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Tuesday, September 30, 2008

I’ll be loving you always.

Note: I’ve been trying to finish this post for too long, but the super-warp speed that is our norm cranked up a few notches with the start of school for BOTH of our sweet babies, an unexpected and hastily scheduling of scans and bone marrow tests, radiation simulation, radiation practicing and then the beginning of 11 days of twice daily radiation sessions before and after school. Our apologies for keeping people hanging. We are always trying to keep the balance of our responsibilities to Liam and Ella in check with hospital time, work commitments and philanthropic activities. There’s never enough time in a day and days are never long enough. But even with days that seem to be moving at the speed of light, we very consciously try to savor each and every smile, discovery and ordinary moment like enjoying a bowl of ice cream or using flash lights to look for toads and crickets in the dark.

September 10th

We’re home! We’re home! Liam’s white blood counts shot up from 2.2 at 5 a.m. on Tuesday morning, to 5.6 when we drew his blood for a CBC at 8:20 p.m. that evening. Adrienne, Liam’s incredibly sweet and competent evening nurse, was so excited for us she tracked us down in the playroom to let us know about the jump. I wasn’t surprised. I had a good feeling it was on the way up. We knew that with a white blood cell count that high his absolute neutrophil count (ANC) would probably reach the golden .5 mark, our ticket out of the hospital. We waited. Liam talked about how much he wanted to go home. He kept telling me, “Duck Puppy and Monkey Puppy really want to go home. They hate being here.” Yes, dear Liam, I hear you. You hate being here. I know. I know. I’m trying to make this as bearable as possible, but I know it’s not where you want to be spending time…precious time.

It was the evening before the first day of school. Liam desperately missed school and talked about his friends and his beloved teachers almost every day. One of the activities that got us through the slow tick of a hospital clock was looking at pictures of his school year and classmates. He would tell a story about each and every person but they all ended the same way, “I love him” or “I love her.” He adores school and I wonder if one of the reasons is because it’s a completely different world than the hospital world and it’s a “safe place” for him without any “pillows” (aka pills), shots, or finger sticks. I also, though, think it has to do with the fact that it’s consistent. In the hospital world, a child Liam plays with one day will probably not be there the next because of different treatment schedules. There are no solid relationships with other children that can be formed which can be challenging for a child who is at the stage of learning some of the key developmental milestones. He craves consistency and that is something he found at school. On the day Dr. Kushner presented the roadmap of what Liam’s treatment would entail after his July 18th surgery, we asked him if Liam would make his first day of school. He said it was doubtful but that he’d probably make it within the first few weeks. I made up my mind that day that we were going to do everything possible to get him there on “opening day.”

Adrienne called the lab to speak with a tech who was manually counting the number of absolute neutrophils to let her know we were waiting. Yes, in this world of automation there are still some things done manually…like counting precious neutrophils…one by one. We waited. Finally, finally…after eight long days in the hospital we got the news we had been waiting so many hours and days to hear….his ANC was .8 and we could go home! (Cue the fireworks and pop the champagne corks!) As we were going about gathering things, we saw Linda who is one of the nurse practitioners on the neuroblastoma team who works over on the Day Hospital side. It was late…about 9:30…and Linda had been at the hospital since the morning. Even though she had put in a very full day, it wasn’t surprising to see her late into the evening. Everyone on the neuroblastoma team works insane hours and of course Linda would be there after 9 p.m. checking on a patient on the sleep over side of the 9th floor. She asked if we were doing “the balls” when we got home. Me: “The what?” Linda: “The balls to give him Vancomycin at home.” Me: “The balls? No one mentioned them to me.” Linda: “They come from home health care. Do you have home health care set up yet? If you’re going home, you have to have them set up so they deliver the Vancomycin to your home.” Me: “Home health care – I’ve never heard of it and don’t know anything about it.” OK – Cue the scratching of a needle across a record and recork the champagne bottles…clearly there was a communication breakdown. Because of his positive blood culture for bacillus, he needed to stay on a 14-day course of IV antibiotics that are administered every six hours over the course of an hour. Arrangements need to be made well in advance of a patient’s discharge to have the medication and all of the paraphernalia that goes along with it timed to your arrival home. Home health care includes a visit from a nurse who instructs how to deliver the medicine, flush the line that goes directly into Liam’s heart, the proper way to Heparin lock his port, and other instructions on what to and not to do.

Both Liam and I were crestfallen. Liam kept asking over and over, “if I have lots of white blood cells, why can’t we go home?” After all that work, he was going to miss the first day of school.

We spent one last night in the noisy room. After seven nights, we developed a forced rhythm of respect with our neighbors, although it was a treaty that could be broken at any time.

Wednesday morning and the first day of school, but also the day we were scheduled to meet with the radiation oncologist for an exam and needed to get the home health care arrangements set. I didn’t tell Liam it was the first day of school. I didn’t want to disappoint him. The radiation oncologist’s fellow, Leslie, came to examine Liam. The exam consisted of identifying the tattoos on his stomach and sides, the ones Liam thinks are freckles, and then going over the game plan of what was going to happen which was a conversation reserved for the hallway. We talked while Liam patiently bided the time by watching Bob the Builder. The radiation oncologist, who I last saw at a pediatric cancer fundraising event held at FAO Schwarz in March, joined the meeting. The discussion included talk about how radiation permanently damages kidney tissue and that this was a second pass of radiation for Liam’s already damaged right kidney. Kidneys can function with only 1/3 of their capacity so the thought is that the kidney will still be functional. But, I was reminded for the umpteenth time that people can live with only one kidney. (I know, I know…but it’s not what I wanted for my baby boy at such a young age.) Liver tissue will be hit by radiation beams because a small portion of the liver is in the radiation field. Luckily liver cells regenerate. (OK – I can handle this.) But the most important information learned during the meeting was that the 1 cm x 1 cm spot of 95 percent “junk” with a very few cancer cells in the center was NOT in the original field of radiation. This was huge news and not what we had been told back in July. I asked her to look at his chart and be sure, absolutely sure. She did and she was. This was HUGE news and much, much better than finding out the unwelcome visitor was in the original field of radiation…which would indicate his original dance with radiation didn’t work. We ended our conversation and finally…finally…after eight very long days and nights in the hospital we were free to go home…after his noon dose of Vancomycin

When we finally left the hospital 1:30 p.m., Liam and I stepped out into the fresh air on a perfect September day and reveled in the feel of air swirling around our faces and the warmth of sun on our cheeks. There is nothing quite like being outside. It’s nothing short of glorious. You realize how air outside smells like air…not air that is cleansed and purified. There’s also nothing quite like leaving the world of beeping pumps, small rooms and the smell of fear behind. The specter of death is way too close for comfort on the 9th floor.

