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Monday, May 21, 2007

Monday May 21st Update

As of Friday, Liam is neutropenic so we're back in high-alert mode trying to avoid germs lurking behind every corner and sneeze. It's true that chemo is feeling like an old friend, but it's even more accurate to say that chemo is feeling just old. We're over the stress and strain related to it. We're over the no-control-over-our-life that the chemical cocktail sessions bring. We're tired of knowing that we'll be back "in patient" but having no idea when. And, now that we think about it, we're just tired. But knowing that 3F8 treatment, the mouse antibody that causes pain so intense that it can't be fully tempered with the most powerful pain medication, is the next phase of treatment after chemo isn't exactly the pot of gold at the end of the chemo rainbow we were hoping for. But then again I suppose it is…after all it's only available at MSKCC and is extremely effective in searching out the remaining neuroblastoma cells and rendering them useless. And to know that 3F8s is just around the corner means we've come a long way. He's already received three transfusions this round of chemo, all of which have been direct-to-donor. The feelings you have as a parent knowing that the vital blood or platelets your child is receiving were donated by someone who wanted him to have them is incredibly powerful. When Liam is receiving the transfusions, I can't help but stare at the bag in amazement and gratitude.

The past week has been a fairly low week emotionally. It has been one that has tested our endurance and left all of us, at times, feeling completely spent. Most of the week, including his birthday, Liam was in his indifferent mode. He would want to have Caillou on but would turn his back towards the TV; he would want to be held in his special fetal position but wouldn't want you to talk to him; he would want you to bring him food but wouldn't want to eat it; he would want you to change his diaper but wouldn't want you to touch him; he would want to go to the fire station but wouldn't want to get out of his stroller or talk; he would want to see Ella but wouldn't want her to look at him; he would want chocolate milk but only if it was heated to the perfect temperature and if it became a degree too cool, would cry until it was reheated to the ideal temperature. The most challenging thing for us has been trying to decipher what he's saying, often through his pacifier. If we can't figure out what he's saying by his third attempt, he becomes a puddle of tears which leaves us feeling thoroughly useless as parents. We try and figure out what he's saying by naming all the items that might be in his line of sight…and when we get really desperate just name every item we can think of. This week he has pretty much wanted one thing…to be held when he's awake or asleep. There are times this week I've considered toting Liam along in a Baby Bjorn carrier like I did when he was an infant. He's lost so much weight that at 29 pounds, he'd meet the 35-pound weight restriction. Since he has been home from his last in-patient stay, we've been focused on coddling him and trying to bring him back to the land of the healthy. If he wants to go to the fire station…we're at the fire station. If he wants to go to the police station, we're at the police station. If he wants to watch the same episode of Caillou for the 75th time, we're happy to oblige. If he wants both of his feet rubbed simultaneously, we're rubbing them. We'll do anything to erase the memories of his stay and get him back to where he was pre-hospital stay. We're trying to keep his routine as normal as possible to help reground him.

Last Saturday Liam was still hooked up to chemo – the red one that looks like cherry Kool-aid. We spent the morning talking about his birthday and trying to get him excited, but he wasn't biting. He wanted to go to the police station, but when we arrived the door that the big Harley Davidson motorcycles are kept behind was closed. He wanted to go to the fire station, but once we got there he clammed up and wouldn't get out of his stroller. It was really painful to see him so down in the place that gives him so much happiness. To see Liam not want to walk around and talk to "his guys" was not necessarily surprising but still disheartening. OK – So I know it was only eight days post-surgery and he was still going through another round of chemo, but I'll admit I had hoped I would see a huge smile on his face when he saw the fire truck. Instead, he sat in his stroller looking indifferent. What amazed me is that without telling the firemen what Liam's state of mind was, they picked up on it and took over for him. They took him through the equipment he's already seen countless times and explained what each thing does without expecting him to participate, something I'm sure wasn't necessarily comfortable. They joined us in trying to coax him back into the land of the healthy. Liam got to see the ladder truck raise its ladder for the first time…something that normally would have solicited squeals of delight…but this day was met with a few reserved smiles. Every once in a while in a very soft voice he would say, "what's that?" which is all we needed to know he was there. He got to see a fire hydrant being opened for the first time which he enjoyed enough to ask to see another one being opened, which, thank goodness, the fireman was willing to do for him. He smiled when the car that was illegally parked near the fire hydrant got wet. The only time I saw a true smile was when he got to press the pedal from the passenger side of the fire truck that honks the loud horn. The noise made Liam whip his head around to find my eyes to show me his excitement. And then, as soon as the noise was gone, so was Liam's energy. After a several hour visit to Urgent Care to get disconnected from chemo and reconnected to fluids, we limped back home to New Jersey with a birthday cake that one of Liam's elves was kind enough to make and party goods in tow.

