Monday, July 30, 2007

(More) Bad News

Toby has now completed five cycles of chemotherapy. These first five cycles are known as the induction phase with the goal being to "induce a remission," that is, to clear the body of any detectable neuroblastoma. Before starting treatment, the neuroblastoma was in Toby's adrenal gland, as well as in his abdomen, bone marrow, and in many of the bones throughout his body including several of the cervical vertebrae. After the third cycle of chemo, Toby had re-evaluation scans and bone marrows to determine how well the treatment was doing its job. At that time, the primary tumor in the adrenal gland and the abdominal tumors had shrunk significantly, but there was still some residual disease in the bone marrow and the lesions in the cervical vertebrae were relatively unchanged. The hope was that the remaining two induction cycles would successfully take care of the marrow and cervical involvement. Last week, before starting his fifth cycle of chemo, Toby had (yet) another bone marrow aspiration and biopsy done to see if the neuroblastoma that had metastasized there was now gone (the vertebrae will be looked at later to see how they've responded). Mooki and Stephen just met with Toby's doctor and unfortunately, there is still evidence of neuroblastoma in Toby's marrow.

What this means is that instead of being in a complete remission, Toby's disease is classified as being in partial remission. This has many implications, most immediate is that rather than proceeding with the next phase of radiation and antibody treatment, Toby now has to undergo an "extended induction" with another round of chemo. This sixth cycle will combine cyclophosphamide, which Toby got in previous cycles, with a new drug called topotecan. The idea is that because the neuroblastoma isn't responding as readily as hoped to first-line chemo, additional novel chemo is introduced in an effort to induce a remission.

Obviously, this is bad news. While many kids with advanced neuroblastoma need extra cycles of induction-chemo to clear the neuroblastoma, this is not what we were hoping for.

Toby is still recovering from this most recent round of chemo with all the usual potential bumps in the round (risk of infection, frequent transfusions, etc), but this is an especially big and devastating bump. In the next couple of weeks Toby will have the sixth cycle after which his doctors will take another look at his marrow and he will have a complete set of restaging scans.

Mooki and Stephen are distraught, depressed, and frustrated. It seems as if each small treatment-related gain is followed by an equally, if not harsher setback, forcing them to come to grips with a new reality. Throughout these horribly difficult days, weeks, and months Mooki and Stephen have continually reinvented themselves and have found new ways to remain strong for Toby. This is no easy task. Now more than ever, Mooki and Stephen need your continued love, support, and encouragement. Please write, post a response to the blog or send Toby a picture or card. I will be in NYC tomorrow for a few days and will send another update once there.



Bklyn Born said...

Mooki and Stephen,
I think about what your little boy is going through and the strength and love that you have shown in the face of this terrible disease. As one of the many people in your extended circle who hope and pray for Toby, I am so sad and so frustrated by this latest news. Whatever the source of your amazing strength, I hope that it will continue to sustain you and Toby during this next difficult period. The Hasidic father in the hospital got it half right. You are both tzadikim.

~Lisa in Israel

LindaSueBuhl said...

So very sorry to hear that you have once again gotten difficult news. People who have never met you or Toby are praying for all of you - strength, comfort and a sense of peace. We continue to pray for a complete healing in Toby's body.

Anonymous said...

I have been reading your blog daily, and it is both uplifting and heartbreaking to see Toby's beautiful face in happier times. You have been on such a rollercoaster since April! You are all amazingly strong, and Toby is a beautiful, strong, courageous child. We are all praying for you and sending love and good karma in the direction of the hospital and Park Slope.

Heather said...

We continue to send you our love, strength and support as you deal with this awful news. Please know that our thoughts and prayers are always with you and Toby.
Heather, Morgan and David

Bklynite said...

For the past 6 months, I've been reading the blog of a childhood friend who, at age 34 and pregnant with her 2nd child, learned she had stage 4 lymphoma. It was very, very serious and her odds were not great (the pregnancy was terminated, as she wouldn't have lived to give birth anyway). Last week, on her daughter's 3rd birthday, my friend was declared in remission, disease-free. Healthy. We, the literally thousands of people who have followed the saga, are exuberant. Yet during the weeks and months of ups and downs, it seemed dangerously irrational to even imagine this day.
Your son is not my friend. Their diseases are different, their ages, their locations. But I do know that miracles are happening, right now, and that people are celebrating who so recently had sunk into chasms of despair.
I hope that you, too, will have a day of such celebration, even if right now it seems dangerously irrational to imagine.
Let our thoughts and prayers buoy you.

Anonymous said...

I want to convey another hopeful tale with an unexpected ending. In 1989 my aunt was on the phone and suddenly had an amnesiac moment - her husband was a doctor and dismissed an ER doctor's conclusion that she was having an anxiety attack, and pushed a CAT scan - long story short, she was diagnosed pretty quickly with oat-cell lung cancer that had spread to her brain. Apparently her odds were bad (this was 17 years ago after all) and the doctors and nurses knew it and no one really discussed it much with her. Somehow she rallied and went into remission and now she's 18 years past diagnosis and has survived her husband of many years, and is about 73 years old and healthy and was mostly left with hand tremors after her treatment. Now I too know that these are different illnesses and different people, but wanted to convey how, we can't predict the future and can only hope and believe.

My thoughts are with you at this time. I want to join with you to give you strength.

Anonymous said...
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Anonymous said...

Dear Mooki and Stephen,
You are my adopted family. I pray for you everyday you're in my thoughts so often. I'm so sad at your suffering and Toby should not have to endure any of this misery.

Just know that I'm expecting a miracle.
As difficult as it may be..Keep the faith.

I hold you in my heart.

Anonymous said...

Does anyone know where to send Toby a card?


Anonymous said...

seen on the wall of the Burlington, VT airport...