In the cab on the way home, Liam leaned his head back on the seat, asked me to open the window, closed his eyes and felt the wind on his face. He was very quiet and I could tell just grateful to be out and on his way home. We were home for less than two hours before having to go back to the hospital for his next dose of antibiotics since home health care wasn’t arriving until 9 p.m. All of the sudden I started realizing that administering antibiotics for an hour every six hours might seem like no big deal, but it was going to be a huge time drain. While we were at the hospital receiving the 6 p.m. dose, we ran into one of his doctors who asked if scans had been scheduled. They hadn’t but I had a feeling they would be shortly.

And now is when the schedule gets really crazy.

Wednesday, September 10th – Monday, September 15th
Antibiotics every six hours at 6 a.m., 12 p.m., 6 p.m. and 12 a.m. Each dose was a two+ hour process of taking the ball-shaped dose of antibiotics that was pressurized to push the antibiotics in without a pump out of the refrigerator an hour before to get to room temperature; hooking up the antibiotics to Liam’s port at the appointed hour which was always a nerve-wracking experience knowing the importance of cleanliness and preventing air bubbles from entering his central line which could cause irreparable damage to him (I’m not even going to mention what could potentially happen but it’s not good); disconnecting him after all the antibiotics were pushed into his line which sometimes took an hour and others an hour and a half if he rolls over on the line while sleeping; cleaning the port and then flushing with saline; and cleaning the port and “locking” with Heparin to keep the port open and ready to access six hours later. During the midnight and 6 a.m. doses, I got to the point I could do it so stealth-like that he would rarely wake up. During the noon and 6 p.m. doses, Ella would often serve as the antibiotic ball carrier so that Liam could do whatever he wanted to do without being restrained. At one point Liam discovered his scooter was an excellent transporter of not only him but also the antibiotic ball, a discovery that we quickly curtailed with the fear of him falling and ripping the line out of his chest.

Thursday, September 11th
Liam’s first day of school. He missed the true first day but was there on the second. And as we walked in with all the other preschoolers buzzing with excitement, I was nervous for him (would anyone notice his lack of hair and if so, would they say anything?) and stuck in the significance of what a triumph it was for us to even be there. I tried to shed the hospital skin I’ve been wearing since July 18th and put on the mom of a preschooler skin. It’s never an easy transition and we’re still in the midst of intense treatment so I’m not sure I really can do it. I can’t tell if this year is easier because I’ve already been through the awkwardness of the first day and days of school and know the routine, or harder because Liam’s bald head make him stand out and turns heads. (So much for blending into the crowd.) And of course you want to tell people the hurdles that have been overcome just to do something as simple as say “Good Morning” to teachers and classmates, but it’s not information I would volunteer unless asked and then if asked have to quickly asses how much information I should give someone without overloading their senses.

From Liam’s perspective, it was a glorious day to see his friends from last year, his teachers and be back in his “safe zone.” I was worried his friends wouldn’t recognize a bald-headed Liam. No one had any trouble identifying him which might speak to the bubble of enthusiasm that surrounds him.

Friday, September 12th
Ella’s first day of preschool. Ella and Liam went together and Liam was very excited and protective of his little sister. Ella was a model student, as we all knew she would be.

Monday, September 15th
The 6 a.m. antibiotic dose was the last one, a very good thing. It was exhausting. After school was a trip to the hospital for radiation simulation. Liam underwent X-rays and a CT scan (I believe it was his ninth) to give to a physicist who does whatever a physicist does in order to figure out how to point the very powerful radiation beams at a very small area nestled between his kidney and liver to zap any remaining sneaky bastard cancer cells that escaped two rounds of high-dose chemo. And then we had to make the mold that would help hold him in place during radiation where he has to be perfectly still. Two liquids are mixed, shaken to a look and consistency similar to pancake batter, poured into a giant plastic bag and then spread out on the glass table of the radiation machine so that the liquid is about 1/8” thick. Liam was asked to lie down on the plastic bag with his hands above his head, something he was reticent to do but finally did, and be still. Within minutes, the concoction warmed up and started growing all around him. And within 10 minutes, there was a mold of Liam’s small body from his waist to his head. He was fascinated but also a bit hesitant. I hadn’t done a good job finding out what was entailed with getting a mold of his body so I didn’t have time to prep him. He doesn’t like surprises. My bad. As a reward, we took the subway home which he loves.

Tuesday, September 16th
An e-mail arrived from Kristina in Dr. Kushner’s office with the schedule for his CT scan, bone marrow tests, MIBG injection and the nerve-wracking MIBG scan. All the tests were Friday and Saturday. This set of scans represents our new starting point and when the five year clock once again starts ticking. From here out we need to get to five years before we can breathe easy. Five years. 60 months. OK. Let’s go. Start ticking.

Thursday, September 18th
A trip to the hospital after school for radiation practicing. Larry and I have our doubts as to whether Liam can stay still. There is a flurry of e-mails with Child Life to discuss strategies for how to prepare Liam for this experience. The thought of the guy on the move having to lie perfectly still in a room by himself while red lights line his body including straight down his face, a camera rotates around him and the machine makes a loud ticking noise This is a new experience for Liam since the last time he did radiation, it was under anesthesia. More on radiation, take 2, later.

Friday, September 19th
An early morning arrival and full slate of activities – Access his medical port with the scary-looking 1-inch that pierces his skin to reach the port, bone marrow procedure (this is the one where bone marrow and samples of bone are taken from four sites in his pelvis), followed by a CT scan, followed by an MIBG injection. Doesn’t sound so bad, right? The tricky thing is the timing. The CT scan requires drinking 8-ounces of apple juice laced with contrast at least one hour prior to the start of the CT and the MIBG requires having swallowed the awful tasting pure iodine drops at least two hours before the MIBG injection of radioactive dye in order to protect his thyroid. Timing is critical and a two-hour delay to the bone marrow procedure meant forcing a groggy 4-year old just waking up from anesthesia to drink something he doesn’t want to (he knows all about contrast) while checking your watch every few minutes to make sure you also get the iodine drops in by the required time and dealing with anesthesia demands. Anesthesia makes Liam do some weird things. On this day, the weird thing was insisting with a crying fit that I remove the pressure bandages that were covering the four sites on his pelvis. These are the same bandages that have also remained in place for five weeks when he is convinced they need to remain in place until they literally fall off his body. So we’d take a sip of contrast, and I’d rub the bandages with the adhesive remover for a few seconds, sip, rub the bandages with adhesive remover…his turn, my turn until he had consumed all the contrast and I had carefully removed all the pressure bandages while making sure none were still bleeding.

We arrived at 7:20 a.m. and didn’t leave until after 4 p.m. As Liam would say, it was “no fun. No fun at all.”

