Whac-a-mole

My brain wants to shut down and my body wants to give up. I can’t make them connect right now and despite trying to keep afloat with humor and a “we’ll beat it again!” attitude, I’m concerned that I’m running way too far past empty to keep up this charade.

For those of you who don’t know, Ben has relapsed again. SIX times my son has battled this insidious fucker. I sincerely don’t know how he keeps going. I truly don’t. He continues to be so brave and strong. And while I try to keep a brave face a lot of the time, well, I’m just out of energy. My emotions are completely exposed like raw nerve endings most of the time.

I noticed right before we left for NYC that Ben had turned a picture of himself around to face the wall. This picture showed his wonderful and insightful smile, those deep and knowing eyes, and a completely bald head. He looks that way more often than not but he had reached a point where he was tired of looking at that image. He admitted that he was the one who had turned it to face the wall because he didn’t like looking at himself when he looked like a cancer patient. I honored his request and took it down because I just don’t ever want him to feel unhappy. Besides, we were in the throes of an amazing winning streak against cancer. We felt the vaccine was working and was even scheduling an appointment on getting his port removed when we returned to Denver. THAT was an epic milestone! To not need his port any longer was thrilling to me… and to him. However, we all know now that port removal won’t be happening anytime soon.

This trip to NYC was a regularly scheduled visit. He needed injection #5 of the vaccine and a set of scans. My sister came in to NYC for the day, so we were sitting together on the plastic couch in the waiting room while Ben was undergoing his bone marrow biopsy. I usually stink at having people sit with me during procedures because I seem to be more comfortable in my own head. It’s no news that I’m an introvert and tend to want to handle things on my own, but having her there was really nice. So, when I heard Dr. Kushner talking about Ben Brewer, I turned to wave him over to us. After a brief introduction to my sister, he simply said it: “There’s a new spot.” As that information was trying to penetrate my brain, I worried about how I was getting ready to lose it in front of every person in that waiting room. I kept nodding my head and trying to listen, hoping I was catching what needed to be caught, but everything was buzzing. And I was sincerely worried that I was going to scream right there in the middle of that busy waiting room. After the news was delivered, we were able to go into an office where I did lose it.

Now, I’ve been doing this for a long freaking time. And maybe I should be used to hearing that my son’s cancer has returned. But let me make this very clear: I WILL NEVER BE OK WITH CANCER ATTACKING MY SON. Not the first time, and not the sixth time. And if there’s another time, I won’t like it then either. I understand that I’m “old hat” at this, but it never gets easier. NEVER. And I am offended by people who have said “Oh, it’s just one little spot” which, I shit you not, is what one of the nurses said to me.

Fuck that. ANY cancer attacking my son WILL NEVER BE OK.

NEVER.

So, they gave us a plan right away. And being the compliant person I am, I agreed. Of course, this was all done with Ben’s consent, but my thought was get that cancer out of there NOW. Surgery was scheduled for two days later and a whole extra shit-show of incompetence happened after that. I am not going to go into details here but let me say this: We have officially broken up with Memorial Sloan Kettering for treatment.

This makes me terribly sad. In 2010, Dr Kramer, who was heading up the relapsed neuroblastoma study at MSKCC said the following: “I believe your son is curable.” It was what I had been waiting to hear for years. And, for some idiotic reason, I believed her. I hung a lot of hope on those words. Now, seven years after that initial relapse and giving this institution chance after chance after chance to treat my son with some dignity, since he relapsed on their “Holy Grail” of therapy, there’s no need to continue. It just doesn’t make sense.

On our flight home, Ben leaned into me and said “We travel here to receive CARE. It seems pretty clear to me that they don’t care about me. I’m just a number to them.”

We got home on a Friday night. Ben was coughing quite a lot, which could have been his lung’s way of trying to get stronger post surgery, but since it persisted through the weekend I took him to Denver Children’s Monday morning. We met with Flori, his usual nurse practitioner and SHE HAD NO FUCKING IDEA THAT BEN HAD RELAPSED! She didn’t know that he had surgery over a week ago. She had no information. So I had to explain where it was found. I had to explain the procedures he had just had. I had to explain what the next steps were. I had to call MSKCC to get the records transferred. Of course, I was sobbing throughout the entire ordeal because WHY WOULDN’T THEY HAVE THE COMMON COURTESY TO LET HIS HOME HOSPITAL KNOW WHAT WAS GOING ON????

Dr. Macy came in to talk with us and was very frank. She asked why we would return to receive a therapy that didn’t work. And given all the stuff that went wrong during that visit, why would we want to keep taking on their inability to offer my son any quality of life.

And that’s what shocked me into understanding. They don’t expect him to have any quality of life. Ben said, “They’re probably just surprised that I’ve lived this long, so they just throw whatever they can at me to see if it works.”

Does Dr. Macy think the cancer will return again? Yes. She expects it to keep popping up here and there for the remainder of his life. And then she threw in the “whac-a-mole” comparison, meaning that whenever it does come back, we’ll hit it with whatever study is available. Keep beating it down whenever it shows its ugly head.

We’ve also learned that the radiation therapy they were planning in NYC was nothing like what the radiologist here in Denver would do. NYC was basically going to throw five big doses at him, where Denver said it would be safer to do a lower dose over 12-20 visits. Glad they forced us to get a second opinion.

I don’t know what’s going on there. And if they do eventually find the golden ticket that cures neuroblastoma for good, then Ben will be able to receive it. They can’t deny him treatment just because I’ve called them on their incompetence. But I have to say that I am highly distressed. It’s taken me almost two weeks to be able to say anything at all. I’m feeling very defeated for a variety of reasons.

