You Can Fly

Once again our family supported us and helped us create a tree for the Festival of Trees. Emma's Aunts Sarah and Jenni joined with Mama as the design team.

We included Emma's "No More Chemo" photo and the dedication for the tree said this:

Toward the end of her cancer treatment, Emma felt like she was a veteran of pokes and procedures. She likes to help new cancer patients – especially calming them about getting their ports accessed. Emma’s advice:

“The way to be brave whenever you are scared is to Think of a Happy Thought.”

On Thanksgiving, Emma finished treatment for Leukemia after 2 years, 2 months, and 3 days.

It is wonderful to be able to sink emotions: fear, sadness, hope, gratitude, and love  - into a creative project.

I hope my family enjoyed doing it. My father built the pirate chest, one sister quilted, another sister created the signs, my brother made Peter's hat. Many gathered and created the materials.

The sold on the bottom of the sign feels so good. The purchase price goes straight to Primary Children's Hospital. I'll always, always be grateful for that amazing house of healing.

Next year we will do a tree again, though we must find a new dedication. Emma is done.

Reflections on a cancerversary

Emma was diagnosed on the 23rd of September 2013.

It's her cousin's birthday, too.

We have met many new friends over the year. We have seen so many blessings and such goodness from so many places. One new friend is a pen pal, David. He and his wife, Natalie, write pretty regularly. I hope they won't mind if I quote from their most recent letter:

I am not sure how you mark the one year anniversary of a cancer diagnosis. Is it an anniversary? Is it a commemoration? Perhaps it is a celebration because of the tremendous experiences that have come to your family over the past year. Maybe it is a way to mark the friends that have come into your life from hospital staff, to ward members, to family members that have shared so much of this journey with you. More likely it is acknowledge that it has been a roller coaster of emotions and this one year mark is just another stake in the sand that helps to hold your tent strong in the storms of life...
My hope is that your family is stronger, your marriage is stronger, and your faith is stronger. All in all that is a pretty good thing. The cost is high, but the outcomes have been life changing...

He's right.

There are many emotions, lots of thoughts, lots of memories.

I put Caleb in a nap this afternoon and held him extra tight, remembering the week last year when I barely saw him and sweet Becca Malone helped wean him and find his favorite bottle and formula.

Shawnya's classroom is now the home of our school's reading aids, where Emma enjoys "lunch bunch" getting caught up in reading skills since she missed preschool. But a year ago, that portable classrom was where Lizzy went after school. What a blessing that Clinton's sister taught just one year in this district, the year we needed her the most.

I've been thinking a lot about the family whose 4-year old is complaining of hurt legs, or who is pale or bruising that don't know yet but are about to be plunged into this world of cancer. I'm mourning a bit for their innocence and hoping they have the courage to pull together. Somewhere today, there are several families getting their first introduction to A.L.L. I am thinking of them a lot.

Mostly, though, I am grateful.

I am grateful for the researchers who have figured out how to fight leukemia over the last century.

I am grateful for our doctors and nurses who followed a career into pediatric oncology - what must be a heart-rending profession on so many days. They are dedicated and compassionate. I will love them forever.

I'm also grateful for the rest of Primary Children's Hospital - the ER staff, the other doctors, nurses, techs, pharmacists, receptionists, administrators, cafeteria workers, volunteers, cleaners, and laundry mechanics.

I'm grateful for the other health professionals. Our home health nurse, our own pediatrician, the doctor who sent us to Primary in the first place, the lab people, and on and on.

I am grateful that CapitalOne picked Emma for their grand prize - as our medical bills are under control right now.

I am grateful for the gifts of time, food, money, drive-through gift cards, toys, blankets, hats, service, prayers, cards, art supplies, and more.

I am grateful for Emma's Team. For all the people that have put their efforts and interest into Emma and our family. Friends, family, family of friends, friends of family, and more.

I'm grateful for Make-a-Wish and for Give Kids the World. I'm grateful for Camp Hobe. I'm grateful for HopeKids and for ACCO.

I'm grateful to my facebook mamas group, who support and love each other and understand what it is to be moms of cancer fighting cuties.

I am grateful that I still have my Emma. I am grateful for my little family who are, I think, stronger and closer together.

I am grateful for my faith. It sustains me.

Friday - the other stuff

On Friday Emma had a big day. I'm going to tell about everything except Maintenance, since that is enough information for its very own post.

Primary Children's Hospital has a lot of wagons, wheelchairs, bikes, trikes, and toddler pedal cars. The bikes, trikes, and pedal cars mostly stay in units. Wagons are used within units for sure; but they get a lot of mileage discharging kids, and there are usually a few wagons near the entrance, as well as wheelchairs.

Since Emma has the broken leg and needs to stay off, we got into the hospital and let her choose the chariot for the day. She chose a red and green wagon. I should have taken a picture at some point; but alas! Daddy took the day off to come to Emma's appointment. He usually comes when she starts a new phase, and he really wanted to be there for the last phase - Maintenance.

BUSTED LEG
In the midst of our normal consultation, a pair of orthopedists, Chris and Zach, came in to take a look at Emma's leg. They trimmed her fiberglass brace down to allow her knee to bend and then re-wrapped. They didn't put a cast on because there is still some swelling from the original injury. She will get a cast on Wednesday; in the meantime, no weight or pressure, and keep it in the brace except when bathing.

COUNTDOWN
We know the end date. Emma will finish treatment November 27, 2015. Barring relapse, that is the day she will ring the bell, signalling the end. I could probably put some ghastly animated gif here to express the excitement of that statement; but I will spare all of us.

LUMBAR PUNCTURE
Yes, the lumbar puncture is part of maintenance. Her last LP was a bit rough. She was really nauseated when she woke up. She threw up a few times and was groggy and grumpy the rest of the day. This Friday, she was nauseated again. The nurses helped her avoid throwing up; but she didn't eat anything or drink anything after.

