About a week and a half ago, as I was dressing Lexi for bed, I noticed a bump right in the middle of her back exactly between her shoulder blades. At first, I thought it was just the way she was positioned and what I was feeling was just a bone in her spine protruding slightly. But it was still there even when she changed positions. Now, Mike and I tend to be very hands-on parents in every sense, so with all the hugging, wrestling, back-rubbing, dressing, hair fixing, and bathing that goes on, new lumps, bumps, bruises, and boo-boos are usually noticed right away. That is especially true in summer when bathing suits are constantly getting put on and taken off and I always seem to be drying off and warming up a kiddo in the perpetually chilly Y locker room. And we were coming off a particularly active weekend, so I chalked it up to either a bug bite or a bruise or swelling from one of the 15 times she rode the new kids' roller coaster at Busch Gardens (the ride is fun, but seriously, I think the seats are made from unpadded iron). The point being, I'm pretty sure the bump could not have been there long before I discovered it.
On Thursday, I picked my daughter up to give her a hug and noticed it was still there. I pulled her hair back and could clearly see the lump. I showed Mike and he agreed that it didn't look quite right. The pediatrician asked to see her that afternoon - apparently the phrase "lump on her spine" earns you a coveted same-day sick visit slot.
When the doctor came in, I told him I really hoped he was just going to chalk me up as a crazy, overbearing mom, but that Mike and I would really just feel better having Lexi checked. Despite the brevity, I had a nagging feeling in my gut and could not shake the thought that no medical professional has probably ever started a sentence with, "Great news! We found a lump!" I'm certainly no doctor, but in my experience, when it comes to the human body, lumps are rarely a good thing. It didn't help ease our minds that both the doctor and the nurse were able to see the lump from 8 feet across the room before the physical exam even started. It sort of blew away the illusion that maybe vanity had made us hyper-sensitive to this ugly thing on our beautiful baby.
He prodded and checked, asking Lexi questions along the way. She was her usual bashful and charming self, answering everything he asked in her mystery NY accent and still turning half of her Ls and Rs into Ws, highlighting just how little she still is.
When he was done, I waited to be judged as nutty Ms. Suman who freaks out over the smallest of things. But that didn't happen. Instead, the doctor said, "I have no idea what it is". Now, I should point out that I have nicknamed this particular doctor "Doogie". He is new to the practice and fairly new to doctoring, in general. And I don't necessarily consider this a bad thing. I believe younger doctors often have an advantage in that their training is still top of mind and I have found them more willing to double check information or ask for second opinions than more seasoned docs. The drawback, of course, is they have far less clinical experience and, as such, don't have a wealth of anecdotes and patients from which to draw parallels. I kept thinking, "I wish Dr. Bob was here today. I'm sure he's seen this a hundred times." Unfortunately, that hope, too, was shattered when the radiologist at CHKD (Children's Hospital of the Kings Daughters) agreed with Doogie: they needed an ultrasound to figure out what it was.
I can go on a long tangent here about how they originally scheduled the u/s for 11 days later and all the hoops Mike jumped through to get it moved. Very long story short, however, Mike got them to move it up to Tuesday the 16th. You can't tell two worried parents that you don't know what is wrong with their child and then tell them to wait almost two weeks for the next step in figuring out what to do!
While the u/s itself was uneventful (Lex was a perfect angel), everything surrounding it was stressful. As we sat in the waiting room, my heart was racing in my chest. Mike was uncharacteristically quiet. But I had to pretend all was wonderful to keep Lexi from getting scared. All three of us went in for the u/s and it was torture for Mike and me. The tech was typically inscrutable. I could not get her face or eyes to betray whatever she was seeing on the screen. And, of course, I knew that if the image on the screen was making no sense to me, Mike would not have a clue - to this day he STILL can't see Lexi's face clear as day on the final u/s of my pregnancy! At that point, everything and everyone becomes suspect to a worried mom. The tech gave Lexi six stickers. Was it because she really was very good or was it because the tech had seen something horrible and felt sorry for us? We weren't allowed to leave until the tech talked to the radiologist. Was that S.O.P to make sure the views were clear or was whatever was there so terrible that the radiologist needed to be consulted right away???
