Enter your email address to receive updates on Liam's progress

Enter your Email

Preview | Powered by FeedBlitz

Wednesday, September 16, 2009

My name is Liam. “L” - “I” - “A” - “M”.

Today was day two of round three of low dose chemo. It’s not so bad…compared to what he has been through. He has a full head of baby soft hair…except for the oval-shaped spot on the back of his head courtesy of a pressure wound while on the bloody bi-pap machine at Cornell. I have to restrain myself from marching him over to Cornell to say – “Hello, Remember me? I’m the mom who you thought was crazy when I told you his head had a HUGE goose egg growing out of the back of it from the tight straps around his fluid swollen body and you totally dismissed me? Well, look at his head now! I told you something was wrong!” But that would only upset Liam and I’ve been told his hair will eventually grow. I suppose it’s one of those concerns that’s a bit down the worry list but I’d be lying if I said it doesn’t irk me. He has regained a lot of his energy, so much so that he outpaces Ella when we’re out on scooters but he’s still suffering from a raw esophagus from radiation that makes eating and drinking impossible without narcotics.

Daddy was out of town this past weekend so we spent the weekend out and about town on scooters. Ella’s is pink and she wears a princess helmet. Liam’s is orange and he wears a Spiderman helmet. Mommy’s has no color but has a board wide enough to accommodate Liam and Ella when they get tired of scootering. Yes, all three of us can squeeze onto my scooter, albeit very carefully. We were outside for hours on our scooters on Saturday exploring the Hudson River Parkway…in the pouring rain…and loving every minute. We came in for a break and then it was Liam who announced he wanted to do more scootering….so out we went for a night time jaunt from 44th Street and 10th Avenue to 58th Street and 8th Avenue. Two of the blocks were on a fairly steep incline which Liam went up without any struggle while Ella had to walk her scooter up the hill. Liam had one face plant – head over the top of his scooter handle – but not while going very fast. He scraped his nose, but not badly, but enough to scare him and cause a scab. As I was crouched on the sidewalk comforting him, I was in a strange way happy to hear him crying over something so normal as a scraped nose instead of a personal violation courtesy of cancer treatment. On Sunday we scootered for hours along the Hudson River on a picture perfect gorgeous September day. We had an amazing day laughing, loving and being together. We explored piers, checked out every sight along the way from a helicopter launch pad to a restored fire boat built in 1931, and watched a cruise ship makes its way along the river on the way to the Atlantic. In our pack, Liam leads, Ella follows and I stay close behind reminding Ella to keep her eyes forward and looking for bumps. Liam points out bumps to Ella and yells warnings to her. It would be Ella who would get tired and insist on catching a ride on Mom’s scooter, not the cancer patient who has been through more than I care to recount and who has every reason to be the one who tires first. He reminds me of Lance Armstrong….he does what everyone else thinks is impossible. Every time they dynamic duo went down an incline of any sort, there would be hoots and hollers and squeals of laughter. Liam has absolutely no fear of speed…and there’s a transfer of fear to me as I watch and pray he’ll be OK.

He took the hospital by storm…on his scooter. On Monday he rode into the hospital on his scooter and took great pride in showing off his new mode of transportation. He couldn’t wait to show Dr. Kushner how fast he could go on his scooter, a feat on many fronts. Ella was also along for the trip, as our new regular hospital team member. When it came time to access his port, he looked at me through tears and asked if he’d still be able to ride his scooter and I assured him yes. He also asked when we would be done with all this medicine stuff, to which I replied as soon as we possibly can be. And sure enough, after the insertion of a needle into his port which has a 7” long tube attached that snakes to his waist and before he would allow a shirt to be put over his head because of fear of disturbing the tubie, he tested riding his scooter.

Today he felt some of the side effects associated with one of the chemo drugs. When we got home, he had to take the remaining two of three chemo pills. As soon as the pills were down, he looked at me and said, “What if I have to throw up?!” I begged him to calm down and relax and not throw up but within 20 seconds he was running to the bathroom with me following and exploding with vomit that consisted of curdled milk and bunny crackers. It was so powerful it flew out his nose. He wretched and wretched and I saw the chemo pills come out with the powerful waves of nausea. And then, knowing that if he didn’t take those two pills we’d have to go back to the hospital which would mean he wouldn’t get to visit with his special friend Taber who he adores, I reached into the toilet and the sifted through the vomit until I retrieve the two pills, rushed them over to the sink, rinsed them off and then started blowing on them to stop the process of the gelatin capsule from disintegrating which would make the pill useless. It was a knee-jerk reaction. I don’t normally forage through vomit, but I would do anything to let Liam have a play date he was so looking forward to. After we cleaned him up and rinsed out his mouth, I looked at him and said, “Buddy…here’s the deal…you either take these two pills (which were standing upright stuck to my fingers but still intact) or we have to go back to the hospital to get two more.” He looked at me, asked if they were still OK to take, took my word that they were, opened his mouth and pulled the pills off my fingers and swallowed them. And once again I say that he is my hero. My poor guy who is still can barely eat or drink because of radiation burns to his esophagus did what needed to be done in order to move on.

