Friday, September 28, 2007
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
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
- 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.”
- 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.
- 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.
- 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
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......
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
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.