I believe in Santa Claus. He doesn't always dress in fur, he frequently doesn't own a pipe, he often doesn't grow a beard of any color including white, and he is not always a man.
I know he works through elves sometimes, because I have been, on occasion, an elf. I have also been Santa Claus, and I'm trying to teach my kids to be Santa Claus although they don't know that's what the lesson is, yet.
I can't begin to say how grateful we are for Santa Claus. We
gratefully have insurance; but our high deductible is pretty high and
our HSA has experienced heart surgery and cataract surgery in the past
couple years, so the reserve is gone. Clinton has a job and we're
meeting all our bills. We're doing better than a lot of cancer families; but
we planned a very modest Christmas. Santa Claus had other ideas.
Santa Claus sent us an unsigned letter from a 3-digit, truncated Salt Lake ZIP code containing a cashiers check.
Santa Claus gave us two trash bags full of toys.
Santa Claus works with Clinton and gave him an Amazon gift balance to help with Christmas.
Santa Claus, knowing what Lizzy wants, and knowing we couldn't get it this year, bought her one true desire along with some accessories.
Santa Claus sent an elf to leave an envelope on our front porch with cash in it. Clinton saw the back of a child-elf disappearing around the corner. Not enough to identify; and we won't try. I know what it is to want my gift to remain a secret.
Santa Claus is an engineering teacher that assigns the following for a grade: fill stockings for cancer patients at Primary Children's Hospital.
Santa Claus decorates Christmas trees and delivers them to families in need of cheer.
Santa Claus picks up ornaments from the Giving Tree and Sub for Santa.
Santa Claus encourages magic and wonder in children and adults.
Christmas works because so many people are in on it. Our culture makes the miracle happen. We don't talk about it in front of kids. Hollywood helps preserve it in carefully edited and craftily written ways. Adults everywhere, and teenagers too, promote the magic. Even those who have no interest in perpetuating and creating magic generally keep their mouths shut about Santa in the presence of little kids.
I have a friend whose 4-year old stumbled upon a stash and, when exposed, like the Grinch, my friend thought up a lie, and she thought it up quick. Of course, she wasn't stealing Christmas; she was protecting Santa. That certainly isn't his first suspicious alibi.
Why do we do it? What or who is in charge of it?
Santa Claus.
Monday, December 23, 2013
Saturday, December 21, 2013
Goals Update
First off, Clinic on Friday was pretty good. We love Doug. We love Dr. Engle. We are so happy that those two are Emma's primary doctors and we are glad when clinic days are Friday. Also, Daddy got to come to clinic, which is a real treat.
Dr. Engle explained about the Methotrexate IV. He said that some kids' counts crash with the first IV methotrexate and the body figures out how to process it. Some tolerate all the following doses through the rest of treatment; just the first dose shocks the system. The goal with the increasing dose over two months is to get to the highest point that the patient can tolerate - to make them sick.
That's chemo's job: to make you sick. It is killing the cells that spread cancer. Once the body figures out how to metabolize the chemo, they escalate.
Emma is enrolled in a lot of cancer studies. One through Huntsman Cancer Institute is mapping the gene sequence of Emma and Clinton and me. Then they can compare Emma's DNA with her parents' DNA and see what there is to learn about it. Are there genetic factors? Did her DNA mutate? Can they find a cause for leukemia somewhere in the genetic code? Julie from Huntsman came to draw blood from Clinton and me, since that hadn't yet been done.
I cringe at blood draws. Julie had to poke Clinton twice, and he laughed during his blood draw. There's a genetic tie: we now can guess why Emma laughs in the face of needles.
Our buddy Maddie was in the infusion room getting some blood, so we got to chat with her and her mom. While I was talking, our nurse Kristin employed her mad ninja skills to get all Emma's chemo in and her port de-accessed without me noticing.
Another buddy, Braelyn, was inpatient with fever and low ANC, so we dropped in to visit them, too.
Cancer isn't necessarily a social thing; but we're making friends.
Back in September when Emma was diagnosed, we made some goals.
About a week after we brought Emma home from the hospital, we stuck a white board up in the kitchen. I'm not a schedule keeper. I don't take my vitamins on time. If it weren't for school being so consistent (imagine: they start at the same time every single day. Weird.) we would not do anything according to a schedule. Chemo has to be administered on a schedule.
Along the top of the white board I distilled our four goals for Emma's cancer journey. I can't control how Emma handles treatment. I can't personally prevent fevers, complications, relapse, or any of the frightening possibilities. There is a lot outside our control.