Saturday, September 20th
We arrived at the hospital at 9 a.m. for his MIBG scan. This is the super scary scan that lasts almost two hours. The normally bustling waiting area with varying degrees of worry on people’s faces was dark and quiet. Benson the technician was waiting for us. Liam was the only patient in sight or sound. We passed by the interpretation room that is usually filled with doctors reading scans of patients of all ages and stages of disease but today it was empty. The room with the MIBG scanner was darkened. Because we were doing a scan on a weekend and the pediatric day hospital was closed, he wasn’t able to receive an IV dose of medicine that tends to make him drowsy. We gave him a pill version of the medicine, but in the past it hasn’t done much of anything. This would be the first scan Liam went through without a little help of some sleepy medicine via IV and it would be a big test. Could he do it? Could he stay still while a 3’ x 3’ plate was within inches of his face? Could he stay still while two plates were positioned on either side of his body as the stretcher inched past the plates. Could he do it first thing in the morning when he tends to have the most energy? He hopped up on the table with duck puppy, big puppy, monkey puppy, little puppy and his two newest stuffed animals that have joined the posse, placed his head on his beloved elephant-shaped pillow and declared that he was ready. Two rolled-up towels were positioned on either side of his head and taped across the top to help him hold his head still; his arms were positioned next to his body and he was reminded not to move them even to subconsciously play with his two favorite loveys, duck puppy and big puppy, which he holds in each hand during the scan; and a 2-foot wide Velcro belt was strapped across him to hold him in place and serve as a reminder to stay still. He started shivering even with super soft yellow blankie covering him. Benson brought him a heated blanket. He said he was warm and that we could start. He did beautifully, through three quarters of the scan. And then he started having a hard time. He was fidgeting. He asked me to rub his head. He couldn’t get comfortable. It was becoming extremely difficult and Benson kept coming in and rechecking Liam’s position to make sure the test would be OK. And finally, finally…it was over. As we unstrapped Liam and let him sit up, I put my hand on his back and found that it was completely soaked. The back of his head was dripping with sweat. His pillow was soaked. No wonder he was fidgeting – he was hot and sweaty! He was supercharged with pent up energy and wanted to see his picture. Benson went over to computer in the room to pull up the scan. Liam stood perched on the top of a hard drive studying the picture. I nervously looked at it hoping I didn’t see anything lighting up which shouldn’t be lighting up which would indicate cancer. The salivary glands along his jaw were glowing…that’s OK…the thyroid was glowing…that’s OK…the area near his port was glowing…again, OK…and then as we worked our way down his body I saw a small spot glowing near his right kidney, the site of his surgery. I quickly asked Benson what I was looking at. He didn’t really answer me. I asked him what it was. He said he didn’t know but that’s why the radiologist who read the early scan ordered another view be taken. I could feel the bile coming up my throat. I urgently but not too urgently asked Benson what it meant. He replied in his sing-song voice and chipper accent, “It might be nothing.” Whoa…what do you mean “might?” Might? Might? I felt my knees turn to Jell-o. I wanted to run to the radiologist’s office and have him or her tell me right then and there what I was looking at. I tried to reason with myself and managed to pull myself together enough to seem calm around Liam who was thrilled to be looking at a picture of his inside body. We left. I e-mailed Dr. Kushner from the cab knowing he works almost every weekend and that he would certainly see my e-mail. I kept trying to reason with myself, but it was really hard. We arrived home. Larry asked how it went. I told him. He started to do the same thing I was doing…it couldn’t be…but it could be…it had to be something else…but it might not be. And while we were both confident, it was still unnerving. I kept checking my e-mail all weekend. No response on Saturday. No response on Sunday morning. No response on Sunday afternoon. OK, was he not getting in touch with us for a reason? Was this the one reason he wasn’t in the office? Was he totally annoyed at me for acting like a paranoid mom and was too irritated to respond. Was he waiting for a second opinion on Monday morning? Was he waiting until the weekend was over before contacting us? It was a real mind-over-matter experience but by Sunday evening with no response, it was becoming an exercise in torture. We were both becoming stressed playing the waiting game. Finally, finally Monday morning arrived and we knew we’d have a response. Monday morning came and still no answer, even though we know Dr. Kushner arrives early. I dropped Liam off at school. No answer. I went outside with three of my non-cancer mom friends who encouraged me to call him. I did and got one of his assistants. She took a message and told me she’d have him call. Still no answer. School was over at noon and still no answer. Liam ate lunch. No answer. He took a nap before having to head back to the hospital for radiation simulation. No answer. We hopped in a cab to go to the hospital. An e-mail popped in from Dr. Kusher. Should I open it? Do I dare when I’m alone, with Liam, on my way to the hospital. I had to know. I needed to know. I opened the e-mail. It read, “It was nothing. MIBG negative – no NB. EXCELLENT.” OK. I can breathe again. I kissed Liam’s head over and over and over and blinked back the tears.

During our time in patient in the noisy room, we discovered that listening to music helped him to fall asleep at night. True to Liam spirit, he wanted me to be a part of the experience so he insisted that we share the headphones. We’d be lying on our sides, face-to-face so close that our noses would almost be touching so that we could share the headphones. I’d scroll through the songs and he’d shake his head yes or no if he wanted to listen to it. It was a series of no, no, no, no. And finally he heard a song he liked. The song was “As” by Stevie Wonder. And from that night on, he wanted to listen to that 7+ minute long song every night because, as he put it, it made him think about me, Daddy and Ella….that he’d love us always. Now, go look up the song lyrics or listen to the song and know that I’ll be loving you always for being there with us.

Tuesday, September 9, 2008

Liam loses a friend, the world a scarlet haired princess

Today is one of the saddest days we have experienced since we started this journey over a year ago. Jessie Garren, the lovely teenage girl who became Liam’s dear friend and whose family has come to be close friends of ours, lost her battle with cancer last night. Jessie’s spirit and faith were beyond compare and the grace with which she faced her disease as a young woman was an inspiration to all who knew her. Our hearts are heavy and we wish her family our love. We know their faith will carry them on as will the peace of knowing that there is a loving, caring, adoring, young angel watching over them from high above. We love you Jessie.

Here are a couple of posts from last year related to Jessie
MARCH 20th 2007
He has a girlfriend, Jessie. She and her family are here from NC for treatment. (www.caringbridge.org, click on "visit a website," type in jessiegarren...with no space between the first and last name. Jessie and Liam made an instant connection when they met when they were both in patient. Now both are undergoing out patient treatment. We love Jessie. Liam loves to hold Jessie's brother's hand. Whenever Liam sees Jessie's brother, he insists that he holds his hand and participate in whatever activity he's doing. Last week they watched the movie "Cars" together.
MARCH 14th 2007
Liam has a friend name Jesse who I will guess is about 15 years old. She is a sweet young girl with beautiful red hair who like Liam seems too young and too cute to be so ill. She made Liam several gifts today, one being a star that states “Liam is a Super Star”. Jesse is fighting cancer as well and has been in a great amount of pain but today she found the strength to reach out to our dear 2 year old son who in turn rewarded her with one of his coveted popsicles. I think Liam and I will make Jesse a glitter card tomorrow to cheer her up even though I have a major aversion to glitter.

