Tuesday, July 24, 2007


It is 5 pm and as i watch toby sleep, i cannot stop the tears. i've never written during chemo, because it's so hard to sort everything out. there's a huge amount of purely physical challenges and an equal amount of information to digest. there's the awful sights and sounds of the pediatric ward. and then there are the continuous waves of emotion, which are pushing me down today, no matter how hard i struggle to rise above the surface to take a breath.

this is our fifth time here, watching toby as he endures the onslaught of chemotherapy. much is familiar: today we see a tiny baby hooked up to yards of tubes, an 8-year-old with such a shrunken body that she looks like she’s four, many children who can't walk or move or stop vomiting, kids with skin color so unnatural and mottled that they look like preserved scientific specimens, children with disfigured limbs and anguished faces, and we hear many, many screams of pain. We are exhausted and depleted and sad, but shocked anew each time we witness the barbaric treatments for this most terrible disease. The children here are all enduring the worst and it should not be so.

There’s also the unfamiliar: this cycle carries with it the risk of further hearing loss. Toby already has some difficulty discerning the difference between the letters “t” and “f” and “s” when they appear at the beginning of words. This is called high-frequency hearing loss and it can worsen with this cycle, to the point where hearing aids are necessary. This is also the first cycle that we’re starting at a very low bodyweight and the first time that Toby is completely without eyelashes, adding another uncomfortable element to the mix. His eyes are constantly irritated without eyelashes to shield light and dust. Toby’s counts rose over the last week, but not nearly as high as in the past. His marrow has taken a real beating and it’s obvious that his little body is struggling to keep afloat with so much working against him: there’s the huge scar left over from surgery, and the four new incision points from bone marrows that were done on Monday. There’s the low counts that cause exhaustion and the low weight that makes sitting in any position uncomfortable… the bones stick out everywhere and there’s just no fat left to cushion him. And there’s the overwhelming nausea from the drug cisplatin. My brother called this chemo agent, “the worst of the worst.”

Today we also have to contend with the unthinkable: a possible 6th cycle of chemo and a possible 2nd surgery for the lesions in Toby’s neck, followed by more chemo. Our doctor spoke of these steps today, and he'll determine if they're necessary once this cycle is complete and followed by a full work-up of scans: repeat CTs, MIbGs, MRIs and more bone marrows.

Through all of this, Toby doesn’t complain or cry. He is in pain, sick, hungry, nauseous, and unbelievably uncomfortable, but he’s still making conversation, still pointing out that the taxi medallion number appears on the top of the cab, as well as on its license plate, still occasionally smiling.

And my biggest fear: that this intervention will “break” my beautiful child. That he will not be Toby once this is through. I look at him and cannot believe what he is enduring. And I wail.


Anonymous said...

Scary chemo time has come around again. I hope you'll all continue to let all of us out here hope and hold and cry along with you.

Such a treat to see your lovely photos and to have read the blog about birthday boy Stephen. Best wishes to all,

Nancy W.

Anonymous said...

Your wailing reaches us through your writing, it tells us that this suffering is unjust. And it reminds us that there is no normalcy in what you and your family are enduring. It should never be 'normal'. But your son is beautiful, clearly a fighter, and you are his champion. There is grace in that. Normal will come again. He will not lose his essential self. Your wailing is a call to arms, to fight, to do all that you can to love and guide each other through the unknown. Our thoughts are with you. Thank you for being so open.

Anonymous said...

What you are enduring is so incredibly trying. I cannot imagine better champions your son could have than you and your husband. The love and fierce devotion you have for Toby shine through in the eloquence of your posts as you document and testify to your son's strength and beauty. Toby is still your Toby; I cannot even fathom how difficult it all must be, but try to have faith that his intrinsic self will remain. His experiences will perhaps make him into a more insightful, compassionate, mature child than most, but it sounds like that was where he was heading anyway! I admire you and your husband greatly. I hope you can feel the prayers enveloping your family from all over the country.

Gila said...

Your words cut so deeply and move me to tears. At work, with every child with cancer that I provide care for - chemotherapy,hydration, antibiotics, tpn - I think of Toby - I think of him hooked up to the backpacks of chemo and fluids as he is now. I pray that this time it will go smoothly - with no fevers, with tpn to nourish him if it's possible, so you would have that one small reassurance and one less worry of feeding him when he is nauseous, and with no hearing loss. I send my love and hugs and support out to all of you.

Jessica said...

Your post leaves me speechless, but I have to say something. Your strength and grace, and the bravery of your amazing little boy are a testament to the human ability to survive the worst, and find some meaning and beauty in the world. Toby's toby-ness will not be broken, especially with the incredible support and courage his parents give him every second of every day. Please, Mooki and Stephen, know that our prayers and good energy are flowing your way all the time. And know that when you need to cry, there are many here to hold you and help in every way we can.

Anonymous said...

Wail, Mookie. Wail and wail and wail until you cannot wail anymore. Let the tears flow. Let them stream down your lovely cheeks and then let those that love you wipe them. Stand up, walk towards that boy of yours, and hold him as tight as you can. Your love, your power, your strength, your energy...it filters through you and into him. You, Stephen, and Toby will get through this. No chemical, no toxic substance, can break your boy. He is who he is and yes, this will make him even a more gentle being than he was (although many of us doubt he could be more gentle and amazing!) Mookie, you can do this. YOU CAN DO THIS. and so can Toby. We are here for all of you.

Anonymous said...

if it helps...you aren't crying alone. there are tears in my eyes right now...and a strong strong belief that toby's spirit can't be broken. through the last months he has shown more strength, humor and wisdom than one would expect of such a little person, and i am sure he will continue to amaze. i think about all the love that is surrounding him and all the people praying for him and thinking about him and i just KNOW that he is going to surprise us all with his next observation/game/thought or story. and i also know that it is perfectly right to give yourself the permission to cry and be angry and despair....all such natural and reasonable responses to the complete unfairness of it all.

Anonymous said...

Yes, to what they said. Your words are achingly beautiful, your despair palpable, your spirit indomitable. I'm just another stranger offering my hope, love, tears, and a couple batches of platelets so far. You're not alone.

Anonymous said...

I'm so so sorry you are going through this. Sending you all strength love and hope xoxox