On Friday Emma had such a big day that I have to make two separate posts. First I want to explain just a bit about oncology studies, and then I will explain what maintenance will look like for Emma.
STUDY
We have agreed to participate in every study that has been offered.
In one study, they are simply tracking each cancer patient and gathering information about race, gender, age, location, and stuff like that. This gives them statistical information, so that we can know how many kids get cancer, what ages are most common for which cancers, Caucasian kids are at slightly less risk of getting leukemia than Asian kids. Stuff like that.
One study is mapping Emma's genes, my genes, and Clinton's genes. Nobody knows why kids get Leukemia, and they are trying to identify genetic markers, or mutations. Can our genes tell them anything? I think they will look at Emma's genes compared with her parents, and also look for similarities among other kids on the same study. I don't know, but I hope that they find something that helps kids in the future.
Another study regards treatment. So many kids get ALL that they can get a good sample size when tweaking treatments. Childrens Oncology Group (COG) hospitals follow a certain protocol, and that is just ever so slightly different from St. Judes. Both of those vary a bit from European oncology protocols. They all use the same medicines; but at certain points the dosage or the frequency may vary. Emma's treatment study deals with the maintenance phase. They take the study from things other children's hospitals are doing.
They are doubling the dosage of methotrexate for certain kids on study to see whether the incident of relapse is affected at all.
For another set of kids in the study, they are giving one of the medications quarterly instead of monthly. If they see no measurable difference in outcomes, they may begin giving that med quarterly instead of monthly.
For another set of kids, they are BOTH doubling the methotrexate AND giving the one medication quarterly instead of monthly. Again, any difference in relapse rates or other affects may alter future treatments.
A fourth set of kids are the control group, and they get the same maintenance that is current COG standard procedure.
Emma was randomized into the control group. So all those things that they might do... not doing with Emma. She gets the standard practice.
MAINTENANCE
Maintenance is the last phase of treatment for ALL. There has been no detectable cancer for a few months and the different rounds of treatments have killed off the hidden pockets of lurking cells. Maintenance is the time when we maintain that cancer-free status. Over the next 18 months, her therapy is designed to keep her blood counts within a certain range. She will have suppressed immunity; but not complete lack of immunity.
The target ANC is between 750 and 1500. If she drops below 500, then we take a break until she is back up into the target range. If she gets above 1500, then we increase doses to get her back down into the target range.
She will take MP-6, also named mercaptopurine, every day until November 2016. It depresses counts and it also limits certain enzymes that cancer cells need in large supply. By limiting the enzyme, it denies any latent cancer cell the opportunity to multiply. Over 18 months, this should get rid of any lurkers.
Every week she will get methotrexate, on Fridays. When she has an LP, she will get methotrexate intrathecally. When she doesn't have an LP, she gets it in a pill.
The first five days of each 28-day cycle, she will take Dexamethasone morning and night. This is the steroid she has had before. She has been taking it since Friday. She is moody and irritable and hungry and picky. We will do this every 28 days for the next 18 months. I am imagining a 5-year old with PMS, and that thought is just a teensy funny and helps a little. The funny will likely wear off pretty quickly.
She will also get Vincristine by I.V. each month when we go to clinic.
There will be monthly blood draws to check counts. The doses will be adjusted as needed.
The same rules apply as before with fevers and illness. She will begin Kindergarten in August. We will get a letter from the doctor that should exempt her from the immunization requirements. She won't get those until six months after she ends treatment.
And there you have it, the final phase and what life looks like for the next while.
Showing posts with label ALL. Show all posts
Showing posts with label ALL. Show all posts
Monday, June 2, 2014
Tuesday, December 17, 2013
All quiet
Interim maintenance is a bit quiet because appointments are only scheduled every 10 days. It has been one week since Emma's last treatment. Not much to report.
On Friday she complained a bit of kidney pain, so we took her to the lab to check for a UTI. While we were there, I wanted a blood count since it had been, like, three days.
Seriously, I really want to know whether she is picking up again or if she is still neutropenic (low ANC, low immunity.) The lab has a standing order to give Emma a CBC any time I walk in and ask, because it's easier than ordering a blood test every week or two.
