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Sunday, December 9, 2007

A million things to say but its late.....

Another night where well into the early hours of the coming day, I am still awake.....thinking scheming. The past 5 weeks have been all consuming. Gretchen and I are both truly exhausted yet we must push on. I think we have been averaging about 4 hours of sleep a night for close to 2 weeks. We are running on fumes and when we feel we can do no more something happens and motivates us to push ahead yet again. What started out as me helping found the Band of Parents, has turned into something of a challenge and personal crudade for us. Anyone who knows us would quickly confirm that we are both fierce competitors. We want to win, hate to lose, and rise quickly to a challenge. We have both always been fighters. Never afraid to mix it up even when out gunned. Something one of my dear friends said this week has been stuck in my head. After spending a day working side by side with Gretchen at the baking site she wrote me a quick letter:

Yesterday was so great to be among friends and yummy cookies and all the positive energy and to be able to do a small thing to help beat the big C. Watching Gretch kick ass and take names and smile throughout reminded me of a momma bear (albeit one well versed in pr) whose den and cubs have been threatened. Neuroblastoma picked the wrong family to pick on! Kudos to both of you for actually pulling this off. I am very proud of both of you and for what you are doing.
Much love Kate and Coop

I know now why I have not missed playing Ice Hockey as much as I thought I would. Why we both drive forward and have yet to let anything stand in our way. We have been personally challenged and for us this is a call to arms. Fighting neuroblastoma has become my ice hockey. Like my friend said, Neuroblastoma picked the wrong kid and the wrong parents. Personally I am angry and want my revenge on this coward of a disease that feeds on innocent young children and families. One that terrorizes again and again. One that when your child says his leg hurts, your first reaction is not to wonder if your child fell and bruised it, but instead to think your number one enemy just launched another attack. So we bake and we bake and we share our story again and again and again. It is a sneak attack, a flanking move, a strike of our own this time. We are building an army of supporters who like us, hate to lose! Together we will raise money to fund the insurgency.....research, alliances, medicine, innovative new weapons, awareness. Today we are out gunned and neuroblastoma will win more often that it loses. But each loss motivates us to push ahead, to fight back even harder. One day neuroblastoma will receive the blow that will knock it back on it's heels. Liam's doctors believe Liam's leg pain was from Acutane. This week he seems fine for which we are relieved beyond belief. It will not be the last time neuroblastoma strikes fear in all of us.

Liam was his charming self when filmed for various news segments this week. All are tied to the cookie event and the awareness its helping to create as part of our counter attack. Watch CNN's Your Money this Sunday (today) at 3pm est (during last half hour). You will see your Prince and national coverage of the cookie event and neuroblastoma as well as an interview with Dr. Cheung. Liam also appeared as did Gretchen and the cookies earlier this week on WABC News 7 NY. The largest media market in the United States, during the 5:00 news.
You can watch the video here:
Thank you to all who have helped make the cookies for kids cancer event such a huge success.
A million more things to share but now I must sleep.

Thursday, November 29, 2007

Liam Complaining of Leg Pain.....

The last two weeks have proven to be more of a challenge on the cookie front than we had bargained for and to add further stress things have not been as desired with our Prince. Liam completed his 5th round of 3f8's the week prior to Thanksgiving and then started Acutane the week of the holiday. He was very nauseous all of last week and was not able to keep much of anything down. We of course were concerned since he had not had any issue with Acutane during any of the past rounds and he did not seem to have any flu like symptoms. Anti-nausea medication had little impact and he chose not to eat for fear of throwing up. Liam lost 4 lbs. over the course of two weeks and this was troubling for us to say the least. This week his appetite suddenly returned and the nausea has all but disappeared even though he is still taking Acutane until the end of the week. Unfortunately the nausea has been replaced with something far more scary to any parent who has a child with neuroblastoma....leg pain and a slight limp. The fear this specific symptom strikes in you is all consuming. Liam would not climb the stairs today at school and his loving teacher had to carry him upstairs to the play area. We have been told some kids have severe bone pain while on Acutane so there is some potential reason for his pain other than the first thing that pops into a parent head who is in our situation. Liam just by chance had an appointment today at Memorial for a blood draw to see if he is still HAMMA negative so he can receive another round of 3f8 antibodies (6th round 7 weeks from now). His doctors have been alerted and will see him while he is there this afternoon. I am sharing this with you for the sole reason of sharing the fear of our unknown. Today is one many we will face not knowing if we are to be dragged back down into what can be described as nothing other than hell or if it is nothing to worry about and all due to Acutane. It is ironic this happens now while we are fighting harder than ever, along with the support of many of you, to find away to fight back against this terrible disease. I sit now waiting, worrying, trying to work but hanging on every phone call hoping it is Gretchen. I struggle to find the words to even post and though I have convinced myself it is nothing more than side affects due to Acutane, the fear is real and the feeling felt back in February when Liam was first diagnosed is again present. We of course will update when we know more. Liam is due for his 90 scans and bone marrow tests just prior to Christmas. I guess this is a reminder to continue to pray for him and to keep him in your thoughts. It is a reminder to Gretchen and I that though we have had a small taste of normalcy lately if you take out trying to sell 8,000 dozen cookies, we are always one limp or show of pain away from hell. We need a cure.

Tuesday, November 27, 2007

Cookies for Kids Cancer

The baking is ready to start in just a few days but we are nowhere near where we had hoped to be in terms of cookies sales. Maybe we were too optimistic as to how many the 80 plus parents and members of the Band of Parents foundation would be able to sell? Maybe it is just too much to expect parents of kids with cancer to find the time to sell cookies to raise money for a treatment that may make the difference in their childrens lives. Maybe it would be easier if such funding would be provided by our government like it is for adult cancers, but this is not our reality? If it was we the parents of kids with cancer could spend our extra time with our children instead of helping to develop better treatments. We need your support and the support of everyone you know to make this event a success. To raise the funds needed for the team of reseach scientists at Memoral Sloan-Kettering Cancer Center to begin to develop the humanized antibody and bring it quickly into trials. Hundreds of you visit Liams blog each day and today I ask that you help your Prince by buying some cookies and then asking 10 or more of your closest friends to do the same and so on. Thank you to those who have already ordered and shown your support for Gretchen and her selfless effort to make this event a reality in a matter of weeks for our son and the other children fighting with him.

Monday, November 26, 2007

Thanksgiving for us...

It was nice to be able to spend a few days at our home in New Jersey and to catch our breathe after the hectic weeks leading up to the holiday. Liam just finished his 5th round of 3f8 antibodies and Gretchen and I had been burning the candle at both ends readying the cookie event for the Band of Parents. Thanksgiving is the day when everyone is supposed to reflect on all of the things they are thankful for in their lives. Just as we sat down to dinner it became immediately apparent just how hard this very moment, of this very holiday, was going to be for Gretchen and I. The time when someone would normally say a prayer and thank god for each other, all we have, our health, and for friends and family. Today we just looked into each others eyes and no words needed to be spoken, no words could be spoken. I just looked at her and said...I know...I know...as tears began to stream down each of our cheeks. In an instant anything that needed to be said was said. We are thankful beyond words for how Liam has progressed since diagnosed in February. We are forever thankful for all of you who have cheered Liam on and been there for us for nearly a year now. We are thankful for the dedicated team of doctors and researchers who fight this beast each and everyday. We are thankful for Ella who brings us endless joy and if not for her adoring love this past year, it surely would have been much darker for Liam, Gretchen, and I. We are thankful to have each other to lean on during what is undoubtably one of the toughest tests of physical and mental strength a parent or couple can be forced to endure. We know our lives will never be the same and we will never be able to fully return to the way it was. We are not the same people. We will live with a constant fear of losing our son; of wondering will it come back? We have watched as other parents have lost a child, as lovely children with full heads of new hair, just settling back into the proper world of a being a kid, only to relapse and be brutally yanked back to the world of pain, medicines, hospitals, confusion, and fear. We are thankful for sure but I would not be honest if I did not tell you that we won't be satisfied nor will we rest until we are certain our son is safe and has beaten this unwelcome cancer. We will fight until all children fighting neuroblastoma have a better chance of winning than they do today. You can help. By clicking the following link now http://www.cookiesforkidscancer.org and buying our cookies as gifts this holiday season. We begin baking with an army of 200 volunteers this Saturday and we need your orders. All of you who have followed and been a part of this painful journey can help Liam right now by supporting our efforts to further the development of the next generation antibody treatment. Liam will reject the current mouse based antibody at some point in the future. Without a new humanized version, the treatment options available if he were to relapse as more than half do, are virtually non-existent. Your cookie purchase will directly impact the development of a new treatment at Memorial Sloan-Kettering Cancer Center and it could directly benefit your Brave Prince Liam if he were ever to need it. It is one thing to live with fear and yet another to give into it. Help us fight for Liam and his neuroblastoma brothers and sisters. http://www.cookiesforkidscancer.org/

Monday, November 12, 2007

In Honor of Our Son Liam Witt

Dear Friends and Family,

As most all of you know we have been faced with the challenge of our lives this year as we fight to rid our son Liam of the cancer that has invaded his innocent little body. The reality of his type of cancer, neuroblastoma, leaves us with no guarantee as to his long term prognosis. The grim reality is that more than 50% of the children diagnosed with neuroblastoma relapse, and the survival rate for children diagnosed with high risk disease like Liam is in the neighborhood of 30%.

