Toby is beginning to read and one of his favorite activities is reciting the titles of books backwards. So “Clocks and More Clocks” becomes “Clocks More and Clocks.” 207th street becomes 70th-and-2nd street. Most kids go through this developmental stage of reversing language. The difference with Toby is that he engages in purposeful inversion. It amuses him to no end.
And I wonder whether he’s onto something. Backwards, backwards, our life seems so backwards. If only I could find some meaning in it.
These are the questions I asked Toby’s pediatrician in past years:
So, how’s he doing?
How tall? How many pounds?
What percentile is that?
When do we make an appt with the dentist?
Should we eliminate the bottle?
And these are the questions I asked Toby’s doctor last week:
Q: What is the tumor pathology?
A: neuroblastoma, adrenal gland; neuroblastoma in 32 of 34 excised lymph nodes.
Q: Do you have the results of the bone marrow aspirates yet?
A: 3 sites were negative, 1 was positive
Q: We noticed “foot drop” after the first few hours of chemo; is it permanent or reversible?
A: It “should” become less visible, although there might be nerve damage.
Q: What are the hva and vma levels now that the tumor has been removed? (hva/vma are metabolites secreted in urine and strong diagnostic markers for neuroblastoma)
A: Normal levels of VMA for Toby’s age are less than 10. Toby’s pre-surgery level was 223. HVA levels are normal when they’re lower than 22. Toby’s HVA was 269 prior to surgery. (this was the first time we actually heard these shocking numbers). Today his VMA is 9 and his HVA is 16.
Q: On the CT scan we notice that 3 rounds of chemo have had no effect on one of the lesions in Toby’s neck… it’s still almost 2 cm long.
A: We will see how it responds to 2 more cycles of chemo. If it’s still there, it might require another surgery and/or radiation to the neck area.
Q: How many of the 18-year-old graduates at last week’s MSKCC “commencement” were neuroblastoma survivors?
And these are the questions I didn’t ask:
Q: How many pounds does Toby have to lose before you declare an emergency? Does he look transparent to you?
Q: How many disfigurements and losses do we have to accept as necessary and justified on this hellish road to “cure”? Does loss of hearing just not matter? What about sterility? Or growth loss due to radiation?
Q: Why do you have to poison these kids to within an inch of their lives before you can save them?
Q: Why do so many kids with neuroblastoma relapse?
Q: How can you do this to my child?
Q: Is Toby going to live or die?
Most days I feel like we are forced to ignore every normal impulse we have as parents and humans to fiercely protect Toby from danger, to shield him from pain, to keep him comfortable and safe and happy. Most days Toby and all children with cancer experience suffering and pain and discomfort and fear that no child should ever feel. I wish that this backwards existence would end for us and for them.
Ed Clark, Christmas Guest
11 months ago