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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.