We, along with other parents facing this reality, find it unacceptable and have decided to act and do all we can to make a difference to improve these terrible odds. As a result the “Band of Parents Foundation” was created and our objective is to raise money to further the cutting edge research at Memorial Sloan-Kettering Cancer Center (MSKCC), the worldwide leader in treating neuroblastoma. As a founding board member and VP of Marketing for the Band, I am encouraged by the research and future potential of treatments currently under development at MSKCC. Gretchen and I feel we must do everything in our power to give Liam the best chance possible and if he were to relapse we want to be sure there are treatment options available that today don’t existent. I have watched as other board members have lost their children and I cannot begin to explain to you the feeling of helplessness and misery I feel each day wishing I could have done more. Motivated by this bleak reality, Gretchen and I have put together an ambitious plan to raise more than $200,000 for MSKCC research. It is the first major event on behalf of the Band of Parents Foundation and it is called “Cookies for Kids’ Cancer.”

We, along with a volunteer army, will bake and sell 8,000 dozen gourmet cookies (96,000 cookies in total) beginning November 16th and ending December 14th. The delicious recipes are from renowned cookbook author and dear friend, Sally Sampson’s recently released cookbook, Cookies. The cookies will be sold for $30 a dozen and all of the proceeds will go directly to research at MSKCC since almost everything related to the project has been generously donated.

I know that most of you are about to begin the tireless search for the perfect holiday gift for all those on your gift list and I thought this unique opportunity to give a gift that not only tastes good but feels good might appeal to some of you. See the attached PDF file for more details.

The cookies will go on sale beginning Friday, November 16th and can be purchased via the following website: http://www.cookiesforkidscancer.org/

You might also want to visit the “Band of Parents” website http://www.bandofparents.org/ to learn more about the foundation we are so passionately involved.

We hope you will pass the email to anyone and everyone you know to help us ensure Liam and all the other children fighting neuroblastoma receive the future treatment options they so desperately need.

Bound by Hope,

Larry & Gretchen Witt

Friday, October 19, 2007

Living life 90 days at a time.

Friday, September 21st closed one book on our journey and began a new one. It was the last day of Liam's fourth cycle of mouse antibodies. (The first four cycles, each cycle is five days, were three weeks apart.) With the end of the fourth cycle, we now move to every eight weeks apart. It also was the day of Liam's second full battery of tests to search his little body for any cancer cells that have escaped chemo, surgery, radiation, three rounds of antibodies and retinoid (Accutane) therapy. Liam will undergo, or should I say endure, this battery of tests every 90 days for the next two years to make sure he is "clean." I have a new way of thinking about this period of testing. Instead of thinking about it as two whole years…which sounds very long to me…I think about it as rounds of tests. We have eight or nine of these tests to go through. We've done two and now have six or seven to go. Superstition won't allow me to mark the dates on a calendar…but my internal calendar is extremely aware of the dates. I try not to think about them, but it's impossible not to. And now I realized we're living life in three-month vignettes. And while yes, I know….life has absolutely no guarantees…it's different when you know you have these dates hanging out there reminding you to live and love.
We left town on Saturday, September 22nd for a two-week "regroup as a family" break to the house we've vacationed the last few years. We always go this time of year when the weather isn't blazing hot and there's relatively little traffic so that part felt normal. What didn't feel good was replaying memories of our trip last year when we were still innocent. I also kept trying to find signs of cancer in my memory's eye when I replayed scenes from last year. Was there something I missed that would have told me his body was being invaded? Was it the day he took an early nap? Was that my clue? Was it the day he didn't seem excited about being at the beach? When was it? When? Why didn't I know? I feel like there was something, some little thing other than being a picky eater I should have noticed. And then I remind myself there's a reason this type of cancer is called the silent killer.
We've been talking to Liam and Ella about going to "the beach house" for months. Liam would spin the globe that we brought from his bedroom in NJ to his new one in his "city home" searching for "his" beach house. He would find it (usually he would point to Fiji – which is far away from the actual location in Massachusetts but not a bad place to have a beach house) and talk about all the things he was going to do from building sand castles to fishing with daddy. We made these plans months ago…I think back in May…when the family we rent a house from contacted us when they heard about Liam. We didn't realize when we made the plans just how na├»ve we were to think we could schedule something months in advance. But now, knowing how many friends are having delays in treatments from complications, we were bloody idiots for thinking we could plan as far in advance as we did. It reminds me of the saying that birds can fly because they think they can. We just always thought we'd be at the beach house when we planned since that's what Liam's medical team projected. A delay never crossed our minds. I suppose ignorance truly is bliss. And except for having to take Accutane twice a day and antibiotics three days/week to prevent a nasty strain of pneumonia that plagues those like Liam who are immuno suppressed, our Prince didn't have any other medical terminology to have to deal with during our stay at the beach house.
Liam and Ella had a wonderful time and seeing how much both children have grown and developed since the last time we were at the beach was amazing. Instead of Ella being a baby, she served as a trusty play companion for Liam. They played, and played and Ella basically did anything Liam instructed her to do. It was heart-warming and heart-breaking to see how much Ella truly idolizes and adores her brother. I would catch her watching him and then repeating everything he did. When she would wake from a nap and didn't see him, she would call out, "Wee-UM! Wee-UM where are you?!" WEE-UM!" They slept in the same room, fought over the same toys, and competed for the "who's going to use the potty first" award which was a hearty round of applause. There are many times Larry and I feel like we have twins seeing how similar in ability the dynamic duo has become. And, true to our journey, for some strange reason that is hard to believe it's only a coincidence…on the morning after our arrival Liam was in his routine of watching Curious George on TV. The Curious George episode airing was an old one…the one where George was at his beach house building sanding castles. It was the episode Liam has seen over and over and asked us question after question about to make sure his beach experience would be exactly like his idol "George the monkey." OK – I know there's a logical explanation as to why that particular episode of Curious George was airing, but of all the episodes that could be airing it was the beach one. Hmm. I think I'll ponder that one.
As the time away from Memorial Sloan-Kettering stretched from hours to days, I found there actually were times I didn't think about "it." Those times were fleeting, but they did exist. And there were other times I looked at my adorable children so full of life, love and energy while the words "CANCER, CANCER, CANCER" screamed in my head. Those are the times I loathe with a passion. I don't want cancer to be a part of our lives any more, thank you very much. I'm done with it. I will never, ever take anything for granted again. I will cherish each moment life has to offer. So, please, cancer, go away. Just please go away.
Most nights of vacation found either one or both of our children in our bed having awakened at some point during the night crying out for mommy or daddy. This is a huge change from life before cancer. Before cancer we were the family who proudly talked about how our children never slept with us. Now we find ourselves with either Liam or Ella soundly sleeping next to us or on top of one of us. It wouldn't be so much of an issue if Ella was a sound sleeper, but instead she's like a breaching whale flopping from side-to-side a dozen times during the night. Many times we'd hear Liam saying, "Ella – Go back to sleep!" The other thing that has changed is how much Liam loves to feel mommy or daddy next to him. Requesting "Twinkle Twinkle Little Star" be sung and feet rubbed are two things Liam asks for every night, something that certainly didn't happen before cancer when he would sometimes put himself to bed with a simple, "I'm going night night" to us.
The big project for Larry during vacation was building a website, the first time he's ever tackled this task, for the Band of Parents group we are a part of. This is the group of 60 families feverishly working to raise money to fund manufacturing of a humanized version of the antibody treatment all our children receive. The belief is that a humanized version would be better because it would be better received and, therefore, more effective. The current antibody, developed by Dr. Cheung at Sloan-Kettering, has been in use for 21 years but is still a phase II clinical trial. As a clinical trial, the hospital can't charge for the treatment and the majority of funds raised to make the current iteration come from Fred's Team, named for the New York City Marathon founder Fred Lebow. In a perfect world, the humanized version would be available for every child battling neuroblastoma, not just those at Sloan-Kettering. It, at least, is our hope that every child can benefit from it.
Teaching yourself how to build a website from scratch with the urgency of knowing several children are in need of a humanized version of 3F8 as soon as it's available carries a certain burden. It was a stressful and time-consuming process, but a necessary one. Two of the Band of Parent members are currently dealing with relapse situations…one of whom Larry is particularly close with whose son is just shy of his fourth birthday. It is for these families that Larry spent hours and hours and even more hours putting together a website. The website is up…it's simple but hopefully effectively communicates the message. The address is http://www.bandofparents.org/.
We very slowly but surely "re-jelled" as a family. Ella got used to seeing both Liam and Mommy around and not off for days at a time. Liam got used to be away from the hospital and didn't once ask, "is tomorrow a hospital day?" And Larry and I got used to seeing each other without one of us wrapped up in caring for Liam.So now we're a few weeks into our second 90-day life. Our first one was from June – September. This one goes until December when Liam's next round of testing commences. We also found out that Liam is cleared to receive a fifth round of antibodies which is scheduled the week before Thanksgiving. A few weeks after each round of antibody treatment, a vial of Liam's blood is drawn from his arm. He now points out which vein he wants to use. The blood goes through an eight-hour test to make sure there are no signs of an antibody to the antibody. The testing always takes place on a Tuesday and it's a nerve-wracking day for us. If we don't receive a phone call by 6:30 p.m., we know Liam is cleared to receive another round of antibody. On the day of the testing, I carry my phone with me and pray it won't ring. And if it doesn't, I still call the hospital on Wednesday to ask if they tried to call me or if I really didn't hear my phone ring. It didn't ring on Tuesday and after I called the hospital on Wednesday morning, confirmed that it really didn't ring. We hope the phone doesn't ring for a long time.
Closing Note: In the time it took to write this post, the little boy just shy of his fourth birthday lost his battle to neuroblastoma and another little boy has relapsed. We need to change this. We can change this. And we have to do it...now.