We do get a say in whether our family pulls apart or whether we grow together. Clinton and I get to decide whether we will join a horrifying statistic - 80% of parents of cancer kids get divorced. That's a mind-blowingly unbelievable statistic.
Also, a lot of people going through serious major stresses frequently distance themselves from God. To paraphrase Jeffrey R. Holland, when storms rage and the sea is choppy, don't get out of the boat.
Cancer takes a lot of casualties beyond physical lives. It doesn't just kill, it leaves a mess in its wake. The fabulous doctors and nurses are responsible to fight cancer in Emma; and Emma's team fights the collateral damage that it causes.
Clinton and I are going out a couple times a month, and we're talking a lot about our feelings, our relationship, and keeping tabs on each other. We are making scheduled one-on-one time with Lizzy and Tommy. Caleb, being 10 months, gets an appropriate level of baby snuggling. We're trying to double down on faith-building priorities, especially since Clinton and I have to take turns frequently staying home with Emma when counts are low.
We're still focused on these goals we set in the hospital in September.
Dr. Engle explained about the Methotrexate IV. He said that some kids' counts crash with the first IV methotrexate and the body figures out how to process it. Some tolerate all the following doses through the rest of treatment; just the first dose shocks the system. The goal with the increasing dose over two months is to get to the highest point that the patient can tolerate - to make them sick.
That's chemo's job: to make you sick. It is killing the cells that spread cancer. Once the body figures out how to metabolize the chemo, they escalate.
Emma is enrolled in a lot of cancer studies. One through Huntsman Cancer Institute is mapping the gene sequence of Emma and Clinton and me. Then they can compare Emma's DNA with her parents' DNA and see what there is to learn about it. Are there genetic factors? Did her DNA mutate? Can they find a cause for leukemia somewhere in the genetic code? Julie from Huntsman came to draw blood from Clinton and me, since that hadn't yet been done.
I cringe at blood draws. Julie had to poke Clinton twice, and he laughed during his blood draw. There's a genetic tie: we now can guess why Emma laughs in the face of needles.
Our buddy Maddie was in the infusion room getting some blood, so we got to chat with her and her mom. While I was talking, our nurse Kristin employed her mad ninja skills to get all Emma's chemo in and her port de-accessed without me noticing.
Another buddy, Braelyn, was inpatient with fever and low ANC, so we dropped in to visit them, too.
Cancer isn't necessarily a social thing; but we're making friends.
Back in September when Emma was diagnosed, we made some goals.
Along the top of the white board I distilled our four goals for Emma's cancer journey. I can't control how Emma handles treatment. I can't personally prevent fevers, complications, relapse, or any of the frightening possibilities. There is a lot outside our control.
We do get a say in whether our family pulls apart or whether we grow together. Clinton and I get to decide whether we will join a horrifying statistic - 80% of parents of cancer kids get divorced. That's a mind-blowingly unbelievable statistic.
Also, a lot of people going through serious major stresses frequently distance themselves from God. To paraphrase Jeffrey R. Holland, when storms rage and the sea is choppy, don't get out of the boat.
Cancer takes a lot of casualties beyond physical lives. It doesn't just kill, it leaves a mess in its wake. The fabulous doctors and nurses are responsible to fight cancer in Emma; and Emma's team fights the collateral damage that it causes.
Clinton and I are going out a couple times a month, and we're talking a lot about our feelings, our relationship, and keeping tabs on each other. We are making scheduled one-on-one time with Lizzy and Tommy. Caleb, being 10 months, gets an appropriate level of baby snuggling. We're trying to double down on faith-building priorities, especially since Clinton and I have to take turns frequently staying home with Emma when counts are low.
We're still focused on these goals we set in the hospital in September.
Friday, December 20, 2013
She Made Counts!
Emma's ANC is 1900, so she can have her scheduled chemo today. YAY!
We went to the lab yesterday and the lab techs both said "Hi, Emma," without looking at her lab sheet. Yep, we're regulars.
She gets both her vincristine and her methotrexate. We are hoping that all goes well.
Emma gets to take some toys to donate to the hematology/oncology clinic for Christmas. Emma's favorites are polly pocket princesses and play doh, so that's what we are donating today. They can clean and re-use polly pockets, but play doh is a one-use item, so we're taking a big pack. Also, we discovered a few weeks ago, the clinic can help with underwear changes due to donations. Since Emma got to use that service, we're taking in a 9-pack.
