Monday, September 7, 2009
The Dynamic Duo at The Hayden Planetarium the Day before Liam's Surgery
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"The work goes on, the cause endures, the hope still lives, and the dream shall never die."
- Senator Edward M. Kennedy
A few weeks ago Liam and I were in the car returning home after finishing the fifth and final day of the first round of low dose chemo. It was 10 days after his long and complicated 8-hour surgery. It was five days since he had been released from the hospital. We were still in that “giddy to be out of the hospital” mode reveling in how beautiful the sky is and how great it is to feel a breeze. We entered the Holland Tunnel which, per usual, was heavy with traffic. To enter the Tunnel there are a series of merges where cars alternate moving forward as many lanes merge into two narrow lanes to funnel traffic under the Hudson River. A few lanes away on the right I could see a black, shiny hearse approaching the Tunnel. I avoid hearses at all costs and never want to be near them. My heart started to beat a little faster as I tried to calculate where I was in relationship to the hearse to hope that we wouldn’t enter at the same time. Entering the Tunnel, I was just slightly ahead of the hearse and tried to do everything I could to avoid looking at it in my side mirror. If I don’t see it, it’s not there. Then all of the sudden my lane stood still while with the hearse kept moving. Very soon the shiny hearse was one car ahead of me. It was right there. I couldn’t avoid seeing it. The walls of the Tunnel narrowed as I felt the presence of the hearse. I kept trying to get the traffic in my lane to move faster by driving as close as I possibly could to the car in front of me. I willed the traffic to move faster. I prayed for the traffic to move faster in my lane. My fingers tightened around the steering wheel and my hands began to sweat as Liam and I discussed how rocket ships go into space, how glass is made, why dogs slobber and other pressing curiosities. I had to get past the hearse. I had to beat it out of the Tunnel. I couldn’t let it win. Back and forth we traded positions. Liam and I kept chatting about all things Liam while he sang along to Jack Johnson who he calls “George the Monkey” singer. “Upside Down….We’ll find the things that can’t be found…we’ll share our love with everyone….and there’s no time to waste….and this world keeps spinning round and round and upside down…we’ll be together till the end of time…” The race with the hearse silently continued. It was a race I was determined to win. I had to win. And then the traffic in my lane stopped. All I could see were red lights ahead. The hearse cruised past me. I was crushed. It was way up ahead and looked unreachable. And then traffic started to move in my lane. I could see the hearse way up ahead. My lane inched forward painfully slow. My heart felt like it was going to pound through my ribs. I had to win. I could not follow the hearse out of the tunnel. I had to win. Very slowly I pulled in line with the hearse. It was right next to me. And then ever so slowly I passed the hearse. I was a half a car ahead and then one car ahead and then two. But I knew at any moment things could change and it could be ahead of me again. I knew the end of the Tunnel was coming soon but there was still enough room and time for the hearse to pass me. And then all of the sudden traffic in my lane shot ahead. I considered changing lanes so that I could guarantee a win. The ticket would be worth it, although explaining to an officer why I switched lanes could be challenging and then explaining to Liam would be worse. I stayed in my lane repeating “come on…come on…come on…drive…drive….drive.” I couldn’t think about anything else as I maintained a steady banter with Liam the Inquisitive. I had to win. I would win. I had to win. I could see sunlight shining ahead. I knew the exit was just up ahead. I could see the top of the hearse several cars back in my side mirror. The road bent a little and a flood of sunlight came into the tunnel. It was so close. As we exited the tunnel the hearse was three cars behind. We made it! I wanted to throw my arms up in the air and do a dance like an NFL football player in the end zone after completing a tricky touchdown pass. But instead I told Liam I loved him and thought we should stop at a farm on the way home where we could cut our own flowers to which he replied, “that’s a great idea Mommy. I’ve always wanted to do that.”
