So, guess who got to blow out her birthday candles today?
Happy birthday, little girl! We are so lucky to have you in our lives. I thank my stars for you every single day.
Saturday, July 20, 2013
HAPPY BIRTHDAY BEAUTIFUL BROOKLYN!
In a very unexpected turn, Brooklyn's blood counts shot up virtually overnight. The doctors were shocked and so was I. They released her early.
So, guess who got to blow out her birthday candles today?
Happy birthday, little girl! We are so lucky to have you in our lives. I thank my stars for you every single day.
So, guess who got to blow out her birthday candles today?
Happy birthday, little girl! We are so lucky to have you in our lives. I thank my stars for you every single day.
Tuesday, July 16, 2013
ADMITTED
It's hard to believe that the six weeks of delayed intensification have come and gone. The day I gave Brooklyn her last chemo pill of the phase I thought we had made it out in one piece. I was incorrect in that assumption
Sunday afternoon I returned home from an overnight with friends to a seemingly happy little girl. At bedtime I noted that she felt warm so I took her temp and it immediately read 101.3 which is pretty much a guaranteed trip to the ER. I decided to wait 20 minutes because the last time she had a fever, it was on vacation, we hauled off to the local clinic and it turned out to be nothing but a cold. The next time I took her temp it was up to 101.8. I called it in, they asked me what phase she was in, I told them delayed intensification and they told me to not waste another minute.
An hour later Brooklyn was curled up in a ball, in a hospital bed, crying and shivering. Medical workers were rushing in and out of the door with various bags and syringes full of fluids. The ER doctor would walk into the room every few minutes, sit in the corner and watch Brooklyn for a period of time with concerned eyes, and then leave again. I'm used to nurses hurrying in and out of a hospital rooms, but the doctors consistent presence made me nervous. I had the very sudden realization that what was happening was very serious and that Brooklyn was declining very quickly. As people rush around us, I lay in her bed with her, stroking her bald head and wiping her tears away, telling her that she would be okay. She kept telling me that she was ready to go home.
At about 4am they moved a sleeping Brooklyn up to the oncology floor, I was greeted by all of the nurses we had come to know during Brooklyn's diagnosis stay six months before. My back went up as we wheeled Brooklyn past the room she had been diagnosed in. If I never see the inside of that room again...
The next morning it was as if nothing had ever happened. Brooklyn was her normal cheeky self again and wanted bacon and eggs. I, however, was a walking zombie who hadn't so much as seen a bed in over 24 hours. We were informed that Brooklyn would need round the clock antibiotics for four days to treat a very fast moving infection, however I have just been informed that her blood counts are low and we should expect to be here for more like 7. It's a little less than pleasant. They have placed Brooklyn in isolation because she has a residual cough from that fluke cold from a few weeks go. So whenever anyone enters our room they have to dress like they are preparing for the black plague. This also means that she can not leave her room. Additionally, because she is under constant observation people walk in and out of the room all day and all night long. Ironically enough there is surprisingly little rest to be had in a place that emphasizes the importance of actually getting rest.
We are obviously where we need to be. I will not complain about Brooklyncurrent situation because we are just so lucky that the doctors and nurses figured out what was up with her and were able to pull her out of it as quickly as they did. I remember at one point during the commotion thinking about what would happen if she continued to decline at the rate she was going and it scared the crap out of me. Her 3rd birthday is on Saturday. She is still expected to be in isolation. My heart breaks for her because she's been so looking forward to blowing out her candles this year. There will be more birthdays, but there will never be another Brooklyn and so I am counting my blessings this week.
Sunday afternoon I returned home from an overnight with friends to a seemingly happy little girl. At bedtime I noted that she felt warm so I took her temp and it immediately read 101.3 which is pretty much a guaranteed trip to the ER. I decided to wait 20 minutes because the last time she had a fever, it was on vacation, we hauled off to the local clinic and it turned out to be nothing but a cold. The next time I took her temp it was up to 101.8. I called it in, they asked me what phase she was in, I told them delayed intensification and they told me to not waste another minute.
An hour later Brooklyn was curled up in a ball, in a hospital bed, crying and shivering. Medical workers were rushing in and out of the door with various bags and syringes full of fluids. The ER doctor would walk into the room every few minutes, sit in the corner and watch Brooklyn for a period of time with concerned eyes, and then leave again. I'm used to nurses hurrying in and out of a hospital rooms, but the doctors consistent presence made me nervous. I had the very sudden realization that what was happening was very serious and that Brooklyn was declining very quickly. As people rush around us, I lay in her bed with her, stroking her bald head and wiping her tears away, telling her that she would be okay. She kept telling me that she was ready to go home.
At about 4am they moved a sleeping Brooklyn up to the oncology floor, I was greeted by all of the nurses we had come to know during Brooklyn's diagnosis stay six months before. My back went up as we wheeled Brooklyn past the room she had been diagnosed in. If I never see the inside of that room again...