Today there were special visitors at the Pediatric Day Hospital. Three Yankees players came to say hi. Now, Liam doesn’t know who the Yankees are nor has he ever watched a baseball game. He knows the sport from having learned about it firsthand. He and Ella stood at the front of the crowd looking at the larger than life players trying to understand what the big deal was. After the presentation the players signed balls for all the patients. Liam picked up a ball, walked over to Andy Pettitte, placed the ball on Andy’s knee, borrowed Andy’s pen, very slowly and deliberately wrote his name on the ball and handed it to him. Andy looked at the ball with complete surprise and wasn’t quite sure what to do. Liam then said he had to give the ball to his mom and walked away. When Liam showed me the ball with his signature, I explained that usually people want the baseball player to sign the ball, not just borrow the baseball player’s knee. He wanted to know why. So I explained he’s a very famous baseball player and people like to have baseball players sign balls as a special gift. He was completely perplexed by the concept of wanting someone else’s autograph, but decided to go along with the idea. So off he went…back to Andy Pettitte to ask him to also sign his ball….which Andy graciously did. And after he came back to show me the ball with two signatures….Liam went back over to Andy one more time to give him a big kiss on the cheek which Andy welcomed from the little boy who didn’t exactly follow the flow of the way such situations normally unfold. And as Andy and the Yankees crew were leaving, yelled out…”Bye! Thanks for coming!”

Ah Liam…you are one of a kind.

Thursday, September 10, 2009

Clean Scans?

Clean Scans?

Yes….but. Liam had two scans – a CT on Friday and MIBG on Saturday. The CT was clean with a qualifier and the MIBG is negative. There’s a spot between his kidney and liver in the site of his original tumor that was on his last scan – the one done during our long inpatient odyssey in July to search for fungal pneumonia. This was the CT that showed his primary tumor had shrunk by 50 percent after one round of ICE, the super-tough chemo regiment that brought tears to a mother’s eyes when she heard we were doing it. The spot is still there but is MIBG negative and it’s something that would be big enough to be MIBG positive. It’s also something that Dr. LaQuaglia, Liam’s surgeon who also qualifies as surrogate grandfather, thinks is post-operative change. He studied the images and compared them to his surgical report and said it was an area he was definitely “in” searching for signs of neuroblastoma during Liam’s surgery. It’s an area that has been through three surgeries. It’s an area that has seen a lot. He, apparently, feels quite confident it’s not neuroblastoma. Liam’s MIBG scan is clean, the gold-standard for neuroblastoma, which is a huge relief. Our sweet guy whose new passion is dressing up as a SWAT team member is one who is MIBG “avid” which is a good thing because it’s a reliable test. (In case you’re wondering, his first relapse which showed on a CT but not on an MIBG was so small that it wasn’t large enough to show up on an MIBG scan. This thing is bigger and would definitely light up on an MIBG.) But because neuroblastoma is a resilient and cunning beast…we can’t take any chances. There’s no opportunity in this game to say, “We should have.” We are moving forward with another round of low-dose chemo beginning Monday which means Liam will be going to school while on low-dose chemo. (I wonder how many preschoolers can make that claim?) In four weeks we will rescan and when those scans show no changes because I know they will, we will move forward with the NK Cell trial. NK, for those not familiar, stands for Natural Killer. Here’s where we get into wacky, weird science. I don’t know enough about natural killers to be able to explain it….but I know that my blood and Larry’s blood will be tested to see which one of us is a “mismatch” to Liam’s blood and can give him an “ingredient” that’s missing that would then make 3F8 antibodies more effective. Liam will be the second child to participate in the NK Cell Trial. The first child to participate in the NK Cell trial is a sweet little girl from California who had persistent neuroblastoma that just wouldn’t go away…no matter what was thrown at it. I remember talking with her very worried looking mom about her daughter becoming a part of a very new trial that sounded a bit like Star Trek science. I remember seeing her look even more worried leaving the IV room after having her blood drawn and looking a bit discombobulated having to be the one receiving a poke instead of watching her daughter. I remember being scared for her and wanting to run up to her and give her a hug, but was tending to Liam who needed me. I remember seeing her a few weeks later on the day they were to receive the results of her daughter’s scans post NK Cell. A lot was weighing on those scans. The weight of the world. She and her husband looked so nervous but we were all trying to act like it was just a normal day…in a pediatric cancer ward. I saw her, her husband and children in the late morning. I can’t remember why Liam and I were at the hospital that day. We’ve had so many trips it’s hard to keep the details of each straight. I remember wishing and hoping so, so, so hard for them to receive good results. I didn’t see them again that day. But that afternoon there was an e-mail about the nothing less than miracoulous scan results following NK Cell. Tears flowed freely down my face as I read the account. I was so moved I forwarded her update to a few friends. Tears flow freely down my face now as I remember reading her update. Her scans were completely clean. Completely and unequivocally clean…because of a trial that was funded in large part with private donations. Think a cookie can’t make a difference? Think again. Every bit counts. I recently heard Katie Couric being interviewed about her philanthropic work related to cancer research funding. During the interview she explained to Larry King how important the private sector is advancing cancer research and used the statistic that eight of our 10 clinical trials are funded with private funds, not government funds. Eight out of 10. Eight out of 10? I was stunned to hear the number and stood mesmerized in front of the TV taking notes. Katie’s platform was that if we are going to make a difference in this war against cancer, we all need to work together. I firmly believe that it is not science that is holding us back, it’s funding. What if there wasn’t funding for this trial? How long did it take to fund? And reading the update from the mother who saw her daughter’s disease disappear because of a trial that weeks ago hadn’t been available served as reaffirmation to keep doing everything possible to impact change. No one else is going to take care of this – it’s up to us – you, me and everyone we know. There are ideas, hypothesis and theories just waiting to be developed that have no funding. And that, to me, is the greatest injustice. What would you do if you knew you could be part of saving someone’s life? By raising money for research which includes funding trials, that’s exactly what you’re doing, saving lives. And wouldn’t that be an amazing feeling knowing you were part of something that had the ultimate impact? We’re into the month of September which is Pediatric Cancer Awareness Month but in every store I visit, magazine I read, commercial I see….I am bombarded with a sea of pink. Now, don’t get me wrong, Susan G. Komen and her sister are my heroes. Susan’s sister was so outraged at the loss of her sister she decided to do something about it and changed the way we as a society think about breast cancer. I am so grateful for the work she has done and I hope I never have to be a beneficiary of the advancements she and legions of others have made on breast cancer treatment. But couldn’t there be just one commercial….one display in a retail store….one magazine story about pediatric cancer to note Pediatric Cancer Awareness Month? Just one? Being the number one disease killer of children in the U.S. would seem to make it worthy of highlighting, right? And if you’re not sure how funding can help…use the sweet girl from California as the poster child as inspiration. Clinical trials save lives. And if you cut funding to clinical trials, which is what has been happening, you are essentially telling a family that there is no money to save their child. If polio could be eradicated through a campaign calling for the collection of dimes, why can’t pediatric cancer? Shoot, I’d settle for all trials waiting to be funding to be funded.

