Camp Hobe

I haven't posted an update in more than 3 months.

Things have happened. Emma visited clinic every 28 days to get her IV chemo. She had another back poke in the sedation room, and that went really well. Chemo into the CSF, a sample of that fluid for testing, and still no leukemic cells detected.

She finished her second year of music classes and did well at the performance. Here she is with her cousin who was in the first year. You can see how her hair is growing all over.

The Brighton High School softball team invited Emma to come co-captain a game. She got to call the coin toss and her official Brighton Jersey is number 45.

Daddy and Momma went to Moab for 4 days to run a race and to celebrate 11 years of being together. (we skipped #10 in favor of chemo.) While we were gone, Grandma Reeder had to take Emma to the E.R. with a fever. That was pretty dramatic and scary for Grandma.

This weekend Emma had another fever and another E.R. visit. She is doing well since.

One of the really cool things that happens because of cancer is that Emma and Lizzy and Tommy got to go to Camp Hobe. It is a week long camp every June. All the other kids are also cancer kids or cancer siblings.

Lizzy has been talking about camp Hobe for months, so excited. She got to stay overnight last year, all week long. This year Emma was old enough for week-long camp, too. They had their bags packed and were ready to go well in advance.

They swam every day, they rode the zip line and did a ropes course. They did crafts and sang campy camp songs. They stayed in cabins and played pranks. They were slathered in sunscreen, dipped in popsicles, and rolled in the dirt, I think.

Lizzy's favorite camp prank is to write the letter P on a bunch of yellow post it notes, and then put those post it notes all over the same-aged boy cabin, so the boys return to find P in their cabin. Super hilarious, I know.

We picked up the girls and both had friends with whom they need to set up play dates or pen pal arrangements. They can't wait until next summer to see their friends again.

Tommy went to one day of camp and did a lot of the same things. When I arrived to pick him up, he said he didn't want me there and that I should go away because he didn't want to go home. Not bad for a kid who wouldn't speak to anybody or make eye contact during drop-off.

Lizzy is planning to be a Counselor in Training when she is 16. I didn't know that was the timeframe; but Lizzy is totally aware. They get to attend until 3 years past treatment, so with luck we only get to attend 3 more summers. With luck, Caleb will not get the experience of week-long overnight Camp Hobe.

At this point all is promising. Emma has had no unusual or anomalous tests. She is handling her chemo well. Her ANC is kept well below the average person.

We are discovering a pattern. When her system is stressed: when she doesn't sleep in her own bed and eat normal food, or when she keeps going going going sunup til sundown... Under these circumstances that stress her body, she reacts with a fever.

Sometimes there is a virus or something causing the stress; but sometimes external influences bring on the fever. When we left her at Cousins and Grandma's house for 4 nights to go to Moab, she fevered. Camp Hobe... Fever. Last summer our family camp in Jackson featured a fever that prompted a mad dash to Salt Lake so she could be directly admitted.

It might be prudent to avoid all body stresses; but we do have another family camping trip scheduled this summer. This time, though, it is located about 45 minutes from Primary Childrens. I picked the venue to be closer. The pattern is emerging, though, and I would be unsurprised if we don't end up with a fever again.

Cancer is becoming the annoyance that Dr. Engle said it should be. Maintenance is significantly less stressful than the previous phases of treatment.

We are still juggling her daily meds. We changed doses last appointment, so now the med schedule looks like this:

Monday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Tuesday: 2.5 mg Septra morning and night, 1/2 tablet 6MP
Wednesday: 1/2 tablet 6MP
Thursday: 1 tablet 6MP
Friday: 1 tablet 6MP, 5 tablets of methotrexate
Saturday: 1 tablet 6MP
Sunday: 1 tablet 6MP

plus 2.5mg Dexamethasone morning and night for the first 5 days of each 28-day cycle.

Simple, right? The only bottles with the correct dosing written on them are the Septra and dex. All the others have previous dosing, so we have to keep it all straight.

She's doing pretty great, though. All the kids are. So there's the update after 3 months' silence.

Things I forget

Emma had a fever yesterday. Grandpa and Gramma Tech were at our house, and also Aunt Aleigh was at our house. Tommy and Caleb were opening new birthday presents. Aleigh was in town from California. Emma was hiding under a blanket not talking to any of the relatives she loves to play with. I didn't really want to take her temperature, because I wasn't in the mood for the answer.

