It's hard to talk about this. I think my wife already said a lot of it. Our baby girl has cancer. The situation is about as hopeful as cancer could possible be. If this wasn't discovered for another 6 months it's still probably that the prognosis would be very good. While that makes it easier it's not easy.
Summation: This kind of stinks. A lot of people are praying for our baby girl. Our God is an awesome God.
Wednesday, November 27, 2013
Mommy: It's official... Neuroblastoma - aka Holy Cow our baby has cancer
It was the day after the biopsy, and the day before Thanksgiving. Dr. Meany had told us not to expect results until Friday or Monday, so I was back at work and telling everyone that Cambria did great at the biopsy and we shouldn't know more for a few days. Towards the end of my day we got word that the rain was turning to sleet in some parts of the area, so it might be a good idea to head out a little early if you have the hours. Then I got the phone call.
Derek called saying that they had got the biopsy results, and it was cancer.
By this point it was what we expected, and after all of our prayers and having researched the disease, we were feeling OK about it… after all it had great success rates, and we had found it early, and blah blah blah… There’s still nothing OK about hearing that your baby has cancer. Nothing can *actually* prepare you for it. Then when I asked about treatment, the other shoe dropped. Dr. Meany had told Derek that while the images would be going to surgery and we’d get an assessment about surgically removing the tumor, in her experience with other patients having Neuroblastoma in the same place – the risk is generally higher for surgery than it would be for chemo. Chemo. That word echoed throughout me, and I only sort-of processed anything else said after that. Thinking about it now as I write this still gets me all teary. Apparently the chemo she has in mind is a “easier” chemo, and babies tend take chemo easier than adults overall. She might not even feel sick. Each treatment would take 2 days, and she was guessing there would be 2 or 3 treatments a couple of weeks apart. I still haven’t even processed the rest of it – it’s just guesses and I still haven’t been able to get past “chemo”. I’m still clinging to the hope that a surgeon will be happy to remove the tumor safely and we can just be done with this.
Now there’s discussion of the other tests that will happen all to confirm that it hasn't spread at all. Dr. Meany explained that there would be a CT of the lungs, a radiated iodine test called a MIBG, and a bone marrow test. The CT for the lungs is just because the lungs are a more difficult place to treat, and it can spread there, so we want to make absolutely sure she’s clear. The MIBG test is a full body test. We give her drops of regular iodine in order to fill up her thyroids with normal, non harmful iodine, then the day before the scan is done she’s given radiated iodine, which is something some tumors, Neuroblastoma being one of them, attract. Then they’ll do a full body scan, seeing if there are any other “hot spots” where there might be more Neuroblastoma. Then we’ll continue to give her the regular iodine drops to keep her thyroids full and happy, and not trying to grab and hang on to the radiated stuff. The bone marrow test is because apparently Neuroblastoma can spread to the bones as well, and they just want to check and make sure she’s clear.
Hanging up the phone, Cathy came rushing over as she could tell I got “the” call. I told her and Rich but honestly I was just sort of wide-eye and in shock. Linda came by, and I told her as well, then for the second time in a week my coworkers prayed with me. I needed this so bad. I decided between the weather and my newly desperate need to snuggle my family I decided it was time to leave. I told my bosses the cliff notes version as I was starting to cry and headed out. I drove home in a bit of a fog – thankfully the weather really wasn't an issue – a little rain, but my route was warm enough that there was zero ice to contend with.
Then Derek and I had to make a series of the hardest calls we've ever had to make. Thankfully we were all aware that cancer was a very likely possibility, but dealing with the realness of it along with this looming possibility of chemo was/is so hard. We talked a little about when and how we would tell everyone else, but it was honestly a daunting task and we just went to bed. What I've found is that talking with folks after they know, and giving them updates really isn't hard. But every time we tell someone that our little girl, our 4 month old baby has cancer… we experience the heartbreak, shock and grief all over again with them. At some points I tried to disassociate myself from it, and sort of ran off the stats and info like a script I had memorized. In fact, after reading over my first couple of posts, I think I was doing a bit of that on here. That led me to post a quick, reduced detail explanation on Facebook the next day. As much as it may not seem like it, Thanksgiving was really the best day to share this news, as we have SO MUCH to be thankful for. This was found early, if you’re going to have cancer, this is really the one you want to have, Cambria is so young that she won’t have to remember anything from the weeks ahead, we live close to, and Cambria is being treated at one of the best Children’s hospitals in the country, her oncologist is seriously well qualified , and Cambria is *STILL* not showing any symptoms… she’s a happy, growing, snuggly baby who has no clue what “cancer” is. Not to mention all the amazing support our family and friends have already shown us. It’s *really* humbling and humbling.