Saturday, September 6, 2008

Things One Never Thinks About

We all know that our bodies are constantly exposed to bacteria, but for those of us with robust immune systems we rarely give the constant contact and potential invasion a second thought. For a person with a compromised immune system, like Liam’s is from harsh chemotherapy drugs, danger lurks literally everywhere from microbes that like to hang out on human bodies to every doorknob and every sneeze within a 100-foot radius. It is a small miracle we’ve avoided infections since we’ve been on the journey. I can’t even begin to imagine the daunting number of blood cultures that have been done on Liam’s blood since February 27th, 2007, but it has to be in the hundreds. A blood culture bottle is shaped like a Tabasco sauce bottle that’s 25 percent filled with what looks a balsamic vinegar combination that’s heavy on dried herbs. We’ve seen so many of these bottles and every time every blood culture has been negative, until this time. It figures, our last round of high-dose chemo and he gets a positive blood culture.

Last Thursday, August 28, Liam finished his 2nd round of his 2nd time around of high-dose chemo. On Friday, we went back to check his blood counts and were surprised to find he needed blood. Of course we knew he’d need blood at some point, but we didn’t expect he’d need it that soon. But then when you start thinking about the number of vials of blood that are taken from him during the four days of chemo (at least five a day) to check every aspect of his blood and the volume of fluid he received intravenously all week to keep him hydrated and protect his organs from the toxic effects of chemo, it’s not surprising. So, we “tanked up” on some red blood cells for the weekend which came courtesy a volunteer who donated directly to Liam. (Thank you donor.) It’s a long process – about six hours – to receive a blood transfusion so a quick trip to the hospital becomes an all-day affair. But the good news coming out of the visit was that Liam could finally be untethered from the cumbersome adult-size backpack filled with fluids, pump and extra battery that has followed him around since Monday. On our way home from the hospital, we saw Ella out for a stroll with two of her baby dolls and her ever-present Kenyan companion, Mena. Liam and I yelled out the cab window to Ella. She heard our voices but didn’t see us at first and frantically searched car windows looking for us. When she finally saw us, she screamed with delight and excitement and couldn’t wait to see us. The cab pulled up in front of our new city home which is four floors above a sushi restaurant, the driver started taking the various assortment of bags of toys, my traveling office and other goodies needed to get us through a day at the hospital and Ella and Mena stood ready to greet us. As soon as Liam emerged from the cab and Ella saw he was without the blue backpack emblazoned or maybe marked like a Scarlet Letter A with the Memorial Sloan-Kettering logo, she screamed with delight – “LIAM – YOUR TUBIES ARE GONE! YEAH! LIAM – THE BACKPACK IS GONE! THAT’S GREAT LIAM! GOOD JOB LIAM!” If only the people bustling by us to get to their important destinations had any inkling of the significance of the reunion between a free brother and adoring sister. It was an amazing scene the immediately brought tears to my eyes knowing that Ella is so aware.

We had a great Labor Day weekend in New Jersey of swimming, picking tomatoes, hanging out in a huge tent that sleeps seven erected in the yard, watching Liam and Ella play with their treasured marble collections, cheering Liam on as he rode his super-fast Harley Davidson Big Wheel-esque bike complete with long handle bars and a chrome fender to protect the front wheel, creating impromptu science experiments, taking baths and showers (two things that can’t happen while he’s connected), eating together as a family in the dining room at Liam’s insistence (the child who could care less about food is insisting we eat together as a family…what’s wrong with this glorious picture?), shopping for big girl underwear for Ella since she is officially out of diapers and most pleased with herself (she is now the very proud owner of a collection of underwear adorned with Dora, Curious George, Minnie Mouse, Daisy Duck, Hello Kitty, and Disney Princesses), we came back to New York and back to reality. It’s never easy leaving our home in New Jersey. You always feel like you’re giving up a little bit of innocence and the transition from one life to the other is never easy. But you savor the good moments and the addition of memories.

Tuesday was a blood check day. Liam, ever the more aware patient, wanted to know exactly why we were going to the hospital, what was going to happen and how it was going to happen. Me: “Honey, they need to check your blood to make sure you’re eating and drinking.” Liam: “Where are they going to take the blood from?” Me: “I’m not sure.” Liam: “Is it going to be from my finger or the big-boy tubie?” Me: “Honey, I’m really not sure but you need to prepare yourself that it might be from the finger.” Liam: “You mean a finger stick, Mommy?” Me: “It might be honey. Unless you want to do it the other way and put a needle in a vein in your arm?” Liam: “No Mommy, I think I’ll do the finger stick because it’s much more faster.” And then there’s Ella who we have to worry about. Mena: “Mamma Liam, can Ella and I go to Apple Seeds today?” Me: “Hmm. Probably not a good idea since Liam is likely at zero white blood cells.” Mena: “So no park, no Apple Seeds?” (Note: She says with hesitation knowing how much Ella loves Apple Seeds, her playground paradise.) Me, with regret in my voice: “Yes, Mena, no Apple Seeds or public places for Ella until Liam’s immune system recovers. And don’t forget to use lots of Purell and have her wash her hands a lot.” Luckily he didn’t need blood or platelets, didn’t have a temperature, but as expected was officially at 0 white blood cells. OK. Batten down the hatches…we’re back into hibernation mode. Good thing Liam and Ella are buddies. They’re, once again, going to need each other for companionship and comic relief.

Wednesday seemed to be going fine but, as anyone who keeps up with us knows, Liam got a temperature which is an instant admission. His temperature hovered for hours in the range of above 100.4 (the maximum temperature to win a trip to the hospital) but below 101 (when we start to get nervous) so we didn’t rush to get to the hospital. I was actually in a conference call when the news came that Liam had a temperature and continued the call for an hour knowing that Larry was on his way home. (Good thing there are only three short blocks and four long blocks between the office and home.) When I got home, Liam looked fine. He wasn’t the lethargic lump he was the last cycle of chemo. He was awake, alert and active. You wouldn’t know by looking at him that there was a battle raging in his body. And, to be perfectly honest, we were slow getting out the door because neither of us was looking forward to an extended stay in the hospital. As the cab, stuffed with a suitcase filled with matching pajamas (Liam insists his PJs match); rolling cart filled with games, toys, books, skeleton puzzle, alphabet and number flash cards, “What Every Four-Year-Old Should Know” books, rock collection, marble collection, small DVD player and collection of movies; alligator backpack filled with models from Smart Design, pieces of pipe cleaner, his favorite books including all of his Harry the Dirty Dog books, packets of pumpkin seeds he shows everyone but doesn’t want to plant, and a variety of other Liam treasures; my portable office with chargers; we were off. As the cab pulled away, Liam whispered, “I love you Daddy. I miss you Daddy. I love you Ella. I miss you Ella.” His temperature was 101.

