Stoic Lenox’s Legs

In spite of the great blood count news which held the possibility of a “rowdy” (it’s all relative, right?) last few days, other than a few more outings (Target, Chic-Fil-A, and Lego Store), Lenox has still been surprisingly subdued and still not interested in seeing most folks or being more active. We have had to turn down visits from several folks who I thought she would really want to see ( sorry Paris/Amy and Lucy — she loves you all lots!) But I think today some observations we moms had clicked together and now we can appreciate her preference for limited activity. We really started noticing and worrying over the last 48 hours: she would fall down when climbing down from the sofa, bed or down the one step of the van; she would not walk upstairs often (she almost always asks us to carry her) and when she did she was also using her arms on the steps in front of her; she tripped over seemingly nothing and would trip up stairs or curbs; she told us her legs hurt; and when you set her down sometimes her legs seemed to give out. Was this her balance or equilibrium? Was this maybe her weight gain messing with her? Was she still that fatigued? So as Liz and I were considering all these observations, I asked Lenox today why she had us carry her and she said “cuz sometimes my legs can’t hold me”. Well, as you can imagine all that together worried us and we called the doc today.

As expected chemo has many side effects and the specific effects for each drug arise to greater or lesser degrees for different patients and some more commonly than others. One of the side effects of Vincristine, a chemo drug she has now had four times, can have some neuromuscular impacts and since her most recent dose on Wednesday she is having “exaggerated” effects per the oncologist. They said since the chemo stays in her body and accumulates, the side effects often aren’t seen much those first few weeks and then become more pronounced as it builds up in her system. So she seems to be experiencing what they call peripheral neuropathy, decreased sensation and numbness/tingling, difficulty walking and leg pain.

Well no wonder she doesn’t want to move around a whole lot — I wouldn’t either if my legs gave out, felt numb and hurt! Lenox is such a total trooper – I would be so frustrated and vocal about it if my legs kept not holding me up when I was counting on them. But she never said a word or complained – just changed her routines and activity level. Her fortitude and patience just so wow us! I feel so bad for her thinking she finally has the ability to fight off infections and even has some energy, but now she still can’t do much because her muscles are unreliable at best and painful at worst.

They said this may clear up and she could regain her normal muscle strength and consistency in a few weeks but since she will be on Vincristine off and on for about the full 2 1/2 years it may quite likely not get better, and may worsen during that time. Some kids have this particular side effect for a long time. The doc did say very long term (her example was 5 years from end of treatment) that it is very uncommon to have it persist.

So we will just face each new thing as it comes with Lenox’s unfailing stoicism. Thanks everyone for your thoughts and prayers!