Medical Update

Good afternoon friends and family,

On Wednesday morning, Zoe, Grammie, and I headed to Boston in the wee hours and watched the sun rise. Zoe was in great spirits, had just the right temperature (no fever), and enjoyed being wheeled around by Grammie throughout the waiting room.

Every time Zoe goes in for a procedure, we have to sign one form after another and quite typically hear, “It’s extremely uncommon, but we need to tell you about these possible risks...” Well, the phrase, “extremely uncommon” gives me no peace since Zoe’s brain tumor diagnosis is also “extremely uncommon.” I signed the forms, and accompanied Zoe into the OR until she went into a sleep state. She had a portacath put in her chest, a bone marrow aspiration biopsy, an external ventricle drain in her head, and then a lumbar puncture with chemotherapy.

Some of you may be wondering about the drain in her head (EVD). That’s a new development. Here’s the scoop: The MRI Zoe had on Friday, Sept 30th, showed an increase in brain fluid from the last MRI. This could definitely explain the regression and increased sleep time that David and I had observed in Zoe starting earlier last week. We would not have had an MRI on Friday had David not relayed some of his concerns to Dr. Goumnerova, Zoe’s neurosurgeon. Just goes to show how important it is to be incredibly proactive. Dr. G. opted for this external drain rather than a shunt since the shunt can introduce cancer to other parts of the body. We’ll see if this drain resolves the issue soon enough, or if Zoe will have to have a shunt placed next week.

After the surgeries on Wednesday, the EVD neurosurgeon, Dr. Lissa Baird, talked with David and in their conversation it was revealed that last Friday’s MRI also showed three or four lit up areas that typically indicate the presence of cancerous cell clusters. We were shocked that no one mentioned this to us anytime in the last 6 days, especially since I asked the oncology fellow point blank on Tuesday whether Zoe’s increase in brain fluid could be caused by cancer growths in her brain and he gave no indication that cancer was present. He said it was likely that the body was not absorbing the fluid as quickly as we had hoped. I asked if we should get a second opinion on reading the scan since he kept saying how he wasn’t a radiologist. I should have formally request one. We also found out yesterday from an ATRT expert, Dr. Susan Chi, that it’s possible that Zoe’s brain isn’t quite where it’s supposed to be, that, perhaps, parts of her brain are squished due to the increase in fluid.

So, Zoe had an MRI on Friday the 30th that showed an increase in fluid and very troublesome lit areas. David and I met with doctors ALL DAY on Tuesday, October 4th in the Pre-Op Clinic and NO ONE mentioned the results of this scan. We saw oncology, endocrinology, general surgery, and had an hour long interview with a nurse. I talked with the oncologist Tuesday night and inquired about the presence of cancer. I met with the whole team right before the surgeries on Wednesday, asked again about the cause of the increase in fluid, and heard from our attending oncologist, “Well, it doesn’t really matter what caused the increase in fluid, this is how we’d treat it.” Well, that, again, would have been a good time to talk about the state of Zoe’s brain. Even if the cancer cell clusters were not the cause of the increase in fluid, I think there were a great many opportunities for the doctors to address the MRI results.

Zoe has been accepted into the Proton Beam Radiation Program at MGH. Today I had an hour long conversation with MGH’s radiation oncologist administrator for the pediatric group (the woman who assists Dr. Karen Marcus, the Chief of the Division of Radiation Oncology at Massachusetts General Hospital). I expressed that Zoe’s parents definitely want to be fully informed about the results of every scan henceforth, especially since performing radiation on Zoe could have very long-term negative consequences. She was very interested in last Friday’s scan an indicated that she had not yet received a copy of it or the report, but that she would look into it. We talked about the Program and she said that the team only accepts those patients for whom a cure is possible with the Proton Beam’s help. This program is not available for patients the doctors think will not survive or for whom the cost/benefit ratio is too lopsided.

It’s likely that radiation would combine with chemotherapy mid-November. We pray that we would have divine wisdom in pursuing treatment, and that we would see our way through all of the treatment and logistics that have to happen between now and then.

David has been walking Zoe through her first 48 hours of chemotherapy in the ICU at Children’s Hospital. It sounds like Zoe was in pain after her surgeries and needed morphine Wednesday night and oxycodone Thursday and that she hasn’t been able to take in or keep down much in the way of sustenance. She woke up this morning in good spirits, which is impressive for a toddler who needs to lay flat all the time due to the drain in her head.

David sent the famous “fist pump” photo to Dr. Baird and thanked her for her devotion to Zoe. She wrote in response:

Hi David,
Thank you for the picture. She certainly is an amazing little girl. I am constantly in awe of the kids we get to take care of and how strong they can be. And not every child manages to be as gracious and cheerful as Zoe! I hope this coming week won't be too hard for her--she certainly has a great family to help her through it.

Lissa Baird

It gives my heart a great deal of peace to know that Zoe is with her hero. Daddy knows just how to make Zoe feel like anywhere is home. She knows all is well, even if it is foreign or painful, if Daddy is by her side. I’ve been here with our 12-pounder, Cam, and with David’s parents. Grandpa, Cam, and I are off to CHB now to visit Zoe and David and deliver homemade food and diversions and lots of hugs and kisses. Depending on how Zoe is doing, she may remain in ICU, or she may be moved to the neuro floor of CHB sometime in the next few days.

Receiving your encouraging emails, snail mail, and phone calls/texts is empowering. Thank you for your prayers and trips to the grocery store for us. Thank you for cleaning our home and taking our dog, Bella! My in-laws are thoroughly, genuinely impressed with how you have been the hands and feet of Jesus in this crisis for our whole family.

I’ll send another update when I’m able.

Love and gratitude,
Catherine