December 9, 2013. It is nearly Christmas and as I sit near the Christmas tree, I am trying to comprehend all we have gone through since the beginning of this journey. It has been fourteen months since Christopher’s diagnosis. It is a good thing to say that it has been a quiet few months! Busy yet uneventful.
November 4, Christopher had his second appointment with Dr. Bottoms, in Asheville, N.C. His grandparents were able to go visit for a weekend and take him for his appointment. Scheduled was blood work for counts, a Vincristine push, and a Lumbar Puncture. It would be the first time this doctor had done an LP on Christopher. Not knowing how it would go, Christopher decided to have the grandparents stay in the waiting room. If it was going to hurt, he didn’t want them to have to see that. I am happy to report that it went well! After the procedure Christopher spent 45 minutes on his back and visiting with the GP’s. After leaving the onoclogist’s office, they returned to Johnson City, stopped to fill scripts, then delivered the boy to his dorm. Having my parents there to take the boy to his appointment was great for peace of mind.
The boy arrived home for Thanksgiving looking fantastic! It filled me with happiness to put my arms around him for a hug and feel some muscle, not just skin and bones! His color is great (a friend pointed out “He’s not gray anymore!), his energy level is returning, and his hair is longer than Scott’s. The boy has always had a TON of thick hair. It’s come back in just as thick, a lot darker and his beard is very, very red.
Thanksgiving Day ended up being very non traditional. Rory ended up running a high fever. We whisked him upstairs away from Christopher as soon as we realized he was sick and proceeded to sanitize every inch of the house. My heart dropped with the realization that the boys had spent a lot of time together, in close proximity, before we knew Rory was sick. Living with the knowledge that, while his counts have been great, Christopher’s immune system doesn’t function normally or as strongly as ours does is a heart wrenching way to live as parents.
Thanksgiving dinner was spent a house divided! Scott and Rory ate upstairs, while Christopher and I ate and watched a movie in the living room. Poor Max didn’t know which boy to be with. While we were dealing with keeping our children apart, we were thankful for the knowledge that if Christopher were to catch anything from Rory, he was home with his family, main doctor and hospital.
Christopher, so far, is fine and virus free. We spoke to Rory’s pediatrician as well as Dr. Kothari and both agreed that we keep the boys apart until the rash Rory had, as a result of the high fever, was gone. This seems to have worked!
The boy stayed home the week following Thanksgiving for another week of Nelarabine. To say the staff was excited to see Christopher was an understatement. What a homecoming!! We really felt the love! Hugs all around, people coming out of offices to see him, nurses asking to have him for a patient….it was really great. A few people had to do double takes when they saw him as they’d never seen him with hair before.
When you arrive at the hospital, first thing you do is stop at the desk in the lobby. You’re given a sticker designating where you’re going in the hospital. From there you head upstairs to the clinic. Entering the clinic, you check in, give insurance cards if it’s a new month, receive your patient sticker, then wait for your name to be called. This gave us a chance to visit and catch up with the girls at the front desk.
Christopher’s name was called and we then went to have his vitals checked, along with height and weight. At this point, Dr Kothari was standing nearby, telling us about his beard growing adventures. Let’s just say, his boss asked him if he was planning to go through any airports in the near future because if so, he could plan on being asked a few questions 😉
We proceed to an exam room where we spend the next 45 minutes visiting with Dr. Kothari. Our friend Karen, one of the clinical nursing directors, also came back to visit. It was a great visit with lots of laughing. You can tell this is a staff that respects and enjoys each other. A quick exam, a few questions, and we were sent to the nurse visit. The nurses are the ones that access, draw labs, and administer chemo.
I was really curious about the boys ANC, knowing he’d been around Rory. I was relieved that it was above 2,000. That number was higher than it had been in months and meant that he literally had a fighting chance against the virus Rory had.
We had a few nurses tell is that they were fighting over who got to have Christopher as their patient the week he was there. I’m sure having a quiet, compliant, sweet, and handsome (I’m allowed to say that, I’m the mom) patient is a welcome change over sad, scared, crying little ones. The nurses are really wonderful when dealing with the little patients and helping them overcome their fears of being accessed. I know these nurses love their job. It must be nice though, to know one of your patients is laid back and easy going! As a mother it’s nice to know that your child is a favorite patient!
Nelarbine is the study drug Christopher receives as part of the clinical trial in which he is taking part. He seemed to tolerate it as well as he did in September. Still, it is hard to tell if it is the Nelarabine that exhausts him, the lack of sleep from a long weekend of writing a paper on minimal sleep prior to coming home, or both.
We are given discharge papers every time we are at clinic. I noticed today that the side effects for Nelarbine are “diarrhea, constipation, lower blood counts, fever, swelling, nausea/vomiting, change in ability to think clearly, dizziness, drowsiness, blurred vision.” I wonder if Christopher is aware of the “change in ability to think clearly” as he studies for finals??
Scott and Christopher left for Tennessee on Saturday morning. Why, knowing the boy will be home the following weekend, does my heart hurt just watching them pull out of the driveway? Scott said it well. Every time we return the boy back to Milligan we are “leaving him” rather than “taking him.” I never realized I was a control freak until my child was diagnosed. For ten months I was able to control practically everything he did, where he went, who he was with, even what he touched. Now we are leaving him to fend for himself. No Mary Jo two houses down! Will he remember to wash his hands after he touches a door knob? Will people stay away from him when they’re sick? Is he remembering to take all his meds? Surely he’ll never share drinks with anyone??? Let me tell you, this is a real struggle for me! God really has His work cut out dealing with me.
I am thankful for Christopher in so many ways. I am humbled by the man he has become on this journey. I have watched him speak with respect and kindness to the nurses even when he feels awful. He has shown concern for others and has been mindful to not let this diagnosis become the “Christopher Show” for lack of a better description. He does not want to draw attention to himself. He has always said that while he may have cancer, there are so many who are much worse off than himself. He is not letting cancer become who he is. He is a man seeking God’s will for his life and trying to figure out how this illness will help him accomplish God’s purpose.
I am also thankful that the boy indulges me. He keeps the eye rolling to a minimum when I open a door so he doesn’t have to touch the handle. He obediently accepts hand sanitizer after touching a menu. He allows kisses on his forehead for fever checks. He wraps me in his arms and says “I love you, Mom.” And for that, I am most thankful.
To end this blog update, I ask for prayer for Christopher during this week of finals. We all know that sleep is evasive at best and minimal on any given night during finals. All nighters are common. This is fine for a normal, healthy person with a good immune system. Please pray that he gets good rest and that his body has the strength and energy to get through the week. Also, prayers for safe travel home for Christmas are always appreciated!