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.
Thursday, November 28, 2013
Interim Maintenaince I
We started a new phase the day before Thanksgiving, even though the last day of Consolidation is Thanksgiving. We would have begun Friday; but who wants a cancer clinic visit in the middle of the Holiday weekend? So we overlapped a couple days.
We met Dr. Afyfy who examined Emma, answered questions, and explained the next protocol.
Consolidation had a daily oral chemotherapy and several lumbar punctures. Emma needed her anti-nausea Zofran. One morning she took the last Zofran dose in the bottle, and I called the pharmacy for a refill. When I talked to the Pharmacy tech a few hours later, she apologized; but my insurance wouldn't cover a refill until tomorrow. We could pay out-of-pocket, though.
That's a $230 bottle of 50 miligrams of pharmaceutical miracle right there. We waited. She didn't get her bedtime dose. At 4:00 am she threw up. At 4:10 am I called the pharmacy (grateful for 24-hour Walgreens) and they ran the insurance again. It cleared as payable, so at 4:30 I was at the Walgreen's drive-thru window.
Other than those dramatics and the complete unbalance in her digestive system, we managed consolidation relatively smoothly.
The first Interim Maintenance (IM1) doesn't have any home chemo at home; so I will have a heart attack every Monday for the next eight weeks when I realize that she hasn't had her Septra and it's already lunchtime. Septra is a drug with crazy potential side effects that keeps her from getting pneumonia. Chemo suppresses the body's ability to prevent a certain strain of horrible pneumonia that can easily kill an immunocompromised kid. We take it Mondays and Tuesdays for the duration of treatment.
What IM1 does have: Clinic appointments every 10 days, working around weekends... depending on her blood counts. It will not be really easy to plan that out in advance on a calendar.
In those appointments, we will have vincristine and methotrexate. The methotrexate dose will escalate each time. She will have one lumbar puncture in the middle of the phase.
If she makes her counts every single time, it is an 8 week protocol. When she misses counts, she may proceed without increasing the methotrexate, or she may delay 4 days and do counts again. So minimum 8 weeks and possibly a bit longer.
The photo was when the nurse sat down to administer the first batch of chemo for IM1. To be fair, half of those are saline flushes; but still. You might get an idea of the advantage to having a port rather than sticking that all in by needle. Further, Vincristine is really damaging to tissue and has to be going into blood, not tissue. After all, we want to kill the cancer, not the kid. Yay ports!
And just as we were going to leave, Stuart Edge brought his magic movie making, so we stuck around to get in on a youtube video, which I shared just before this entry.
We met Dr. Afyfy who examined Emma, answered questions, and explained the next protocol.
Consolidation had a daily oral chemotherapy and several lumbar punctures. Emma needed her anti-nausea Zofran. One morning she took the last Zofran dose in the bottle, and I called the pharmacy for a refill. When I talked to the Pharmacy tech a few hours later, she apologized; but my insurance wouldn't cover a refill until tomorrow. We could pay out-of-pocket, though.
That's a $230 bottle of 50 miligrams of pharmaceutical miracle right there. We waited. She didn't get her bedtime dose. At 4:00 am she threw up. At 4:10 am I called the pharmacy (grateful for 24-hour Walgreens) and they ran the insurance again. It cleared as payable, so at 4:30 I was at the Walgreen's drive-thru window.
Other than those dramatics and the complete unbalance in her digestive system, we managed consolidation relatively smoothly.
The first Interim Maintenance (IM1) doesn't have any home chemo at home; so I will have a heart attack every Monday for the next eight weeks when I realize that she hasn't had her Septra and it's already lunchtime. Septra is a drug with crazy potential side effects that keeps her from getting pneumonia. Chemo suppresses the body's ability to prevent a certain strain of horrible pneumonia that can easily kill an immunocompromised kid. We take it Mondays and Tuesdays for the duration of treatment.
What IM1 does have: Clinic appointments every 10 days, working around weekends... depending on her blood counts. It will not be really easy to plan that out in advance on a calendar.
In those appointments, we will have vincristine and methotrexate. The methotrexate dose will escalate each time. She will have one lumbar puncture in the middle of the phase.
 |
| IM1 syringe stack |
The photo was when the nurse sat down to administer the first batch of chemo for IM1. To be fair, half of those are saline flushes; but still. You might get an idea of the advantage to having a port rather than sticking that all in by needle. Further, Vincristine is really damaging to tissue and has to be going into blood, not tissue. After all, we want to kill the cancer, not the kid. Yay ports!
And just as we were going to leave, Stuart Edge brought his magic movie making, so we stuck around to get in on a youtube video, which I shared just before this entry.
Magic with Emma
Magic Stuart came and introduced Emma to her new puppy, Lily. This is the second stuffed doggy named after her cousin. Stuart Edge is a local YouTube producer.
It was a fun diversion at the end of her clinic appointment.
It was a fun diversion at the end of her clinic appointment.
Tuesday, November 26, 2013
New Address
Mom made a decision to rock the boat, upset things, and ruffle the
feathers. For several reasons, I am moving Emma's site.
Previously we have hosted her site at caringbridge.org at the recommendation of a Primary Children's social worker. Caringbridge is great for someone who hasn't blogged and isn't really super tech savvy; but I wanted the control that I could get with our new site here at princessemmareeder.blogspot.com.
I am sorry to upset the fine balance; but here are a few good things about the new address:
Previously we have hosted her site at caringbridge.org at the recommendation of a Primary Children's social worker. Caringbridge is great for someone who hasn't blogged and isn't really super tech savvy; but I wanted the control that I could get with our new site here at princessemmareeder.blogspot.com.
I am sorry to upset the fine balance; but here are a few good things about the new address:
- I get more control of the site
- You can search by topic... my keywords are at the bottom of each post
- I can share more than one photo per entry
- You can leave notes still, but by entry rather than all in one spot... until I figure out how to have a guestbook on blogspot
- You can still get an email update when I post a new entry; but you have to set it up again using the first item on the right
- No ads or solicitations
Christmas Tree
On Saturday afternoon, the youth council from South Jordan City knocked on our door and brought in our Christmas tree. I can't begin to say how much this means to us.
In they came, the tree and our new friends. While one strong man carried the tree, a couple of the teenaged friends picked up a few ornaments that dropped. Krystal Hansen, who arranged to bring it to us, cut the wrappings off. One of the friends picked up Lizzy so she could put the star on top.
They plugged it in, sang carols, and left us with PEACE and JOY and HOPE and LOVE.
We hadn't told the children that the tree was coming, and I was so overcome with the magic that I forgot to watch my children's eyes. They bounced on the couch and asked questions and were really excited for the tree to come.
Once the South Jordan Youth Council had gone and I finished crying with Clinton, I headed for the kitchen. When we set up the tree, there must be crackers and dip and egg nog and a bit of a party. I had the makings in the house; but I hadn't really planned to start up a party. It just seemed the right way to welcome a Christmas tree.
We've been playing carols since. The kids have been playing with the ornaments, rearranging them on the tree. Caleb and Tommy roll the bells like cats with bell-balls. Thanksgiving is yet to happen, and yet, it is time for the tree. Just this once.
I am so grateful for the kindness and love and giving of Christmas. We have never pictured ourselves as the family to be given a tree. We have always given to Sub-For-Santa and Angel Trees and the Salvation Army Bell Ringers and any other Christmas Time charities. Few things are more delightful than doing Santa's work. I love being an elf. I know the joy of giving, and I am humbled to have switched places. We are truly grateful. Thanks South Jordan!
In they came, the tree and our new friends. While one strong man carried the tree, a couple of the teenaged friends picked up a few ornaments that dropped. Krystal Hansen, who arranged to bring it to us, cut the wrappings off. One of the friends picked up Lizzy so she could put the star on top.
They plugged it in, sang carols, and left us with PEACE and JOY and HOPE and LOVE.
We hadn't told the children that the tree was coming, and I was so overcome with the magic that I forgot to watch my children's eyes. They bounced on the couch and asked questions and were really excited for the tree to come.
Once the South Jordan Youth Council had gone and I finished crying with Clinton, I headed for the kitchen. When we set up the tree, there must be crackers and dip and egg nog and a bit of a party. I had the makings in the house; but I hadn't really planned to start up a party. It just seemed the right way to welcome a Christmas tree.
I am so grateful for the kindness and love and giving of Christmas. We have never pictured ourselves as the family to be given a tree. We have always given to Sub-For-Santa and Angel Trees and the Salvation Army Bell Ringers and any other Christmas Time charities. Few things are more delightful than doing Santa's work. I love being an elf. I know the joy of giving, and I am humbled to have switched places. We are truly grateful. Thanks South Jordan!
Tuesday, November 19, 2013
Youtube love for Emma
My cute Sister in Law and Brother made this video for Emma. They showed it to us a bit more than a week ago, and I am sharing the youtube link with all you. It sure makes me happy.
Guess Where We Are
Evening.
Not at home.
Just Emma and me.
Unplanned.
Some new faces.
Some poeple we recognize.
Emma is watching a movie.
Did you guess the Emergency room at Primary Children's?
You are really good at this game.
Not at home.
Just Emma and me.
Unplanned.
Some new faces.
Some poeple we recognize.
Emma is watching a movie.
Did you guess the Emergency room at Primary Children's?
You are really good at this game.
Monday, November 18, 2013
SIBS
Each year Primary Children's Hospital puts on a workshop
for Super Important Brothers and Sisters, SIBS. Lizzy went and had a
marvelous time. She was happy and played with other kids who have
seriously ill brothers and sisters.
She painted and she made a life-size Lizzy portrait of what she will be when she grows up. She wants to be a Mom. Lizzy enjoyed it. I'm so glad that Primary Children's puts so much effort into the non-medical healing for children and their families.
She painted and she made a life-size Lizzy portrait of what she will be when she grows up. She wants to be a Mom. Lizzy enjoyed it. I'm so glad that Primary Children's puts so much effort into the non-medical healing for children and their families.
Tortilla Trouble
A Lumbar Puncture (LP) is a pretty simple and quick procedure. Primary
Children's Hospital developed a Rapid Treatment Unit (RTU) for quick and
easy procedures under anesthesia that don't require surgical scrubs,
hospital pajamas, or most of the stuff that goes on in OR. It is lower
stress and quicker paced than the same-day-surgery, where we have been
for Tommy's eye surgeries.
When Emma has an LP, she can't eat for 6 hours before the anesthesia. Friday I had NPO written in bold red letters on the new white board in the kitchen. NPO is a Latin acronym for "Don't feed that kid."
A little before 9:00 she asked me to make a quesadilla for breakfast, which I gladly did while Clinton was packing his lunch. We realized the faux pas after she had eaten half.
RTU wasn't staffed after 3:00, so oncology had to schedule us in the OR. We checked in with same-day surgery at 12:30 where they checked vitals and handed Emma the hospital pajamas for her procedure.