No UTI. Not much ANC; it's at 100. It was 300 on Tuesday and 100 the previous Friday.
I am going to relate some of the history here, and somebody else will probably tell you a more accurate story; but this is how I understand it.
Leukemia used to be a death sentence, usually with 6-8 weeks left to say goodbye.
In the late 50s and early 60s, a couple doctors were ridiculed, mocked, harassed, and heckled for interfering with leukemic kids' last days. Those doctors developed an induction phase - treatment that would put kids into remission within about a month.
By the 1970s, most kids went into remission, but about 90% would eventually relapse; but they finally had a chance, and even with relapse, they pushed back the cancer.
In the 1980s, they had radiation treatment and some of the other courses. At some point they figured out how to deliver chemo to the cerebral spinal fluid without radiating kids' brains, and that's what the intrathecal methotrexate is all about. We like this development a lot.
Now, kids like Emma get into remission in the first month, or pretty close thereafter. They spend the next 3 to 3 1/2 years reducing the incidence of relapse.
93% of pediatric ALL cases survive. Some relapse and fight through bone marrow transplants. Some get extremely sick through the process. There is often a strong reaction to one or another medication. Some get horrid infections and secondary complications. Some have to learn to eat again, to walk again. Some lose hearing. Some make it through with minor complications.
Our perspective has shifted to include an understanding of what could befall a kid with leukemia.
Emma has been fairly isolated for a week and a half since her ANC went below 500, and she will continue to stay out of groups. Even during the Christmas Holiday, her counts determine whether she can go out. People have asked how we are doing. Truly, I can't complain. She is doing incredibly well, all things considered.
On Friday she complained a bit of kidney pain, so we took her to the lab to check for a UTI. While we were there, I wanted a blood count since it had been, like, three days.
Seriously, I really want to know whether she is picking up again or if she is still neutropenic (low ANC, low immunity.) The lab has a standing order to give Emma a CBC any time I walk in and ask, because it's easier than ordering a blood test every week or two.
No UTI. Not much ANC; it's at 100. It was 300 on Tuesday and 100 the previous Friday.
I am going to relate some of the history here, and somebody else will probably tell you a more accurate story; but this is how I understand it.
Leukemia used to be a death sentence, usually with 6-8 weeks left to say goodbye.
In the late 50s and early 60s, a couple doctors were ridiculed, mocked, harassed, and heckled for interfering with leukemic kids' last days. Those doctors developed an induction phase - treatment that would put kids into remission within about a month.
By the 1970s, most kids went into remission, but about 90% would eventually relapse; but they finally had a chance, and even with relapse, they pushed back the cancer.
In the 1980s, they had radiation treatment and some of the other courses. At some point they figured out how to deliver chemo to the cerebral spinal fluid without radiating kids' brains, and that's what the intrathecal methotrexate is all about. We like this development a lot.
Now, kids like Emma get into remission in the first month, or pretty close thereafter. They spend the next 3 to 3 1/2 years reducing the incidence of relapse.
93% of pediatric ALL cases survive. Some relapse and fight through bone marrow transplants. Some get extremely sick through the process. There is often a strong reaction to one or another medication. Some get horrid infections and secondary complications. Some have to learn to eat again, to walk again. Some lose hearing. Some make it through with minor complications.
Our perspective has shifted to include an understanding of what could befall a kid with leukemia.
Emma has been fairly isolated for a week and a half since her ANC went below 500, and she will continue to stay out of groups. Even during the Christmas Holiday, her counts determine whether she can go out. People have asked how we are doing. Truly, I can't complain. She is doing incredibly well, all things considered.
Friday, November 1, 2013
What it Means
I will admit that I didn't dance the proper jig upon getting the news
that Emma is cancer free. It seems that a person who doesn't have cancer
should not have 2 1/2 years of cancer treatment in her future.
What I know about cancer is pretty limited. What I know about childhood leukemia as really not very much. I'm learning, though, and will continue to learn. Today we found out what's next in a little more detail.
Emma is in a normal risk category. Her symptoms at diagnosis were common. Her reactions have been similar to textbook. She has so far presented a typical case.