And here's the picture of her on Thanksgiving, sitting on our couch and happy as a clam:
Derek called saying that they had got the biopsy results, and it was cancer.
By this point it was what we expected, and after all of our prayers and having researched the disease, we were feeling OK about it… after all it had great success rates, and we had found it early, and blah blah blah… There’s still nothing OK about hearing that your baby has cancer. Nothing can *actually* prepare you for it. Then when I asked about treatment, the other shoe dropped. Dr. Meany had told Derek that while the images would be going to surgery and we’d get an assessment about surgically removing the tumor, in her experience with other patients having Neuroblastoma in the same place – the risk is generally higher for surgery than it would be for chemo. Chemo. That word echoed throughout me, and I only sort-of processed anything else said after that. Thinking about it now as I write this still gets me all teary. Apparently the chemo she has in mind is a “easier” chemo, and babies tend take chemo easier than adults overall. She might not even feel sick. Each treatment would take 2 days, and she was guessing there would be 2 or 3 treatments a couple of weeks apart. I still haven’t even processed the rest of it – it’s just guesses and I still haven’t been able to get past “chemo”. I’m still clinging to the hope that a surgeon will be happy to remove the tumor safely and we can just be done with this.
Now there’s discussion of the other tests that will happen all to confirm that it hasn't spread at all. Dr. Meany explained that there would be a CT of the lungs, a radiated iodine test called a MIBG, and a bone marrow test. The CT for the lungs is just because the lungs are a more difficult place to treat, and it can spread there, so we want to make absolutely sure she’s clear. The MIBG test is a full body test. We give her drops of regular iodine in order to fill up her thyroids with normal, non harmful iodine, then the day before the scan is done she’s given radiated iodine, which is something some tumors, Neuroblastoma being one of them, attract. Then they’ll do a full body scan, seeing if there are any other “hot spots” where there might be more Neuroblastoma. Then we’ll continue to give her the regular iodine drops to keep her thyroids full and happy, and not trying to grab and hang on to the radiated stuff. The bone marrow test is because apparently Neuroblastoma can spread to the bones as well, and they just want to check and make sure she’s clear.
Hanging up the phone, Cathy came rushing over as she could tell I got “the” call. I told her and Rich but honestly I was just sort of wide-eye and in shock. Linda came by, and I told her as well, then for the second time in a week my coworkers prayed with me. I needed this so bad. I decided between the weather and my newly desperate need to snuggle my family I decided it was time to leave. I told my bosses the cliff notes version as I was starting to cry and headed out. I drove home in a bit of a fog – thankfully the weather really wasn't an issue – a little rain, but my route was warm enough that there was zero ice to contend with.
Then Derek and I had to make a series of the hardest calls we've ever had to make. Thankfully we were all aware that cancer was a very likely possibility, but dealing with the realness of it along with this looming possibility of chemo was/is so hard. We talked a little about when and how we would tell everyone else, but it was honestly a daunting task and we just went to bed. What I've found is that talking with folks after they know, and giving them updates really isn't hard. But every time we tell someone that our little girl, our 4 month old baby has cancer… we experience the heartbreak, shock and grief all over again with them. At some points I tried to disassociate myself from it, and sort of ran off the stats and info like a script I had memorized. In fact, after reading over my first couple of posts, I think I was doing a bit of that on here. That led me to post a quick, reduced detail explanation on Facebook the next day. As much as it may not seem like it, Thanksgiving was really the best day to share this news, as we have SO MUCH to be thankful for. This was found early, if you’re going to have cancer, this is really the one you want to have, Cambria is so young that she won’t have to remember anything from the weeks ahead, we live close to, and Cambria is being treated at one of the best Children’s hospitals in the country, her oncologist is seriously well qualified , and Cambria is *STILL* not showing any symptoms… she’s a happy, growing, snuggly baby who has no clue what “cancer” is. Not to mention all the amazing support our family and friends have already shown us. It’s *really* humbling and humbling.
And here's the picture of her on Thanksgiving, sitting on our couch and happy as a clam:
Tuesday, November 26, 2013
Dad: Biopsy Day
This one is even earlier and my mother in-law is joining us for the festivities. After striking out for breakfast at Starbucks and Chick-Fil-A, we found ourselves partaking in a McDonald's experience so bad you almost want to applaud them. Anyway, we got to the hospital and Cambria was still asleep (praise be to God). She kept sleeping almost till they called her in. This launched us on one of the longest hours of our lives. This was for two reasons, first: I, as the stay at home dad, very rarely let her out of my sight. When I do I know that her mom is with her. At this moment I was standing next to her mom watching our baby girl disapeer into a door way and we know that they plan on screwering her torso with a long thick needle. Thick enough to do the job at hand, which is to get samples of a tumor. We are very thankful for the speed that things have moved to get us to this point. However, it seems like we'ed need a little preamble or something to prepare for this.
