Limbo

Living with cancer is a roller coaster, both real and imagined. Just as Toby, Mooki, and Stephen were attempting to have a few quasi-normal days, something that Toby desperately deserves, the neuroblastoma crept back to the fore (as if it had ever gone away) reestablishing itself and making sure to squash any chance at normalcy. This is the reality of living cancer.

Life has been hellish since Thursday, when Mooki and Stephen received the call to return to Sloan because one of the images on the MIBG scan “lit up” where it hadn’t done so previously, signifying the potential of disease progression. Five days, and two additional scans later, it’s still not clear if the neuroblastoma has spread or if the “lighting up” is nothing more than an inconsequential “artifact.” Mooki and Stephen’s every moment has been filled with uncertainty, fear, doubt, anger, and loneliness. They have been left to assume the worst and like so many times until now, their resolve and hope has been repeatedly trampled upon. This imagined torment of cancer is all too real and just as devastating as living with its physical manifestations.

Hopefully, by tomorrow it will become more apparent what the significance of the abnormality seen on the MIBG scan is. It is extremely important to know exactly where and how much neuroblastoma remains in order to know what the next best treatment for Toby is.

The life that Mooki and Stephen once knew is a thing of the past. Each morning they wake up and make sure that Toby is comfortable. They give him his medicines, check his “tubies,” feed him breakfast and then make the trip to the hospital where they spend their day while Toby endures an assortment of poking, prodding, and testing. They return home late in the evening where they briefly catch up with Yoni, feed Toby, give him medicine, get things ready for the next day, pay bills, and collapse into bed. Often sleep comes only after long periods of thinking “what if” and then the cycle resumes the next morning.

In my prior posts I have reached out to you for a variety of reasons. Today, I would like to do so once again. Just like Toby, Mooki and Stephen also need some semblance of normalcy in their lives, if only as a pleasant distraction. Instead of eating the wonderfully prepared meals in the familiar (and at times depressing) environs of their home, they need to eat out with and at friends’ homes. Instead of spending countless hours alone at Sloan, they need some company to help pass the time. This would be a huge deal for Mooki, Stephen, Yoni, and Toby and while they may not be able to or may not feel like accepting each and every invite, please make the offer.

Yoram

From: "stephen pannone"
To: "Mercedes Pannone"
Sent: Thursday, October 25, 2007 8:40 PM

> Mom-
>
> Sorry to be out of touch, we're just trying to get
> through this week of scans. So far we have had the CT
> done (wed.) Today was Echo and MIBG. After the scans
> today we had a few hours to get out. We went to the
> City of New York Museum. In the cab on the way home we
> had a call from the hospital (5:30 pm), they wanted us
> to come back in for a rescan because they saw
> something suspicious. We got back there but the
> scanner was having technical problems so we are now
> home without clarity and with the knowledge that
> something else may be there. We don't know anymore and
> just have to get through the night knowing that we may
> have more bad news in the morning when we
> are back at Sloan.
>
> stephen

Home

Toby’s white count rose to 1.6 during the night, enough to spring us out of the hospital after a 12-day stay. He is ecstatic to be back home.

This is what he did from 4:00-9:00 today:
took his trike out for a ride,
had an orange kiss ice at uncle luigi’s,
visited ernie at the pizzeria,
left a note for his friend zoe,
checked out the new halloween decorations on the block,
built a fort out of pillows,
jumped on the bed,
rolled his schoolbus all over the mattresses,
sat on the steps and grooved to some music,
sent silly messages to christopher from the window,
had a few spoons of corn, 1 cucumber spear, 10 tortilla chips dipped in tomato sauce, a bowl of vanilla ice cream, and a cup of grape juice,
kissed yoni’s knees,
took a bath,
tried on his halloween ladybug costume 4 times.

It has been the BEST afternoon.

love, mooki + stephen

A Quick Update

We are still in the hospital, waiting for Toby's counts to come up. He is doing well, watching a lot of tv, starting to eat and making countless laps around the inpatient ward each day. Stephen and I are taking turns sleeping at the hospital. Scans are scheduled to begin next Wednesday. I'll post another update soon.
love, mooki

Abbreviations

Toby is back in the hospital.

Chemotherapy's impact on the bone marrow and other organs typically reaches its maximum effect 7-10 days after a cycle. It is at this point when blood counts reach their lowest and when fever and the risk for infection is greatest. Toby is now 10 days out from cycle #7 of chemo. His white blood cells are low, i.e., neutropenia (N) and almost on cue, he spiked a fever (F) last night, guaranteeing an automatic admission for I.V. antibiotics for what doctors call "F/N."

Toby also has pretty significant nausea (N) vomiting (V) and diarrhea (D). One of the chemo agents he got, irinotecan, is known to cause diarrhea, but because Toby has so few white blood cells, which normally ward off infection, the diarrhea and vomiting might be a sign of a bad infection of the bowel wall commonly seen in post-chemo neutropenic patients called typhlitis. For this reason, instead of the usual one or two antibiotics for F/N, Toby is on three antibiotics just in case he does have typhlitis. A mainstay of treatment for typhlitis is bowel rest, with minimal to no food. Toby's gut actually sounds like it's "working" so while his doctors aren't allowing him to eat anything (he doesn't have much of an appetite according to Mooki) they are letting him have a clear liquid diet (CLD). Because Toby isn't in the mood to eat he has to get nutrition somehow else. The two options are either nutrition via a tube that is snaked through the nose into the stomach (an NG tube) or nutrition directly through the vein. Because of the N/V/D, feeding Toby via an NG tube isn't the best option, meaning that unless he makes a quick recovery, he'll need I.V. nutrition, known as total parenteral nutrition (TPN).

As you can imagine, Toby's pretty wiped out and lacking in energy. He received a blood transfusion today and hopefully that will help a little, but the constant V/D is extremely draining and fatiguing. The retching associated with vomiting is painful and the frequent diarrhea is irritating both to Toby's body and to his spirit.

Toby will be at Sloan until his blood counts recover, he is fever-free, without an active infection, and able to eat and drink on his own. He is scheduled for another round of re-evaluation scans (CTs, MIBG, MRI, blood tests, and bone marrows) in a couple of weeks to see how the neuroblastoma responded to this most recent round of chemo. Let's hope that Toby has a speedy and uneventful recovery, that he makes it home before he has to endure the next barrage of testing, and that he doesn't encounter anymore abbreviations.

Yoram

Fundraiser October 11th in Soho

A wonderful friend has organized a photography event, which will take place on Thursday, October 11 from 6:30-8:30 at 110 Greene Street in New York City. A group of 7 very talented, emerging photographers have generously donated their photographs. There will be light food and drink and an opportunity to view and purchase beautiful artwork. Children are welcome. All proceeds from the door and sales will benefit neuroblastoma research and development at Memorial Sloan-Kettering through the Children's Neuroblastoma Cancer Foundation.

Funding for research and treatment of pediatric cancers is insufficient to meet the needs of children with neuroblastoma. The therapies these children endure are long and painful, and there are limited options to save their lives. However, there are promising therapies in the pipeline that could soon be manufactured for testing in clinical trials. Money raised at the photography fundraiser will be of direct help to Toby and many, many others in the near future.

We are immensely grateful to Luba Proger, Adi Lavy, Ignacio Ayestaran, Jason Guerrero, Leonid Khanin, Maria Aiolova, Tina Roth Eisenberg, Evans Real Estate, Evelina Ioselev, Patricia Tallungan, dishes, Nuvo, and all those who have contributed their time to make this event a reality.

For more information, please visit www.orangefog.com/art_projects.html