Liam’s good, relatively speaking. He’s dealing with radiation burns to the inside of his esophagus that cause him great discomfort only relieved with narcotics. Eating and drinking is only done with the help of a pain killer. This morning he set up a weather station on the roof and is bubbling over with the excitement at being able to forecast weather. He can’t wait for school to start. He was watching You Tube tonight about how smoking damages lungs and explaining to Ella what was happening, “Ella – those are arteries…see them? They’re bigger than veins and carry more blood. And those there are red blood cells – they look like donuts. And the big ones are platelets.” And then he moved from discussion about platelets to his new passion…a Nintendo game thing that I totally don’t understand but that he has fallen in love with. It’s one of the ways I know he really is a little boy. I love him so much. I love watching him protect and take care of his sister whether it’s putting toothpaste on her toothbrush or reminding her that school is starting soon and she’s going to need to get up earlier. He wants to be the older brother blazing the trail for his sister. And Liam, we’re doing everything we can to help you keep blazing trails because we know you have a lot to do.

NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. All it takes is a few clicks to support pediatric cancer research. Please. See the Facebook page and/or website for details.

Monday, September 7, 2009

The Dynamic Duo at The Hayden Planetarium the Day before Liam's Surgery

NOTE: Please support pediatric cancer research by visiting www.philosophy.com to purchase a bottle of Oatmeal Raisin Shower Gel. Until October 15th, 100% of the profit of bottles of the cookie-scented shower gel is being donated to Cookies for Kids’ Cancer (www.cookiesforkidscancer.org). In addition, Facebook fans can go to Philosophy’s page and send virtual cookies to friends every Saturday in September and Philosophy will donate $1 to Cookies for Kids’ Cancer for each “cookie” sent. See the Facebook page and/or website for details.

"The work goes on, the cause endures, the hope still lives, and the dream shall never die."

- Senator Edward M. Kennedy

The Tunnel.

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.