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.
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.