we have taken the next step on toby's post-surgical journey and moved down the hall to the regular inpatient unit at mskcc. today the chest tube was removed and toby drank 2 bottles of milk, a cup of chocolate ensure, some strawberries and a hard-boiled egg. he didn't touch the french toast.
he's still puffy and his weight check today confirmed that he's retaining more than 5 pounds of liquid. we hope that he'll be more comfortable tomorrow. most likely he will be weaned from the iv pain meds on sunday and start oral morphine instead. dr. kushner and dr. laquaglia conferred and if all goes well over the next days, toby will start his 4th cycle of chemo on monday or tuesday.
we received a whopping 146 comments after my last post. and we have read them all, three times over. we are blown away by your love, friendship and support. your words have given us so much hope and the strength to carry on. thank you.
love, mooki + stephen
Saturday, June 30, 2007
Friday, June 29, 2007
PICU, POU, French toast
Post-op day #2
Toby is tough.
As I spent the past several days at my nephew's side I have become increasingly convinced of this almost four year-old's inner strength & resolve & repeatedly found myself asking where his strength comes from.
Within less than 24 hours following surgery Toby was breathing on his own, with only a little oxygen to help keep his "levels" appropriately high. When I arrived to the PICU this morning, Toby's NG tube was out, leaving "only" a chest tube, an arterial line (an "IV" directly inserted into the artery), an epidural & urinary catheter. The latter was particularly bothersome to Toby, but as long as the epidural was in the catheter had to stay. Even more difficult for Toby were his hunger pangs. The last time he had had anything to eat or drink was Tuesday night & despite his stomach having yet to fully recover, all Toby could
focus on was "french toast." Seeing & listening to Toby, his face creased in a half grimace, his torso wrapped in bandages, repeat time & again, "I want french toast," "I want french toast" was surreal. For Stephen & Mooki this was obviously heart wrenching. After their numerous attempts to explain, cajole, & distract Toby failed miserably, the only thing more present
then Toby's persistent pleas were the pained expressions on their faces, prompting Stephen to mutter, "what do we tell him now?"
As a doctor, I tried to remain objective & explain to Mooki the necessity of a graded introduction of food, starting first with ice chips, then clears (liquids that can be seen through like apple juice), followed by a soft, bland diet, & finally a regular diet so as not to overwhelm Toby's gut, but as a brother & uncle, seeing Mooki's exasperated & pained expression made me feel like running down to the cafeteria, finding the biggest piece of french toast with lots of syrup, & giving it to Toby no matter the consequences. I wanted to simultaneously feed Toby & hug both Mooki & Stephen, but instead I remained cool & logical.
In the midst of Toby's french toast tirade, we were informed that Toby was being transferred back to the POU (pronounced "poo") pediatric observation unit at Sloan. Toby's quick recovery meant that he no longer required intensive care.
Toby's toughness was tested again during the transfer to the POU. An hour and a half into the transfer, Toby was literally writhing in pain because his epidural had fallen out meaning that he was getting no pain medication. Toby was given a
nice big dose of morphine & within several hours, with epidural & urinary catheter out, his stomach grumbling (indicating greater awakening than his uncle the doctor credited him capable of); Toby was drinking milk (not a clear) & walking the halls of Sloan - tough!
Kids with cancer & their families face endless challenges like Toby, Mooki, & Stephen endured today. These challenges test a familiy's resolve, their faith, & force them to repeatedly reinvent themselves. Mooki, Stephen, Yoni, & Toby are all tough, but without the continued support of their friends & family their resolve is not nearly as strong. Please continue being the true friends & support group that Toby & his family have come so much to depend & rely on.
Yoram
Toby is tough.
As I spent the past several days at my nephew's side I have become increasingly convinced of this almost four year-old's inner strength & resolve & repeatedly found myself asking where his strength comes from.
Within less than 24 hours following surgery Toby was breathing on his own, with only a little oxygen to help keep his "levels" appropriately high. When I arrived to the PICU this morning, Toby's NG tube was out, leaving "only" a chest tube, an arterial line (an "IV" directly inserted into the artery), an epidural & urinary catheter. The latter was particularly bothersome to Toby, but as long as the epidural was in the catheter had to stay. Even more difficult for Toby were his hunger pangs. The last time he had had anything to eat or drink was Tuesday night & despite his stomach having yet to fully recover, all Toby could
focus on was "french toast." Seeing & listening to Toby, his face creased in a half grimace, his torso wrapped in bandages, repeat time & again, "I want french toast," "I want french toast" was surreal. For Stephen & Mooki this was obviously heart wrenching. After their numerous attempts to explain, cajole, & distract Toby failed miserably, the only thing more present
then Toby's persistent pleas were the pained expressions on their faces, prompting Stephen to mutter, "what do we tell him now?"
As a doctor, I tried to remain objective & explain to Mooki the necessity of a graded introduction of food, starting first with ice chips, then clears (liquids that can be seen through like apple juice), followed by a soft, bland diet, & finally a regular diet so as not to overwhelm Toby's gut, but as a brother & uncle, seeing Mooki's exasperated & pained expression made me feel like running down to the cafeteria, finding the biggest piece of french toast with lots of syrup, & giving it to Toby no matter the consequences. I wanted to simultaneously feed Toby & hug both Mooki & Stephen, but instead I remained cool & logical.
In the midst of Toby's french toast tirade, we were informed that Toby was being transferred back to the POU (pronounced "poo") pediatric observation unit at Sloan. Toby's quick recovery meant that he no longer required intensive care.
Toby's toughness was tested again during the transfer to the POU. An hour and a half into the transfer, Toby was literally writhing in pain because his epidural had fallen out meaning that he was getting no pain medication. Toby was given a
nice big dose of morphine & within several hours, with epidural & urinary catheter out, his stomach grumbling (indicating greater awakening than his uncle the doctor credited him capable of); Toby was drinking milk (not a clear) & walking the halls of Sloan - tough!
Kids with cancer & their families face endless challenges like Toby, Mooki, & Stephen endured today. These challenges test a familiy's resolve, their faith, & force them to repeatedly reinvent themselves. Mooki, Stephen, Yoni, & Toby are all tough, but without the continued support of their friends & family their resolve is not nearly as strong. Please continue being the true friends & support group that Toby & his family have come so much to depend & rely on.
Yoram
Thursday, June 28, 2007
Post-op day #1
Hi Everyone,
I'm writing from Toby's bedside at Cornell. Toby had a fitful night to say the least. For whatever reason, the sedation medicines weren't working & as a result Toby was awake & fighting to have his breathing tube out. Neither he nor Mooki got much sleep.
Fortunately, this morning Toby was breathing on his own & the tube was pulled out! Right now he's getting a little supplemental oxygen through some nasal prongs.
The epidural seems to be controlling his pain & now both he & Mooki are taking a nap. Earlier, Toby was watching some DVDs & interacting with both Mooki & Stephen. He's pretty puffy from all the IV fluids he got while in the operating room, which should come off in the next day or two.