Monday, October 15, 2007

Liam the Pill Popper

NOTE: I’m backtracking a little. This is a post that has been in progress for a while. I wasn’t going to post it, but then heard about a few children who have had trouble taking pills and I thought it might be helpful to see how we approached the challenge.

It’s always strange going back to the hospital when I haven’t been there for a while. Between August 24th and September 11th, we’ve only been (I think) twice. But I might be wrong…I’m so used to being at the hospital that sometimes I forget about a quick trip to pick up syringes or a Tiffany-sized box of medicine that costs a few thousand dollars. When I pass through the entrance which typically is flanked with smokers (including some patients in hospital gowns and IV poles) puffing away, I can feel myself going into “hospital mode.” Hospital mode is a mixture of steely reserve, endless patience for Liam’s never-ending “why” questions, a slick coating of “I can handle this” to try and let any surprise thrown at me slide down between my shoulder blades without bothering me (at least as far as Liam can see), and a certain amount of trepidation of what I might find. My fear isn’t necessarily related to Liam, I worry about the other brave children we have met along the way. I never want to see or hear that someone has had a setback, but unfortunately that’s quite often the reality.

During my writing hiatus while I was wrestling with the relapse and hospice gremlins, I didn’t mention how Liam learned how to take pills. What I thought was going to be an agonizing experience in frustration was an unbelievably easy lesson.

The thought of having to teach Liam how to swallow the three, fairly large Accutane pills he has to take twice a day for two weeks with a two week break has weighed heavily on my mind since I found out that it was part of the protocol he would be following. I thought about it a lot and kept wondering how I was going to teach my barely three-year old little boy the concept of swallowing a pill without biting it and tasting the nasty contents or throwing up after trying to choke it down. He already was having an extremely difficult time not vomiting when taking medicines that taste “yucky.” How in the world was this new challenge going to be conquered? I’ve known how important Accutane is at attacking immature cancer cells, so the pressure to get Liam on the pill-popping band wagon was extremely important. And the other option out there – drawing out the liquid with a syringe, transferring the contents to another container, and then getting Liam to drink it - wasn’t ideal. As one of the nurse practioners told me, you never get the same amount of medicine and I want every drop of Accutane in him.

About two months before the Accutane therapy was set to commence, I started having Liam be a part of my daily pill-taking regiment. I would hand him the two pills I take every day, allow him to place each pill on my tongue, and take a very long drink, open up my mouth and let him see that it was gone. If he didn’t place the pill in the right place on my tongue, I would have him redo it. If he tried to put it on the tip of my tongue, I would explain why that wouldn’t work. When he would ask me why I drank so much after swallowing a pill, I’d explain how it made the pill go straight down into my belly. Every day, Liam would remind me it was time to take my pills. He rather enjoyed the concept of mommy having to do something medical related. But helping mom is still a long way from him having to take a pill. The prescription calls for two pills in the morning and one in the evening. The pills are egg-shaped and not too big, but definitely not the smallest pill I’ve seen. Accutane comes with all kinds of warnings and its own set of future worries. It also can cause what has been described as “horrid” side effects ranging from skin sloughing off like a lizard and causing painful bleeding blisters, to mood swings so dramatic they leave parents wondering what happened to their child. The drug is closely monitored by the government and parents have to sign a multi-page contract that left me with the feeling that I was at a house closing, not treating my son’s cancer.

On the morning he was scheduled to begin taking Accutane, he had a bone marrow test which is done under anesthesia. Great. In addition to having to teach him how to take a pill, it was going to have to be done while he was anesthesia “drunk.” Off to Sloan-Kettering we went in the morning for the bone marrow extraction from four sites in his pelvis. And then back to the apartment. I kept looking at my watch to see morning slipping away while Liam slept off the effects of anesthesia. Finally, I decided to wake him up which can always be a risky act when he’s in a drug-induced slumber. I apprehensively woke him up. He didn’t immediately start crying. (OK – Good sign.) And then I said, “Honey – I need to talk with you about something,” which is the way I broach any new topic that needs a little more explanation. “Sure Mommy, what do you want to talk about?” It’s our little routine. He knows that if I tell him we have to talk, that it’s something that requires his full 3-year old attention. I explained in my most optimistic-sounding voice that today was a very big day for him. Today was the day he too would have some pills to take. He asked what the pills were. I told him vitamin A. (Not a lie – they really are high doses of vitamin A. He asked why he had to take them. I told him that vitamins helped make little boys and girls grow up to be big and strong. (Not a lie – Accutane will help him grow up to be big and strong.) And then I explained how this was no big deal since he already knew how to take pills because he had been helping mommy. He looked very earnest, stayed quiet and furrowed his brow. He examined the pills and wanted to know why they were squishy as he tried to pop one. OK – Another good learning opportunity. I reminded him how some medicines taste really icky and sometimes make him throw up. When medicine is in a pill, you don’t have to taste it which is a really good thing. He quietly sat considering what I was saying and then recounted how “one time we had to go to the hospital” to take some medicine because he threw up after taking it (the whole iodine experience). When he goes into his recounting of a memory seared in his mind, he talks about every detail. It always amazes and frightens me how much he remembers. He remembered the team of doctors and nurses kneeling in front of his stroller encouraging him to take the iodine drops. He recalled how the nurse with the long hair mixed the icky tasting medicine with cherry syrup to make it taste better. He remembered that everyone clapped for him. He remembered that he was wearing his jammies. He remembered that it was very late at night. He remembered that it still didn’t taste good but that he took it all. And then he cautiously took one of the pills, placed it on his tongue, took a giant sip of milk, and gagged a little bit while it was going down. I cheered. He fretted about gagging and worried he was going to throw up. I told him to drink, drink, drink, drink, drink to make sure it goes down. He took the second pill; put it in his mouth, drank and drank and drank and drank until he couldn’t drink any more; handed me the cup and said, “Done!” And that’s how Liam learned how to take pills. Now, he even takes both pills at the same time. A week later I introduced a new pill to the mix, Bactrim. It’s one we had to stop taking the liquid form of because he would throw up. For months he has been receiving it via IV every two weeks. It’s not an easy pill to take because it’s a tablet that tastes yucky once it touches your tongue. But, he’s figured out how to do it and with that…the hospital leash loosens just a little bit more. When he asked why he had to take this one, the explanation was a little different, “Because Dr. Kushner loves you and wants to see you grow up to be a big boy.” His response was, “Oh, OK.”

And once again, we find ourselves incredibly fortunate that Liam has had no side effects other than a little bit of dry skin on his nose while taking Accutane. We are so, so, so grateful and take nothing for granted. Nothing.

Monday, October 1, 2007

Monday October 1st

Liam on his way to the beach

A smile is such a precious gift.

Liam and Daddy

Liam loves Ella and Ella adores Liam.
And we love seeing our children together.

There is nothing quite so sweet as a day at the beach.

Friday, September 28, 2007

Just Another Day

Note: The below was written by our friend Marge who spent the day with us last Friday, September 21st. It was the day of Liam’s bone marrow test which was the last test in the series he undergoes every 90 days. It also was the last day of his fourth round of 3F8 antibodies. (One round consists of five days.) Last Friday was a particularly grueling day. Liam was fine…in fact was quite the comedian who was the shining bright spot in what was a very dreary day. It was one of those days where everywhere you turned you saw or heard pain. I felt like Edvard Munch’s painting, “The Scream.” I pictured myself being that painting. But instead of screaming, I went into “hospital mode” which combines a protective shield of nonstick coating with invisible covers for my ears and a conviction to keep moving…just keep moving. I also wanted to tell Marge to leave…not because I didn’t want her there but because I wanted to protect her from the bombs of bad news landing all around us. A while back, someone we don’t know but very much appreciate posted a quote from Sir Winston Churchill on our blog that has kept me going through the last seven months. “If you are going through hell, keep going.”

