What I'm about to say is incredibly ridiculous and so I should apologize in advance, but in many ways, I was more comfortable during the first phase, the phase where she still had cancer, than I am now that she has no cancer at all. At least then the risk of relaps didn't exist.
98% of children are able to reach remission by the 29th day of treatment. Not all of them come out MRD negative, but for all intents and purposes, they (mostly) all reach remission. It is AFTER remission that things have a greater potential to go south. If ALL relapses the treatment required goes way up and the rate of survival goes way down. I'm not telling you this to ruin your day, I'm telling you because it's important to understand that Brooklyn still has a very long and scary road ahead of her. The first year after remission poses the greatest risk of relapse and in five years, if relapse has not occurred then she will be deemed "cured". She will be 7.5 at that time. Until then we really have no other option but to push forward with treatment and pray like hell that it doesn't come back.
The cure rate in the US currently lies somewhere between 90% and 95%. Reading that I'm sure you're thinking "great odds!", however upon hearing that my kid had cancer my mind went from "Yay, my kid has a 95% chance of surviving this thing!" to "Holy shit, there is a 5% chance my kid might die from this thing." and let me tell you, that is a very dark and ugly place to let your mind wander. Like my husband says "it comes in waves" and for the most part it's easy to stay optimistic about everything. But once in a blue moon you get caught at a vulnerable moment and your thoughts get the better of you.
If I may be frank, I fucking hate what this disease has done to our family. I hate that this disease has come after my kid, and I hate the fact that the delusions I have of my kids forever and always being happy, healthy and outliving me have been crushed like this. I can tell you with 100% certainty that the absolute most horrifying thing in the world is to be faced with your child's own mortality. No one should ever have to experience that.
I know that we will get through this, and that one day this whole nightmare will be just a distant memory. Brooklyn is too strong willed and hard headed to fail. But right now it feels like we are walking a tight rope and I am not comforted at all by that.
Wednesday, February 27, 2013
Monday, February 25, 2013
Thank You, Thank You, Thank You
So, for every single card, every Facebook message, every meal, every care package sent to brighten Brooklyn's day, every volunteer, every hospital visit, every good thought and every prayer- thank you. From the bottom of our hearts, thank you.
The doctors will save her life, but you will surely save her spirit and for that I am eternally grateful.
Thursday, February 21, 2013
Phase Two: DELAYED
This morning Brooklyn headed into Children's to begin her second phase of chemotherapy only to be told that she was once again neutropenic. Great. Her ANC had gone down from 3500 to 410. It's incredibly frustrating, because it means we have to be obsessively careful again. She hasn't been on any meds in a week but some quick research shows that chemo can be cumulative, so she is likely responding to her last round of vincristine.
So. NEXT week we begin phase two. With any hope, an extra week with no meds will help her immune system rebuild itself. I guess we will just take the opportunity to enjoy another week without any symptoms or side effects. What an anticlimactic day.
So. NEXT week we begin phase two. With any hope, an extra week with no meds will help her immune system rebuild itself. I guess we will just take the opportunity to enjoy another week without any symptoms or side effects. What an anticlimactic day.
Wednesday, February 20, 2013
More Good News for BK
One thing I didn't mention in my previous post regarding Brooklyn's remission was her Mass Residual Disease or MRD. The MRD is basically a test where they take Brooklyn's bone marrow and look at it under a really, really strong microscope to see if there is even the smallest fraction of a percentage of disease left. All of Brooklyn's test results looked good except we wouldn't find out about the MRD until days later. Well today I got the call from our case manager that Brooklyn's bone marrow came back MRD negative, meaning zero cancer remains in Brooklyn's body. This is a great thing on many levels. First off, it means that she is at a lower risk level for relapse. Additionally, that lower risk level qualifies her for a study which will put her on a less chemotherapy, meaning less side effects in the short and long term.
So far, Brooklyn has been off of her meds for a total of six days. Honestly, I noticed a difference after less than 24 hours. She was smiling more and just seemed overall happier. After about three days we noticed her stomach was going down. Her face is still round and chubby, but her normal clothes are fitting her again. Her appetite is almost completely back to that of a two year olds. She no longer clamors for food morning, noon and night. Her walking has improved, although she still needs help standing up to do so. I have noticed a definite tremor developing in her hands, we think its from the weekly Vincristine treatments, which she will no longer be recieving.
