We haven’t written an update in a littler over a week. Every day continues to be a whirlwind and our situation, while one we’re becoming more comfortable with, is still very fluid and tenuous. It’s very hard to make any plans beyond the immediate. Today is Friday, June 1st. It will be our last day of round five of chemo, which hopefully will be the last. We didn’t quite escape hospitalization after round four, but we came very close.
Last Wednesday we came to the hospital for what we thought would be a quick trip – just a CBC - to see if Liam’s bone marrow had generated enough ANC blood cells (the white ones that do the fighting against germs) to declare him non-neutropenic. After a long wait…make that a very, very, very, long wait…we got the news that not only was he still neutropenic but he also needed both a blood and platelet transfusion. What we hoped would be a quick trip with Uncle Brad in tow, turned into an eight hour day. As we waited for the blood and platelets to arrive, another 1 ½ wait, the Child Life folks finally had the birthday party for Liam they had been waiting to have since his birthday. We kept delaying it based on his mood, but he seemed like it was something he would welcome. When Liam arrived in the play room for a “surprise,” he was excited just to see his adored clowns. When he realized the clowns were there to sing happy birthday to him along with about 20 other parents and children, he smiled the biggest smile I’ve seen on his face since his surgery. As the words to Happy Birthday rang out, he looked at the crowd of people singing just for him and then buried his face in my shoulder. At first I was nervous that the crowd and singing was too much for him, but he was loving it…just a bit shy. A birthday celebration on the 9th floor of Sloan-Kettering truly is a big deal and the voices singing were hearty and hopeful. After a round of pictures with the clowns, in which Liam actually smiled (and taken with a Polaroid because of privacy laws which means we can’t share them on the blog), Liam and Uncle Brad got busy ripping the Bob the Builder wrapping paper off the presents a volunteer for Child Life picked out for him. I was hopeful he’d eat some of the ice cream cake, but he had nothing to do with it. He kept telling me, “not now Mommy, later.”
We went back to our bed and waited for the blood and take a nap. Transfusions require not only a lot of time (they’re given separately to monitor for a reaction), but also a lot of temperature readings. One of the early temperature readings during the blood transfusion was 38.2 (38, or 100.4, is a temperature). The nursing assistant immediately called Nurse Emily. She retook his temperature and got 37.8. After a debate about whether it was a rogue reading, we decided to wait a bit. I knew that a temperature during neutropenia was an instant ticket back into Hotel Sloan. He didn’t have another high temperature reading the rest of the day. But the talk was shifting from “see you tomorrow” to “you’ll be spending the night.” We desperately didn’t want to see Liam back in the hospital. Not now. Not when he was making so much progress coming out of his post-surgery/post-chemo funk. I pled Liam’s case first to the nurse practioner and then to one of the doctors on the team. I really felt confident that Liam was fine and that it was just a matter of a different style in taking Liam’s temperature. (Emily held his ear out when she took it, the nursing assistant didn’t…couldn’t that have made the difference? I know when I use an ear thermometer, I rarely get the same reading twice.) I promised to take his temperature every 20 minutes during the night. I promised to stay up all night to watch him to make sure he was OK, if that meant staying out of the hospital. And then the sobering dose of reality came as Dr. Kramer told me that kids have been lost in less than 20 minutes during neutropenia because infections can take a hold of children so fast that even a short cab ride to the hospital isn’t enough time. OK. Let’s not go there, please. After a change in the antibiotic ordered for him from the one that can cause hearing loss (one of the things I’ve learned to ask about along the way) and one last blood test to see if his ANCs possibly had rebounded enough since the morning test to avoid the hospital stay (they hadn’t but they had climbed), we went over to M-9 in the red wagon that is his protective cocoon. Liam’s spirits were pretty good. He accepted the explanation that his temperature was high – he understands that a high temperature isn’t good – and seemed resigned to the fact that he was spending the night in the hospital. Now, here’s what amazes me. He asked if we were going to see Lindsey, one of his primary nurses on the in-patient side. He has figured out that Lindsey isn’t in the day hospital and that he only sees her when he’s staying overnight. And then he talked about peeing in a cup, the memorable activity he did with Lindsey the week of his surgery. He retold the story in his sing-song voice the way he remembered it and kept repeating it. Thank goodness Lindsey was working and greeted Liam with a huge, “Hello Handsome.” As much as we don’t like to be in-patient, it was comfortingly nice to see Lindsey. Daddy brought a suitcase with jammies, Cinnamon Graham Crackers and a loaf of whole wheat bread (Liam’s latest food obsessions – he carries a box and a Zip Lock bag of graham crackers everywhere with him and, when the mood strikes, eats up to 10 pieces of bread in a sitting), Magic Juice, more of Liam’s favorite soft blankies, and the Fisher Price birdie machine that lulls him to sleep, and our diapers (the hospital ones are horrible). Liam was upset after Daddy and Uncle B left and kept asking where they were going and if they were coming back. And then we went for a wagon ride. Being in-patient means putting your blinders on and trying not to see and hear what is going on around you. But it’s hard to not catch pieces of conversations, hear crying, or see sights you just don’t want to.