When we were about ½ mile from our home, Liam asked us to put his sneakers back on. When we pulled into the driveway, he immediately wanted out of the car and walked…on his own without holding hands...to the back of the house, down a flight of stairs, stopped at the large stone that holds his collection of glass beads that he calls his "treasures", around a large flower bed, down a steep hill to his swing set, up the rope ladder to the fort, and then announced he wanted to go down the slide. Unfortunately he was connected to fluids which come with a backpack that contains a pump and IV bag that weighs about 10 pounds…so instead Larry had to take Liam down the slide on his lap. To see Liam's immediate positive response to being home made the effort to go to New Jersey more than worth it. As thrilled as we were to see him walking and being more like himself, his burst of energy made him want to take a long nap. That's pretty much the way the whole week went…a burst of energy and then a long rest.

Liam's birthday was not quite the day we hoped it would be. He had a rough night leading up to his big day and was even more sensitive and tired on Sunday. The majority of the day was spent holding Liam or rubbing his feet while he convalesced. It's somewhat ironic that the majority of Mother's Day was spent holding my sweet guy who made me a mother thirty-six months ago to the day. The only birthday activities we wound up doing were unwrapping a few presents (but not all because he got too tired) and lighting the candles on his cake to sing to him. He enjoyed blowing out the three candles so much that he wanted to do it over and over again, something Larry and I were delighted to have him do knowing that it was good physical therapy for his lungs post-surgery. When we carried the cake with candles lit into the room he was resting and started singing "Happy Birthday," he got very silly and bashful and buried his head into his elephant pillow. We've decided a big party is in order for him after his immune system is not compromised because of chemotherapy.

A few things to share about the week.

- The continued support from so many people, many of whom we've not had the pleasure of meeting but whom we'd now do anything for, continues to simply astound us. It's a jolt of humility and strength to know that so many people are pulling for us and it truly makes us feel like we're not alone. How can one explain what it's like to receive a card or gift from a perfect stranger because that person cared enough about us to want to reach out? One of my concerns is that people who have been gracious enough to become a part of our family will not understand how much each and every gesture means to us. We wouldn't be where we are today without the continued outpouring of support. As I dress my children in an outfit that came from someone else, read a book given by an avid reader, play with a toy that someone thought would give Liam or Ella pleasure, open a card that has well wishes, wrap a shawl around my shoulders that was knitted specifically for me by a gracious stranger, eat food lovingly prepared for us, I give thanks and gain strength. This is an incredibly stressful and draining process and the support we've been receiving is like a shoulder to lean on.

- The day of Liam's first surgery date there was a blood drive on his behalf arranged by Sgt. O'Grady. Liam was already in-patient and I was with him at the hospital, but as Larry was on his way to see his he told me there was a line of people waiting to donate. Larry showed me a few pictures he took of the line of people which was longer than the picture could capture. Sgt. O'Grady has been in our shoes and knows what this road is like. He clearly was doing what he knew was best for Liam – the incredible gift of blood. We can't wait until we can do the same for someone else.

- We're no longer the "newbies" on the pediatric floor. There are newer diagnoses. On Friday, Liam decided he wanted to see Reece in the POU unit. He was so happy to see her he visited her three times. As we were going in during our last visit, Liam saw her and stretched out his hands to greet her. (Baby steps – he's coming out of his shell – but it's taking baby steps.) As we were leaving, Reece told a dad coming out of one of the POU rooms who was pushing a stroller with child who didn't look much older than Liam…and with a full head of hair…that Liam didn't lose all his hair. The dad eagerly looked at Liam to see what cancer looks like which was a really weird feeling. We're no longer the new ones on the floor. We actually have experience to share with people which is so hard to believe.

- We take great comfort seeing our "classmates" when we're at the hospital. It's indescribably reassuring. We greet each other as old friends and there is nothing in the world that Larry and I wouldn't do for the families we've met along the journey. My fervent hope is that they will continue to be a part of our lives to celebrate milestones of birthdays, graduations, and weddings as they happen. I hope that cancer isn't something that throws us together but then leaves as the cancer cells retreat.

- Faith is what gets us through the days and nights, but receiving signs is always nice. Our signs continue to be left for us by cartoon characters. Caillou's friend lives on the 17th floor of a high rise building. Caillou's house number is 17. Liam now knows the number 17 from seeing it on Caillou's house and the elevator of our "city home." Guess who else lives on the 17th floor? Liam's new close friend…Curious George. At some point this week after watching the movie a few dozen times, I caught that George and the man with the yellow hat live on the 17th floor. To make absolutely sure what I was hearing was true, I scanned the DVD back and watched it again just to make sure. This is one of those things you just don't question but go with.