Delayed Intensification started out much harder than the interim maintenance, and Emma was tired and moped about with flushed cheeks.
Monday Emma went in to clinic for her PEG Asperiginase I.V. chemotherapy. As we sat waiting for the pharmacy to fill the order, Emma's face got redder and she looked miserable. Dr. Afify thought she looked a little bit like the reaction to PEG though she hadn't yet had the I.V. and we were sent home to see if she was thinking of having a fever.
Tuesday we arrived and she looked stable, so she got her PEG. She had every part of a fever except the temperature. She did well, though, and we got home for late lunch. My sister Sarah was angelic enough to watch the boys for two consecutive days' appointments.
Tuesday afternoon I was at my wits end and needed to take Lizzy to the doctor for her follow-up, and she and I were not in a happy place. My sister drove up just as I was loading the kids in the car, and she took the three littles home. Thanks Jen.
One of the many possible side effects for PEG is blood clots. I got a little paranoid on Wednesday about a dark vein that I hadn't noticed before, particularly after Emma said it hurt. She said that it made her not want to walk. I called clinic and they said they better take a look, so we went in to the clinic again Wednesday. Thanks to my neighbor, Emalee, for watching the boys while I panicked.
Luckily, I was paranoid and Emma was fine. No evidence of blood clots.
Wednesday, January 29, 2014
Sunday, January 26, 2014
Delayed Intensification
Yesterday Emma began delayed intensification. After a couple months of low-dosed chemo and a chance for her body to recover a bit, it is time for intensification, the root of that word being "intense."
Doxorubicin is a tough drug, added to the intrathecal methotrexate and the I.V. vincristine on Friday. Additionally, a return of the steroid, Dexamethasone, which makes her ornery and hungry.
 |
| Emma dressed for an OR procedure |
Dox is intended to pretty much crash all her blood counts. We anticipate that she will likely need a transfusion within the next week. Monday we will go in for a dose of PEG Asperiginase, as well.
We had her Lumbar Puncture in the OR instead of the rapid treatment unit (RTU) on Friday. I think the OR tends to run more heavy-handed on the anesthesia than the RTU. It took her more time to wake up, and she didn't want to drink for a while and was more grumpy and groggy. Usually we can get out in 3 1/2 hours if there is a back poke in RTU. Friday we arrived at 9:00 and didn't leave the hospital until just after 4:00.
I had kind of forgotten how rough chemo can be. Today, Saturday, was harder for Emma. Our whole family drove an hour to help my brother move into his new house. Emma and the younger brothers had to hang out with Grammy and read stories and maybe enjoy some chocolate milk and donuts.
This was so much for Emma. The ride down she slept. Hanging out with Grammy and also playing with cousins was tiring to the point of exhausting. We wrapped it up and headed for home when Emma disolved over a shortage of sprinkled donuts. That sort of thing might cause a meltdown in other kids, but rarely Emma.
 |
| The chemo look on Saturday evening |
We got home and she gravitated to the couch. She had a long nap, a movie, and wanted to go to bed at 7:00. Thus begins delayed intensification.
Thursday, January 16, 2014
Marriage, Relationships, Stress
On September 24th, Emma went in to surgery to have her port placed and to get a lumbar puncture, her first dose of intrathecal methotrexate and the first look at her cerebral spinal fluid. The diagnosis was not a day old, though she had been in the hospital three days.
We were pretty sure our other children were fine; but we had passed them off entirely to family. Clinton's boss and coworkers were supportive; but he had projects that he was simply ignoring.
We sat in the surgery waiting room, the first "break" since it all began. I saw a chance to talk and process -- and I needed to talk. The woman need... the biological Must... to talk and process and vent. Emotionally, we haven't actually bought shoes until we have gotten an opinion on them. Cancer wasn't real until I could talk it out. Maybe I'm being a touch dramatic with my description, but only a touch.
There I sat next to Clinton, ready to talk, and he was was playing Lego Star Wars on his iPad. I tried a couple conversation openers; but he barely responded with some short, non-conversational reply that conveyed the stereotypical, monosyllabic, manly grunt.