The next morning it was as if nothing had ever happened. Brooklyn was her normal cheeky self again and wanted bacon and eggs. I, however, was a walking zombie who hadn't so much as seen a bed in over 24 hours. We were informed that Brooklyn would need round the clock antibiotics for four days to treat a very fast moving infection, however I have just been informed that her blood counts are low and we should expect to be here for more like 7. It's a little less than pleasant. They have placed Brooklyn in isolation because she has a residual cough from that fluke cold from a few weeks go. So whenever anyone enters our room they have to dress like they are preparing for the black plague. This also means that she can not leave her room. Additionally, because she is under constant observation people walk in and out of the room all day and all night long. Ironically enough there is surprisingly little rest to be had in a place that emphasizes the importance of actually getting rest.
We are obviously where we need to be. I will not complain about Brooklyncurrent situation because we are just so lucky that the doctors and nurses figured out what was up with her and were able to pull her out of it as quickly as they did. I remember at one point during the commotion thinking about what would happen if she continued to decline at the rate she was going and it scared the crap out of me. Her 3rd birthday is on Saturday. She is still expected to be in isolation. My heart breaks for her because she's been so looking forward to blowing out her candles this year. There will be more birthdays, but there will never be another Brooklyn and so I am counting my blessings this week.
Friday, May 31, 2013
Delayed Intensification Is the Worst
We are currently four days into Delayed Intensification and already we have experienced a few very unsettling setbacks.
Day 1, Tuesday started off with a lumbar puncture with chemo, a dose of Vincristine and a dose of Doxorubicin. Easy enough, except it took 7 hours of waiting to be done with our scheduled appointment. By the time we got home we were both physically and emotionally drained.
She's been receiving medication four times daily at home. The very first morning, she promptly threw up all of her meds. Today I looked at her prescription and found that I have actually been erroneously under dosing her steroids by half! The nurse had told me to give her the same amount I gave her in the beginning of her treatment, but it turns out they actually doubled the dosage for this one week pulse. I seriously hope this doesn't have a negative effect on her treatment.
THEN!!!!!
Today her dad took her in for a dose of Peg Asparaginase. A drug that has to be given on day four. A drug that she has taken in the past. A drug that the moment it hit her IV today caused this to happen:
My husband sent me this picture in a text message starting with "First of all, she's okay...". Apparently her body built up antibodies the from the first dose of Peg so now she's developed an allergic response to it. The solution? Because it's a drug she absolutely must take, they will give her a modified version. Asparaginase without the Peg, is how it's been explained. The unfortunate bit is that instead of one dose, she'll need SIX! One every other day for the two weeks.
I feel terrible that my little girl went through that and even worse that my husband had to watch it happen. He said that one minute she was just sitting there coloring and then a split second later her face washed out, her arms and legs turned bright red and she was gagging for air. Within seconds the room was filled with a dozen people including three doctors. They gave her an epi pen, IV benadryl and made her sit under observation for the rest of the day.
We were lucky that her medical team was so quick to act, but I think it has shaken us a bit. I thought to myself throughout the afternoon that I had only briefly said goodbye to her when she left for a seemingly routine visit early this morning and all of the "What If's" began to flood my mind again. Brooklyn is sailing through her treatment, but from time to time we are reminded of the reality of what has happened to our child and how scary this disease truly is.
Day 1, Tuesday started off with a lumbar puncture with chemo, a dose of Vincristine and a dose of Doxorubicin. Easy enough, except it took 7 hours of waiting to be done with our scheduled appointment. By the time we got home we were both physically and emotionally drained.
She's been receiving medication four times daily at home. The very first morning, she promptly threw up all of her meds. Today I looked at her prescription and found that I have actually been erroneously under dosing her steroids by half! The nurse had told me to give her the same amount I gave her in the beginning of her treatment, but it turns out they actually doubled the dosage for this one week pulse. I seriously hope this doesn't have a negative effect on her treatment.
THEN!!!!!
Today her dad took her in for a dose of Peg Asparaginase. A drug that has to be given on day four. A drug that she has taken in the past. A drug that the moment it hit her IV today caused this to happen:
I feel terrible that my little girl went through that and even worse that my husband had to watch it happen. He said that one minute she was just sitting there coloring and then a split second later her face washed out, her arms and legs turned bright red and she was gagging for air. Within seconds the room was filled with a dozen people including three doctors. They gave her an epi pen, IV benadryl and made her sit under observation for the rest of the day.
We were lucky that her medical team was so quick to act, but I think it has shaken us a bit. I thought to myself throughout the afternoon that I had only briefly said goodbye to her when she left for a seemingly routine visit early this morning and all of the "What If's" began to flood my mind again. Brooklyn is sailing through her treatment, but from time to time we are reminded of the reality of what has happened to our child and how scary this disease truly is.
Friday, May 24, 2013
The Incredibly Anticlimactic Start of Delayed Intensification
Well, today did not go at all like I thought it would, and really, has it ever? I don't even know why I act surprised anymore, it's all very par for the course.
