Today was our much-anticipated consult with the pediatric surgeon. For those short on time, I'll not bury the lead: we still don't know a whole lot more specifics than before, but the news is generally good. Certainly, at the very least, it is better than what we were led to expect a couple of weeks ago.
To bring you up to speed, to this point we know there is a mass on/above/near/in the general vicinity of Lexi's spine. Her pediatrician called the radiology report from the ultrasound "concerning" and scared the bejesus out of us by adding that she might have cancer. The blood test showed "perfect counts", pretty much ruling out leukemia and lymphoma, but we still don't know what this thing is. We were told the next step would be a visit with the pediatric surgeon, but no one ever really clarified for us what, exactly, the surgeon would be doing.
It is not surprising, then, that today's appointment started with a lot of anger and frustration on our end. Our only instructions to this point have been to show up at the CHKD satellite office at 1 p.m. We've not been given a phone number to call to ask questions. We've not received a phone call telling us what will be happening. We have not even received a letter with pertinent information. We walked in the doors unsure of whether we were merely having a consult with the surgeon (whose name we wouldn't even know for another hour or two) or whether our daughter might be undergoing a biopsy or even surgery before the afternoon ended.
We were ominously directed to check in "upstairs" in the surgery department instead of in the main check-in area. This would be a good time for me to point out that in the process of trying to have kids, having kids, and repairing the significant internal damage done by said kids (reiterating note to self: those two will NOT be getting their security deposits back after the way they trashed the place) I underwent six surgeries in 4 1/2 years. Point being, I know a thing or two about surgery prep. So, as we head to the elevators, I start to worry that perhaps Lex should have been NPO (nothing to eat or drink) and since she has not been NPO, I start thinking that this may be a totally wasted visit. As it turns out, it was not a problem, but it gave me something to stew about while we waited a very long time for the surgeon to see us.
When the surgeon finally came in, it was a total 180 for us from our previous experiences. For starters, she was very calm and projected a general air of confidence and knowledge without the slightest hint of arrogance. The "God Complex" so commonly found in surgeons was nowhere to be found. Let me tell you how reassuring it is to a worried parent to feel like the person behind the wheel knows what the hell they are doing! Bedside manner-wise, she wasn't the greatest with Lexi. She wasn't mean or scary or anything, just not as kid-oriented as you might think a pediatric surgery specialist might be. But, A) most of the kids she deals with on a daily basis are anesthetized and don't care if she is Patch Adams or not and B) I'm not auditioning her to be a birthday party clown so I don't really care if she can pull a quarter out of my kid's ear as long as she can pull a mystery lump out of the kid's back!
At any rate, she came out of the gate with a totally different take on the radiologist's report. Instead of finding it "concerning" as Doogie did, she said the u/s pretty much confirmed to her that whatever it is, the lump is most likely benign (it helps that she personally knows and trusts the radiologist who read the scan). It also helps that the lump has gotten noticeably smaller over the past few days. In her words, "Horrible things don't get smaller. Horrible things get bigger." Finally, she was very pleased with how the thing feels when she manipulates it. Apparently, horrible things behave and feel differently than the thing on Lexi behaves and feels. I am loathe to admit that I find it rather skeevy to touch so I try not to touch it. But with a doctor for a brother-in-law and a retired nurse for a mother, I have come to understand over the years that medical people enjoy such human oddities...the squishier, the smellier, and the pussier, the better in their book.
The surgeon laid out three possibilities for what she thinks the lump could be, none of them overly scary or terrible. Her best guess is that it is a rebellious lymph node. Then she left it to us to decide what to do. Option A is to continue to monitor it over the next 3 to 6 months to see what it does. Option B is to have it surgically removed. She gave us pros and cons for each option and then said Lexi's case falls right in the middle: the risks involved with surgery are equal to the risks involved with waiting. Then she said the magic words that I needed to hear - words spoken NOT from surgeon to patient/parent but words from one mother to another: "If it were my kid, I'd probably wait at least three months and then reevaluate."
So that is what we have decided to do. While I don't like the idea of this "thing" inside my kid, I like the idea of putting my just-about-four year old through an unnecessary surgery even less. The decision was made easier when she added the caveat that if we find ourselves lying awake at night worrying, we can call at any time and schedule to have it removed. She says they frequently do such surgeries not because they are medically necessary but because it eases the minds of terrified parents.
She answered every question we had honestly and completely. As she was getting ready to leave the room, she asked both of us if we had any more questions or concerns. Then she told us, "My door is always open. Please call me if you have any questions or concerns between now and when we reevaluate in a few months." All of which left me wondering: Who is this woman and where do I find a pediatrician like her????
I'm not sure when I will consider this saga to be truly over. Part of me wonders if surgery would be the right move. At least then we would know for certain what is hiding under our daughter's skin and it would bring some closure. If it goes away on its own, I will be happy, but will probably always worry that it is just lurking, waiting to come back. But I keep coming back to the notion that it is not fair to put my child through surgery, no matter how minor, just to ease my own neuroses and insecurities. So for now, we will pray that we have made the right decision and pray that it continues to shrink away to nothing and never, ever comes back.
In the meantime, I'll start the process of searching for a new pediatrician. Looking at the situation with the veil of panic and terror finally lifted, it is clear that this has been poorly managed from the outset. Our trust has been breached and I don't think that can be repaired. There is no point continuing to see a doctor/practice if I will forever doubt anything and everything they say. So if anyone in our area has a practice or a doctor that they just love, let me know!
For now, hug your babies no matter how old those babies may be and thank God for every moment He gives you with them.
Tuesday, June 30, 2009
Thursday, June 18, 2009
I Wish He Would Have Just Told Me I'm Crazy
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.
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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