Trying to be respectful of his need to use the Force and to play with virtual knobbly bricks, I checked facebook and started to set up a blog. We have always been a team, so I needed his blessing to go forward with publishing updates about Emma to the world wide web. His reply: We need to talk about it.
YAY! He wants to talk!
But he didn't want to talk, as it turns out. He wanted to fight squared-off Storm Troopers. He wanted an indefinite waiting period before sharing all our troubles and personal details on the proverbial six o'clock news.
Steam and flames were beginning to leak from my stifled feminine psyche. A Wall was going up around his heckled, henpecked, male psyche.
I went to get a drink, and tried to understand why he was being so... so...
And in that moment, I saw Clinton trying to protect Emma. I saw him not just playing games; but trying to grapple with the awful reality that he hadn't yet been allowed to internalize. He needed to shut down and process. He was trying to get some control and was certainly not ready to issue a statement. He just needed some space.
In that moment, I saw him differently. I got my drink and tried a new conversation opener:
"You need to play a game right now, to deal with all this."
"Yes."
"You need some space to internalize, and you need some down time."
"Yes."
"That's how you deal with stress."
"Uh-huh."
"That's not how I deal with stress."
He paused his game and looked at me. "I'm sorry, Honey. What do you need?"
We discussed WHY I needed an outlet. How many texts and emails and phone calls I had not returned, how I process, and that I needed to talk or type or run or DO something. I outlined what I thought were his objections to a blog, and asked what else. He explained his concerns. We discussed what precautions would make it nearly ok for him.
And then, right there in the surgery waiting room, we hashed out our personality and character differences and our emotional needs. We listened. We talked. We took turns.
Then, he gave me his bluetooth keyboard and returned to fighting the Dark Side, and I started a caringbridge page that is now this blog.
That awful stressful day in the hospital while our daughter was getting a port placed for 3 years of blood draws and chemotherapy, our marriage took a huge step forward. I learned to step into his shoes and try to see how he thinks. He learned to step into my shoes and try to see how I think. We saw our differences and found a way to serve both our needs. We both compromised a bit; but it was easier once we saw each other.
We have had a few of these since - moments when we stop worrying about "what we want" and look at the basic need - the WHY.
Within a few hours, we had adopted our four goals.
Those are at the core of most any decision we make lately. We are getting better at being a team.
I don't know where the stats come from; but I hear that 80% of parents of pediatric cancer patients divorce. 2/3 of parents of children with ADD divorce. Premature kids, twins and triplets, autistic kids, kids with disabilities, all seem to have higher rates of divorced parents.
In the stress of the moment, a selfish comment or a misplaced accusation can plant the seed of resentment, can lead to a grudge. Then when the stress continues chronically for months and you don't make an opportunity to stop and evaluate the marriage, you get in the habit of not liking each other. You expect hostility and you start every encounter defensively.
I don't want to get in the middle of anybody's relationship; but sometimes I want to shout at people, "STOP and take a second to SEE your spouse!" He probably isn't a childish jerk, and she probably isn't a nagging ___. Under stress, we all tend to be our not-best selves.
Take a drink and try to understand why. Pause your iPad, and look up. Forgive, ask, understand, give the benefit. Figure out a way that you can both get what you need. Figure out a way that you can both empower your spouse.
Don't wait until the stress is past. Step back and see the whole picture. In an emergency get the bleeding stopped; but don't go to bed until you've made your marriage important.
Going it alone isn't going to help. Divorce won't solve anything. You need a buddy, you need a partner -- for your own emotional self, but also logistically and financially. Somebody has to carry insurance and make the house payment and keep a job going. Somebody has to go to doctor appointments, manage prescriptions, clean up puke, and stay with a kid that can't go to school or day care or whatever. Somebody needs to give you a break to go scream, vent, play games, go to the gym, or otherwise decompress.
In stressful times, don't dog your spouse to your friends. Don't. Be each other's best cheerleader and best fan. Build up your buddy as much as you can, because you need your buddy to build you up. Defend and protect that marriage; because you need it more than you ever did before.