They expect to effectively eliminate the cancer in the first 28 days. They did that. There have been enough kids with ALL over the past 60 years to do a lot of research and define the drugs and protocols that work best. They are still tweaking and fine-tuning; but they have a pretty good idea that "no cancer" isn't the final word. They must destroy every single last cancer cell, or it will come back with gusto.
The next phase is consolidation. 28 days of oral chemotherapy as well as weekly clinic visits for intrathecal chemotherapy (chemo given through a lumbar puncture into her spinal fluid.)
After that is 8 weeks of interim maintenance, then 4 weeks of delayed intensification, and then 8 more weeks of interim maintenance. Count that up and you'll get roughly 6 months.
If all goes well, then early summer will find Emma in maintenance, which runs for 2 years... according to the textbooks, anyway.
I have information that truly makes me feel hopeful; but Emma has a long way yet to go. I'm so glad that she is feeling better. Each day is a bit better. She still tires pretty easily. She still limps. She is happier, though, and clearly feels so much better than she has.
What I know about cancer is pretty limited. What I know about childhood leukemia as really not very much. I'm learning, though, and will continue to learn. Today we found out what's next in a little more detail.
Emma is in a normal risk category. Her symptoms at diagnosis were common. Her reactions have been similar to textbook. She has so far presented a typical case.
They expect to effectively eliminate the cancer in the first 28 days. They did that. There have been enough kids with ALL over the past 60 years to do a lot of research and define the drugs and protocols that work best. They are still tweaking and fine-tuning; but they have a pretty good idea that "no cancer" isn't the final word. They must destroy every single last cancer cell, or it will come back with gusto.
The next phase is consolidation. 28 days of oral chemotherapy as well as weekly clinic visits for intrathecal chemotherapy (chemo given through a lumbar puncture into her spinal fluid.)
After that is 8 weeks of interim maintenance, then 4 weeks of delayed intensification, and then 8 more weeks of interim maintenance. Count that up and you'll get roughly 6 months.
If all goes well, then early summer will find Emma in maintenance, which runs for 2 years... according to the textbooks, anyway.
I have information that truly makes me feel hopeful; but Emma has a long way yet to go. I'm so glad that she is feeling better. Each day is a bit better. She still tires pretty easily. She still limps. She is happier, though, and clearly feels so much better than she has.
Wednesday, October 30, 2013
Results
The results of last week's Bone Marrow Aspirate are in: No detectable cancer. That means the first round was effective.
We start round 2 on Friday at which point we will discuss what this means.
With ALL, the threat of recurrence is sufficient that we have 2 more years of treatments.
We are happy about the lab results.
I allow myself a little sigh of satisfaction; but I have learned enough in the last month to know that it isn't a sigh of relief just yet.
We are hopeful.
We start round 2 on Friday at which point we will discuss what this means.
With ALL, the threat of recurrence is sufficient that we have 2 more years of treatments.
We are happy about the lab results.
I allow myself a little sigh of satisfaction; but I have learned enough in the last month to know that it isn't a sigh of relief just yet.
We are hopeful.
Tuesday, October 29, 2013
Tiny Superheroes
Here is a story of another friend that we have never met. Emma's Grandpa
Tec has been married to Linda for a bit more than 10 years. While Linda
is an important part of our family, we haven't had interactions with
any of her extended relations. Liz is Linda's cousin. She and her
husband, Art, live in California and they sponsored Emma's Tiny
Superheroes cape and super powers.
Tiny Superheroes make custom super capes for children with life-threatening diseases and disabilities. A bunch of kids have been nominated as super heroes and are waiting for sponsors, and many kids' parents and friends sponsor them right off, like Emma. Thanks Liz and Art.
While I know that the mom who started Tiny Superheroes is running a business and has to make a profit, I'm glad she focuses on kids who have to fight death long before they should worry about more than what's for lunch or when will we get there?
I'm grateful for people like Liz and Art who reach out to love a child they have never met. The people that donate puzzles and play dough to children's hospitals. The people that donate blood or platelets, never knowing who will need it. The people who knit hats and donate them to cancer clinics. The blanket makers. The folks who pray for my Emma by name. Friends who send us packages, cards, emails, texts, and other messages to say they are thinking of us.
