A page of photos is currently under construction. I really don’t know what I’m doing when it comes to computers and programming, so please bear with me! I’m learning as I go.
As I posted earlier today, days are moment to moment. Lachlan slept all morning. When he was still asleep at lunch time I didn’t worry too much because he didn’t go to bed until midnight! He’s a night owl like his Mama. He also wakes several times through the night. But then it was one o’clock, two o’clock, three o’clock… still asleep. The last time he slept this late was Father’s Day; not many days before he entered ICU with seizures and respiratory distress. I had to run to the post office and left him at home with Cullen. It is a beautiful day. Beautiful. Warm but cool in the shade. Slight breeze. Picnic weather. As I drove down the road I looked up at the sky. The big puffy clouds against the bright blue sky. It made me think of God. A big smile crossed my face. Then, with no warning, I completely lost control of my mind. I was stopped at a light, staring at the sky, screaming, “WHERE ARE YOU!!!!????” over and over. In the back of my mind were images of lightening bolts and plagues coming down on me, but I couldn’t stop. Where are you God? Coming in the neighborhood I passed Cullen and the boys in his truck. Lachlan had woken and they were going for a ride. He was in a great mood, and wanted french fries. Mere minutes after my tirade my two boys were at the kitchen table dipping their fries into their milkshakes. And God appeared. Of course, it wasn’t long before Lachlan got down from the table screaming. The familiar look of ‘ick’ on his face. He vomited, and went back to bed. Moment to moment. The daily roller coaster.
Cake and icecream the night before surgery.
Back to the story of how we got here. The first operation. It was the morning of March 4, 2011. Up before the sun. We had stayed up late spending time with our little one. A very kind nurse, Katie, had managed to get us a birthday cake and candles for him. It was killing us that he never had his party…never blew out candles. If wishes were ever in order, it’s now. We carried our baby down to the O.R. prep room. Questions. Lots of questions. O.R. Nurse asked questions. Anesthesiologist asked the same questions. Someone else asked the same questions. When did he last eat? What medications is he taking? blah blah blah…. A nurse comes to take him. He is screaming. Clinging. Gut wrenching. Memories of the day he was taken for his open heart surgery. Silent prayers. God please watch over my baby. God please don’t let this be cancer. Please.
I felt surprisingly calm through most of the surgery. Then suddenly I started to panic. I felt like something terrible had happened. I couldn’t breathe. I had to know he was okay. I had to see him. There were so many loved ones there that day. We took up an entire section of the lobby. As we stood waiting and wondering I looked up to see Dr. Boydston coming through. He didn’t see me, but I could tell that he was looking for me and Cullen. He looked like the world had just landed on his shoulders. My fears were confirmed in his eyes. Something terrible had happened. With tears in his eyes he began, “Guys, it’s a tumor. It’s cancer.” He broke down crying and said, “He’s one of the cutest kids I’ve ever seen.” My legs became weak. I didn’t hear another word he said. What more did I need to hear? The words ‘kids’ and ‘cancer’ should never have to be uttered in the same conversation.
As Lachlan woke from anesthesia we were so thankful to God that he appeared to be himself. The surgery required dissection of his cerebellum. The possible repercussions of that were dire. Paralysis. Mutism. We have to thank God and Dr. Boydston for that. Along our journey we have met many who were not so fortunate. Our baby woke and spoke and smiled.
ICU, after surgery
The next day Oncologist, Dr. MacDonald, came to ICU to talk with us. Good news. Yes, it is cancer, but it is medulloblastoma which has an 80-85% cure rate. He felt very optimistic. There are a few genetic markers with medulloblastomas that you do not want. As long as he does not have those his chances are good. The tumor tissue is being studied and we will know that information in about seven to ten days.
He was in ICU for only two and a half days. He left the hospital five days after surgery, only to return early the next morning via the E.R. with a fever of 103.8. The next day he was taken for his second brain surgery. The wound had a massive infection and was re-opened and cleaned. The day after that I stepped out of the shower in the hospital room just in time to hear the nurse tell Cullen, “It’s MRSA.” The words “Oh My God!” flew from my mouth. My poor little one would be subjected to 21 days of extreme anti-biotics. And now our focus turned from cancer to something more immediate. If the infection got into his spinal fluid he could perish from meningitis or sepsis. To make matters worse, cerebral-spinal fluid was not being absorbed by his dura, the lining of the brain. He would need another surgery, tonight, to install a shunt to empty fluid from the brain to a collection bag. As Callum would say, ‘Seriously?’ Give me a minute. Two ‘brain surgeries,’ in two days, by two different doctors. We didn’t even get a chance to research these two doctors. I research cereal!
Even a shunt can't stop this smile!
We were given one day of mental rest before the next bomb was dropped. Monday, March 14th…. the diagnosis; large cell anaplastic. This was one of those ugly genetic markers we did not want. Our chance of survival took quite a nosedive. When the doctors left the room Cullen and I held each other and sobbed. The only other time I had seen Cullen cry that hard was when his friend Brian was taken in a car accident. Sorrow. It is defined by my American Heritage dictionary as something suffered ‘mentally.’ What word defines what is felt in the body? In the soul? For the first time in many many days, my mind was blank.
It is difficult for me to simply post ‘How Lachlan is doing today.’ I can begin, and before it’s posted he will have changed. One moment he is a happy two year old. The next moment he is laying his head down. It’s not clear if his head hurts, if he is nauseas, or simply tired. We ask, but he never really gives an answer. Maybe he just feels like doo doo. Understood. One moment he is eating and smiling. The next moment he is vomiting all of the calories he managed to get in for the day. He is now complaining about headaches. Mostly in the morning or after crying. One moment he wants you there by his side, tickling him or singing. In a split second he will decide it is time for you to be gone and will let you know it with no uncertainty. It is difficult to know how much of his behavior is medically induced, chemically induced, or just plain two year old! We all hang on the periphery, waiting to be invited into Lachlan’s world. Every moment that he allows you in is sweet indeed.