I find myself incapable of merely watching the computer screen that merely displays "in surgery". I both want more information and at the same time think the play by play would mess with my head. So I wander a bit. I went to the cafeteria to get a straw (Ronald forgot to give me one). Basically, I'm finding excuses to move. Finally the nurse calls us over and tells us that they got 5 samples and everything went perfectly. She was waking up now and we would be able to see her in a few minutes. We went in to find a swarm of nurses buzzing around trying to figure out what was wrong. Clearly a baby crying that much is in pain. They gave her some drugs while we fed her and declared that she took to narcotics quickly.
I went back to the waiting room to fill Cambria's grandma in on what's been going on and happened across Meany (still nice). Who wanted to come in and say a few words. She said the Cancer word a few more times, and told us about a study that she is a part of. It will include something like 10k babies and they'd like Cambria to be a part of it. This is another moment of seeing a blessing in the midst of hardship. Our baby girl won't remember this, will most likely be cured completely, and will be part of something that will help give more information about a disease that kills babies. It sucks for us in the meanwhile, but that is pretty neat.
The rest of the day seemed to go rather quickly after that. We were told that with Thanksgiving coming in two days we would likely hear results the following Monday.
I find myself incapable of merely watching the computer screen that merely displays "in surgery". I both want more information and at the same time think the play by play would mess with my head. So I wander a bit. I went to the cafeteria to get a straw (Ronald forgot to give me one). Basically, I'm finding excuses to move. Finally the nurse calls us over and tells us that they got 5 samples and everything went perfectly. She was waking up now and we would be able to see her in a few minutes. We went in to find a swarm of nurses buzzing around trying to figure out what was wrong. Clearly a baby crying that much is in pain. They gave her some drugs while we fed her and declared that she took to narcotics quickly.
I went back to the waiting room to fill Cambria's grandma in on what's been going on and happened across Meany (still nice). Who wanted to come in and say a few words. She said the Cancer word a few more times, and told us about a study that she is a part of. It will include something like 10k babies and they'd like Cambria to be a part of it. This is another moment of seeing a blessing in the midst of hardship. Our baby girl won't remember this, will most likely be cured completely, and will be part of something that will help give more information about a disease that kills babies. It sucks for us in the meanwhile, but that is pretty neat.
The rest of the day seemed to go rather quickly after that. We were told that with Thanksgiving coming in two days we would likely hear results the following Monday.
Mommy: Biopsy Day
It was yet another early morning drive into DC, but this time we brought my mom along with us. (And stopped at the worlds most inefficient McDonalds ever on the way, as both starbucks and chick-fil-a had yet to open.) This time we checked into the surgical center, which I have to admit was a lot fuller than I expected for 5:30am. They had a serious system down, complete with a big widescreen tv turned vertical displaying all the ORs, the case numbers scheduled for them, and which stage their at (This way all the anxious families on the waiting room can see when the child is brought into the OR, when the procedure has started, when the procedure has finished, and when the child was moved to recovery.)
Not long after they checked us in we were pulled back to a pre-op exam room where somehow Cambria was being super patient with everyone despite being denied food since midnight!!! (This is generally unheard of as food is by far her highest priority) Through a combination of passing her back and forth between Derek and I, rocking her in the chair, and bits of the first TV we've let her outright watch (a truly horrible episode of Mickey Mouse Clubhouse - seriously, Mickey YOU'RE the Mouse-ke-tool) The doctor, OR nurse, anesthesiologist, and anesthesiology nurse all came in and talked us through the details of the procedure and the post op. They weighed her again, now 14lbs 10 oz, took a little blood sample and her temperature, and suddenly I was handing her over to the nurse. That happened way too fast for me... we were all talking about what was going to happen, but I somehow just wasn't prepared for her to put her arms out asking for her.
The next hour was the longest of our lives. The waiting room in the surgery center at Childrens' is also one of the most intense places I've been. If you're lucky like we were, and only there for a simple procedure you can't help but humbled and thankful. You are surrounded by people who are truly going through hell on earth. There was one family there who this surgery was their last hope... they had 5 other surgeons all over the country refuse to attempt this surgery, and this surgeon wasn't able to say just how it would go.