Toby doesn't like his NG tube that has to stay in until his bowel recovers from the anesthesia which likely won't be for a couple more days. He's been a real trooper despite all he's been through.
This moning, Jessica came by to donate platelets & dropped off some food & when Stephen, Merci, & I returned home late last night, we were greeted by another amazing dinner - thank you all.
Yoram
I'm writing from Toby's bedside at Cornell. Toby had a fitful night to say the least. For whatever reason, the sedation medicines weren't working & as a result Toby was awake & fighting to have his breathing tube out. Neither he nor Mooki got much sleep.
Fortunately, this morning Toby was breathing on his own & the tube was pulled out! Right now he's getting a little supplemental oxygen through some nasal prongs.
The epidural seems to be controlling his pain & now both he & Mooki are taking a nap. Earlier, Toby was watching some DVDs & interacting with both Mooki & Stephen. He's pretty puffy from all the IV fluids he got while in the operating room, which should come off in the next day or two.
Toby doesn't like his NG tube that has to stay in until his bowel recovers from the anesthesia which likely won't be for a couple more days. He's been a real trooper despite all he's been through.
This moning, Jessica came by to donate platelets & dropped off some food & when Stephen, Merci, & I returned home late last night, we were greeted by another amazing dinner - thank you all.
Yoram
Surgery Update
Hello All,
Mooki, Stephen, & I just spent several minutes with Dr. LaQuaglia, Toby's surgeon.Toby is now officially "post-op," after having undergone a "gross total resection." Between the bone marrow biopsies & surgery, the entire operation lasted about six hours. Dr. LaQuaglia was able to remove the primary adrenal tumor, which was surrounded by a capsule relatively easily. There were two additional large "masses" above & below the kidney that he also took out. The hard work of dissecting away tissue searching for cancer-laden lymph nodes followed & Dr. LaQuaglia said that he was "able to take out everything he found."The blood vessels to Toby's kidney & the kidney itself are okay.
Toby didn't bleed too much (400 cc) & on the whole, it sounds like things went as well as can be expected.What's in store for Toby now is that he's to be transferred to the PICU (pediatric ICU) at Cornell while he has a breathing tube & is on a respirator which will breath for him. This will probably be for a couple of days. He also has a chest tube (a tube which allows excess fluid to drain from the surgical bed), an NG tube (nasogastric tube) to keep his belly decompressed, & an epidural IV for pain control.
Once Toby's back at Sloan & recovered, he'll resume chemo (potentially as early as next week) for at least 2 more cycles followed by radiation & antibody therapy.
I'd like to thank Heather, Andy & Rachel, Carrie, Sonia, Monique, Fran, Mirm, Shana, Barbara, Martha, Jonathan, & Merci, all who spent time with Mooki & Stephen throughout this long & trying day. They talked, fed, & most of all provided a much needed & welcome distraction - thank you all so much.
I'll try to send another update in the upcoming days.
Yoram
Mooki, Stephen, & I just spent several minutes with Dr. LaQuaglia, Toby's surgeon.Toby is now officially "post-op," after having undergone a "gross total resection." Between the bone marrow biopsies & surgery, the entire operation lasted about six hours. Dr. LaQuaglia was able to remove the primary adrenal tumor, which was surrounded by a capsule relatively easily. There were two additional large "masses" above & below the kidney that he also took out. The hard work of dissecting away tissue searching for cancer-laden lymph nodes followed & Dr. LaQuaglia said that he was "able to take out everything he found."The blood vessels to Toby's kidney & the kidney itself are okay.
Toby didn't bleed too much (400 cc) & on the whole, it sounds like things went as well as can be expected.What's in store for Toby now is that he's to be transferred to the PICU (pediatric ICU) at Cornell while he has a breathing tube & is on a respirator which will breath for him. This will probably be for a couple of days. He also has a chest tube (a tube which allows excess fluid to drain from the surgical bed), an NG tube (nasogastric tube) to keep his belly decompressed, & an epidural IV for pain control.
Once Toby's back at Sloan & recovered, he'll resume chemo (potentially as early as next week) for at least 2 more cycles followed by radiation & antibody therapy.
I'd like to thank Heather, Andy & Rachel, Carrie, Sonia, Monique, Fran, Mirm, Shana, Barbara, Martha, Jonathan, & Merci, all who spent time with Mooki & Stephen throughout this long & trying day. They talked, fed, & most of all provided a much needed & welcome distraction - thank you all so much.
I'll try to send another update in the upcoming days.
Yoram
Monday, June 25, 2007
Surgery + God
We are less than 36 hours away from Toby's surgery.
Last week we met with our surgeon, Dr. Laquaglia, who impressed us with his warmth, directness and knowledge. He showed us some pretty amazing and sobering 3-d scans of Toby's body, with the large tumor immediately visible in the lower right abdomen. The mass encases several blood vessels and arteries and butts up against the vena cava (the main vein in the body) on two sides. It also completely surrounds a major artery to the right kidney, which puts that kidney at risk. Dr. Laquaglia termed the surgery "life-threatening," but reminded us that it reduces the risk of cancer cells growing back at that location, something that chemotherapy alone cannot do. Bcause of the tumor's location, it will need to be "peeled away" bit by bit from the surrounding areas. There's no margin for error. We asked Dr. L how long the surgery would last and he replied "as long as it takes." He believes he can remove the entire tumor and is committed to doing so, having performed 690 similar procedures over the last 10 years. He really is the best surgeon for neuroblastoma and we completely trust him.
Following the surgery, Toby will most likely be on a ventilator for 24-72 hours and will be in the ICU at Cornell medical center, across the street from mskcc, for observation. He will receive an epidural during the operation, to lessen abdominal pain. He will have lots of tubes and ivs as well as a catheter. We are told that he will be kept sedated until the breathing tube comes out.
These pre-surgery days have been very frightening and I’ve gone searching for neuroblastoma blogs (yes, they exist!) to help my anxiety. I’ve been continuously struck by how much faith these parent/writers have. Their children are going through a living hell... in tremendous pain or in incredibly debilitating circumstances. Hair, eyebrows and eyelashes have fallen out, immune systems are one small step away from collapse, weight is at skeletal levels, small bodies bear the full force of unimaginable quantities of poisons. and yet the parents manage to retain a belief in God, a sense that the world is good and just.
I myself have been having a hard time with God lately. When my parents were here, my father bought me a slim volume entitled "Yosl Rakover talks to God," which he inscribed with his customary passion and elegance: "For Michal, our beloved daughter, in dire need, a heart-tearing shout to the hiding God. With unconditional love, from Mom and Dad, Brooklyn 4 May 2007."