Liam looks like Liam again….well, Liam, about six months older than when this all began. He is the most beguiling little boy, with big intelligent eyes--framed once again with gorgeous lashes-- perched above creamy round cheeks. The good Prince Liam is also a very busy fellow: there are wooden trains to push and plastic cupcakes to bake; phone calls to make on his pink plastic cell, and nurses to greet and converse with. He has mechanical devices to operate and corridors to navigate. Where ever he is and whatever he is doing, he seems to have a purpose and an agenda, and the energy to accomplish it.

Liam is rebuilding his strength. He has won many battles, but there are more to wage. And sadly, wrenchingly, all around him are children in various stages of those battles, and each and every one of them is a reminder of how long and gruesome this war truly is.

This past Friday morning began with a bone marrow test. Gretchen handed him over to the attendants, returned to the tiny “bone marrow” waiting area and with a wry smile said, “Nothin’ like dropping your kid off for anesthesia.” Even the tests have risks, and every time your child goes under, you worry.

Worry and anxiety are palpable here. We wait with a handful of parents. Two mothers stand perched against an empty stretcher. As they talk about how some of the other kids are doing, one occasionally swipes at an escaped tear rolling down her face. A young couple comes in with their four year old son in a stroller. We show him Liam’s “puppies” as his story unfolds…They are “newbies” and like many parents here, live a plane ride away. And like so many others, they came to Memorial Sloan-Kettering because their local hospital couldn’t make their child well.

Coming here is no easy task for them, I am sure. They have two other children at home, and the arrangements to be away—finding someone to care for their daughters, who have their own struggles dealing with their little brother’s illness; taking time off work— must add to the nightmare. Coming here is no easy task for anyone. As wonderful as Memorial Sloan Hospital is, it is a place you never want to be.

Gretchen and I sit knee to knee on the little leatherette bench, engaged with the other parents in calmly spoken, alarming conversations.

We learn about a child who didn’t make it. One mother’s tears stream freely; another grows rigid. I immediately think about how different this girl’s situation is from Liam’s… And I see that when you meet a parent whose child is doing well, you make the comparison with hope. When you hear of a child who didn’t make it -- no matter how different the situation-- it is terrifying.

Most of the mothers are young: neuroblastoma tends to strike toddlers and babies. But one mother looks more like me, and it turns out her 18-year old son, who was diagnosed while a teen, has relapsed. Caryn tells me a story about her son getting annoyed at her, and I am struck by how much he sounds like my 17-year-old. We are, for the moment, just two mothers talking. Then she talks about how badly treatment is going, and how anxious she is about the results of the bone marrow test. My gut turns over. It feels like there is a ball of rubber cement in my throat. I want to comfort her, tell her to wake up, it was all just a nightmare. I want this pretty woman with pain in her eyes to have the worries of an “ordinary” teenage boy’s Mom…tell her she better go tend to her son, because he’s all twisted up over a girl and his grades might be slipping. If only that was what she had to worry about…

And I want Liam to come out of that room, RIGHT NOW so we can leave this awful place. We shouldn’t be here, we don’t belong here. Liam is doing great. We need to run away from here. I want to cover Gretchen’s ears. I want to call my son.

There is commotion from down the hall—a child screaming “NO!!!”. They come toward us: a boy of about five, bald like most of the kids here, dressed only in a diaper, holding on to his IV pole, his mother on one side and a nurse on the other. His legs are thick and stiff; his face red and tear-streaked. Through his screams and cries his mother and nurse try to soothe him, to tell him it is a simple test, to tell him he needs it so he can get better. He sobs in fear and anger and distrust, his swollen legs slowly taking him toward the dreaded testing area. He is beyond reason, and the violence of his distress speaks to all of us. He is the physical manifestation, the encapsulated expression, of the fear and terror and anger of all of this.

The four year old boy comes back, groggy from the anesthesia. He cries on and off, telling his parents he hurts, and he says the doctor shot him. We know what he means—the test requires a big “shot” through the skin deep into the center of the bone in order to extract some of the precious marrow. This child saw the scary looking needle used in the procedure.

Liam comes back and fortunately does not remember anything. He drifts in and out as the drugs wear off. Finally, it is time to head over to 3F8 treatment. As we begin to say goodbye to the people around us, I yearn to fold a blanket around Caryn’s shoulders, to tuck her in to a tiny moment of comfort. It is hard to remember she is a stranger: there is instant intimacy when one’s soul is laid bare. I touch her arm and wish her well.

We arrive in the 3F8 treatment room and I see Gretchen has the routines down to a science. This is her fourth round, and she is a pro. Nurses come in and out, adjusting knobs and tubes and dials and talking cancer-speak with Gretchen as we set up the room. Toys go here; lunch goes there. Liam’s books get piled here; Gretchen changes his clothes.

Liam is fully awake and instantly engages everyone who walks in. He has a million questions and a thousand comments. He is earnest and funny and once again, very busy. I thought we’d read some stories, but there is too much to do. A brightly colored cash register is on the window sill, and it is very important that we figure out how many sounds it makes and how many buttons we can push, pull and turn.

Too soon, the 3F8s begin to flow into his body, and he is in pain. Now it all goes in slow motion as Gretchen rocks him, chanting, “Almost over, almost over, almost over”. The tears stream from his eyes as he cries “Owie, owie, owie”. He asks for “Twinkle” and Gretchen sings, rocking him. “My owies hurt!” he cries, and Gretchen closes her eyes, gently rocking and singing. He has learned to stretch his arms above his head, which helps with the pain…but not enough. “Owie-owie-owie!”, and I can see Gretchen, ever calm and soothing, trying to block the pain with the strength of her love.

Slowly, so slowly, it begins to subside, and Liam finally falls asleep. The treatment is over, and won’t be repeated for eight weeks. Eight whole weeks of freedom from 3F8s, the drug that causes intolerable pain even as it helps make him well.

On the way out of the hospital, I see Caryn walking out of the building with her son and husband. She tells me they got their results, and her son is nearly clear. A smile crosses her exhausted face, but her eyes are vacant. She scurries ahead to her family. They have a plane to catch.

This was just one day. One day in the life of having a child with cancer. Imagine if this is what most of your days are like.

* * * * * *
And now it is several days later and I am back to my life a million miles away from Memorial Sloan-Kettering. For all these days, images of sweet Liam’s bright smile, his little hands putting coins in the play cash register, and his creamy cherubic cheeks as he sleeps flutter around me as I make the beds, cook, write, drift off to sleep. And so, too, I am visited by the more harrowing images of the cancer-laden legs of the screaming child; Caryn’s tear-stained red eyes; of Gretchen gently rocking Liam, her eyes closed and her face wracked with his pain.

Thursday, September 27, 2007

Is this what Post Traumatic Stress Syndrome Feels Like?

I’m getting that “deer in the headlights” feeling again. (Someone, anyone…please talk me off this cliff.) We continue to be on a good path – all of Liam’s tests came back showing no evidence of disease but we’ll repeat the battery of tests in 90 days – yet everywhere we turn we keep hearing of another comrade who hit a bump in the road, is barely hanging on or has fallen. My heart breaks and breaks again a dozens of times a day thinking about all the precious lives that are in jeopardy including, ultimately, our Prince Liam. I wake up several times a night in a panic realizing I was dreaming about one of Liam’s fellow fighters. The image that keeps coming to mind is the scene in Finding Nemo where Nemo’s dad and Dory are swimming through the field of poisonous jellyfish trying to avoid the dangling tentacles. It looks like an impossible journey but somehow, they safely navigate the minefield with only minor bumps and bruises. I constantly feel like I’m on alert avoiding a sneaky dangling tentacle. I constantly feel like I’m watching every move very carefully. I’m measuring everything…he ate well one day, he didn’t the next, he napped for an hour one day, and three the next. And then I have to remind myself that Liam just wants to be a kid playing (and, at time torturing) his sister. He’s questions everything and wants to have a ready explanation for why a doctor needs to “take a little blood” or why he has to take a pill. (The one answer that always stops his line of questioning is, “Because Dr. Kushner loves you.”) I’m still finding the need to give him just enough information to answer his question but not too much. My explanation for the bone marrow test was that Dr. Modak needed to take a little blood in a funny area that might hurt which is why he gave him the white medicine. Liam was OK with the explanation and it sort of is true since bone marrow ultimately is big part of blood, right? I heard another mom telling her four-year old son making their first trip to Sloan-Kettering that the doctor, who was a stranger to this sweet little boy, was going to take some bone marrow. The little boy’s fear and terror spilled over from him and gripped my heart so tight it was hard to breath. I don’t think Liam is ready for me to explain the concept of bone marrow. Or maybe I’m just not ready to.