Finally the front desk nurse came and told us that the procedure had gone well, they had gotten all the samples they needed and we'd be able to see her soon. Then what seemed like an *eternity* later, the surgeon came back and told us that they had gotten 5 samples, and that the tumor looked homogeneous, (meaning the samples they got should be very telling of what was going on all over the mass) Another couple of minutes after that we were able to go back to post-op and see our little girl :-)
As we walked up, Cambria was screaming her little head off - beet red, crying and kicking SURROUNDED by nurses. There were 3 or 4 of them in this tiny post op room, rushing around, taking vitals, putting blankets on her and trying to soothe her. They were actually ordering pain meds for her as they thought she was in some kind of pain from the biopsy to have elicited such a response... nope! That's just what Cambria does when she's hungry. At 4 months old, she has perfected the Hangry. We popped a bottle in, and she was fine! So the nurses wandered off, dispersing among the rest of the post op bays. About 5 minutes later she was happy and back to sleep:
Not long after they checked us in we were pulled back to a pre-op exam room where somehow Cambria was being super patient with everyone despite being denied food since midnight!!! (This is generally unheard of as food is by far her highest priority) Through a combination of passing her back and forth between Derek and I, rocking her in the chair, and bits of the first TV we've let her outright watch (a truly horrible episode of Mickey Mouse Clubhouse - seriously, Mickey YOU'RE the Mouse-ke-tool) The doctor, OR nurse, anesthesiologist, and anesthesiology nurse all came in and talked us through the details of the procedure and the post op. They weighed her again, now 14lbs 10 oz, took a little blood sample and her temperature, and suddenly I was handing her over to the nurse. That happened way too fast for me... we were all talking about what was going to happen, but I somehow just wasn't prepared for her to put her arms out asking for her.
The next hour was the longest of our lives. The waiting room in the surgery center at Childrens' is also one of the most intense places I've been. If you're lucky like we were, and only there for a simple procedure you can't help but humbled and thankful. You are surrounded by people who are truly going through hell on earth. There was one family there who this surgery was their last hope... they had 5 other surgeons all over the country refuse to attempt this surgery, and this surgeon wasn't able to say just how it would go.
Finally the front desk nurse came and told us that the procedure had gone well, they had gotten all the samples they needed and we'd be able to see her soon. Then what seemed like an *eternity* later, the surgeon came back and told us that they had gotten 5 samples, and that the tumor looked homogeneous, (meaning the samples they got should be very telling of what was going on all over the mass) Another couple of minutes after that we were able to go back to post-op and see our little girl :-)
As we walked up, Cambria was screaming her little head off - beet red, crying and kicking SURROUNDED by nurses. There were 3 or 4 of them in this tiny post op room, rushing around, taking vitals, putting blankets on her and trying to soothe her. They were actually ordering pain meds for her as they thought she was in some kind of pain from the biopsy to have elicited such a response... nope! That's just what Cambria does when she's hungry. At 4 months old, she has perfected the Hangry. We popped a bottle in, and she was fine! So the nurses wandered off, dispersing among the rest of the post op bays. About 5 minutes later she was happy and back to sleep:
While she was sleeping off the last bits of anesthesia, her oncologist came down to talk with us. She said that while they don't know if it *is* Neuroblastoma or not, it looks an awful lot like it, and she asked us if we were interested in sending any and all leftover samples from Cambria's treatment in to a national study on Neuroblastomas. So now, it won't change Cambria's treatment plan, but whatever tests are done for her will be sent along and may help another kiddo in the future :-) The oncologist told us we should expect results Friday or Monday (because of the holiday) but she would call us as soon as she got word. After this, and a good 45 minute nap, it was time to be released and we had this happy little girl staring up at us:
Friday, November 22, 2013
Dad: The day Daddy lived on the phone
This is the day where daddy lived on the phone. To put it in perspective the four month check up happened on tuesday, the CT scan on Wednesday, now it's Friday. You will all have to live with the disappointment of not knowing what went on on Thursday. We were supposed to hear results from the pee test today and we were a little anxious. Around ten am I got a call from Lisa, a scheduling person for Childrens. I tried to play it cool like I understood why my daughter needed a operation thinking that the details would come out in time. In reality I was slightly caught off guard. After a short conversation we work out a time on the following Tuesday for a biopsy of the tumor. Only the second time the word tumor had been used, and once I returned to breathing I asked many questions. I won't bother you with all the details, but the main points are that some level of anesthesia would be used and it was happening in the morning. She didn't seem to know too much though, she kept the books, but she did assure me that she would put a request in for the surgeon to call me so that I could find out what was going on. After a quick call to my wife, which scared the crap out of her, I returned to the dishes.
Two hours later I got a call from a pre-op nurse who told me about the things that we needed to do before a surgery which involved general anesthesia. After another barrage of questions she also assured me that a request would be put in for some Doctor to contact me. I again called my wife at work and scared the crap out of her.