As we were driving into Children's today, I received a phone call from the clinic. Brooklyn had been scheduled for a lumbar puncture with chemo. It was news to me, no one had even mentioned such a thing at the last appointment. For those who don't know, a lumbar puncture with chemo requires at least 8 hours of fasting followed by anesthesia. I, of course, had just fed Brooklyn a gigantic plate of bacon and eggs thinking that it would be the last thing she'd ever willingly eat for the next two months. Apparently, our oncologist had ordered the LP two weeks ago. An order that disappeared into a black hole the moment it was written. Then yesterday they came across the misplaced order and put her on the schedule last minute. Except that no one ever called to let us know that this had transpired. Lots of finger pointing took place and finally the doctor threw up her hands and said fuck it, lets just try this again on Tuesday. So that is what is happening. Tuesday.
I did get to take a look at the next road map. Its a doozy, but still not nearly as craptastic as the first month was.
Six weeks. It looks like this-
-1 dose of Peg asparaginase and an LP with Chemo in Week 1
-Once weekly doses of Vincristine and Doxorubicin (I've been informed that this new drug is nicknamed "Red Devil", which, really is quite comforting)
-Steroids, 7 days on, 7 days off and 7 days on again. (I'm currently stocking up on Avocados and frozen pizzas)
-An antacid once daily to counteract the steroids
-An anti-fungle FOUR TIMES DAILY!
The doctor says we can expect her to be pretty sick and tired, and the rest of her hair could fall out (there isn't much), which, honestly, is the least of my worries at this point. Also, this Red Devil shit is supposed to turn her tears and urine red. Look out for Brooklyn's debut in the next big Korean Horror film.
This is the home stretch, we are so close to long term maintenance I can almost taste it. Hopefully, by July we will not only be celebrating our sweet girls third birthday, but also celebrating the close of this chapter in Brooklyn's fight.
As we were driving into Children's today, I received a phone call from the clinic. Brooklyn had been scheduled for a lumbar puncture with chemo. It was news to me, no one had even mentioned such a thing at the last appointment. For those who don't know, a lumbar puncture with chemo requires at least 8 hours of fasting followed by anesthesia. I, of course, had just fed Brooklyn a gigantic plate of bacon and eggs thinking that it would be the last thing she'd ever willingly eat for the next two months. Apparently, our oncologist had ordered the LP two weeks ago. An order that disappeared into a black hole the moment it was written. Then yesterday they came across the misplaced order and put her on the schedule last minute. Except that no one ever called to let us know that this had transpired. Lots of finger pointing took place and finally the doctor threw up her hands and said fuck it, lets just try this again on Tuesday. So that is what is happening. Tuesday.
I did get to take a look at the next road map. Its a doozy, but still not nearly as craptastic as the first month was.
Six weeks. It looks like this-
-1 dose of Peg asparaginase and an LP with Chemo in Week 1
-Once weekly doses of Vincristine and Doxorubicin (I've been informed that this new drug is nicknamed "Red Devil", which, really is quite comforting)
-Steroids, 7 days on, 7 days off and 7 days on again. (I'm currently stocking up on Avocados and frozen pizzas)
-An antacid once daily to counteract the steroids
-An anti-fungle FOUR TIMES DAILY!
The doctor says we can expect her to be pretty sick and tired, and the rest of her hair could fall out (there isn't much), which, honestly, is the least of my worries at this point. Also, this Red Devil shit is supposed to turn her tears and urine red. Look out for Brooklyn's debut in the next big Korean Horror film.
What is left of BK's scraggly head of hair.
This is the home stretch, we are so close to long term maintenance I can almost taste it. Hopefully, by July we will not only be celebrating our sweet girls third birthday, but also celebrating the close of this chapter in Brooklyn's fight.
Sunday, April 14, 2013
Half Assing it Through Phase III
Well, we are three weeks into Interim Maintenance and I wish I could say it's gone smoothly thus far, but then I would be lying.
Here's how things should have gone; Brooklyn would receive a dose of Methotrexate and a dose of Vincristine every ten days. The doctor would raise the dosage on each visit until Brooklyn began show side effects from the chemicals so that by the fifth dose she would be at the highest dose her body could tolerate.
What actually happened; Brooklyn received her first and very lowest dosage of Vincristine and Methotrexate and her immune system immediately collapsed.
What does that mean exactly? I can't really answer that questions because even her oncologist is perplexed. In the short term, it means we are officially delayed...er, half delayed, I guess, because they gave her the vincristine but not the methotrexate. They won't really be playing around with her dosage until her immune system is back up. It also means that we are in an isolation bubble again until I here otherwise. Bah!
It's ridiculously frustrating, tonight I spent the entire evening taking her temp every 10 minutes like a complete nutjob because I was certain she was on the verge of spiking a fever. It went from 99.9 to 100.3 to 100.4 then back down to 99.8. I checked before bed and it was all the way down to 98.9 so I guess she was just running warm? Anyway, being neutropenic is no bueno and it turns me into a neurotic mess. We are supposed to head back into clinic in 10 days and lord help me if her numbers aren't back up I might just have tantrum right then and there.
In the mean time, let me tell you about little miss Brooklyn. My daughter. I have never, ever seen Brooklyn behave as normal and happy as she has in the past three weeks. Not only has she been completely free from side effects (no vomiting, exhaustion, or temperament issues), but she's doing things that actual normal two years do. The kind of crap that would otherwise annoy the shit out of the parents of a healthy kid but absolutely thrills me.