We arrived at the hospital shortly after 5 and traveled the long hallways in the bowels of the hospital just off the front entrance, up an elevator and into Urgent Care. The lobby was packed with adult cancer patients and worried-looking family and friends. There were several people draped on stretchers in the corridor leading back to the bed area. It was quiet. It’s not like an emergency room you see on TV since this one only treats cancer. There’s no drama of gun shot wounds or car accidents, just the impact of cancer cells silently doing their awful march through a body. I surveyed the scene trying to figure out the easiest path to take to shelter Liam. I hate exposing him to people who look and act sick. He immediately picks up on it. The clerk at the desk was so inundated he didn’t even look up at me as he asked for my hospital card. And while looking at the wall of wood in front of him that separated him from the man at the desk who was too busy to even look up at us, Liam said to me, “Mommy – Over there is the little kitchen that has the broken juice machine.” He remembered from his last visit more than 14 months ago a detail as finite as a broken juice machine. OK, is this normal? And if he remembers this, what else does he remember? And, more importantly, what are his impressions of those memories?

I scanned the room looking for empty seats away from people who looked “really sick”, were coughing, throwing up, getting ready to pass out, or moaning and groaning. There was a seat next to the triage room. It was a prime end seat but, from memory, away from an outlet and I didn’t know if we had battery power in the DVD player. I sat down and positioned Liam in his stroller next to me but less than a minute into the wait to be seen, I could see him scanning the faces of people trying to assess the situation and turned his back on all the patients so that he couldn’t see anyone while suggesting we watch a movie. Of course, the DVD player needed to be charged. OK. Search for an outlet and hope I can find one in reach of our “safe” chair. And just as I was realizing there was no plug in reach and trying to figure out what was going to be the next move, we were called into triage ahead of all the other people waiting. It’s one of the nicest things Memorial Sloan-Kettering does for pediatric cancer patients and I was grateful to be able to navigate Liam away from the waiting room. There’s always this uncomfortable feeling between me the mom of a pediatric cancer patient and adult cancer patients as they look at a woman pushing a stroller into Urgent Care. Am I the sick one or Liam? And when they realize it’s Liam, there’s another type of uncomfortable feeling of, “Oh – A child having to deal with what I’m dealing with? How awful.” But then there’s me who tries to act like it’s not awful. It’s not a big deal. It’s manageable. Deal with it.

Liam’s temperature was 104.3 and rising.

We got to one of the Urgent Care rooms which are rooms with walls, not curtains, and a door. I shut the door to keep out the sights and sounds. It felt like a war zone with Liam as a soldier who shouldn’t be there. Liam didn’t want to get out of his stroller. He was taking the position that if he didn’t get out of the stroller we wouldn’t be staying long…we’d be going home soon. The nurse came and with his temperature rising as quickly as it was, we quickly discussed Liam’s preferences for having his medical port accessed. A parent and nurse in this situation work as a duet complementing each other and I’m always grateful for the nurses who ask what my son’s preferences are before his personal space is invaded in order to make things as comfortable as possible for him instead of just going about their job. But the tone of the conversation was urgent. We needed to draw blood cultures and get them to the lab, get some Tylenol in him to get the fever under control and infuse antibiotics into him as quickly as possible to stem the tide of whatever was causing the fever since his body had no ability to defend itself. Children have been lost in as little as 20 minutes if there is a particularly prolific bacteria multiplying and dividing in a perfect setting of no white blood cell predators. He was accessed with as little trauma as possible. (“Mommy – Do we have to?” “Yes Liam, we really have to.”) The tears ended quickly when Liam realized there was an opportunity to send his blood through the pneumatic tubing system. Ah, yes, nothing like a button to distract Curious George. Unfortunately the pneumatic tubing system that links departments like Urgent Care to the blood lab was down so it was back to the room and the stroller. By now Liam was feeling the effects of the invasion in his body and wanted to be carried, covered up and in a dark room, clutching the box that had just arrived that week from friends in Texas of colorful plastic beads he was going to make into jewelry.

It was about 6 p.m.

The pediatric fellow on duty came to examine Liam. She commented on how good he looked. Yes, we know…he looks good…something we’re incredibly grateful for and also what makes us feel like, “What the heck are we doing here in this situation with a child who looks like a picture of health…except for his bald head which, on Liam, is actually cute.” There’s a policy that a child coming from the “outside” can’t go to the pediatric floor until they’ve received a dose of antibiotics which was going to be an hour and a half infusion.

It was now 7 p.m.

The antibiotic finished dripping into his central line around 8:30. As the minutes went by, he became more fatigued. He wanted one thing from me – to have his feet rubbed nonstop.

We waited for our room on the 9th floor to be readied. We waited for the nurse in Urgent Care to report to the nurse who would be taking care of us upstairs what had happened to Liam during his time with her. We waited and waited for a blue-jacketed hospital escort to take us to the 9th floor. As the minutes turned into hours and a very inpatient patient became more and more agitated in the tiny room waiting to be taken to the floor with the tiny playroom, a male nurse who recognized us graciously offered to take us upstairs. As he hauled our load of “keep Liam entertained” stuff, I asked him what room we were going to. He said 25A. Room 25. It was the room we were in the last time. Somehow that seemed like a cruel joke to play on us – to put us in the same room. At least we weren’t in the same bed. We were on the “big” side of the postage size stamp room with one and a half arm’s length of room around the bed. Yes, it’s that small…one and a half arm’s length is all the room you have. I’ve measured it.

It was 10 p.m.

We walked into the room. The curtains were pulled back to give the room a larger feel. There was an Asian mother sitting next to her toddler who was banging on a small xylophone. A nurse was sitting on the bed to reach the toddler’s tummy and take care of something. I said hi to the mom. She didn’t say anything.

It was 10:30 p.m.