The best thing of all? Brooklyn is laughing and playing again
Really, I've never heard her giggle as much as she has this week. She laughs at everything. It's an amazing sound to hear in a house that has been virtually silent for over a month.
Tomorrow, she heads in the Children's where we will get her plan for phase two, Consolidation. She will still be on a chemotherapy regimen, but it won't be nearly as aggressive as the first phase was. I'm growing anxious for the next six months to be over so that we can move into maintenance and she can be a normal kid again.
So far, Brooklyn has been off of her meds for a total of six days. Honestly, I noticed a difference after less than 24 hours. She was smiling more and just seemed overall happier. After about three days we noticed her stomach was going down. Her face is still round and chubby, but her normal clothes are fitting her again. Her appetite is almost completely back to that of a two year olds. She no longer clamors for food morning, noon and night. Her walking has improved, although she still needs help standing up to do so. I have noticed a definite tremor developing in her hands, we think its from the weekly Vincristine treatments, which she will no longer be recieving.
The best thing of all? Brooklyn is laughing and playing again
Tomorrow, she heads in the Children's where we will get her plan for phase two, Consolidation. She will still be on a chemotherapy regimen, but it won't be nearly as aggressive as the first phase was. I'm growing anxious for the next six months to be over so that we can move into maintenance and she can be a normal kid again.
Friday, February 15, 2013
The Best Thing I've Ever Heard. Ever.
Will you marry me.
It's a girl.
You got the job.
In this order, these are the three greatest things I have ever heard. Until today, that is. Today I was informed that Brooklyn's bone marrow shows no signs of cancer.
Brooklyn is in remission.
For the first time since we landed at Children's I walked the halls with a huge smile on my face. I probably looked like an idiot. When I got on the elevator I didn't even press the button. I just stood there with a dopey grin on my face. Then Brooklyn shrieked something about a grilled cheese sandwich at me and I realized we hadn't moved in five minutes.
Other good things? Brooklyn gets to take a week long break from any medications before we start the second phase. Her ANC (immune system) went from 240 to 3500 (anything between 500 and 1000 is considered good). She is no longer neutropenic. All of her blood counts were within normal range. We can leave the house again.
AND
NO MORE STEROIDS!!!
We still have a long road ahead of us. ALL is an insidious disease and without further treatment will absolutely return. Brooklyn will continue chemotherapy over the next two years. But this week we are celebrating. This is a victory for her, for us, and I am so proud of her strength.
It's a girl.
You got the job.
In this order, these are the three greatest things I have ever heard. Until today, that is. Today I was informed that Brooklyn's bone marrow shows no signs of cancer.
Brooklyn is in remission.
For the first time since we landed at Children's I walked the halls with a huge smile on my face. I probably looked like an idiot. When I got on the elevator I didn't even press the button. I just stood there with a dopey grin on my face. Then Brooklyn shrieked something about a grilled cheese sandwich at me and I realized we hadn't moved in five minutes.
Other good things? Brooklyn gets to take a week long break from any medications before we start the second phase. Her ANC (immune system) went from 240 to 3500 (anything between 500 and 1000 is considered good). She is no longer neutropenic. All of her blood counts were within normal range. We can leave the house again.
AND
NO MORE STEROIDS!!!
We still have a long road ahead of us. ALL is an insidious disease and without further treatment will absolutely return. Brooklyn will continue chemotherapy over the next two years. But this week we are celebrating. This is a victory for her, for us, and I am so proud of her strength.
Cross Everything!
Today we are headed in to children's for a bone marrow draw and a lumbar puncture to determine how much (if any) disease remains. I am dreading today if for no other reason than the fact that I have to figure out a way to keep her unfed until noon! Even I'd go a little crazy after about 10 without eating, I have no idea how to go about keeping a toddler from making a scene. She's going to hate everyone by the end of today. She has no idea how significant this day is for her.
Anyway, procedure at noon, and hopefully her bloodwork numbers will be on the rise. Last week she was really neutropenic, so it would be nice to at least see a change there. Cross your fingers and toes, pray hard, send vibes and put it out there into the universe that our girl is in remission.