We went to the lab yesterday and the lab techs both said "Hi, Emma," without looking at her lab sheet. Yep, we're regulars.
She gets both her vincristine and her methotrexate. We are hoping that all goes well.
Emma gets to take some toys to donate to the hematology/oncology clinic for Christmas. Emma's favorites are polly pocket princesses and play doh, so that's what we are donating today. They can clean and re-use polly pockets, but play doh is a one-use item, so we're taking a big pack. Also, we discovered a few weeks ago, the clinic can help with underwear changes due to donations. Since Emma got to use that service, we're taking in a 9-pack.
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.
Tuesday, December 10, 2013
Still Low Counts
Today was our first Tuesday clinic and it was way quiet. Emma's counts are up after the double transfusion; but her ANC is only at 300.
The vincristine is going to be steady through interim maintenance; but the methotrexate is supposed to increase depending on counts. The counts are still so low that there was no methotrexate, though she did get her vincristine.
There is not really a great time to have low ANC. There is no good time to have cancer. It is particularly rough to have holiday outings with family threatened and cancelled. Dr Fair, Doug, explained that a cold isn't going to cause her serious damage; but fevers will put her in the hospital.
If she does get an infection, well, that's the big worry. That's why fevers are treated so seriously.
The vincristine is going to be steady through interim maintenance; but the methotrexate is supposed to increase depending on counts. The counts are still so low that there was no methotrexate, though she did get her vincristine.
There is not really a great time to have low ANC. There is no good time to have cancer. It is particularly rough to have holiday outings with family threatened and cancelled. Dr Fair, Doug, explained that a cold isn't going to cause her serious damage; but fevers will put her in the hospital.
If she does get an infection, well, that's the big worry. That's why fevers are treated so seriously.
Friday, December 6, 2013
Comments and Love Notes
Emma loves her love notes. We have noticed that a couple of her biggest fans haven't left any notes since we moved sites, and Grandpa explained it. How to leave a love note isn't clearly stated, so I'll tell you how it works.
First off, all the love notes from the former site are here under the "Love Notes" tab.
Then, if you want to leave a note for Emma, you have to leave it on one of the entries, like this one. At the end of the entry, there are some labels for different topics, and then it says either "No Comments" or "2 comments" or indicates how many people have wanted to tell me something about what I wrote.
If you click that comments link, then the website is going to show you a nice place to leave us a message. Emma will get the messages that you put there, because I'm going to read them to her.
We love you all, and I put a counter on here so I can see how many people are coming and getting updates. That makes us feel good because we can see how many people spend their internet time loving Emma and loving our family. I started the counter at the same number from the previous site, since that one also had a visit counter. So if you visit and you don't leave us a note, I still feel really good because I'm getting feedback from my visit counter.
First off, all the love notes from the former site are here under the "Love Notes" tab.
Then, if you want to leave a note for Emma, you have to leave it on one of the entries, like this one. At the end of the entry, there are some labels for different topics, and then it says either "No Comments" or "2 comments" or indicates how many people have wanted to tell me something about what I wrote.
If you click that comments link, then the website is going to show you a nice place to leave us a message. Emma will get the messages that you put there, because I'm going to read them to her.
We love you all, and I put a counter on here so I can see how many people are coming and getting updates. That makes us feel good because we can see how many people spend their internet time loving Emma and loving our family. I started the counter at the same number from the previous site, since that one also had a visit counter. So if you visit and you don't leave us a note, I still feel really good because I'm getting feedback from my visit counter.
Thursday, December 5, 2013
Blood and Platelets
Emma's pale face may not always register, since Momma and Daddy see her every day. Maybe she has been extra pale over the last few days. She definitely had some new awesome bruises. Add a couple nosebleeds and we made a phone call.
Emma was planning on a blood count at the lab today in preparation for chemo tomorrow, but we came to clinic instead in case she needed platelets.
As it turns out, Emma was particularly sensitive to last week's methotrexate. All her counts plummeted. For another first, she needs both blood and platelets today.
Emma's ANC is low:100. A couple weeks ago she topped out at 9000. Below 500 is really low. If she gets a fever below 500, she is admitted to the hospital.
She won't get chemo tomorrow... it will be Tuesday, instead.
Port access was great. Dr. Afify is great. We met another therapy dog: Roxy. Transfusions take enough time to chat with other kids and families, to do a craft or two, and to catch a couple Barbie movies.
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