Choroid Plexus Papilloma

The pathology report is back, and we finally have a name for our enemy:  it is a choroid plexus papiloma. Our road has taken a sudden and unexpected turn- no, this is not a cancer.  It is not a carcinoma.  It is what is called a “benign” tumor, though I use that word with a sense of angry irony.  There really is nothing benign about this thing.  

It is actually a rare, slow-growing tumor found mostly in very young children.  It may have been with Jack since day one for all we know.  If you were to look up the prognosis on such tumors, you would find the results of your search to be encouraging.  When removed, patients recover with very good results.

But.

Jack’s tumor, as I have noted before, is extremely large.  Worse, it is located, at least in part, in the brain stem.  When Dr. Walter told us this, I found myself instantly back in PSYC101, remembering that the brain stem controls the body’s major autonomous functions.  Things like heart function, lung function, and yes… swallowing, gagging, and coughing.  Dr. Walter told us that choroid plexus papillomas are usually “a big yawn” surgically.  But in Jack’s case that is absolutely not true, due to the size and placement of this tumor.  The last thing you want to hear is that your son’s case is “challenging”, and “not straightforward”.  Dr. Walter has been researching and talking to colleagues, looking for any information on chemotherapies for this kind of tumor in the hopes of shrinking it down prior to surgery.  Since it is not fast-growing, chemo will not work, and Dr. Piatt doesn’t feel that Jack has enough time for us to wait for a few rounds of chemo, even if that was an option.  

Additionally, this tumor is living tissue, with a blood supply.  Thus, the surgery carries the same risks as last week’s biopsy- it is likely to hemorrhage, resulting in significant danger for Jack, and precluding the option that only part of the tumor might be removed, leaving the part near the crucial nerves alone.  

We have just returned from a meeting with Dr. Piatt, Dr. Walter, and the main players on the PICU team, which John and I had initiated in order to fully understand what we are up against.

What we have learned is that surgically, Dr. Piatt feels that the best plan is going to be to get in there, and get it out.  All of it.  Immediately.  The risk of permanent nerve damage to certain areas is extremely high.  Thankfully, the areas likely to be damaged are NOT the areas controlling heart and lung function, but rather facial nerves, hearing (on the right side particularly) and the nerves controlling muscle function in the vocal chords and throat.  

Imagine not being able to swallow.  Feeding becomes impossible, of course, but any saliva you have will just pool in the back of your throat and eventually find its way down into your lungs, where it absolutely should not be.  The only way to protect Jack’s airway if these nerves are damaged will be to insert a trachial tube.  And the only way to feed him will be to insert a feeding tube into his side.  

So, Bounce Back Jack’s journey has shifted from an expectation of a long and uncertain battle with cancer to a long-term, likely permanent disability.  However, Dr. Piatt indicated that there is hope that through many therapies, Jack’s brain may be able to compensate somewhat for the damage.  He may regain some functions that he will have lost.  Where there is life, there is hope.

What I feel right now is an overwhelming sense of fear about tomorrow’s surgery.  While the prospect of a serious disability left me feeling unsteady initially, that has passed.  If Jack pulls through this, we will work hard to make sure that he will have a joyful life, which is exactly what we were planning to do before any of this happened.  Nothing will really change but the details.

I’m going to try to live-blog tomorrow, with updates every hour until he is out of surgery.  Surgery is expected to begin around 7:45 a.m.  I’m also going to ask everyone who is lighting a candle for Jack, or who is keeping him in your thoughts, to keep those thoughts positive and to keep those candles brightly burning tonight and tomorrow.  The surgery will determine everything.  

We would never be able to handle this without your love and support, everyone.  Thank you all for being on Bounce Back Jack’s team.

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14 thoughts on “Choroid Plexus Papilloma

  1. Pingback: March 6-7… Lots to report! | mggrotti

  2. MN

    Thank you for posting such thoughtful updates and keeping us all informed! I don’t know how you are able to continually find the perfect words but I appreciate getting to know Jack through this blog. The college I attended had a seminary, so several of my friends are now priests and have been praying for him at their masses and so many other people I know are sending prayers and good thoughts your way. One of them even said she’s praying despite being an atheist so she thinks it counts for extra! You are a tough family and we all hope for the best for you! Will keep the candle burning tonight.

  3. John - Jack's dad

    Just had a scary 2 hours with Jack. He started spiking his heart rate and dropping his o2 saturation. They dumped a ton of sedatives on him and kept having to bag him back up to appropriate saturation levels. Chest x ray showed breathing tube touching carina. Pulled tube out 1cm things are now stable. Jack is throwing curve balls right up to game time. Thanks to all for the love and support. He is in good hands tomorrow.

  4. Carol Frost-Cyrus

    Dear Baby Jack,
    You are a courageous little fighter. I lift you up in prayer to our loving Father who created you. I pray for Him to strengthen your little body for this and through this surgery; for wisdom, clarity and steady hands for the doctors and their team of nurses and all assistants; for peace and comfort that surpasses all to descend upon your family and for God’s protection over all. With love and in prayer, Carol (Aunt Jill’s sister)

  5. Michelle Lin

    I hope that this surgery taking place tomorrow will go well for jack and his whole family. My thoughts and prayers are with you and I truly hope that jack will be okay. Go Jack!!!!! We’re all rooting for you!!!!!

  6. Liz Dringoli

    My thoughts and prayers are with you, your family, and little Jack tonight. I’ll be thinking of you tomorrow, and hoping that all is well. We’re all rooting for you Jack!
    Love&Prayers from CT.

  7. Jill Gaffey

    Dearest Meg and John- I plan to be in church at 8 am in the morning and will be lifting Jack, all of you and the medical team up in prayer all day. It will be the longest day of our lives but we know how powerful prayer is and are personal witnesses to the fact that miracles do happen!
    Love and Blessings, Aunt Jill and Uncle Bill

  8. smccoy

    Your work family will be rallying tomorrow, together and close to a computer! I’ve never been so happy and terrified for you at the same time with this post. You are amazing parents and will continue to be amazing parents no matter what.

  9. Vicki and Fred Keogh

    Hugs and prayers from Wisconsin (and apparently from all over the world!) Thank you for taking the time during what is such a stressful time to post the pictures and write the stories about Jack and Sam. They are such beautiful babies! We wish you all well.

  10. John Oxford

    Don’t worry we are all in for as long as our support helps. My 23 years as a medic allows me certain understanding that Doctors in cases like this present somewhat of a worst case scenario. Not to infer Jack’s condition is not very serious. It is time to shift our prayers to the surgical team that they will do the absolute best they can. My prayers for Jack tonight will certainly go in that direction. We wish you all well. You must be exhausted. I will tell you I waited all day to read your blog. Thank you for sharing. Oh yes, there will be no “LEMONS” tomorrow. J

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