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.

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.

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.

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.

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.

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. 

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.

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. 

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.

Day 22

Here we go. On the way to clinic. Should be like last Wednesday,  if all goes well.  Here is a photo of Emma this morning. 

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.

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.

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.

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.

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. 

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.

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.

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.

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. 

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.

Emma's Personal Message

The following is Emma's personal message to you all:

ĺßwaźppolìùfff
Emmà 

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.