Another couple of hours passed and Doctor Meany (she is still nice) called telling me that a radiologist had looked at the CT scan and that we were going to have to biopsy the tumor to find out exactly what we are dealing with. I asked many questions and finally I got many answers. The Biopsy is not going to be nearly as invasive as we were fearing, and that they could schedule it as soon as next week. I kind of laughed at her at that point...that might not have been very nice.
Another hour later a very hassled Surgeon called me because of the many requests that had been made for more information. He described the situation with roughly the candour of: So your kid has Neuroblastoma and we are gonna take a couple pieces of it.
We have an appointment for a biopsy 1 week after the mass was discovered, our God is an awesome God.
Two hours later I got a call from a pre-op nurse who told me about the things that we needed to do before a surgery which involved general anesthesia. After another barrage of questions she also assured me that a request would be put in for some Doctor to contact me. I again called my wife at work and scared the crap out of her.
Another couple of hours passed and Doctor Meany (she is still nice) called telling me that a radiologist had looked at the CT scan and that we were going to have to biopsy the tumor to find out exactly what we are dealing with. I asked many questions and finally I got many answers. The Biopsy is not going to be nearly as invasive as we were fearing, and that they could schedule it as soon as next week. I kind of laughed at her at that point...that might not have been very nice.
Another hour later a very hassled Surgeon called me because of the many requests that had been made for more information. He described the situation with roughly the candour of: So your kid has Neuroblastoma and we are gonna take a couple pieces of it.
We have an appointment for a biopsy 1 week after the mass was discovered, our God is an awesome God.
Mommy: The first day of many phone calls
We were hoping to hear back from one of the doctors at Children’s that Friday… the urine test was due to be finished by then even if they hadn’t processed the CT. Derek got a call that morning scheduling a biopsy for the following Tuesday morning. They were going to be able to do a minimally invasive needle biopsy, but she would have to be put under general anesthesia. For some reason they didn’t want to give too many details about time and pre-op instructions, so Derek kept calling back and leaving a variety of messages. The next call he got was Dr. Meany, the oncologist (yes, we see the irony of a pediatric oncologist having the last name of “Meany”). She was surprised that pre-op had already called to make the appointment, I guess she was all prepared to break the news that it would be necessary. She proceeded to have a long talk with Derek and explained that the urine test was inconclusive as the sample had dried up before it could be tested (doh!) but the CT had given them enough justification to go ahead with the biopsy. She said they still didn’t know what the mass was, but the biopsy should tell us a lot more. *gulp* we were so hoping that they would just write all of this off saying “oh it’s just a cyst” or some such… now there would be a biopsy and general anesthesia… 36 hours before we were just on our way to a regular 4 month checkup.
So as Derek was calling our parents and his sister updating them all with the news, and meanwhile I was still at work trying to focus, somehow, on code. Luckily, my current team is full of believers, and Cathy, and Linda especially were being seriously supportive. I decided to talk to Steve, who had unfortunately recently lost his wife to a long battle with cancer. I knew it would be hard, but he was the only one at work who had recent experience with biopsies and I had a few questions for him. So I asked him if he would be OK to talk about some of his experiences through his wife’s treatment process, and he agreed. When I told him what was going on he stopped and just started to pray with me. (LOVE this team!) I was hoping to find out timeframes on processing the biopsy information. His wife had 2, one that took 2 days and one that took 3 weeks. So I was hoping for the 2 days, as I am *not* a patient woman, and waiting 3 weeks to find out what was going on with my little girl would be torture.
Finally Derek got one last call – this one was from the surgeon performing the biopsy. He was clearly confused as to why he was needing to be on that phone call as he wasn’t an anesthesiologist so he didn’t know the type of anesthesia, and it was a fairly routine procedure. He *did* tell Derek though, that they were “fairly confident” that the mass *was* Neuroblastoma, and the biopsy was pretty much just there to confirm. This was a hard sentence. I was driving home when Derek told me. We spent most of that phone call not even talking – just periodic thoughts. As much as there were hints that this may be it… hearing that the doctors were pretty sure your infant has cancer will slap you in the face. Finally I was home and able to snuggle my little girl and my husband. Next we had the round of phone calls to make letting folks know. Thankfully by this point, there was already a growing number of people praying for our little girl and us, because somehow we were managing to keep functioning. One big factor is just how happy and thriving Cambria is… it’s almost impossible to look at this child and think “sick.”
Thankfully, my boss had approved for me to frontload a few of my hours so I started working weekends in order to not have to take PTO for her appointments. That weekend I worked both Saturday and Sunday, but only a total of 9 hours… it was really hard to leave her and go in, so I kept cutting it short.
