Sunday, January 27, 2008

Cancer is a blessing

I subscribe to an online neuroblastoma support group, which has become a lifeline of sorts over the last few months. The emails are routinely heartwrenching and usually difficult to get through, but I look forward with great anticipation to the nightly reading, ingesting each message after Toby goes to bed. And I commit to memory the names and histories of so many dear children who I will never know.

A couple of weeks ago, someone from Utah cross-posted a message that originated on another ped-onc listserv. It was titled, “We are blessed!”

I thought about that message today when I learned that a friend’s beautiful 2-year-old daughter suffered a massive seizure on Thursday while at preschool. She had absolutely no prior medical condition. And she died before her parents had a chance to say goodbye.

Toby has been sick for just over 9 months, close to the amount of time he spent inside my body, when he grew perfect fingers and toes, and pounded my stomach walls with his tiny fists, and soared on the waves of my amniotic fluid. We ate and walked and slept together, and he heard my voice always. We were one.

Through this horrible disease, I have been blessed to be one again with my son. I spend more time with him than I could ever have imagined. I am witness to his joy, his fear, his pain and his strength. I hold his perfect warm body as he enters sleep and I thrill to the music of his laughter. I know every inch of his skin, where the scars are still tender and where the tattoos pulsate with his breaths. We are in tune with our rhythms and dreams. And every day we fight against the beast while celebrating life. Nine months of cancer have given me the gift of time and the greatest love I have ever known.


We have a lot of news.

Toby is doing very well. His scans from December were clean, and preliminary reports from his scans of last week look promising. His VMA/HVA urine levels are the lowest ever. He has good energy, appetite and the softest, most wonderful head of hair. Two weeks ago he was able to spend four consecutive afternoons at school, while we sat on the bench outside. And every day he reads a little more… the words on a new-age teabag tag (“keep up!”), building signs (“elevator to street,” “cart drop-off”) and of course, subway directionals (“42 Street Times Sq” and all stops on the F, G, and A lines).

Unfortunately, Toby developed a HAMA (human anti-mouse antibody) during his 3rd round of 3F8. This means that his body has become immune to antibody treatment and he will not be able to receive more 3F8 until the HAMA disappears. This may take a number of months, and one of our doctors admitted that in Toby’s case the HAMA may never resolve. Although a humanized antibody is in development at MSK, it will most likely be unavailable for a number of years. This puts us at a difficult crossroads.

Dr. Kushner and the NB team at MSK would like Toby to start chemo once again, in an attempt to ward off possible relapse. The chemo (Irinotecan/Temodar) would be moderate dose for up to 6 months, on a cycle of 1-week on, 2-weeks off. He would continue to be tested for HAMA during this time. Last week we drove down to Children’s Hospital of Philadelphia for a second opinion. Dr. Maris suggests staying on accutane (Toby has completed 1 cycle) for 5 more rounds and then starting an experimental drug called ABT-751. Tomorrow we will hopefully meet with Dr. Kushner to discuss our next treatment plan, which will probably begin on Tuesday.

We want to thank you again for all your love and support. We ask for your prayers of compassion and comfort for our friends Sara and Eric, as they grieve for their daughter.

Love, mooki + stephen

19 comments:

Anonymous said...

Your tender words of love touch a chord - through this blog I think we all look at our children differently and yearn for that oneness on a more regular basis, another gift you and your family have given all of us.

We are thrilled for all of Toby's positive news and are hopeful that all of the collective docs minds will help him overcome yet another hurdle.

Toby's passion for live and his continiuing growth are an amazement and a lesson for us all. We join you in your thoughts for your friends

Anonymous said...

Hi -

I Got your post on the google alert today and your son is just adorable. My son has NB too and he received the COG antibody trial vs the MSK one. Have you looked into that? They give it at CHoP. Its okay to be on it with prior antibody treatment. I think it needs to be preceded by chemo just like the MSK trial, but you don't develop HAMA and its chimeric (human/mouse) so HAMA doesn't happen. JUst something to look into. Its results are very similar to MSK- best for marrow disease. You might need one round of chemo, or it is high dose chemo within the past 6 months- Im sure you could find it online. I know of a few other patients on ABT 751 that have been stable for years and years and years. Good luck with your treatment plan. I am so pleased to read your son is doing so well.

Anonymous said...

Oh Mooki-
Good news! Thank you for your beautiful words and insight. Truly you are blessed. If you want another consult or opinion for Toby, MGH in Boston is excellent. The doctors there have specialists in all fields. In my experience, they are wonderful and very progressive.
I wish you many more days of love with your amazing son!