The same earth
That would fling us
Would swerve to curve under us
To gather us around
Cora Vail Brooks, 1979

I walk around Park Slope and feel like I see Toby everywhere, even though I've never met him. At the same time, I can't believe he's not, for example, in the beautiful late afternoon light at the Brooklyn Botanic Garden last Wednesday. Or walking back from the sprinklers along 6th Avenue with the rest of the Beansprouts crew on a brilliant blue sky morning a week ago. My daughter (who also does not know Toby and has only heard of me speak about the wonders of your family in passing) asks how he is doing and speaks with breathtaking wisdom and strength and love in response to my reply.

At every moment, the earth curves under you; we all gather you around...

Anonymous said...

as always today your struggle is my struggle. you are doing everything you can. namaste.

Anonymous said...

Your family and especially your brave, beautiful little boy are in my prayers.

Anonymous said...

Love, peace, hope, and healing to you all. Though I have never met him, Toby is in my thoughts every day, and I marvel at his beautiful spirit. Know that so much hope and love is being sent your way, and stay strong.

Lisa Shuchman said...

We are with you -- moving ahead one step at a time. We will cherish the good days with you. We will cry during the bad ones. We will share your anger when things don't go as hoped. And we will rejoice every time Toby smiles. You are never alone.

Anonymous said...

you don't know us but we are keeping you in our thoughts and prayers.

Anonymous said...

Thinking of your family during this difficult time. I will send good thoughts your way -- as well as a care package for your sweet little boy.
Wishing you health and happiness.
(a PSP member)

Anonymous said...

We are thinking of you all, especially Toby and his enduring strength, at this difficult time. Hopefully better news will come very very soon.

Steve, Jessica and Jones
(a psp family)

Anonymous said...

Oh, Mooki, Stephen & Yoni - and TOBY - so sorry for this news of the partial remission. BUT - let us presume that the novel drug will have novel effect. And remember, it need not hit all of the neuroblastoma, but only that which is left. It will do its work, I'm sure.

It's unfair and unreasonable, in every sense of the word, that you're experiencing this. And I'm sure it feels newly untenable. You will regain your hope, though, and with that your strength. Take the time you need to do so - and in the meanwhile and continually, we support and love you.

amy beth said...

Mooki and Stephen--Hoping that the strength and support of your communities will envelop you as you approach the sixth cycle. Your fortitude is immeasurable. With love, Amy Beth

Anonymous said...

Dear Mooki, Steve, Yoni and Toby, We are so sad that after all Toby's been through, some nasty cancer cells have escaped the bullet, and we're praying that this next shot of chemo will kill them all!! Your Uncle John has been thinking some deep thoughts, which we'll try to put into words:
God is not like a puppet-master,that huge giant that's outside the universe, peering thru little holes in the sky, operating us like puppets on strings. He's not an omnipotent punisher of evil and rewarder of good. God is inside and outside of us.
This terrible situation with Toby has actually brought a lot of people together: people of very different social, religious, cultural and political persuasions-they all care for and pray for a sick little boy who is only 3, going on 4. It's not that Toby is a poster child: it's that our common humanity has brought us together- that's really what God is. We're happy when the things we pray for come true, and we thank God. But when we don't get what we want, are we to blame God? So we are praying that the wonderful doctors at Sloan will find the right cocktail of medicines to bring healing to our dear little Toby. Give each other a hug and kiss from Uncle John & Aunt Blanche

Anonymous said...

My family is sending love to yours. We marvel at your strength and courage through the unthinkable. We feel like we are doing more than just hoping for Toby's full remission, we are WILLING it to be so. And, believe you me, we are a willful bunch.

A PSP Family

Sharon said...

Toby's health is in my prayers. I know he'll squash this cancer!
Sharon (fellow beansprouts mom)

Lisa said...

It seems to me that you guys are like snakes, continually having to shed and grow new skin to deal with every twist and turn you face. I know it must be exhausting and aggravating and terrifying to constantly have to do this. We are wishing you the toughest and most resilient skin yet, and enough energy to grow it as fast as you need it.

Love always, Lisa, RJ and Maxwell

Tracy & Bruce said...

As I mentioned before, I receive email every day from people who are "shy" to post? Here is an example from today, "Now, speaking of perspective: I've visited and read most of the
postings on Toby's "blogspot", and of course seeing the photos personalizes those whose lives are being so wrenched by what Toby is enduring. I trust you understand that I am simply without words as a result of reading and seeing all the faces of those involved, but especially Toby's. I hope you will convey that my wife and I shall be
praying for him and his family."
Hope to see y'awl soon. Love, Tracy

Anonymous said...

Dear Mooki, Stephen, Yoni and Tobi,

I cannot imagine what you all must be going through or what kind of mental and physical strength you must master to get through each day. From the bottom of my heart I wish that these days may soon feel like a blur of a bad dream to you as you are enjoying your wonderful family, with Toby being healthy, happy and fully in remission. Your strength and resilience is an inspiration to all and, undoubtedly, a positive force in Toby's road to recovery. Our thoughts and best wishes are with you.

Anonymous said...

Love , hugs. kisses , and sunshine from nettie in florida !! i would love to have ya'll come down to visit whenever it is possible. I am only 45 minutes from disney world. i keep the faith that there will be miracles and a cure completely for sweet Toby! God bless your family and my hopes and prayers are constant!!

Anonymous said...

May God protect Toby and your family. May you rest in the stillness of His hand as He shelters you and carries you through.

Judy said...

Dear Mooki and Stephen:

I'm back from Paris and just reading the news. I got home today to find the CDs I had sent to Toby were returned to sender. Is there an address I can send them to? I can come and visit at the hospital and bring them if you and Toby have the strength for it.