On the day of Liam’s MIBG scan we arrived early at the Day Hospital. Liam was still in his beloved one-piece fireman jammies curled up in a ball in the stroller with his four puppies, pillow and super soft yellow blankie along for the ride. The waiting area was empty – a sight only seen very early or very late at night. Just as we were walking down the corridor next to a darkened playroom, the orange door to the doctors offices opened and out walked Dr. LaQuaglia. We haven’t seen much of him lately which is a good thing for us but also means he has been in the operating room a lot. We exchanged hellos, he was genuinely happy to see Liam with a full head of hair, and then he started to walk away. He stopped, looked at me as if he was deciding if what he was about to say was a good thing, and then asked if I’d be willing to talk with another family that was a recent diagnosis. My response was immediate. “Absolutely.” Dr. LaQuaglia left and came back with a very tall and imposing looking man who looked fragile enough to blow over with a quick puff. Introductions were made. Dr. LaQuaglia left. The man started to cry. I grabbed his hands and tried as hard as I could to hold back the tears but, ultimately, was unsuccessful. When he caught his breath, I looked hard into his eyes and said, “You can do this. You have to do this. Your child needs you.” I introduced him to Liam and told him when Liam was diagnosed. He cried again and reached down to feel Liam’s hair knowing that his son was about to lose his. A bed used to transport patients to the operating room passed by us and I recognized the person pushing it. The dad told me they arrived in New York the day before. They had taken their son to the doctor on Monday, had a diagnosis by Tuesday, and were on a plane to New York from Miami on Wednesday. And his words brought back all the horrors of the first few weeks of Liam’s diagnosis. The terror. The fear. The disbelief. The utter horror. The feeling of bile in your throat and a stomach in a constant ball of intertwining knots. And then I heard the screaming. Blood curdling screams of terror from a little boy yelling, “DON’T LET THEM TAKE ME! I DON’T WANT TO GO! MOMMMMMY!!!!! MOMMMMMY!!!!! NOOOOOO!!!! MAKE THEM GO AWAY!!!!!” My blood turned to sludge and I wanted to run away with Liam to protect both of us. But I stayed. Out rolled the bed carrying a very tan looking mom clearly wearing the same clothes she had worn the day before. Her son was impaling himself into her chest with his arms wrapped around her neck and legs around her waist. She looked terrified and lost. The bed stopped in front of us. The boy continued to scream. Liam asked what was going on. I kneeled down in front of him and in my calmest voice said the little boy was scared because he was going to have to give a little blood. Liam told him not to be scared and then started to recount how it doesn’t really hurt, just feels “squeezy.” I put my hands on the mom’s legs to try and force strength from my body into hers. Her legs were frigid. She looked at the stranger holding her legs. I stared into her eyes and whispered, “You can do this. You can do this. Be strong.” Her eyes locked onto mine and we stared into each other’s eyes. I wanted to look away. The pain in her eyes was so raw, so fresh, so difficult for me to see. I felt the scabs on my wounds ripping away and a fresh drop of blood coming out. It is so hard to go back to those days of terror. But I had to do it for her…this woman in her summery outfit plucked from her life into this horrible one. They left. Liam and I proceeded about our routine for the scan that is the most definitive one. The scan that takes more than hour and leaves you with a block of time to let your mind wander. I don’t think I can begin to explain how hard it is to feel your child succumb to the effects of anesthesia and then turn him over to the care of others. It’s a completely unnatural, unnerving feeling. It’s just not right.

While Liam was undergoing his scan, I pushed his empty stroller to the sixth floor to see the family from Miami. Mom sat huddled in a ball on the sofa. Dad sat in stunned silence. I took a deep breath. I didn’t want to be there. I didn’t want to go through their pain with them. But to not help them through the very, very dark days wouldn’t be right. We talked. We cried. We hugged. I tried to give them strength. I found myself in a strange-feeling overdrive mode powering through my own pain in order to give them something to move towards...a child in the 3F8 phase of treatment. I remember when 3F8 was first explained to me how it seemed so utterly far away that is was a place we would never reach. I wanted them to see they could make it. And when I left I hugged the mom…tight…and whispered in her ear that I loved her and would get her through this.

And then I went back to nuclear medicine, picked Liam, his puppies and pillow complete with the magic stone that saw Bob Woodruff through his recovery up from his anesthesia slumber, prayed to the machine to give us a good result, took Liam back to the apartment, and went to work.

Our early days keep crashing in on me. Angry snapshots of words and images keep interrupting me. Words and sounds I never want to hear again. Words that I buried deep inside of me. I know how that mom feels. And I would do anything in the world to take her pain away. Anything. I haven’t been in a war between countries or races, only between cells, but I think I understand why people who have been in a war don’t like to talk about their experience. Sometimes it’s just too painful to relive.

The next night I brought the mom a “welcome to life in the hospital” care package. I included my favorite comfy clothing that I wore in the hospital – the ones that look decent even after sleeping in them. I brought the softest t-shirts and jammies I could find for her son. I brought her lots of socks (a requisite), gum (a quick way to “brush” your teeth when getting to a sink just isn’t possible), a supply of Crystal Light single portion mixes (what I lived on in the hospital), hair ties (can’t have enough), lotion (lots of lotion needed for chemo-dry skin), socks for her son, laundry detergent, a shower bag with handles so that she doesn’t have to rest it on the floor of the one bathroom with a shower shared by more than 35 families, and all the other goodies that were brought to me by friends in the early days. It felt good to pass along the knowledge of how to get through the first few days to her. It felt good to help. It felt horrible to be back in those early days.

As a community circling Liam, we have come so far. The word cancer doesn’t scare us the way it did when we all first heard it. It’s still not a nice word, but hopefully doesn’t leave us with an urge to turn a blind eye or run away. Our community has circled the wagons and protected us as we’ve navigated the waters. You’ve been there for us. You’ve fought the battles with us. You’re cheered us on and boosted us when we were down. I don’t know how we would have made it without our community. And yet we still have a longer road ahead of us than the one we’ve already traveled. As a community, I’m so impressed. We are pretty darn awesome. And as a community, I think we’ll figure out where we go from here. We’re still very much in the thick of the battle, but if we can do something to effect change then it’s worth the effort. We’re formulating our next steps but an immediate thing we can do is support the Conquer Childhood Cancer Act that is currently in committee. You can click on the links below to see if your representatives and senators are signed up as co-sponsors. The Act is the work of Congresswoman Deborah Pryce who lost a child to cancer…I believe the same kind that Liam is battling.


The Conquer Childhood Cancer Act is due to be discussed in committee soon. If this bill is signed into law, it would mean $150 million towards pediatric cancer fuding. It's especially important to contact your representatives to see if they are supporters of the bill. You can check if your REPRESENTATIVE has signed on here:

You can check to see if your SENATOR is a cosponsor here:

For more information about the Conquer Childhood Cancer Act, please visit http://www.curesearch.org/ for "ready-to-send" e-mail letters to reps and senators.

Thursday, September 13, 2007

Thursday September 13th Update

We’re emotionally spent but have some news to share.
  1. Liam was cleared to receive a fourth round of 3F8 antibody treatment next week. This is very good news since you want to have at least four rounds (a round consists of five days). When the nurse practioner told me, my knees buckled and the tears of relief immediately flowed. Even though I was confident, it’s still something that weighs heavily on you until you hear the words, “You’re good to go…see you next week.”
  2. The Prince’s CT scan on Wednesday was clear with no evidence of relapse. Always the ever-involved patient, he insisted on pushing the syringe with the anesthesia medicine. As he was pushing he announced, “I like this stuff. It makes me feel good.” OK – I guess he does realize what’s happening with anesthesia.
  3. The all-important MIBG scan…this is the long one that takes over an hour and requires an injection of radioactive dye the day prior…took place today. This is the big scan that I think every parent with a child fighting neuroblastoma dreads. Liam was in rare form this morning – wearing his one-piece fire truck jammies to the hospital (we had to be there by 7 a.m.) and thanking the cab driver for a “safe ride to the hospital.” We received an e-mail from Dr. Kushner this afternoon and it’s also clear. Yes, this is good.
  4. Liam is planning his future. He decided yesterday that when he grows up he wants to be a fireman, a doctor and have a baby in his belly. He has been consistent about these three “career” paths…two of them I can definitely see happening for Liam…the third one might be a little bit more challenging but if anyone can do it, I’m confident Liam can.

Next up…results from the 4-hour urine collection test (Liam thoroughly peeing in a container and Ella was beside herself that she couldn’t participate), a week of 3F8 antibody treatment beginning 9/17 (let the screaming begin), and a bone marrow test on Friday, 9/21.

And then in 90 days, we’ll do these tests all over again.

Tuesday, September 11, 2007

Another Brave Prince

Toby is a little boy who was diagnosed with Neuroblastoma about a month after Liam. We share a special relationship with Toby and his parents that only cancer parents can truly fathom. The depths of this often unspoken bond run deep and each others trials and tribulations are shared and felt as if they were your own. I checked their blog tonight and was happy to see they had settled into their new home and Toby was recovering from a recent surgery. I came across a post on Toby's site from his Saba or Grandfather and his vivid and moving entry about his grandson. I was deeply moved and had the urge to share it with all of you.

From Saba:

Toby is an extraordinary human being. Throughout his lengthy ordeal, he has, incredibly, preserved his smart, sharp intelligence, his sense of humor, curiosity, good natured complexion, and, short of a better term, his stoicism in the face of suffering. It is he, to my mind, who enables his parents to be such remarkable people.