The good news is after a night of nothing growing in his blood cultures, no more high temperatures, and an ANC level that made him non-neutropenic, we were released on Thursday afternoon. It was a 20 hour stay…not bad. The first activity Liam wanted to do after we got home was to go to the fire house…pushing his Tonka dump truck all the way, even across the street. As I caught glimpses of smiles as strangers saw this act of childhood innocence taking place in the busy streets of New York City, I wished they knew what they really were seeing and what a huge accomplishment it was. And of course when we arrived at the fire house, Liam was greeted as one of the guys. Larry met us at the station and Liam, for the first time, wanted to put on his fire jacket, pants, and helmet. When we were in the process of getting on his gear, a call came in for then engine truck. Liam kept trying to get the clothing on as fast as he could while yelling, “wait for me, guys, wait for me!” He went running over to the truck as it was pulling out, and was so sad to see it leave without him. He said in his sweet voice, “firemen – be safe. Come back soon.”
We were back at the hospital on Friday morning for a CBC. After a nearly two hour wait for the blood to be drawn, we found out Liam needed blood and platelets again. We were told this round of transfusions used up his direct-to-donor blood and platelet inventory. It was another long day at the hospital, but this time without any high temperatures. We were cleared to go home to NJ with instructions to report back at 7:30 a.m. Tuesday for round five of chemo. We stopped at the Fire House on the way home. They asked him if he wanted something to drink. He asked for chocolate milk. They made him some in one of their large cups. He sat on the kitchen counter and drank two glasses of chocolate milk while hanging out with “his guys.” After he drank the second cup he said, “can we go home now?” It was nice to be able to tell him yes, we could.
A short rant: After the unanticipated overnight stay from Wednesday to Thursday, an overly long wait for a quick test that can be done in less than three minutes was not what was needed. The balancing act comes in trying to mask frustration from your child in order to keep their spirits up while trying to calmly answer the question repeatedly asked over and over and over again, “can we go home right now?” We’ve decided that Sloan-Kettering needs a sound-proof frustration room for parents. It has to be a place where parents can go to release tension out of sight and sound of their children. What I wouldn’t have done for a good scream and punch at a punching bag to get out my frustration on Friday. I see names of people all over the hospital noting donations that have made new rooms, wings, and buildings possible. Maybe we’ll have the Gretchen and Larry Witt Frustration Release Room, complete with sound-proof padded walls, punching bag, and things to kick. I don’t think there is one parent who wouldn’t want to go there at least once.
