Thursday, October 11, 2007


Toby is back in the hospital.

Chemotherapy's impact on the bone marrow and other organs typically reaches its maximum effect 7-10 days after a cycle. It is at this point when blood counts reach their lowest and when fever and the risk for infection is greatest. Toby is now 10 days out from cycle #7 of chemo. His white blood cells are low, i.e., neutropenia (N) and almost on cue, he spiked a fever (F) last night, guaranteeing an automatic admission for I.V. antibiotics for what doctors call "F/N."

Toby also has pretty significant nausea (N) vomiting (V) and diarrhea (D). One of the chemo agents he got, irinotecan, is known to cause diarrhea, but because Toby has so few white blood cells, which normally ward off infection, the diarrhea and vomiting might be a sign of a bad infection of the bowel wall commonly seen in post-chemo neutropenic patients called typhlitis. For this reason, instead of the usual one or two antibiotics for F/N, Toby is on three antibiotics just in case he does have typhlitis. A mainstay of treatment for typhlitis is bowel rest, with minimal to no food. Toby's gut actually sounds like it's "working" so while his doctors aren't allowing him to eat anything (he doesn't have much of an appetite according to Mooki) they are letting him have a clear liquid diet (CLD). Because Toby isn't in the mood to eat he has to get nutrition somehow else. The two options are either nutrition via a tube that is snaked through the nose into the stomach (an NG tube) or nutrition directly through the vein. Because of the N/V/D, feeding Toby via an NG tube isn't the best option, meaning that unless he makes a quick recovery, he'll need I.V. nutrition, known as total parenteral nutrition (TPN).

As you can imagine, Toby's pretty wiped out and lacking in energy. He received a blood transfusion today and hopefully that will help a little, but the constant V/D is extremely draining and fatiguing. The retching associated with vomiting is painful and the frequent diarrhea is irritating both to Toby's body and to his spirit.

Toby will be at Sloan until his blood counts recover, he is fever-free, without an active infection, and able to eat and drink on his own. He is scheduled for another round of re-evaluation scans (CTs, MIBG, MRI, blood tests, and bone marrows) in a couple of weeks to see how the neuroblastoma responded to this most recent round of chemo. Let's hope that Toby has a speedy and uneventful recovery, that he makes it home before he has to endure the next barrage of testing, and that he doesn't encounter anymore abbreviations.



Anonymous said...

Thank you for the update. Here's hoping for a speedy recovery and good news at the next scan. We're thinking of Toby and his family every day, sending all the positivity we can.

Anonymous said...

Toby and family ... thinking of you and sending good karma in the direction of MSK.

Heather said...

We are thinking of you and sending you our love. We hope Toby can come home soon and that he will recover quickly. Love, Heather

Anonymous said...

Thank you so much for posting the update. Toby is in my thoughts every day, and I pray for his speedy recovery. When Toby is strong enough so it won't bother him, please give Toby an extra hug and a kiss from me. Toby is a very strong and beautiful boy, and I am sending all the positive energy I can for his fastest possible recovery.
with love from your neighbor Jennifer whom you have not met in person, (I am also a mother of boys, one who is close to Toby's age)

Anonymous said...

With help from MSK, some R&R, and plenty of TLC, may Toby feel 100% ASAP.

LindaSueBuhl said...

Thank you for the not too abbreviated updated on the abbrev. in Toby's life right now. Praying that PDQ he'll be LOL. Bless y'all

Anonymous said...

Dear Steve, Mookie Yoram & Yoni, On Sunday, we read this hopeful message from the prophet Habakkuk 1:2-3;2:2-4
How long, O Lord? I cry for help,
but you do not listen!
I cry out to you, "Violence!"
but you do not intervene.
Why do you let me see ruin;
why must I look at misery?...
Then the Lord answered me and said:
Write down the vision
clearly upon the tablets,
so that one can read it readily.
For the vision still has its time,
presses on to fulfillment, and
will not disappoint;
If it delays, wait for it,
it will surely come, it will not
be late.
I was so struck by this passage that I read it over and over. May it be a comfort to you all!
Thanks, Yoram- we all need humor to
get us through. Sending our sweet talk to Toby, Blanche & John

Anonymous said...

Yoram, thanks. Hoping that the transfusion helped and that Toby's other symptoms are abating.

Anonymous said...

We are thinking of you and sending you our love and healing energy. We pray for your good health & recovery everyday. npv

Anonymous said...

We are all thinking of you and praying for you guys. We wich the best for the upcoming tests and thanks for posting the new information for us on the blog. Love always sarah josephine, chris, michael, e'mon, chrisshawna and ericka

Jessica said...

We join everyone else sending all good energy your way. I hope that even a couple of days after Yoram's posting, things have gotten a little more comfortable for everyone. Much love, Jess, Ben Leo and Toby Po

Anonymous said...

Thanks, Yoram for your incredibly clear, thorough update. It helps to know what is happening, so that we can send our deepest, heartfelt wishes and prayers to Tony for health and recovery. Love to all-
Sarah, Neil and Ben

Anonymous said...

Yoram, thank you for your updates, it's very considerate of you to bother, and of course we are glad to know that as well as the good medical care there is also a caring and knowledgable uncle to keep an eye on Toby and his progress.

Anonymous said...

I am also sending much love and positive energy yours and Toby's way, and I hope Toby is feeling better.
your neighbor

Anonymous said...

Sending you love and *HUGS*
Wishing Toby a speedy uneventful recovery. You are all in my prayers.

Anonymous said...

Dear Family, The DSL technician just left and finally we are back on Toby's blog after 9 days! Anna has been keeping us up to date but now, sitting here with Dad by my side while reading aloud Yoram's updates and the loving comments, we feel the words flowing through our veins. We pray that by today Toby is doing better and is at home, or is closer to discharge. Pantomime a huge hug and many kisses from Grandfather and Grandmother.

Anonymous said...

My heart weeps with so much emotion when I read every blog update. Probably like three times a day I link onto this blog because I don't want to miss a day of updated information. I am just so concerned about Toby.

I remember the day when you brought Toby to my office, I took him in my arms, stood him up on my legs while holding his little hands, and singing "see saw see saw see saw para el nene", while he is moving front and back continuously. I was amazed on how strong his legs were and you was amazed about the focus look and smile he had on his face. You wanted to learn the song to try at home. I remember us both pregnant sharing stories. Our son's are only a week or two apart.

Having faith and prayer will keep us believing that Toby will overcome this bumpy road in his life. Having a child bearing a bumpy road is an unexplainable feeling, I felt and feel it for Kaylin (my son).

Today I had a conversation with someone who was diagnosed with cancer at a young age. He went through 16 chemos', and I can tell in his face that he is so grateful to be a survivor and to speak about his experience.

Mookie, You have an Amazing family, supportive friends, and loving and caring UJC Co-workers.

Toby - You are a strong boy, keep up the good work. Look forward to see you soon. I send you an Air Mail Kiss.

With Many Blessings and Much Love
Elizabeth Bonilla
Mooki's Puerto Rican Mama (as she calls me)