There are people who have fought death, who have stood by while their child has fought to live. They have a particular empathy. There are those who can only imagine, but who reach out in love to share the burden. I am grateful for those.
I am grateful that, among the cancers, we have a less-awful monster. I am grateful that, so far, Emma is responding to the treatments. I am hopeful that she will continue to respond well. It is a less-awful variety of cancer and we try to stay positive. It is not "just ALL." Don't ever say "just stage 1." Cancer is a lethal merciless killer in all its forms.
The survivors don't have it easy, no matter what the survival rate or how spread out the treatments, or how mild the chemo. Chemotherapy is concentrated poison, and the drugs to control the side effects have their own side effects that can be pretty rotten.
Those who fight cancer, child or adult, patient or practitioner, are heroes. Thanks for cheering for our tiny superhero.
Tiny Superheroes make custom super capes for children with life-threatening diseases and disabilities. A bunch of kids have been nominated as super heroes and are waiting for sponsors, and many kids' parents and friends sponsor them right off, like Emma. Thanks Liz and Art.
While I know that the mom who started Tiny Superheroes is running a business and has to make a profit, I'm glad she focuses on kids who have to fight death long before they should worry about more than what's for lunch or when will we get there?
I'm grateful for people like Liz and Art who reach out to love a child they have never met. The people that donate puzzles and play dough to children's hospitals. The people that donate blood or platelets, never knowing who will need it. The people who knit hats and donate them to cancer clinics. The blanket makers. The folks who pray for my Emma by name. Friends who send us packages, cards, emails, texts, and other messages to say they are thinking of us.
There are people who have fought death, who have stood by while their child has fought to live. They have a particular empathy. There are those who can only imagine, but who reach out in love to share the burden. I am grateful for those.
I am grateful that, among the cancers, we have a less-awful monster. I am grateful that, so far, Emma is responding to the treatments. I am hopeful that she will continue to respond well. It is a less-awful variety of cancer and we try to stay positive. It is not "just ALL." Don't ever say "just stage 1." Cancer is a lethal merciless killer in all its forms.
The survivors don't have it easy, no matter what the survival rate or how spread out the treatments, or how mild the chemo. Chemotherapy is concentrated poison, and the drugs to control the side effects have their own side effects that can be pretty rotten.
Those who fight cancer, child or adult, patient or practitioner, are heroes. Thanks for cheering for our tiny superhero.
Thursday, October 17, 2013
Gold vs. Pink, After a Link
First, update: Yesterday clinic was great. Much like last week, except
that I remembered the numbing cream. Emma giggled through port access,
which means that Becky is a great nurse and Emma is a brave girl to
giggle in the face of needles.
That's a little creepy; but such is our new life.
Her ANC is a measure of just how much she is at risk of infections or illness. It was higher than it has been since diagnosis, which is really good. She ate Macaroni and Cheese while waiting for her chemo.
Today, the day after, she is totally tired. That is a pattern: tired after chemo and bigger swings in the big moody mood swing.
In other news, Emma is walking more and seems to be in less pain. This is incredibly good and positive nd joyful.
Second, I have a couple links that are encouraging to me today.
This article helps me hope that Emma will mostly forget the awfulness of cancer.
And this article, written by one of our nurses.
Third, September was childhood cancer awareness month. Gold, by the way. October is pink for breast cancer. I have joined a Facebook group of Cancer Mommas. There are some Mommas who are sad to see all the pink because the world didn't go Gold for our kiddos last month.
You see it: pink yogurt lids, ribbons on all kinds of products from oatmeal to clothing. Pink ribbons on airplanes, billboards, and NFL jerseys. Susan G. Komen is a busy, busy lady.
I am very close to a breast cancer survivor, and very close to a breast cancer victim that didn't survive. I can't be mad about the pink. I honor my dear, dear friends and I hope for better treatments and a cure for breast cancer.
I hear that Orange is for Leukemia. I haven't seen that official. I don't think Emma is any less loved if you put on some pink today. Love grows as you give it away, so love the pink, and share a little extra love with your coworkers, friends, family, or roommates today in honor of Emma.