We had our regular check-up with Doug and Doctor Engle. We discussed temperatures and fevers. Even when her ANC is high and her immunity is ok, we must be careful of infections since Emma has a central line: her port. It runs directly into a major vein and, since it isn't original equipment, is a special danger for infection.
Chemo is hard on a body, and some bodies respond to chemo with fevers, even if there isn't infection or illness going on; but a fever is cause for running blood cultures and taking strong antibiotics in case it is an infection.
After our check-up, we headed for the OR. They used the same kind of quick anesthesia that she gets in the RTU; but that is a place of scrubs and hair nets and masks and shoe covers. I left Emma and sat in the surgery waiting room. Though it is a very nice waiting room, I have some tense memories that followed me in. The last time I was there, Emma was getting her port.
After the LP, I met Emma in the recovery room where she watched a movie and sipped at some juice. We got her changed back into her own clothes and she got a wagon ride to the car, as well as a new blanket.
This week we don't need an LP. If we can keep fevers down, we have a chance at a whole week away from the hospital.
When Emma has an LP, she can't eat for 6 hours before the anesthesia. Friday I had NPO written in bold red letters on the new white board in the kitchen. NPO is a Latin acronym for "Don't feed that kid."
A little before 9:00 she asked me to make a quesadilla for breakfast, which I gladly did while Clinton was packing his lunch. We realized the faux pas after she had eaten half.
RTU wasn't staffed after 3:00, so oncology had to schedule us in the OR. We checked in with same-day surgery at 12:30 where they checked vitals and handed Emma the hospital pajamas for her procedure.
We had our regular check-up with Doug and Doctor Engle. We discussed temperatures and fevers. Even when her ANC is high and her immunity is ok, we must be careful of infections since Emma has a central line: her port. It runs directly into a major vein and, since it isn't original equipment, is a special danger for infection.
Chemo is hard on a body, and some bodies respond to chemo with fevers, even if there isn't infection or illness going on; but a fever is cause for running blood cultures and taking strong antibiotics in case it is an infection.
After our check-up, we headed for the OR. They used the same kind of quick anesthesia that she gets in the RTU; but that is a place of scrubs and hair nets and masks and shoe covers. I left Emma and sat in the surgery waiting room. Though it is a very nice waiting room, I have some tense memories that followed me in. The last time I was there, Emma was getting her port.
After the LP, I met Emma in the recovery room where she watched a movie and sipped at some juice. We got her changed back into her own clothes and she got a wagon ride to the car, as well as a new blanket.
This week we don't need an LP. If we can keep fevers down, we have a chance at a whole week away from the hospital.
Thursday, November 14, 2013
ER+O2
At 5:30, Emma was on the couch under a blanket, looking out at the world
with blah in her eyes and pink in her cheeks. Temperature: 100.7
Rats.
The next 90 minutes showed a low of 100.2 (while the other ear was 100.6) and a high of 101.3. I delivered my materials to my 7:00 meeting and excused myself, went home, and called the on-call oncologist who said, yes, even if we are in a pattern we need to come to the ER.
This time her vitals indicated the use of oxygen to get her red blood cells something to deliver to her cold toes with unsatisfactory capillary refill. Emma did NOT like the oxygen. No really, she hated it.
Needles, no sweat. C/T scans, no bother. Anesthesia is a snap. Blood draws and port access are OK. Blood pressure doesn't even hit her radar. All the monitors and stickers and snaps and bracelets and such are just fine. The hose of oxygen, though, brings her to tears and crying. A Child Life specialist came and distracted Emma with an iPad and a game; but when Emma seemed happy and the Child Life Specialist needed to go see other kids in the ER, Emma fell back to weeping. We did manage to get her into a movie that brought the weeping to just a very sad face.
I'm not used to a sad face unless we're taking yucky medicine, and the sad face goes away pretty quick. They seemed to be debating whether to admit her, but they decided that we could take her home. This is really good, because I had forgotten to get my chargers and overnight bag.
The ER staff is starting to look familiar and to recognize us.
Rats.
The next 90 minutes showed a low of 100.2 (while the other ear was 100.6) and a high of 101.3. I delivered my materials to my 7:00 meeting and excused myself, went home, and called the on-call oncologist who said, yes, even if we are in a pattern we need to come to the ER.
This time her vitals indicated the use of oxygen to get her red blood cells something to deliver to her cold toes with unsatisfactory capillary refill. Emma did NOT like the oxygen. No really, she hated it.
Needles, no sweat. C/T scans, no bother. Anesthesia is a snap. Blood draws and port access are OK. Blood pressure doesn't even hit her radar. All the monitors and stickers and snaps and bracelets and such are just fine. The hose of oxygen, though, brings her to tears and crying. A Child Life specialist came and distracted Emma with an iPad and a game; but when Emma seemed happy and the Child Life Specialist needed to go see other kids in the ER, Emma fell back to weeping. We did manage to get her into a movie that brought the weeping to just a very sad face.
I'm not used to a sad face unless we're taking yucky medicine, and the sad face goes away pretty quick. They seemed to be debating whether to admit her, but they decided that we could take her home. This is really good, because I had forgotten to get my chargers and overnight bag.
The ER staff is starting to look familiar and to recognize us.
Wednesday, November 13, 2013
ER Frequent Visitor Card
Some folks on Facebook are sharing something they are grateful for every day. November doesn't have enough days to even hit the big ones for me. I am grateful we have insurance, because a week in the hospital and 4 ER visits this month, plus weekly anesthesia and chemotherapy and transfusions all together must come to a price tag that doesn't bear thinking of. High deductible isn't so bad when you consider where we've already been.
I am thankful for the small army that watches my kids during all these appointments for leukemia and cataracts and ADD and cardiology. I am thankful for well wishes and cards and packages and blankets and gift cards and a "few bucks" for gas. My sister tells me that 3 "medium grade crises" combine to make a big crisis. She may have a point.
I am thankful for my husband. We work together. We are a team. We are determined that we are coming out of this with a better marriage, and I am so grateful for him.
I am grateful for our four kiddos, without which there wouldn't be quite as much medical drama, and who provide me with purpose and joy and meaning in everything I do. They enrich everything worth doing.
I am grateful for the crowd of folks who visit this site and read my ramblings and take an interest in the drama that is playing out in our lives right now. Emma is doing pretty well today. I expect that we won't be punching our ER card tonight. For that I am thankful.
Monday, November 11, 2013
Caring for the Caregivers
I gotta shout out to our awesome family that takes such care of us.
Friday after melting in the hospital hallway, it was clear that our
night-out couldn't come soon enough.
Clinton's folks gave us a pair of movie passes, my Dad sent me a gift card to the Cheesecake factory, and Emma's Aunt Aleigh was in town from California and generously watched the kids and sent us out for the evening.
Emma was cleared for church, and she earned a lot of looks and smiles and comments. After church, we headed for my Mom's for dinner where we caught the premier of Emma's own support movie. Cousins, aunts, uncles, and grandparents combined to make a 5-minute love note of inspiration and support.
We are so grateful to have such a great support network to hold us up and love us. Thanks for loving Emma and for loving her family.
Clinton's folks gave us a pair of movie passes, my Dad sent me a gift card to the Cheesecake factory, and Emma's Aunt Aleigh was in town from California and generously watched the kids and sent us out for the evening.
Emma was cleared for church, and she earned a lot of looks and smiles and comments. After church, we headed for my Mom's for dinner where we caught the premier of Emma's own support movie. Cousins, aunts, uncles, and grandparents combined to make a 5-minute love note of inspiration and support.
We are so grateful to have such a great support network to hold us up and love us. Thanks for loving Emma and for loving her family.
Chemo Makes Her Sick
When we started out, the most expensive prescription we brought home was
zofran, to combat nausea. I was a little irritated that we had a $215
bottle of medication that she didn't need and wasn't using.
Consolidation features mercaptopurine (MP-6), which is a chemotherapy that is a bit different from the varieties we had during induction. We are now using the zofran and I'm grateful to have this expensive drug in my chemo box.
As we know already, we were in the ER Monday and Tuesday night. Thursday I took our 2-year old boy to Primary Children's for a follow-up on his cataract and scheduled an exam under anesthesia for him right before Christmas.
Friday, my fourth trip to Primaries in a week, we met another Oncologist, Jennifer A Wright. Hehe. That's my sister's name. Emma's ANC keeps getting better and Emma was cleared to go to church. [YIPEE]
Her nearly-weekly lumbar puncture (LP) is a lot like an epidural. Kids don't like needles in their backs and are prone to scream and squirm, so to solve this difficulty, they do LPs under light anesthesia. I left the procedure room with her sleeping and sat down in the hall and - for the first time really since all this started - had a good sobbing cry.
Emma sailed through like a rock star. The anesthesia was a bit heavier than usual and she was pretty doped for the rest of the day. Also, we are working on balancing the laxative; is it balanced if you have both constipation and diarrhea at once? Ah what a miracle it is that human digestive systems usually just work.
Largely, though, she is doing well and usually in good spirits. I love to see that girl smile. Maybe it's with every kid, but the doctors and nurses act like they won some bet or contest to get to see Emma. Doug, Emma's primary oncologist, got after Dr. Wright for snatching his Emma exam when he was getting out of a meeting. Even though it may be part of their approach, I feel like Emma is a favorite for her smiles and giggles.
Consolidation features mercaptopurine (MP-6), which is a chemotherapy that is a bit different from the varieties we had during induction. We are now using the zofran and I'm grateful to have this expensive drug in my chemo box.
As we know already, we were in the ER Monday and Tuesday night. Thursday I took our 2-year old boy to Primary Children's for a follow-up on his cataract and scheduled an exam under anesthesia for him right before Christmas.
Friday, my fourth trip to Primaries in a week, we met another Oncologist, Jennifer A Wright. Hehe. That's my sister's name. Emma's ANC keeps getting better and Emma was cleared to go to church. [YIPEE]
Her nearly-weekly lumbar puncture (LP) is a lot like an epidural. Kids don't like needles in their backs and are prone to scream and squirm, so to solve this difficulty, they do LPs under light anesthesia. I left the procedure room with her sleeping and sat down in the hall and - for the first time really since all this started - had a good sobbing cry.
Emma sailed through like a rock star. The anesthesia was a bit heavier than usual and she was pretty doped for the rest of the day. Also, we are working on balancing the laxative; is it balanced if you have both constipation and diarrhea at once? Ah what a miracle it is that human digestive systems usually just work.
Largely, though, she is doing well and usually in good spirits. I love to see that girl smile. Maybe it's with every kid, but the doctors and nurses act like they won some bet or contest to get to see Emma. Doug, Emma's primary oncologist, got after Dr. Wright for snatching his Emma exam when he was getting out of a meeting. Even though it may be part of their approach, I feel like Emma is a favorite for her smiles and giggles.