We were pretty sure our other children were fine; but we had passed them off entirely to family. Clinton's boss and coworkers were supportive; but he had projects that he was simply ignoring.
We sat in the surgery waiting room, the first "break" since it all began. I saw a chance to talk and process -- and I needed to talk. The woman need... the biological Must... to talk and process and vent. Emotionally, we haven't actually bought shoes until we have gotten an opinion on them. Cancer wasn't real until I could talk it out. Maybe I'm being a touch dramatic with my description, but only a touch.
There I sat next to Clinton, ready to talk, and he was was playing Lego Star Wars on his iPad. I tried a couple conversation openers; but he barely responded with some short, non-conversational reply that conveyed the stereotypical, monosyllabic, manly grunt.
Trying to be respectful of his need to use the Force and to play with virtual knobbly bricks, I checked facebook and started to set up a blog. We have always been a team, so I needed his blessing to go forward with publishing updates about Emma to the world wide web. His reply: We need to talk about it.
YAY! He wants to talk!
But he didn't want to talk, as it turns out. He wanted to fight squared-off Storm Troopers. He wanted an indefinite waiting period before sharing all our troubles and personal details on the proverbial six o'clock news.
Steam and flames were beginning to leak from my stifled feminine psyche. A Wall was going up around his heckled, henpecked, male psyche.
I went to get a drink, and tried to understand why he was being so... so...
And in that moment, I saw Clinton trying to protect Emma. I saw him not just playing games; but trying to grapple with the awful reality that he hadn't yet been allowed to internalize. He needed to shut down and process. He was trying to get some control and was certainly not ready to issue a statement. He just needed some space.
In that moment, I saw him differently. I got my drink and tried a new conversation opener:
"You need to play a game right now, to deal with all this."
"Yes."
"You need some space to internalize, and you need some down time."
"Yes."
"That's how you deal with stress."
"Uh-huh."
"That's not how I deal with stress."
He paused his game and looked at me. "I'm sorry, Honey. What do you need?"
We discussed WHY I needed an outlet. How many texts and emails and phone calls I had not returned, how I process, and that I needed to talk or type or run or DO something. I outlined what I thought were his objections to a blog, and asked what else. He explained his concerns. We discussed what precautions would make it nearly ok for him.
And then, right there in the surgery waiting room, we hashed out our personality and character differences and our emotional needs. We listened. We talked. We took turns.
Then, he gave me his bluetooth keyboard and returned to fighting the Dark Side, and I started a caringbridge page that is now this blog.
That awful stressful day in the hospital while our daughter was getting a port placed for 3 years of blood draws and chemotherapy, our marriage took a huge step forward. I learned to step into his shoes and try to see how he thinks. He learned to step into my shoes and try to see how I think. We saw our differences and found a way to serve both our needs. We both compromised a bit; but it was easier once we saw each other.
We have had a few of these since - moments when we stop worrying about "what we want" and look at the basic need - the WHY.
Within a few hours, we had adopted our four goals.
I don't know where the stats come from; but I hear that 80% of parents of pediatric cancer patients divorce. 2/3 of parents of children with ADD divorce. Premature kids, twins and triplets, autistic kids, kids with disabilities, all seem to have higher rates of divorced parents.
In the stress of the moment, a selfish comment or a misplaced accusation can plant the seed of resentment, can lead to a grudge. Then when the stress continues chronically for months and you don't make an opportunity to stop and evaluate the marriage, you get in the habit of not liking each other. You expect hostility and you start every encounter defensively.
I don't want to get in the middle of anybody's relationship; but sometimes I want to shout at people, "STOP and take a second to SEE your spouse!" He probably isn't a childish jerk, and she probably isn't a nagging ___. Under stress, we all tend to be our not-best selves.
Take a drink and try to understand why. Pause your iPad, and look up. Forgive, ask, understand, give the benefit. Figure out a way that you can both get what you need. Figure out a way that you can both empower your spouse.