Subjected to cruel and savage treatment, consisting in being killed slowly and then saved at the last moment, strengthened for the next killing session, cycle after destructive cycle, operated again and again, disfigured physically, he has managed to preserve his amazing character intact and to convince those he comes into contact with of his divine imprint. He seems a living instance of the separation of body and soul.

It is hard to believe, but true nevertheless, that, even in his misery, the barely four year old boy has preserved his gracious generosity (and I know precisely what I am talking about) and the ability to escape, at least occasionally, the world of suffering, which is his share since last April.

I write these lines with great difficulty, but they reflect truthfully my deep conviction that what I describe is entirely accurate, though inadequate to convey convincingly Toby’s unusual personality.

I hope and pray he will eventually be cured of his awful disease and that the cure will not affect too heavily the life of this remarkable boy.

Thank you Toby's Saba for putting into words the spirit of an amazing boy who like so many of these kids endure what seems the impossible. We keep Toby and your family in our prayers and by sharing your words with our friends and family I expect the heavens to hear plenty more prayers for your precious grandson.

Good night to all......


Sept 11th, Scattered Thoughts…

It’s Monday night. It’s the night before. Tomorrow begins another odyssey. Tomorrow afternoon we’ll trek to the hospital so that Liam can be checked out and over to be cleared to receive anesthesia on Wednesday for his CT scan. At the check-up, we’ll receive a syringe filled with the horrible-tasting contrast with the instructions to mix it with 8-ounces of clear juice and have it completely ingested two hours prior to his CT (it’s set for 11:30 a.m.) but not too much before because you don’t want him to pee it out. This is the lovely tasting potion that takes our collective efforts of cajoling, pleading, reasoning, joking, tricking, hassling, begging, and ultimately urging Liam to drink. We’ll also pick up the equally horrible tasting iodine drops he has to take to protect his thyroid from the radioactive dye that’s injected into him at 2 p.m. on Wednesday in preparation of his MIBG scan on Thursday. The iodine needs to be taken two hours before the radioactive injection. But as I’m writing this, I’m hearing the words, “Houston – We have a problem” in my head. We have a problem because if his CT is at 11:30, he won’t wake up until around noon. And if he’s supposed to receive the dye injection at 2, I’ll have to force him to choke down the horrible tasting iodine as he’s coming out of an anesthesia slumber. The last time he drank the iodine drops he threw up which prompted a late night visit to the ER. That trip was the one where Liam was surrounded by a circle of nurses and doctors cheering him to “drink, drink, drink.” He did…only after it was mixed with sweet cherry syrup and he clearly got the picture that this was a not an optional activity. There are all these “little” things to deal with over the next two days which serve as great distractions from the bigger picture news…what the scans will show. The CT and MIBG scans will be good indicators (but not totally definitive – a four-hour urine collection and bone marrow aspirates complete the picture) to make sure he’s still clear of cancer. Every 90 days for the next two years we’ll have to undergo the regimen of these four tests. Every 90 days we’ll be on the pins and needles ride. Every 90 days we’ll be plunged back into the deep waters where you wonder if you’re going to be swallowed up or continue to swim. I’d like to say it’s not fair, but then again who asked me if it’s fair? And really, who cares? It just is and our job is to keep moving forward and keep Liam on the path of being Liam.

This past weekend Liam had a play date with Ella, one of his playmates from preschool. Ella arrived and we immediately set about a finger painting session. Liam and Ella sat next to each other on a bench at a picnic table shaded from the sun by a giant umbrella to protect Liam’s Accutane-sensitive skin. (The warning says to keep out of direct sunlight when taking Accutane, not an easy thing to do in the summertime to a 3-year old.) Liam didn’t want to sit on the other side of the table. He wanted to sit right next to Ella. And as they were sitting next to each other, Liam would lean over and whisper in Ella’s ear and they would both giggle. It was the most precious sight to watch my sweet son who has been through so much enjoying a perfectly innocent moment with an equally innocent child. The play date really got going when Ella discovered Liam’s drum set. The two of them gleefully drummed to the beat of their own drummers standing on opposite sides of the drums. They were thrilled and I couldn’t stop equally beaming and crying amidst the dual drum solo. Later in the day we were visited by some dear friends and their four-year old and almost six-year old. Liam played, and played, and played until he told me that he was “so tired” and needed to take a nap. I don’t think I will ever take for granted the beautiful sight of a child just being a child.

When I reflect on what Liam has been through the past 6 ½-months, it’s dizzying. We’re lucky to have him here. Very lucky. It’s even more amazing to see how Liam is still sweet Liam. But it makes me very sad that he’s a wiser Liam who isn’t quite as innocent. He asks a lot more questions now. He always accepts my answers, but he wants to know more. He wants to know why Dr. “Koosh-ner” wants to see more pictures of him. He wants to know why he has to “give a little blood.” I can see where these questions are going and I’m not quite ready. Liam and Ella have taken to hugging each other quite a lot recently. (And yes, they also do a lot of sibling bickering.) But to watch the two of them hugging is oh so bittersweet. I can’t imagine Liam without Ella or Ella without Liam. They are two peas in a pod and, because they’re only 20 ½-months apart, are like twins. What one does, the other one does. What one wants, the other one wants. Ella does everything Liam does and Liam wants anything and everything that Ella has.

Lately we’ve been doing a lot of dancing in our house. A toy plays a song and Liam immediately instructs us all to dance. And dance we do. Tonight we danced in the kitchen after Liam forced a toy to play its reward song. Over the weekend we danced to the opening of Curious George and danced and sang to the opening of Caillou. We dance for Liam but sometimes it’s so hard. But Liam grounds us and reminds us to live in the moment. The strange thing for me is that I don’t have a hard time when I’m with him. It’s when I’m away from him that I find it so difficult to live in the moment. We visited the fire station tonight. We go at least twice a week. And the routine is the same…Liam walks in as if he owns the place, he does a quick check on his locker to make sure everything is OK, and then either tries to find a willing firefighter to play foos ball with him or heads to the kitchen for some “fireman ice cream” (ice cream served in a mug). We love our guys for treating Liam like just a regular “guy.” They never treated him differently, opened up their hearts (and freezer) to him, and have always welcomed him with a “Hey Liam!” greeting. Tomorrow is a new day filled with new opportunities to enjoy, love and be loved by our children.

Friday, September 7, 2007

Friday September 7th Update

We haven’t updated recently, but Liam is fine. He has grown; gained weight (size 3T pants FINALLY don’t fall off of him); learned how to take pills like a champ; and has a full head of soft, gorgeous hair.