Yesterday I caught her rooting through my purse and when I asked her what she was looking for, she stuffed her hand in her pockets, batted her lashes at me and said "chocolate."
When I ran into the living room the other day to a screaming baby and Brooklyn huddled in the corner "sweeping" with a broom I shouted "Brooklyn! Did you hit you sister in the head with that broom?!" She turned to me, grinned and shouted back "No! In the nose!!!"
She's walking, talking trouble. Feisty as hell. and I can' say I mind one little bit.
Here's how things should have gone; Brooklyn would receive a dose of Methotrexate and a dose of Vincristine every ten days. The doctor would raise the dosage on each visit until Brooklyn began show side effects from the chemicals so that by the fifth dose she would be at the highest dose her body could tolerate.
What actually happened; Brooklyn received her first and very lowest dosage of Vincristine and Methotrexate and her immune system immediately collapsed.
What does that mean exactly? I can't really answer that questions because even her oncologist is perplexed. In the short term, it means we are officially delayed...er, half delayed, I guess, because they gave her the vincristine but not the methotrexate. They won't really be playing around with her dosage until her immune system is back up. It also means that we are in an isolation bubble again until I here otherwise. Bah!
It's ridiculously frustrating, tonight I spent the entire evening taking her temp every 10 minutes like a complete nutjob because I was certain she was on the verge of spiking a fever. It went from 99.9 to 100.3 to 100.4 then back down to 99.8. I checked before bed and it was all the way down to 98.9 so I guess she was just running warm? Anyway, being neutropenic is no bueno and it turns me into a neurotic mess. We are supposed to head back into clinic in 10 days and lord help me if her numbers aren't back up I might just have tantrum right then and there.
In the mean time, let me tell you about little miss Brooklyn. My daughter. I have never, ever seen Brooklyn behave as normal and happy as she has in the past three weeks. Not only has she been completely free from side effects (no vomiting, exhaustion, or temperament issues), but she's doing things that actual normal two years do. The kind of crap that would otherwise annoy the shit out of the parents of a healthy kid but absolutely thrills me.
Yesterday I caught her rooting through my purse and when I asked her what she was looking for, she stuffed her hand in her pockets, batted her lashes at me and said "chocolate."
When I ran into the living room the other day to a screaming baby and Brooklyn huddled in the corner "sweeping" with a broom I shouted "Brooklyn! Did you hit you sister in the head with that broom?!" She turned to me, grinned and shouted back "No! In the nose!!!"
She's walking, talking trouble. Feisty as hell. and I can' say I mind one little bit.
Friday, March 29, 2013
The Start of Interim Maintenance
I've been fretting since the beginning of this week.
Here's why.
Look familiar? Yeah.
I was tempted to write a blog post about these new bruises I recently discovered on Brooklyn's shins last Sunday, but held back. In the past this blog has served as an excellent source of foreshadowing and I thought it best not to create a potential guessing game of whether or not we were looking at the R-word. It's better if you don't allow your mind to take you there.
Anyway, you'll be happy to know that Brooklyn's blood work came back perfect. She remains in remission. Of course I was a gigantic ball of nerves as we waited for her oncologist so when she finally walked through door I practically shouted "IS HER BLOOD WORK OKAY?!". She assured me it was, and that the bruises likely have less to do with the fact that she has cancer and more to do with the fact that she's been trying to keep up with her five year old half brothers hard playing ways.
So today begins phase three, also known as Interim Maintenance. It's supposed to be easy, but I suspect it will be hard on poor Brooklyn as one if the chemo meds she'll be receiving is the same one that caused her jaw, knee and back pain during phase one. I'm walking out of this clinic armed with painkillers just in case she responds the same way this time around.
This is interim maintenance-
Two shots every ten days for 6 weeks
Antibiotics on the weekends
You are reading correctly. No more chemo home care for the next 8 weeks! I could jump up and high five the air right now. So here we are, just plugging right along. As per usual, Brooklyn is kicking cancers ass like a champ in the iconic pink headphones, striped beanie and hello kitty tee-shirt that has become somewhat of a uniform these days.
Here's why.
Look familiar? Yeah.
I was tempted to write a blog post about these new bruises I recently discovered on Brooklyn's shins last Sunday, but held back. In the past this blog has served as an excellent source of foreshadowing and I thought it best not to create a potential guessing game of whether or not we were looking at the R-word. It's better if you don't allow your mind to take you there.
Anyway, you'll be happy to know that Brooklyn's blood work came back perfect. She remains in remission. Of course I was a gigantic ball of nerves as we waited for her oncologist so when she finally walked through door I practically shouted "IS HER BLOOD WORK OKAY?!". She assured me it was, and that the bruises likely have less to do with the fact that she has cancer and more to do with the fact that she's been trying to keep up with her five year old half brothers hard playing ways.
So today begins phase three, also known as Interim Maintenance. It's supposed to be easy, but I suspect it will be hard on poor Brooklyn as one if the chemo meds she'll be receiving is the same one that caused her jaw, knee and back pain during phase one. I'm walking out of this clinic armed with painkillers just in case she responds the same way this time around.
