March 13th 2008

Today Logan actually made it into the machine for radiation treatment. The whole process took about 40 minutes from start to finish was much quicker than we expected. The radiation machine looks a bit like a giant scanner over top of a table. It took a fair amount of time to get her lined up and bolted down properly before treatment could begin. The technicians were back and forth many times, checking monitors, getting approvals from the doctors and readjusting Logan. She was a champ and didn’t complain at all. She didn’t panic when they secured her to the table and she lied perfectly still.  They promised her it would be much quicker moving forward, for the next 10 treatments of “BOOST” to the posterior fossa, she have her in and out in less than 15 minutes. 

After those are completed, the treatments will be longer and we will radiate her head and spine together.

We couldn’t be in the room with her during treatment. We had to wait outside and watch her on a monitor protected by a thick metal door.  As the green light came on indicating that radiation had started, I couldn’t help but cry. There is no turning back now. I cried because I felt my hope somewhat shattered as I thought about how desperately I wanted to avoid doing this to her and I cried with the hope that this might cure her.

I was also reminded today of Logan’s friend Makoda. Today is her birthday. Makoda passed away almost 2 years ago from AML and Logan cared very deeply about her. Makoda is the first friend that Logan lost to cancer. I couldn’t help but think of how heartbreaking today must be for her family. Their daughter would never get the same chance at life that Logan has been given. I might not like the choice of radiation but thinking of Makoda and her family, I was reminded that I have a lot to be grateful for.

Having Makoda was on our minds today was a blessing and I think a sign. We told Logan as we left the room that Makoda was watching over her and that we were sure that her birthday wish in heaven would be that radiation worked and Logan would get better.  She liked that and it made me feel better too. I thought maybe I was grasping with my thoughts until I got a tap on my shoulder.

I couldn’t believe my eyes as I looked up and saw Makoda’s aunt.

 Turns out she works at the BC Cancer Agency, saw us on the schedule and just wanted to swing by and show her support.

We smiled, chatted and as she walked away I thanked God…and of course Makoda.

Maybe things would be alright after all……

We left the Cancer agency feeling uplifted and headed to BCCH for another neurological assessment.

We didn’t get the good news we were hoping for. I guess we should know better than to expect anything different in this world of cancer by now.  One moment of being totally uplifted can be quickly replaced by an unexpected slap of fear. It is like riding a roller coaster, all day, every day.

Logan met with three neurologists. They went over her with a find tooth comb and shared with us that her neurological assessment was poor. Her swallowing, eyesight, tremors and walking are noticeably worse. She couldn’t finish the memory and recall portion of the test because she was too lethargic and nauseated to focus. The doctors weren’t happy with how she looked, still too skinny and dazed.  We weren’t  overly surprised with what they shared with us, we aren’t blind, but we hoped the doctors would have an explanation for her troubles other than the tumor.

They didn’t.

Instead, Dr. Hukin increased Dexamethazone (the angry steroid drug) from 2mg a day to 6mg a day in hopes of reducing some pressure in the brain and she also increased the dose of cyproheptadine. Hopefully giving this new cocktail three times a day will be the ticket to feeling better. I know cocktails usually make me feel better.

If it doesn’t work than it likely means the tumor is growing.  Since Dr. Steinbok couldn’t take much out, that is a problem. There isn’t much space for the tumor to grow before things become dire and we need to a watch her very carefully. If we don’t see improvement in 4 days time- we will do another MRI and take a look.

Sadly for Logan, the worst thing that happened today is that the doctors told her she is no longer allowed to drink any liquids and that her meals must be given through her feeding tube until we reevaluate next week. Her assessment also showed she is in the high risk category for choking and because of where the tumor is, we can’t risk it.

Logan didn’t cry when she was bolted to the table today and blasted with radiation but she did cried when they told her no more slurpee’s and no more spaghetti. Cancer is such a bully. 

We are all emotionally exhausted, and upset.

All we can do is hope that radiation the new cocktail will relieve some pressure and things will turn around soon- 4 days to be exact.

In the meantime, I am going pour myself a glass of wine-which Logan thinks is totally unfair. Apparently I shouldn’t be allowed to drink either but wine is about the only thing keeping me sane these days. Logan doesn’t care about my sanity. She said if I had a feeding tube I’d know how she feels. It got me thinking- It’s not a bad idea. It could be a win win. I could buy cheap wine at the liquor store by the bags. It wouldn’t matter how it tasted, I could hook it up and it would go straight to my belly-

My kid is so smart!