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Wednesday, January 16, 2008

Back in the Eye of the Storm and The Loss of Liam’s Beloved Soft Yellow Blankie

So here we are. Scan week with the added bonus of a trip to urgent care on Tuesday night making it four trips to Memorial Sloan-Kettering this week. Liam started complaining of his ear hurting on Tuesday night, the night before he would begin the series of tests to scour his body to detect any signs of cancer. Neither Liam nor Ella have ever had an ear infection which is somewhat ironic…I know more about cancer than I do a simple ear infection. So at 8 pm after complaints of the pain getting worse followed by a temperature, it was off to the hospital. You know the routine…a temperature over 100.4 earns you an instant trip to the hospital for an almost guaranteed dose of antibiotics. Before we even had our coats on, Liam wanted to know if they were going to have to give him a “big boy tubie,” the way he explains having his port accessed. One of the signs he’s becoming aware of his world is that he always asks, “What are you going to do?” or “what’s going to happen?” But he says those words very quickly…almost as if he’s anxious and needs reassurance so that he can be prepared. What I find so incredible about Liam is that if you give him an explanation he understands and accepts, his immediate reaction is, “Oh – OK” and then moves on. I feel a tremendous responsibility to not only protect him but also be up front with him so that he can be comfortable with a situation.

Urgent Care is not our preferred place to hang out in the hospital. It’s set up for adults, not children, and I’ve never seen another child there in any of our visits. It has the feel of adults when you walk in…from the large-screen TV with CNN to chairs that don’t have enough room for a child to lie down. And then when you come in with a child, there’s the feeling of eyes staring at you…to the point that you want to say, “Yes, he has cancer.” After the diagnosis of an ear infection and a call to Dr. Kushner, the news was broken that Liam would need a big boy tubie. So, on with the numbing cream onto his port to make accessing less painful and the 30 minute wait for it to take effect. Now, I don’t know if it’s the fact that Urgent Care just doesn’t deal with children as much as the pediatric day hospital or if there’s some other explanation, but something always has the essence of not going quite right when we’re there. This trip’s “not quite right” aspect was accessing Liam’s port. For the first time since, he screamed in pain...it hurt as the needle pierced through his skin to connect with the port. Really hurt. He screamed like he has never screamed since having his port, and I bristled with anger of “how dare you cause my child pain.” But there was nothing I could do…the pain had already been inflicted. As Liam whimpered in discomfort and anger at having his personal space violated, I felt the pressure of the week of tests and the discomfort of being back in the eye of the storm of Memorial Sloan-Kettering. By the time we left Urgent Care, it was after midnight and Liam insisted on keeping him big boy tubie in…”Can I take it home, Mommy?” Good thing we didn’t really have a choice since the next morning was the beginning of the rounds of tests.

And now D-Day T-minus 10 hours.

It’s always weird to be back in the hospital groove after being out of it. Lights seem brighter as if you need to shield your eyes from the harshness. Sounds are more jarring…the wheels of IV poles, the urgent beeping of pumps. You notice every change since the last time you were there…new flat screen TVs mounted in key areas around the hospital announcing lectures on advancements in cancer-treatment, a different look in the lobby, new chairs in the day hospital waiting area. But what you dread is what you might find out…someone who isn’t doing well or someone who lost their battle. The storm of anxiety swirls around you when you get off the elevator. Being here is not the place you want to be…being here means you have a reason to be here and you really don’t want a reason to be at the hospital.

Wednesday morning and back in Urgent Care but this time because we’re not allowed on the pediatric floor until the results of Liam’s test to confirm he didn’t have RSV are back later that evening. This trip was probably my worst experience in Urgent Care. When I have to explain to a male nurse with attitude that yes, we did need to have contrast in Liam two-hours prior to a CT scan, not one as he was insisting, doesn’t make for the start of a pleasant day. See, again, Urgent Care isn’t used to dealing with children which, as a parent who is her child’s advocate, is totally frustrating. After convincing Liam to drink the contrast, we went to the CT scan area to wait. There was another child waiting. Liam watched the movie he always watches when we’re in the CT waiting area…Rudolph the Red Nosed Reindeer. It’s a routine…watch Rudolph while we wait to be called to the room with the “really big camera.” We’ve been here before…done this…it’s a routine we know but the importance of the test is never lost. Eventually he fell asleep while waiting which wasn’t surprising since he had been in urgent care well past midnight the night before. And then it was our turn. I carried a sleeping Liam into the room. The nurse asked where his IV bag of fluids was. We weren’t hooked up…Urgent Care forgot that detail. (Of course they did…another example of how they’re not used to dealing with children who receive anesthesia and therefore need fluids during CT scans.) She dug around the draws in the large traveling inventory of medical supplies and found a bag of saline and hooked him up. Liam woke up and wanted to know what was going to happen. He knew where we were…we’re always in the same CT room...he asked about different features on the camera…we went through them…he helped push the white medicine that makes him fall asleep…his head became limp and I placed his body, which clearly has become bigger since we began the odyssey, on the scan bed. I kissed him three times from me, Daddy and Ella; left his four puppies and pillow with the special healing crystal that saw Bob Woodruff to health at his side; and left my baby. When Liam’s under anesthesia is the only time I feel I can let my guard down. But this time unlike every other time we’ve gone through a CT scan, I didn’t burst into tears. I worked and watched the red light that was illuminated over the door to the room where Liam’s body was being scanned. And then the light turned off, the door opened, out came the nurse carrying Liam, my baby was transferred to my arms where he groggily looked at me, and went back to sleep. But I couldn’t let him sleep too long because I needed to give him the seven drops of pure iodine he needed to take in preparation for his MIBG injection. He hates the drops…with a passion. But the iodine protects his thyroid from the radioactive MIBG injection which can cause cancer to his thyroid and it has to be in him at least two hours prior to the injection. But here’s one of the things that always frustrates me about this process. One person tells you it’s OK to dilute the drops in liquid, another person tells you it’s not OK and you’re left not knowing what to believe because no matter who you ask you seem to get a different answer. So, I tried to give him the seven “icky tasking” drops that are in a syringe directly in his mouth while explaining to him that if he takes a big drink of milk as the icky drops are going in, he can get it down. He tries…sort of…and throws up right in the lobby of the CT area. Yeah, so much for that idea. Knowing how important it was to get the saline in him prior to the injection of radioactive dye, I diluted it in a few ounces of milk and watched him drink every drop of milk. I hope the person who told me it’s OK for it to be diluted was right.