I've read the book twice now and wish that i could say that I find it helpful or inspiring. Perhaps I don't understand the nuances at play. And I admit that I haven't been able to muddle through the commentaries by Emanuel Levinas and Leon Weiseltier... perhaps those would shed some light. The narrator of Kolitz's story is just hours away from his own death. He has lost his wife and all 6 of his children in horrifying circumstances. His comrades in the warsaw ghetto have died around him during the previous night's fighting. Alone, he wrestles with God and proclaims his unyielding faith, even though God has veiled his face and turned away from the suffering of millions. There are passages of stark beauty, but much of the prose is tied up with vengeance and a strange paean to the nobility of suffering. Kolitz passionately believes in God, even though and despite the fact that God is absent. I have always loved this inverted kind of thinking, have felt myself pulled along and buoyed by its logic. But it hasn't moved me this time. It isn't easy to have unshakeable belief when my innocent, beautiful child is in the throes of a life-threatening disease. I'm sorry Daddy, but your inscription is the best part of the book.
I've been luckier with another small book, "When bad things happen to good people," by Rabbi Harold Kushner. Although the title rubs me the wrong way, it is most emphatically not pop-psychology, but instead a moving and elegant response to suffering.
I still feel that what is happening to Toby is tremendously unfair. I am scared almost every minute of every day, I worry endlessly, I ache for my child and I admit that I am angry at God. Yet I find great relief in Kushner’s idea that God is not responsible for human suffering, but can provide us with the strength to cope with our situation.
Kushner writes, “I don’t know why my friend is sick and dying and in constant pain. From my religious perspective, I cannot tell him that God has His reasons for sending him this terrible fate, or that God must specially love him or admire his bravery to test him in this way. I can only tell him that the God I believe in did not send the disease and does not have a miraculous cure that He is withholding. But in a world in which we all possess immortal spirits in fragile and vulnerable bodies, the God I believe in gives strength and courage to those who, unfairly and through no fault of their own, suffer pain and the fear of death.”
Kushner has also introduced me to an incredibly powerful line of reasoning: at a certain point I can stop asking "why has this happened to me?" and move to "now that this has happened, what shall I do about it?" This is the kind of thinking that I embrace.
We ask that you believe, that you pray, that you give us strength and that you think of Toby on wednesday, as he undergoes the major, invasive and 10-hour surgery that will remove the tumor from his body. We are fearful, but determined and hopeful. Our little boy needs your thoughts and your love.
Also, if you are so inclined, please, please send us a comment on the blog. You simply don't know how important it is for us to read your words and wishes. It connects us to all of you in an immediate way that we find very reassuring. I have changed the settings so that you can comment (click on the blue comment link directly below this post) without needing a google account. Simply write your message and click on the orange "publish your comment" to post.
We thank you for your continued prayers, care and kindness.
love,
mooki and stephen
Wednesday, June 20, 2007
Important Blood Drive Needs!
Toby needs more blood products! Even without the surgery, he needs 2 or 3 units of blood and 2 or 3 of platelets every week. Right now he has one unit of whole blood and no platelets in his bank. And his needs will go up around his surgery, which is June 27. This means that we all need to make some time in the next week to get over to the hospital and donate. The donor room is open 7 days a week, and it only takes about an hour to give whole blood. Platelets take 2.5 hours and expire much faster, so if you have the time, please consider doing that.
I know that lots of people have tried to donate and been turned away for low iron. I am told by the Blood Donor rep at MSK that eating Total cereal for 2 weeks is guaranteed to get your iron levels where they need to be. So if you've been turned away but still want to give, get yourself some Total and try for next week.
The numbers to call to sign up to donate are:
CALL NOW!
If you need any help navigating the process, feel free to email me.
thanks
Jessica
I know that lots of people have tried to donate and been turned away for low iron. I am told by the Blood Donor rep at MSK that eating Total cereal for 2 weeks is guaranteed to get your iron levels where they need to be. So if you've been turned away but still want to give, get yourself some Total and try for next week.
The numbers to call to sign up to donate are:
Mary Thomas - 212-639-3335It's summer, and everyone is vacationing, relaxing, going away. Think how much more you will enjoy your vacation knowing that you did something so concrete to help Toby during this time of increased need.
Donor Room - 212-639-7648
CALL NOW!
If you need any help navigating the process, feel free to email me.
thanks
Jessica
Monday, June 18, 2007
Details
last week was a whirlwind, but we were rewarded with a 4-day weekend, our first extended break since treatment began on april 17. i can't quite believe that i've become accustomed to spending every monday, wednesday and friday at a cancer hospital, but it seems we can get used to anything, even the unthinkable. in a strange way, the triad of weekly visits is reassuring.
when ursula, toby's beloved nurse practitioner, told us that we didn't haveto return until monday, stephen and i blinked in surprise and mild panic. we realized that it would be impossible to reclaim a completely pre-disease weekend, but really tried to give toby a taste of normalcy, and found ourselves in the swings at the park, on a kiddie ride at coney island, at an outdoor table eating rice and beans, at the clinton street block party where we let the water from a fire hydrant run over toby's feet. and every minute we worried about him, wondering about his counts, eyeing the outcroppings of bruises on his legs, assessing the dark rings under his eyes, feeling his forehead for possible fever, washing his hands at every opportunity.
overall though, it was a lovely weekend and a much-needed respite. toby's energy level was good, with lots of outdoor activity in the mornings and quieter afternoons inside. we did go out for italian ice every evening, even in the midst of a rainstorm. and we moved today to our next sublet, which will take us through september 1, when we will need to move into a permanent rental. please let us know if you have any leads on a 3 br apartment with washer/dryer in park slope, cobble hill, carroll gardens, windsor terrace or surrounding nabes. we are very concerned about finding a place in time.
our temporary address is 66 1st place, brooklyn, ny 11231.
now, some details about last week:
on monday and tuesday toby received blood and platelets transfusions, from bags marked with small pink index cards. the cards are handwritten, in the style of old library catalogue cards and they let us know that this blood or those platelets were donated specifically for toby. due to privacy laws, the cards don't list the donor's name, but we have found out that more than 35 of you have come forward to donate for toby. we can't adequately express how powerful your actions are. it is indescribable seeing a friend's blood going directly into toby's body . thank you.
on tuesday morning, while on the way to toby's scheduled audiogram, i received a call telling us to report instead to the donor room, where toby's stem cells would be harvested during a 4-hour procedure. apparently, his white blood cell count was on the rise, after just two triple-strength doses of GCSF, the shot that stimulates wbc production. there's a small
window for collecting stem cells and the docs wanted to take advantage of the opportunity. toby had a surprisingly good time during the harvest, eating everything in sight and requesting pizza, peasoup, chips, icecream, muffins, yogurt and fruit salad. we haven't seen him eat so much in months.
his hemoglobin was very low during the procedure and while looking at all the pumps and tubes snaking out of his body and into the mainframe-sized machine, we couldn't imagine just how little blood he actually had circulating through his veins. late that evening we found out that 11 million stem cells were harvested (they needed a minimum of 7 million), which meant that we didn't need to return for another harvest.
wednesday morning toby drank his ct contrast dye/fluid and barely complained of hunger, even though he wasn't allowed anything by mouth until after the ct at 2 pm. he was cold and tired that afternoon, but still managed to simultaneously stuff 2 handfuls of pirate booty and 4 strawberries into his mouth. we'll hopefully have more details on the ct results this coming week. toby's audiogram has been rescheduled for tomorrow.