Wednesday, November 6, 2013
Hot Stuff
And we did end up at the ER with the fever for more antibiotic, plus
blood draw, urinalysis, and that sort of thing. Got home at about 11:30
with a tired little girl that has a normal temperature.
Tuesday, November 5, 2013
ER again
Written Nov 5, 2013 5:41pm
After the last post about the sickies, can we be
surprised that Emma came up with a fever? It was cold and she was
snuggled under a blanket, so it took me a bit to notice the pink cheeks
and general malaise. (That's a new vocabulary word.)At 6:00 I took her temp. 103.1. I might have said a naughty word. I called the on-call oncologist, who needed to be paged. I called Clinton and got voice mail as I was tossing my warm slippers and Emma's toothbrush in the "go" bag. (note to self: get a "go" toothbrush for Emma.) I texted him: "temp 103. come home." I called again, and he sent me to voice mail again.
I tossed my phone charger and tablet charger in my bag and called a neighbor. Clinton called back and said he would be home in 20 minutes. Sylvia walked in the door as I was tossing a sandwich and water bottle into my bag. We passed Clinton just before the freeway.
At 6:40 the oncologist called back, having been with a patient. She said to go to the ER, and I told her I'd be there in 10 minutes.
Port access was great. Not all nurses do great with ports; but ours thinks they ought to be installed at birth and continue through death since they are so obviously superior to regular vein access.
Emma got an antibiotic and a lot of fluids. They gave her Tylenol to bring down the fever. They took a virus culture (negative) and a pee sample. Her blood counts were terrific - ANC being 5100. 500 is the border for trouble, and Emma's last lab was 2000, so this is a huge uptick.
Her heart rate wouldn't settle for a long time. Temperature eventually got down to warm instead of feverish, and because her counts were so good, the oncologist sent us home.
The trouble is that the fever has been tylenol-controlled all day. The antibiotic is good for 24 hours. She got the antibiotic just after 7:00, so really no more Tylenol after about 5. If she continues this silly fever after about 6:00, the antibiotic expires and we're having another conversation with the on-call oncologist.
Wish us luck and hope this fever gets itself under control.
Saturday, November 2, 2013
Sick Siblings
How do you keep them separate? I've got one with a pretty steady fever
over 18 hours. I've got one that pukes. (gross) And I've got a fussy
clingy baby without symptoms beyond fussy and clingy. And I've got
little miss Leukemia.
Emma slept in the living room, and we're trying to keep the sickies downstairs and Emma upstairs today; but they all really just want to get in each others' spaces and share germs.
Emma slept in the living room, and we're trying to keep the sickies downstairs and Emma upstairs today; but they all really just want to get in each others' spaces and share germs.
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.
Monday, October 28, 2013
Raspberry Fingers
I'm posting a few pictures. Since this site allows one
photo per post, I'll just show you the raspberry fingers right here.
Thanks for the Raspberries, Grammy.
11/26 EDIT: Since moving this site from caringbridge.org, I have freedom to post multiple photos. So here is Emma the month before diagnosis and Emma at the end of induction, for comparison.
11/26 EDIT: Since moving this site from caringbridge.org, I have freedom to post multiple photos. So here is Emma the month before diagnosis and Emma at the end of induction, for comparison.
Saturday, October 26, 2013
Our First ER Visit
Thursday after music Emma was pretty tired. This is normal: she tends to
be tired in the afternoons, particularly after an outing, even just a
blood draw at the lab down the street. Also, for background, Clinton and
the boys heroically fought colds last week and this week it was my
turn.
When her temperature stays above 100.4 for an hour, or when it reaches 101, we call the doctors, and they treat it like an infection which surely means going to clinic or ER and possibly hospital admittance.
Emma stayed pretty lethargic, so we started watching her temperature. At about 6:00 her temp was 100.8. At 6:30 it was 101.9 and we called. While we were waiting for the on-call oncologist to return the call, Clinton and I tossed stuff into a suitcase for an overnighter. Dayna called as I was zipping up and said to come in.
Emma and I jumped in the car and got to Primary's Emergency Room just after 7:00. As we walked through the door, the receptionist asked if this was Emma and we went right in. Incidentally, 20.8Kg is her highest weight, and probably will be for a while since we're off steroids.
They accessed her port, took blood, gave her an antibiotic, some tylenol, and some fluids. The doctor was concerned about her tummy being so tender. She's been battling constipation - a common side effect of her treatment.
They did an X-ray of her tummy. Her fever came down a bit. We watched Swan Princess. Her X-ray showed a lot of constipation and impacted blockage. We started another movie. Her temperature got to normal.
The doctor explained about typhlitis and wanted to be sure we weren't getting that, which would be a really bad thing. At 11:00 she took the contrast (dye) for a C/T scan, which takes an hour to work through the system. At midnight we went in for the C/T scan. At about 1:15 the C/T scan came back negative. YAY! Discharge orders, de-access port, and we were home right at 2:00 a.m.
Next day the fever did not return. They figure it's viral; but we need to keep a watch on her. And we get the weekend to try to clear the constipation with miralax and prune juice before taking more aggressive action. Ugh, I know. Gross; but that's one of the complications of treatment for Leukemia.
When her temperature stays above 100.4 for an hour, or when it reaches 101, we call the doctors, and they treat it like an infection which surely means going to clinic or ER and possibly hospital admittance.
Emma stayed pretty lethargic, so we started watching her temperature. At about 6:00 her temp was 100.8. At 6:30 it was 101.9 and we called. While we were waiting for the on-call oncologist to return the call, Clinton and I tossed stuff into a suitcase for an overnighter. Dayna called as I was zipping up and said to come in.
Emma and I jumped in the car and got to Primary's Emergency Room just after 7:00. As we walked through the door, the receptionist asked if this was Emma and we went right in. Incidentally, 20.8Kg is her highest weight, and probably will be for a while since we're off steroids.
They accessed her port, took blood, gave her an antibiotic, some tylenol, and some fluids. The doctor was concerned about her tummy being so tender. She's been battling constipation - a common side effect of her treatment.
They did an X-ray of her tummy. Her fever came down a bit. We watched Swan Princess. Her X-ray showed a lot of constipation and impacted blockage. We started another movie. Her temperature got to normal.
The doctor explained about typhlitis and wanted to be sure we weren't getting that, which would be a really bad thing. At 11:00 she took the contrast (dye) for a C/T scan, which takes an hour to work through the system. At midnight we went in for the C/T scan. At about 1:15 the C/T scan came back negative. YAY! Discharge orders, de-access port, and we were home right at 2:00 a.m.
Next day the fever did not return. They figure it's viral; but we need to keep a watch on her. And we get the weekend to try to clear the constipation with miralax and prune juice before taking more aggressive action. Ugh, I know. Gross; but that's one of the complications of treatment for Leukemia.
Friday, October 25, 2013
Let's Play Music!
Emma's music class is held weekly, and parents attend with their kiddos
every other week. This was a parents' week. Emma was excited to be able
to go and happy to be in a mask if that's what it takes to participate.
She mostly sat in my lap and watched the play. Pretty soon she started laughing. She did play the autoharp and her bells. She had me carry her when we made a train, and she mostly just watched the lion hunt. Toward the end, she was starting to talk and sing and answer questions and take her turn.
She wasn't really active; but she seemed to really enjoy the outing. I am hoping for more days that are healthy enough for Playing Music.
She mostly sat in my lap and watched the play. Pretty soon she started laughing. She did play the autoharp and her bells. She had me carry her when we made a train, and she mostly just watched the lion hunt. Toward the end, she was starting to talk and sing and answer questions and take her turn.
She wasn't really active; but she seemed to really enjoy the outing. I am hoping for more days that are healthy enough for Playing Music.
Wednesday, October 23, 2013
Day 29
We finished the induction phase.
This morning Emma was super unhappy to miss breakfast, but it's a celebration day, anyway. No more Prilosec, which is decidedly the worst medicine she gets. Its job is to counter the side effects of the Dexamethasone, which we are done with for now, anyway.
She giggled through port access again, today.
Her labs are looking great: the doctors approved Emma to go to her music class (6 other kids in the class) with a mask as long as nobody else is sick. She also does get **Limited** trick or treating for Halloween. Just a few houses, in a mask, and not around anybody sick.
She got anesthetized for another lumbar puncture and another Bone Marrow Aspirate. She was a champ for all of that.
Now we get a week to recover. We expect to hear about the bone marrow in the next few days, and then in November we start the next round. The specific protocol depends on her counts.
Thanks so much to all of Emma's team for supporting us and walking with us through this. One round down.
This morning Emma was super unhappy to miss breakfast, but it's a celebration day, anyway. No more Prilosec, which is decidedly the worst medicine she gets. Its job is to counter the side effects of the Dexamethasone, which we are done with for now, anyway.
She giggled through port access again, today.
Her labs are looking great: the doctors approved Emma to go to her music class (6 other kids in the class) with a mask as long as nobody else is sick. She also does get **Limited** trick or treating for Halloween. Just a few houses, in a mask, and not around anybody sick.
She got anesthetized for another lumbar puncture and another Bone Marrow Aspirate. She was a champ for all of that.
Now we get a week to recover. We expect to hear about the bone marrow in the next few days, and then in November we start the next round. The specific protocol depends on her counts.
Thanks so much to all of Emma's team for supporting us and walking with us through this. One round down.
Monday, October 21, 2013
Our Neighbors
We moved to Utah and bought our house 19 months ago. We have some great neighbors here.
Anybody who has ever had the chore of organizing the Friends of Scouting donation drive will sympathise with Clinton, since this year it was his turn to organize the volunteers to knock on 300 doors and invite folks to donate. So he and I were trying to get 30 volunteers to take 10 houses each, making calls, organizing materials... it's a bit of a chore. We were mid-drive when Emma was diagnosed.
We had a couple folks offer to take the whole Friends of Scouting thing out of our hands. One morning, after a few hours sleep n my own bed, at around 7:00 in he morning I put a grocery bag on a neighbor's porch, and that friend took over the Friends of Scouting. You could say he did a good turn that day.
When word got around our neighborhood that we were at the hospital, I got a call from a neighbor. She has been an organizer for the Festival of Trees for years, which is a convention of donated Christmas Trees, Gingerbread Houses, Wreaths, and other Holiday finery that are auctioned and sold in benefit of Primary Childrens Hospital.
In her role, she knows some of the really highly positioned people at the hospital. Her call to me was to be sure that I had everything that I might need. If anything was amiss, she would get to the bottom and fix it. I must say in support of our nurses and doctors, there wasn't a thing I could ask for. Having her on my side so fiercely, though, sure did feel comforting in the midst of our first week with Leukemia.
When we got home from the hospital, meals were organized. They brought food to keep me from having to go to the store. They have watched my kids while Emma has had appointments. They have swept my kitchen floor. Since Emma can't go to church, they have brought church to her. They visited us in the hospital, sent notes and coloring books and encouragement to us.