There is another tangential tale for another time that goes here about the wild goose chase and associated frustration and anger at trying to find out the results of the u/s in a timely fashion. But I will sum it up by saying pediatric nurses who get an attitude with a mother who has heard and seen the words "unknown spinal growth" and "soft tissue mass above T3" in relation to her not-quite-four year old should either consider a different career or have a quick refresher course in empathy and basic human decency.
After an interminable and agonizing wait, the doctor finally called to talk to me at 2 on Wednesday afternoon. I retreated to my bedroom closet, the place I usually go to take phone calls when either I or the caller needs to be able concentrate without the steady din of shrieks, laughter, and general destruction generated by an almost-four year old and 5 1/2 year old playing together in the background. The call was not what I had been expecting.
"I finally have the results of Alexis' ultrasound and they are concerning." Not a good start to the conversation. My heart starts pounding all over again and I can't say anything so he plows ahead. He proceeds to read from the radiologists' report. I understand the words but don't have the medical experience to put them in context, so Doogie stammers around but eventually does it for me: "There is no blood supply to it, so it doesn't appear to be a tumor. However, there is an outside possibility, and she doesn't have any of the other symptoms, but there is a chance, a small chance...well, we can't rule out that we could be looking at leukemia or lymphoma."
You know how you read in books or hear a character on TV or in a movie say their head was spinning? It really happens. I got dizzy and had to sit on the floor of my closet. It became difficult to hear because the blood started pounding in my ears. I had to concentrate to breathe. I went into a flop sweat. Did he really just say that my child, my baby, my little girl - the sweet, shy, little Italian princess with the fiery temper who loves her brother and all things sparkly and pink and purple, the little pumpkin who just starting writing her own name and learned her phone number from her "brudder" - THAT child might have cancer? Ever wonder what goes through your head at a moment like that? I'll tell you: Please, God, no.
I asked him to re-read the radiology report and began scribbling random words on an empty shoe box so I could try to accurately relate the information to my husband and my parents and my sister: "leukemia", "lymphoma". It won't matter because I am shaking so badly the words are barely legible.
He says he wants her in for a blood test right away and asks where we live. I tell him but also say it doesn't matter. He just needs to tell me what lab he wants to use and I will take her wherever we need to go the minute we are off the phone. I'm still crumpled on the floor of the closet when I call Mike. As soon as I say leukemia and lymphoma, I can hear him actually gasp. For the past week, we've been consumed with conversations about financial worries, and when my new job would start, and taking the deadbeat client who owes us $8,000 to court...and right now, neither one of us gives a damn about any of it because someone just told us our baby might be very, very sick. I want to cry, my head is pounding, and I feel like I might throw up. But I have to walk into the playroom and cheerfully announce to Lexi that we need to go see another doctor because Dr. Robinson needs some more information. To her, going to the doctor means stickers and treats, so she happily hops off the chair and asks if she can bring her glow-in-the-dark dinosaur with her. It truly feels like someone is twisting a knife in my heart. I grab the finger rosary someone gave me a few years ago and the guardian angel token I keep on my vanity, shove one in each pocket, and head out.
We leave in such a rush that I barely have time to leave a message for my mom. I don't give any details...I don't want her and my dad to hear those words on a message. I just tell her the doctor wants blood work. Normally, I would call at least one of my two best friends, too, but there is not time and I don't know how many more times I can say the words before I really do lose what little composure I still have. I'm not sure I have ever felt quite so alone. I know I have never been that scared. As many of you know, one of my best friends is a local television news anchor. Funnily enough, as I made the turn onto the street where the lab is located, I got behind an ad-mobile. I looked up to see a life-sized picture of my friend smiling at me from the truck. Sounds weird, but it made me feel a little less alone, at least for a minute.