*************
i wanted to tell you how toby's play has changed over the last two months. he has created new games that don't require much movement and that use the bed as an imaginarium. on tired days we spend many hours lying down under the covers, as toby pretends to turn me into a cat, mouse, or bunny. he then proceeds to tell the "animal" exactly what he's feeling. i don't say much during these sessions, meowing or purring instead of using too many words. and this gives toby the space he needs to work through his new reality. he hugs and kisses the "cat" continuously, all the while explaining the different effects of medicine, or the way a g-shot feels. sometimes he asks the "cat" if her throat hurts and then says she has to take "zofran" (in actuality an anti-nausea medication). or he questions whether her stomach hurts and tells her very seriously that the "chemo medicine" will help (this one absolutely breaks my heart). occasionally he wrestles the "cat's" mouth open and pretends to force down a dose of medicine. this is followed by wordless, fiercely strong hugs, over and over again. i'm trying to adapt to these incredible play therapy games. they are a powerful, bittersweet and aching reminder of where we stand. i love being a foil to toby's imagination and i am constantly struck by his ability to synthesize the unexplainable into positive experiences of love and togetherness.
love to all of you,
mooki and stephen
when ursula, toby's beloved nurse practitioner, told us that we didn't haveto return until monday, stephen and i blinked in surprise and mild panic. we realized that it would be impossible to reclaim a completely pre-disease weekend, but really tried to give toby a taste of normalcy, and found ourselves in the swings at the park, on a kiddie ride at coney island, at an outdoor table eating rice and beans, at the clinton street block party where we let the water from a fire hydrant run over toby's feet. and every minute we worried about him, wondering about his counts, eyeing the outcroppings of bruises on his legs, assessing the dark rings under his eyes, feeling his forehead for possible fever, washing his hands at every opportunity.
overall though, it was a lovely weekend and a much-needed respite. toby's energy level was good, with lots of outdoor activity in the mornings and quieter afternoons inside. we did go out for italian ice every evening, even in the midst of a rainstorm. and we moved today to our next sublet, which will take us through september 1, when we will need to move into a permanent rental. please let us know if you have any leads on a 3 br apartment with washer/dryer in park slope, cobble hill, carroll gardens, windsor terrace or surrounding nabes. we are very concerned about finding a place in time.
our temporary address is 66 1st place, brooklyn, ny 11231.
now, some details about last week:
on monday and tuesday toby received blood and platelets transfusions, from bags marked with small pink index cards. the cards are handwritten, in the style of old library catalogue cards and they let us know that this blood or those platelets were donated specifically for toby. due to privacy laws, the cards don't list the donor's name, but we have found out that more than 35 of you have come forward to donate for toby. we can't adequately express how powerful your actions are. it is indescribable seeing a friend's blood going directly into toby's body . thank you.
on tuesday morning, while on the way to toby's scheduled audiogram, i received a call telling us to report instead to the donor room, where toby's stem cells would be harvested during a 4-hour procedure. apparently, his white blood cell count was on the rise, after just two triple-strength doses of GCSF, the shot that stimulates wbc production. there's a small
window for collecting stem cells and the docs wanted to take advantage of the opportunity. toby had a surprisingly good time during the harvest, eating everything in sight and requesting pizza, peasoup, chips, icecream, muffins, yogurt and fruit salad. we haven't seen him eat so much in months.
his hemoglobin was very low during the procedure and while looking at all the pumps and tubes snaking out of his body and into the mainframe-sized machine, we couldn't imagine just how little blood he actually had circulating through his veins. late that evening we found out that 11 million stem cells were harvested (they needed a minimum of 7 million), which meant that we didn't need to return for another harvest.
wednesday morning toby drank his ct contrast dye/fluid and barely complained of hunger, even though he wasn't allowed anything by mouth until after the ct at 2 pm. he was cold and tired that afternoon, but still managed to simultaneously stuff 2 handfuls of pirate booty and 4 strawberries into his mouth. we'll hopefully have more details on the ct results this coming week. toby's audiogram has been rescheduled for tomorrow.
*************
i wanted to tell you how toby's play has changed over the last two months. he has created new games that don't require much movement and that use the bed as an imaginarium. on tired days we spend many hours lying down under the covers, as toby pretends to turn me into a cat, mouse, or bunny. he then proceeds to tell the "animal" exactly what he's feeling. i don't say much during these sessions, meowing or purring instead of using too many words. and this gives toby the space he needs to work through his new reality. he hugs and kisses the "cat" continuously, all the while explaining the different effects of medicine, or the way a g-shot feels. sometimes he asks the "cat" if her throat hurts and then says she has to take "zofran" (in actuality an anti-nausea medication). or he questions whether her stomach hurts and tells her very seriously that the "chemo medicine" will help (this one absolutely breaks my heart). occasionally he wrestles the "cat's" mouth open and pretends to force down a dose of medicine. this is followed by wordless, fiercely strong hugs, over and over again. i'm trying to adapt to these incredible play therapy games. they are a powerful, bittersweet and aching reminder of where we stand. i love being a foil to toby's imagination and i am constantly struck by his ability to synthesize the unexplainable into positive experiences of love and togetherness.
love to all of you,
mooki and stephen
Saturday, June 16, 2007
CT Results
we received a call from dr. kushner's office yesterday letting us know the preliminary results of the ct scan: the tumor is showing an "excellent" response to the 3 rounds of chemotherapy toby has undergone. no further details, but we wanted to share some good news with you. i'll try to post again soon. have a wonderful weekend everyone.
love mooki + stephen
love mooki + stephen
Wednesday, June 13, 2007
Hospitals are boring
In addition to everything else that Toby, Mooki and Stephen have to deal with during their long days at the hospital, there are long periods of time when Toby doesn't have much to do, or doesn't have much energy to be up and playing, or is sick of the options in the playroom etc. Then, like so many three year olds, he wants his parents to have endless amounts of energy to entertain him. This is getting really exhausting for them, and it's another way that we - those who want to support Toby and his family - can help. If you can make it to the hospital (67th and York) for even half an hour to read Toby some stories, play a game, do a puzzle, sing a song, do card tricks...pretty much anything that might be diverting, your help is needed.
There are a few caveats: Toby's schedule at the hospital is extremely unpredictable, so flexibility and knowing that you may get canceled at the last minute or something may come up is crucial. Right now, he is only at the hospital 3 days a week, but that can change at any time. You must be TOTALLY healthy to visit - no sniffles, runny noses, fevers etc. Like all 3 year olds, Toby may not be interested in connecting with a new person at any given time, so you shouldn't take it personally if he isn't as gracious as, say, a grown-up would be that you went out of your way for him. But an infusion of good play energy, even if it's only for a half hour or so, would give Mooki and Stephen a little slack in their very long days up there.
If you want to go visit Toby, call Mooki at 917-359-2989 or email her. As with everything else, even small things matter - a short visit will mean a lot. You should call right before you want to visit - like the day before, or even that morning. Mooki shouldn't be keeping a running list of who wants to do this. It's just got to be a fairly spur of the moment thing.
