A tornado of letters and words and feelings have been in my mind for months now; too chaotic to process the whirlwind of our recent experiences. Thoughts, emotions swirl like a dust storm inside of me. But that dust is settling as we return to the rhythm of our life and embracing the joy in each day.
In September I sat in the office of a neurosurgeon, one I trusted and respected, the same woman that had placed Haley’s VNS implant years ago. Somehow I felt that hers were the only hands that should be trusted with what we were considering.
Years ago, after several “clean” MRI’s but our epileptologist’s insistence that Haley’s EEG looked dysplastic, we opted for yet another MRI as her brain matured, and we found it. A focal cortical dysplasia in Haley’s left parietal lobe. fMRI and MEG scan showed multiple seizure focal points throughout her left hemisphere though, and we were reluctant to endure surgery when the best possible outcome was likely slightly fewer seizures.
In the past several years however Haley’s decline, both in cognition and quality of life, was rapid and significant. It was time to revisit that option, re weigh the potential outcome, look at new technology and re decide armed with more knowledge.
In preparation last February Haley spent a week inpatient gathering new Video EEG data and undergoing new imaging. Later she also had a new PET scan. The consensus was that the dysplasia seemed the most likely culprit.
I hoped for laser ablation. Minimally invasive in terms of incision and recovery. In that meeting I was informed succinctly that it was not a viable option. The size and shape of her abnormality did not lend well to the technique and the edges of her dysplasia were not clearly defined. The VNS makes higher resolution imaging inaccessible. A traditional craniotomy and resection was offered and suggested.
The question became whether to do a 1 part resective surgery and just remove the dysplasia under the assumption that seizures would resolve if the physical deformity was removed, but the danger was that it was very close to the language epicenter of her brain and we risked a significant loss of language skills. Or a 2 part surgery to place internal grids and strips, monitor the seizure activity for 5-7 days, do some function mapping and then remove the offending areas.
Haley suffers from a sense of trauma with anything hospital related. Who can blame her? A significant portion of her childhood has been spent there. We opted for the single surgery to remove the dysplasia to minimize the emotional impact to her. With her cognition declining so rapidly our trusted surgeon cleared a day and we set surgery for a rushed 2 weeks later.
I prepped Haley in the best way I could. Trying to accurately explain the procedure and possibilities in language she could understand, to abate fear, to offer hope but not false promises, and to reassure her that she was perfect with and without seizures.
Surgery day came and we were all filled with hope and fear. We distracted Haley with chapstick flavors inside of her anesthesia mask to mask the harsh smell of the gas that would put my baby girl to sleep. She decorated her mask with stickers and happily played her iPad as we waited for her turn, alternately seizing and charmingly making everyone laugh as she regaled exploits of her pets to the myriad medical professionals that came in. Hope was high and the atmosphere was festive.
I suited up and accompanied her into the OR. She clutched her special Boo boo bear and I did my best to alleviate her fear, knowing it could never be abated. My baby girl laid flat on the OR bed and the anesthesia began pouring into her mask. She fought it slightly, the harsh smell and that feeling of suffocation. And she started seizing. I was told to peck her goodbye quickly and whisked away holding her bear in arms that ached to hold her.
Walking out of that room, leaving my baby girl unconscious and seizing was one of the most difficult moments of my life.
My sister and I waited together. Nervously pacing the hospital halls. Her coaxing me to eat. Every hour an OR nurse would call with an update. 1 call. 2 calls. 3 calls. 4 calls. 5 calls. 6 calls. 7 calls. 8 calls. 9 calls. Finally the last call- they were closing. We could meet them in the PICU waiting area in about 1-1.5 hours.
As they transferred her from the OR to the PICU, assessed and awakened her our surgeon, Dr. Duhaime, came to see us. She assured us everything had gone as planned. Dysplasia and brains do not look as we imagine, the folds are not clear in a live human brain and she relied on image guidance to remove as much of the area as they could. She warned us that it very likely impacted her language function and she worried aloud at the extent of loss and small likelihood of recovering it. Then she briskly walked to assess my girl before we would be admitted to the room.
In those minutes the NP, Jess, that works with her (who often distracted and amused HALEY with her gentle, playful tactics so we could discuss logistics) came rushing in. “She’s talking normally! She can follow multi step directions without visual cues! Her language seems FINE! Come see her!” That was a moment of celebration, relief, and reward after a harrowing day.
Haley was, as expected, in a lot of pain but good spirits. She ate the snacks provided, opened gifts and face timed friends after 11 hours of brain surgery. My girl was her fiery, fierce and funny self. But she was also seizing. And they looked the same. 1 seizure. Then 2. Then 3 within hours.
I had been prepared for this. Seizures post surgery, even successful surgery, are common. The trauma and agitation to the brain cannot be understated. I held onto this logically. But I was devastated.
I clung resolute though that regardless of outcome this WAS the right decision. I could not look into my baby girls suffering eyes any longer without knowing that I had done EVERYTHING possible to help her. We had hit our point of last resort.
But Haley continued to seize at exactly the same rate as pre surgery. We were so grateful to have no apparent deficits, but no one was prepared for no seizure improvement at all.
Haley was scheduled for a new MRI to see if there was a brain bleed or piece of the dysplasia that was missed. Perhaps the image guidance had been off by fractions of a centimeter and some dysplasia remained.
The MRI showed nothing. Except. The neuro-radiologist noted that close to the original dysplasia was another “fuzzy” spot. Even less clear. Even closer to language.