Silver lining?
Last day of phase one!!! Suck it steroids!
Anyway, procedure at noon, and hopefully her bloodwork numbers will be on the rise. Last week she was really neutropenic, so it would be nice to at least see a change there. Cross your fingers and toes, pray hard, send vibes and put it out there into the universe that our girl is in remission.
Silver lining?
Last day of phase one!!! Suck it steroids!
Wednesday, February 13, 2013
Yikes!
Yesterday morning Avi went into Brooklyn's room and found her laying on the floor for no good reason. He picked her up, changed her diaper and put her back to bed. Then after nap time I went in to wake her up and found her laying on the floor again. It startled me, but then she lifted her head and in a cheery voice chimed "Hi, mama!".
What I think is going on; We bought Brooklyn a play kitchen for her room last week in a bid to keep her occupied during these weeks of confinement. Until recently she's wanted very little to do with it (again, the steroids have made her indifferent to all things fun). The other night, before heading to bed myself, I popped into her room to check on her and she was up playing at her kitchen claiming to be baking challah bread! So I picked her up, put her back into her bed and left the room.
It is my belief that Brooklyn is getting out of bed to play at her kitchen and then, because of her weight gain, is unable to climb back into bed. I guess she doesn't call for us because the little bugger knows she's not supposed to be out of bed in the first place. She then gets tired, because she can't stand up for very long, and decides to finish up her sleep on her rug.
Under normal circumstances I'd be a hard ass about this and would discipline her for getting out of bed, but these circumstances are far from normal and this whole experience has turned me into a huge softy (brownies for breakfast? Sure!). So rather than trying to keep her in bed at night, we've just placed a step stool near her bed so that she can come and go as she pleases. I'm certainly not going to deter the poor kid from playing even if it is at 3 o'clock in the morning.
We currently have FOUR doses of dexamethasone left in this phase (but whose counting?). Friday seriously can not come fast enough.
What I think is going on; We bought Brooklyn a play kitchen for her room last week in a bid to keep her occupied during these weeks of confinement. Until recently she's wanted very little to do with it (again, the steroids have made her indifferent to all things fun). The other night, before heading to bed myself, I popped into her room to check on her and she was up playing at her kitchen claiming to be baking challah bread! So I picked her up, put her back into her bed and left the room.
It is my belief that Brooklyn is getting out of bed to play at her kitchen and then, because of her weight gain, is unable to climb back into bed. I guess she doesn't call for us because the little bugger knows she's not supposed to be out of bed in the first place. She then gets tired, because she can't stand up for very long, and decides to finish up her sleep on her rug.
Under normal circumstances I'd be a hard ass about this and would discipline her for getting out of bed, but these circumstances are far from normal and this whole experience has turned me into a huge softy (brownies for breakfast? Sure!). So rather than trying to keep her in bed at night, we've just placed a step stool near her bed so that she can come and go as she pleases. I'm certainly not going to deter the poor kid from playing even if it is at 3 o'clock in the morning.
We currently have FOUR doses of dexamethasone left in this phase (but whose counting?). Friday seriously can not come fast enough.
Saturday, February 9, 2013
One More Week, One More Week, One More Week
I keep repeating this to myself. Brooklyn has one more week left in the induction phase of her cancer treatment. Yesterday she received her last shot of Vincristine in-clinic. With any hope, next Friday I will be able to give her her last dose of steroids and I can reclaim my kid.
She's not herself. Aside from the mood swings and food obsession, she can't even stand up on her own anymore. Walking has become nearly impossible for her. Every time I try to make her walk she takes a few steps and then falls to the ground. I suspect this has something to do with the fact that she's gained nearly 25% of her own body weight in only two weeks. Of course, as with everything, the steroids are to blame. Needless to say I am counting down the hours until I can show them the door. This is not to say that we will be done with the Dexamethasone for good. But we will hopefully never have to do another 30 day stint again. More like a week here and a week there.