Don't wait until the stress is past. Step back and see the whole picture. In an emergency get the bleeding stopped; but don't go to bed until you've made your marriage important.
Going it alone isn't going to help. Divorce won't solve anything. You need a buddy, you need a partner -- for your own emotional self, but also logistically and financially. Somebody has to carry insurance and make the house payment and keep a job going. Somebody has to go to doctor appointments, manage prescriptions, clean up puke, and stay with a kid that can't go to school or day care or whatever. Somebody needs to give you a break to go scream, vent, play games, go to the gym, or otherwise decompress.
In stressful times, don't dog your spouse to your friends. Don't. Be each other's best cheerleader and best fan. Build up your buddy as much as you can, because you need your buddy to build you up. Defend and protect that marriage; because you need it more than you ever did before.
Wednesday, January 15, 2014
Still Hair After All This Time
The last week we've started getting a lot of comments about this little girl's hair. Friday in Clinic, two different people said, "Hey, Wow! Emma, look at your hair. You've still got so much hair this far into cancer treatment. That's pretty great, right?"
When we were in patient, we got one nurse that we had during our diagnosis week. She was not the only one to be impressed that Emma is almost to delayed intensification and still has hair.
This grainy shot of the top of her head came from yesterday's "game" wherein the kids got the camera and took about 45 pictures of toys and of Caleb crawling. She's thinning out, but she still does have her hair.
We met a girl who lost hers at 3 weeks. We met a boy who lost his at 7 months. Next week we'll be 4 months... but I suspect we'll probably get to using Emma's fabulous hat collection with regularity before much more time passes.
We met a girl who lost hers at 3 weeks. We met a boy who lost his at 7 months. Next week we'll be 4 months... but I suspect we'll probably get to using Emma's fabulous hat collection with regularity before much more time passes.
Tuesday, January 14, 2014
Things to Pack
Hello Emma's team.
Some day you may need to pack a hospital bag really quickly. Some day somebody who is just starting on a cancer journey may happen across this page. Some day Emma or I might look back at this and catch a peek at our reality.
We keep a small wheeled suitcase packed. In fact, I need to go take out the laundry from our hospital stay and restock. We switch off, so the parent NOT sleeping in the hospital gets a shower at home. If you live further than we do, though, the caregiver would want a few more things. Also, I need to add some things (!) to our bag. Here are some things you might want in a hospital bag:
a few sets of pajamas for the patient - for popsicle dribbles, spilled juice, and a new day.
Pajamas for mom and dad - only one parent can sleep, but we take turns on multi-night stays
Changes of socks
Clean shirts for Mom and Dad
Changes of underwear for Emma
(!)Hair elastics - for Emma and for Mom. Comb/brush.
chap stick
Lotion
(!)Toothbrushes for Emma, mom, and dad
Emma's shampoo
Pack of blank thank-you cards
Pens, notepad
Extra thumb tacks for long hospital stays - for cards and pictures on the board
Power cables - (!)Wall plug AND cable to the phone AND tablets. All the pieces. (!)
Granola bars
Slippers
Ibuprofen for Mom/Dad in case your nights are long and your pillows... you know
Then, if you have time on the way out the door, grab some snacks. You'll gravitate toward sweet or salty junk food, and you can get all manner of snacks at the hospital for more than they are worth. Try to make yourself think of healthier options... nuts, string cheese, yogurt, and that sort of thing. Have snacks in the house that you can take in order to help keep costs down while at the hospital. Consider the Ronald McDonald room as well as the cafeteria when you need a meal.
I'll maybe add more to this as time passes. If I missed something, let me know. I'll add it.
Some day you may need to pack a hospital bag really quickly. Some day somebody who is just starting on a cancer journey may happen across this page. Some day Emma or I might look back at this and catch a peek at our reality.
We keep a small wheeled suitcase packed. In fact, I need to go take out the laundry from our hospital stay and restock. We switch off, so the parent NOT sleeping in the hospital gets a shower at home. If you live further than we do, though, the caregiver would want a few more things. Also, I need to add some things (!) to our bag. Here are some things you might want in a hospital bag:
a few sets of pajamas for the patient - for popsicle dribbles, spilled juice, and a new day.
