Love For Luca

Some Time At Home

With Luca finished with his last round of relapse treatment, we were able to check out of Sloan-Kettering a couple weeks ago and move back home. We'll be heading back for our long bone marrow transplant battle soon, so these few weeks have been a huge blessing, and Luca has enjoyed every minute. Highlights include:

• A visit from Papa and Nana V.
• Another trip to Central Park.
• Meeting John and Kelly, the first members of the Reale family that Luca has met in person.
• Driving upstate to pick apples with Uncle Steve and Aunt Laney.
• Shannon and Josh getting engaged.
• Hanging out with MK.
• The Park Slope Halloween parade (Luca was a lion), where we saw Golden and and his mom and dad, and the Urbanski family.
• Lots of walks through the neighborhood with Aunties Suhad and Didi.
• Seeing Sido Souheil.
• And lots and lots of playing, eating, reading, chatting, and other cool baby stuff.

 

Photos - August & September 2008

We continue to be amazed and overwhelmed by the continued love and support from everyone. There really aren't words for how much it means to us.

A New Plan

Luca's first round of relapse chemotherapy (called TVTC) went very well. The leukemia in his nose appears to be gone, and although he had a few rough days, he flew through without any major bumps or bruises. TVTC is a tough treatment, and we're lucky Luca was able to stay so strong. After only a couple weeks of neutropenia, his white counts quickly shot back up, and we were able to head back home.

While we were home, Luca was visited by his twin cousins, Rajeh and Mazen. It was the first time that all three of the boys were able to play together. The twins treated Luca like their little brother, and Luca learned a few new moves to take back to Sloan. We were extremely grateful for the chance to see all of the cousins finally getting to know each other and having fun.

Last week a long meeting was held to plan Luca's remaining treatment. Members from the leukemia, surgical, transplant, and radiation teams reviewed Luca's entire history, and offered their opinions. We now have a tentative plan moving forward.

First, Luca will receive one more round of the relapse chemotherapy. Even though the chloroma on his nose has shrunk down and his latest bone marrow tests show no signs of leukemia, there is no scan sensitive enough to guarantee that every single Leukemia cell is gone. So this next round (which we started last week), is a way to increase the chances that Luca is in full remission.

At the same time, Luca will also receive very low-grade radiation therapy on an isolated spot on his nose. Leukemia can be very stubborn when it shows up in the skin, and radiation will help eliminate any bad cells that the chemotherapy doesn't reach. There are great risks with everything we do here, but this particular radiation treatment won't penetrate beyond his skin, and, God willing, won't produce any serious side effects.

Then, after Luca's counts recover from this last round of chemo, we'll start down the long and sometimes difficult road of bone marrow transplant. Although Luca's marrow has come back clean ever since his very first round of treatment, a transplant is the best way to ensure that the leukemia is gone forever. The transplant team at Sloan is amazing, and we're confident that Luca will be added to their long list of success stories.

We'll follow up with more details as we get closer to transplant. For now, we'll help Luca get through his daily battles, and watch in amazment as he continues to grow up throughout it all.

Off to a Good Start

It's been almost two weeks since Luca started chemotherapy again. Thankfully, the lesion on his nose immediately responded to the treatment, and is now back to normal. The team was very excited at Luca's progress, as there was no guarantee that the leukemia would respond to this new protocol. All indications at this point suggest that things are moving in the right direction. As scared as we were a few weeks ago at the idea of confronting this disease once again, we're now comforted knowing that we're actively fighting back.

Luca has been holding up well. As expected, his blood counts have quickly dropped to nearly zero, which the older kids describe as feeling like you have an extremely bad flu. Luckily, though, Luca has managed to stay in pretty good spirits, and manages to smile and play through it all. He loves reading books, listening to music, going for walks around the floor, hanging out with his nurses, and playing with medical equipment and supplies (which he prefers to all of his fancy toys). The near-term plan is to nurse Luca back to health over the next 3 or 4-week period of neutropenia, and hope and pray that he remains free of infection during this vulnerable time. There will be a few more tough phases of treatment following this one, but we'll focus on this first step for now. 

We've quickly readjusted to life in the hospital. Living in what one of our friend's called "the fog of planet cancer" can be extremely difficult, but the positive atmosphere created by the 9th floor staff helps immensely. The nurses, nurse practitioners, and doctors, the friends who greet us at the door, take Luca's vitals, bring him books and toys, sing him songs, keep an eye on his nutrition, give him physical therapy, deliver meals, say prayers, keep our room clean, ask us if we need anything, teach us how to knit, and come by with candy on Friday nights...every single person helps keep us going. It's like living in a small neighborhood, filled with people who are in one way or another fighting for Luca's life every minute of every day.

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This experience has blessed us with the opportunity to meet some amazing little warriors and their families. We ask that you keep in your prayers our brave friends who have passed on. They and their families have changed our lives forever, and will continue to be powerful inspirations of strength and hope.

Adrian Urbanski

Ishan Gala

Sienna Cavallo

Another Battle Ahead

A few weeks ago, while home in Brooklyn, we noticed that one side of Luca's nose looked slightly larger and felt slightly harder than the other side. This was the same spot where the leukemia had first presented itself back in January. We raised our concern with the team at Sloan-Kettering. They agreed that there was something going on, but that it could just be a natural bi-product of Luca's face growing bigger. We decided to wait a week to see how things progressed.

So on Wednesday, after a long week of waiting and watching, we brought Luca back to the hospital. Everyone agreed, with heavy hearts, that the growth on Luca's nose had gotten larger, and that the leukemia had returned. We were devastated.