My apologies for the “radio silence” and any fears our lack of communication has caused. We’re OK. A bit worn, but OK. We’ve been in the tunnel and focused. When we first got the news, I had to quickly regain my footing and brace myself for being plunged back into the cancer groove. It wasn't easy and I'm very grateful there were others to help support me from nurse practioners who let me cry on their shoulders to a deluge of supportive messages. For the past 10 weeks Liam and I have become one again. We read each other. Too well. He knows if something is wrong. He asks more complex questions although he still hasn’t asked the big one – “Is something wrong with me?” We assumed the roles we know too well. I know how to crouch in just the right position to cradle his head in the crook of my neck while holding a throw up bucket while he’s on the toilet exploding with diarrhea. He knows how to hold his throw up long enough for me to grab a throw up bucket which is always within an arm’s reach. I know how to pin him to my chest so that a nurse can access his port while he’s screaming at the top of his lungs and thrashing with all his might from fear and anxiety. He has retrained himself to do his hospital time without complaining. He didn’t ask why but I did. "Dear God, why can’t Liam have just a normal summer filled with no obligations except having fun?" Why does his summer camp have to be the hospital? Liam is like a cat – he always lands on his feet – so why is this happening? He’s the child who on his very first try of looking in a field of clover for a lucky four–leaf clover found one. He reached down and pulled out a lucky clover as if it was no big deal and couldn't understand why we were all astonished. This is the child who had no delays and no complications. This is the child who his father, sister and I love more than anything. Was it something I did? Was it something I didn’t do? Why?
In 10 weeks Liam has been through the proverbial ringer…but you’d never know if you talked with him. His daddy and I notice subtle changes in his personality – he’s a bit more cautious around certain things and can easily work himself up into a nervous energy he didn’t have before - but for the most part he’s Liam. To him it has been a normal summer. After all, this is the third consecutive summer he has spent his summer vacation in a hospital. He has had scans including a very long full-body MRI which he did without anesthesia; he learned how to spell blood having seen it so many times around the hospital being wheeled down hallways to and from appointments; undergone two surgeries – one to place a port on the Monday after we got the news (he started chemo on Tuesday) and a second “big” operation with the talented Dr. LaQuaglia who scoured his body to extricate anything that looked like cancer; radiation directly to his body cavity while he was opened up during surgery using a special applicator that is a one-of-a-kind apparatus made of a combination of silicone and rubber to conform to the terrain of a patient’s body and developed by three doctors at Memorial Sloan-Kettering (let’s not even talk about how bizarre it is learning there is a team of 10 from radiation including three physicists who swoop into the operating room to receive a report from the surgeon on where he found cancer and map out a radiation plan on the spot); a round of really tough high-dose chemotherapy called ICE (when one cancer mom heard we were doing ICE she had to hold back the tears as she looked at me knowing how difficult the regiment is); a very grueling 16-day hospital stay post ICE while his bone marrow recovered enough to start producing blood cells and platelets which was marked with eight days of nonstop fevers every three and a half hours that at the onset caused his entire body to shake uncontrollably to the point that he would start violently coughing which would cause him to throw up even though he had no food in his tummy and have a bout of diarrhea – a process that would take an hour and a half to get under control which would give us another hour and a half respite until it started all over again; a move to a new apartment which Larry had to navigate without me and Liam since we were in the hospital; an emergency CT scan on July 4th which had to be postponed until July 5th because no radiologist would come in to read the scan on a holiday to see if he had fungal pneumonia which would explain the violent coughing (one doctor’s explanation about why a radiologist wouldn’t come in on a holiday was a dry, “no one cares about kids”); an ambulance ride to and from Cornell ICU – the first of which he was unconscious and on a ventilator for and the second he was awake and enjoyed; a four-night stay in Cornell ICU post-surgery (which could have been two but there were no beds available at Sloan-Kettering) which was highlighted with Liam pulling out the ventilator tube helping him breath and the NG tube draining his tummy on his own 12 hours after his surgery even though his arms were restrained – he was in a room with three patients, two nurses and a doctor and I was taking a 20 minute cap nap with my head on the foot of his bed and woke up when I heard him trying to talk to me - which caused a huge scary scene in the ICU of people rushing to his bedside with the expectation of reinserting the ventilator tube which I said no to since he obviously was feeling well enough to remove the tubes and no alarms went off indicating he wasn’t breathing well (“Mommy – I felt the tube and I didn’t like it so I just pulled it right out”); the placement while in his bed in ICU by Dr. LaQuaglia of a new chest tube to drain the fluid collecting on his lung that was causing it to collapse the day after surgery; two rounds of low-dose chemo which is a cake walk compared to high-dose chemo but still requires multiple trips to