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.








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.

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

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

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

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.