We have a great neighborhood. We have thoughtful friends. We moved into a patch of really great people. I hope to be nearly as useful to them as they have been to us. Thanks, neighbors.
Anybody who has ever had the chore of organizing the Friends of Scouting donation drive will sympathise with Clinton, since this year it was his turn to organize the volunteers to knock on 300 doors and invite folks to donate. So he and I were trying to get 30 volunteers to take 10 houses each, making calls, organizing materials... it's a bit of a chore. We were mid-drive when Emma was diagnosed.
We had a couple folks offer to take the whole Friends of Scouting thing out of our hands. One morning, after a few hours sleep n my own bed, at around 7:00 in he morning I put a grocery bag on a neighbor's porch, and that friend took over the Friends of Scouting. You could say he did a good turn that day.
When word got around our neighborhood that we were at the hospital, I got a call from a neighbor. She has been an organizer for the Festival of Trees for years, which is a convention of donated Christmas Trees, Gingerbread Houses, Wreaths, and other Holiday finery that are auctioned and sold in benefit of Primary Childrens Hospital.
In her role, she knows some of the really highly positioned people at the hospital. Her call to me was to be sure that I had everything that I might need. If anything was amiss, she would get to the bottom and fix it. I must say in support of our nurses and doctors, there wasn't a thing I could ask for. Having her on my side so fiercely, though, sure did feel comforting in the midst of our first week with Leukemia.
When we got home from the hospital, meals were organized. They brought food to keep me from having to go to the store. They have watched my kids while Emma has had appointments. They have swept my kitchen floor. Since Emma can't go to church, they have brought church to her. They visited us in the hospital, sent notes and coloring books and encouragement to us.
We have a great neighborhood. We have thoughtful friends. We moved into a patch of really great people. I hope to be nearly as useful to them as they have been to us. Thanks, neighbors.
Thursday, October 17, 2013
Blankets
When Tommy had his first surgery at Primary Childrens last summer, they
gave hime a hand-crocheted blanket. We snuggled him up in that and
brought him home with it. After his second surgery, there was
store-bought fleece blanket, again, donated.
Emma had a couple blankets waiting on her bed when we checked in. Of course, the hospital blankets, but also a lovely pink fleece, and my favorite that disappeared, perhaps to the laundry with a linen change. That one was a tied quilt, not pieced, but cute animals on top, batting inside, flannel on bottom, and bound beautifully. She scored a pink monkey fleece blanket during her echocardiogram. When we went to church in the hospital auditorium, she got a fabulous big fleece blanket with a patch sewn on from he branch that provides church meetings.
I don't know who makes and donates blankets to the hospital; but I love them. They are so personal and comforting. They are so welcome.
Jim and Tina, friends of mine from before my marriage, sent Emma two beautiful pieced toddler quilts and my neighbor, Robyn, made a quilt, too, just for Emma.
They are so friendly and personal, like a hug that you can hold on to again and again. Emma has a couple on her bed, one on the couch, one in the family room. She moves them and rotates them and knows which are in the laundry.
What an incredibly thoughtful thing is a blanket. To Tina, Robyn, and the PCMC blanket donors, thank you so much.
Emma had a couple blankets waiting on her bed when we checked in. Of course, the hospital blankets, but also a lovely pink fleece, and my favorite that disappeared, perhaps to the laundry with a linen change. That one was a tied quilt, not pieced, but cute animals on top, batting inside, flannel on bottom, and bound beautifully. She scored a pink monkey fleece blanket during her echocardiogram. When we went to church in the hospital auditorium, she got a fabulous big fleece blanket with a patch sewn on from he branch that provides church meetings.
I don't know who makes and donates blankets to the hospital; but I love them. They are so personal and comforting. They are so welcome.
Jim and Tina, friends of mine from before my marriage, sent Emma two beautiful pieced toddler quilts and my neighbor, Robyn, made a quilt, too, just for Emma.
They are so friendly and personal, like a hug that you can hold on to again and again. Emma has a couple on her bed, one on the couch, one in the family room. She moves them and rotates them and knows which are in the laundry.
What an incredibly thoughtful thing is a blanket. To Tina, Robyn, and the PCMC blanket donors, thank you so much.
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.
Wednesday, October 16, 2013
Day 22
Saturday, October 12, 2013
Friday Transfusion
Emma had a platelet transfusion Wednesday, so I didn't suspect low
platelets, the typical culprit in bloody noses. One in the evening and
another during the night. Clinton elected to work from home in case Emma
needed to go in. The boys would be fine watching movies and trying to
distract him a bit.
After three 15-18 minute bloody noses, we called the clinic. "Come in," they said. And then she had another bloody nose. They ordered Plateletes for her just in case she needed a platelet transfusion.
It takes a bit of time. Think of any doctor's office when they "fit you in." Waiting room, vitals, room number 5. Tell the nurse why you're in and discuss symptoms. Right?
Port access is a sterile procedure that takes a few minutes. Take the blood sample to send off to the lab. Wait a bit for the doctor. When he comes, go over the current symptoms. How to handle bloody noses, try Afrin, use it this way, not too much. Like this.
The labs came back, and sure enough it wasn't low plateletes; however, her hematocrit was pretty low and they recommended a full transfusion. For that, though, she needed her blood types and cross-matched because they do it every time. That took a couple hours, and then her blood was ready. They take a couple hours to give blood because it would be bad to shock the system. After a transfusion, they need to watch for adverse reactions for at least 30 minutes.
10:30 untill 4:30. That's a full day. I am so grateful that Clinton's job allows him to work from home while supervising the boys' naps, movies, and meals.
After three 15-18 minute bloody noses, we called the clinic. "Come in," they said. And then she had another bloody nose. They ordered Plateletes for her just in case she needed a platelet transfusion.
It takes a bit of time. Think of any doctor's office when they "fit you in." Waiting room, vitals, room number 5. Tell the nurse why you're in and discuss symptoms. Right?
Port access is a sterile procedure that takes a few minutes. Take the blood sample to send off to the lab. Wait a bit for the doctor. When he comes, go over the current symptoms. How to handle bloody noses, try Afrin, use it this way, not too much. Like this.
The labs came back, and sure enough it wasn't low plateletes; however, her hematocrit was pretty low and they recommended a full transfusion. For that, though, she needed her blood types and cross-matched because they do it every time. That took a couple hours, and then her blood was ready. They take a couple hours to give blood because it would be bad to shock the system. After a transfusion, they need to watch for adverse reactions for at least 30 minutes.
10:30 untill 4:30. That's a full day. I am so grateful that Clinton's job allows him to work from home while supervising the boys' naps, movies, and meals.
Thursday, October 10, 2013
Second Clinic
We got to clinic and Emma weighed in 2 Kg heavier this week. That's 4
1/2 pounds of lasagna, chicken nuggets, enchiladas, and steroids this
week.
We got our favorite nurse again, Becky. Becky was our night nurse twice while inpatient, and she also works the clinic on Wednesdays and Fridays. She loves, loves Emma, and we love her, too.
I had forgotten to numb Emma's port, so while we waited on the numbing cream, one of the Child Life gals came in and reviewed port access with Emma. She brought a doll and supplies, and Emma prepped and accessed the doll, put on a "sterile" dressing, then gave her medicine (Food-colored water.)
This is Emma's third practice doll, and this one she named Lizzy. Lizzy-doll got a lot of medicine and leaked right through her cotton skin. :) Don't worry, though. Leaky as she was, we love her enough to bring her home.
We talked with a resident and an attending oncologist about Emma's increasing limp, what hurts and why, and how to deal with it. We discussed her meds. We discussed all our concerns, her changes, and her labs.
Then we got her next dose of chemotherapy and we were cleared to go.
We got our favorite nurse again, Becky. Becky was our night nurse twice while inpatient, and she also works the clinic on Wednesdays and Fridays. She loves, loves Emma, and we love her, too.
I had forgotten to numb Emma's port, so while we waited on the numbing cream, one of the Child Life gals came in and reviewed port access with Emma. She brought a doll and supplies, and Emma prepped and accessed the doll, put on a "sterile" dressing, then gave her medicine (Food-colored water.)
This is Emma's third practice doll, and this one she named Lizzy. Lizzy-doll got a lot of medicine and leaked right through her cotton skin. :) Don't worry, though. Leaky as she was, we love her enough to bring her home.
We talked with a resident and an attending oncologist about Emma's increasing limp, what hurts and why, and how to deal with it. We discussed her meds. We discussed all our concerns, her changes, and her labs.
Then we got her next dose of chemotherapy and we were cleared to go.
Corrections
I do have a lovely computer; but I am keeping this site almost exclusively using a 7-inch tablet. Sometimes I use the bluetooth keyboard
that I stole from my husband, and sometimes I use the little on-screen
keyboard. I just read through a couple posts back and fixed some of the
typos I have allowed. Ugh. The professional writer and editor within is
horrified.
Positive
I like to stay positive and share the amazing great inspiring stories,
because there are a lot. An overwhelming amount of kindness is directed
at us.
Even so, this is a bit hard. We are struggling to find a balance for things that we were not good at: teaching the kids chores, fitting in music practice, individual time for the kids, a controlled budget, daily 20 minutes of reading and the addition facts that we gotta know in second grade, potty training, personal study time, yardwork... These are things that I was struggling to balance and take care of consistently.
Life, in short, is not simple. Parenting takes a lot of focus and effort.
Throw in a medium grade crisis, and my plates stop spinning.
I call Leukemia a medium-grade crisis. It has a cure, and we will very likely get that cure. We don't have a lifetime chronic thing, and we're probably going to get out without having to bury any children. It isn't a huge, giant, life-changing crisis. My heart weeps for the parents and spouses that get those, and for the people who live through them.
For those that don't know us very well, Leukemia is our third medium-grade crisis. In 2011 Lizzy had heart surgery for a congenital heart defect. It was corrected with surgery and she's good to go for life. In 2012 Tommy, at one year old, had a cataract removed from his right eye and his doctors say we averted certain blindness in that eye.
These are examples of medium-grade crises. At the time they throw our plans out of balance; but we lean on friends, we pray, we take one day at a time, and we get through. Hopefully a bit stronger and more able to handle the next bump in our road.
We can do hard things. We can figure out what things are most important, and we can take the daily steps to meet our goals. We can adjust for events out of our control and we can take a moment to scream or cry and then get back to winning.
I can take joy in the times that Emma needs a snuggle. I can let the excersise be less important and my lap can have room for more munchkins to get some mommy attention. We can gratefully accept the help that we need. We can see the hand of God in the actions of those who are holding us up.
We have so much to be grateful for. I have so many more stories of goodness that have yet to be written, and some that I won't share publicly. We are going to get through. I am sure. I am positive.
Even so, this is a bit hard. We are struggling to find a balance for things that we were not good at: teaching the kids chores, fitting in music practice, individual time for the kids, a controlled budget, daily 20 minutes of reading and the addition facts that we gotta know in second grade, potty training, personal study time, yardwork... These are things that I was struggling to balance and take care of consistently.