the hospital, fatigue and diarrhea; a radiation set up which included making a new mold of his body and adding new tattoos on his chest (the last time he was tattooed was under anesthesia…this time it was with numbing cream and yes, they use tattoo ink and yes, it is permanent); 10 days of radiation twice/day that spanned three weeks since it started on a Friday; burns to the inside of his esophagus from radiation which makes swallowing extremely painful only lessened with nonstop narcotics; a two-night hospital stay after a fever with low blood counts; multiple transfusions including a platelet transfusion that caused his throat to become restricted and his body to break out in angry hives followed by an emergency dose of another medicine in a little plastic IV bag to reverse the effects to make sure he didn’t stop breathing; and as of this post the nervous energy of waiting for scan results since getting a CT on Friday afternoon and MIBG on Saturday during Labor Day weekend. (Yes, they scan on Saturdays.) There are so many medical checkpoints that occur throughout a day to maintain a child’s health when they’re in the hospital. If you think about it, it’s almost too much to comprehend how any can live. We humans are a pretty darn complicated. We have been through so much – moments when time was measured moment to moment, blood gas level to blood gas level, CBC to CBC. And as much as is happening on the medical front, there are just as many stories to relay about Liam being a boy full of wonderment, inspiration and graciousness. He never once has lost the essence of who he is – a sweet, inquisitive little boy who loves with endless reserve and with no reservations. When we were discharged from the hospital after his 16-day stay where he missed the July 4th holiday, his first request was to go to a toy store to get a present for Ella…and maybe one for him too. He has lost weight, lost his hair, regained the weight, lost it again, and is now working on regaining the weight and his hair which has sprouted a peach fuzz all over his precious head. He loved pulling out his “magic hair” to give to people – something that newcomers to magic hair received with a bit of shock, surprise and astonishment. He discovered the magic of Star Wars and Magic School Bus. Star Wars quenches his thirst for space and discovery while Magic School Bus gives his science-oriented mind answers to endless questions. We have examined work sites in the hospital watching workers as they repair, install, and inspect. He is now a doctor in training with his own white doctor coat that is adorned with a real stethoscope that is blue (he picked the color), a small orange light for checking patients’ pupil reactions, a notebook and pen in the pocket because that’s what his doctor has in his pocket, a small quacking duck to make his patients laugh, a bottle of Purell, and a real hospital photo ID that bears his signature and is attached to the breast pocket of his coat with a retractable string like all doctors and nurses. (It was one of those classic Liam moments – he confidently strode into the hospital security office wearing his white doctor coat and respectfully but determinedly announced he needed a photo id. And he got one.) He rotates wearing the doctor coat with his other hospital outfits – Mr. Incredible and Superman, appropriately. We’ve tried to live as much in the carpe diem spirit as possible and do…not talk about doing. We’ve been to the Museum of Natural History and Hayden Planetarium, visited the Children’s Museum, run through water fountains; ridden the Roosevelt Island Tram, walked through Central Park to smell the wonderful smell of grass and trees; strolled through Times Square to look for the man with the albino Python and marvel at all the lights; gone to the movies which is a new activity; and seen The Lion King on Broadway which we’re still reliving and singing the songs to. Ella has been with us on many of our adventures and many of our hospital days which has been really nice. She adds a certain element of comic relief and loves being with us as much as we love having her around.
We have greeted newcomers to the cancer world including the mom I met at 5 a.m. one day on her first full day at Memorial Sloan-Kettering after he son was diagnosed with cancer during a family vacation on a cruise ship off the coast of Greece. We have shared scary and sad news with friends. We have seen other children lose their battles. We said good bye to baby Pierce and his wonderful family as they returned to Oklahoma to shower their precious boy love and comfort. And we have seen other friends looking great. We have never lost faith. We have no reason to. We have never lost hope. We have no reason to. We have, though, worked very hard at keeping Liam and Ella happy and imprinting every laugh, smile, “I love you,” and snuggle on our souls. We have been in our tunnel and completely focused. It has not been easy but who said being a parent was going to be easy? Liam is our hero and Ella his adoring princess in waiting. Liam has made one change about his future plans. He has decided he wants to go to Princeton because it’s not too far from us and their school color is orange, his favorite color. He talks about going to college quite frequently. He can’t wait to learn about science, lightening and electricity stuff. Oh, and be a space guy fixing satellites.
Thank you to everyone who has prayed for us, sent good wishes, musical cards, special treats, visited us at the hospital, visited us at home, brought meals, and been there for us. Your support means the world to us and helps keep us going. Your support allows us to be in The Tunnel focusing on Liam. And without your support this journey would be much, much harder. We are humbled by the outpouring of support we continue to receive and are so incredibly appreciative.