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Saturday, April 28, 2007

Wednesday, April 25th Update

Today is Liam's CT Scan and the first of what we are expecting are several stem cell harvesting sessions. For the past few days, we've been giving him triple doses of "G" (GCSF) which stimulates white blood cell production. Larry holds Liam's arms, and I give the shot. I have to put the needle into a small opening in his "insuflon" which is a small tube inserted just below his skin. We don't have to inject him directly, just through the tube. The width of the tube is really small…really small…and I'm not exactly the best aim…but when the medicine in the shot is around $1,000…you want to hit the mark. But here's the problem, I'm trying not to be nervous and shaky when my son is crying hysterically because the sight of the needle frightens him and he knows that his arm is going to burn as soon as I start pushing the plunger. (Did I mention that I've been told the medicine burns like a bee sting?) And here's what's worse as a mother…I'm the one causing the pain and my son wants only me to comfort him but I'm delivering the pain. Oh goodness. Now, here's the other twist…we have to wake him up in the morning to give him the shot. What a way to start off the day. Back to Wednesday morning. There are two objectives for the morning. 1. Get Liam to drink the contrast fluid which is needed for the CT scan and 2. Give him a "G" shot. Now, here's the problem. If we give him the "G" shot too early, he'll be so upset that it will be nearly impossible to get him to drink the contrast. He's supposed to have it by 8 a.m. but we also have to make sure that he drinks the contrast by 9:10 so that we can get to the hospital by 9:30, the time we're supposed to arrive. After a pre-morning strategy session, Larry and I decide to focus on getting him to drink the contrast…and do the shot after he's had all the drink. So, I wake up Liam holding a cup of coffee and a sippy cup with 8 ounces of apple juice and the small amount of contrast. (I was told to mix the syringe of contrast I was given with 8 ounces of apple juice…what I now wished I had remembered to ask is if it could have been less than 8 ounces which all of the sudden looked like a huge amount.) I give him the sippy cup, tell him it's apple juice and cross my fingers that he'll drink it. He takes one sip, looks at me and says, "I don't want it. I want chicken." OK – This is not what I want to hear. I can't give him anything solid to eat because he's getting general anesthesia and he only wants solids. We spend the next 1 ½ hours doing everything we can to try and get him to drink, but Liam isn't having anything to do with the innocent looking sippy cup filled with the liquid that will ensure a clear CT scan that will guide the surgeons on May 2nd. In fact, it's not only not going well…it's going horribly. We try to convince him, cajole him, bribe him, beg him, pressure him...we talk about taking him to the Fire Station to enlist the help of the firemen…and we're constantly looking at the clock realizing that every minute that goes by takes us closer to the time we need to leave to get to the hospital. By 9:15 we call the hospital…speak to Ursula….tell her what's going on…and she tells us to come in and we'll have to take the tube down the nose approach. We tell Liam that if he doesn't drink the juice, he's going to have to have a tube put down his nose. He tells us he wants the tube. So we give him the shot of "G," console him while he's crying that it hurts, and hurriedly collect our bags (that contain baked chicken nuggets…his food of the week in addition to cheese puffs) and head off to the hospital. When we arrive it's after 10 a.m. We continue to try get him to drink. I notice that other parents are looking at us sympathetically having done the same dance that we're doing with Liam. You always feel so naked at the hospital. Pain is a common denominator and your pain is usually shared with everyone. We're anxious because we know he hasn't had the contrast and therefore can't get the CT but know we need that CT scan for next week's surgery. The CT is scheduled for 11:30 and we've already missed the two hour window of no fluids. We're asked if Liam can do the CT without anesthesia, we tell her we sincerely doubt we can get Liam to lay perfectly still on a table that's moving while he's passing through what looks like a giant donut. I talk with the nurse who was assigned to Liam and give her the "Liam likes to help" speech and doesn't like to be surprised…and then ask her if she can give me one of the tubes that would go down Liam's nose so that I can show it to him. While we're focusing in trying to get him to drink the contrast, there's a quick jockeying with anesthesia to see if they can take him later in the day. (Anesthesia is usually really busy.) By now Liam's beloved Teres from Child Life is involved. She shows Liam a demonstration doll that shows him what it will be like…he's crying…watches her…and then wants to help her give the doll fluids through the tube. (No, Liam – this is what is going to have to happen to you if you don't drink.) Someone has a pizza in the playroom which then sets Liam on a "I want pizza path." (Who in the world has pizza before 11 a.m. anyway?) I carry him to a phone, dial some numbers and place an "order" for a pizza and tell him it's coming. He calms down. We're given the news that anesthesia can take him at 1 p.m. which gives us 10 minutes to get the contrast down him…one way or the other. Larry puts a tiny bit of the tube up Liam's nose, and he announces he'll drink the juice. So for the next 10 minutes, Liam takes a sip, tells me he wants to drink sitting somewhere else…I carry him there….he takes a sip…tells me he wants to go somewhere else….I carry him there….and we continue until Ichi, a nurse practicioner on the neuroblastoma team, tells us he's had enough contrast to get a good reading. We go to Ichi's office, Liam immediately goes for the lollipops she keeps in her office…and when he's told he can't have one has a total meltdown – this was a really good one, the kind where I can't calm him and he's screaming so loud that it makes my ears ring. He's frustrated, angry, feels violated, and there's nothing I can do except hold him. He won't let Ichi take his temperature, won't let her touch him…all things we need to do to make sure he's OK for anesthesia. We finally get him calmed down enough to get his vitals taken, swing over to the IV room to draw blood to make sure he has enough white blood cells in order to do bone marrow harvesting, get hooked up to fluids for anesthesia, and then wait for the next set of instructions. Someone tells us to go to the second floor to radiology, and we wearily wait. I feel like a horrible mother causing my son so much pain.

