It all started with two words.
Way back on December 11, 2014, when Susan's pediatric sports medicine doctor (who specializes in spinal injuries) called me to tell me that Susan's MRI showed a stress fracture in her lower lumbar spine (which was likely the result of her training as a competitive figure skater combined with a weak core and the crummy timing of a growth spurt), she said something about an "incidental finding."
Struggling to take it all in...with realization dawning on me that when the doctor herself calls to tell you test results it is never good...I asked all of the questions I could think of. (The only other time a doctor has called to review one of my children's test results with me was the day Susan's pediatrician called to tell me he had never had a patient test as allergic to peanut as Susan had, and he asked me to go directly to the nearest pharmacy to pick up the EpiPen prescription he wanted to call in.)
I wasn't ready for that call.
I let the "incidental finding" roll over me, focusing on the treatment of the stress fracture, which was clearly the doctor's primary concern. The doctor told me Susan would need to be off the ice for (a minimum of) three months.
I could barely take it in.
Then she said Susan would have to wear a brace.
I hung up from talking to the doctor and berated someone working at the rink where Susan was skating -- on the ice while I was talking to the doctor -- into going and getting her off the ice. OK, I didn't really berate her, but, I was pretty insistent that she leave her position at the desk to go get Susan off the ice...and I'm pretty sure she's not actually supposed to leave...
As I drove, I tried to figure out how to tell Susan that her life was about to change.
My heart ached for her -- my strong, determined daughter who had stuck it out through a terrible, scary time in the clinical trial over the summer because of her dream of representing the United States internationally some day -- was going to have to be off the ice for three months.
(When things were the worst in the clinical trial -- just before Susan began receiving open-label Xolair injections -- I urged her to think about whether or not she wanted to stay in the clinical trial. We never wanted her to feel pressure to continue, especially when it was so hard. She looked at me steadily and said, "I can't (quit). I want to be able to travel." And while Greece and a Spanish-speaking Caribbean island are on her list, I know that what she really means -- her dream, which hangs out there largely unspoken -- is to travel to represent the United States as a figure skater.)
How do you tell a child that you are going to take away their passion in life?
How do you tell a child that you are going to take away the very thing that has been their driving force in life?
I didn't have to tell Susan.
By the time, I got to the rink, she was waiting for me, with tears in her eyes.
Later that week, when we saw the doctor, she mentioned the "incidental finding" again. I asked a few questions, but, let it go when she said she would refer us to a pediatric neurosurgeon in January.
It sounds dumb to me now, but, at the time, it really didn't seem like the "incidental finding," whatever it was, was that big of a deal. I wasn't worried, and I certainly could not have foreseen things unfolding as they have.
But, just for the record, an incidental finding is NOT a nothing.
I now know incidental findings are clinically significant, even if they do not necessarily require an intervention.
Susan started PT.
Susan was fitted for a brace.
She picked a cool color combination, and made the 23-hour-a-day commitment required.
Time crept, because, try as I have, the loss of skating has left a huge void. Three months is 12 weeks. That's more than 180 hours of not skating. It is loss of time with friends, coaches...a community.
Susan has been counting down the days until March 11, 2015, because, according to her doctor, she was healing well. Her physical therapist said she was getting stronger.
When we saw Susan's pediatric sports medicine doctor in late January, she gave us referrals to both a pediatric neurosurgeon and an orthopedist who specializes in curvature of spines (something else that had come to light as the result of all the attention on Susan's back).
The doctor casually said that the pediatric neurosurgeon might just watch the "sticky fatty tissue" growing on Susan's spine...or that he might just "do a quick surgical intervention" so as to prevent further problems.
While it took three weeks of doctor's appointments, assessments, consultations and information gathering, I can tell you that I knew, sitting there with Susan's pediatric sports medicine doctor back in January that we were headed for surgery.
I could just tell.
