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Tuesday, April 22, 2008

A very short and quick update

A very short and quick updateMeditation didn't work and scans without anesthesia for Mr. Inquisitive were a bit challenging. It turns out that Ativan, a drug that normally calms and even makes most kids fall asleep, had the reverse reaction with Liam. He became larger than life with slurred speech. All inhibitions were lost. He was asking every question that popped into his head and had absolutely no reservations asking anyone anything from the radiology tech questions about his hair to more puzzling questions like why hospital beds go up and down. I'll provide more details later, but the quick update is that his CT Scan and the all-important MIBG scan are clean. We're still waiting for the results of the bone marrow tests and urine markers which will come in later this week. Now, back to our regularly scheduled lives....

Monday, April 14, 2008

We have a schedule

It took some time, but we have the schedule for the 3-month tests. Wednesday at 8:20 a.m. is his CT Scan with the icky contrast needing to be consumed by 7:20 a.m. Wednesday at 2:30 p.m. is the injection of the radioactive dye in preparation for the MIBG Scan. The MIBG Scan is Thursday at 9:30 a.m. Friday a.m. bright and early is the bone marrow tests. Here’s the clincher…due a scheduling mix-up, he’ll be doing the scans without anesthesia for the first time. I’m not quite sure how this is going to happen with Mr. Curiosity especially considering how important it is to stay perfectly still and how hard Liam has being anything less than in perpetual motion. The challenging thing is that he’s going through a particularly active time. He is literally going nonstop as he feels stronger and better every day. He has energy he hasn’t had in at least 18 months. The world literally is his oyster and sometimes he just is overwhelmed at all the options in front of him. He might be able to do the CT Scan which is relatively short…but the MIBG is almost two hours long. Oh goodness. How quickly can we teach him meditation?

Kids Walk for Kids with Cancer

Dear Friends and Supporters of Prince Liam,

On the second day after Liam was diagnosed we met an amazing woman named Shirley Staples. Her name and phone number were written on a piece of paper and handed to me by a social worker at Memorial Sloan-Kettering who urged me to call her. Shirley’s son Simon, who today is almost 15, was treated in 1998 at Memorial Sloan-Kettering for stage IV neuroblastoma which is the same disease Liam is battling. In the 13 months since Liam’s diagnosis, Shirley has served the role as confidante, counselor, rock of support and friend. At the end of our first phone call when I literally reached out to her for a lifeline as my world was crashing in on me, I said that I had a feeling she was going to be the angel who saw me through this tough time. It’s a bit uncharacteristic for me to say things like that…but for some reason the words popped into my head and out of my mouth. A few months later, she and I made the connection that we went to the same small, liberal arts women’s college in North Carolina, shared the same major and had several of the same professors. The mascot for our school, Meredith College, is an angel and all underclasswomen are assigned a senior to show them the ropes. (Bizarre coincidence, right?)

A few years ago Shirley’s daughter decided to start a fundraiser for pediatric cancer called, Kids Walk for Kids with Cancer. Since its first year in 2001, the walk has raised almost $525,000. The event is organized by NYC-area students from 6th to 12th grade and has blossomed into one that companies and their employees participate in as well as parenting groups, families, book clubs, etc. This year’s event is being held on Saturday, May 10th. The event starts at 2 p.m. in Central Park, across from Tavern on the Green at W. 67th and CPW. It begins with a brief program that includes comments from doctors who treated both Simon and Liam and is followed by a 4.5 mile walk. Everyone is welcome from babies to grandparents and even pets. We plan on being there and invite you to join us to walk in support of pediatric cancer research.

This year's walk will support research at MSKCC on stage iv neuroblastoma. The survival rate is a dismal 30%, so more funding for research to develop more effective treatments is desperately needed. The walk funds will help the MSKCC researchers keep improving the odds for children with neuroblastoma.

We hope you can join us. Please forward this email to your NYC-area friends and family!! There is also a flyer we can send you if you’re interested or visit the website for the event, http://www.walkforkidswithcancer.org/

Thank you in advance and we hope to see you there.