To date, I would have to say that this round of chemo has been the most difficult on her body. She's been complaining of back pain and mouth pain. The oncologist says this is typical and prescribed her Tylenol with codeine which seems to be helping a bit. The poor thing spends most of her days sitting in her chair watching cartoons on the iPad and eating snacks. I've at least managed to wean her off of the pizza for now and she's since moved on to the far more healthy brown rice and avocado sushi. At first I was buying premade sushi from our local Whole Foods but it became difficult for me to get out of the house to buy it and Whole Foods sushi just seems a tad too pricey for a two year old who can consume four avocado rolls in one sitting. So I've since learned to make them at home. Its actually kind of nice because I can make them ahead of time and I don't even have to turn on the oven. So far my efforts to persuade her towards the healthier food appear to be paying off because on Friday her weight had not gone up from the previous weeks weigh in.
I must say, I miss that little girl. I'm very much looking forward to having her old self back and eagerly awaiting the end of this phase. It has been difficult, although it's been such an emotional whirlwind that I can barely remember any specific moments. That's probably a good thing.
Our sweet girl-
She's not herself. Aside from the mood swings and food obsession, she can't even stand up on her own anymore. Walking has become nearly impossible for her. Every time I try to make her walk she takes a few steps and then falls to the ground. I suspect this has something to do with the fact that she's gained nearly 25% of her own body weight in only two weeks. Of course, as with everything, the steroids are to blame. Needless to say I am counting down the hours until I can show them the door. This is not to say that we will be done with the Dexamethasone for good. But we will hopefully never have to do another 30 day stint again. More like a week here and a week there.
To date, I would have to say that this round of chemo has been the most difficult on her body. She's been complaining of back pain and mouth pain. The oncologist says this is typical and prescribed her Tylenol with codeine which seems to be helping a bit. The poor thing spends most of her days sitting in her chair watching cartoons on the iPad and eating snacks. I've at least managed to wean her off of the pizza for now and she's since moved on to the far more healthy brown rice and avocado sushi. At first I was buying premade sushi from our local Whole Foods but it became difficult for me to get out of the house to buy it and Whole Foods sushi just seems a tad too pricey for a two year old who can consume four avocado rolls in one sitting. So I've since learned to make them at home. Its actually kind of nice because I can make them ahead of time and I don't even have to turn on the oven. So far my efforts to persuade her towards the healthier food appear to be paying off because on Friday her weight had not gone up from the previous weeks weigh in.
I must say, I miss that little girl. I'm very much looking forward to having her old self back and eagerly awaiting the end of this phase. It has been difficult, although it's been such an emotional whirlwind that I can barely remember any specific moments. That's probably a good thing.
Our sweet girl-
Thursday, February 7, 2013
The Sobering Reality
Do you know when the reality set in for me that our lives were about to change in a massive way? It was the day that the pharmacist at Walgreens set Brooklyn's medication in front of me. I'm certain I looked completely stunned as the woman went over every single bottle's purpose and dosage. I stood wide eyed as she instructed me to shake this one really well, or to give that one on a full stomach. Refrigerate, dissolve in liquid, give this before bed, give that as needed. This was of course after days of watching my kid get poked and prodded and sedated and tested for everything under the sun. I had been emotionally drained, sleep deprived, and shaken to my core by her eventual diagnosis and at that very moment I felt like throwing up. Suddenly Brooklyn required a variety of different medications to keep her alive and her father and I were solely responsible for making sure she received all but one.
Her first five weeks looked like this-
Brooklyn takes steroids twice a day, every day. The steroids are very harsh on her stomach so along with that she also needs an antacid. Once a day she takes an anti-fungal and a laxative. On Saturday and Sunday she receives an antibiotic four times. Every Friday she receives a shot of Vincristine, her chemotherapy, at the clinic. Once daily I'm required to flush her PICC line with saline and then heparin to ensure that it doesn't attempt to clot and at the beginning of weeks 1,2 and 5 she has chemo injected into her spine. This her life. Every day, for 29 days.
Now, this is an intimidating schedule to anyone. However, I will say that after a week of successfully NOT overdosing my kid, we both settled in and now it has just become routine for us. Brooklyn was fairly resistant at first, especially when we were still in the hospital, but as of late she's been taking her meds with little incident.