Pajamas for mom and dad - only one parent can sleep, but we take turns on multi-night stays
Changes of socks
Clean shirts for Mom and Dad
Changes of underwear for Emma
(!)Hair elastics - for Emma and for Mom. Comb/brush.
chap stick
Lotion
(!)Toothbrushes for Emma, mom, and dad
Emma's shampoo
Pack of blank thank-you cards
Pens, notepad
Extra thumb tacks for long hospital stays - for cards and pictures on the board
Power cables - (!)Wall plug AND cable to the phone AND tablets. All the pieces. (!)
Granola bars
Slippers
Ibuprofen for Mom/Dad in case your nights are long and your pillows... you know
Then, if you have time on the way out the door, grab some snacks. You'll gravitate toward sweet or salty junk food, and you can get all manner of snacks at the hospital for more than they are worth. Try to make yourself think of healthier options... nuts, string cheese, yogurt, and that sort of thing. Have snacks in the house that you can take in order to help keep costs down while at the hospital. Consider the Ronald McDonald room as well as the cafeteria when you need a meal.
I'll maybe add more to this as time passes. If I missed something, let me know. I'll add it.
24 hours later
Emma was released from the hospital Monday morning at 10:30.
Her cultures and tests all came back negative. She didn't have a runny nose or cough or sore throat, so it didn't seem like whatever virus is going around. It took until about 11:00 Sunday night before the fever was completely gone. Monday morning she was a new girl with new energy. By 9:30 she was "skateboarding" on her I.V. pole and by 10:00 she was playing with the bed controls, raising and lowering and finding all the possible positions.
I took home a healthy kid. Why was she sick, though? Why did she have elevated white counts? Why did she have a spooky fever that didn't want to go away? What was this all about?
I don't know. The doctors don't know. I have a theory, though. I am not a doctor. I am not a nurse. I haven't had a biology class since sometime in the last century, and the last good biology teacher I had taught seventh grade. With that understanding, here is my theory.
Every body is different, which is why some people are allergic to dogs and some people need meds to function in society and some people get laryngitis every January and some people get leukemia. Each different body responds a bit differently. Some things work pretty much the same, so amoxicillin is used on almost everybody with a bacterial infection. Some things take a little guess work, like ADD medications, or like getting the right balance with blood pressure meds.
Emma is responding well to almost every drug and protocol they give her, so much so that Dr. Engle says she's reading a textbook and responding like it says she should. That isn't always the case. Most kids will have some different reactions to various things; and "normal" would be a collection of the most common responses to each and every drug, dose and protocol.
Emma's amazing body is a unique and marvelous thing, though, and it is responding individually. A fever and white blood cells on the march indicate that the body is fighting something. I think Emma is fighting the poisons in her chemotherapy rather than a virus or bacteria.
Unexplained fevers are not uncommon in cancer patients. That's my explanation of this one. True? Not true? I don't know.
I am happy to have her home and healthy, though.
Her cultures and tests all came back negative. She didn't have a runny nose or cough or sore throat, so it didn't seem like whatever virus is going around. It took until about 11:00 Sunday night before the fever was completely gone. Monday morning she was a new girl with new energy. By 9:30 she was "skateboarding" on her I.V. pole and by 10:00 she was playing with the bed controls, raising and lowering and finding all the possible positions.
I took home a healthy kid. Why was she sick, though? Why did she have elevated white counts? Why did she have a spooky fever that didn't want to go away? What was this all about?
I don't know. The doctors don't know. I have a theory, though. I am not a doctor. I am not a nurse. I haven't had a biology class since sometime in the last century, and the last good biology teacher I had taught seventh grade. With that understanding, here is my theory.
Every body is different, which is why some people are allergic to dogs and some people need meds to function in society and some people get laryngitis every January and some people get leukemia. Each different body responds a bit differently. Some things work pretty much the same, so amoxicillin is used on almost everybody with a bacterial infection. Some things take a little guess work, like ADD medications, or like getting the right balance with blood pressure meds.
