Dealing with roadblocks and changes

Server is down!

Somewhere in a dark room, the buzzing of a fan suddenly stops. A blinking red icon appears on the dashboard of a server administrator monitoring thousands of servers. It’s all in a day’s work. The server admin, quickly gets paged and the downed server is escalated to the protocol needed to get it back in operation. Somewhere, someone is working on a server that quite possibly impacts the course of our daughter’s visit at the hospital.

My wife briefly mentioned the worst week we’ve had since Samar’s road to recovery began in yesterdays post. Let me back up a bit and detail what she alluded to. Last Friday, we were scheduled for procedures (PET and CT Scans) to see how Samar’s body has been fighting cancer. The scans show overall metabolic activity including that of the cancer. We are able to compare the results from the the first scans, and get a general idea of how effective the first couple blocks of chemotherapy have been.

Procedure days are a pretty big deal. Dealing with a toddler who is fasting prior to a procedure is a pretty difficult undertaking, but something needed for the the it to be safe and successful. I receive a call the night before the procedure from a scheduler at the hospital. The scheduler, explicitly said and reminded me that she was not to eat solid food past 12AM. She can not drink milk after 4AM. And she can’t have clear liquids after 8AM. She also explained what she meant by clear liquids allowed: Pedialyte, Apple Juice, Gatorade and water. These are the instructions given anytime she is put under anesthesia, also known as NPO, a medical term for “Samar’s gonna be HANGRY!”

The next morning I woke up, preparing Samar’s last few sips of clear liquid. I fill her cup with apple juice, understanding full well, this will be the only thing she will have pretty much all day. It’s a busy morning and the house is a buzz. Anna takes her to the hospital, and I follow suit, after dropping off her brothers at school and daycare.

When I arrive at the hospital, I see an active Samar standing on an exam room table. Anna  looks at me and tells me she’s been asking for “F-O-O-D” and is on the verge of having a break down. I do my best to distract her. We wait in the exam room for the next 45 minutes. A nurse comes in and explains that Samar’s blood sugar was too high for the PET scan to be conclusive, so they called it off and decided to reschedule the exam the following week. I was livid. I turn to the nurse and ask, “Why is her blood sugar so high?”

The nurse replied, “Well, sir, she had apple juice this morning. ”

I quipped, “Yeah, and…? I was specifically told no clear liquids after 8AM. She had the cup of apple juice before 8.”

The nurse looked anxious, “But sir, she’s not supposed to have apple juice.”

I explained the conversation I had with the scheduler the night before. We were misinformed and we were told that any sugar before a PET could show signs of activity that would be inconclusive. The nurse said she would talk to the scheduler and correct the situation so it wouldn’t happen in the future. That’s all well and good, but the bottom line, they would have to reschedule her PET till the following week.

For all intents and purposes the mishap gave us a couple extra days at home, and some time for all of us to be together for some home fireworks and BBQ. Samar enjoyed the flares and sparkles, but feared the loud booms. She watched from the patio window.

Samar watches fireworks

The next day Samar had a follow up appointment on Tuesday with her out patient oncology team. Typically it’s a blood draw and a check-up to see how her blood counts are doing. We were told that her platelet and ANC (white blood cell count) were pretty low. In order for her to begin the next block of chemo, her numbers would need to recover. That means it’s a wait and see game, till we know our next steps.

That Tuesday evening, we enjoy yet another day at home. After a full day at the hospital with her check ups, we enjoy a quiet dinner with a little playtime in the backyard. Big brother and sister are at it again, as I hear yelling and screaming while fighting over a scooter. I ask big brother to give the scooter to her sister. He gives in with bitter resentment. I do the parenting thing, and talk to him telling him he needs to provide a little more patience. I also try my best to talk to Samar, but she is wincing in pain, holding her elbow. “Owie,” she says. I take a look but there are not cuts or bruises. As we continue with the evening, I see her use her left arm more than her right. Obviously something is wrong, so we call the oncology doctor, and she says we should take her to the ER.

Another mishap, this one could have been avoided, however another trip to the ER, making two trips in one day. This time for a toddler incident, not a pediatric cancer case. We wait and we wait, and we wait in a crowded emergency room. Samar’s name is finally called, and we are given a room in the back. She’s examined and we wait a bit more. The ER doctor comes in and tells us, she has a case of nursemaid’s elbow, something pretty common in toddlers from 1 to 4. It’s when a ligament pops over the elbow to the other side. Somehow, it popped itself back in. 4 hours laters we head home, and a tired and sleepy Samar is now NPO for her rescheduled PET the next morning.

Wednesday arrives and a bit of anxiety hovers over our morning routine. “Scan-xiety” exists when we wait for the results, trying our best to hold our fears at bay and keeping our minds in the present rather than outcomes.

We head to the hospital. As soon as we arrive there is a buzz and angst for the staff in the waiting room. The hospital’s servers are down. The main system which provides the medical information and data for all the hospital’s patients has been offline for several hours. Everything is communicated via pen to paper. We think nothing of it. We walk through the extra steps checking Samar in for her procedure. Everything is delayed, however the procedure still tales place. We leave Samar in radiology. The procedure takes a couple of hours. We meet in Samar in post-op/recovery. She’s a bit groggy and hungry. We were told by the nurse that we need to speak with the doctor regarding her Hickman and the lines to her port.

Samar waking up from anesthesia

We wait patiently for the doctor to arrive. She greets us and prefaces our conversation that everything went well during the scan. However, during the procedure, one of the lumens or her line ruptured and leaked. The technician thought Samar had a special powered Hickman, which would allow them to push the contrast through her line. The technician made a mistake. The pressure from the contrast made the line burst. We need to consult the oncology team for next steps.

What started as a simple routine snowballed into a couple more procedures. Samar’s port and line would need to be removed as a precaution in case there was any bacteria that could start an infection. Installing a new line in the chest port, could also start an infection, so the doctors decided that they install a PICC line in her arm, as she receives precautionary antibiotics the next few days as Samar’s white blood cell count remain low. This means she can’t stay at home till her next block of chemo. Our summer at home concludes because of a technical error, out of our control.

I can’t help but think that if a server in some dark room were operating, the technician during the PET procedure would have known that Samar had a non-powered Hickman. He could have read details from her medical records rather than making a guess at the table. Now the simplified procedure has become a number of precautionary measures and procedures, ending our time together at home.

I list this story out in detail to share some of the things that sway our journey to remission. There are things beyond our control as we try our best to ride the roller coaster adjusting course and preparing for the swift turns, sudden drops and steep climbs. There’s fear, frustration and anger. In the end it’s just wasted effort and emotion. When we let go of the emotion and leave it in God’s hands, we trust that things happened for a reason, and it’s all a part of His plan.

Recovering from her procedures, back to smiles

We are reminded by the medical staff that every cancer patient’s journey is different. Expectations, problems and changes will arise. How you choose to handle your emotions or how you choose to react to the things you can’t control, are the only ways you can help persevere and adjust to what this journey throws at you. In the end, Samar is doing well and is safe at the hospital. Her counts are up and she is recovering. That’s all we should focus on. Being able to draw the good from the bad, focus on the positive and not the negative, will let you pull through from the things you can’t control.

 

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