We finally make it to radiology where Liam remembers watching Rudolph the Red Nosed Reindeer the last time we were there, and wants to watch it again. Guess what? We can't the portable DVD player that is in the waiting room area to work. I don't know if it was a case of stress overload, but no matter what I do…this child-friendly, purple-colored DVD player just won't work for me. Someone comes over to help. She can't get it to work either. Larry tries and he can't either. A man who works in radiology comes over, presses a few buttons and presto..it works. We watch about 10 minutes before we're told they're ready for our little Liam. I carry him into the CT room, remind him that this is where they're going to take his picture (the explanation I've been giving him about what is going to happen today and that he seems to understand), the anesthesiologist injects a white liquid into his tube, and within three seconds he's out. When he finally wakes up in the recovery room, I have the chicken nuggets, ketchup, squeezy juice, and cheese puffs laid out next to him. He seems to forgive me for denying them to him earlier and voraciously eats eight chicken nuggets, drinks lots of juice, and crunches on cheese puffs…but still asks for pizza.

OK – So much for the first part of the day. Now onto stem cell harvesting – a four hour process that require Liam to stay in a bed.

Stem cell harvesting is done in the blood donor room. We walk in, are brought back to a room that is separated from the room where donors are voluntarily donating blood with a curtain, and begin phase II of our day. Lots of questions, lots of explanation, and lots of waiting for blood to arrive for Liam to prime the machine before we can start. As I looked into the donor room at people donating, I wondered if they knew that Liam was one of the people who could potentially be receiving the blood or platelets they were donating. I wondered if it made them feel better about their donation of time and blood to see a young face of cancer. I wanted to go over and thank each person and tell them how much I, as a parent of child with cancer, appreciated their effort. The room that we are in has three beds and is lined with cabinets that store supplies. Many of the cabinet doors are open and I find myself looking at what is in them to see what supplies a blood donor room needs. Two of the beds have small TVs attached to the end of a long arm that allows them to be pushed up, down, sideways, etc. I know Liam is going to love this feature. We're the only patient in the room. The machine next to Liam's bed is old looking – from the 70s I'm told – and looks to me like something out of Frankenstein movie. There are tubes snaking all over the front of the machine in an up and down pattern. The entire front of the machine, which looks to be 3' x 3', is taken up with tubes. Above the machine is a steel bar that holds bags of fluid running into the machine and a lone empty bag meant to collect Liam's stem cells. In a big cabinet below the machine is a centrifuge that spins his blood to separate out the white blood cells. We're given a lesson in how the machine works and blood typing. Liam is fascinated by the process…he loves watching the machine. We go through the consent paperwork, continue the wait for blood, ask some questions about the average number of sessions patients Liam's age need to have in order to collect the required 7 million stem cells. When Liam's blood counts arrive, we're asked if he has been complaining of joint or bone pain. The "G" shots have done their thing and his white blood cell counts are extremely high….so high that one of the technicians says she wouldn't be surprised if we only had to do one session. True to Liam's style, he hadn't been complaining at all…he never does…even when his tumor was literally taking over his body. Larry arrives with a pizza, the blood arrives from the blood bank, and we're ready to go. At this point Liam has eaten eight chicken nuggets, the first time in months we've been able to get him to eat meat, and handfuls of cheese puffs. He then proceeds to eat nearly two entire slices of pizza which makes Larry and I ecstatic. He eats pizza