Emma is responding well to almost every drug and protocol they give her, so much so that Dr. Engle says she's reading a textbook and responding like it says she should. That isn't always the case. Most kids will have some different reactions to various things; and "normal" would be a collection of the most common responses to each and every drug, dose and protocol.
Emma's amazing body is a unique and marvelous thing, though, and it is responding individually. A fever and white blood cells on the march indicate that the body is fighting something. I think Emma is fighting the poisons in her chemotherapy rather than a virus or bacteria.
Unexplained fevers are not uncommon in cancer patients. That's my explanation of this one. True? Not true? I don't know.
I am happy to have her home and healthy, though.
Sunday, January 12, 2014
You have to admit...
Emma woke up at 6:30 with a pretty hot fever, plus some constipation. She had 103.5 in her sleeping-on-the-pillow ear, which is spooky, and 102.8 in the other, which is spooky. Clinton took her to the emergency room.
Her white blood cells are up pretty high and her ANC is about half what it was Friday. They ran some virus tests. I'm not sure what else yet, because I'm home bathing kids and making breakfast and preparing a lesson that I'm teaching in church and helping Lizzy practice for a talk she's giving in primary.
They are admitting her so that they can monitor her. Maybe they are erring on the side of caution; but they think the white blood cell count is grounds for caution. I'm not sure how long she'll be in, whether a day or more; but I'm kind of anxious about it. I am so grateful that we live close to Primary Children's.
Her white blood cells are up pretty high and her ANC is about half what it was Friday. They ran some virus tests. I'm not sure what else yet, because I'm home bathing kids and making breakfast and preparing a lesson that I'm teaching in church and helping Lizzy practice for a talk she's giving in primary.
They are admitting her so that they can monitor her. Maybe they are erring on the side of caution; but they think the white blood cell count is grounds for caution. I'm not sure how long she'll be in, whether a day or more; but I'm kind of anxious about it. I am so grateful that we live close to Primary Children's.
Friday, January 10, 2014
Finishing Interim Maintenance 1
Emma had a clinic visit today to finish Interim Maintenance. I forgot the numbing cream until we were in our room, so it only had 15 minutes to work before Jessica used her mad ninja port access skills. Without sufficient numbing, it's a pinch and a push; but Emma handled it well.
Doug and Dr. Engle both explained the next phase: delayed intensification. Delayed intensification is has a first part that mimics induction and a second part that mimics consolidation.
For now, though, Emma got her last does of interim maintenance drugs: IV vincristine and IV methotrexate. Her labs were great and she looks good.
Doug and Dr. Engle both explained the next phase: delayed intensification. Delayed intensification is has a first part that mimics induction and a second part that mimics consolidation.
For now, though, Emma got her last does of interim maintenance drugs: IV vincristine and IV methotrexate. Her labs were great and she looks good.
Wednesday, January 8, 2014
Star Player this week
Emma's team is widespread and incredible. We have friends of several faiths, Christian and otherwise, praying for Emma still. We get cards and electronic love regularly, as well as phone calls and people asking about Emma and about our family. We really love all that.
Close by, we have lots of friends who have taken a turn to watch the kids during Emma's appointments. People have found lots of other ways to help lift the load.
My sister, Becky, lives in Oklahoma. She can't watch kids, bring a meal, or drop by. She felt like she wasn't helping enough, being able to only send cards and phone calls, so she took advantage of winter break and joined us for 6 days.
This week, Becky watched kids while I took a sick kid (not Emma) to the doctor. She made frozen dinners and stocked my freezer with chopped onions, peppers, carrots, and ham to ease cooking so I'll actually cook more. She and my sister Sarah disinfected every surface in my kitchen, hallway, and bathroom. She deep-cleaned and un-stained the kitchen sink. She folded laundry, braided hair, and vacuumed the entire house including the stairs, corners, and crevices. She sorted through the baby's clothes and pulled out the things he has outgrown. She organized, cleaned, chopped, and prepped like crazy.