Anonymous said...

GO TOBY GO!!!

xoxo.

LindaSueBuhl said...

Always decisions to make - we all know that your family seeks good information and wisdom - and then applies it with a huge heart for that beautiful young boy. Joy about him getting back to doing little boy things - thank you for keeping us informed. Bless you.

Regina said...

Dear Mooki--

"We are in tune with our rhythms and dreams. And every day we fight against the beast while celebrating life." YES.

Since a wordless response doesn't resonate well in cyberspace, I will simply acknowledge that your most recent and long-awaited post touches me beyond far beyond any words I can write.

May there be many blessings of consolation and peace for your grieving friends, and many more blessings of body and soul on this journey of yours. May you continue to BE the blessings you describe, as you continue to bless all of us who bear witness.

Love, Regina

Shabtai said...

Dear Michal,
Sorry to disagree, cancer stinks.
I understand your predicament fully, I think, and have no difficulties grasping your last message to Toby's blog. It's not so difficult. Still, its title is a sham even metaphorically. You are sliding unwittingly, but understandably, perhaps, into tricky theodicy and its justification of evil in a world ruled by an omnipotent and benevolent God.
No, cancer is evil, pure unadulterated evil, and you surely could have come closer (though you have always been very close) to Toby even without the curse of neuroblastoma.
I love you very much and I melt when I see (or even hear) Toby, the smart, wise (yes, wise), wonderful boy, your "son of old age" (I translate the biblical Ben Zekunim) and my youngest male grandchild; but his suffering (and yours) is not for a higher purpose. No purpose is high enough to justify such suffering.
I am sorry, but, unambiguously, CANCER STINKS.
Dad

Anonymous said...

as someone currently dealing with cancer and as a grandparent, I would like to caution against anthrophizing the disease. It just is.
hope, on the other hand, is essential to life. It is at the core of everything Jewish, including humor. Mooki eloquently has written as many of us wish we could of the fear, the uncertainty, the realities of cancer treatment. I read this blog religiously because I hope.

Anonymous said...

mooki - thank you for the update. i check in from time to time and, while i am very happy to hear about toby, i am so sorry to hear about your friend's loss.

your positive outlook in the face of that tragedy (and your own) brought tears to my eyes as all of your beautiful posts have for one reason or another.

stay strong and tell toby we in cyberspace are so very, very proud of him (and you).

xoxo from delaware to your sweet boy.

mooki said...

daddy,
the original title of this post was "looking for faith."

for months i've been trying to find comfort in God or research, antidepressants or blogging.

the people i am drawn to are the deeply faithful: the chai lifeline volunteers and the many parents who write about their religious beliefs on their children's blogs. but i do not share their sense that everything happens for a reason. I cannot see suffering as a manifestation of the compassionate side of God. And i don't want to believe that suffering is part of a process of self-development. I do think that Toby's cancer is changing me, and perhaps changing me in a good way, but there is no way I can justify his suffering or reconcile it with my belief/disbelief in God.

The original post that i referenced included this line: "this thing called cancer... it's like the hail before a tornado... letting us know what may be coming, and giving us a chance to prepare." our friends, sara + eric, tragically had no time.

daddy, i know that you're angry that i posted your comment to the blog. but i had to put it out there... it is so direct, so passionate and contrary. it makes me think. and i love that. although you might cringe, i would like to hear what others think. it might help.

you know that i'm not a particularly positive person. and i torture myself in the darkness of night. but if i can gain some peace or hope by shifting my perspective just a bit... why not?

i love you.
your daughter,
michal

Anonymous said...

Mookie - We have never met but I have been following this blog and was moved months ago to donate platelets, so awestruck was I by you and your family's courage and honesty throughout this process. I was actually the first responder to this post and since you have stated that you would like to hear what others think I wanted you to know that as first I too was too was struck by your title -- but after reading your post I totally got why you choose the title. As I stated in my original comment, your postings have been a blessing to those of us who take our children's health for granted. It makes us think twice when we think that things are not going as we had hoped or planned. It actually has made me (and I am sure many others) more open to the possibility of love and hope - not only for our immediate circle, but for others as well. Would we all trade that for Toby's health? in a heartbeat, yes!
I can't imagine a more poignant exchange than the one you have shared with us - your candor is extraordinary and those of us who have had the opportunity to be a part of this blog have been blessed. May today be a good one

Anonymous said...

today is a blessing.

thank you for your words. it's nice to see so much energy in them!

melanie

samm said...