Gretchen, Larry, Liam and Ella

Monday, April 7, 2008

Pass the Gravy

On Monday, March 24th I took Liam to the hospital for a blood test. After you’ve spent a little time away from the hospital, it’s hard diving back into the belly of the beast. It feels familiarly uncomfortable and yet oddly friendly. Liam seems calm on the outside but I can tell he’s uncomfortable. “Mommy – Can I go to the playroom first before we go to the IV room?” “Mommy – What’s going to happen?” He has an arsenal of delay tactics to avoid going to the IV room. (Who could blame him?) He knows that a trip to the IV room either means a finger prick, blood draw, or accessing his mediport. None of the choices are pleasant ones. He also now understands and embraces the concept of “bad guys.” He immediately thinks he can identify a bad guy and even though he doesn’t really know what “bad guys” do, he knows they exist. The day’s blood test was to see if he had developed an antibody to the mouse antibody or HAMA. Liam has received seven rounds of 3F8 antibodies. Early on in the antibody process we were told that the goal was to receive a minimum of four rounds with each round consisting of five days. We reached that goal back in September. After the fourth round we thought we were in the “bonus rounds.” And then we found out that actually the goal is 6 – 10 rounds. I’ve heard that it doesn’t make a difference if it’s 6, 10 or any number between. Rounds 1 – 4 went by in a slow-motion blur with a feeling of relief when we completed the 4th round without a HAMA. Round five went by without a hitch. Round six was also “routine” and with it a new “whew” of “we made it to six.” And then round seven. Round seven was nothing like any other round. It was the difficult one…the one with Liam in nonstop, agonizing pain that lasted from one day of treatment to the next. Typically pain is good because it shows that the antibody is working. It’s when the pain stops that you need to worry that a HAMA has developed rendering the antibody ineffective. With so much pain during round seven, I wasn’t necessarily thinking “HAMA” but I also never take a-n-y-t-h-i-n-g for granted. So it was with the proper amount of caution and reverence to the cancer gods that I took Liam to the IV room to draw some of his precious O negative blood. Yes, he could be HAMA positive…but with all the pain how could he be?

The way the test works is that if you DON’T receive a call by 6 p.m. on the day the blood from children all over the U.S. is tested for a HAMA, it means the test came back negative allowing your child to advance to the next round. Like the past six rounds, we didn’t receive a phone call that day. I wasn’t surprised, but I also did what I always have done just to make sure and to not take anything for granted and called the hospital the next morning to confirm the phone didn’t ring. When I heard Dr. Kushner’s assistant say, “Liam’s HAMA positive,” I felt like I was going to spontaneously combust. How could this be? How? What do you mean he’s positive? Wait, seriously…he’s positive? That can’t be possible. It can’t be. No. That’s not good, right? It means he’s finished with 3F8 which surely can’t be a good thing, right? Don’t you want to keep getting it to act as an insurance policy? When I asked, “what’s next?” she said to come back in a month for retesting. And that was that…there were no other phone calls, no “congratulations – after 13 months you’re finished with active treatment!” No other phone calls offering an explanation. Nothing. Just a, “he’s HAMA positive.” The day was March 26th, exactly 13 months to the day Liam was diagnosed. 13 months since we started the odyssey - diagnosis, shock, three rounds of chemo, 11 ½ hours of surgery, two more rounds of chemo, 14 sessions of radiation, six rounds of Accutane, and seven rounds of monoclonal antibodies.