She sent Clinton and I to the temple - an opportunity to pray and meditate together. She sent us out on a date. She played games with the kids and also with Clinton and I. We talked and cleaned and cooked. She was a magnet for my mom and other two sisters to come, as well, and they also joined in to help me out and catch me up on things that have simply slipped.
Her visit coincided with my family's annual reunion, too, which was so much fun. Again, we took Emma and partied like it was the last one. My brother reserved a church gym for a few hours of games and relays. The very best part of that fabulous party was watching Emma run and skip the entire length of the gym.
We aren't done with cancer; but Emma feels well enough to run. Her legs and feet don't hurt her any more. Some future treatments will probably return some nasty side effects; but for right now, she is feeling fine. Now THAT is a silver lining.
Thanks so much, Becky, for giving us a week of you. We loved being with you. You are always a super player on Emma's team, and this week you were the star.
Close by, we have lots of friends who have taken a turn to watch the kids during Emma's appointments. People have found lots of other ways to help lift the load.
My sister, Becky, lives in Oklahoma. She can't watch kids, bring a meal, or drop by. She felt like she wasn't helping enough, being able to only send cards and phone calls, so she took advantage of winter break and joined us for 6 days.
This week, Becky watched kids while I took a sick kid (not Emma) to the doctor. She made frozen dinners and stocked my freezer with chopped onions, peppers, carrots, and ham to ease cooking so I'll actually cook more. She and my sister Sarah disinfected every surface in my kitchen, hallway, and bathroom. She deep-cleaned and un-stained the kitchen sink. She folded laundry, braided hair, and vacuumed the entire house including the stairs, corners, and crevices. She sorted through the baby's clothes and pulled out the things he has outgrown. She organized, cleaned, chopped, and prepped like crazy.
She sent Clinton and I to the temple - an opportunity to pray and meditate together. She sent us out on a date. She played games with the kids and also with Clinton and I. We talked and cleaned and cooked. She was a magnet for my mom and other two sisters to come, as well, and they also joined in to help me out and catch me up on things that have simply slipped.
 |
| Mom, my sisters, and me. we didn't take a lot of photos, and none with Becky and Emma. |
Her visit coincided with my family's annual reunion, too, which was so much fun. Again, we took Emma and partied like it was the last one. My brother reserved a church gym for a few hours of games and relays. The very best part of that fabulous party was watching Emma run and skip the entire length of the gym.
We aren't done with cancer; but Emma feels well enough to run. Her legs and feet don't hurt her any more. Some future treatments will probably return some nasty side effects; but for right now, she is feeling fine. Now THAT is a silver lining.
Thanks so much, Becky, for giving us a week of you. We loved being with you. You are always a super player on Emma's team, and this week you were the star.
Tuesday, January 7, 2014
Happy New Year, and YIKES: New Plan Year
Emma had fabulous Holiday weeks.
Christmas was amazing and beautiful. All the kids were delighted with their toys and gifts.
I had been worrying about Emma's ANC, and afraid we couldn't take her to things. Doug said to forget the worry and go to Grandma's, so we did. Well, we didn't completely forget the worry; but we let it go for a bit.
Some cancer kids had their last Christmas. Some kids will be diagnosed this year and won't make it to their next Christmas. Sobering and horrid words in a blog dedicated to seeking out the positive; but those are facts. Worse still, we will know some of them. We don't plan on losing Emma; we plan on many Christmases yet to come.
We enjoyed Christmas like it would be our last, though. We went to Grandma's house Christmas eve and we opened presents and played with cousins and stayed too late and laughed too hard and ate too much. When we dragged our tired kids into the house, we kept them up to open the pajamas present.
We didn't even put a mask on. We lived it up. Had anyone been sick, we would've gone with a mask; but we would've gone.
The 30th was clinic and I didn't post about it. She did great. Her ANC stayed up after the previous dose, so they were able to escalate her methotrexate.