Liam and I settled in. The resident, who looked like she could be my baby sister, came in to talk with me about Liam. I hate those meetings with the resident…the ones where a young doctor who is clearly a bit uneasy about having to show their authority to someone who is much older and a protective parent of a young child has their first encounter with you. She solicitously said, “I know you’ve been through a lot tonight and you’ve probably answered a lot of questions, but I need to talk with you about your case and understand the history of it.” My spine tingled and the hair on the back of my neck rose. We don’t talk about Liam as a patient in front of him, especially around someone new who might say the “wrong” thing. I couldn’t leave Liam who wanted me next to him so that I could talk with her out of earshot. I tried to nicely but very firmly tell her there were probably a lot of questions about his history I wasn’t going to be able to answer tonight. And then in my “code” language tried my best to explain why. She seemed surprised and thrown off balance. She didn’t know where to go. So she sputtered, “I just need to know how he’s been feeling in the last few days.” Oh! OK…those questions I can answer. Yes, he has been feeling fine. Yes, he’s peeing and pooping. Yes, he’s drinking and eating (as much as I would expect at this stage of chemo). No, he’s not complaining of anything. No, he has no rashes I’ve seen. And then she said, “I understand you were supposed to go to the clinic (aka day hospital) today but missed your appointment.” Grr. This is why I don’t like dealing with residents. No, we didn’t have an appointment at the clinic today. We were in yesterday for counts. Liam’s team knew he was running a temperature, as they’re supposed to, but we were not due in the clinic today…thank you very much. And then she said, “He got his G shot downstairs…” “Wait – What? No he didn’t. He didn’t get a G shot downstairs. (G meaning GCSF shot which stimulates white blood cell production and, my understanding, was invented at Memorial Sloan-Kettering.) “Well, maybe he got it when you weren’t in the room” “I didn’t leave his side.” “Maybe he got it and you just didn’t realize.” “Impossible.” “But he could have gotten it intravenously.” “That would be a first since my understanding from Dr. Kushner is that G should always be given subcutaneously as a shot to be the most effective and I always know what my son is receiving before it goes on his IV pole.” “We give it often as an infusion via an IV line. I’ll have to call the pharmacy downstairs to confirm if they did or didn’t give it.” OK, Miss Resident. Thanks for the vote of confidence. My son did NOT receive an injection or infusion of GCSF while in Urgent Care. End of story. So then she starts with her talk about how Liam will receive a thorough examination in the morning from the attending where they’ll check him out head to toe. I told her that would be a first – we certainly are visited by the attending on a daily basis but I can’t think of a time we’ve been thoroughly examined by the attending upon arrival for fever during neutropenia. She didn’t like that answer. It was now after 11. I had no patience left, knew that despite her doubt we hadn’t received the G shot and that it stood in the way of Liam’s desire to go to bed, and was consider pulling out my sunglasses to protect Liam’s light-sensitive eyes from the bright lights shining in his eyes from our neighbor’s side of the room. I asked her if she knew if our neighbors were night owls. She said she didn’t know. I asked her if she would ask them to turn off their bright lights and turn on the smaller bedside light that is supposed to be used after 11 p.m. She suggested I talk with them myself. I asked her if she’s ever shared a small room with another family under conditions like these – it’s not the easiest thing to do. She wasn’t going to help.

The resident left. Adrienne, the great Filipino nurse who we got to know during our last stay, came in with the G shot. We exchanged hellos. I asked if the resident checked to see if Liam had received the injection in Urgent Care. She said she did and he hadn’t. After the deed was done, Liam wanted to go to sleep but kept complaining it was “too sunny.” Our neighbor’s lights were still on. It was after midnight. They were speaking a foreign language in a loud tone in varying degrees of alarm. At 1 a.m. after trying to shield Liam’s eyes, I finally took four steps to our neighbor’s side of the curtain which was drawn back just enough for me to see in. I said, “Excuse me but my son can’t sleep and he’s not feeling very well. Would you please turn off the overhead light and turn on the one next to the bed?” The mother said she didn’t understand English. I pointed to my watch and pointed to the lights and said, “Please, turn off.” She said to me, “Later!” I said it was later and needed to be done now. She refused. Finally, after a bit of a Mexican stand off, she turned on a different light that still bright but not quite so bright. Liam finally was able to fall asleep.

It was 1:30 a.m.

P.S. Our neighbors didn’t silence their IV pump alarm once during the night but instead would wait for the nurse to arrive. Why someone would subject not only themselves but their child, the child sleeping a few feet away, themselves and the other parent in the room to an irritatingly and appropriately urgent sounding alarm instead of hitting the “mute” button is something I’ve never understood.

Liam’s temperature was persistent throughout the night. 104+ and at one point was close to 105. He was shivering uncontrollably and, like a neglectful mother, I forgot to bring his down comforter to the hospital. The thin, rough cotton blankets in the hospital weren’t keeping Liam warm…even with four piled on top of him. Every part of his body was shivering and he would tell me, “Mommy – I can’t stop it. Why am I shivering? What does it mean?” It’s a new question for him to ask what something means. He doesn’t only want to know what something is, he wants to understand its meaning. Tylenol was given at every opportunity which meant sitting him up and convincing him to take a pill. My hands felt numb from rubbing his entire body nonstop. I was angry at myself for forgetting to bring his down comforter. I wanted to call Larry and tell him to get in a cab with Ella to bring it to us…even if it was 3:30 a.m.

Thursday Morning, September 4th

We met with the attending in the morning. The attending, a new doctor to us, swoops into your room with a phalanx of residents in tow…it’s less than 10 residents but more than 5 and makes you feel like a lab rat as the residents listen to the attending, consult their piece of paper with stats about your child, and almost sheepishly look at you. It’s supposed to be a learning opportunity for the residents…something I can understand and appreciate but usually don’t like to expose Liam to. We talked. He told me Liam’s blood culture from Urgent Care came back positive. I was dumbfounded. Liam’s very first positive blood culture. So much for that clean record. Damn. And with that news and Liam’s uncontrollable shivering and high temperatures came a new level of worry and anxiety. It was a brief meeting. It would take at least 48 hours if not more to identify what bacteria was wreaking havoc. He was receiving three broad-spectrum antibiotics that hopefully would be effective against this bacteria. Of course there are antibiotic-resistant bacteria and we hope Liam doesn’t have one of those, but we don’t know yet.

It was a fairly quiet day. Liam didn’t want to do much. He was too uncomfortable from the fevers and because he had to go stinky but was too afraid it was going to hurt and was doing everything he could to avoid it. Daddy visited in the morning and got Liam’s first big smile of the day. Liam kept telling Daddy how happy he was to see him and when it came time for Daddy to leave, Liam insisted on walking Daddy to the big glass door that separates the 9th floor from the outside world. With Daddy on the other side of the door, Liam whispered, “Daddy – I miss you. I love you.” We both had tears streaming down our face when Daddy left.

Fireman Tommy, our Fireman Tommy, came to visit and brought a fireman doll from the Fire Zone in Rockefeller Plaza. The doll with 22 moving parts and dressed in a NYC fire firefighter’s outfit including chock blocks to hold open doors, was immediately named Fireman Tommy. Fireman Tommy doll has not left Liam’s bedside. Fireman Tommy’s visit immediately improved his mood and brought out the mischief in him. Throughout the day he made an armful of bracelets and necklaces with his plastic beads, gave a bracelet to Courtney, one of his favorite nurses who was his very first nurse when we arrived at Memorial Sloan-Kettering, and poured over a new book on how things are made. His favorite thing so far is the toilet with the remote control. I saw the name of one of our roommates from our last visit on the name plate on the room next door but for the most part didn’t recognize any names, always a good thing.

Liam’s fevers persisted. As soon as the Tylenol started to wear off, the fever would come back. We moved to ice packs to keep his body cool and looked at videos on YouTube of white blood cells attacking bacteria. And Courtney and I kept checking in with each other about the status of Liam’s bowel movements. Several times Liam tried sitting on the potty but was too afraid it was going to hurt so he wouldn’t go. He had a small orange pill in the morning that would eventually soften his stinky, but so far Liam was resisting all desire to go.