This is interim maintenance-
Two shots every ten days for 6 weeks
Antibiotics on the weekends
You are reading correctly. No more chemo home care for the next 8 weeks! I could jump up and high five the air right now. So here we are, just plugging right along. As per usual, Brooklyn is kicking cancers ass like a champ in the iconic pink headphones, striped beanie and hello kitty tee-shirt that has become somewhat of a uniform these days.
Thursday, March 28, 2013
We are Lucky
I had a moment, sometime shortly after the beginning of Brooklyn's treatment, when I was hauling ass between her oncology visits at Childrens, Indie's early term pediatric visits in the Valley and my OB postpartum appointments in Pasadena, where I thought-
"What if we didn't have this beautiful system of support made up of our friends and family? What if we didn't live in a community that offered us not one, but perhaps five different treatment facilities that offer pediatric oncology services? What if we were not a young couple working to make our baby healthy again, but instead a single person struggling to figure out how to both save their child and feed their family at the same time? What if we had shit insurance? What if we didn't have transportation, daycare, money for prescription copayment or hospital parking?'
There are thousands of "what ifs". They are all terrifying to think about, I promise, the most terrifying of which is-
"What if I were doing this alone?"
Enter The Andre Sobel River of Life Foundation (Andreriveroflife.org). This group has earned mad respect within the juvenile illness world, and why not? Look that their mission statement!
When no other resources are available, social workers at our affiliated children’s hospitals send us urgent requests on behalf of single parent families in financial crisis. We respond immediately and without additional paperwork, because their social workers have already verified their need. The variety of requests range from essentials, such as food, transportation, utilities, and medications not covered by insurance to funds to protect a family from eviction or foreclosure.
We respond in 24 hours “when compassion can’t wait.”
Our River enhances and sustains lives in many other ways. We will advocate for airline tickets for a grandparent coming to help, or buy a wig for a self-conscious teenager returning to school after chemotherapy, or pay for ballet lessons for a neglected sibling. Instead of restriction, we give as freely as our River will allow. Contributions keep our River flowing. Please click below to make a gift.
I can not tell you how dark the days leading up to, and following Brooklyn's diagnosis were for us. Doing it alone would be completely unfathomable. Organizations like this exist for the soul purpose of helping single parent families. There are very few government resources available for parents of sick children who are forced to give up their jobs as a result. I would know.
(Now it's time for me to give you the shake down) Give your money to this Andres River of Life! I swear I have no horse in this race. Donations made to these people will not cure childhood cancer, nor will it pay my bills. It may, however, spare someone the heartache of having to choose between their sick child or a job. It might prevent a single parent from going into full on panic mode when their kid spikes a fever in the middle of the night and they have to rush into the ER. This organization can not run without donations. This organization helps people in dire straights.
OH LOOK, I FOUND THE DONATION PAGE FOR YOU!
You can make a donation in our sweet Brooklyn's name or you can make one for yourself, either way you'll feel awesome, and someone will be eternally grateful for you. Do it!
Wednesday, March 13, 2013
About Last Week...
Well, we made it out of the hospital in one piece, but it was no easy feat. It took the entire weekend to fully recover from Brooklyn's 18 hour ER stay followed by a night spent in the Hem/Onc ward. They finally released us on Thursday night after it was determined that Brooklyn was pretty severely dehydrated. Her stomach had stopped functioning entirely so she refused to eat or drink anything. This in turn caused her heart rate to be as elevated as it was. We still don't know what caused the fever, be it viral or bacterial, the antibiotic kicked it somehow. It's really bizarre, the cultures and blood tests came back negative for every common illness. We will likely never know what caused her temp to spike like that, but I'm glad it happened because I would have never known her heart was working overtime if we hadn't had to rush to the hospital.
So. Several bags of saline and many doses of laxative later, Brooklyn's heart rate went down. She was on the mend and headed home. I really have to stay on top of her about pushing fluids which has become a full time job these days.
I wish the drama ended there. It didn't. The next morning we returned to Children's at 5:30 am for Brooklyn's weekly lumbar puncture. When the nurse went to access Brooklyn's PICC line, she found that she was unable to flush it with saline. Three more nurses tried unsuccessfully and finally the hospitals "Central Line Guru" was called in. She did all sorts of voodoo on the damn thing and finally determined that the line was clotted and needed to be removed. She then called up our oncologist, Dr. Baskin and announced in her thickGerman accent "This child needs a chest port!" I guess Dr. Baskin approved because the Guru hung up without saying another word. Without hesitating, she walked over to Brooklyn and pulled out her PICC line. You could see the blood clot extending through the entire length of the 12 inch tube that once led directly to her heart. It was clear that the nurse the night before had failed to flush the line with Heparin, the one thing that keeps the PICC from clotting, when she unhooked Brooklyn's saline lock.