When the nurse first set that calendar in front of me, I almost laughed at her. I mean, look at it! It is clearly a caricature of itself. Like something you'd see in an SNL sketch. But believe me, that calendar is very real, and its taken on an entirely new purpose now because at this point I know the medications, dosages and times by heart. For me that calendar now represents progress. Every day that I get to X out is one day less in Brooklyn's treatment and one day closer to her being cured for good. I can not tell you how eager I am for the day when our lives do not revolve around that stupid calendar, but for now it serves as a visual reminder for how far we have come and how much further we have left to go.
Her first five weeks looked like this-
Brooklyn takes steroids twice a day, every day. The steroids are very harsh on her stomach so along with that she also needs an antacid. Once a day she takes an anti-fungal and a laxative. On Saturday and Sunday she receives an antibiotic four times. Every Friday she receives a shot of Vincristine, her chemotherapy, at the clinic. Once daily I'm required to flush her PICC line with saline and then heparin to ensure that it doesn't attempt to clot and at the beginning of weeks 1,2 and 5 she has chemo injected into her spine. This her life. Every day, for 29 days.
Now, this is an intimidating schedule to anyone. However, I will say that after a week of successfully NOT overdosing my kid, we both settled in and now it has just become routine for us. Brooklyn was fairly resistant at first, especially when we were still in the hospital, but as of late she's been taking her meds with little incident.
When the nurse first set that calendar in front of me, I almost laughed at her. I mean, look at it! It is clearly a caricature of itself. Like something you'd see in an SNL sketch. But believe me, that calendar is very real, and its taken on an entirely new purpose now because at this point I know the medications, dosages and times by heart. For me that calendar now represents progress. Every day that I get to X out is one day less in Brooklyn's treatment and one day closer to her being cured for good. I can not tell you how eager I am for the day when our lives do not revolve around that stupid calendar, but for now it serves as a visual reminder for how far we have come and how much further we have left to go.
Tuesday, February 5, 2013
How we Got Here
On a Monday, I took Brooklyn and Indie to a well visit to the pediatricians. Dr. Jena looked Indie over, gave me a thumbs up and handed her back to me. Then she moved on to Brooklyn. She did all of the things to Brooklyn that doctors do. She listened to her heart, listened to her breathing, looked in her ears, eyes and mouth. Felt around her stomach for a bit... felt around some more... and then a bit more. I could tell something wasn't quite right by the look on her face.
"Now, you said her appetite has been down?" She asked glancing up at me. "Yeah, she's been on a bit of a hunger strike." I joked. The doctor hummed and hahed about Brooklyn for a few more minutes before declaring that she wanted to do an iron test. "Does she look a bit pale to you?" She asked. Who could tell really? I mean, it is winter (let's forget the fact that we live in Southern California). So in comes the nurse with the finger prick test. She leaves with the blood just as quickly as she came. Then she returns with a fretful look. "I want to do the test again, it was really low." So she gathers another sample and of course the results are the same. I am left shaking my head. I should really push more meat on the child, she obviously needs a better diet. This is why my generations parents forced us to sit and eat until our food was done. Parenting with a gentle hand is clearly a fools game.
Tuesday I take Brooklyn in for a more comprehensive blood draw. It will probably show that her mother lets her eat nothing but crap, right? Oh, I'm going to get a talking to by her pediatrician over this one. We head home, I push it from my mind.
Wednesday Dr. Jena calls. She's worried. Brooklyn's blood work doesn't look good. Panic sets in. We are instructed to go over to Children's hospital where they will HAVE A BED WAITING FOR HER THERE. I call my mother in law in a complete panic and we drive Brooklyn and the baby to the hospital. At the time we are told that it was one of two things; a viral infection, which will go away on its own. Or leukemia. I choose to believe it's viral since she has been fighting a cough for a few weeks.
On Thursday morning Brooklyn is sedated and given a bone marrows draw. Her dad is present for the procedure while I sit at home with the baby. While I'm driving in I have a very sudden realization. The bruises. Brooklyn had been coming home from school with bruised legs for months. The bruises would go away and then the very next week they would return. She had the bruising long before she ever had the cough. Oh my god, it's not the virus, it's cancer. That night it is confirmed by the oncologist. Our daughter will need to undergo chemotherapy. We are heartbroken.