Life, in short, is not simple. Parenting takes a lot of focus and effort.
Throw in a medium grade crisis, and my plates stop spinning.
I call Leukemia a medium-grade crisis. It has a cure, and we will very likely get that cure. We don't have a lifetime chronic thing, and we're probably going to get out without having to bury any children. It isn't a huge, giant, life-changing crisis. My heart weeps for the parents and spouses that get those, and for the people who live through them.
For those that don't know us very well, Leukemia is our third medium-grade crisis. In 2011 Lizzy had heart surgery for a congenital heart defect. It was corrected with surgery and she's good to go for life. In 2012 Tommy, at one year old, had a cataract removed from his right eye and his doctors say we averted certain blindness in that eye.
These are examples of medium-grade crises. At the time they throw our plans out of balance; but we lean on friends, we pray, we take one day at a time, and we get through. Hopefully a bit stronger and more able to handle the next bump in our road.
We can do hard things. We can figure out what things are most important, and we can take the daily steps to meet our goals. We can adjust for events out of our control and we can take a moment to scream or cry and then get back to winning.
I can take joy in the times that Emma needs a snuggle. I can let the excersise be less important and my lap can have room for more munchkins to get some mommy attention. We can gratefully accept the help that we need. We can see the hand of God in the actions of those who are holding us up.
We have so much to be grateful for. I have so many more stories of goodness that have yet to be written, and some that I won't share publicly. We are going to get through. I am sure. I am positive.
Wednesday, October 9, 2013
No Surprises
Our clinic went slick and well. We even finished in enough time to get
Lizzy to her doctor appointment. Not bad. Emma had a good day, though
surely a busy one.
Day 15
We have made it through 2 weeks, and today is halfway through the
induction phase. Last Wednesday was a bit rough, and was our first
clinic day. Today is our clinic day as well. Yesterday wasn't at all
rough; yet some how it left me feeling like I am spinning out of
control.
There is little, in truth, that I can actually control.
Clinton is fighting with vitamins, soap, plenty of water,and Listerine to squelch the beginnings of the cold that Emma's little brothers have. So far Emma, Lizzy, and Momma are OK.
We are hoping for good things today in clinic. To all who are praying for us and thinking of us, thank you.
There is little, in truth, that I can actually control.
Clinton is fighting with vitamins, soap, plenty of water,and Listerine to squelch the beginnings of the cold that Emma's little brothers have. So far Emma, Lizzy, and Momma are OK.
We are hoping for good things today in clinic. To all who are praying for us and thinking of us, thank you.
Monday, October 7, 2013
Family Gathering
Emma's Aunt Aleigh flew in for the weekend to see Emma. She came over
Saturday morning, and then brought crafts, hats, scarves, and a book
about Emma on Saturday evening. The kids stuck googly eyes to paper and
played with pipe cleaners for more than an hour with their Auntie.
Sunday was family dinner at Grandma's and I was really hesitant to bring Emma. She is going a little stir crazy, though, with her only outings involving needles. We braided her hair so the mask would stay put, and we headed to dinner. She lasted about 90 minutes and seemed to love playing with cousins and cuddling with her Aunt Shawnya.
About the time birthday cake came out, she was worn out and I brought her home. She went straight to bed without the slightest fuss.
We have a big family. We have 2 big families - Reeder side being 22 this weekend, several not in attendance. My side is a few more. And yet, when I asked specifically about her music class of 7 kids, the doctor said, "not while she is so compromised."
I hope the risk turns out ok.
Sunday was family dinner at Grandma's and I was really hesitant to bring Emma. She is going a little stir crazy, though, with her only outings involving needles. We braided her hair so the mask would stay put, and we headed to dinner. She lasted about 90 minutes and seemed to love playing with cousins and cuddling with her Aunt Shawnya.
About the time birthday cake came out, she was worn out and I brought her home. She went straight to bed without the slightest fuss.
We have a big family. We have 2 big families - Reeder side being 22 this weekend, several not in attendance. My side is a few more. And yet, when I asked specifically about her music class of 7 kids, the doctor said, "not while she is so compromised."
I hope the risk turns out ok.
Hobbit Habits
Emma was up bright and early and hungry. I staggered into the kitchen
and made her 3 eggs scrambled. She chattered away as I cooked and sort
of woke up. I put the plate in front of her and went to brush my teeth.
By the time I returned to the kitchen, she had inhaled her eggs and wanted another plate, so I made 2 eggs. She finished those with some lemonade and got Lizzy up.
Lizzy and Tommy wanted french toast, and Emma asked for lasagna. She got the last square. She's been asking for lasagna and enchiladas a lot. I'm out of both, now. Gotta do some cooking, I guess.
So, she has had her second breakfast. I'm gearing up for elevensies and wondering if I can get away with just sandwhiches for that.
By the time I returned to the kitchen, she had inhaled her eggs and wanted another plate, so I made 2 eggs. She finished those with some lemonade and got Lizzy up.
Lizzy and Tommy wanted french toast, and Emma asked for lasagna. She got the last square. She's been asking for lasagna and enchiladas a lot. I'm out of both, now. Gotta do some cooking, I guess.
So, she has had her second breakfast. I'm gearing up for elevensies and wondering if I can get away with just sandwhiches for that.
Friday, October 4, 2013
Beyond my Experience
FedEx brought a box to Emma today. It contained a doodle
pad, a coloring book, a sticker activity book, colored pencils, pajamas,
a DVD, and a plush ladybug in her house.
Really nice, and full of great treats for Emma. We have had packages and cards come over the last week, and we have loved and appreciated each. We are frequently touched by the generosity and thoughtfulness of our family and friends.
The thing that blows my mind about this one is that I do not know the senders. Five ladies that work with my Dad 2000 miles from us are somehow concerned about my little girl. They pray for her, they think of her, and they mailed her a package of love that's full of things that she will love.
I don't know really how I came to be on the front row of this; but I am astonished at the care and kindness of so many people that are taking an interest in the concerns of my little girl.
The government may be shut down; but humanity is certainly not broken. We don't see the end of the world; we see thoughtfulness and gentleness. That isn't to say that everything is a picnic; but from where we sit, it looks as though the silver lining is trying to overcome the cloud.
Really nice, and full of great treats for Emma. We have had packages and cards come over the last week, and we have loved and appreciated each. We are frequently touched by the generosity and thoughtfulness of our family and friends.
The thing that blows my mind about this one is that I do not know the senders. Five ladies that work with my Dad 2000 miles from us are somehow concerned about my little girl. They pray for her, they think of her, and they mailed her a package of love that's full of things that she will love.
I don't know really how I came to be on the front row of this; but I am astonished at the care and kindness of so many people that are taking an interest in the concerns of my little girl.
The government may be shut down; but humanity is certainly not broken. We don't see the end of the world; we see thoughtfulness and gentleness. That isn't to say that everything is a picnic; but from where we sit, it looks as though the silver lining is trying to overcome the cloud.
Thursday, October 3, 2013
Subtle Changes and a Tweak
Steroids make a body bulk up a bit... which is why some bodies choose to use steroids. Emma's cheeks are getting a bit puffy as she takes on a bit of the leukemia look. Her steroids also make her a super hungry little person, so whether it's the steroids or the extra calories, we can detect a slight thickening around her belly.
She still has all her hair; but she knows she will lose it. Emma doesn't like to talk about it. Her aunt is making a hat, or maybe a few. Gramma Linda has sent a couple hats already that are awfully cute. Like I say, though, Emma doesn't like to talk about hair. She lets me brush it, but she doesn't want it even braided or put in a barette any more. Just hanging loose, while she still can.
She really doesn't want to walk. She will walk where she wants to go; but if we want her to come to dinner, to go to bed, or to be anywhere, then she wants to be carried. Discomfort can be tolerated on her own errands, but not on Momma's. Which leads us to Clinton spending today working from home with a tweaked back, sitting on an ice pack and being good friends with some Tylenol. Not just carrying Emma, but also carrying Tommy and Caleb, moving furniture at my behest, and being slightly stressed.
Emma is doing pretty well today. Took a good long morning nap and had energy to play really well with Lizzy and Tommy in the afternoon. She tried a new variation today with her steroid: instead of magic shell, we tried it with Caramel sauce. The verdict: also an acceptable mask for the medicine.
Wednesday, October 2, 2013
First Clinic
9:00 am we arrived for our clinic appointment. Check vitals, and since
Emma's port has only been accessed once, and that under anesthesia, we
had some kid learning for that. Then the access, for which Emma was a
super star. We met with a fellow and an attending doc. Doug also came by
to see how we are doing.
Then we had her Vincristine and started a platelet transfusion.
At noon, the platelets were still running, but it was time for the lumbar puncture, under general anesthesia.
The steroids are making her HUNGRY, so fasting until then made her a tad bit moody and unhappy. She went through 2 bags of cheetos, a bag of sun chips, grape juice, orange soda, and at least 5 cheeses.
Her heart rate was pretty rapid, particularly elevated for her last week, so we waited a couple hours on fluid before they were satisfied and sent her home.
Lizzy had meanwhile gotten home, gone to a neighbor, and gotten her homework done. That wasn't the plan; but it worked out. I am so grateful for excellent friends and neighbors. So that was our first clinic day.
I thought we were getting into a groove and kind of had this, and today proved that I have nothing at all under control.
Then we had her Vincristine and started a platelet transfusion.
At noon, the platelets were still running, but it was time for the lumbar puncture, under general anesthesia.
The steroids are making her HUNGRY, so fasting until then made her a tad bit moody and unhappy. She went through 2 bags of cheetos, a bag of sun chips, grape juice, orange soda, and at least 5 cheeses.
Her heart rate was pretty rapid, particularly elevated for her last week, so we waited a couple hours on fluid before they were satisfied and sent her home.
Lizzy had meanwhile gotten home, gone to a neighbor, and gotten her homework done. That wasn't the plan; but it worked out. I am so grateful for excellent friends and neighbors. So that was our first clinic day.
I thought we were getting into a groove and kind of had this, and today proved that I have nothing at all under control.
Tuesday, October 1, 2013
Taking Prescriptions
While in the hospital, Emma got pretty good with an oral syringe. They
don't always work so well, though, because the ones that are long enough
to reach the medicine in the bottom of a bottle are mostly too thick to
get through the opening.
So we use the medicine spoon.
There is a twice-daily steroid that is particularly nasty. In the hospital they finally switched to the liquid form and mixed it with a large quantity of dragons potion flavoring. Insurance companies prefer to pay for the pill, though.
It is yucky.
So, take some magic shell ice cream topping and coat the pill. Stick it in the freezer. Then after a few days you can teach a 4 year old to just swallow it rather than sucking the chocolate off.
With all medications, a glass of chocolate milk makes a decent chaser. Also, Grandma got her a trophy and some gems. She can stick a gem to the trophy every time she does something heroic, like take nasty medicine or get blood drawn.