You can double your support by visiting Toby while you're at the hospital to donate blood or platelets, or by donating while you're there to visit.
thanks
Jessica
There are a few caveats: Toby's schedule at the hospital is extremely unpredictable, so flexibility and knowing that you may get canceled at the last minute or something may come up is crucial. Right now, he is only at the hospital 3 days a week, but that can change at any time. You must be TOTALLY healthy to visit - no sniffles, runny noses, fevers etc. Like all 3 year olds, Toby may not be interested in connecting with a new person at any given time, so you shouldn't take it personally if he isn't as gracious as, say, a grown-up would be that you went out of your way for him. But an infusion of good play energy, even if it's only for a half hour or so, would give Mooki and Stephen a little slack in their very long days up there.
If you want to go visit Toby, call Mooki at 917-359-2989 or email her. As with everything else, even small things matter - a short visit will mean a lot. You should call right before you want to visit - like the day before, or even that morning. Mooki shouldn't be keeping a running list of who wants to do this. It's just got to be a fairly spur of the moment thing.
You can double your support by visiting Toby while you're at the hospital to donate blood or platelets, or by donating while you're there to visit.
thanks
Jessica
Toby's Upcoming Surgery
Dear Family
Yesterday we began the initial steps in preparation for Toby's surgery on the 27th. The day began like so many others of late, but our destination was the donor room on the first floor of the hospital and not pediatrics unit on the 9th floor, we were there to harvest Toby's stem cells. In effect, we were saving some of Toby's stem cells for future use (hopefully we will not need them). The procedure is much like donating platelets, but instead of separating platelets from the blood, stem cells were collected.
Today, again, up to Sloan-Kettering, this time for a pre-surgery CAT scan, the scan this time is to determine how the 3 rounds of chemo have effected the tumor. For the scan Toby will be under "sleep medicine" for about 30-45 minutes. We are silently hopeful that the scans will show a diminished tumor and that the surgery will take place on the 27th.
We do not know what to expect in the days leading up to the surgery and the day of the surgery but we expect it to be difficult. The surgery as you might imagine will be invasive, lasting 8-10 hours, after which Toby will be in the ICU and then move to the in-patient unit until he is ready to come home. Unfortunately, once he is well enough to come home he will also be well enough for the 4th round of chemo.
As we are preparing for these next steps Mooki and I wanted to let you know that your support, e-mails, packages, prayers, donations of time and money have been very much appreciated. All of this said we will ask for something more- Yoram's schedule at Children's Hospital will limit his time here in NYC the week of Toby's surgery. Most likely Yoram will be here the day of the surgery, but we expect that he will need to be back in DC for most of that week.
Anna will be with us the for a week the first week of July and Catherine has offered to be here for a week beginning the 15th of July.We know it is very short notice but if any of you were considering coming to nyc the week of June 24th will be a challenging week for all of us.
much love
stephen & mooki
Yesterday we began the initial steps in preparation for Toby's surgery on the 27th. The day began like so many others of late, but our destination was the donor room on the first floor of the hospital and not pediatrics unit on the 9th floor, we were there to harvest Toby's stem cells. In effect, we were saving some of Toby's stem cells for future use (hopefully we will not need them). The procedure is much like donating platelets, but instead of separating platelets from the blood, stem cells were collected.
Today, again, up to Sloan-Kettering, this time for a pre-surgery CAT scan, the scan this time is to determine how the 3 rounds of chemo have effected the tumor. For the scan Toby will be under "sleep medicine" for about 30-45 minutes. We are silently hopeful that the scans will show a diminished tumor and that the surgery will take place on the 27th.
We do not know what to expect in the days leading up to the surgery and the day of the surgery but we expect it to be difficult. The surgery as you might imagine will be invasive, lasting 8-10 hours, after which Toby will be in the ICU and then move to the in-patient unit until he is ready to come home. Unfortunately, once he is well enough to come home he will also be well enough for the 4th round of chemo.
As we are preparing for these next steps Mooki and I wanted to let you know that your support, e-mails, packages, prayers, donations of time and money have been very much appreciated. All of this said we will ask for something more- Yoram's schedule at Children's Hospital will limit his time here in NYC the week of Toby's surgery. Most likely Yoram will be here the day of the surgery, but we expect that he will need to be back in DC for most of that week.
Anna will be with us the for a week the first week of July and Catherine has offered to be here for a week beginning the 15th of July.We know it is very short notice but if any of you were considering coming to nyc the week of June 24th will be a challenging week for all of us.
much love
stephen & mooki
Monday, June 11, 2007
Toby Update
we have a busy week coming up with a cbc scheduled for monday, an audiogram to test toby's hearing on tuesday, a neck/chest/ abdomen/pelvis ct scan with anesthesia on wednesday and stem cell harvesting on thursday and possibly friday. we will probably need more blood and platelets transfusions as well.
friday was a typical day at the hospital: a short visit turned into an entire day of procedures, waiting, and unexpected developments. we arrived early for a routine cbc (complete blood count, when blood is drawn and tested from toby's broviac port, in the middle of his chest). he was also scheduled to receive his 4th loading dose of pentamidine, a drug that wards off pneumocystis pneumonia. toby had been on an oral regimen of a similar drug, but we are finding it almost impossible to give any medication by mouth. toby cries, flat-out refuses, screams, and engages in talmudic-worthy discussions about why he can't swallow medicine. we cajole, beg, bribe, institute rewards via charts with shiny stars, explain, cry, insist, occasionally force the medicine down his throat, and generally give up in frustration. pentamidine, which can be given via iv directly into toby's "tubies," promised most of the gain with little of the pain. unfortunately, one of the side effects of the drug is vomiting and nausea.
we spent last week working with the nurses to finetune our dosing regimen: premedicating with aloxi, an anti-nausea drug, then adding in vistaril, another antiemitic. no matter what we did, within 30 minutes of receiving the pentamidine, toby would moan, slump and throw up miserably and violently. toby has barely been eating and was still vomiting from the cisplatin, additional vomiting from a different drug just added insult to injury. by friday we finally hit on the right combination, thanks to the perseverance of nurse kate: aloxi and vistaril, given simultaneously over a half hour. then pentamadine, set to drip very slowly over the course of 90 minutes.
when the counts came back from the lab we learned that toby's hemoglobin and platelet levels were both quite low and transfusions were necessary. so we waited for a bed, waited for the bags of blood products to arrive upstairs, waited for the premeds to take effect and started the 1/2 hour infusion of platelets. midway, toby developed hives, an occasional reaction, and we waited while consultations occurred, more labs were done, and eventually the decision was made to take him off the platelet transfusion. then 3 hours of blood transfusion and at 6:30 we were finally, blessedly, home.