Unfortunately, a quick relapse is very common with infant AML. When the disease makes it's way out of the bloodstream and into the organs (in Luca's case, his skin), there are many places where just a few leukemic cells can hide out and avoid the reaches of chemotherapy. Luckily, Luca's bone marrow, spinal fluid, and blood are all still free of cancer, and we've caught this skin legion very early on. And, as has always been the case at Sloan, the team immediately formed a plan to fight back.

That day, the surgery team made room in their schedule to remove the last remnants of the fungal infection from his lungs, so that we could begin treatment as soon as possible. The surgery went well, and Luca quickly recovered in the ICU across the street. It's amazing how soon he can bounce back after having a major operation on his chest.

We're now back at Sloan, where we'll begin another round of treatment tomorrow. The chemotherapy protocol that Luca will receive was designed at Sloan specifically for patients with relapse AML. Children come from all over the world to receive this treatment. From there, we'll explore additional treatment options, potentially including low-dose radiation and a bone marrow transplant. It's going to be another long, tough battle, but we're confident and hopeful that Luca will remain as strong as he has been, and that this will be one more big hurdle to cross on the way to a cure. In the meantime, since Luca is in such good shape and has one more day before treatment begins, the team was nice enough to give us a "day pass" to take Luca out of the hospital and on a walk to Central Park.

Each and every on of your thoughts and kind words continues to give us strength and courage. We always do our best to pass that support on to Luca, and we know that it makes a difference. Thank you all so much.

Clean Marrow!

For months to come, Luca will have periodic bone marrow tests to make sure that he has remained in remission. He had one of those tests early Friday morning. The few hours it took for the preliminary results to come back seemed to stretch on forever, but we were relieved to see Dr. Steinherz come through the door with a smile on his face.

Luca's bone marrow is normal and free of cancer! We fully expect this to be the first of many clean reports to come.

Photos - July 2008 #2

Short Stay at Home

Last weekend, after another long visit at Sloan, we were given the okay to take Luca home. It's always a little bitter sweet when we leave, because we have to say goodbye to so many good friends. This time was especially tough, since if all goes well we won't be returning to the floor for any more extended stays. So after all of our goodbyes, we once again packed up our bags, took the short drive over the Brooklyn Bridge, and settled back in to the neighborhood. 

A few days after being home, we noticed that Luca wasn't acting like himself. On Tuesday he spiked a mild fever, so we brought him to the day clinic at Sloan for some tests. We learned that his white cell count was very elevated, but hoped that this was a sign of his body fighting off an infection, and not something more serious. We were sent back home after an initial dose of precautionary antibiotics.

That night at around 1am we were woken up by a call from the hospital. A culture had grown back and revealed that Luca had a gram-negative bacterial infection in his blood. These kinds of infections, if not caught fast enough, can become very serious, very quickly. We immediately drove back to Sloan, were re-admitted, and began a full antibiotic regiment.

Thankfully, Luca has responded well to the treatment, and the blood infection seems to have subsided. His white cell count has returned to normal, and he's back to laughing and kicking and keeping a close eye on his doctors and nurses. And there's talk of giving it another shot at going home early next week. Blood infections are unfortunanty common in patients who have broviac lines for extended periods of time. We're just grateful that Luca has been able to weather all the storms that have come his way.

The Walkmen: New Album Benefit Release

The Walkmen have been one of our favorite bands for a long time now. This week, they pre-released their amazing new album, "You & Me", as a $5 download, with all proceeds going to Sloan-Kettering in honor of Luca. The donations will be split between the child life center on the 9th floor and the world-renowned research centers at the hospital. You can download the album from Amie Street here.

A million thanks to Pete, Walt, Ham, Matt, Paul, the folks at Amie Street, and Marisa and Otis for your incredible generosity. We've met many kids who have beaten their disease directly because of treatments that were developed at Sloan. We really can't express how much it means to us and to the rest of the families here.

"You & Me" will only be available as a pre-release download for three weeks, so be sure to grab it now. In our humble opinion, it's the album of the summer, from the best band in New York.

Also check out this interview with Pete.

Bump in the Road

Ever since Luca finished his last big round of treatment a couple weeks ago, we've been hanging out at Sloan-Kettering, waiting patiently for his white cells to grow back. They tend to take their time. Although low counts can make you feel sluggish and sick, Luca has managed to stay active and spend a good amount of time having fun. Such a long stretch without a working immune system, however, has left him increasingly susceptible to infection.

Last week a blood test indicated that Luca had developed a fungal infection somewhere in his body. So on Thursday he underwent a CAT scan (which he slept through) to find out where the infection was growing. The results showed that a significant area of his right lung is infected with fungus.

This is a common complication for patients receiving high-dose chemotherapy, and is encountered often on the pediatric floor. Although it is a dangerous and frightening infection, Luca has shown no clinical signs of any respiratory distress. We wouldn't have caught it so early had it not been for the fungal infection blood test, which was only developed a few years ago. For now, we'll rely on medication to keep the situation from getting worse. Only the return of his white cells, though, will be able to suppress the lung infection. There was a tiny blip in his white blood count for the past couple days, so we're hoping that they'll be back next week. 

Because fungal infections take a long time to resolve, Luca's maintenance chemotherapy options will likely be limited over the next several weeks. We're very grateful that he was able to get through all three big rounds of treatment and remain in remission before encountering this bump in the road. One thing we've learned while being here is that plans change quickly and often, and that taking things one day at a time is the only way to confront the illness. So for now we'll focus on fighting this stubborn infection, and hope that next week will bring white cells and a chance to head home.

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Our thoughts and prayers go out to the family of Randy Pausch, who passed away on Friday. He'll continue to be an enormous influence and inspiration.