Thursday, July 12, 2007

Altered States

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?
A: None.

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.

17 comments:

Anonymous said...

You and Toby are in my thoughts and prayers. Toby is such a fighter, and we do not have to look far to see where that trait came from. Toby is so lucky to have you, fighting for him. God bless and take care,
Your neighbor Jennifer

Regina said...

Dear Mooki and family,

You are doing everything possible to protect and shield Toby, and to make him comfortable during this painful, counter-intuitive time.

There is so much that we do not know. I hope that sharing your experiences with all of us is helping to lighten the heavy burdens of not-knowing.

Sending many blessings for healing and hope--one day at a time.

Regina

LindaSueBuhl said...

You express eloquently the dilemmas of people dealing with a loved one undergoing cancer treatment. It just plain stinks! Toby sounds like a marvelous young man. In a perfect world - none of this would be happening but in the real world you are dealing with things that are best handled one bit at a time. Remember the admonition of how to eat an elephant (sorry animal lovers!) just one bite at a time. Bless you.

JoAnn said...

Keep your eye on the proze, Mooki. It doesn't matter if there are no prior graduates as long as Toby is the first. It doesn't matter if the cure rate is 15% as long as Toby falls within that 15%. And finally, Leonardo Da Vinci left notebooks full of drawings and calculations that no one could decifer for ages (really) until somone accidentally held one up to a mirror. He wrote his notes backwards. Toby's on the path to brilliance!

Anonymous said...

Each post is more eloquent than the last, it's truly a gift. Please remember that people do beat the odds. Of course your pain and suffering is unique to your family, but I do want you to know that someone in my immediate family is the first person to ever survive a very serious type of cancer that effects the brain. He is a case study for all of the doctors who worked with him. He has defied the odds. It happens. I swear it really does.
A Neighbor

Meghana said...

Miracles happen every day, every minute, more than we realize. Whenever someone says "well it's never happened that way", I secretly add "yet". I think about you all the time and sending good, good, good vibes...
your Windsor Terrace neighbor (we just haven't met yet),
Meghana

Tracy & Bruce said...

Most days we wake and feel, "there but for the grace of God go I" ... what does this really mean? Before my personal involvement/ cancer with my mother, father, aunts, uncles, Toby; even I might have said it's something that happens to "other people" and that would be the Grace afforded. Not so, as the testaments within this forum account. The advances of modern medicine cannot be seperated from the greater Hope of Faith. This is one way to see your way. Toby's medical triumphs are his continued Rants... keep up the good work Mooki and Stephen!!!

Anonymous said...

my dear mook,
you are asking frightening questions and raising philosophical issues. it is chilling to read it. it is a whole pandora box that you are opening.

I know it has been on your mind for a long time. but those questions are asked by your brain and your mind, and though the answers are sometimes impossible to bear, your heart and your motherly instincts dictate to you what you should do. the instinct is to save your child. you are doing the only right thing that a mother can do in spite of the suffering and fear. you are fighting for your child's life.

and there are good answers and good news. toby's body is fighting the cancer and gradually winning.
and toby's is starting to read. so very early he is starting to read! his curious mind and his creative intelligence are blossoming in spite of the bodily inflictions.
Congratulations Toby !

I know my child that your heart and blood were put into the message you wrote for the blog, I felt your pain and torture. I am sending you my blessings for toby's improvement and recovery and for your peace of mind and strength.
I love you dearly
mom.

Anonymous said...

Dear Mooki and family,

As you know, I don't really know you (except for a time we met in the park a few years ago, and when we said hi at the benefit, and some people we know in common), but my immediate feeling from reading this recent blog entry, and in general, is just to want to send so much love to all of you. Please let us try to all hold you in whatever way we can. I hope you can feel it!

Nancy W.

Anonymous said...

Dear Mooki & Stephen,
You have often asked me how I can be so positive. I confess to you now that I also rant and rave, I beg, beseech and bargain with God. I continue to be hopeful with the knowledge that the oncology physicians at Sloan are at the cutting edge of research and that Toby has the very best care available in the US. He also has amazing parents who are loving, caring and watchful at his bedside. I pray that you retain your strength, that you manage to get some rest, and that you know we all are praying for you. Love, Merci

Anonymous said...

Dear Steve and Mooki, We all feel your pain, and want to tell you about a young Jewish woman who understands what you are going through. Her name was Miriam, and she had a son named Josua. They were observant Jews, had celebrated his circumcision, and were faithful to shabbat, passover and all the Jewish holydays. But there were many things Miriam did not understand about her son- such as the circumstances of his birth.
One day, returning from the Temple in Jerusalem, Miriam thought he was in the company of the men, and his father, Joseph, thought he was in the company of the women. They were astonished to find Josua teaching in the Temple! Miriam was confused by her son's behavior and kept all these things in her heart.
Later, when he was rejected by some of his neighbors, and when he was suffering and in pain, her tears flowed freely- and she still did not understand why these things were happening to him. But she stood by her son and always believed in him.
We Catholics call Miriam, "Mary" and her son, "Jesus". But Miriam was a real flesh and blood Jewish woman- not a statue dressed in pale blue! So today, we're asking Miriam to take your hand and walk with you on your painful journey.
No matter if you think of her son only as a prophet, he is in fact an historical figure, who did cure the sick. In our prayers, we ask Jesus to bring healing and peace to Toby and all of you. Love, Aunt Blanche & Uncle John.

yochi said...

Dear Aunt Blanch and Uncle John,

Your message is very touching and beautiful.
Thank you.
Yochi, Mooki's mother.

Anonymous said...

I've been reading this blog since the beginning and have shed many tears from your amazing writing about what Toby is being put through. When I read this post about the long term effects of treatment, I became so upset and did a little bit of research to find out more. I'm not sure if you've seen this recent research dated June 5 2007? I hope I'm not being too forward by sending you this, considering that you don't even know me.
http://tinyurl.com/2kt6r6
Good luck, I am thinking of you all the time.
-Rachel

Anonymous said...

I just re-read the study I sent and see now that it pertains to intermediate risk neuroblastoma. ARGH.I'm sorry-- I tried to remove my comment but don't seem to be able to.
-Rachel

Anonymous said...

I am another person you have never met, who learned about Toby, and this blog, through a close friend in Park Slope.

I, too, have been moved, Mooki, by your openness and eloquence in the face of such pain and suffering. You have incredible strength.

Sending lots of love and prayers to Toby (a brilliant and beautiful boy), you, Stephen, and Yoni.

Love,

Dani (from Jamaica Plain, MA)

mira,israel said...

dear mooki and stephen,
we all pray for toby's health
we all pray for god to give you the strength to continue on your brave fight, miracles do happen - doctors have seen that more than others.
reading the blog - i'm proud to be called your cousin!
love,mira,israel

mooki said...

these are really extraordinary comments. each of you has helped us with your wise words, your love and your willingness to participate in this dialogue. thank you and love, mooki