This frustrates me for multiple reasons. Mainly because I have spent the better part of two months OBSESSIVELY taking care of that stupid PICC line to make sure something exactly like this didn't happen and all it took was one overextended nurse to undo my weeks of fastidiousness . Additionally, it means that Brooklyn will now have her new central line for the entirety of her treatment as opposed to the 4-6 month timeline we were given in the beginning of all of this (the port sits under the skin in the chest and requires surgery to remove). On the bright side, I will no longer have to do PICC home care because the port is maintenance free. Plus she can bath and swim now, which I know makes her happy (bath time had become quite miserable since the PICC could not get wet).
Anyway, we are back on track following a couple of speed bumps. I have no intention of ever returning to the ER again. I hope that Brooklyn's treatment continues on an incident free path after this last week.
So. Several bags of saline and many doses of laxative later, Brooklyn's heart rate went down. She was on the mend and headed home. I really have to stay on top of her about pushing fluids which has become a full time job these days.
I wish the drama ended there. It didn't. The next morning we returned to Children's at 5:30 am for Brooklyn's weekly lumbar puncture. When the nurse went to access Brooklyn's PICC line, she found that she was unable to flush it with saline. Three more nurses tried unsuccessfully and finally the hospitals "Central Line Guru" was called in. She did all sorts of voodoo on the damn thing and finally determined that the line was clotted and needed to be removed. She then called up our oncologist, Dr. Baskin and announced in her thickGerman accent "This child needs a chest port!" I guess Dr. Baskin approved because the Guru hung up without saying another word. Without hesitating, she walked over to Brooklyn and pulled out her PICC line. You could see the blood clot extending through the entire length of the 12 inch tube that once led directly to her heart. It was clear that the nurse the night before had failed to flush the line with Heparin, the one thing that keeps the PICC from clotting, when she unhooked Brooklyn's saline lock.
This frustrates me for multiple reasons. Mainly because I have spent the better part of two months OBSESSIVELY taking care of that stupid PICC line to make sure something exactly like this didn't happen and all it took was one overextended nurse to undo my weeks of fastidiousness . Additionally, it means that Brooklyn will now have her new central line for the entirety of her treatment as opposed to the 4-6 month timeline we were given in the beginning of all of this (the port sits under the skin in the chest and requires surgery to remove). On the bright side, I will no longer have to do PICC home care because the port is maintenance free. Plus she can bath and swim now, which I know makes her happy (bath time had become quite miserable since the PICC could not get wet).
Anyway, we are back on track following a couple of speed bumps. I have no intention of ever returning to the ER again. I hope that Brooklyn's treatment continues on an incident free path after this last week.
Wednesday, March 6, 2013
What's Going on with Brooklyn?
I really just need to learn to keep my mouth shut. Last week I sat in front of our oncologist and actually said "knock on wood, but we've just been sailing through treatment with very little incident." Foolish me. So it's only natural that we should land our asses smack dab in the middle of the ER at 9pm last night. I had mentioned before that Brooklyn's appetite was virtually non existent since she started consolidation. Well yesterday she began acting strangely. In the late morning she was sitting next to me on the couch and suddenly started shaking. When I went to pick her up she pushed away from me screaming "no mama!". I took her temp, it was normal. I gave her a bit of anti nausea medication hoping that she was just feeling a bit sick. She seemed to pull out of it.
After nap time she woke up screaming bloody murder. She told me her knee hurt, so I immediately took her temp. 99.5, which is her typical baseline, so totally normal. Then I gave her some Tylenol and called the doctor for the second time in two days. They told me she was probably constipated and to give her a laxative. I remained unconvinced, but followed their instructions anyway. I know this child better than anyone else, I know when something is wrong and I was 100% certain that this time there was something else going on here.
Fast forward to bed time. As I'm tucking the kid in for the night, just before I pour a second glass of wine for myself I think "I should probably take her temp just to be certain". And so I do. 101.2. The hospital guidelines say to call in anything over 101.3. I knew we were headed there. Five minutes later I take her temp again. 101.5. Fuuuuuuuuuuck. So I call the on call oncologist. I am told to come to the ER immediately. So I pack up the kids, cork that bottle of wine and speed the whole family to the emergency room in the middle of the night. The place is pack. I mean, like no standing room packed. So I immediately put a mask on my little chemo kid and begin frantically searching for a safe corner. Apparently, cancer is serious to these people because I never even had time to sit down in the waiting room before they called Brooklyn's name. We were ushered into a room where the nurses did her vitals and blood draw. The doctor saw us almost the moment we settled in and announced they were setting her up for admittance just in case.
At this point Avi arrived from work to take the baby back home for the night. We were told that everything looked good and they would probably give her an antibiotic and send us home. Again, foolish thinking. An hour later they were hooking her up to a heart monitor, sending us for chest X-rays and an EKG. She came in with a heart rate of 200 and it had settled to 180. They would love for it to be down to 120. What could be causing this issue? They have no idea. Everything came back normal. The labs, the X-rays, the EKG. Her heart is just racing for some reason.
The most infuriating part of all of this is the fact that the hospital is completely full and there is not a bed to be found. Brooklyn and I have spent the past 15 hours camping out in the ER. We may be here for hours more. At least she has a private room. But it's not the most comfortable situation in the world. I'm beginning to wonder if I'll ever sleep again, I'm so exhausted. We still don't know what's going on with Brooklyn, and I'm not leaving until we find out.