The day of Lachlan’s second birthday, February 17, 2011, he woke with fever. He was battling a virus that was passed through our house. A nasty one. Just two days earlier he was on his bike charging through the neighborhood….Look out world! That morning we did our usual routine….I got him out of bed, held and rocked him for a while singing happy birthday to him, then he wanted down to begin his daily rampage of the house. I sat him down, he slid off the big chair as always, and when his legs touched the floor he slowly went all the way down to his bottom. When I picked him up I noticed that his head was tilted slightly to the right. I asked him if he could straighten his head and he seemed very frustrated. Of course my thought was that it was the fever. I called his doctor and they had a three hour wait, so I took him to Scottish Rite Children’s Hospital ER. After a long wait we were finally seen by a female doctor. I thought they would give us an antibiotic or something, and send us home. She looked him over, ordered some tests, and admitted us to the hospital. What? We’re staying? She said that sometimes a virus can present in the brain. An MRI in the morning would let us know. She was clinical, concise, a busy doctor; but, when she left the room she gave me a strange smile. She had seen this before. She knew.
The MRI was performed the next morning. Early. We were scheduled for 1 and 1/2 hours. It took 2 and 1/2 hours. The nurses were all making excuses about why he wasn’t out yet. My intuition knew it wasn’t good. Hours later, back in the room, we waited for an answer. There were several of us packed into his tiny little hospital room that day. I was holding him when the messenger arrived. I still don’t know who she was. A junior doctor or physician assistant? As we all held our breath, she began; blah blah blah ….”well, we didn’t find a virus. But we did find a tumor.” blah blah blah. She was so matter-of-fact about it that it seemed like a really bad joke. I was waiting for her to laugh and say ‘Just kidding! He’s fine. Take him home.’ But nothing came. Silence. The world stopped. My hearing muffled. I felt dizzy. My vision yellowed. I looked down at my baby in my arms. What? I think I looked at my sister and asked her what the messenger had just said. Did she just tell me that my baby has a brain tumor?!?
Not long after, little bitty doctor with a southern accent, Dr. Boydston, showed us Lachlan’s scan. He pointed out the tumor and said we had caught it early. It didn’t appear to be on the brainstem, which was great news. He would be removing it in the morning. Excuse me? You are going to perform brain surgery on my son in the morning? Wait a minute. Can I catch my breath? He ordered a CT Scan to see if it the tumor had any calcification and to help him map out a plan of attack, surgically. After the scan he came in the room with a huge smile and said, “This might change things folks.” It appeared that the ‘tumor’ was bleeding which led him to believe that it was likely not a tumor but rather a cavernous angioma or arterio-venous malformation. These options would still require surgery, but were not as nasty as the possibilities that come with a tumor. We were sent home on a steroid and told to come back in one week for another scan. He didn’t want to operate with it actively bleeding. After one week they decided to wait another week to do the scan. I questioned profusely. They felt safe waiting. The next week we went back for another MRI. We didn’t wait long when Dr. Boydston came in looking rather distressed. “It has grown,” he said, “and we’re gonna operate in the morning.”
I was looking through photos in remembrance of 9/11 when I inadvertently came across a shot a poor soul who jumped from the building that day. I abhor those shots, and feel that anyone who publishes them should be boycotted. I walked away from the computer in tears. Started folding some laundry. Could not get the image out of my thoughts. Those innocent people. Faced with two choices….burn or jump. Their fate was sealed. Their only choice was how to meet it. Ten years ago I saw those photos and felt a deep sadness and sympathy for them. Today, strangely, I feel almost EMpathy. I feel as if I have taken my sweet precious baby boy and stepped out of a very tall window. Only we’re falling in slow motion. I think of all the thoughts that passed through the minds of those falling angels that day. Only a few brief moments. What and Who did they think of? As I fall with my son, I look him in the eyes and think of his first day of kindergarten. Will he look back at me and wave or just charge in? I think of the priceless piece of paper where he first writes ‘Lachlan.’ I think of he and Callum giggling in the bath tub, in the car, at the dinner table. I think of them scheming brotherly plots to ‘sneak out’ after I go to bed. I think of his first girlfriend. I think of buying his first pair of football cleats. I think of all the questions he might ask me while we drive down the road or cook dinner. I think of all the school plays and concerts. I think of hearing his footsteps on our wooden floors. I think of running wild with cousins. I think of brothers reminiscing around the Thanksgiving table thirty years from now, telling stories of things they did that I never knew about. I think of his high school graduation. College graduation. First house. Seeing him marry the girl of his dreams. Watching him hold his own sweet precious baby boy. I think of every time he has said ‘I wuv you mommeee.’ I think of how his curls used to feel against my cheek and how soft his beautiful bald head is. I think of how he smells. I think of his larger-than-life laugh…
If only I could jump with him. If only I could break his fall so that he could walk away. If only.
How do I begin? How? How do I begin? How do I write about my beautiful son? How do I do him justice? There are no words to pave the mental path…the emotional path…the physical path. It’s like when you are in a long conversation or debate with someone and it goes on & on & on. At some point you just throw up your hands and say ‘No more.’ When you reach that point of exhaustion you can stare at a blank wall. You are a blank wall. For a few moments, a robot. A shell whose soul has left briefly to recharge. I am a blank wall. A robot. I have ridden the most extreme roller coaster since February and it has charged my senses, my emotions, and my body so that I am numb. The only thing left is an ache. My soul aches. ‘No more.’
Tomorrow's Kisses 