Wednesday, November 20, 2013
Dad: Our First Trip to Children's
So we are driving to the Children's National Hospital at like 4:30
am. As much as the time is not...preferable, I give my wife credit,
because she took care of the midnight feeding (midnight was the last
time the baby girl would be able to eat before the exam at 7:30). It's
been roughly 12 hours since we found out that there is an unidentified
mass just above our daughter's kidney. Armed with Starbucks we charge
the mechanized armies that make up DC's traffic. 45 minutes and one lap
around the hospital we figure out where to park and wheel our still
sleeping (thank God) child up to the surgery waiting room.
Skipping past the next hour and a half where our hungry oscillated between screaming and sleeping. We were led to a little room where we were to give Cambria some contrast slowly over the course of an hour. Cambria ate and fussed, but due to the combination of holding, rocking, singing and talking we were able to keep the little ball of angry at a perpetual simmer. The nurse however did not have the perspective of just how bad Cambria is when she isn't getting what she wants and frets about it every few minutes. He proceeds to reduce her wait time by 5 minute increments until it rested at 40 minutes. We were amused to hear the tech's complain about this breach of protocal, but the test went well despite it. Cambria slept as if she were on my shoulder (praise be).
Once all was said and done the nurse told us to go home and wait a few days for results. However, hearing this our pediatirician bristled (we like our pediatrician) and we got a call 45 minutes later by another Doctor I hadn't heard of telling us to meet her in some waiting room for an unofficial discussion of Cambria's results. After a bit of an adventure negotiating the complicated halls of that particular hospital which seems to have similar rules of directions that might be employed on the Tardis. Ok we found the department and you have to take a moment when you realize that your about to walk your baby into a room that has an arrow pointed at it with the words "Cancer Center". After me and my wife managed to breath again we went and they told us two wait for what was being labled as tests. This whole thing felt like the medical version of meeting in an abandoned garage, and I mean that in the fondest possible way. A short wait later one Doctor Meany (I swear she's very nice) comes in and has us follow her as she looks around for an empty room. She then explains that she glanced at our CT scan and that the mass in Cambria's stomach greatly resembles a Cancer called Neuroblastoma. She proceeds to explain in admirable detail (considering this was completely off schedule and she has a very busy profession) that this is a very treatable form of Cancer and that she has a bunch of experience with it. She said a great many encouraging things, however the same four words kept replaying in my wife's head and mine: "your daughter has Cancer".
In summation: Over the course of 24 hours we have had a checkup, sonogram, CT scan, and meet with a specialist. Our God is an awesome God.
Skipping past the next hour and a half where our hungry oscillated between screaming and sleeping. We were led to a little room where we were to give Cambria some contrast slowly over the course of an hour. Cambria ate and fussed, but due to the combination of holding, rocking, singing and talking we were able to keep the little ball of angry at a perpetual simmer. The nurse however did not have the perspective of just how bad Cambria is when she isn't getting what she wants and frets about it every few minutes. He proceeds to reduce her wait time by 5 minute increments until it rested at 40 minutes. We were amused to hear the tech's complain about this breach of protocal, but the test went well despite it. Cambria slept as if she were on my shoulder (praise be).
Once all was said and done the nurse told us to go home and wait a few days for results. However, hearing this our pediatirician bristled (we like our pediatrician) and we got a call 45 minutes later by another Doctor I hadn't heard of telling us to meet her in some waiting room for an unofficial discussion of Cambria's results. After a bit of an adventure negotiating the complicated halls of that particular hospital which seems to have similar rules of directions that might be employed on the Tardis. Ok we found the department and you have to take a moment when you realize that your about to walk your baby into a room that has an arrow pointed at it with the words "Cancer Center". After me and my wife managed to breath again we went and they told us two wait for what was being labled as tests. This whole thing felt like the medical version of meeting in an abandoned garage, and I mean that in the fondest possible way. A short wait later one Doctor Meany (I swear she's very nice) comes in and has us follow her as she looks around for an empty room. She then explains that she glanced at our CT scan and that the mass in Cambria's stomach greatly resembles a Cancer called Neuroblastoma. She proceeds to explain in admirable detail (considering this was completely off schedule and she has a very busy profession) that this is a very treatable form of Cancer and that she has a bunch of experience with it. She said a great many encouraging things, however the same four words kept replaying in my wife's head and mine: "your daughter has Cancer".
In summation: Over the course of 24 hours we have had a checkup, sonogram, CT scan, and meet with a specialist. Our God is an awesome God.