Because there was so much to do before her scheduled LP (orthopedists, paperwork for study, order correct chemo based on study randomization, explanation of maintenance, port access, etc.) Emma had to go back to clinic to get her chemo after our LP appointment.

She was wrapped in blankets and looking miserable in her wagon. Our superstar oncology nurses were pretty concerned. They found some life savers to help mask the taste of the chemo, saline, and heparin that she was getting through her port.

Becky suggested that we try the sedation for her next LP, so we checked out the Sedation Room. There are the 3 places you can get a LP: Same Day Surgery, Rapid Treatment Unit, and Sedation.

SAME DAY SURGERY
This is the place where all the kids come for surgery, whether to get a cataract removed, an Atrial Septal Defect repaired by the cardiologist, a compound fracture set and pinned, a port placed, dental surgery, and so on. All kinds of things happen here, and the process is set up for major surgery. When she gets an LP in surgery, we register in the waiting room, Emma changes into hospital pajamas, the anesthesiologist takes her at the good-bye door. The doctors are all in scrubs, and the parents wait in the emotional surgery waiting room. It's a bigger deal. The recovery tends to be longer, the anesthesia just a bit heavier, and the kid is groggier. This is where we go if RTU is fully booked.

RAPID TREATMENT UNIT (RTU)
Twenty years ago, the folks at Primary Children's Hospital were looking for a good solution for the large number of kids who needed fairly quick, simple procedures. These are the kinds of procedures that adults probably wouldn't be sedated for. Kids are squirmy, wiggly, and tend to get anxious or apprehensive, though.

A Lumbar Puncture takes less than 15 minutes. In practice, it is a lot like an epidural. The doctor pokes a needle into the spinal column, removes just a bit of cerebral spinal fluid for testing, and then injects some chemotherapy. When it goes slick, the procedure itself can take a minute or two. Five including scrubbing the poke site and putting on a band-aid afterwards.

We take her in and set her on the bed. I hold her hand while the white medicine goes into her tube, and then as she falls asleep, I kiss her on the head and go wait in the hall or maybe grab a sandwich in the cafeteria. It's pretty quick.

I've had epidurals, and I get squirmy for them. It makes sense to sedate a kid briefly; but it doesn't warrant scrubs, hospital jammies, and a sterile operating room. Sterile instruments, obviously, and a clean bright room, sure. The RTU is great for exactly this kind of thing. We love the RTU.

SEDATION
Nurse Becky showed us the sedation room. We have heard of it, and we will do it next time to see if Emma handles it well. Sedation is a slightly large exam room. Our own oncology nurse would administer the appropriate drug that would make Emma sleepy - ever so light and quick. She would be a bit loopy after. Becky says the absolute longest any kid has been out was 15 minutes - usually closer to 5 minutes. Then the doctor would do the LP. Mom and Dad sit in the room and watch the whole thing.

To be a good candidate for Sedation, though, a kid has to be a bit less anxious and a bit tougher, since it isn't complete anesthesia. Our nurses think Emma would probably do just fine, and it's definitely worth a try since anesthesia is beginning to cause nausea, grogginess, and super intense grumpiness.

It will be 3 months until her next LP. That is fine by me, and then we'll have a story about how well it works.

Happy Birthday

Emma was toasty at bedtime. 101.2 and a touch higher at the ER triage.

About 5 minutes after midnight this crowd came in to sing her Happy Birthday.



The ER gave her a blue elephant blanket and a Pisces bear. Somebody even found a birthday card.


At about 10 after midnight we got her counts back: ANC 100, so we are headed for the 4th floor for the night.

*******

Later, after 4 hours sleep, I add to Emma's Birthday story.

After breakfast, which featured a rainbow cupcake, the ICS staff came to sing and bring presents. 

The clown, Chip, stayed to play bubbles and a game with her.

Emma settled down to some crafts after that, with additional visits from other Hospital volunteers with balloons and nurses checking vitals.

Emma didn't feel like using her window markers, so I did.

She got a set of Barbie mega blocks and built a shop for Barbie to buy hats and purses.

Her birthday bear wore her hat and clown nose for much of the day.

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.

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.

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.

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. 

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.

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. 

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.

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

Email to family Sunday

Update,

White blood cells are low, red blood cells are low, platelets are low. This could indicate a few different things,  among them,  leukemia.

Chest xray shows a little bit of enlarged on one side of the heart. This could indicate a few different things, among them,  leukemia.

There was also a bit of cloudiness in one lung, which looks a bit like pneumonia, or it might be an indicator for leukemia.

She has a lot of bruises on her legs, feet, and back. We don't suspect physical abuse, but even aside from that, she's an active kid; but the bruises can also be an indicator for leukemia.

She's been complaining of pain in her feet and legs- and where it hurts moves. Serious limping sent us to instacare Saturday. Bone pain can mean growing, or other things, or Leukemia.

Emma's blood under the microscope doesn't definitively tell. They see suspicious things, but no absolute. 

We are waiting for an operating room. Once they pin together all the broken elbows and stuff, we will go in for a bone marrow aspirate and biopsy. The marrow will tell definitively whether we have leukemia. They have a couple other possible diagnoses; but you can see the evidence.

They don't allow plants, so no flowers.

Primary children's is a good place for a 4-year old to be in the hospital. Emma has a pile of polly pockets, an xbox, coloring books and crayons, a pinkalicious puzzle, and princess memory, in addition to cable and movies. She can request any other toys and books, too.

We went to 30-minute sacrament meeting. Our ward is on alert.

We will let you know anything else. Thanks so much for prayers and support.

Clinton,  Merinda, and Emma