Putting on my social worker hat, and my experience as a "Lifecare Manager," I got Susan appointments with both the pediatric neurosurgeon and the pediatric orthopedist in record time. We learned that the "sticky fatty tissue" had a name -- a "spinal lipoma," and while the pediatric neurosurgeon was unwilling to make a recommendation during our first appointment with him, I could just tell we were headed for surgery. I had such a strong sense of it that I actually asked him if he would be able to do it so that her period of convalescence could coincide with her existing ice restriction. He assured us he could.
(As an aside, let me say that I am not a crazy skating mother. I don't NEED Susan to skate -- I don't even like hanging out in cold ice rinks, actually -- and I certainly don't NEED Susan to become an exceptional skater. But, I AM her mother, and I am acutely aware of how the loss of her passion, her friends, her community, has saddened her. For this reason alone, I want her to be able to begin skating again as soon as she safely can.)
As we were leaving the pediatric neurosurgeon's office after our first appointment, she said flatly and clearly "I'm not having surgery."
I reassured Susan that I understood, and underscored the fact that more tests and evaluations and assessments were necessary first. And then, because -- even without having learned anything more about a lipoma than what the pediatric neurosurgeon had shared with us -- I felt he was going to recommend a surgical intervention, I reminded her that he said he could get it done while she was still off the ice.
She just looked at me.
That night, I got educated. I learned that "incidental findings" are never "nothing." They almost always require a closer look. I learned that spinal lipomas can lead to a tethered spinal cord, which can cause very severe issues (loss of bowel and bladder function, paralysis, and worse). It became clear to me that if there was any evidence of tethering, the decisions to be made would not be about whether or not Susan would undergo surgery.
At that, I turned my attention from learning about spinal lipomas to learning about pediatric neurosurgeons. I reached out to my network of friends and college classmates and learned that Susan's pediatric neurosurgeon is very highly regarded.
I started thinking about peanut dosing in the face of surgery.
All the factors and variables were crazy-making.
I turned all the issues I could think of -- dosing day of surgery, stress on the immune system, possible drug interactions, how compromised Susan's immune system would be post operatively -- around and around in my mind...and as the minutes, hours and days passed, I became more certain than ever that if Susan needed a surgical intervention, I wanted it done soon, and I wanted it done at Ann & Robert H. Lurie Children's Hospital, where they know her.
Susan had a number of appointments -- assessments, tests, measurements -- all designed to gather more information to help her pediatric neurosurgeon make the best recommendation. And then we waited. And we waited some more. And I started to think that if a surgical intervention was needed, there would be no way to get it done soon enough that Susan's recovery would coincide with her ice restriction.
Susan and I talked a lot.
She came to understand the risks in not addressing a potentially tethered spinal cord.
And while she did not like the idea of surgery, she started to accept that it might be necessary.
And it became clear that if I was going to have her best buy-in, we needed to do it sooner rather than later.
As a social worker, I am a firm believer in the mind-body connection. It was really important to me that Susan go into the surgery -- if needed -- with the most positive attitude possible.
So...I put on my social worker hat and started trying to shake test results loose...and then I e-mailed Susan's pediatric neurosurgeon, who called late the very next day to review test results and make a plan. That was Thursday, February 19th. It did not take long for him to list the various concerns that supported his recommendation that Susan undergo a tethered cord release. When I questioned him, he admitted that there was no way to know for certain whether or not Susan's spinal cord was truly tethered, but, he assured me that a tethered cord release would address the issue both now and in almost every circumstance in the future.
He offered to perform the tethered cord release the following week, and asked me to call his nurse the following morning. I reminded him of Susan's participation in the PRROTECT clinical trial and we talked about options. After some discussion, he said he would accommodate whatever the wishes were of the doctors running the clinical trial.
Early Friday morning, I got to work. I e-mailed the PRROTECT team outlining the situation, the pediatric neurosurgeon's proposed surgical intervention and explained that the neurosurgery team would schedule Susan's procedure either early Tuesday morning (with the option of her maybe taking her peanut dose Tuesday afternoon or evening) or early Thursday afternoon (with the option of her taking her peanut dose very early Thursday morning).