Mommy: Our first trip to Children's
The next morning we fought our way through DC traffic and got to Children's National, which is HUGE by the way! It makes sense as it's one of the best pediatric hospitals in the country. Cambria did really well with drinking the contrast:
and even did pretty good getting the IV...the only thing that really upset her was the lack of formula. The contrast calmed her enough that she was able to sleep through the CT, which made any sedation unnecessary. Then she was allowed her formula and all was right in her little world. The radiology folks tried to send us along our way, but we hadn't heard more from our pediatrician, so we called her, and she said to “hangout for a little while, she was working on something” So we took a stroll around the hospital, which Cambria thought was a BLAST as there were lots of strangers to coo at her and tell her how adorable she was (her favorite activity next to eating)
Then we got a call telling us to meet someone up in *gulp* oncology. Now, this wasn't a formal appointment, it was just something our pediatrician was able to rig... but this really sweet doctor named Dr. Meany came out, and had us follow her back where she was able to wrangle a room for us to talk in. There she told us that she only got a "quick glance" at the CT so far, and it could be a number of things, but worst case, if it *was* cancer, it had a lot in common with something called Neuroblastoma, which luckily is super treatable and they can make it "gone for good." She also did a quick exam, and she told us that it was "shocking and impressive" that our pediatrician had noticed the mass in such a happy baby with no symptoms. Now, as much as everyone was saying "we don't know what this is", the fact that the only possibility they named was cancer had definitely freaked us out.
While we were there, she also wanted to start a urine test... which for a 4 month old is a pretty funny process. You literally put an absorbent pad in her diaper and hope you have good timing. That's it. (Very complicated and technical procedure!)
The only thing for us to do at this point, was to go home and wait for the doctors to look at the CT and get the urine results.
Tuesday, November 19, 2013
Dad: Cambria's 4 month Checkup
So I realize that everyone knows what a check up is, but I'm going to describe it anyway just to point out my perspective going into my daughter's check-up on November 20th. You go see the nice doctor with peeling Disney characters on the walls, she tells you that everyone is healthy and sends you on your marry way. If it wasn't for the immunizations it be a bit of a waste of time.
Anyway, we go to her 4 month appointment, Cambria decided that she wanted to eat right before, so I'm running a bit late...whatever. The nice nurse weighs her and, shocker, she's massive. I don't mean like sumo baby, but large none the less. The nurse leaves and her pediatrician (Dr. Anlage) pops in and does the usual routine. We love our pediatrician, because she's amazing. ((Ok, side note, I have ADD and as a result you might find some of my writings slightly...scattered.)) So, she pokes around Cambria saying the usual: "heart beat sounds good", "yeah your a happy little girl" which is mainly cause she giggles a lot "what's this?". At which point me and my wife do a triple take, because that last one wasn't on the expected list. She spends the next minute or two identifying each organ in turn in the area and recognizing the fact that there seems to be something new...what? new? what? She gives us the this is probably nothing spiel but we should get a look at it with a sonogram.
So after Cambria got a couple of immunization shots we left the office and called the sonogram people. Before leaving the building we gave a call to the sonogram place (which happens to be 5 doors down the hall). I told the nice lady that we needed a sonogram, and we were in the area if they had a moment. I was rather shocked to find out that they did, so we headed over and less then an hour after my baby girl's examination we were preping her for a sonogram (praise The Good Lord). I go back and forth from freaking out and figuring that this is nothing really significant just some i's to dot and t's to cross. However, when we looked at the sonograms computer interface and seeing that they took almost twice as many pictures of Cambria's stomach than they had the other clients of that day. So after Cambria freaked the nice tech's out because of how...angry...she gets when she's hungry (they confessed to thinking that they were torturing her), we headed back and saw our pediatrician.
I know this is long winded, but it was a long 2 hours. Anyway, the nurse put us in the Cars room and we waited for what I'm pretty sure was an eternity (maybe 10 minutes) for Anlage to come back and tell us what the sonogram discovered. She tells us that they found it, it is weird and we need to go to Children's National in DC for more tests. Which is, again, not what a parent wants to hear. Anlage calls, gets us an appointment for a TC scan for 18 hours later. It's simultaneously scary and comforting when Doctors move quickly.
In summation: Our Doctor found a very small thing inside a very small girl with nothing but the use of her thumb. We got a sonogram and scheduled a CT scan in less than 2 hours. Today our God is an awesome God because he gave us Doctor Anlage.
Anyway, we go to her 4 month appointment, Cambria decided that she wanted to eat right before, so I'm running a bit late...whatever. The nice nurse weighs her and, shocker, she's massive. I don't mean like sumo baby, but large none the less. The nurse leaves and her pediatrician (Dr. Anlage) pops in and does the usual routine. We love our pediatrician, because she's amazing. ((Ok, side note, I have ADD and as a result you might find some of my writings slightly...scattered.)) So, she pokes around Cambria saying the usual: "heart beat sounds good", "yeah your a happy little girl" which is mainly cause she giggles a lot "what's this?". At which point me and my wife do a triple take, because that last one wasn't on the expected list. She spends the next minute or two identifying each organ in turn in the area and recognizing the fact that there seems to be something new...what? new? what? She gives us the this is probably nothing spiel but we should get a look at it with a sonogram.