*******
there have been days, mainly at the beginning, when toby's only comfort has come from his cd player and a constant loop of randy's music. initially stephen and i found the sight and sound impossible to witness without breaking down in tears. the combination of toby's curled-up little body on a hospital bed and randy's sweet voice singing about trains and sunshine and mosquitos was just too difficult to bear. but we saw how the music soothed toby and gave him peace. somehow we've learned how to listen on toby's level, without our adult associations, without the pain of memory, with open hearts to the moment. i was reminded of all this on thursday night when i had the tremendous opportunity to attend the toby benefit concert, organized and sponsored by beansprouts.
from the moment i saw the garden overflowing with strollers and families, i felt the tears coming on hard and without interruption. i didn't know if i would be able to handle the huge emotions: there are beautiful, healthy children everywhere, i don't know how to act, why can't toby be here, i'm afraid i will cry and won't be able to stop, if you hug me i might not be able to let go, i don't understand why this is happening, i don't want people to stare, how can my child have cancer? it was incredibly difficult, but i am so glad i stayed at the concert. every person i saw, every note i heard, has made a difference for me and stephen and yoni and toby.
a message to randy, victor+friends, joanne, hot peas 'n butter, beansprouts, friends: we are comforted by you. you remind us that we are not alone. you enable us to feel a part of this community and we are so grateful.
love, mooki and stephen
Wednesday, June 6, 2007
Scattered Thoughts
i'm too tired and emotionally overwhelmed to put together an update, but do have some scattered thoughts that i want to share.we've been living out of suitcases for the last 3 weeks, recycling the same 4 outfits over and over. in a way it makes life simpler, especially on those mornings when we have to leave brooklyn at 7:15 in order to make it up to memorial sloan-kettering in time for treatment. i've discovered that most of my clothes are totally inappropriate for the hospital... who can possibly wear pointy-toed shoes and sleeveless dresses while holding and consoling a screaming, hurting child? cute skirts just don't cut it when trying to balance 2 bags, a stroller, a portable urinal, a barf basin and an iv pole. this week, with the aftereffects of cisplatin lingering, our plain-jane tshirts have been put to good use as fluid collectors, face smoothers, vomit moppers.
a few weeks ago i asked some of you to help me get soft lightweight pants for toby to wear at the hospital. i was concerned that i didn't have anything appropriate in his size. as it turns out, i needn't have worried. toby is so skinny that the clothes that were tight on him last year are now baggy. i'm constantly retying the waistbands of his pants, so that they don't fall off in midstride. the collars of his tshirts look huge and loose around his little neck. and his underwear literally hangs off him. it's so disorienting to be going backwards, from size 4 to size 3. i know that we have only just started treatment... he will get even skinnier...
toby has eaten just a few bites over the last 5 days. all week we have tried every possible food and combination. his tastes keep changing because of the chemo... one day it's only crunchy foods, the next it's only mushy. add in nausea, mouth sores, exhaustion and neutropenic restrictions and feeding toby becomes akin to an act of prophecy. we're never quite sure what food will go over, but tonight we won the lottery with 6 ounces of ensure, disguised in his sippy cup as "chocolate milk."
i've been having a hard time falling asleep this week, alternating between despair and tears every night. we've made it through 3 cycles of hardcore chemo and that's a lot. what i'm having trouble with is the knowledge that there is still so much that awaits us. and it seems huge, frightening, insurmountable. a massive surgery is around the corner. and then 2 more rounds of chemo, but possibly more. then extremely painful 3f8 antibody treatments that can continue for up to 2 years, overlapping with radiation, and accutane. i see the effects that chemo has already had on toby... i don't know how many of you would recognize him. and i worry what the next stages will be like for him. i know we have to stay the course. i know that this treatment, with all of its horrible short-term and long-term side effects will ultimately give us the best chance of saving toby's life. i know that i can't keep comparing our life today with our life of just 7 weeks ago. and i know that i need to stop thinking about the numbers, about the kids who don't make it.
what i need to do: focus on my beautiful child, make sure that he is comfortable and happy. take it day by day or even hour by hour. play. be loving to my older son, who is such an incredible boy and is going through so much right now. be grateful to my friends and family who are helping in so many, many ways. and thank god for stephen, who is taking every step with me.
Monday, June 4, 2007
Another Way to Donate
A Benevolent Account has been established in Toby's name at Washington Mutual Bank. Donations go directly to Toby and will be used at the family's discretion without restrictions to pay expenses associated with the support and well-being of Toby. These funds will be used for un-insured medical expenses, housing, food and Toby's care. Donations to the benevolent account are not tax deductible.
Donations can be made via a secure wire transfer directly into Toby's account at Washington Mutual. Please contact Stephen Pannone at svpannone {at} yahoo.com for account reference numbers.
Additional wire transfer information and instructions can be found at:
http://www.wamu.com/commercial/internationalbanking/foreignexchange/wiresdrafts/order/order_NY.htm
Washington Mutual Bank
700 6th Ave.
New York, NY
10010
www.wamu.com
U.S.-1.800.788.8000
International- 818.775.6420 (collect call) or
800.540.WAMU.1
bank swift code- WMSBUS66
Donations can be made via a secure wire transfer directly into Toby's account at Washington Mutual. Please contact Stephen Pannone at svpannone {at} yahoo.com for account reference numbers.
Additional wire transfer information and instructions can be found at:
http://www.wamu.com/commercial/internationalbanking/foreignexchange/wiresdrafts/order/order_NY.htm
Washington Mutual Bank
700 6th Ave.
New York, NY
10010
www.wamu.com
U.S.-1.800.788.8000
International- 818.775.6420 (collect call) or
800.540.WAMU.1
bank swift code- WMSBUS66
First-hand from the MSK Donor Room
On Friday, I donated platelets for Toby at the MSKCC donor room. I want to get the word out so that everyone can know how really easy and relatively painless the whole procedure is. And I'm completely nervous and ick-ed out by needles - I am not stoic about these things, really.
First - MSK does everything they can to make it easy to donate. You call Mary Thomas or the donor room to schedule an appointment. (Mary's # is 212-639-3335 and the Donor Room is 212-639-7648). They take donations every day, including weekends, and they keep track of what Toby's needs are so that you will only be scheduled when they know he will need something. This is pretty easy right now, as he is in pretty constant need of both blood and platelets. If you drive to the hospital (which only took about a half hour from Park Slope on Friday at 9:30 am), you can park for free in the MSK parking lot at 66th and York. They give you a parking voucher when you check in with the Donor Room.There's a link on the right side of the blog where all the info is easy to find. There is also lots of information about donating on the hospital's website.
Once you get there, you fill out some paperwork and they take a pinprick of blood from your finger to find out if your iron count is high enough. A number of Toby's friends have been turned away because their iron counts were too low, but if you eat high iron foods and/or take iron supplements (like liquid Flouridex) for a couple of weeks, you can try again. Once you get through the preliminary stuff, you go into the Donor Room - a room with about 8 dentist-like chairs with little TVs attached to them. You sit in one of them, they put the needle in your arm and take your donation. OK - so here's the deal with the needle: If you've ever given blood before, or had an IV put in before - you know what it feels like. It does hurt, but really only for about 10 seconds. Then you really don't feel it. You may not want to look at the tubes coming out of your arm, but you don't feel any discomfort once the needle is in. For anyone who has ever given birth, it hurts SO much less than even five minutes of your labor did. Even the most needle phobic among us can do it. I am in that group, so I can attest to it.