Dr. Duhaime stood in the hall with me. In her eyes I saw a strong, capable, brilliant surgeon. But more than that professional mask, I saw a woman. I saw a Mom. I saw genuine care and concern for my daughter. And she said to me “I think I want to get back in there before scar tissue forms. Any other surgeon would say to let her heal and see what happens. That another surgery now would be crazy”. She looked at me and said “I don’t know what to do. My desire to help Haley is clouding my judgement” and I’ve never been so moved by another’s love for my girl. We decided that Haley’s medical team would meet as a group and make a recommendation.
Our epileptologist Dr. Thibert called in while on vacation. A neuro-radiologist we never laid eyes on came on his day off. The surgical team gathered. And we decided to schedule the 2 part surgery for the following week. But let Haley come home in the meanwhile.
The next few days were rocky. Rollercoasters of emotions and seizures. Doubt and uncertainty and questioning our every decision coupled with Haley’s disappointment and pain. I felt guilty for trying to spare her the 2 part surgery only to have to now endure that. The day before the second surgery, with Haley seizing but defiant and scared and outright refusing to return to the hospital we made a game time decision to give her another week. Everyone was concerned about 3 administrations of anesthesia and 3 traumatic surgeries in such a short time.
Haley was ecstatic for a reprieve and decided that she wanted return to school in the interim. That girl is the epitome of brave and resilient.
The week passed and with grim Groundhog Day like familiarity we showed up for surgery #2. Haley was uncooperative. Fighting everything. Sassy and spirited and stubborn. It’s more difficult than listless and compliant but I’ll take that fiery spirit any day.
I again walked behind the gurney to the OR. This time she went to sleep with no complications and because it was only the placement of grids and strips the surgery only lasted 5 hours.
Dejavu set in as we did the same laps, waited in the PICU waiting room and then reunited with my now tethered girl.
She spent several days with her head swathed, wires protruding from her skull and tethered to the machine that monitored her brain from the inside out. We worked to eliminate infection risks. And struggled to entertain and cheer a physically and emotionally hurting, frustrated, traumatized girl.
We created a poll asking whether ladybugs bite and it became a big debate as we tallied responses. We had the best PICU team ever with an attending physician assisting myself and a nurse with a bed change after an unfortunate bed pan mishap. That same physician painted his nails in a ladybug pattern and drew her pictures of lady bugs with teeth that looked suspiciously like termites.
Child life helped fulfill her requests for slime and crafts. Friends showed up with gifts and hugs. Days passed. We wanted data, we got data. 15-30 seizures/day of data.
That data showed that the almost indiscernible spot on the new mri was indeed another dysplasia. We decided to do some deep brain stimulation to try to do some function mapping and see what outcome we might be up against. They stimulated one area as Haley successfully repeated simple sentences. They stimulated another probe in an active area and again Haley smoothly kept on task. They stimulated another very agitated area and I saw a look of sheer panic cross Haley’s face. Frozen. Terror. Indescribable and undeniable. She could not speak or comprehend to follow a direction. We started again. Area 1. Area 2. Area 3. Same results. We could remove the offending tissue in the first 2 active areas but touching the 3rd would unequivocally mean a complete loss of language function.
We prepped for surgery. We waited for hospital time with delays. Haley melted down. It was too much, too many asks of a young girl who just wants to live a life outside of hospital walls. The compassionate anesthesiologists came to her room and sedated her for the gurney ride to the OR this time.
So many hours later my girl emerged. Awake. Speaking. And still seizing.
I held myself together in front of her but after I settled her in to sleep and seize I sobbed. Heartbroken. Devastated. Hopeless.
We were released 24 hours after her third brain surgery in 3 weeks. The team confident in my ability to care for her at home and her resolution that she needed to go. Life was waiting.
In the days that followed we observed that her seizures seemed to have lessened in strength. And reduced by about 50%. She was averaging around 10/day but she was no longer incontinent with every one.
She returned to school less than a week later. Incision still bearing stitches and a large bald stripe testament to the healing that had just begun.
It’s now been over 3 months since that last surgery. True to counsel Haley has continued to improve. She is now averaging around 5-7 seizures daily with only about 1/2 of those being convulsive. Her cognition is improving. There is fuzzy hair regrowth along most of her incision site. She’s even had a handful of seizure free days! We hadn’t experienced the glory of that in nearly 10 years.
*Edited 2/12 to note how quickly things change. In the span of a week Haley has lost a significant amount of the improvement that she had gained from the surgeries. Epilepsy is nothing if not unpredictable.
The dust is finally settling. The tornado of thoughts, rapid fire hard decisions and raw emotions and impact of that are no longer engulfing and all encompassing. And while the seizure storm in her brain continues at least we’ve provided an umbrella. And believe that there’s sun behind the clouds. New treatments, new options, renewed hope in the present and future. And the consistent theme that life is fragile and short and we must seize every moment and live with the knowledge that tomorrow is only a possibility, not to be taken for granted.
Live for today. Love for today. Face the storm.
Footnote- I can’t begin to express our gratitude for our team at MGH. From Dr Duhaime who was brave enough to care for my girl, and Jess for her patience with her to the cheerful child life specialist and the PICU team. Dr Bess for the stuffed pig with the curly tail that made Haley smile on a day that nothing was coaxing cheer. To every medical professional who answered our lady bug poll and engaged with and saw a child not just a patient. To our long time epilepsy specialist Dr Thibert who has been a voice of steadfast support. To our friends, family and online epilepsy and cannabis communities who sent flowers, gifts, prayers and love.
I’m humbly, overwhelmingly, indescribably grateful. I’ve never felt more supported by a village. The outpouring of love for my strong willed, sensitive, resilient girl is appreciated immensely.