Pressing On


We are surviving! After the initial taking the boy back to school, getting housing issues resolved, meeting of the new doctor, saying goodbye and returning home craziness, life has settled into a nice routine for everyone involved.

Saying goodbye at Milligan was made a little easier knowing I’d be back to get Christopher in less than three weeks.

Rory and I headed down to Tennessee on Friday, September 6. We were supposed to leave on Thursday, September 5, drive to Athens, Tennessee to spend the night with Lea Ann and family. The next day Lea Ann, her son Zane, Rory, and I were to carpool to her parents, Tom and Barbara Barkes, to spend the weekend before returning to St Louis with Christopher.

I picked Rory up from school, we hit a drive thru for lunch, then started out of town. We weren’t a mile out when Rory and I looked at each other and said “What was that???” We shrugged our shoulder and drove on. It became apparent very soon, that there was something seriously wrong with the Jeep. Like any normal wife would do, I called Scott and said “The car is acting weird.” I’m very car savvy like that. We turned around and drove to the shop where Scott works. By then, the car would barely shift. Scott drove the Jeep and I followed him, in the other car, to the gas station and hoped for the best.

Shortly after Rory and I got home, we called Christopher and Lea Ann and explained we wouldn’t be in until Friday. My mother called right after this happened and I told her what was going on. It doesn’t matter how old you are, your parents always want to take care of you. It’s the best feeling ever. Mom and Gene rented a van for us to ride in comfort and style to get the boy. It was fun driving a new car and seeing how the ‘other half’ lives!

The only problem with driving back to St Louis in a new car equipped with a DVD player and comfortable seats that recline, is that my passengers were terrible company. They sat in back, talked, watched movies or slept the entire time. That said, my heart was full having my two babies with me.

A side note, it is a really odd feeling to be so excited to go get a child to bring him home for chemo. I don’t know if you can fully understand that. I hope you never have to.

Christopher has three cycles that involve Nelarabine during the first nine months of Maintenance. He had never had Nelarabine without being followed by the drug ARAC. We didn’t know how he’d feel after this drug and no way to know if it did indeed make him feel badly and if so, were the effects masked by the side effects of ARAC. This is why we initially decided to have Christopher come home so soon after the start of school. It would also be the first time he’d gone four weeks without being seen at clinic. We wanted Dr. Kothari to see him and decide how Christopher was doing during that first month of maintenance.

Nelarabine is given 5 consecutive days and the IV drip lasts an hour.

We arrived at the clinic fashionably late. The ladies at the front desk were excited to see Christopher. They said “Dr. Kothari has been looking for you!” We apologized for being late to which they replied “Oh, he’s not upset, he’s bored and wanted to hang out with Christopher.”

We were called back to get vitals and we were greeted as if we’d been gone for years. Everyone was so sweet and genuinely glad to see the boy. His main nurse, Carolyn, told us “I was scheduled to be on phones today but I asked to be on the floor today since I knew Christopher was here this week.”

The visit began with Dr. Kothari. His first words to us were “I’ve got good news and bad news.” Won’t lie, I freaked for a moment until he continued “Good news for you Mom but probably bad news for you Christopher. According to the rules of the study, you have to come to St Louis for Nelarabine and you have two more rounds of it. Sorry, you’ll have to leave school for those weeks but I’m sure your Mom is totally fine with that.” Uhhhhhh, yea!!!

The boy was accessed. For some unknown reason this time the nurse had a hard time. I could tell Christopher was uncomfortable. The more she worked to get him accessed properly, the more pain he was in. He had not had this much trouble being accessed since the first time being accessed after his port placement surgery. It was hard to watch, though, I’m sure, even harder being on the receiving end of the needle. A second nurse was able to set it right and all was well. Labs were drawn and the wait for chemo to be delivered to the clinic began.

The pharmacy will not mix Nelarabine until we are on campus due to the fact that it is a study drug and very expensive. Mondays are always busy and this day was no different. I think it took close to two hours to get the medicine.

The lab results were fine but Christopher’s hemoglobin level was surprisingly low. By Friday he decided it would be a good thing to get a unit of blood just to give him that little extra boost, especially after having a week of chemo.

Christopher slept a lot while he was home. I’m sure it was a combination of being exhausted from transitioning back to life at Milligan as well as receiving chemotherapy all week. One of my favorite parts of the week was the fact that Christopher was able to attend one of Rory’s cross country meets. It was a great week of being together as a family, including having Luke with us a few nights.

Christopher will be home for fall break in two days. I am beyond excited. Texting, phone calls, and Skype are wonderful tools but nothing compared to wrapping your arms around the child you love.

Today is Monday, October 7, 2013 and marked a mile stone of sorts. The boy had his first appointment with his new Oncologist in Asheville, NC. He was in good hands. Tom Barkes willingly took on the role of Christopher’s family today. How incredibly blessed we are to have Tom and Barbara step up and take our place while Christopher is in Tennessee.

Today involved all the paperwork that is involved with meeting a new doctor. Accessing went well and labs were drawn. Treatment today was a Vincristine push. Christopher told me he had been feeling nauseous and tired lately and was curious to know if he’d need blood. He didn’t. This is good and kind of disappointing at the same time as a unit of blood gives a nice little boost. He also got his flu shot. He continues with the daily oral chemo.

Christopher was most excited to see he had gained weight! He has been SO skinny from all the chemo so not only does the weight gain indicate his appetite is returning, it’s an indication of muscle gain, which means he is feeling well enough to resume a semi normal life! As you can imagine, this is a pretty big deal. He’s been practicing with the volleyball team. His strength is slowly returning though there are still many things he can’t do physically, such as walking lunges.

Rory has been missing Christopher. As the proud owner of a hand me down cell phone, Rory has been calling and texting Christopher. One day Max and I walked to the bus stop to meet Rory. Rory got off the bus, walked over to me and said, slightly disgruntled, “Well, I guess Christopher is feeling ok.” When I asked why he said it like that and he replied “I tried calling Christopher to talk and he was on his way to work out and that he’d have to call me back later ‘cause he didn’t have time to talk to me.” Rory will tell you he wasn’t upset and that he was happy his brother was feeling good enough to workout because he doesn’t want you to think he’s mad or hurt. Truth be told, he’s missing his brother.

We are counting the hours until we are together again, if only for a long weekend. I ask for your continued prayers for Christopher’s health and safety as he travels, but also as cold and flu season is almost upon us. (If you’re in Tennessee and feel the need to disinfect campus for me, please, feel free! )

Christopher is feeling better and able to be back at school, but don’t forget, his fight is still very real.  May God be glorified through this journey.

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