I spent the first two days after the news reeling and crying. The tears were almost nonstop…they were always there just spilling over the brim as I tried to come to grips with the news while still having more questions than answers. There were no sobs…just a constant, steady flow of tears. I was left with a feeling that the road less traveled we accidentally found ourselves traversing for the past 13 months came to an abrupt end and we were back on the right course. But, like so many aspects of this journey there were no signs along the way informing us of the change in conditions ahead. So now we’re in a phase I’m now thinking of as “The Gravy Days.” These are the days where, except for three days of invasive (nail biting, agonizing) tests every three months for the next 15 months, life is as normal as possible. These are the days we need to push, push, push to do everything we can to raise awareness and help fund research into more treatment options while we don’t have the time burden of being in active treatment. These are the days I look at both of my children and savor every moment. Isn’t it amazing how one’s perspective can change? Our Gravy Days are a gift of understanding the true value of good health and the opportunity to enjoy it. For Liam it means going to school and reveling being with his fellow musketeers in Pat’s Class. But I do think he on some level understands the value of good health and feeling well. He seems to be very open with his feelings of enthusiasm and affection and frequently greets a classmate with an unexpected hug, cheery “it’s nice to see you!” or similarly enthusiastic greeting, or by eagerly showing off his outfit of the day which could be any number of interesting combinations since he’s selecting what he wants to wear. He lives and loves openly and without any reservations. Sometimes it pains me when I see a classmate understandably being taken aback by Liam’s burst of affection. I hope Liam doesn’t notice and start curbing his enthusiasm. I wonder if he’s like this because he has received so much unabashed love. I hope he lives every day like a gravy day to be realized to it fullest potential. We have no reason to think that the gravy days are only here for a limited period but we are acutely aware of how quickly they can be taken away.

But then the feeling surfaces of the safety net secured under the tightrope Liam has been walking the past 13 months was just yanked away. This is the safety net that still had us doing something, even if only every eight weeks, to scour his body for any cancer cells lurking in hidden recesses. He has done a beautiful job walking the tightrope. He could have fallen so many times along the way but he never so much as even hinted of losing his balance. As goofy as Liam is, and as I hear him make up pretend songs like a new ditty he calls Macaroni sung to the tune of the Hallelujah chorus, he also is incredibly focused. I think he, like me, was focused on the job at hand and getting through chunks of time which he did beautifully. We are so, so, so fortunate to have reached this point. I recently learned about a little girl with a smile that would melt your heart who was the same age as Liam and diagnosed on the same day, same year. Her battle took a different turn and, as of a few weeks ago, is no longer with us. It’s an awful, awful disease that steals children of their chance to live just when their worlds are beginning to open up, and robs families of happiness as they try to figure out what life is like without their child.

So what’s next? Is this the end of the road? Should we as a community of people who have so passionately come together to see Liam through this ordeal disband and resume our regularly scheduled lives? Wouldn’t that be great if it was over? But it’s not and we still have serious work ahead of us. For Liam it’s a transition period of not having his routine disrupted every 7 ½ weeks for injections and a week of painful treatment. It’s a time we rely on faith that everything thrown at his tiny body battling a gigantic beast worked. For us, it’s a time of adjustment, appreciation and “roll-up-your-sleeves” work. It would be nice to sit back and take a breather, but there are too many lives at stake and too much work to do. First and foremost we need to see Liam through every round of tests until June 2009 to carefully monitor him. A potential threat along the road is the dreaded “R” word: Relapse. More children relapse than don’t and let’s leave the statistic at that. I don’t want to talk about it except to say that we know more children who have relapsed than haven’t. The problem with relapsing is that the cancer cells are smarter the second time around and resistant to chemo.

The next round of tests that check him out head to toe is in early April. (My stomach is already gearing up for the waves of nausea and anxiety.) And what’s next on the agenda for kicking cancer’s proverbial behind? Continuing to build the Band of Parents reach and raise money for research to discover more treatment options. We’re not finished by a long shot and I’m still wearing the same earrings that Liam picked out for me to wear on the day he was diagnosed. I don’t have any plans to take them out...at least not until there are more treatment options available for him and every other child.

We’ll follow up on when his 3-month tests are scheduled and the plans for a fabulous fourth birthday party in mid-May which everyone is invited to help us celebrate. As I’m sure one can understand, the temptation to rent out a circus for the ultimate birthday party is certainly there and who could blame us? We’re trying to settle on a Go Diego Go, Curious George or Caillou theme. Right now Diego is winning but it depends on the day. We’ll definitely be serving gravy along with cake.