Well, we survived another day at the clinic and we got some good news and some not so good news (I just hate to say bad news at this point!). Kennedy’s bilirubin levels were low enough to receive her Vincristine (Mean Christine) and her white count is in check. We were so excited to see Kaitlin and her mommy and are absolutely thrilled that they will be joining us in Mulino! It’s true! They bought property near us and are building a house! How fun for all of us. Keith and Roger actually knew each other before the girls were diagnosed and we met in day treatment. The girls are only a year apart and we can’t wait to get them together outside the setting of the hospital. Kennedy has also gained 2lbs this week. I’m sure it has a lot to do with the fact that she is no longer vomiting and eating in addition to receiving formula through her NG tube.
Now the not so good news…Kennedy had pt today and it was obvious to Amy that her foot drop is significantly worse. She is now walking with a “toddle.” She walks with her feet apart and toes pointed out, then she toddles back and forth to get where she wants. Dr. Olson said that she now considered at Level 3 toxicity to the Vincristine. At Level 4, when she is unable to stand unassisted, they will either discontinue the Vincristine or significantly modify it. Amy will be talking with Dr. Shih to get Kennedy some different style foot braces that will have a hinge allowing her foot to pull up but not flop down. Because she has many doses of Vincristine left, she will be wearing them for a while. Dr. Olson again brought up the idea of testing Kennedy for a genetic disorder called Charcot-Marie-Tooth Syndrome. CMT is defined by Linda Crabtree as “It is also called peroneal muscular atrophy because the peroneal muscle down the front of the shin that enables you to pull your foot up is usually the first muscle to be affected. A weakened peroneal muscle can cause sloppy walking, drop foot which causes tripping and you must lift your leg from the thigh so that your toes clear the ground and your foot slaps onto the ground, hopefully heel first.” Check out her website at http://www.kaikracht.de/cmt/english/text.htm for more information. She will first need to have a EMG or electromyography to determine what strain she should be tested for. An EMG is a test that assesses the health of the muscles and the nerves controlling the muscles. You can find more information about this test at http://www.nlm.nih.gov/medlineplus/ency/article/003929.htm. It is not a rare condition but is not often seen in children. It most often affects older people but because my grandparents had diabetes, polio or died young, it’s very hard to tell if they had it without testing them. Unfortunately, all it means is that they will be more aware when dosing her chemo and in treating her for therapy. Kennedy also was given a new prescription to deal with the side effects of Vincristine. She has been having severe pain and says that it feels like “needles coming out of her skin.” It is common to have a “pins and needles” sensation similar to your foot waking up but what she has is more than this. She literally tenses up and screams. It is often centered between her shoulder blades which is also frustrating because she can’t reach it. This new med will hopefully help ease this pain or at least decrease it’s frequency. Kennedy’s counts were also too low to receive her IV Methotrexate. Her platelets needed to be 50 but were only 46 so we will be back on Friday to check her counts again. I guess it is always something!
Oh, I forgot to mention that it looks like the “boot camp” therapy is the plan. Kennedy will be so thrilled after the episode she had today! She had decided that she was done walking and navigating unstable surfaces and just gave up. She began screaming and demanding that she needed me. It was very difficult for me to stand by and not rescue her from her work. I try not to intervene unless absolutely necessary so I stood by even after she went to the “quiet room” with a timer to regain her composure. I can understand her frustration but also know how important it is for her do her exercises. Boot camp ought to be a blast 🙂
Things continue to go good here though. I’ll be glad when she gets back to her normal sleep patterns. Being in the hospital for so long only confuses your body about normal cycles with night and day so we are having problems getting back to that. Check out our fundraisers page for the upcoming Indoor Garage Sale. Oh, and we are working on the guestbook issue so please do not despair. We meant to stop in and see Rebekah today but we finished up at the clinic just in time to get Austin from school-hopefully we’ll see her and her family soon.
Pray for all the kiddos fighting cancer or working through the effects of treatment including:
Gage
Joshua
Oliver
Nikolette
Madeline
Kaitlin
Rebekah
And many, many more…
Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith. ~Author Unknown
Love-Hope-Faith
Mel