If I've learned anything from this incident, it's that I should always follow my gut when it comes to my kids.
Tuesday, March 5, 2013
The Many Faces of Brooklyn
I was looking at some photos of Brooklyn taken from over the past couple of months and I was actually kind of shocked. I guess seeing her everyday makes it difficult to see the changes that have taken place in her since her diagnosis. In retrospect I think she was very underweight in the beginning due to her undiagnosed condition and it had gone completely unnoticed by me. Now she is a solid 31 pounds which seems much more appropriate for her age and height (see last photo). It's quite amazing how fast those steroids take effect, though. Even after a couple of days on them she was already looking a little bigger.
Just a quick photographic timeline:
Brooklyn the day before she went into the hospital
Brooklyn two days after starting treatment
Just a quick photographic timeline:
Brooklyn the day before she went into the hospital
Brooklyn two days after starting treatment
Brooklyn three weeks into treatment
Brooklyn on the last day of Induction
Brooklyn two weeks after Induction
This is Consolidation
Phase two. Treatment for ALL is so complex and long term that doctors typically deliver the road map to parents in bits and pieces. We really only knew what our first five weeks would look like, but after that was anyone's guess. Honestly, I don't think I would have been able to retain much more information beyond the induction phase, it was so rigorous. So, Brooklyn and I went into Children's on Friday where she had a routine lumbar puncture (watching my child get sedated and have a needle placed in her spine is now routine. I may need my empathy dial reset.) and we received her next treatment protocol. This is the consolidation phase:
1 pill per day
Antibiotics on the weekend
Once weekly lumbar punctures
It actually sounds pretty simple considering the shit storm we just came out of. But of course, as with all things in life, if something sounds too good to be true it probably is. So naturally this daily pill is a colossal pain in the ass to deliver. First off it's a pill, a real effing pill the size of an aspirin. I thought it might be chewable, but it's not. So instead I have to crush that sucker up and place it in a syringe with a little something. I've tried a number of suspensions, from apple juice to honey. So far grenadine seems to be the big winner. Additionally you can't give it with citrus or dairy for some unearthly reason. Lastly and most dauntingly, it must be given on an empty stomach. Which means at some point in the evening I need to cut her off from snacks.
Actually, that last bit might be okay. Because you see, Brooklyn has stopped eating almost entirely. The two weeks following her induction were fairly normal by two year old standards, but immediately following her first dose of 6MP, her eating came to a halt. I freaked out and began obsessively taking her temperature, praying it wasn't an infection. She seemed really happy, just reluctant to eat anything. I finally called her doctor and the charge nurse informed me that its pretty common for kids to go on hunger strikes following induction and to just try giving her a high calorie shake. Well, okay then.
So our next four weeks will hopefully stay relatively uneventful. It sounds like we don't even need to see the oncologist until the next phase, which makes me a little uneasy. I find comfort in the weekly reassurance I get from our doctor that things are going smoothly. Anyway, the next phase is interim maintenance aka the calm before the storm. We'll see what that brings.
1 pill per day
Antibiotics on the weekend
Once weekly lumbar punctures
It actually sounds pretty simple considering the shit storm we just came out of. But of course, as with all things in life, if something sounds too good to be true it probably is. So naturally this daily pill is a colossal pain in the ass to deliver. First off it's a pill, a real effing pill the size of an aspirin. I thought it might be chewable, but it's not. So instead I have to crush that sucker up and place it in a syringe with a little something. I've tried a number of suspensions, from apple juice to honey. So far grenadine seems to be the big winner. Additionally you can't give it with citrus or dairy for some unearthly reason. Lastly and most dauntingly, it must be given on an empty stomach. Which means at some point in the evening I need to cut her off from snacks.
Actually, that last bit might be okay. Because you see, Brooklyn has stopped eating almost entirely. The two weeks following her induction were fairly normal by two year old standards, but immediately following her first dose of 6MP, her eating came to a halt. I freaked out and began obsessively taking her temperature, praying it wasn't an infection. She seemed really happy, just reluctant to eat anything. I finally called her doctor and the charge nurse informed me that its pretty common for kids to go on hunger strikes following induction and to just try giving her a high calorie shake. Well, okay then.
So our next four weeks will hopefully stay relatively uneventful. It sounds like we don't even need to see the oncologist until the next phase, which makes me a little uneasy. I find comfort in the weekly reassurance I get from our doctor that things are going smoothly. Anyway, the next phase is interim maintenance aka the calm before the storm. We'll see what that brings.
Wednesday, February 27, 2013
Having a Moment
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.
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.
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.
Friday, January 25, 2013
The Girl who Ate Everything
I knew from my research to expect Brooklyn to be hungry from the steroid dexamethasone she was taking as part of her chemo treatment. I knew that it would be a ravenous uncontrolable hunger. I had no idea that it would completely take over my life. These days much time is spent in the kitchen making pizza, serving pizza or cleaning up after pizza. She wakes up begging for pizza and goes to bed in the very same state. When I finally put the pizza in front of her she looks almost relieved. Scarfing down each and every bite and then typically asking for more.