We’ve been hit with several weeks of the words “relapse” and “hospice” swirling around us. Everywhere I turn, I hear those dreadfully frightening words. It’s terrifying and incredibly difficult to not take on the stresses and fears of other families as your own. It’s hard to not feel paralyzed as you wonder if those words are going to enter your life. It’s hard to try and function in two worlds – the “normal” world where conversations tend to relate to “he said/she said” ones and the one where cancer and death is constantly nipping at your heels. It’s hard to stay focused on being your son’s cheerleader and answer his endless stream of “why” questions when in the back of your mind you have a constant loop in your head playing the names of the children who have relapsed or are dealing with setbacks. It’s even harder when you learn that some of those children lost their battles…children who both Liam and I knew and played with in the Sloan playroom. It has left me, at times, wondering if this is all a big joke that’s being played on us parents because no one survives. But then I think about Simon and Samantha, two long-term survivors, and I regain my sense of balance. It’s also hard to not feel numb. Last week as I was getting into a cab to go to a meeting, I slid on the freshly Armoralled seat. As I was sliding, my right foot jammed into the underside of the front seat, caught a piece of metal and ripped of my big toe nail. At first I thought I had just cracked the toe nail, but as I was wiping away the blood I realized what had happened. I asked the cab driver if he had a napkin. He handed me a roll of paper towel. I squeezed my toe with a makeshift tourniquet to get it to stop bleeding. It did. Sort of. Every few minutes I’d have to wipe away this blister-fluid-like substance oozing from my toe. But I went to my meeting and didn’t even mention the incidence. A few days later I visited a doctor to make sure all was OK. He looked at me in disbelief when I told him the story. He couldn’t believe I went to my meeting and proceeded to recount stories of people in excruciating pain after doing the same thing. And I explained that when you’ve been through what I’ve been through with Liam since February 26th, you just become sort of numb to pain. So I’m numb. But today I can write. Today as I was getting into the elevator at Sloan to take Liam for a blood draw to see if he can progress to the fourth round of 3F8 treatment, I met a mother who was also bringing her son upstairs. We met crouched down while she helped me pick up the mess of French fries and ketchup that Liam spilled in the very crowded elevator. We talked as we walked off the elevator, quickly discerned that we were on the same cancer “team,” and she told me that her son was on his 13th and final round of 3F8 and is 2 ½ years out from his diagnosis. He’s doing great. I needed to meet her. I really needed to meet her. She then took me to meet another friend whose son is also 2+ years out and is also doing great. I needed to meet her too. The moms looked happy and relaxed, not anxious and scared which is the normal look of an adult in the Pediatric Day Hospital. One mom recently lost 75 pounds and explained that after focusing so intently on her son for the past 2+ years, it was time for her. And they told me about other moms of children with neuroblastoma who have reached the 2+ year anniversary and are doing well. While this revival was going on, Liam was off in the playroom with two volunteers playing with Play Doh that he decorated with glitter, and making a very long tail of string that he decorated with pom poms on the end and attached to the back of his shorts. The person who has been with us since the beginning, Teres (the director of the child life program), was there to help Liam in his quest to make the perfect tail. He was perfectly happy to be without me, but I could see him keeping a close eye on me. That was the good part of my day. The aggravating part was an unnecessary 3-hour wait for a blood draw that takes less than five minutes, a testy conversation with one of Liam’s “Emily” nurses as I tried to explain my frustration on her deaf ears and was met with an “I can’t please everyone” disclaimer, and having to hold Liam still as he cried in pain and fear as a needle was inserted into a vain in his arm and three tubes of blood were drawn. But how did Liam handle it? After he finished crying and allowed me to put him in his stroller, he looked at me and said he was “almost happy” but that it “hurt when it was going in.” And about five minutes later he announced, “Mommy – I’m happy now.” I’ve wanted to write and have a draft of an update I’ve been working on for weeks, but my fear overcomes me that talking about how well Liam seems to be doing will anger to Gods of Good Health and it will all turn against us. All of the sudden I got scared to write and, to be honest, I’m still scared but I don’t want our silence to frighten anyone. I think I’ll be scared until next Tuesday evening when we find out if Liam can progress to the fourth round of 3F8 treatment. And then, I’ll be scared until we hit that two year mark…and then scared until we hit the five year mark. But in the midst of all this fear, we try and stay in our little bubble of living a normal life. It takes an inordinate amount of energy to stay focused on the present. It takes an inordinate amount of support from our extended family, our friends with the unwavering support, to keep it all together. I still believe in the deepest recesses of my soul that Liam will conquer cancer and I’ll be a veteran cancer mom encouraging and inspiring a junior cancer mom to hang in there. But until we get through an MIBG and CT scan next week, a fourth round of 3F8, a four-hour urine collection, and bone marrow tests on 9/21, I want to be quiet. We’re so close and I just don’t want to rock the boat and stir up the angry waters. We very, very much need our support network to stick in there with us.

Wednesday, August 8, 2007

Wednesday August 8th Update

Liam is having surgery today to switch from the exterior central line he has to one that is under his skin. While it's a "simple" procedure, it's still 1 1/2 - 2 hours of time in the operating room. I was awake a lot during the night thinking about the decision we made on behalf of our son in order to allow him to take yet another step towards leading a normal life, but while still keeping close ties to the hospital. A mediport, what he's having inserted today, means no more dressing changes. Good, right? It also means he'll be able to swimming abd take a bath and shower, all things he hasn't been able to do. OK - Another "good", right? It also has a lower risk of infection. More good. And it only needs to be cleaned with Heparin once a month...not that right now we are spending more than a month away from the hospital. BUT, it does mean he'll have to have finger sticks with a needle to give blood samples. Not good. And it does mean that when he is accessed for a week of treatment, like during a week of 3F8, he'll need to endure a needle being poked through his skin and a layer of muscle to get to the port. Really not good. But everyone I've talked with....and I've talked with a lot of moms, dads, kids, all say a mediport is the way to go. Liam isn't so sure. On the one hand he's very excited about the prospect of no dressing changes and to be able to go swimming. On the other hand he has become somewhat attached to his "tubies." And as I'm getting ready to take Liam to there is a thunderstorm raging outside. His surgery is scheduled for 9:45 a.m.

Tuesday, July 31, 2007

Tuesday July 31st Update

Round two of 3F8 treatment was about the same as round one, except with enough experience so that it wasn’t such a shock to the system to see our little guy in pain. The pain for round two was different. Liam actually said, “owie owie owie” this time instead of just saying he wasn’t comfy. He seemed to have more discomfort. He despised the daily morning injection of medicine to stimulate white blood cell production. The process required Larry restraining Liam so that I could line up the tip of the needle with the small tube in his arm all while Liam screamed, “WAIT – WAIT – WAIT – WAAAAIIIIITTTTTTT!!!!!!” He also was nauseous almost every day. Most of the time he would warn us throwing up, but not every time. On Tuesday, the day I had a friend visiting who hadn’t yet seen Liam or been involved in the world of pediatric cancer first hand, there was no warning. On that day, the remains of a slice of pizza, chocolate chips, and milk went all over me and soaked me down to my underwear. Liam and I have been down this path of throw up…he and I know what to do. I found myself more concerned for our visitor knowing that the scene might be uncomfortable for her from both a sight and smell perspective. To be covered in throw up didn’t bother me…I’m used to it…all I wanted to do was tell our visitor that it was OK and get some clean sheets to drape over me so that I could keep holding Liam who was saying in his slurred narcotic-induced state, “oh no mommy…oh no mommy.” I was smarter after the first throw up session…I added an extra change of clothing for me to the hospital bag. One day he made it through his time at the hospital without vomiting, but couldn’t make it home. Luckily the cab we were in was stopped at a red light and Liam gave me enough warning so that I could open the door and let him throw up onto the street instead of in the cab. When the light turned green, I told the cab driver that he wasn’t allowed to move. We were the first car at the light. Cars were honking behind us. He didn’t move an inch. I kept trying to comfort Liam as he threw up over and over again onto the street.

His evening pain, what’s referred to as residual, wasn’t as bad in the evenings as it was the first round. But, he still was pretty out of it and wanted to be comforted and coddled. Most nights were spent with Liam falling asleep on top of either me or daddy. And, true to Liam spirit, whenever he did have residual pain he refused to take any pain medication.

The routine through Thursday was the same - go to the hospital; do our session of pain; hold Liam in the exact position he indicated was the most comfortable which usually was one of discomfort for the holder; wait for Liam to say he was recovered enough that we could leave the hospital (he doesn’t like it when you try to move him too soon); come home; comfort him as much as possible; and then go to work. On Friday in an effort to avoid a throw-up session in the cab, we walked home. Liam slept the entire time amid cars and trucks honking, the bustle of people walking by him, and going down and up nearly 50 sidewalk curbs. And when I saw people looking at the little boy sacked out in his stroller, I wondered if they were looking at him because of the slice of Americana in the midst of Manhattan or because of Liam’s thin hair. Most of the time I avoid the look in people’s eyes. I’ve had too many instances of seeing people glaring and staring at our Little Prince which makes me feel fiercely protective, angry and sad. I also have a hard time looking at other toddlers being pushed in strollers by nonchalant parents or nannies. It makes me profoundly sad knowing we will never be able to basque in the bliss of good health. We will always have the fear of cancer nipping at our heels. But then there’s another side of me that is much, much more aware of everything that my children do…everything is more precious. Every smile. Every hug. Every cry. Every “I love you.” Every time he wants to hold my hand. I find myself drinking in and savoring everything with much more awareness.

Overall the week was one where on some days I heard the screams of pain from other children, but on other days I didn’t. There are parts of me that are just numb and others that are acutely aware of everything.

We met Daddy and Ella in front of the New York Public Library on 42nd Street and walked home together. From the minute Liam was aware that Daddy and Ella were near, he wanted to be able to see them even if it meant taking up most of the sidewalk with side-by-side strollers. And then Daddy mentioned the fire station. Liam finally woke up enough to show interest in something. And as we were deciding whether or not he was up for a visit, Liam decided for us by pointing his finger in the direction of the fire station. So off we went. And when we arrived, Liam got out of his stroller and started his inspection of the “his station.” It was like watching a butterfly emerge from its cocoon. He wanted to see everything and then asked for Fireman Milk, Fireman Chocolate Milk, and Fireman Ice Cream. And the guys at the fire station treated Liam as just one of the guys. And for that refuge away from stares….we are so incredibly grateful.

Liam’s expressive eyebrows and enviable long eyelashes are back. And you can see a fine layer of hair growing back. It’s very short but it’s growing…every day it gets a little longer. It’s still hard to tell what color it is but it’s definitely coming back. Next week we have a break from the hospital We’re there on Monday, July 30th, for a bone marrow test that is done under anesthesia and on Thursday for a blood draw in conjunction with the start of Accutane. Yes, Accutane. Our next challenge is to figure out how to get three pills of Accutane down Liam every day. He’s three. He doesn’t know how to take pills. But Accutane has been found to be very effective in attacking immature cancer cells…so somehow we’ll need to figure out how to deal with this challenge. I’m sure Liam will help us.