That's a little creepy; but such is our new life.
Her ANC is a measure of just how much she is at risk of infections or illness. It was higher than it has been since diagnosis, which is really good. She ate Macaroni and Cheese while waiting for her chemo.
Today, the day after, she is totally tired. That is a pattern: tired after chemo and bigger swings in the big moody mood swing.
In other news, Emma is walking more and seems to be in less pain. This is incredibly good and positive nd joyful.
Second, I have a couple links that are encouraging to me today.
This article helps me hope that Emma will mostly forget the awfulness of cancer.
And this article, written by one of our nurses.
Third, September was childhood cancer awareness month. Gold, by the way. October is pink for breast cancer. I have joined a Facebook group of Cancer Mommas. There are some Mommas who are sad to see all the pink because the world didn't go Gold for our kiddos last month.
You see it: pink yogurt lids, ribbons on all kinds of products from oatmeal to clothing. Pink ribbons on airplanes, billboards, and NFL jerseys. Susan G. Komen is a busy, busy lady.
I am very close to a breast cancer survivor, and very close to a breast cancer victim that didn't survive. I can't be mad about the pink. I honor my dear, dear friends and I hope for better treatments and a cure for breast cancer.
I hear that Orange is for Leukemia. I haven't seen that official. I don't think Emma is any less loved if you put on some pink today. Love grows as you give it away, so love the pink, and share a little extra love with your coworkers, friends, family, or roommates today in honor of Emma.
Tuesday, September 24, 2013
The Punchline
So it's been hectic here since around 5:00... some 6 and a half hours ago. I want to update you on everything that has happened today, but I'm going to skip right to the for-real diagnosis:
Emma has Pre B Cell acute lymphoplastic leukemia.
Commonly called ALL or Pre B ALL
Three-letter Acronyms, or TLAs are going to become part of our life,
I plan to put any updates, any information we get that seems worth sharing right here.
Then we'll direct all of our super amazing team of loving support here for updates. It turns out that we have a really awesome powerful support network, and we couln't be happier about that.
Drop us a line in the comments. We'll read them.
Thanks for joining in our journey.
-Momma
Monday, September 23, 2013
Leukemia
Got the diagnosis that we're going to stick with yesterday around 6:00.
Emma has Pre B cell Acute Lymphoblastic Leukemia, or ALL.
The most common cancer for kids is Leukemia, and the most common Leukemia for kids her age is this ALL business.
They refuse to tell us stats because Emma isn't a statistic and her journey is going to be Emma's story, not a statistic; but this variety of cancer has great cure rates.
Obviously they don't like telling people they have cancer; but this is their favorite to diagnose, if you can say it that way without being ghoulish.
It took a few hours for things to settle down, but since we're in for a long haul, and since we have a HUGE support network, we decided to take the social worker's advice and put up a single place for Emma updates.
Thank you so much for caring about our little Emma to come here.
I've added to this journal the large-group-blast-emails we sent to our family over the last couple days to bring you up to speed on how we got here.
I doubt I will put so much information so quickly again.
Thank you all so much for loving us enough to necessitate this kind of communication tool. We're overwhelmed by the love we've experienced, and that's before we actually really told anybody outside our family. Thank you.
With sincerity, Merinda
The most common cancer for kids is Leukemia, and the most common Leukemia for kids her age is this ALL business.
They refuse to tell us stats because Emma isn't a statistic and her journey is going to be Emma's story, not a statistic; but this variety of cancer has great cure rates.
Obviously they don't like telling people they have cancer; but this is their favorite to diagnose, if you can say it that way without being ghoulish.
It took a few hours for things to settle down, but since we're in for a long haul, and since we have a HUGE support network, we decided to take the social worker's advice and put up a single place for Emma updates.
Thank you so much for caring about our little Emma to come here.
I've added to this journal the large-group-blast-emails we sent to our family over the last couple days to bring you up to speed on how we got here.
I doubt I will put so much information so quickly again.
Thank you all so much for loving us enough to necessitate this kind of communication tool. We're overwhelmed by the love we've experienced, and that's before we actually really told anybody outside our family. Thank you.
With sincerity, Merinda
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