I realize that this may not be the healthiest diet, however the days leading up to the diagnosis, her appetite had been reduced to almost nothing. I'm conceding to the pizza because I'm just happy to see her eat right now. Perhaps in a week or two I'll attempt to steer her in a more healthy direction. But for now, my precious baby, who hasn't gained an ounce in six months is eating, and is loving eating, and damn it I'll take whatever I can get at this point.
I realize that this may not be the healthiest diet, however the days leading up to the diagnosis, her appetite had been reduced to almost nothing. I'm conceding to the pizza because I'm just happy to see her eat right now. Perhaps in a week or two I'll attempt to steer her in a more healthy direction. But for now, my precious baby, who hasn't gained an ounce in six months is eating, and is loving eating, and damn it I'll take whatever I can get at this point.
Weren't we just here?
The answer is yes! We were just here. Just ten days before our sweet Brooklyn was diagnosed with leukemia we were bringing our second baby girl home from the hospital after a rather lengthy stay in the NICU. She was born 7 weeks premature. Prior to her arrival I spent a week in the high risk maternity unit after being diagnosed with a dangerous liver disease. Needless to say after all of that I was feeling pretty confident that we had filled our dramatic family event quota for the year. I was sorely mistaken.
To most people, it would seem a bit unfair that a single family should encounter so much trauma in such a short amount of time, and they would be correct. It sucks big time. I'd much rather be sitting at the park, still big and pregnant, watching my pixie headed two year old tromps around the playground getting dirty. Instead I'm holed up in my house under quarantine during one of the worst flu seasons to date with a 5 pound one month old and an immunosuppressed toddler.
It would be easy to sit in my confined state and dwell on the way things should be, and I'd honestly be lying if I said I hadn't sobbed over a glass of wine at least a few times in the week since Brooklyn's diagnosis, but I'm reasonable enough to know that this is not at all productive. Wallowing is not going to help my preemie catchup developmentally and it sure as hell isn't going to save Brooklyn's life. If the news is bad enough, then cry, get it all out. But after that, pick yourself up and figure out what needs to be done next.
The silver lining here is that I'm not entirely sure that I would have been able to care for Brooklyn during this time if I were just a week away from having Indie. Instead I am lucky enough to have both of my girls, safe and sound under one roof and in my arms. Always look for the silver lining. Always.
To most people, it would seem a bit unfair that a single family should encounter so much trauma in such a short amount of time, and they would be correct. It sucks big time. I'd much rather be sitting at the park, still big and pregnant, watching my pixie headed two year old tromps around the playground getting dirty. Instead I'm holed up in my house under quarantine during one of the worst flu seasons to date with a 5 pound one month old and an immunosuppressed toddler.
The silver lining here is that I'm not entirely sure that I would have been able to care for Brooklyn during this time if I were just a week away from having Indie. Instead I am lucky enough to have both of my girls, safe and sound under one roof and in my arms. Always look for the silver lining. Always.
Wednesday, January 23, 2013
Take Everything but Leave the Kid
"Brooklyn's test results are consistent with Leukemia." This is how the news was delivered to us... and I want to document this, get it down in writing, because I fear that this is something that I might one day forget. Words that were delivered with such ease that the actual event of receiving said news was almost anticlimactic. In the beginning of all of this I had briefly wondered how on earth you drop such a substantial bomb on a parent and now I know. I wish I didn't, but I do.
So now my kid has cancer. She's two, and she has cancer. I'm not entirely sure what kind of force out there is running the show but it has got one fucked up sense of social justice. For the most part, it still doesn't feel real. It's as if every day I wake up and need to remind myself that my daughter is sick. The most difficult part to grapple with is the fact that as a parent you wish that the universe would make this battle yours and not your kids. Never in my life could I imagine my daughter fighting for hers.
So here we are, closing out week 1 of an apparently intense and grueling five week treatment program known as "Induction" or "Phase 1". I have yet to see any really bad side effects from the chemo in Brooklyn except for the fact that her temperament is just a bit more "colorful" than normal and she sleeps a little more.
My daughter hasn't ever been anything other than brilliantly fearless and I have no doubts that she will beat this thing, but I'm still terrified.
So now my kid has cancer. She's two, and she has cancer. I'm not entirely sure what kind of force out there is running the show but it has got one fucked up sense of social justice. For the most part, it still doesn't feel real. It's as if every day I wake up and need to remind myself that my daughter is sick. The most difficult part to grapple with is the fact that as a parent you wish that the universe would make this battle yours and not your kids. Never in my life could I imagine my daughter fighting for hers.
So here we are, closing out week 1 of an apparently intense and grueling five week treatment program known as "Induction" or "Phase 1". I have yet to see any really bad side effects from the chemo in Brooklyn except for the fact that her temperament is just a bit more "colorful" than normal and she sleeps a little more.
My daughter hasn't ever been anything other than brilliantly fearless and I have no doubts that she will beat this thing, but I'm still terrified.
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