I know the feeling - of the deepest love, the most treasured time i also spend with Deqlan every day- this nb journey has brought us closer together then ever - we have changed our view on everything. Glad to her Toby doing well he remains in our prayers
God Bless
Samm & Deqlan
www.deqlanhiggins.blogspot.com

themacdonnells said...

Mooki,

My son is battling NB right now too. I found this blog a month ago and come to it often. My sons primary orginated in his right adrenal gland as well. It sucks to deal with this, but I share your feelings of frustration and despair and on the other end, hope and faith and that sense that I'm closer to my baby than ever before and that this time is so precious!

I pray for Toby and for your family as well. I hope that your next consultation will give you an answer to what direction you should proceed now.

With love and prayers,

Heather MacDonnell (Dallas, TX)

Anonymous said...

I read your title as "cancer is a blessing... compared to something worse." I can't imagine the terror you and your family have known these past 9 months, nor can I imagine the horror and grief that your friends now know upon losing their daughter. My father died suddenly some months ago and I never got to say goodbye. The only good part in all of that was that he didn't have to suffer; in all other ways, I was so angry that I never got to tell him one last time that I loved him, that I was proud of him, that I would never forget all that he had taught me. I imagine that the days you spend with your son are days which you drink him in precisely because you are fully aware of how precious and how fragile his life is right now. Of course, it would be so much better if he didn't have cancer; your father is also right to be angry at a disease that does what it does. How can we not be angry at the things that take those we love away from us? People hate hurricanes, floods, tornadoes for those very reasons. But I think you are also right to see every bit of good that you can see in this experience; not because you were meant to learn from it, not because God has been testing you or giving you what you can handle, but because the way in which you deal with a life-changing experience like this affects you and everyone else around you greatly. I am the type of person who spends a lot of time being angry at the things I cannot control. I have spent a lot of hours since my father's death in anger. While I fully understand that it is my personality, I sometimes wish I could have spent that time more productively, more focused on the time I was able to spend with him. I pray for Toby and for you and your family, and I pray for your friends as well.

Anonymous said...

I am so happy for you Toby. We have been praying for you. Love always sarah jo and family

Sari said...

Mooki,

I continue to be overwelmed by your ability to see some positives during this 9 months of unimaginable difficulty.

I am so pleased to hear a bit of good news about Toby and will continue so say the Mishaberach for him each Shabbay.
-Sari Fensterheim (Bronstein)

Sarah said...

(sorry if this posted twice - I can't tell if I did it right the first time...)
Mooki,
I just stumbled upon your blog again - was planning on looking back in the comments of mine to find it. I have been wanting to check up on Toby, and am so happy to find that he is doing well. I am sorry about the HAMA, though.

I have been wanting to contact you since your comment when we found out that Ellie's NB was worse. I was so glad to see you that day and be able to just "chat" about the little things because I was working so hard in that moment not to cry in front of Ellie. Had Ellie not been with me, I would have told you what was going on. But all I could do in that moment was hold on until I could get away. I just wanted to tell you that visiting with you was such a welcome relief for me...

Anyway - I will be praying for Toby. I also echo your beautifully written sentiments about the blessings of the connection that cancer can give us to our children. I had some of the most precious moments ever with Ellie because of her battle with NB.

Sarah

Anonymous said...

First, I am thrilled that Toby is enjoying school, friends, and new hair. I know you have difficult choices to make with his treatment, and I pray that God guides you to the best options for Toby.

I'll try to keep this short.

In my gut I agree with your father. Cancer IS evil. As we and/or the people we love are afflicted with its various forms, we try to reason it away into a manageable corner: He smoked; she never took care of her body; he worked at the chemical plant for years; maybe God is testing me; maybe He is punishing me for _____.

NONE of these pathetic excuses work for pediatric cancer. Toby and children like him haven't had the chance to harm themselves or others around them. These sweet, beautiful innocents are facing death and enduring awful treatments just so they can survive and be kids again. It is nothing short of cruel and unfair and EVIL.

I do not believe God would afflict our babies to teach us grownups a lesson of some sort.

This is where my heart agrees with you. My heart understands why you wrote "Cancer is a blessing." The act of finding and carefully plucking those hopeful pearls from the pain and fear is what keeps us fighting. It keeps us sane.

You wrote in an earlier comment that you're not a "positive person." I think you are. You are combing every inch of this ugly battle and finding something good to cherish. Seeking the good and holding it to the light for Toby to see fuels his hopefulness and keeps him fighting.

Even more than we, Toby needs hope and a desire to win his battle over evil. Fortunately, his willing child's heart is always open to accept hope, and his family's loving encouragement will keep him fighting.

May God bless all of you with a swift victory over NB.