A war over territory lines with our roommate ensued all day. They kept pushing a table into our space so that the arm and a half of space between the edge of the bed and the curtain became more like a hand-width away. The nurses and clerks who take vital signs, and who all pretty much know us especially after Liam’s last stay where he played the candy man, would push back to communicate the boundaries. Several told me that the father and mother have both been staying there at night, a huge no no. I kept trying to be understanding. Their daughter is adorable. I’ve heard the family has been here for about a month and that they came from China. They speak no English. Their daughter is a new neuroblastoma diagnosis. They are, I’m sure, completely freaked. I wish I could communicate with them. They rely on a video interpreter to communicate with the doctor, never an easy thing.

Throughout the day you hear snippets of conversations. “There’s nothing else that can be done.” “Patient in 2 needs to get an MRI.” “That patient has to be taken to MRI in his bed and with his PCA pump for pain.” “I just finished doing an NG tube.” “The MIBG showed extensive disease progression.” OK – Get me out of here. Now. With my son. Who is healthy and going to be just fine, thank you.

Thursday Night

At 11:30 I asked our neighbors to please turn off the lights. The father shouted at me through the curtain, “YOU GO HOME!” OK. Let me get this straight. You’re telling me to go home? Come on folks. I know you’re from another country but we’re all dealing with the same thing here. Can’t we get along? Aren’t they from the country that just held an amazing Olympic Games that fostered a sense of friendship and hospitality? And you wonder why countries have conflicts.

Liam has fevers all night and uncontrollable shivering.

Friday, September 5th

Liam was a new guy when he woke up…with a start…wanting to “quickly, mommy, quickly!” go stinky. After a few rounds of, “it’s going to hurt” conversations, he finally went and was quite relieved. Who knew someone could have so much joy to see their child go stinky! His last fever was at 2 a.m. It was around 8:30 so we were beyond the coverage of Tylenol. OK…we’re moving in the right direction. Now, if only we have the right combination of antibiotics to attack the multiplying invaders. I found out during the attending’s visit that Liam had two positive blood cultures…not one…and consideration was being given to take him to the operating room to remove his central line which is likely harboring the bacteria. The bacteria identified in his blood likes to cling to plastic. If he had one more positive culture, it was a definite trip to the operating room. It wasn’t the news we wanted to hear. Please, fevers, stay away. Please antibiotics, do your thing. Throughout the day Liam continued to improve. We were in the play room. He was warming up to his role of 9th floor mayor. He visited the nurses’ station. He received both a blood and platelet transfusion. He made bracelets for other patients including 3-year old Kasey who stole our hearts. She changed into a dress that matched her yellow and pink bracelet. He ate jelly toast that I loaded with as much high fructose sweetened grape jelly it could hold without folding. He drank but his favorite chocolate milk that has kept weight on him now tastes funny, likely a side effect of chemo. He’s back on whole milk…which I’m OK with for now as I’m quickly calculating calories. He anxiously awaited the arrival of Frank the candy man who comes every Friday night with two other volunteers to distribute candy and other sweets to patients. He has been doing it for years, maybe decades, and uses his own money to pay for the candy. When we finally see him, I recognize some of the Liam’s inventory from his candy store on the cart which makes me happy to see. And much to my surprise and I think Frank’s, Liam clung to his beloved Candy Man insisting he hold his hand. Liam helped push the candy cart, would go into the rooms of patients who could see visitors, and announce the arrival of the candy carts. He would help people make choices – “Oh – This one is really good and it’s good for you. You should try it!” He would tell people “thank you” when they took something from the cart and would push someone to take more if he felt they didn’t take enough. He would rearrange the cart between rooms to make sure it looked nice and neat and chased down a doctor who passed by the cart without taking anything. (With Liam’s insistence, the doctor took some sour candies.) And then after the candy man had left, Liam saw his girlfriend, John’s mommy, who were our roommates for a few nights during our last stay. He loves John’s mommy as much as he worships John. They were admitted on Thursday night and are in room 17A, the room we lived for almost a month. John’s mommy spent some time with Liam so that I could go to the bathroom and brush my teeth, things that are done in the non-patient bathrooms on the other side of the floor from where we’re located. He was completely goofy with her wanting to show off for her. She spent time with us in the playroom and even got Liam to drink an entire container (albeit only 4 ounces) of whole milk. We moved onto a second container. Liam took one sip and immediately started complaining about how yucky it tasted. I took a small sip and almost threw up. The milk was completely soured…huge curdles of rancid sour milk. And, of course because he has no white blood cells and there could be dangerous bacteria in the milk, we had to let the doctor who was there at 10:30 p.m. know what had happened. Liam rode a small push car around the floor. He keeps talking about how exercising will wake up his white blood cells, which is the rumor on the 9th floor. And around 11 p.m. we attempted to go to bed, but our roommates were having some issues (stinky issues over there too) which meant lights on and noise. I think it was around midnight Liam finally went to sleep but it might have been closer to 1. It’s now 11 a.m. on Saturday morning and Liam is still sleeping which is a good thing. Larry brought the white noise machine that’s in his bedroom to the hospital to help mask some of the noises and the time to myself has given me a chance to drink a cup of coffee and read up on gram positive bacteria. He has had his temperature and blood pressure checked every four hours and so far, hasn’t had a fever in 33 hours and his third blood culture hasn’t grown anything in more than 24 hours. The blood culture won’t be final until 72 hours but considering how the other two cultures bloomed with bacteria very quickly, this is a positive sign.

During Liam’s huge Valentine’s Day extravaganza, one of the packages we received was from a couple with a young son. The Daddy works for Life is Good. They sent an amazing package of goodies for Liam…hats, t-shirts, little boxer shorts, stickers, and a Life is Good book. Liam and Ella decorated his gator and fire trucks with Life is Good stickers. It’s a mantra we don’t need to be reminded of and very much appreciate. I had pulled the family’s note aside with the intention of following up with them, but Liam confiscated the card and it disappeared in one of his storage spots of Valentine’s cards that he has hoarded like a squirrel hides nuts. We find them everywhere…in the cooler in the garage, in suitcases, in drawers, tool boxes. Liam loves his Valentine’s cards and makes me read them to him all the time and tell him who sent each card. Some he designates as Ella’s so that El Bell gets to share on the bounty as well.

A few weeks ago we received some hats from Life is Good from a family in NJ whose daughter was in Liam’s preschool class for the few weeks he attended preschool before being diagnosed. They have been steady supporters who have been there since day one for which we are extremely grateful. As I looked at the hats with their life is good phrases, I was again reminded that yes, LIFE is good. We are grateful for every hour, every day and every memory we create and don’t take anything for granted.