Memorial Day Weekend was spent in NJ playing “store” outside with Grandma, visits from Grandpa, time on the swing set with Uncle Ian and his girlfriend Megan who were in town from Colorado, painting outside, coloring the driveway with chalk, blowing bubbles, playing with a wind-up dog that he said should be his dog in his “city home,” fishing with his uncles, helping Grandma cook, watching the frogs in the frog pond, helping to plant vegetables in the garden, watching and learning about thunder and lightening, and pulling the child-size piece of luggage decorated with Curious George, a gift waiting for him when we arrived home, everywhere. He would not let the piece of luggage out of his sight and named it his “George the Monkey stroller.” And when he discovered there was a side pocket to store a cup of Magic Juice, there was a whole new level of adoration. It went to the grocery store, shopping at Costco, all over the yard, to the swing set, to bed, up stairs, down stairs, everywhere. Who knew that a piece of luggage with wheels would be such a motivator to walk? It was exactly what Liam needed to do to help regain his strength and once-again, it’s our support network that comes through with a gift that we never thought of but was perfect. One morning when we were home, Liam woke up at 6:30 and insisted on getting dressed and going outside. Outside we went. And guess what he discovered? That grass is wet with dew early in the morning. He found it fascinating. And after his early morning walk with his George the Monkey stroller, he came inside and went back to sleep. Over the weekend he started doing some of his mannerisms that he hasn’t done since early May. One of my personal favorites is when he responds to a question by tilting his head, putting his pointer finger in his cheek, and saying with a deliberate pause between the first and second word, “Um, Sure!” Oh, and another favorite is when he says, “Ohhhh – I know” as he’s trying to figure something out. He says it to himself all the time and it’s adorable. It’s bittersweet for us being home. As wonderful of a time as we were having, we knew it was only hours until he would be back on the chemo grind with the round that could cause hearing loss. It’s hard to constantly stay in the present and not think ahead…but it’s what we have to do. Today is today and who knows what tomorrow will hold.
Round five of chemo has been uneventful so far. Long days and long nights getting up every 1 ½ hours to change his diaper. George the Monkey stroller comes along stuffed with puppies and Liam’s toy of the day. He’s comfortable with the routine and the rhythm of the hospital. He’s excited to see his blue IV pump every morning. Yes, he gets excited to see an IV pump. (Anything mechanical is exciting for Liam.) He has a new routine at the hospital– personally delivering the tube of his blood to the blood lab and watching his blood being processed. He says, “ooohhh” as he sees the blood being drawn from the test tube through a little tube and then watches as it moves through the machine. I was told he’s the only child who personally delivers his blood. His innocence at what he’s seeing is sometimes painful. To make hospital time interesting, we try to use every opportunity to engage him. Every day he amazes us by pulling something from his memory bank we either didn’t know he knew or didn’t think he remembered and applying it. A month or so ago he saw the water tower across the street leaking. This week we’ve all been hit hard with allergies – lots of runny eyes and noses. Liam said his eyes were “leaking like water towers.” For the first time since surgery, he gleefully greeted Jessie and her mom with a genuine Liam smile which was so nice to see. The clowns continue to be his buddies. He loves to see them and this week started to joke with them. One of the clowns pretends he falls asleep when he plays a little music box. Liam started pretending to fall asleep too. The nighttime routine is making macaroni and cheese, hanging out with Daddy, and keeping Ella away from the George the Monkey stroller. He keeps asking to “take a little walk outside” at night so that he can take his George the Monkey stroller. Tuesday night was a walk around the entire block, stopping at almost every door to ask who lives there. Wednesday night was a walk to the fire station. One of “his guys” gave him the Elmo Visits the Fire House DVD. When we got home, he watched it over and over and over again. It went to the hospital on Thursday to be watched. Thursday night we met Daddy and Ella in Central Park for a stroll. He enjoyed looking at the large water fountain and took his George the Monkey stroller for a walk along the fountain. A family in the room next to Liam’s in the day hospital received some difficult news today. I hated seeing the look on the parent’s faces, a look I now know all too well. This round of chemo causes nausea. Until tonight, he hadn’t thrown up. Hopefully he’ll be spared from that side effect being too difficult. Now we wait for his counts to drop and get through neutropenia. I feel the need to be extra super vigilant about exposure to people and germs. I wonder if I can seal off the apartment and pipe in sterile air?
June 13 – 15 are big days for Liam. They are the days he is having a CT scan, MIBG scan and bone marrow tests to see how his body has responded to chemo. I’m hoping for a “wow – there’s nothing left” report. Based on the test results, he might need a sixth round of chemo. We hope not. If all is good, he moves to 3F8 treatments the last week of June. He’ll have radiation on his leg after the first round of 3F8, another source of nervous anticipation. But those days are an eternity away. First we need to get through his fifth round of neutropenia which will set in probably late next week.