Friday morning, Brooklyn is once again sedated and given a PICC line which will act as a direct route to her vein, meaning no more needles for the next 4-6 months. She is also given a lumbar puncture to check for cancer cells in the spinal fluid and to administer a small amount of chemo into the spine (cancer cells apparently like to hide out in the spine.).
By Friday evening, Brooklyn is receiving her first round of chemotherapy.
There is a moral here. Go to your well visits, people. Looking back, Brooklyn was barely symptomatic. Her immune system was still in tact, her blood counts were declining, but she was still within the range of normal. Because of the stealthy detective work of our top notch pediatrician, she was able to piece together that Brooklyn was not quite right before she actually got sick. It is this simple fact that our daughter will be strong enough to withstand the rigors of her cancer treatment, that she will recover faster, and that her odds of survival are greater.
"Now, you said her appetite has been down?" She asked glancing up at me. "Yeah, she's been on a bit of a hunger strike." I joked. The doctor hummed and hahed about Brooklyn for a few more minutes before declaring that she wanted to do an iron test. "Does she look a bit pale to you?" She asked. Who could tell really? I mean, it is winter (let's forget the fact that we live in Southern California). So in comes the nurse with the finger prick test. She leaves with the blood just as quickly as she came. Then she returns with a fretful look. "I want to do the test again, it was really low." So she gathers another sample and of course the results are the same. I am left shaking my head. I should really push more meat on the child, she obviously needs a better diet. This is why my generations parents forced us to sit and eat until our food was done. Parenting with a gentle hand is clearly a fools game.
Tuesday I take Brooklyn in for a more comprehensive blood draw. It will probably show that her mother lets her eat nothing but crap, right? Oh, I'm going to get a talking to by her pediatrician over this one. We head home, I push it from my mind.
Wednesday Dr. Jena calls. She's worried. Brooklyn's blood work doesn't look good. Panic sets in. We are instructed to go over to Children's hospital where they will HAVE A BED WAITING FOR HER THERE. I call my mother in law in a complete panic and we drive Brooklyn and the baby to the hospital. At the time we are told that it was one of two things; a viral infection, which will go away on its own. Or leukemia. I choose to believe it's viral since she has been fighting a cough for a few weeks.
On Thursday morning Brooklyn is sedated and given a bone marrows draw. Her dad is present for the procedure while I sit at home with the baby. While I'm driving in I have a very sudden realization. The bruises. Brooklyn had been coming home from school with bruised legs for months. The bruises would go away and then the very next week they would return. She had the bruising long before she ever had the cough. Oh my god, it's not the virus, it's cancer. That night it is confirmed by the oncologist. Our daughter will need to undergo chemotherapy. We are heartbroken.
Friday morning, Brooklyn is once again sedated and given a PICC line which will act as a direct route to her vein, meaning no more needles for the next 4-6 months. She is also given a lumbar puncture to check for cancer cells in the spinal fluid and to administer a small amount of chemo into the spine (cancer cells apparently like to hide out in the spine.).
By Friday evening, Brooklyn is receiving her first round of chemotherapy.
There is a moral here. Go to your well visits, people. Looking back, Brooklyn was barely symptomatic. Her immune system was still in tact, her blood counts were declining, but she was still within the range of normal. Because of the stealthy detective work of our top notch pediatrician, she was able to piece together that Brooklyn was not quite right before she actually got sick. It is this simple fact that our daughter will be strong enough to withstand the rigors of her cancer treatment, that she will recover faster, and that her odds of survival are greater.
GERMS!
I have never in my life been a germaphobe. I always subscribed to the idea that germs were good for you, and getting sick was a part of life. I passed Brooklyn around at parties when she was a baby, was a heavy believer in the three second rule, and can probably count the number of times I've pulled out the thermometer on one hand. Now, during what I'm told is one of the worst flu seasons to date, I find myself in the position where even a common cold could land either one of my kids in the hospital for days. It would not be good.
My obsessiveness isn't exactly out of line here. We ARE in fact currently living through a nasty cold and flu season, and Brooklyn IS currently neutropenic (meaning she doesnt possess the immune system to defend herself from illness) Life would be exponentially easier if everyone stayed out of the hospital for now. I just hope I'm not passing this germ crazy mentality on to my kids because its only temporary, I swear. The moment tax season is over (aka the end of flu season) and Brooklyn's immune system is back up, they can return to eating dirt at the playground. But for now, we live in a bubble and anyone who wants to come in better come packin' a flu shot and freshly washed hands.