Someone recently noted that we don’t seem to be encouraged by how well Liam has done. It’s not that we’re not encouraged but we’re also aware of how relentless this cancer is to not be guarded. There isn’t a doubt in my mind that Liam will win this battle and that we’ll be watching him graduate from Dartmouth in 2025. There have just been too many strange coincidences, signs, overwhelming outpouring of support and amazing progress by our Little Prince to not believe that he isn’t going to be the next cancer researcher. But we’re also not at a point where we can relax. We are still very much in the thick of the battle and trying to figure out how to deal with this new reality which requires straddling two very different worlds. We’re not happy and we’re not sad. We’re tired. We’re worn out and we have little tolerance for things that truly aren’t that important. We’re trying to take everything as it comes but if you’re someone who likes order, this new reality can be tough to accept. We’re also still very engrossed in the scary world of the hospital where life and death are much more immediate. It’s hard to see the future because everyone we’re with is in the same boat that we are – a boat that is floating but still too close to the seas where it capsized to be a memory. But I can hear words of encouragement being used by our doctors which of course bolsters our spirit. For the first time, one of the particularly cautious doctors talked about a life outside of the hospital that was waiting for us. To hear those words was a big deal coming from a doctor who typically holds back on any words other than caution. We’re not doing any counting of chickens yet…we love our son too much to make the blind assumption that he’ll always be here. We do, though, see a time when we can go to London to meet his pen pal and feel comfortable being far away from the hospital. And we do see a time when Liam’s first words after he wakes up aren’t, “I’m ready to go to the hospital.”

And now, as we struggle to figure out this balance between what was and what is we also are figuring out what next. What do we need to do to make sure the meager $2.1 million in pediatric research funds that were redirected to the war in Iraq are given back to researchers who have dedicated their life’s work to children? Do we forget the government and do it on our own? I’ve told friends that I feel like my whole life has been a dress rehearsal for this experience. Pediatric cancer needs us. More than 80% of children who are battling cancer are in some sort of clinical trial…just like Liam. And yet the advances that have been made in pediatric cancer are astounding. Again I find myself questioning if it’s all just lip service that children are our most precious resource. If they are…why are we not supporting them more? What do I need to do to change this?

Friday, July 27, 2007

Friday July 27th Update

Radiation week. In a period of seven days, with a two day break for the weekend, Liam was under anesthesia 14 times while he received 14 rounds of radiation. Each session was short…fewer than five minutes…but it seemed like an eternity knowing that his little body was being pummeled with dangerous beams of radiation precisely pointing at the site his tumor was located. His body now sports tiny permanent tattoos that helped guide the radiation technologists while setting up the machine. The risks of not hitting the same spot with each radiation session were too great to not use a permanent system to mark his body. Those tattoos will also serve as markers should Liam need radiation in the future. Essentially, they’ll know where not to radiate him in the future since you can’t radiate the same area.

The process every day was the same. We’d have to be at the hospital by 7 a.m. (Liam insisted on wearing his jammies to the hospital); go to the IV room on the 9th floor; wait; get hooked up to fluids; go down to the second floor; yell, sing or hum Old McDonald through the hallway with echoes while I explained every day why this particular hallway had echoes while the five other hallways on the way to the radiation area didn’t; wait sometimes more than an hour for a radiation technologist to summon Liam from the “tiny play room” complete with a play kitchen and miniature-sized radiation machine for simulation play; go to the radiation room; make sure it was his picture showing on the monitor positioned up high on one of the walls; hold Liam in my arms while the grips of anesthesia forced him to sleep; carefully place his limp body on the hard table; kiss my son good-bye; say a quick prayer; leave the room with 1-foot thick walls and door while a team of people hovered over him to prepare his body and the machine; meagerly walk back to the recovery room to wait; do e-mail while watching for him to be wheeled into the room in a small hospital bed with a monitor loudly but assuredly beeping his vital signs; inspect and fret over my baby while waiting for him to wake up; change him from jammies to clothing; hold him close to my chest the minute he woke up; put him in his stroller; figure out how to kill five hours until the second radiation session of the day while keeping him entertained; and then do it all over again. But here’s what amazed me. Liam loved the process. He would wake up around 6:15 a.m. each morning, come find me and announce he was ready to go to the hospital to have his picture taken. The radiation machine looked similar to a CT scan machine which also looked similar to a MIBG scan machine – “picture machines” Liam is all too familiar with by now. So for him, this was simply a different kind of picture…in a room with pictures of leaves on the ceiling. He liked it so much that after the second day, he marched to the room without needing me to hold his hand and instead held the string of lady bug pull toy that played “Old McDonald.” He passed five radiation rooms along the way – each with two or three attendants – and said hi to each person he saw and announced he was going to get his picture taken. When he walked into “his room” which was the last one in the row, he looked for the anesthesiologist, announced that he was ready to “rock and roll”, positioned the lady bug pull toy next to the radiation table; stepped on the step stool usually used by people decades older; and then rock-climbed up the side of the table to reach the top. He would ask the anesthesiologist, there was a different one every day, if he could help and then would push the white-colored anesthesia into his tubie. I would hold him while he pushed the end of the syringe under the watchful eye of the anesthesiologist. It took about 10 seconds for it to take effect. And then he was out and I was being silently but definitely encouraged to leave the room. The second he was asleep, loud beeps and other strange noises would sound as the machine and Liam were prepared for their rendezvous. The tone of voices in the room immediately shifted from friendly to business like. And as much as I wanted to stay and watch, I would walk back to the recovery room to get in as many e-mails as possible before Liam returned. When he woke up in the recovery room, he never asked what happened and never seemed surprised that he had fallen asleep or been moved to another location. He just wanted to be held and rest his head on my shoulder. And when he announced he was ready, I was allowed to put him in his stroller where he would flip over, tuck his knees up into his chest with his butt up in the air, and fall asleep.

Between sessions he couldn’t eat and could only drink clear liquids up to two hours before the second session. Liam learned the meaning of clear during radiation. Every day he valiantly tried to convince me that milk, his beverage of choice, was clear. And when he gave up on trying to convince me that milk was clear, he shifted his focus to ice cream. By the third day he would point out clear drinks and then work on getting me to buy every clear drink. Even though he couldn’t eat, the one place he wanted to spend time every day was the cafeteria. He would stand at the end of the railing normally reserved for holding trays while I bear-hugged him from the waist down to keep his shaky anesthesia legs firm, and intently watch the short-order cooks making eggs and pancakes. He wanted to know every step of the process for making eggs sunny side up, over easy, scrambled, and fried. He didn’t want to eat anything – he knew he couldn’t – he just wanted to watch and learn. One day during the week was Employee Appreciation Day and to note it a special smoothie station was set up. Liam was completely fascinated watching all the different combinations of smoothies being prepared. By the third day, Liam was greeted by cafeteria employees and his dream of watching popcorn being made in the large popcorn machine, something he has wanted to see since his first week at Sloan, was fulfilled. He was given a tall chair on wheels as a new perch to watch the workings of the early morning shift in the cafeteria. He would position his hands on the arm rests, tap his fingers, and survey the orchestration of the breakfast operation. He was in his element. We would walk around the cafeteria, he would pick out foods he wanted to eat, we’d collect them all in a box, and then carry them around the rest of the day until he could finally eat. He never complained about not being able to eat. He would just look at his food and change his mind every five to 10 minutes about what he would eat first.

The other four hours we spent playing in the sandbox of Sutton Place Park along with other children, watching boats go up and down the East River, and trying to discourage him from pulling flowers from the Trump apartment building flower bed. It was a triumph and bitter sweet to have Liam playing in a sandbox along children his age. He always wears a hat – he has always been a big hat lover – so no one knew he was a cancer patient between radiation sessions. But to be so close to other seemingly healthy children and their parents or caregivers was difficult. I reveled in the fact that Liam was there. I regretted the fact that our lives have forever been changed. I don’t like cancer. I want it to go far, far, away but the reality is it will never be further away than a three-month workup for a long time.

One morning we were greeted with torrential rain. After trying for more than 20 minutes to find a cab, a car service car stopped and asked where we were going. I told the driver. He told us to get in the car. I took the rain shield off Liam stroller as quickly as possible to keep him out of the rain, held him at arm’s length so he wouldn’t touch my dripping-wet jacket; he got a little wet and was quite unhappy, and off the car took for Sloan. And then the questions started. “Is it genetic?” “Did you suspect?” “Were there symptoms?” “How is he doing?” “What do you mean it isn’t genetic – you mean my son could get it?” “How would I know?” “Is he in pain?” Liam was fascinated with the dual DVD players in the car. I tried to answer the driver’s questions, but weighed what I was saying against the fact that Liam was with me and awake. I tried to be as informative but as vague as possible. When we arrived at the hospital, the driver pulled up onto the curb under the awning of the hospital so that we wouldn’t get wet. He scurried around the car to help us out and told us to call him any time. It turns out that he lives three blocks away from our, as Liam calls it, city home.

After the second radiation session, Liam would ravenously eat his selection of foods from the cafeteria. He couldn’t eat fast enough. And even through a drug haze and slurred speech he would tell me how good the food was. It’s now over and we can check add another check to the list of treatments completed. Up next? A week of 3F8 beginning Monday, July 23rd.