I gave platelets, which meant that my blood went into a machine that separates the red blood cells from the platelets. The platelets are collected for Toby and the red blood cells got mixed with a small amount of a short-term anti-coagulant and put back in my arm with the same needle that the blood was coming out through. It felt slightly cold around where the needle was and my fingers were a little tingly from the anticoagulant, but again - no pain. And for those who worry about the hygiene of the equipment that is putting blood back into your body, all parts that touch the blood are disposable and only used by one person.
The whole process once I was hooked up took just over 90 minutes. (Donating blood is much quicker.) I got a special treat, because Mooki knew I was there and she came to visit me for a few minutes, which was great. In the past when I have given blood, I have been extremely light-headed. Because they give you back your red blood cells, that doesn't happen with platelets. I drank a cup of oj and ate a cookie, and I was able to drive myself home about 20 minutes after I was done.
I think there's a good chance that the platelets that came out of my arm on Friday will go into Toby's arm on Monday or Tuesday. I can't imagine a more direct way to help him and his parents.
I hope that everyone who reads this will try to donate. If you are a different blood type than Toby, they will swap your blood for one in the general hospital blood supply and put your name on Toby's donor list. Almost everyone can do it (they will talk you through the list of who can't - mostly involving living abroad - when you call for an appointment). You can go with a friend to have company when you do it. It takes less than a whole morning. For most of us, this is the most important and direct thing we can do to help Toby and his family.
If you have any other questions, or need any help navigating this process, please don't hesitate to email me at jbauman {at} pipeline.com.
Make your appointment now! You'll be glad you did!
Jessica
First - MSK does everything they can to make it easy to donate. You call Mary Thomas or the donor room to schedule an appointment. (Mary's # is 212-639-3335 and the Donor Room is 212-639-7648). They take donations every day, including weekends, and they keep track of what Toby's needs are so that you will only be scheduled when they know he will need something. This is pretty easy right now, as he is in pretty constant need of both blood and platelets. If you drive to the hospital (which only took about a half hour from Park Slope on Friday at 9:30 am), you can park for free in the MSK parking lot at 66th and York. They give you a parking voucher when you check in with the Donor Room.There's a link on the right side of the blog where all the info is easy to find. There is also lots of information about donating on the hospital's website.
Once you get there, you fill out some paperwork and they take a pinprick of blood from your finger to find out if your iron count is high enough. A number of Toby's friends have been turned away because their iron counts were too low, but if you eat high iron foods and/or take iron supplements (like liquid Flouridex) for a couple of weeks, you can try again. Once you get through the preliminary stuff, you go into the Donor Room - a room with about 8 dentist-like chairs with little TVs attached to them. You sit in one of them, they put the needle in your arm and take your donation. OK - so here's the deal with the needle: If you've ever given blood before, or had an IV put in before - you know what it feels like. It does hurt, but really only for about 10 seconds. Then you really don't feel it. You may not want to look at the tubes coming out of your arm, but you don't feel any discomfort once the needle is in. For anyone who has ever given birth, it hurts SO much less than even five minutes of your labor did. Even the most needle phobic among us can do it. I am in that group, so I can attest to it.
I gave platelets, which meant that my blood went into a machine that separates the red blood cells from the platelets. The platelets are collected for Toby and the red blood cells got mixed with a small amount of a short-term anti-coagulant and put back in my arm with the same needle that the blood was coming out through. It felt slightly cold around where the needle was and my fingers were a little tingly from the anticoagulant, but again - no pain. And for those who worry about the hygiene of the equipment that is putting blood back into your body, all parts that touch the blood are disposable and only used by one person.
The whole process once I was hooked up took just over 90 minutes. (Donating blood is much quicker.) I got a special treat, because Mooki knew I was there and she came to visit me for a few minutes, which was great. In the past when I have given blood, I have been extremely light-headed. Because they give you back your red blood cells, that doesn't happen with platelets. I drank a cup of oj and ate a cookie, and I was able to drive myself home about 20 minutes after I was done.
I think there's a good chance that the platelets that came out of my arm on Friday will go into Toby's arm on Monday or Tuesday. I can't imagine a more direct way to help him and his parents.
I hope that everyone who reads this will try to donate. If you are a different blood type than Toby, they will swap your blood for one in the general hospital blood supply and put your name on Toby's donor list. Almost everyone can do it (they will talk you through the list of who can't - mostly involving living abroad - when you call for an appointment). You can go with a friend to have company when you do it. It takes less than a whole morning. For most of us, this is the most important and direct thing we can do to help Toby and his family.
If you have any other questions, or need any help navigating this process, please don't hesitate to email me at jbauman {at} pipeline.com.
Make your appointment now! You'll be glad you did!
Jessica
Sunday, June 3, 2007
Toby in the NY Daily News
Found the article online here.
Excerpt: When folks found out that 3-year-old Toby Pannone had cancer, everyone wanted to help. It was the neighborly thing to do.
But the novel twist to the old-fashioned acts of kindness offered to Toby and his parents - Stephen Pannone and Mooki Saltzman - was that many of these neighbors lived in a virtual community on the Internet.
Some volunteered to cook meals, others offered to provide rides from Brooklyn to Memorial Sloan-Kettering Cancer Center in Manhattan. When they learned Toby's illness meant he couldn't be around the family's cats, neighbors took the two pets in. When mold was discovered in the family's home, other neighbors offered a new place to stay.
Saturday, June 2, 2007
bone marrow results and chemo 3
we received the results for the bone marrow biopsies late thursday afternoon, and we're feeling guardedly positive. one of the samples is clean, the other still shows neuroblastoma cells. while we would have been happiest with two clean biopsies, we are going to accept this as a small victory. the chemo is working. it will take more cycles to get the bone marrow totally clean, but we are determined to get there.
the biopsies were taken from toby's hip bones and i'll share with you the official language: 1. bone marrow, left posterior iliac crest, biopsy: metastatic neuroblastoma in multiple small foci. the uninvolved bone marrow appears unremarkable. 2. bone marrow, right posterior iliac crest, biopsy: normocellular bone marrow (approx 80% cellularity) with trilineage hematopoiesis the m:e ratio is normal with adequate maturation in all cell lines we see no evidence of neuroblastoma
i have to admit that it sounds better than the language that accompanied toby's first bone marrows, done during the awful week of diagnosis on april 20: "metastatic neuroblastoma extensively involving bone marrow."
we are still awaiting the results of the bone marrow aspirates, which test the blood/liquids from the front of the hip area.
the procedure itself was unremarkable and probably more difficult for us than for toby. we brought toby's boom box into the operating room and he received "sleep medicine" while listening to kermit sing a song about rainbows. stephen was holding him as he entered the land of dreams. 20 minutes later he woke up and demanded to hear the rest of the song which we had so rudely interrupted. the next day he realized that he had four 3-inch packed gauze dressings on his lower torso. although initially alarmed, he has become extremely protective of the bandages and refuses to let us remove them. since toby has no control over anything in his life right now, we are letting him hold onto his bandages until they rot off.