Suddenly, I've become neurotic about cleanliness. In our house we wash our hands 100 times a day now. I obsessively wipe down all the surfaces, door knobs, and light switches with Clorox wipes. I wash our linens and blankets so frequently my washing machine can hardly keep up. I actually MOP after having guests, for fear that something icky may have been tracked into my home. Leaving the house has become such an epic event for us that its hardly even worth it anymore. Today I left the house for Indie's doctors visit armed with hospital masks, hand sanitizer and extra paper towels just for opening doors and pushing elevator buttons. Every time I pay for something I can't help but envision all of the germs that are being exchanged from hand to hand along with the money. I feel like I'm riding on the crazy train. Next stop: Tin foil hat town!
Saturday, February 2, 2013
Week Three
Yesterday was the beginning of week three of Brooklyn's treatment. We started the day at Children's Hospital where she was given a blood draw, blood transfusion and a shot of Vincristine aka her chemo. Eight hours later we headed home. I'm not entirely sure why all of that took so long, but by the time we got home we were both exhausted. Brooklyn went straight to bed and didn't even wake up to eat at 3am as she has been doing for the past week.
So far the child who, up until her diagnosis had not gained a single ounce in six months, has gained four pounds in just two weeks. My once petite little girl now sports a moon shaped face and an enormous belly that is currently testing the tensile strength of her own clothing. I've been assured by the doctor that A) it is a common side effect of the steroids she is taking on a daily basis. B) most of her weight gain is likely water retention and is therefore temporary and C) any legitimate weight gain she does encounter will serve as the great equalizer when she reaches the point in her 2+ years of treatment where her appetite declines. I'm not worried, but it's a little shocking sometimes when I look at her. After her blood transfusion yesterday she became very rosey cheeked and resembled a fat little cherub with her curls surrounding her chubby little face. Speaking of curls, hers are definitely beginning to thin out a bit. I'm finding stray hairs all over the place. I know we will eventually have to pull the plug and cut her hair but for now I am enjoying their final days. Her dad has promised to shave his head when the time come in a movement of solidarity.
Another lovely side effect of the steroids Brooklyn has to take is mood shifts. Sometimes it's difficult to tell where the two year old ends and the steroids begin. She's definitely keeping me on my toes as I never quite know what will set her off next. If I tell her no, she will typically respond with a blood curdling scream, and then she will concede. But never without a protest.
All in all we are surviving. I knew this portion of her treatment would be the most difficult and so I braced myself. It feels awful to see your child feeling crummy, and even worse to not be able to explain why. But she is a tough little chick whose determination is shining right through all of the drugs and doctor visits and mood swings.
So far the child who, up until her diagnosis had not gained a single ounce in six months, has gained four pounds in just two weeks. My once petite little girl now sports a moon shaped face and an enormous belly that is currently testing the tensile strength of her own clothing. I've been assured by the doctor that A) it is a common side effect of the steroids she is taking on a daily basis. B) most of her weight gain is likely water retention and is therefore temporary and C) any legitimate weight gain she does encounter will serve as the great equalizer when she reaches the point in her 2+ years of treatment where her appetite declines. I'm not worried, but it's a little shocking sometimes when I look at her. After her blood transfusion yesterday she became very rosey cheeked and resembled a fat little cherub with her curls surrounding her chubby little face. Speaking of curls, hers are definitely beginning to thin out a bit. I'm finding stray hairs all over the place. I know we will eventually have to pull the plug and cut her hair but for now I am enjoying their final days. Her dad has promised to shave his head when the time come in a movement of solidarity.
Another lovely side effect of the steroids Brooklyn has to take is mood shifts. Sometimes it's difficult to tell where the two year old ends and the steroids begin. She's definitely keeping me on my toes as I never quite know what will set her off next. If I tell her no, she will typically respond with a blood curdling scream, and then she will concede. But never without a protest.