So we use the medicine spoon.
There is a twice-daily steroid that is particularly nasty. In the hospital they finally switched to the liquid form and mixed it with a large quantity of dragons potion flavoring. Insurance companies prefer to pay for the pill, though.
It is yucky.
So, take some magic shell ice cream topping and coat the pill. Stick it in the freezer. Then after a few days you can teach a 4 year old to just swallow it rather than sucking the chocolate off.
With all medications, a glass of chocolate milk makes a decent chaser. Also, Grandma got her a trophy and some gems. She can stick a gem to the trophy every time she does something heroic, like take nasty medicine or get blood drawn.
Emma's Pediatrician
Got a call this morning from our pediatrician. She was just saying welcome home. And asking how we are doing and what's next.
I like her.
I like her.
Monday, September 30, 2013
Doctors
I want to tell a bit about the terrific doctors we have. When we checked
in, the weekend Oncologist came in wearing shorts and a t-shirt. He
introduced himself as Luke, and began by talking to Emma. He asked about
her family, about what she likes to do, her favorite things. Then he
examined her. Then he talked with us.
Luke was the Fellow and Alli was the Resident over the weekend. Monday came and we met Dr. Bruggers, the attending Oncologist, and Doug, who will be our Fellow for the next few years.
30 minutes after we got the diagnosis for sure, and when Doug won the coin toss or whatever decision gave us our Fellow, Luke came to our room. He said to us that he was sorry, reassured us that this was the best place we could be, and knelt down by Emma's bed and played ponies and polly pockets with her for 25 minutes. Then left.
Alli is beginning her Residency, and she leads the discussion during rounds. Each morning, Alli, Doug, Dr Bruggers, and 7 other people meet up, plus our nurses and the parents, and they discuss her case. They go over her latest labs, what she's eaten, her medications, her vitals, how much she has peed, what procedures she has had and which are scheduled. 14 people standing around with clipboards, focused on my 4-year old. Humbling.
Later, Doug comes with either Dr. Bruggers or Alli to answer any of our questions. Doug has finished his residency and is into his Fellowship, so he is officially Emma's doctor. He works with an attending doc, who we will meet, and who is his official mentor. During our hospital stay, though, our attending doc was Dr. Bruggers. See the hierarchy? Wow.
Alli, the Resident, is pretty competent; but she is just beginning to specialize in pediatric oncology. She checks everything and mentions everything. We ask her all kinds of questions and she tells us what she is looking at.
Doug and Luke are Fellows. They are smart guys and they know a lot. They can answer most any question we throw at them. Luke is a great big kid. Doug doesn't wear socks and has hair like Flynn Rider... long on top that he frequently pushes back. They both discuss all kinds of details and tell us what things they are looking at.
Dr. Bruggers has been in Pediatric Oncology for a long, long time. Nothing surprises her, and most everything that caught Alli's attention, or Doug's or Luke's, Dr. Bruggers would explain why it was happening and why it was not a concern or how they would handle it. She seems to have supreme confidence, and is constantly teaching the others and the parents. She isn't cocky-confident; but she is experienced-confident.
The team is in regular conference with a heap of children's oncologists around the world, sharing new ideas, conferring on questions, and collectively trying to improve the success rates for the kiddos that they work with.
Luke was the Fellow and Alli was the Resident over the weekend. Monday came and we met Dr. Bruggers, the attending Oncologist, and Doug, who will be our Fellow for the next few years.
30 minutes after we got the diagnosis for sure, and when Doug won the coin toss or whatever decision gave us our Fellow, Luke came to our room. He said to us that he was sorry, reassured us that this was the best place we could be, and knelt down by Emma's bed and played ponies and polly pockets with her for 25 minutes. Then left.
Alli is beginning her Residency, and she leads the discussion during rounds. Each morning, Alli, Doug, Dr Bruggers, and 7 other people meet up, plus our nurses and the parents, and they discuss her case. They go over her latest labs, what she's eaten, her medications, her vitals, how much she has peed, what procedures she has had and which are scheduled. 14 people standing around with clipboards, focused on my 4-year old. Humbling.
Later, Doug comes with either Dr. Bruggers or Alli to answer any of our questions. Doug has finished his residency and is into his Fellowship, so he is officially Emma's doctor. He works with an attending doc, who we will meet, and who is his official mentor. During our hospital stay, though, our attending doc was Dr. Bruggers. See the hierarchy? Wow.
Alli, the Resident, is pretty competent; but she is just beginning to specialize in pediatric oncology. She checks everything and mentions everything. We ask her all kinds of questions and she tells us what she is looking at.
Doug and Luke are Fellows. They are smart guys and they know a lot. They can answer most any question we throw at them. Luke is a great big kid. Doug doesn't wear socks and has hair like Flynn Rider... long on top that he frequently pushes back. They both discuss all kinds of details and tell us what things they are looking at.
Dr. Bruggers has been in Pediatric Oncology for a long, long time. Nothing surprises her, and most everything that caught Alli's attention, or Doug's or Luke's, Dr. Bruggers would explain why it was happening and why it was not a concern or how they would handle it. She seems to have supreme confidence, and is constantly teaching the others and the parents. She isn't cocky-confident; but she is experienced-confident.
The team is in regular conference with a heap of children's oncologists around the world, sharing new ideas, conferring on questions, and collectively trying to improve the success rates for the kiddos that they work with.
She Eats
Emma didn't eat a lot in the hospital. Like really not a lot. A few
strawberries, half a chocolate milk, and a nibbling bite of PBJ provided
it was cut in squares and not triangles. That's it for a day.
She is taking a steroid, day 6 now, that is likely to make her super hungry all the time. Also it may make her grumpy grumpy.
We started seeing the grumpy in the hospital; but no appetite.
This morning she's had a few glasses of milk with her two cheese sandwiches. While that isn't teenage boy appetite, it's fabulous to have her voluntarily eating.
There is a bit more energy in her this morning. Of course as a rule, good days interweave with rough ones. We'll probably use up a good amount of that energy in a trip to the lab for a blood draw this morning.
She is taking a steroid, day 6 now, that is likely to make her super hungry all the time. Also it may make her grumpy grumpy.
We started seeing the grumpy in the hospital; but no appetite.
This morning she's had a few glasses of milk with her two cheese sandwiches. While that isn't teenage boy appetite, it's fabulous to have her voluntarily eating.
There is a bit more energy in her this morning. Of course as a rule, good days interweave with rough ones. We'll probably use up a good amount of that energy in a trip to the lab for a blood draw this morning.
Sunday, September 29, 2013
Regarding Choices
Memo to me:
Next time I am discussing seven separate pediatric cancer prescriptions with a nurse on discharge day, and he offers me the option of having them filled by the hospital pharmacist and brought to my room, I should really consider it.
I am really cost conscious, so I never go to the hospital pharmacist, understanding them to range on the pricier side for the same stuff.
Convenience, friends, might be worth something. Especially under the following circumstances:
Actually, upon looking at this list, I think I will print and bring to the PCMC inpatient pharmacist that I talked with about my prescriptions. He didn't recommend one way or the other. Maybe he doesn't want to pressure me into buying from the onsite pharmacy, or maybe he just hasn't considered it this way.
Next time I am discussing seven separate pediatric cancer prescriptions with a nurse on discharge day, and he offers me the option of having them filled by the hospital pharmacist and brought to my room, I should really consider it.
I am really cost conscious, so I never go to the hospital pharmacist, understanding them to range on the pricier side for the same stuff.
Convenience, friends, might be worth something. Especially under the following circumstances:
- When you've met your deductible and the prescriptions are part of what's 100% covered for the rest of the year. Zero copay on $350 or zero copay on $370 isn't actually a difference.
- The pharmacist is not 1 more stop, but 2 more stops because 7 prescriptions aren't a 5-minute process.
- Even if stores are open 24 hours, there are only a few 24-hour-pharmacist locations, and so the lines are long on Saturday evening.
- Your kid was just discharged, is tired, and needs one of those prescriptions tonight.
- Whether or not you know it, pediatric forms of this stuff might take time to compound or not be regular stock. The pharmacist may call the doctor and ask for a variation, and the doctor might not call right back. Then it's 3 stops and some phone calls and waiting.
- Sick people come to the pharmacy for prescriptions, and I have an immunocompromised child at home.
Actually, upon looking at this list, I think I will print and bring to the PCMC inpatient pharmacist that I talked with about my prescriptions. He didn't recommend one way or the other. Maybe he doesn't want to pressure me into buying from the onsite pharmacy, or maybe he just hasn't considered it this way.
Caleb's Bottles
Last Sunday, Jen took my 3 kids with her family of 8 to church. We had
just gone to the hospital the previous night. Before the service began,
some people asked who her extras were, and she explained about Emma.
Lots of offers for help, outpoouring of love and concern. One gal,
Becca, runs a daycare.
Becca: "What do you need?"
Jen: "I can't get the baby to take a bottle."
Becca: "I can help with that." Caleb is 7 months old and has rarely had opportunities to not want a bottle. I'm always back before long.
Becca came around 2:00 with a grocery bag of different bottles and a grocery bag of different formulas. She has the experienced eye that can tell whether Caleb hated each nipple, formula, or both. She had the patience to work through his furious angry fighting.
After several tries, they found the right combination of nipple and formula that he would eat, and she stuck around to make sure he drank it all. She held him and soothed him, played with him until he was happy, got him asleep.
She left around 7:00. She came back 5 minutes later with 2 more identical bottles and another can of the formula he had chosen. She was there 5 hours focused on my baby boy.
I have never met Becca. I am so glad that we get a front-row seat for a parade of kindness and generosity and greatness.
Becca: "What do you need?"
Jen: "I can't get the baby to take a bottle."
Becca: "I can help with that." Caleb is 7 months old and has rarely had opportunities to not want a bottle. I'm always back before long.
Becca came around 2:00 with a grocery bag of different bottles and a grocery bag of different formulas. She has the experienced eye that can tell whether Caleb hated each nipple, formula, or both. She had the patience to work through his furious angry fighting.
After several tries, they found the right combination of nipple and formula that he would eat, and she stuck around to make sure he drank it all. She held him and soothed him, played with him until he was happy, got him asleep.
She left around 7:00. She came back 5 minutes later with 2 more identical bottles and another can of the formula he had chosen. She was there 5 hours focused on my baby boy.
I have never met Becca. I am so glad that we get a front-row seat for a parade of kindness and generosity and greatness.
Saturday, September 28, 2013
Home
Emma is home.
Every other word is just words. There is a deep breath and a relieved sigh. Really, the best news in a week: Emma is home.
Every other word is just words. There is a deep breath and a relieved sigh. Really, the best news in a week: Emma is home.
What a Week
Last week we were rushing about trying to get ourselves fed and dressed
for two soccer games. We have been in this incredible children's
hospital for a week. Our lives are taking a different road than we
expected.