I’m sad that this “lifeline” didn’t pan out and did more holding us under water than trying to keep us afloat. I  cannot say this has been everyone’s experience, and I’m sure there are plenty out there who are extremely satisfied with their experience at this institution.

Good for them.

But, for now, we’re going to navigate treatment here in Denver.

We’re home.

12 thoughts on “Whac-a-mole”

  1. Sarah, I am so sorry you and Ben have had this experience at Sloan Kettering. Some medical centers seem to be good at providing quality care and others not so much. If you and Ben have a better experience at your local hospital I say go for that. The doctors there can always consult with other centers if that is needed. If they feel going to some other place might be helpful I am sure they will make a referral.
    As for your feeling the stress and frustration with all of this, I will simply say, I understand your feelings. Also if you need to scream, then scream. You have reasons. How you cope each day with this is hard for someone not in your shoes to understand.
    I wish I had something more helpful to offer but I continue to hold you and Ben in my heart and my prayers.
    I send love to you and your family.
    Melva

  2. I so envy you, that you have your writing to express yourself and get all of the words running around in your head Down on paper. And it’s always so beautiful. I love you, love you, love you, and will do whatever I can to bring some calm and peace in your life.

  3. I am not sure how you keep putting one foot in front of another…it IS beyond TOO much….for you as well as Ben.
    You are ALWAYS in my thoughts and PRAYERS.
    Truly you and Ben have my admiration and what I find most inspirational
    Is that you each and together are REAL
    Not Pollyanna Goodietwoshoes…
    The is a more difficult journey than most of us can even begin to imagine let alone understand.
    It is unfair in more ways than a lifetime of sentences might express.
    The raw courage you demonstrate is mind boggling.
    Thank you for sharing.
    Than you for being real and true you yourselves.
    I am grateful.

  4. I’m so sorry that Ben has been made to feel unimportant. He means a lot to us. Denver sounds like a better fit for him. Keep your Chin up Sarah…we continue to pray and make donations for research.

  5. Welcome home my friend—-there’s so much love here from so many who only want Ben to be ok and you and Maddie too—I haven’t got a clue about what any of you’ve been put thru—but just please know I still pray every day for Ben, and I care.

  6. As I type this, tears are streaming down my face. Don’t hate me, my son was diagnosed with neuroblastoma at 1 day old. Chemo at age 10 days and surgery at 3 months. He will be 21 years old in August. Chemo has taken it’s toll on him with cognitive challenges having received chemicals at such a young age for the first three months of his life. At least he’s mine, I have him. I’ve seen others who weren’t so lucky.
    Your blog is like a chapter in my life for some reason I was so fortunate and blessed to miss. My heart break for what you are going through. In those first few months I never thought he would make it. The cancer wasn’t going to kill him but the treatment almost did on several occasions. I am reading your words and your emotions ring so clearing in my head. I know how it feels to hear the words from medical staff that make you go weak in the knees or want to fall to the ground and sob. I know the feeling of wanting to take your son and just run away from all of the pain. My heart hurts for you. Ben is so brave and I pray for a cure, a break, remission that lasts…anything. Hugs to you Momma.

  7. Dear Ben’s mom,
    I wept as I read your message telling us all of the failure of the treatments in N.Y. It is heartbreaking news. I have followed your family’s journey through Ben’s awful illness for a very long time. I’ve always felt and reflected your strength, hope, and positive attitude about it knowing that’s what sustained you and him.

    Now I hear defeat and brokeness of spirit in your message. My heart aches for you all. You will remain in my thoughts and prayers as you move through this most difficult of times. May you all be comforted and strengthened by the boundless love that I and others in this community of care that you’ve created are sending to you.

    I’m a person of faith. I’m convinced that each of us is cherished before, during, and after our earthly lives by a higher power that many call God. Heartfelt communication with that power calms, strengthens, and restores me at the worst of times. You are in the depths of the worst of times. Even if it may be new to you, I encourage you to trust that, that power is available to you and Ben to provide a deep sense of love, peace, calm, and assurance that you are and will be supremely cared for always no matter what.

    Having said that, I will pray each day that the new spot is eliminated quickly and that you, Ben, and Maddie (?) will continue to have lots of opportunities to smile and share pleasant, loving times together.

    Donna Coolidge
    Santa Barbara, CA

  8. Oh my friend I’m so very very pissed off for you and Ben !! Yep he is not what they need to show off that they are the best Hospital!! Ben is so right , he is just another number to them ! A number that didn’t work for them !
    When Leah relapsed with GBM Brain cancer , I tried to get her help wherever they offered new trials for recurring brain cancer !
    We were turned down everywhere! Even the famous St .Jude hospital said no to us ! She was doomed to die in their eyes ! She would not have been a success story in their book so they didn’t even want to look at her !
    We had send all her medical files to Memorial Sloan Kettering hospital for a second opinion before she even had relapsed, never even heard back from them
    My heart hurts for you so very much !!

  9. I am glad you both are home and hope Ben gets better care and treatment in Denver now. I’ll keep Ben and you in my thoughts and prayers and am so sorry to hear the problems he and you are going through. Please stay well so you could be there for Ben. Your all in my thoughts and prayers every night xo

  10. Strong writing. Strong family. I’m sick to hear Ben relapsed again, Sarah. My love and any strength I have that can travel through the miles go out to you. I’ll pray Denver treats you better, and it sounds like they do.

  11. Sarah, I tried commenting earlier and have no idea if it went through as I’m new to Twitter. I’m sick from the news of Ben’s relapse. Please know I’m sending love and strength to you all from across the states and will be thinking of you.

Leave a Reply

Your email address will not be published. Required fields are marked *