I sign in at the lab and have to ask the receptionist the date. I can remember it is June but I can't think clearly enough to remember the day. At that moment I am struck by the irony. I can't conjure up the date but there is a chance, depending on what the white blood cell count shows, that the date will be seared in my brain forever with dates of other terrible anniversaries: July 29th: the day my grandfather died, November 27th: the day my grandmother died, March 4th: the day Tucker went to heaven.
Meanwhile, Lexi is blissfully unaware that anything is not right. She comments on the dresses worn by the cartoon princesses decorating the walls. She keeps mistakenly calling Pinocchio "Pokemon" as she colors a picture of him. She laughs out loud as Donkey does his shtick on the "Shrek" DVD they just started. I, on the other hand, am spinning my finger rosary so fast that I might get a blister. I'm trying to say prayers but keep losing the words as other thoughts ricochet around my brain: "Hail Mary..." how do you explain cancer to a four year old? "...full of grace..." I'll shave my head with her if she loses her hair. "...the Lord is with thee..." what if I have to pick out a tiny casket or speak at her funeral? How could I ever find the words to make the world know how much we love her and how much she means to us and how I don't think I can live without her. I can't do this...
I can remember being on a walk with my mom one time when I was a little girl. I was maybe seven and it is one of those memories that is clear as day to me; I can even tell you exactly where we were in the old neighborhood at the time. Somehow, the topic of death came up and I told her how scared I was of it. I distinctly remember her telling me that when people got older they got less scared of dying and I remember at that moment thinking how brave my mom must be. But I think now I understand it better. I think she was not saying that death is any less intimidating, I think she meant that when you have kids, dying is no longer the worst thing that could happen to you. But something happening to your child - something you can't prevent and you can't fix, well, that is sheer terror. I think any parent would tell you they would die a thousand deaths to spare their child one.
They call us back and I hold Lex in my lap while they draw blood. I didn't tell her it would be a blood draw for selfish reasons so now she is pissed and sad, and fat tears roll down her cheeks onto my arm. I dry her eyes and hold her tight and hope she doesn't notice that I am crying, too.
We go home to wait. Dr. Doogie has put a STAT order on the blood work and Mike has made it clear we are to be called even if there is no news to report, so we will probably hear something tonight. Tears stream down my face as I read the dozens of messages of encouragement and offers of prayers from the Duckies (an online community of mommies who have been my friends since the days of trying to get pregnant with Jamie). Lex and I sit on the couch, her enjoying the fact that I am letting her watch crappy TV shows, me clutching the phone in a death grip.
At 5:15 the phone finally rings. I peel myself off the ceiling and answer it. It is Dr. Doogie. The pathologist has not reviewed the blood work yet, but the tech has. She says all the counts are perfect. She has noted a single atypical cell, but the doc says that is normal - we all have a certain number of atypical cells and he would not be concerned unless there were a bunch of them. The tech told the doctor she is only forwarding it on to pathology because it is what his orders say to do. Under regular circumstances, this is not a sample that would merit further review by the pathologist. We still don't know what it is, but it is probably NOT leukemia or lymphoma. Probably. He hedged his bets again with that word.
So, today we wait for confirmation of the tech's initial analysis from the pathologist. Assuming (praying) there are no changes, we move on to the next step which is a biopsy and/or surgical removal. I still have a nagging feeling in my gut but I am not sure I can trust it right now. The stark terror of the past 24 hours has colored everything. It will be a while before I can separate instinct from fear again.
Again, for those of you who pray, please keep my little girl and our family in your prayers. I'm not sure we are out of the woods but I am hoping we can see the edge of the forest from where we are. While it is probably not cancer, we still don't know what it is and that is more than a little disconcerting. Go find your babies and give them hugs. For the rest of the day, laugh when you want to yell, let them get absolutely filthy and then get dirty with them, and maybe even let them have dessert before dinner. One day of indulgence won't spoil them forever.
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