So after Cambria got a couple of immunization shots we left the office and called the sonogram people. Before leaving the building we gave a call to the sonogram place (which happens to be 5 doors down the hall). I told the nice lady that we needed a sonogram, and we were in the area if they had a moment. I was rather shocked to find out that they did, so we headed over and less then an hour after my baby girl's examination we were preping her for a sonogram (praise The Good Lord). I go back and forth from freaking out and figuring that this is nothing really significant just some i's to dot and t's to cross. However, when we looked at the sonograms computer interface and seeing that they took almost twice as many pictures of Cambria's stomach than they had the other clients of that day. So after Cambria freaked the nice tech's out because of how...angry...she gets when she's hungry (they confessed to thinking that they were torturing her), we headed back and saw our pediatrician.
I know this is long winded, but it was a long 2 hours. Anyway, the nurse put us in the Cars room and we waited for what I'm pretty sure was an eternity (maybe 10 minutes) for Anlage to come back and tell us what the sonogram discovered. She tells us that they found it, it is weird and we need to go to Children's National in DC for more tests. Which is, again, not what a parent wants to hear. Anlage calls, gets us an appointment for a TC scan for 18 hours later. It's simultaneously scary and comforting when Doctors move quickly.
In summation: Our Doctor found a very small thing inside a very small girl with nothing but the use of her thumb. We got a sonogram and scheduled a CT scan in less than 2 hours. Today our God is an awesome God because he gave us Doctor Anlage.
Mommy: Cambria's 4 month Checkup
This all started at her 4 month checkup on November 19th, when her pediatrician noticed something 'odd' in her abdomen during the normal exam. She gave us an order for an abdominal sonogram and told us to make and appointment. There happened to be a radiology lab in the same complex, and when we called we mentioned that we were in the building in case they had availability then. It just so happened,they had a bit of time between patients and they would see us immediately. They took quite a few images, and then sent us back to our pediatrician. This was where Derek and I started to get a bit nervous. We went back into one of the exam rooms, and a few minutes later Dr. Anlage popped in and explained that the sonogram showed that there was a mass about 6 cm long on her left side. She said there was no way to know yet what it was, and that she was on the phone with Children's National Medical Center in DC "working her way up to the boss" to get us a CT appointment for the next day. After she got through she told us that we may be there for an hour or two, or we may end up seeing specialist after specialist so we should be prepared to be there all day.
Also, Cambria has gotten SUPER interactive by now, so this video was literally taken at this appointment, after the nurse came in to weigh her, but before we saw her pediatrician:
Monday, November 18, 2013
How You Can Help
We are still working out the logistics of how this whole thing works. For now, here's how you can help:
First of all, pray. We know the Lord loves Cambria even more than we do, which feels almost impossible and seriously comforting.
Secondly, head over HERE to our YouCaring page and donate (or donate below). At just 4 months old, Cambria is sure to amass serious medical bills. We are not exactly sure of how much everything will cost after health insurance, but we know there will be a financial burden on the family. We will also have to be out of work through some of her treatment and there are standard bills that will still need to be covered.
There's no other way to say it, this sucks. But her parents have been blessed beyond understanding with all the things that have happened that increase Cambria's chances of being done with this as soon as possible, with as little pain as possible.
First of all, pray. We know the Lord loves Cambria even more than we do, which feels almost impossible and seriously comforting.
Secondly, head over HERE to our YouCaring page and donate (or donate below). At just 4 months old, Cambria is sure to amass serious medical bills. We are not exactly sure of how much everything will cost after health insurance, but we know there will be a financial burden on the family. We will also have to be out of work through some of her treatment and there are standard bills that will still need to be covered.
There's no other way to say it, this sucks. But her parents have been blessed beyond understanding with all the things that have happened that increase Cambria's chances of being done with this as soon as possible, with as little pain as possible.
Our Story
Cambria was a normal, happy 4 month old going to her 4 month checkup when our world changed.
This was not a story we expected to be a part of. When this all started we still thought pediatric cancer was something rare - something from books and TV.
We didn't even realize babies could have cancer.
What Cambria has is called a “Neuroblastoma”, the most common infantile cancer. I'm updating this page now that Cambria is done with treatment, and approaching one year of clear scans. We have been SO blessed!
Mommy's Perspective:
- 4 Month Checkup
- Our First Trip To Children's
- The First Day Of Many Phone Calls
- Biopsy Day
- It's Official... Neuroblastoma - aka Holy Cow Our Baby Has Cancer
Daddy's Perspective:
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