while pushing and pulling the little TV in any direction that suits his whim and life, for a moment, is good. He finishes his pizza, announces he wants to lie on top of mommy, says he wants to watch Curious George, Larry and I nervously and guiltily look at each other because we don't have the portable DVD player with him, and try to explain to Liam that it might not be on to head off a meltdown. By some stroke of good fortune, Curious George is on and all is well. As Liam is lying on top of me, there are four tubes snaking along my arm that are attached to him. Three of the tubes are drawing and mixing blood coming out of his body and the fourth tube is returning blood to him. His entire volume of blood is cycled 4 ½ times through the machine and I can feel the warmth of his blood through the tubes. He has become fascinated this week with things his body can do and loves to tell people about it. The people in the blood donor room seemed to be surprised at how nice and polite Liam is. Even under incredible duress, he always says please, thank you, and no thank you. He has never once lost his manners during this odyssey which amazes me. And he always seems to be more interested in nurturing the nurturer by making sure people are OK. I can't tell you how many times I've hear him ask someone if they're OK which makes me so proud of him and breaks my heart. While he was napping, someone handed me a stack of small squares of paper stapled together with the names of the people who have donated blood or platelets for Liam. There are 53 names. 53 people have come forward on Liam's behalf to donate and several people have come multiple times. And as I'm looking at the names, I'm surprised that about half of the names are of people I don't know, something simply unbelievable to me. Unless those people come forward and tell me who they are, I'll never be able to thank them in person. Privacy laws won't allow for any other information other than the donor's name to be released. All I can do is thank them by continuing to be Liam's rock.

When we're finished with the process, we're told to not give Liam a "G" shot in the morning until we hear from the blood bank. They think they might have collected enough. How 7 million stem cells could be collected in one session seems unfathomable to me. As we're leaving, we find out there are two people in the donation room donating for Liam. One person I know and the other person I don't but find out she heard about us through a friend of a friend. Liam thanks both for their platelets (yes, he says the word platelets) and true to his personality, expresses concern that Marjorie might have an owie that hurts. He also makes sure she has a nice clean squeezy ball to hold onto. It was late and a long day for us, and I feel horribly that I didn't write down the name and address of the person who came to donate for Liam who doesn't know me, Larry or our son. I hope she knows how grateful we are for her gift.

It's pouring when we leave and it takes a long time to catch a cab. Liam is exhausted, we're exhausted and nervous about the results of the CT. When we arrive home, another Liam "elf," Lillian, is leaving the apartment with food for us. Her face is like an oasis of peace and it was so nice to see someone from the "outside world" after our long day in the trenches of our cancer war. I am beginning to understand why food is so important to soldiers…everything else in their lives is so difficult…it's nice to have one thing that is good. Lillian leaves and we stand at the counter eating chicken soup out of the plastic container she delivered it in and ribs on the aluminum foil they arrived. Ella eats some of the pineapple as a snack and loves it, and Liam eats more cheese puffs and chicken nuggets.

We ended the day with the four of us sitting in bed together serenading Ella with "Twinkle Twinkle Little Star" as she drank her bedtime bottle. It was Liam's idea to sing to Ella. Once again his focus is on others and not himself. And that is one of the things I love the most about my son. It's also very painful…how could a child who seems so alive be so sick? It just seems counterintuitive to the laws of nature.