg leads and catheter were adhered. I looked at my child and wanted to weep. If this is not a body engaged in battle, I don’t know what is.
Thursday promised to be a shorter day and we found ourselves at home while it was still light outside. Too tired to do much of anything we all sat on the couch watching Toby’s favorite cartoons and acting passably human. Stephen said that he felt like he had been sleeping in a bus terminal for a month. I laughed in recognition and then Toby spiked a fever. Two hours after we left, we found ourselves back at the hospital, this time in urgent care (MSKCC”s equivalent of an emergency room). Toby had blood cultures drawn, was monitored, and received a dose of intravenous antibiotic at 10 pm. And by midnight we were back at home, with the alarm set for 6 am the next morning.
And today, we realized that Toby’s eyebrows are gone.
I really don't mean to complain... I hope you'll forgive the rant.
Through this difficult week, we have been blessed by many acts of kindness. The blood transfusion Toby received today was direct from a donor. Delicious, lovingly-prepared food has been delivered every night. Drivers have ferried us back and forth from Brooklyn to the Upper East Side, even through insane july 4th traffic. Nurses have taken excellent, loving care of Toby. Doctors have answered our many, many questions with patience and candor. Hospital staff have gone out of their way to be helpful and understanding. We have been unable to say “thank you” to all of you, but please know that your acts do not go unnoticed. We are so grateful for your continued support of our family.
And speaking of family, Stephen’s wonderful sister Anna travelled from North Carolina to spend the week with us. Her presence, attention and love made the days bearable. Best of all, she confirmed our feeling that Toby is just a flat-out amazing little boy. He’s handling this situation with incredible pluck and strength. I have so many Toby anecdotes to share with you: the joyful things he says, the way he interacts with the nurses and docs, the jokes he makes and the way he sees the world. But it’s getting late and I’m nodding at the keyboard. I’ll tell you all about Toby tomorrow.
Love, mooki + stephen
Every night I’ve wanted to write an update, naming and witnessing the day, the medicines, the pain, the loss, the grief. And every night, after an 18-hour day, I’ve realized that there are no words on earth to describe what Toby is enduring and how deeply sad it makes us feel.
We have finished cycle 4 of chemo, one more notch on our collective belt, as we march inexorably toward the next grueling phase of neuroblastoma treatment. In a way this cycle was oddly familiar… I guess we’re already old hands at cancer. But this time we hit a lot of bumps that made us realize yet again how very little control we have over this disease. This was the first cycle that Toby spent in bed. The recent surgery to remove the tumor has taken a hard toll on his body and spirits. Usually Toby spends his time in the hospital in high gear, pushing his favorite piece of furniture, “blue cubie” down the halls, while pretending to be a policeman. Or he creates elaborate scenarios in the playroom with ninja turtles, dumptrucks and alphabet blocks. Or he chats up the nurses and tries out the equipment. Or he acts as ersatz elevator operator, asking visitors what floor they need. Or he does his “homework” on the computer and listens to books on tape. This week was different: he showed little interest in anything but the television and spent every day unhappy and wiped out.
This was our week:
Sunday at midnight, when Toby was still inpatient, we were told that he would start his fourth cycle of chemo the following morning. His IV fluids were increased to 60 mls an hour, readying him for the toxic effects of cyclophosphamide. By 10 am the chemo orders had still not been written. The surgical and neuroblastoma teams came on rounds and the nurses continued to monitor Toby’s fluctuating weight and stomach circumference, in effect waiting for the old fluid to drain while pumping him up with new fluid in preparation for chemo. We took longer walks around the unit and tried to gage Toby's pain level. By noon we were told that we could go home and begin chemo as outpatients on Tuesday. Good news, since starting chemo late in the day guarantees a late start for all ensuing days. We packed all our stuff: the rumpled clothes, diversionary toys, and untouched Toby snacks that had followed us from the surgical floor on Wednesday morning, to the ambulance, the Cornell ICU, the ambulance again, the POU at MSKCC, and finally to the inpatient unit. Five minutes later, word came that one of the docs had changed her mind about letting us go home. So we unpacked and waited for the chemo to arrive. It never did, and at 6 pm I was lobbying hard for one night of semi-normalcy and a discharge. Many, many conversations later we found ourselves in a car headed back to Brooklyn. Never mind that we had to be back at the hospital at 7 am, it felt like the most delicious of escapes to have one night at home.