Leukemia for dummies
Ok, so imagine that you are a red blood cell, and you share a three bedroom apartment in a prime location in the city with your buddies White blood cell and Platelet. You all make awesome roommates because everyone is good at tackling different tasks. You make sure the place is always clean, White blood cell is really great at protecting the apartment, and platelet is a champ at home repair.
Now, at some point along the way, White blood cell starts hanging out with a rough crowd. More White blood cells, but these guys are bigger and also a little strange looking. Eventually WBC invites a few of his friends over. Then they invite more friends over, and then those guys invite their friends over. Eventually there is no place to sit anymore because these giant freaky white blood cells are taking over your apartment. Eventually Platelet says "Eff this!" and stops fixing things around the house, and there are now so many white blood cells trickling through the door that it becomes impossible to clean.
After a very short time, it becomes clear that there is only one definitive way to get rid of your shitty roommate and all of his unwanted house guests. Kill the White blood cells. Kill them all. It ensures that your prime real estate will continue to exist but there are definite risk factors involved. For one, with all of the WBC's now out of your life there won't be much to stop other crappy house guests from intruding such as Infection, or that d-bag from down the hall Illness. If they get in then they sure as hell won't be leaving without putting up a fight. Additionally, in order to completely eliminate these guys you might need to go to some pretty extreme lengths by using some unconventional poisons. These poisons could very well result in you and Platelets elimination. It's certainly risky, and definitely tough on the existing property, but absolutely necessary.
Now, after about 6 weeks of pumping poison through the window non stop, the WBC's are all dead. The front door is wide open, and the gate is unlocked, but the WBC's are certainly out of your hair. It's time to rebuild. You and Platelet return and find a new room mate. This one is also named White blood cell, but he seems like a nice enough guy and doesn't have a ton of hard partying friends. He's just OK at the security thing, and every once in a while you catch a rogue WBC trying to sneak through the door so intermittently over the next 2-3 years you still have to pump some of that poison in just to keep them away. After that you should be lucky enough to be done with those oafish WBC's for good.
Of course I realize that this analogy is a bit ridiculous. It's honestly the best way I could think of to describe what is currently going on inside Brooklyn's body. She is in fact being rapidly attacked by her own cancerous white blood cells. The goal of phase one is to "kill them all" putting her into remission. Every other subsequent phase is simply in place to keep them away for good.
Now, at some point along the way, White blood cell starts hanging out with a rough crowd. More White blood cells, but these guys are bigger and also a little strange looking. Eventually WBC invites a few of his friends over. Then they invite more friends over, and then those guys invite their friends over. Eventually there is no place to sit anymore because these giant freaky white blood cells are taking over your apartment. Eventually Platelet says "Eff this!" and stops fixing things around the house, and there are now so many white blood cells trickling through the door that it becomes impossible to clean.
After a very short time, it becomes clear that there is only one definitive way to get rid of your shitty roommate and all of his unwanted house guests. Kill the White blood cells. Kill them all. It ensures that your prime real estate will continue to exist but there are definite risk factors involved. For one, with all of the WBC's now out of your life there won't be much to stop other crappy house guests from intruding such as Infection, or that d-bag from down the hall Illness. If they get in then they sure as hell won't be leaving without putting up a fight. Additionally, in order to completely eliminate these guys you might need to go to some pretty extreme lengths by using some unconventional poisons. These poisons could very well result in you and Platelets elimination. It's certainly risky, and definitely tough on the existing property, but absolutely necessary.
Now, after about 6 weeks of pumping poison through the window non stop, the WBC's are all dead. The front door is wide open, and the gate is unlocked, but the WBC's are certainly out of your hair. It's time to rebuild. You and Platelet return and find a new room mate. This one is also named White blood cell, but he seems like a nice enough guy and doesn't have a ton of hard partying friends. He's just OK at the security thing, and every once in a while you catch a rogue WBC trying to sneak through the door so intermittently over the next 2-3 years you still have to pump some of that poison in just to keep them away. After that you should be lucky enough to be done with those oafish WBC's for good.
Of course I realize that this analogy is a bit ridiculous. It's honestly the best way I could think of to describe what is currently going on inside Brooklyn's body. She is in fact being rapidly attacked by her own cancerous white blood cells. The goal of phase one is to "kill them all" putting her into remission. Every other subsequent phase is simply in place to keep them away for good.
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