Friday the 13th of August marked three weeks since surgery. The surgery itself was fine...as far as surgery goes. Dr. LaQuaglia once again literally saved our son's life and has kept him in the game. What that man does as a matter of routine business on a daily basis goes beyond comprehension. It turned out that the lymph node had sprouted tentacles that were branching out from it and ouching his esophagus, pulmonary artery (or was it the vena cava?) and lung. I don't even want to think about what it was ready to do. It was one of Liam's shorter surgeries, but after a too-long wait for a surgery update that left us anxious and nervous and without the benefit of a waiting room filled with friends to keep us preoccupied like we have had for Liam's other surgeries, it felt like one of the longest.
The past three weeks have been very long weeks filled with lots of annoying "little" things that individually can all be explained but collectively make for tense times. The roller coaster we normally ride has been even more intense. We had issues while still in patient after surgery that had me trying to comfort a little boy who was beside himself with anxiety while simultaneously and vigorously explaining to nurses how we were going to deal with a blocked port...an episode that started at 3 a.m. and didn't resolve itself until well after 5 a.m. They were ready to give up after a lackluster attempt and put Liam through something very painful. I was determined that they were going to work at it like I have seen other nurses work at a blocked port until they resolve the issue. In the end, it unblocked without needing to make Liam endure more pain.
After surgery on Friday afternoon, he was up and shuffling along, completely naked except for shoes, at 10 a.m. on Saturday morning. He would painfully shuffle to a fish tank filled with lots of colorful fish, glance up, and beg to shuffle back to the room. While we were still in patient after surgery, our sweet prince endured having his back pounded on every two hours through the night for the first two nights after surgery, including directly over his brand new 6" incision, to loosen the build up of fluid in one of his lungs that was heading towards pneumonia. He would yelp and cry in pain during the procedure while giving me a bear hug...all while listening to "his friend" Jack Johnson sing to him for comfort. He never once complained.
For 13 days post-surgery, he coughed and coughed and coughed nonstop trying to open up his lung and was finally treated with an antibiotic specifically for bacterial pneumonia, even though he didn't have any fever which is the tell-tale sign of a bacterial infection. The coughing was so intense it would make him throw up, cause his stomach to be in a constant state of discomfort and to be exhausted from the effort. It was vicious cycle that finally started to resolve itself around day 17.
Since he was returned to us from surgery, it feels like every time he starts to feel better he's hit with something that sets him back. It doesn't help that his recovery has involved more treatment. In the past three weeks he has gone through two rounds of Rituxan (the first was six days post-surgery), a different antibody he hasn't received before, which is a relatively "easy" experience although one that people have died while receiving so it is monitored very closely and requires a very long day (11 hours) at the hospital. He has also had a round of Irino/Temo low dose chemo between the rounds of Rituxan. He has had no appetite, although in the past 72 hours we have seen it coming back. ("You want cookies for breakfast? Absolutely! Eat as many as you want, honey! Can I get you some ice cream?") (Yes, the insanity of the situation never loses itself on us.) He has lost the weight he worked so hard to put on the weeks before surgery, something that is frustrating to him and us. On top of the pneumonia-like symptoms, he was hit out of the blue with the most awful stomach virus symptoms exactly one week after surgery that had him completely down for the count but increased his white blood cell count from a normal range of 4 - 11 to 21.5. When we got the CBC results with that white blood cell count, everyone...and I mean everyone...on his medical team was a bit wigged out and decided to share that wigged out feeling with me in front of Liam which left my knees ready to buckle as I tried to nonchalantly take in the news while acting like they were telling me the score of baseball game I was vaguely interested in. "He has two key key tumor markers that are incredibly elevated!" I was even asked, more than once, if I was giving him GCSF shots to increase his white blood cell count. ("Oh, yeah, you caught me...I have been giving him the injections he despises almost as much as he despises Temodar capsules just for the fun of it!) Not surprising to us because we knew how sick he was from the rogue virus-like symptoms that plagued him, his white blood count has since gone back to normal. In the 21 days since surgery, he has gone through radiation set up...yet again but this time with Ella by his side...that included another tattoo to help line up the radiation beams in exactly the right spot. This time to help ease his high anxiety, I told him I'd get a tattoo first to show him how it didn't hurt. The technician administering the tattoos thought I was joking. I wasn't. I let Liam pick out the place on my body he wanted me to get the tattoo. He chose a spot on my right forearm to match a freckle on his right forearm. He received the first of 10 radiation treatment to the area where the lymph node was. During the treatment course, he's going to get some more radiation to his scapula to go after it again.
It has been a lot but we're not complaining.
Throughout it all, we have been living and loving and loving living. We have been to the movies (Cats & Dogs isn't so great but the kids loved it), we have stumbled upon an amazing free concert of music from around the world at Lincoln Center that Liam and Ella loved, we have been enjoying the peace and quiet of our home in New Jersey, and with Ella's help ("Come on buddy, you can do it") have been prodding Liam along to get back to the Liam we all very much want and need to see...the little boy with boundless energy and enthusiasm. He's getting there. Slowly.
Next Friday is August 20th. It's my birthday. It's the fourth week after Liam's fourth surgery and the fourth birthday I'm marking (noting, not celebrating) since this journey began. Next Friday, August 20th, Liam has a CT scan scheduled. I have two favors to ask. 1. Please pray/believe/hope/chant/meditate that the CT shows what we all want and need for it to show...nothing. 2. Please have a bake sale this fall to support pediatric cancer research. Our incredibly supportive supporters at Glad just announced a bake sale match period from September to December. We want to take full advantage of this match. We have to...Liam and his friends are counting on it.
It has been a hard few weeks but we have never lost our faith...and he has never lost the essence of who he is...a sweet little boy who wants to do nothing more than to be a little boy and big brother.
In the past few days, Liam has been planning a party he wants to have this fall. He's calling it a fun party for everyone to come and have fun. While receiving antibodies and chemo, he has slowly and diligently written out invitations, come up with a schedule for the party, and deliberated on every aspect of the party. We will keep planning the party because that's what we should all do...look at life as one big party to enjoy and celebrate.