Tuesday, and things had barely changed. By noon the chemo meds had still not shown up. Cytoxan is a 6 hour drip, so we knew we were in for a long day. Worse though, was the obvious pain Toby was feeling. Our regular nurses were both working in other parts of the unit and I spent the better part of the morning begging for pain relief for my child. I repeated the history, spoke to at least 5 different doctors and nurses and nurse practioners, explained the circumstances, all the while watching Toby quietly clamp his jaws and bear down. He couldn’t look at anything, but kept darting his eyes from me to the floor, to the walls and back again. No smiles, no conversation. He never complained, never cried, and so the new staff just couldn’t believe that he was really experiencing pain. I was the one who cried and finally convinced them that Toby doesn’t exhibit the usual signs of pain. Stephen and I have quickly learned that he generally gets very quiet and withdrawn. It was only when Toby pointed to the saddest face on the pain chart (#1 is a smiley face, #5 has no expression, and #10 has a big frown and 2 tears) that things began to change. If I could have I would have stormed the pharmacy to give him a moment of relief. But finally the order was written for morphine and within ½ an hour he was a different person, more comfortable and willing to be quietly engaged.
On Wednesday we gave Toby his first “bath” since surgery. As I’ve written before, a neuroblastoma bath consists of wrapping Toby’s torso with yards of saran wrap to protect his broviac central line, which juts out of the center of his chest. We fill the tub with about an inch of water, remind him not to splash and quickly clean him up. Wednesday’s bath was further complicated by the 20 lb backpack attached to Toby’s tubes, as well as the countless bandages all over his body.
It was our first chance to see our son fully naked in a week. And it wasn’t pretty. Toby’s entire lower back, from ribs to buttocks, is covered with queasy-looking, evil black-purple bruises. He has both old and new entry point scabs where the bone marrows were performed. There is a large, 10-inch long dressing that curves around his lower right side, and directly beneath is a puffy gauze pad that covers the site of the removed chest tube. In the middle of his back is an area where some skin was accidentally removed, probably due to excessive use of tape. And there are multiple scratches and abrasions where the ekg leads and catheter were adhered. I looked at my child and wanted to weep. If this is not a body engaged in battle, I don’t know what is.
Thursday promised to be a shorter day and we found ourselves at home while it was still light outside. Too tired to do much of anything we all sat on the couch watching Toby’s favorite cartoons and acting passably human. Stephen said that he felt like he had been sleeping in a bus terminal for a month. I laughed in recognition and then Toby spiked a fever. Two hours after we left, we found ourselves back at the hospital, this time in urgent care (MSKCC”s equivalent of an emergency room). Toby had blood cultures drawn, was monitored, and received a dose of intravenous antibiotic at 10 pm. And by midnight we were back at home, with the alarm set for 6 am the next morning.
And today, we realized that Toby’s eyebrows are gone.
I really don't mean to complain... I hope you'll forgive the rant.
Through this difficult week, we have been blessed by many acts of kindness. The blood transfusion Toby received today was direct from a donor. Delicious, lovingly-prepared food has been delivered every night. Drivers have ferried us back and forth from Brooklyn to the Upper East Side, even through insane july 4th traffic. Nurses have taken excellent, loving care of Toby. Doctors have answered our many, many questions with patience and candor. Hospital staff have gone out of their way to be helpful and understanding. We have been unable to say “thank you” to all of you, but please know that your acts do not go unnoticed. We are so grateful for your continued support of our family.
And speaking of family, Stephen’s wonderful sister Anna travelled from North Carolina to spend the week with us. Her presence, attention and love made the days bearable. Best of all, she confirmed our feeling that Toby is just a flat-out amazing little boy. He’s handling this situation with incredible pluck and strength. I have so many Toby anecdotes to share with you: the joyful things he says, the way he interacts with the nurses and docs, the jokes he makes and the way he sees the world. But it’s getting late and I’m nodding at the keyboard. I’ll tell you all about Toby tomorrow.
Love, mooki + stephen
Tuesday, July 3, 2007
chemo cycle 4
we have just returned from a 12-hour day, filled with every possible frustration and marked by constant pain. toby has completed day 1 of chemo cycle 4. he's sleeping fitfully upstairs and i'll wake him in a few minutes to pee and get some anti-nausea medication. he is hooked up to a huge backpack of chemo bags and fluid that sits on the floor near his bed. one of the chemo drugs can cause bladder bleeding and kidney failure, so we have to wake toby throughout the night to empty his bladder. it was determined today that toby cannot metabolize codeine, so the pain meds we were discharged with last night did not work to keep him even nominally comfortable. he was switched to morphine today, but still seems very, very tender and miserable. i want to give you all the details, but am so exhausted that it will have to wait until after chemo is over this weekend.
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