Wednesday, September 3, 2008

Here we go again... split between 2 worlds

Liam's day started off by waking up next to me. I woke him by playing a You Tube video of an oinking pig on my laptop as I he was lying next to me in our bed and I was answering work email. He quickly rolled over with a big smile on his face when he heard the noise and immediately put in a request for Hurricane movies. Liam has been into learning about the weather and has moved from tornadoes and lighting to hurricanes. You Tube is an amazing resource when it comes to feeding Liams never ending curiosity. Ella joined us and was asking Liam if the video I was playing met with his approval...this one Liam? this one Liam..Liam this one? He is often too cool to answer her. I can see that her world revolves around his and it is beautiful for it is absolute love but in another sense it is sad knowing that they are often not able to be in the same world. Later today this reality was to again be proven true and the pain it causes us all to be separated as a family emblazoned on the innocent face of my sweet Ella.

The call from Philomena our nanny came around 1 pm. "Babba Liam" (what she calls me -mean's Liam's father in Kenyan) "I just checked Liam's temperature and it is 101". My laptop was closed and in my bag before I even hung up the phone. I stood at the elevator of the building where our new OXO offices are located waiting for what seemed forever. First elevator full...second elevator full...third elevator full....4th elevator full but I was fed up since I had been waiting for 15 minutes! As the door started to close I yelled out this building sucks! All of the human sardines on the elevator erupted in laughter and started cheering. No doubt everyone shares my frustration when it comes to the terrible elevator service in this trendy new office hot spot. It took 2 more elevators to get one that had just enough room for one additional rider and to the dismay of all onboard I pushed my way in.

When I arrived home I went to Liam's room where he was in bed trying to take a nap. I took his temperature and sure enough it was 101. He looked up and just nodded in a way that he often does. It is his non verbal way of communicating so many things. Gretchen may have mentioned this in a prior posts. Liam's nod was intended to tell me Hi Daddy! Yes I know I have a temperature, Don't worry Daddy it's not very high, Daddy I love you, Daddy why are you here and not at work? All this in a nod and the warmth of his big brown eyes.
"Hey buddy" I said out loud. Go to sleep.
Liam pulled out his passy and said "Daddy, I'm going to take a little nap but when I get up I want to play cars and blocks with you..ok?"
"Sure Liam" I replied with a big knot in my throat knowing very well that there was no playing in the cards today. My son was soon going to be on the way to the hospital for an unknown number of days.
I left Liam's room and started gathering all of the things he would need, marbles, backpack, books, Leapster game, DVD's, pajamas, etc.
Gretchen arrived home from a meeting and went about getting the items she needed to endure a possible week long stay in a less than ideal environment. I went in to check Liam's temperature again to see if it had gotten any higher and found that it was still as it had been earlier. He woke up and told me he wanted to get up and be with me so I took him into the our bedroom and turned PBS Sprout on for him to watch. I explained to Liam that his temperature was too high and that it was supposed to be 3 points lower. He asked me Why? I then went about explaining how your inside temperature should be 98.6 and if you get a cold or you are low on white blood cells that your temperature can go up. I told him we needed to get medicine to make it come back down. He shook his head in agreement. I then told him he needed to go to the hospital and he was fine with that as well. Gretchen came in and told him she was going to take him and that they might have to stay the night and this was not what Liam wanted to hear. Immediately he started crying and saying he did not want to sleep there. Again and again he repeated this to us. It killed us to hear him say this. Again it was one of those situations where there is nothing Gretchen or I can do to make make this go away for him. It is something he has to do and has no choice. We have no choice. We explained to Liam that we would make it as fun as possible. I told Liam that mommy has a bag full of puzzles, books, videos, and projects, to make the stay as fun as possible. Gretchen knew this week was coming and after the last stay opted to be prepared this time by gathering a bunch of new objects, books, and interesting projects. Hopefully he will have many visitors to break up his days. He stopped crying but was not any happier about where he was going. I went and got the bag of fun stuff so he could focus on it instead of us getting packing bags. Ella wandered in from a walk with Philomena and wanted to know what was going on. "Daddy why are you not at work?" asked Ella
I explained to her that Liam had a temperature.
"Whhhhyyy Daddy?"
"Because he doesn't feel well honey" I replied
Next I told her that Liam had to go to the hospital and to my dismay she instantly started crying and while crying she said "I don't want Liam to go to the hospital"
So this brings my post today full circle..... back to my observation this morning about how their worlds are one and how Liam's world and hers are supposed to be one and yet they are too often split into two very different worlds. Liam must too often travel to a world where innocence is stripped away bit by bit and where life and death compete for keeps, where his best friend is not able to visit or share a laugh or tickle with him. A world he dreads and world we want nothing more than for him to one day soon be able to try and slowly forget the finer details of. Ella's word is turned upside down when her big brother, best friend, and idol is not within ear shot, not able to share marbles with her, or show her how she is supposed to do something. Our home is not a home without Liam in it and certainly not a home without both Gretchen and Liam missing from it.
Ella has asked me where Liam is 3 times and where mommy is twice. I always repeat her question back to her because she knows the answer. Where is Liam? In the hospital..Where is mommy? in the hospital with Liam. When is mommy coming home? in two days Daddy.....two days. Ella and I miss them both to the moon and back and it's only been 4 hours since I watched them pull away in a cab.

I rest assured knowing that Liam is without a doubt under excellent care when he is admitted and inpatient.
MSKCC is a world class facility but their room setup is absolutely terrible . Subjecting families to sharing a room means that more often than not one child is subjected to the depressing and disruptive noise and activity that surrounds a very sick child in the adjacent bed all night long. Gretchen does her best to insulate Liam from this barrage to his senses and memory but it is unavoidable because you cannot get away from the misery that may be in the bed on the other side of the curtain. MSKCC is one of the few if not the only major pediatric cancer center to subject their child patients and their families to this environment. Most other hospitals provide private rooms and mainly due to the possibility of infection. MSKCC requires you to be in patient after a fever while neutropenic and remain inpatient until your counts rebound but to then expose the child to other children and their stream of visitors makes no sense. It is what it is and there is no doubt they offer far superior care on many other levels but this is a true blemish that cannot be ignored. Let's put it this way...Liam has repeatedly shared with Gretchen and I that He "hates the hospital" and he is not referring to the day clinic and all of his friends there but rather to his last week long inpatient experience where he was bored, tired, and where he had an abysmal experience even though Gretchen tried to occupy his mind with countless games, distractions, visitors, etc. To a 4 year old it is nothing short of prison. Especially to one who is there due to a fever and who feels perfectly fine otherwise. A good comparison for parents might be taking your kids on an airplane trip. Toddlers can only take it for what 30 minutes before they are kicking the seat, running the aisles and irritating anyone within 10 rows of them? Now imagine being on an airplane with a 4 year old for 7 whole days! Get the picture? We are fortunate he feels as good as he does and we just wish he did not have to spend days when he is feeling so good inpatient connected to an IV pole and not able to enjoy being a kid. No kid anywhere in the world should have to endure the mental and physical abuse that children fighting cancer have no choice but to endure again and again and again. It is simply evil torture disguised as an incurable disease.