Dr. Engle's theory is that some kids' first dose of IV methotrexate totally shocks the system and crashes all the counts. The kiddo's amazing body takes a couple weeks or more to figure out what to do and how to metabolize this nasty poison, and their counts recover. The next dose of IV methotrexate isn't as shocking, and they handle it just fine.
This explanation makes sense to me and seems to jive with the notion that they escalate the dose on this drug to reach the maximum level that the kid can tolerate in a 57-day protocol.
Additionally, Emma had intrathecal methotrexate in another lumbar puncture. She tolerated it like a champion.
New years eve at about 2:00 in the afternoon, we decided we had better celebrate the holiday. We made a few calls and found my sister and her family were up for some fun. Cousins came over to spend the night while the mommys and daddys played games and stayed up until 1:30 welcoming 2014.
New Years Day, my oldest sister flew in from Oklahoma. I think she deserves her very own post. As we were leaving the airport, Clinton called: Emma had a fever.
After an hour, her fever reached 101.2 and Clinton took Emma to the Emergency Department on the first day of the new insurance plan year. We will reach our deductible and our out-of-pocket max this year; the question is when. We made a nice start.
The ER was pretty busy. They gave Emma Rocephin and a bag of fluid. The novelty of the ER is beginning to wear off, and Emma is less and less happy about going. She did great, though, and was happy to get home and into bed.
Christmas was amazing and beautiful. All the kids were delighted with their toys and gifts.
I had been worrying about Emma's ANC, and afraid we couldn't take her to things. Doug said to forget the worry and go to Grandma's, so we did. Well, we didn't completely forget the worry; but we let it go for a bit.
Some cancer kids had their last Christmas. Some kids will be diagnosed this year and won't make it to their next Christmas. Sobering and horrid words in a blog dedicated to seeking out the positive; but those are facts. Worse still, we will know some of them. We don't plan on losing Emma; we plan on many Christmases yet to come.
We enjoyed Christmas like it would be our last, though. We went to Grandma's house Christmas eve and we opened presents and played with cousins and stayed too late and laughed too hard and ate too much. When we dragged our tired kids into the house, we kept them up to open the pajamas present.
Christmas morning, Santa did not disappoint. We played together and enjoyed the morning. Grandma and Grandpa came to visit along with Aunt Aleigh. Then we went to my sister's house for Christmas dinner with more cousins and Grammy.
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| Making Cookies with cousins at Grandma's house a few days after Christmas |
We didn't even put a mask on. We lived it up. Had anyone been sick, we would've gone with a mask; but we would've gone.
The 30th was clinic and I didn't post about it. She did great. Her ANC stayed up after the previous dose, so they were able to escalate her methotrexate.
Dr. Engle's theory is that some kids' first dose of IV methotrexate totally shocks the system and crashes all the counts. The kiddo's amazing body takes a couple weeks or more to figure out what to do and how to metabolize this nasty poison, and their counts recover. The next dose of IV methotrexate isn't as shocking, and they handle it just fine.
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| Waiting for the lumbar puncture and playing with Polly Pocket Princesses |
This explanation makes sense to me and seems to jive with the notion that they escalate the dose on this drug to reach the maximum level that the kid can tolerate in a 57-day protocol.
Additionally, Emma had intrathecal methotrexate in another lumbar puncture. She tolerated it like a champion.
New years eve at about 2:00 in the afternoon, we decided we had better celebrate the holiday. We made a few calls and found my sister and her family were up for some fun. Cousins came over to spend the night while the mommys and daddys played games and stayed up until 1:30 welcoming 2014.
New Years Day, my oldest sister flew in from Oklahoma. I think she deserves her very own post. As we were leaving the airport, Clinton called: Emma had a fever.
After an hour, her fever reached 101.2 and Clinton took Emma to the Emergency Department on the first day of the new insurance plan year. We will reach our deductible and our out-of-pocket max this year; the question is when. We made a nice start.
The ER was pretty busy. They gave Emma Rocephin and a bag of fluid. The novelty of the ER is beginning to wear off, and Emma is less and less happy about going. She did great, though, and was happy to get home and into bed.
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