round 3 of chemo was exhausting for all of us, but again, toby weathered it amazingly well. we had very long days at the hospital, leaving the house at 7:15 in the morning and arriving home at 7:30 in the evening. the drugs in cycle 3 are particularly harsh, causing extensive nausea, vomiting and the possibility of significant hearing loss. and yet toby continues to amaze us with his energy, his smiles, his smarts and his incredible sweetness. he now accepts the 6-foot-tall IV "pole buddy" as a natural extension of himself and pushes it around, pretending to be on a highway. this week he started to help the nurses to draw his own blood, and to flush his "tubies" with heparin. and for the first time since the beginning of treatment he asked about his broviac tubes, "where do they go, mommy? what are they connected to inside my body?" there's something very sad about toby's necessary medical education. i would much prefer that he ask about frogs or fairies or sunshowers. on the other hand, we are in awe of the force of his personality, his inquisitiveness, his resolve in the face of a completely new life and environment. he is engaging with the world and we embrace the opportunity to teach, to learn, to be silly.
we are at home for the weekend, with a 72-hour IV backpack of fluids connected to toby and carried by either stephen or me at all times. toby's not eating much because of the nausea, but he has only thrown up twice. he is officially neutropenic, so we are again paranoid about every real or imaginary germ. neutropenia (when the white blood cell count bottoms out) requires a special diet and extremely cautious behavior from constant handwashing to limited contact with other people. this is what went through my brain as i was making breakfast this morning: make sure that i cook the eggs enough, did i wash my hands just now? i have to throw out the strawberries and blueberries so that toby doesn't ask for them. oh no the grapes too. what time did i give him the anti-nauseau medication? if grapes aren't allowed then what about the grape juice he had for shabbat last night? are these eggs dry enough yet? oh god i just noticed that the smoothie has strawberries in it. well he'll probably not eat any of it anyways. i have to get more purell. when was the last time toby peed? did i breathe on him this morning when we cuddled? what if i have a cold? what if i've cross contaminated him and we have to be admitted to the hospital again? ok maybe i should wear a mask. we need more tomato soup. i wonder how much toby weighs. damn the eggs are burnt.
on june 15 toby is scheduled for a ct scan, to see how the tumor has responded to cycle 3 of chemo and we are tentatively scheduled for surgery on june 27. i anticipate that stephen and i will need a lot of support that day, and in the week leading up to and following this massive operation.
speaking of support, tomorrow's (sunday, june 3) ny daily news will have a story about toby and the amazing support network that each and every one of you has created through your food deliveries, errands, financial assistance, blood and platelets donations, visits, gifts, phone calls, emails, stoop sales and more. i have said it before and i'll say it again, we would not have gotten this far without your love, your strength and your care. look for the piece in the brooklyn section.
love, mooki and stephen
the biopsies were taken from toby's hip bones and i'll share with you the official language: 1. bone marrow, left posterior iliac crest, biopsy: metastatic neuroblastoma in multiple small foci. the uninvolved bone marrow appears unremarkable. 2. bone marrow, right posterior iliac crest, biopsy: normocellular bone marrow (approx 80% cellularity) with trilineage hematopoiesis the m:e ratio is normal with adequate maturation in all cell lines we see no evidence of neuroblastoma
i have to admit that it sounds better than the language that accompanied toby's first bone marrows, done during the awful week of diagnosis on april 20: "metastatic neuroblastoma extensively involving bone marrow."
we are still awaiting the results of the bone marrow aspirates, which test the blood/liquids from the front of the hip area.
the procedure itself was unremarkable and probably more difficult for us than for toby. we brought toby's boom box into the operating room and he received "sleep medicine" while listening to kermit sing a song about rainbows. stephen was holding him as he entered the land of dreams. 20 minutes later he woke up and demanded to hear the rest of the song which we had so rudely interrupted. the next day he realized that he had four 3-inch packed gauze dressings on his lower torso. although initially alarmed, he has become extremely protective of the bandages and refuses to let us remove them. since toby has no control over anything in his life right now, we are letting him hold onto his bandages until they rot off.
round 3 of chemo was exhausting for all of us, but again, toby weathered it amazingly well. we had very long days at the hospital, leaving the house at 7:15 in the morning and arriving home at 7:30 in the evening. the drugs in cycle 3 are particularly harsh, causing extensive nausea, vomiting and the possibility of significant hearing loss. and yet toby continues to amaze us with his energy, his smiles, his smarts and his incredible sweetness. he now accepts the 6-foot-tall IV "pole buddy" as a natural extension of himself and pushes it around, pretending to be on a highway. this week he started to help the nurses to draw his own blood, and to flush his "tubies" with heparin. and for the first time since the beginning of treatment he asked about his broviac tubes, "where do they go, mommy? what are they connected to inside my body?" there's something very sad about toby's necessary medical education. i would much prefer that he ask about frogs or fairies or sunshowers. on the other hand, we are in awe of the force of his personality, his inquisitiveness, his resolve in the face of a completely new life and environment. he is engaging with the world and we embrace the opportunity to teach, to learn, to be silly.
we are at home for the weekend, with a 72-hour IV backpack of fluids connected to toby and carried by either stephen or me at all times. toby's not eating much because of the nausea, but he has only thrown up twice. he is officially neutropenic, so we are again paranoid about every real or imaginary germ. neutropenia (when the white blood cell count bottoms out) requires a special diet and extremely cautious behavior from constant handwashing to limited contact with other people. this is what went through my brain as i was making breakfast this morning: make sure that i cook the eggs enough, did i wash my hands just now? i have to throw out the strawberries and blueberries so that toby doesn't ask for them. oh no the grapes too. what time did i give him the anti-nauseau medication? if grapes aren't allowed then what about the grape juice he had for shabbat last night? are these eggs dry enough yet? oh god i just noticed that the smoothie has strawberries in it. well he'll probably not eat any of it anyways. i have to get more purell. when was the last time toby peed? did i breathe on him this morning when we cuddled? what if i have a cold? what if i've cross contaminated him and we have to be admitted to the hospital again? ok maybe i should wear a mask. we need more tomato soup. i wonder how much toby weighs. damn the eggs are burnt.
on june 15 toby is scheduled for a ct scan, to see how the tumor has responded to cycle 3 of chemo and we are tentatively scheduled for surgery on june 27. i anticipate that stephen and i will need a lot of support that day, and in the week leading up to and following this massive operation.
speaking of support, tomorrow's (sunday, june 3) ny daily news will have a story about toby and the amazing support network that each and every one of you has created through your food deliveries, errands, financial assistance, blood and platelets donations, visits, gifts, phone calls, emails, stoop sales and more. i have said it before and i'll say it again, we would not have gotten this far without your love, your strength and your care. look for the piece in the brooklyn section.
love, mooki and stephen
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