I shared on facebook last Saturday a meme that begins with a common sentiment, God will not give you something that you cannot handle.
It was funny and it kind of relieved a little stress; but I don't think that the concept is entirely true.
God does give some things that we can't handle yet, and helps the willing gain the ability to handle.
God does allow some things that we simply can't handle, and the only possible solution that is a win is to lean on him. To trust Him. To have faith.
I believe God wants to refine us, to polish us, and to make us into something better than what we are.
He wants us to tear our pride muscles a bit and grow some humility.
He loves us. Oh yes, He surely does.
He gives us things that we cannot handle, and then we choose whether to let Him make us into somebody who can handle that hard stuff.
I did not ask for this. I do not want this. But we are going forward in gratitude and faith. We are going to come through a bit better, I hope.
What a difference a week can make.
I shared on facebook last Saturday a meme that begins with a common sentiment, God will not give you something that you cannot handle.
It was funny and it kind of relieved a little stress; but I don't think that the concept is entirely true.
God does give some things that we can't handle yet, and helps the willing gain the ability to handle.
God does allow some things that we simply can't handle, and the only possible solution that is a win is to lean on him. To trust Him. To have faith.
I believe God wants to refine us, to polish us, and to make us into something better than what we are.
He wants us to tear our pride muscles a bit and grow some humility.
He loves us. Oh yes, He surely does.
He gives us things that we cannot handle, and then we choose whether to let Him make us into somebody who can handle that hard stuff.
I did not ask for this. I do not want this. But we are going forward in gratitude and faith. We are going to come through a bit better, I hope.
What a difference a week can make.
Day 3
After a transfusion on Wednesday, Emma's heart rate dropped like a rock
and it has been steady in the fifties for a couple days. The theory? Her
heart has been working so hard long enough on anemic blood that now,
with all those red blood cells bringing all that oxygen, her heart is
totally coasting. probably will even up after a few days.
No fevers again for the second day. That is pretty awesome.
She is still pretty seriously low on immunity, but the doc let her go for a walk after visiting hours tonight, provided she wears a mask. Yes, the photo shows two masks: she likes Mickey better; but the green one is the required level of filtration.
She is cleared to go home tomorrow after her next dose of chemo, provided she responds well to that. Cross your fingers and hip hip hooray!
No fevers again for the second day. That is pretty awesome.
She is still pretty seriously low on immunity, but the doc let her go for a walk after visiting hours tonight, provided she wears a mask. Yes, the photo shows two masks: she likes Mickey better; but the green one is the required level of filtration.
She is cleared to go home tomorrow after her next dose of chemo, provided she responds well to that. Cross your fingers and hip hip hooray!
Friday, September 27, 2013
C is for Crown
Thursday, September 26, 2013
Feeding Jen's Bigger Family
Two related stories:
We got here Saturday evening, and Jen took our other 3 kids to church with her family on Sunday. Jen and Jeremy have 6 kids. Jen's ward [congregation] totally supported and loved our kiddos that day.
My Aunt called Jen and said since she couldn't do anything for us, she'd bring Sunday dinner to Jen. "But that's 11 people, Sybil"
"No," said Sybil, "The baby won't have any."
So Sybil brought my cousin's wife and daughter, fed my family and Jen's family, and then brought dinner to us in the hospital. The generosity from the Sybil, Daryl, Chad Heather, Maura crowd gave us huge generosity and support right there.
Then Jen's friend, Sue, told Jen not to make dinner on Monday. She and her husband mad a big 'ole kettle of crock pot goodness to feed the family that was feeding my family.
There you go, two stories I wanted to tell. Combined. We are seeing kindness and love from people we have never met. We are so grateful for a network of friends that reaches out into goodness.
We got here Saturday evening, and Jen took our other 3 kids to church with her family on Sunday. Jen and Jeremy have 6 kids. Jen's ward [congregation] totally supported and loved our kiddos that day.
My Aunt called Jen and said since she couldn't do anything for us, she'd bring Sunday dinner to Jen. "But that's 11 people, Sybil"
"No," said Sybil, "The baby won't have any."
So Sybil brought my cousin's wife and daughter, fed my family and Jen's family, and then brought dinner to us in the hospital. The generosity from the Sybil, Daryl, Chad Heather, Maura crowd gave us huge generosity and support right there.
Then Jen's friend, Sue, told Jen not to make dinner on Monday. She and her husband mad a big 'ole kettle of crock pot goodness to feed the family that was feeding my family.
There you go, two stories I wanted to tell. Combined. We are seeing kindness and love from people we have never met. We are so grateful for a network of friends that reaches out into goodness.
Emma's Team
We have started to refer to our support, in my head at least, as Emma's
team. Cousins, Aunts, Neighbors, Uncles, Grandparents, and friends.
Emma's team includes people that she has never even met her, but that
are praying for her and for us.
Before this, Emma had a smaller team of 8 small people and their coach.
Emma's soccer team left her some love notes and a bouquet of candy.
Before this, Emma had a smaller team of 8 small people and their coach.
Emma's soccer team left her some love notes and a bouquet of candy.
How Did They Know
A couple people have asked how we knew to come to Primary Children's.
The pediatrician at the Kids Care on Saturday. I'll try to get my
muddled brain to tell the events.
After examining Emma, she told me she wanted a blood test. I was alarmed and asked why; I thought maybe an x-ray would happen looking for hairline fractures. She said she was concerned about the bruises and the bone pain. This is the first I heard of bone pain; but it made sense because of what Emma had been saying.
I didn't jump to leukemia, but when I asked why a blood test, the doc said, "well, we want to rule out leukemia right away." And I was all "Oh yeah, rule that out right now. Blood test here we come."
We went over to the lab in the hospital, drew blood. I remember she ordered a CBC and a CBC diff. Didn't know what they were at the time; but we're getting those pretty regular now.
They came back suspicious and the doctor came in and asked where my husband was, and said it looked suspicious for Leukemia. Luckily at that moment Caleb, who had joined Emma and I at the instacare, got bored and a bit fussy, so I couldn't exactly melt. The doctor invited me to call Clinton and we would talk about what to do next. She said she hoped she was wrong and it could be something else.
Clinton and I were a bit panicked and finally figured out that the quickest way to get it going was for him to get the kids ready and into the car, and I would figure out where he was dropping them. My sister Jen lives 2 miles from my house and 2 miles from the hospital. Hard as it was to tell Clinton to get to the instacare, it was hard to have to say "Leukemia maybe" yet again. Luckily, my #1 go-to babysitter Anna was home at Jen's and Clinton was at Kids Care with me pretty quick.
They told us that the weekend might hold up some things, and since we didn't look critical, we could wait until Monday if we wanted.
Would you wait?
The weekend pediatrician was fabulous. She explained why she suspected Leukemia, but that she could not absolutely diagnose without the tests. She outlined what tests they might run and what we might expect for the next couple of days. She also reiterated that she didn't know what we had, that it might be something else, but that we should really take leukemia symptoms seriously.
After gathering a few things from home and getting a quick shower, we were directly admitted to Primary Childrens Hospital.
And That's why we came to Primary Children's with suspicions of Leukemia.
After examining Emma, she told me she wanted a blood test. I was alarmed and asked why; I thought maybe an x-ray would happen looking for hairline fractures. She said she was concerned about the bruises and the bone pain. This is the first I heard of bone pain; but it made sense because of what Emma had been saying.
I didn't jump to leukemia, but when I asked why a blood test, the doc said, "well, we want to rule out leukemia right away." And I was all "Oh yeah, rule that out right now. Blood test here we come."
We went over to the lab in the hospital, drew blood. I remember she ordered a CBC and a CBC diff. Didn't know what they were at the time; but we're getting those pretty regular now.
They came back suspicious and the doctor came in and asked where my husband was, and said it looked suspicious for Leukemia. Luckily at that moment Caleb, who had joined Emma and I at the instacare, got bored and a bit fussy, so I couldn't exactly melt. The doctor invited me to call Clinton and we would talk about what to do next. She said she hoped she was wrong and it could be something else.
Clinton and I were a bit panicked and finally figured out that the quickest way to get it going was for him to get the kids ready and into the car, and I would figure out where he was dropping them. My sister Jen lives 2 miles from my house and 2 miles from the hospital. Hard as it was to tell Clinton to get to the instacare, it was hard to have to say "Leukemia maybe" yet again. Luckily, my #1 go-to babysitter Anna was home at Jen's and Clinton was at Kids Care with me pretty quick.
They told us that the weekend might hold up some things, and since we didn't look critical, we could wait until Monday if we wanted.
Would you wait?
The weekend pediatrician was fabulous. She explained why she suspected Leukemia, but that she could not absolutely diagnose without the tests. She outlined what tests they might run and what we might expect for the next couple of days. She also reiterated that she didn't know what we had, that it might be something else, but that we should really take leukemia symptoms seriously.
After gathering a few things from home and getting a quick shower, we were directly admitted to Primary Childrens Hospital.
And That's why we came to Primary Children's with suspicions of Leukemia.
Shout Out to the Laundry Guys
My brother, David, is a maintenance mechanic at Intermountain Healthcare
Central Laundry. Once I got a tour of the laundry and David, or Tech as
his coveralls say, showed me the machines that do thousands of pounds
of laundry an hour. (Sh David, I'm telling the story) Tech tells me that
his big rig machines can get your laundry so clean and they handle the
craziest, grossest stuff. Emma gets sterile clean stain-free sheets and
blankets refreshed every day. Thanks Tech!
We are learning how to take care of her. The chemo drugs are pretty harsh, enough so that if I am handling any biological products (puke, pee, and other stuff that parents just deal with) from her I need to use double-ply nitrile gloves, and that any laundry we wash with her body fluids on it gets two washes in a domestic washer.
To clarify, we don't have to use gloves to touch Emma; she isn't radioactive, nor is she a germ farm or a radioactive mass. Just that her byproducts have that toxic medication flowing freely. And the drugs are heavy-duty stuff.
Also, we learned that some of these medications might make her a little nauseated.
So... Hey David! Emma is sending some truly toxic stuff your way right now.
We are learning how to take care of her. The chemo drugs are pretty harsh, enough so that if I am handling any biological products (puke, pee, and other stuff that parents just deal with) from her I need to use double-ply nitrile gloves, and that any laundry we wash with her body fluids on it gets two washes in a domestic washer.
To clarify, we don't have to use gloves to touch Emma; she isn't radioactive, nor is she a germ farm or a radioactive mass. Just that her byproducts have that toxic medication flowing freely. And the drugs are heavy-duty stuff.
Also, we learned that some of these medications might make her a little nauseated.
So... Hey David! Emma is sending some truly toxic stuff your way right now.
Wednesday, September 25, 2013
If We Hadn't Gone In on Saturday...
