One of my favorite authors is Maya Angelou. Her words penetrate my soul. I saw a quote from her that resonated as we’re about to embark on two additional rounds of high-dose chemo to kill the bastards. (I’ve toned down the vernacular used to describe cancer cells, although it still rings in my head.) The quote is short but simple.
"Nothing will work unless you do. "
So, we are going to do.
The final pathology report came in late on Wednesday. It was awful to read Dr. Kushner’s classic short and to-the-point e-mail about the report. I believe it was something like, “Final pathology report shows (+) neuroblastoma cells - relapse.” And then there were a few niceties to temper the tone of the e-mail, but the initial shock of reading those words crushed my spirit. So many pictures came crashing into my head of things we’ve endured while going through the regimen of chemo as well as a searing pain thinking about what Liam will face…once again. The mental energy it takes to keep your spirit up and entertain an incredibly inquisitive little big boy is not physically but mentally exhausting. I’ve hung up my Sigourney Weaver persona from Alien battling an extraterrestrial creature threatening a child. I don’t want to wear it again, in fact I’m not even sure it fits me, but with the confirmation of the news we already pretty much knew…I accepted that I needed to put the suit back on and get to work. But I gave myself permission to have one really good cry before donning the muscle t-shirt.
During a long but positive meeting with Dr. Kushner on Thursday, we discussed a lot and even laughed a bit. I feel comfortable enough with him to tell him how warped I think he is when he describes the powerful chemotherapy agents Liam will be receiving as “no big deal.” I can only imagine what he’s like at a cocktail party. There were no tears during the meeting and in the end I think we wound up giving Dr. Kushner, Ester and the team a pep talk. They clearly feel awful for us having to deal with this. But we’re all dedicated to getting Liam where he needs to be – CURED – and we’re ready to do it. And, we’re all incredibly grateful that this tiny, tiny little thing that is smaller than ½ of the nail on my little finger was caught when it was…and that it hasn’t grown since April. One thing we discussed was working as hard as we can to get Liam to the place he needs to be so he can go to school on the first day. It’s going to be tough, but there’s a chance we can meet the September 10th deadline. The next question, though, is if I should hold back on him going to school since he won’t have hair and likely no eyebrows and eyelashes. Will his classmates notice? Will they be mean or will they be too young to notice or know the hurtful words older children have in their vocabulary and spirit? Will Liam even care? He seems to roll with everything and maybe he’ll roll with this, but he is older. Do I need to give him more of an explanation this time? Do I go with the, “The doctors found something in your blood that they wanted to get rid of” line but this time add an explanation about why his hair is gone, something he didn’t seem to even notice last time? I’m trying to remember how long it took for his hair to grow back the first time. I think it was close to three months, but I just don’t remember. I know he had hair in late September when we limped to the beach house Liam refers to as “his beach house” last year, but how long before did he pass for having a head of hair? Maybe I just need to get him a whole lot of hats, especially more of the “Life is Good” hats he treasures that a Liam supporter sent. And then there’s the uncomfortableness of having to explain Liam’s situation to a new group of people. Which ones will be so shocked they can’t say anything? Which ones will be cool enough with it that they can talk to me? This year we have double duty with Ella starting school as well. The parents in her class will need to know about Liam’s situation so that their children don’t bring anything to school that Ella could pick up that, in turn, Liam could pick up. OK. OK. One day at a time…let’s not think that far ahead.
The game plan is two rounds of high-dose chemo in a combination his body hasn’t seen before. His body hasn’t received chemo in nearly 15 months which, according to Dr. Kushner, is a good thing because it will deliver more of a potent punch. Between the two rounds of chemo some radiation is being planned. Kidneys and radiation don’t do well, but given that the area around his kidney is where the original tumor site was and where cancer cells were once again discovered, it looks like we need to go back to that area again. The benefits outweigh the risks in the high-stakes game of giving Liam a full and fulfilling life.
And how is Liam? Amazing. He had a play date with his gal pal Dylan on Wednesday and Thursday. He played at Appleseeds with Ella. He went to science class and learned about the La Brea tar pits and talked and talked about dinosaur bones. He took a music class at Appleseeds and, I heard, danced and danced and danced. Almost hour-by-hour you could see him regaining his strength to pre-surgery levels. And on Thursday, he ate…which is a very good thing. We’re trying to cram in as much as we can knowing that beginning Monday we start our quarantine period…the one where someone sneezing across the street brings sheer panic as you play a cut-throat game of “Frogger” trying to avoid germs as you hop from lily pad to lily pad.
We came back to New Jersey on Thursday night to give Liam and Ella three days of fun at the “country home.” At 8:20 this morning, they were both outside playing and doing what every child should be doing during summer vacation…discovering. And they kept discovering until we finally put them to bed at 10:30 p.m. after lying in a tent, looking at stars and listening to frogs. Today when I was putting Liam for a nap, he asked for a Leo story. Normally Daddy is the Leo story person since it’s his special activity that he does with Liam, but there’s one Leo story that he asks me to tell him – Leo Goes to School. I’m sure it’s because I’m the one who primarily takes Liam to school. So, I told him the story of Leo going to school which essentially is a detailed, step-by-step dissertation of what Liam’s morning routine. If I forget something, Liam reminds me to include it. He wants to hear every detail from what store windows he likes to look at in the morning to what he Leo wears to school. After today’s story, he asked why he hasn’t been going to school. I explained that it’s summer vacation and that no one is in school right now and even Jean isn’t at school, something he found incredibly fascinating. (I think he thinks she lives there.) We talked about how he’ll have a different teacher in the fall and there will be different kids in his class, new friends to make. And then he turned to me and said, “I miss my friends.” And tonight when we were in the screen house at 9 p.m. doing craft projects with a brave little boy who was not tired (Ella was inside taking a bath with Grandma after peeing on her leg when she was outside), he looked at us and again said, “I miss my friends.” And when he asked who he missed, he named the first two children he met at school. Liam, my dear sweet prince, we’re doing everything we can to get you back to your friends at school. Everything we can.