After we finished we had two hours to wait before he could receive the MIBG injection. What did Liam want to do? Find Gabriel so he could use the floor polisher. He hasn’t talked about Gabriel in months…but clearly Gabriel is part of his long-term memory bank and hasn’t faded away as time has passed. It also makes me wonder what else is part of his long-term memory.

While in Nuclear Medicine, Liam surprised me by taking the hand of one of the nurses and asking her to show him around. She has taken care of him several times but didn’t recognize Liam with weight added to his little body and a full head of hair. She took him around, he held her hand and peered at screens and into doorways, she explained things to him, he listened intently and asked why a lot. He also spent time watching a patient have his lungs scanned which posed lots of questions about what lungs are, where they are, what they do, and what they look like.

On the way home that day, Liam told me he had a good day and wanted to know if I was happy he had taken his contrast so that the doctors could get a “good picture.” Why does he have to know what contrast is? I don’t care about me knowing, but I wish he didn’t need to know about things like pictures of his inside body.

Thursday was the day of the true test…the MIBG Scan. As we waited to be called to the room, Liam played with the collection of toys he brought along from the playroom. Another cancer mom whose infant daughter is on the same 90 day schedule as Liam was there. She was there the same day for the last round of tests. We talked and having her there to soak up some of my tension was nice. And then at one point Liam came over to me, put his hands on my cheeks, looked deep into my eyes and didn’t say a word...just stared. His eyes are gorgeous. They’re the most beautiful brown color, so bright and so warm. The whites of his eyes were really white. And as he stared at me I searched his face and looked at him and said, “You’re going to have a good picture, aren’t you?” And then we were called…and once again I felt Liam’s body go limp from anesthesia and I placed him on the scan bed. And once again I kissed him three times and left his precious puppies and pillow with him and left him the hands of others. I have a love/hate relationship with the MIBG machine. I want it to be thorough, but I don’t want it to find anything. I treat it with reverence but I loath what it does. It’s a long test…about an hour…and the time in the waiting area is the most unnatural experience knowing how important this test is. But you do it...because you have to…and each test you get through is another milestone.

Friday was the day of the bone marrow extraction from four sites in his pelvis. It was raining, hard, and we couldn’t find the cover for the stroller to protect him. He clutched his Cars umbrella while we tried to find a cab, never an easy task in the morning when it’s raining. It was still dark and Liam kept asking where the cabs were and why they weren’t there yet. We found one…dashed across a lane of traffic to reach it in the middle lane….got in…and were on our way. We exited from the door on the opposite side and dashed as quickly as possible to the doors of the hospital. As soon as we got inside the doors, I realized what had just happened. Liam’s beloved soft yellow blankie, the one that has kept him protected and warm every day, was left behind in the cab. We both immediately knew what happened. I told him we’d get it back and as soon as we checked in called the number on the taxi receipt to file a lost item report. Surely the cab driver who knew where we were going and knew a little boy was the patient would bring the blankie back, right?

We waited in the “procedure room” waiting area. This is the place where you can feel cornered. There isn’t a lot of room to escape a conversation you might not want to hear. And for the third time that week it was Liam’s turn and I carried him into a room to feel his body become limp from anesthesia. I had warned the team in the room to hide all needles and scary looking things. They did except for one syringe that was being emptied. Liam immediately asked, “what are they going to do?” And with this procedure, the explanation is…”they’re going to take a little blood in funny places which is why they make sure you don’t feel anything by giving you the white medicine.”

And then the tests are over and we wait.

On Monday we received the results of the scans…both are clean. Now we’re waiting for the bone marrow results which should be in at the end of the week. It looks like we have another 90-day window and while of course I’m happy…I’m also very cautious. We have five more of these “super test” weeks to get through before we can breath a little bit easier. One day at a time, one test at a time.

The super soft yellow blankie wasn’t returned even though messages were left about the importance of it with the cab driver. The driver owns the cab so we were hopeful he’d return the precious lost item knowing that it wasn’t going back to a depot. Liam keeps asking for his “soft, yellow blankie” and I keep delaying him by saying that we haven’t reached the cab driver yet. Every time we get in a cab he asks the driver if he has his blankie.

This week is round six of 3F8 antibody. The good news is there is pain which means the antibody is working. The bad news is there is pain which means Liam’s having a tough week. He misses his blankie and I’m beside myself for having left it behind.

When a friend made dinner for us to make our tough week a bit less difficult, I thought it was unnecessary. We can handle this…we don’t need someone to cook for us. After an almost five hour wait before treatment on Monday that didn’t see us home until 8 pm, I had never tasted a better meal.