Emma's legs and hips are pretty sore today. Blood cells are made in
bones, and some of the heavy producers are, as I understand it, long
bones and hips. That is, legs and hips. This is the pain that made her
limp and brought us to this place. Partly the increased discomfort is
because Day 1 Chemo is attacking the cancer where it is: in those sore
bones. And also, as I understand the theory, because it is the
progression of the symptoms of leukemia.
2 weeks ago she complained of pain. 10 days ago she was limping some. Last week she was stumping around and not wanting to walk. Saturday she had a serious limp. Today she want to be carried to the bathroom.
If we hadn't come in on Saturday, I think we would be here now. Just without the cool Life Flight tour.
True or not true, cannot be proven either way.
But the way I figure it, we'd be here.
2 weeks ago she complained of pain. 10 days ago she was limping some. Last week she was stumping around and not wanting to walk. Saturday she had a serious limp. Today she want to be carried to the bathroom.
If we hadn't come in on Saturday, I think we would be here now. Just without the cool Life Flight tour.
True or not true, cannot be proven either way.
But the way I figure it, we'd be here.
The New Normal
Earlier today, I wandered in to the laundry room, pulled some left over
pizza out of the fridge and stuck it in the toaster oven, pulled some
pajamas and one of Emma's blankets out of the dryer and brought them
back to her bedroom to fold and stick in a drawer, then went back in to
get the pizza and back past the nurses station to Emma's room.
Now, that string of events could happen any time in my house, except, of course, the nurses station.
I think the adrenaline is finally wearing off or running out. We are starting to look at reality and beginning to realize things that need to shift a little.
We have a few goals for this journey. When we get to the end of Leukemia, we want to be better individuals: Clinton, Me, Lizzy, Emma, Tommy, and Caleb. We want Clinton and I to be a better couple and closer as husband and wife. We want our family to be tighter knit and better as a family. We want each of our children to know how very important they are and their own value as people and as members of our family. Most important, we want to be, individually and collectively, closer to God. And we'd really like to beat Leukemia, too.
We're hoping to invent a new and improved normal.
Now, that string of events could happen any time in my house, except, of course, the nurses station.
I think the adrenaline is finally wearing off or running out. We are starting to look at reality and beginning to realize things that need to shift a little.
We have a few goals for this journey. When we get to the end of Leukemia, we want to be better individuals: Clinton, Me, Lizzy, Emma, Tommy, and Caleb. We want Clinton and I to be a better couple and closer as husband and wife. We want our family to be tighter knit and better as a family. We want each of our children to know how very important they are and their own value as people and as members of our family. Most important, we want to be, individually and collectively, closer to God. And we'd really like to beat Leukemia, too.
We're hoping to invent a new and improved normal.
Chemotherapy Day 1
So this is the official day 1.
Emma has had several extra things given by IV and mouth.
Steroids, anti-nausea, anti-cancer, fever reducer, and a bag of blood. Well, truly, the blood transfusion is still going on... that's a 2-hour thing. It's kind of interesting to see the end result of a blood drive.
I haven't given for a while, what with a 7-month old baby. But seeing the bag hanging there and providing her a very needed transfusion makes me want to drop by the red cross and give a pint.
Day 1.
The first segment of treatment is called induction, and runs 29 days. After they are happy with her reaction to the day 4 drugs, we get to take her home, and then much will be outpatient.
Our list of possible side effects would make a really cool speed-talking caveat on a drug commercial. "Ask your doctor if Chemotherapy is right for you..."
Emma has had several extra things given by IV and mouth.
Steroids, anti-nausea, anti-cancer, fever reducer, and a bag of blood. Well, truly, the blood transfusion is still going on... that's a 2-hour thing. It's kind of interesting to see the end result of a blood drive.
I haven't given for a while, what with a 7-month old baby. But seeing the bag hanging there and providing her a very needed transfusion makes me want to drop by the red cross and give a pint.
Day 1.
The first segment of treatment is called induction, and runs 29 days. After they are happy with her reaction to the day 4 drugs, we get to take her home, and then much will be outpatient.
Our list of possible side effects would make a really cool speed-talking caveat on a drug commercial. "Ask your doctor if Chemotherapy is right for you..."
Emma's Pediatrician
Since we headed for Kids Care (pediatric instacare) on a Saturday,
Emma's regular pediatrician didn't find out until Monday. After regular
office hours... probably about 6:30 or so, our Pediatrician's face
appeared in the door. She was here in normal people clothes, without
stethoscope, and wearing a visitor badge and not a doctor badge. She
isn't part of our oncology team; but she wanted to know how her girl is
doing. She talked with us and with Emma. Reassured us about what a great
place we are in. She did her residency in this unit.
She brought Emma a present. Something little and unique and cool, and clearly not something out of the office sticker box.
And she called again today just to check on us.
We got a good one here.
She brought Emma a present. Something little and unique and cool, and clearly not something out of the office sticker box.
And she called again today just to check on us.
We got a good one here.
Life Flight
Saturday night we finished up with the chest x-ray and
got on the elevator. Emma was looking cute in her mask and jammies. A
super nice guy got on the elevator with us and then suggested we go to
the roof with him and flashed his badge for the unlabeled roof button.
He walked us out to the life flight helicopter, showed us around, and
let us ask questions.
Our nurse was so stoked to be Emma's entourage for the night and several other of our nurses and doctors are a touch jealous. Very few get to check out the helicopter without a life threatening emergency. It was pretty cool.
We love how so many go out of their way to do nice things for the kids there. A mask is kind of like a backstage pass there.
Our nurse was so stoked to be Emma's entourage for the night and several other of our nurses and doctors are a touch jealous. Very few get to check out the helicopter without a life threatening emergency. It was pretty cool.
We love how so many go out of their way to do nice things for the kids there. A mask is kind of like a backstage pass there.
USB Port, Lumbar, Support
First off, we love love love the love notes that are pouring in. That is very sustaining and strengthening stuff.
Yesterday Lizzy visited, today Tommy came up for a bit. He was not really comfortable with all of it; but he did like the buttons that adjust the hospital bed.
Emma had an echocardiogram today to provide a baseline measure of her heart. Later she got her IV port, which is truly like a USB. medicine in, blood out. Whatever is needed, cross platform.
While she was under, they did a lumbar puncture to get spinal fluid for testing and they also gave Emma her very first dose of chemotherapy.
Officially, tomorrow is day 1.
Clinton and I are trading nights at the hospital. Tonight at about 10:15 I arrived home. The mail was in, the front door repaired, my dishes washed, my kitchen cleaned, the trash out, toys cleaned up in the family room.
We aren't strong enough to handle this on our own. We are so grateful that we don't have to.
Tomorrow starts the official Day 1 of treatment.
Yesterday Lizzy visited, today Tommy came up for a bit. He was not really comfortable with all of it; but he did like the buttons that adjust the hospital bed.
Emma had an echocardiogram today to provide a baseline measure of her heart. Later she got her IV port, which is truly like a USB. medicine in, blood out. Whatever is needed, cross platform.
While she was under, they did a lumbar puncture to get spinal fluid for testing and they also gave Emma her very first dose of chemotherapy.
Officially, tomorrow is day 1.
Clinton and I are trading nights at the hospital. Tonight at about 10:15 I arrived home. The mail was in, the front door repaired, my dishes washed, my kitchen cleaned, the trash out, toys cleaned up in the family room.
We aren't strong enough to handle this on our own. We are so grateful that we don't have to.
Tomorrow starts the official Day 1 of treatment.
Tuesday, September 24, 2013
The list
I wasn't sleeping after about 4:30. I woke up to go to the bathroom, and
exhaustion has lost it's bite, so I couldn't get back to sleep. My
brain is whirring about what we've learned and what we don't know, texts
and emails I haven't returned, things Clinton should bring to the
hospital when he wakes up, worries for our other children, both dealing
with the new changes and stress, and also the things that concerned me
Saturday morning before all this exploded. I've been also thinking of
all the amazing and incredible things that we have experienced since
Saturday. We have seen such love and support and generosity. We are so
grateful for the people who have helped to make this a bit bearable.
Some of the things I hope I can write about while I still remember them and before they get blurred together:
Life Flight (don't worry, it's good)
The start of the story
Emma's pediatrician
Jen's ward
Caleb's bottle
Sybil
Luke playing with Emma
Elliot
The Mass of Doctors
The false negative and the diagnosis wait
Xbox
Blankets
Church on Sunday
Friends of Scouting
My connection with the foundation
Dinner from Maryland
Music
The Call button
The re-key
Lizzy Tommy and Caleb
There are other things. Some things are a little more private. We have a few stories, though, since coming here.
We are so thankful for the love that is surrounding us and filling us.
Emma is doing pretty well. There have been a few things that aren't great here; but there have been some great times. But there is also a fair amount of Emma sitting either in her bed or on the couch with a pile of little toys, about half Polly Pocket Princess parts and playing with them happily. The nail polish bottles have been married a few times and the crayons have been sorted, filed, lined up, and re-boxed. Her trove of toys has been sorted into hers and the hospital's a few times. If you've watched Emma play, then you'll know that this is all very Emma. And encouraging, or at the very least positive.
She has drifted back to sleep after a tough blood draw. She had to have a new IV placed last night and it was pretty rough. Then she fell asleep barely consoled. So to be up for more poking at 5:30 left her a little perplexed. Later today she will get an IV port which will reduce the pokes. But she'll also get her first bit of chemotherapy, so I think for the foreseeable future there may be a few clouds among our silver linings.
Thank you all for your love and support.
Here is the first badly taken backlit picture from Saturday
Some of the things I hope I can write about while I still remember them and before they get blurred together:
Life Flight (don't worry, it's good)
The start of the story
Emma's pediatrician
Jen's ward
Caleb's bottle
Sybil
Luke playing with Emma
Elliot
The Mass of Doctors
The false negative and the diagnosis wait
Xbox
Blankets
Church on Sunday
Friends of Scouting
My connection with the foundation
Dinner from Maryland
Music
The Call button
The re-key
Lizzy Tommy and Caleb
There are other things. Some things are a little more private. We have a few stories, though, since coming here.
We are so thankful for the love that is surrounding us and filling us.
Emma is doing pretty well. There have been a few things that aren't great here; but there have been some great times. But there is also a fair amount of Emma sitting either in her bed or on the couch with a pile of little toys, about half Polly Pocket Princess parts and playing with them happily. The nail polish bottles have been married a few times and the crayons have been sorted, filed, lined up, and re-boxed. Her trove of toys has been sorted into hers and the hospital's a few times. If you've watched Emma play, then you'll know that this is all very Emma. And encouraging, or at the very least positive.
She has drifted back to sleep after a tough blood draw. She had to have a new IV placed last night and it was pretty rough. Then she fell asleep barely consoled. So to be up for more poking at 5:30 left her a little perplexed. Later today she will get an IV port which will reduce the pokes. But she'll also get her first bit of chemotherapy, so I think for the foreseeable future there may be a few clouds among our silver linings.
Thank you all for your love and support.
Here is the first badly taken backlit picture from Saturday
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