We exchanged e-mail, and I was initially discouraged to learn that two of the three doctors running the PRROTECT study were either in Dallas, Texas at the 2015 American Academy of Allergy, Asthma & Immunology conference or en route. Of course, I thought.
But, actually, they weren't unreachable (of course, of course -- they are always available -- what was I thinking?) -- and, in fact, they were together with all of the great minds, including many, many doctors involved in the PRROTECT study from other sites. They planned to put their minds together, but needed time.
Late Friday morning, I spoke with the pediatric neurosurgeon's nurse to explain that we needed time so the allergists could formulate a plan. She suggested that she hold both surgical slots for Susan while the PRROTECT team made a plan.
(Ummm...incredible. Unreal. I think I thanked her about 100 times.)
By Saturday afternoon, the doctors from the PRROTECT team had a plan. Hold the dose the day of surgery. Dose at 50% (1000 mg of peanut) the first and second post-operative days and then, if tolerated, increase to the full dose (2000 mg) on the third post-operative day. We agreed that Tuesday made a lot more sense than Thursday, as the doctors from the PRROTECT study would be able to more easily follow Susan during the week.
I liked the plan, and I really liked the fact that some really, really good minds had formulated the plan.
Susan's surgery was yesterday. For anyone who has never kissed their child as they are wheeled off to the operating room, let me tell you -- it is one of the most difficult things I have ever done. I was immensely thankful to the anesthesiologist who started peppering Susan with questions about the difference between figure skating jumps as he wheeled her away, and fought the urge to chase them down with her EpiPens (I knew they would have epinephrine in the OR, but, still.)
Waiting for Susan to come out of surgery was almost as hard as sending her off.
But let me take a moment, here, to say that I was acutely aware as I sat in the surgical waiting room on the seventh floor (which is where the more serious operations are performed), of how fortunate we are to have three basically healthy children. (Yes, Susan's food allergies are difficult, and have changed and shaped her life immeasurably...but, as I sat amongst parents whose children were undergoing their umpteenth surgery, and next to parents whose toddler-aged son was going to be in surgery for 7 or more hours, I offered up a respectful thank you for the health of our children.)
Of course, I saw Susan's pediatric neurosurgeon long before I saw Susan. He told me that the tethered cord release went very well. He was very, very, very (did I say VERY?) pleased with his incision. He explained that a good incision closes and heals well, which reduces the risk of spinal fluid leak, infection, and future tethered cord issues. Later, he actually told Susan the incision wouldn't show -- even in a bikini.
When it was time for Susan to be admitted, I was surprised to learn that she would be on the 19th floor, which is the same floor the Clinical Research Unit (CRU) is on. Her room in the Acute Care Unit is just steps from the CRU!
Yesterday afternoon, we saw the allergist from the PRROTECT study who is following this particular part of Susan's journey. She reviewed Susan's chart and shared with me some very new anecdotal news from the 2015 American Academy of Allergy, Asthma & Immunology conference -- that NSAIDs (Non-Steroidal Anti-Inflammatory Drugs) and sometimes opioids have adversely affected subjects' tolerance of their daily allergen dose.
The things we have learned...hormones and pain medications can both adversely affect tolerance of one's allergen.
The PRROTECT doctor's timing was good, because the anesthesiologists (who manage post-operative pain in the Acute Care Unit for the first 24-48 hours) and Susan and I had just been talking about pain management. (Fortunately, Susan has been as comfortable as possible given that she has to stay flat -- on her back or in the same plane on her side.) We made sure the doctors all understood our desire to avoid NSAIDs and opioid-based pain medications as much as possible (Susan had already had one dose of a NSAID immediately following surgery, in the post-operative recovery room) and had a PCA with an opioid-based pain medication, but, she hadn't used it yet.
We agreed that Susan would take her peanut dose per the plan laid out...and it was at that point that I realized that even though I never intended to write about this part of Susan's journey, it is impossible not to -- and it is crucially important to document what her experiences are, as even though she is the first PRROTECT subject to undergo major surgery while in the study, she is surely not the last child undergoing oral immunotherapy to have surgery...