101.7, and you all know what that means. I took her to the E.R. We waltzed past the people sitting in the waiting room, zipped through triage, and directly into a room. Emma sucked on a cherry flavored Jolly Rancher to mask the smell of the alcohol scrub and the saline flush during port access.

Her tech was a little late getting in, helping somebody else. He bustled in and helped get the right tubes and bottles for the blood counts and cultures. I said hello, I think you've been our tech a couple times. He said it's been 3 or 4 and he remembers Emma.

She was cold. We came wrapped in her thick fleece NEVER EVER GIVE UP blanket, a gift from the Jesse Reese Foundation (Thanks and NEGU!) She was still cold, so her nurse brought a warmed blanket and another fleece to bundle in.

She got her rocephin and the counts came back pretty quick. Her ANC is over 3000, so I expect a dosage adjustment this coming Friday during clinic. They want to keep it between 750 and 1500. We were discharged before she finished her first movie. It may have been our quickest ER visit yet... frequently we are into a third movie before we can go home.

I knew my niece was on her way, so we looked around and found them in the triage line. We talked with Brookie and her mom for a few minutes while they waited for their chance to get into a room. Primary Children's isn't a place you want to meet friends and family if you can help it; but if we're there at the same time we definitely stop for a hug. We are praying Brooklyn feels better soon.

Emma is pretty warm this morning - 99.8 and not going to school. Luckily, the rocephin is good for 24 hours.

This morning I was talking with a friend I haven't seen in a few years, discussing the challenges that we are both experiencing. I sometimes forget what we went through at the beginning. I forget that Emma didn't walk for a month. I forget how dependent we were on anybody who was willing to help a bit. I must have had a dozen different neighbors babysit to give my family breaks during the first few months we were at the hospital so much.

I try not to forget what I am learning. Cancer is a high-profile trouble; but I hope I am learning a bit of empathy for others, too. I suspect that a large chunk of the population is going through serious difficulties at any given moment. Most hardships aren't quite as visible as cancer.

I forgot that I have a FAITH label on this blog. How could I? Well, here comes some Faith aspect.

My friend reminded me of a post from 16 months ago, and I saw the meme on facebook again this week. Forgive my language, but it really doesn't convey differently:

God will only give us what we can handle. Apparently God thinks I'm a bad-ass.

Funny, perhaps, but wrong.

I am certain that God does let us have things that we cannot handle.

I know that I am not as strong as the things that I have. God has stepped in and taken care of some things. Two years we have had huge financial miracles that have covered our $10K deductible and out-of-pocket max. It was a miracle the first time, and it was another miracle the second time... maybe even more so because lightning struck twice. First Capital One, and then the Brighton High School community. God directed us to move to Utah so that we would have the family support that we have needed. In those things, God has cleared the trouble out because that wasn't our test. Cancer has different lessons for us. Other parts of our life have different lessons for us.

In other things, though, He has let us struggle and flounder and need him. We have had to put our faith and trust in Him. As we learn to put our trust in Him and to accept His grace, He makes us more than we were. This is the refiner's fire. This is how weak things become strong. This is grace at work and the atonement in practice rather than in theory.

I think I said something like this in September 2013. It is more real today when I look back. I don't expect that this will be the hardest thing I have to do in life. Life is refining and growing and building of character, if we let it be. I certainly hope I'm a better person than I was. I absolutely hope to become a better person than I am.

I am so grateful for the front row seat we have to see the hand of God working through other people. We see the very best of humanity. We see people at their best, because we have been so weak. I trust that God did this on purpose, because he wanted us to lean on Him and to learn of Him through those around us. We don't always do a stellar job of it.

Now, don't let this faith and gratitude for the lessons of cancer confuse anybody about the absolute need for better treatments. I'm absolutely dedicated to research seeking more effective treatments, less toxic treatments, less of the knife-edge balance act between toxicity and efficacy, less trauma, and more varieties of cancer fought with viable treatments.

New insurance year

I should have updated with December activities, with our last clinic, or with that beautiful crop of slightly messy, slightly wavy, soft hair.

The action this morning is a trip to the emergency room. Emma had a fever Friday night. Daddy brought her in about midnight and they were home by 3:30 a.m. Saturday afternoon I got a call from Dr. Wright letting us know that Emma tested positive for RSV.

We skipped our Brighton High Classic Skating Night and she missed church-just staying home and away from nice healthy people, and also nice sick people.

Last night she was toasty... Dancing back and forth over the critical 100.4 line and even up to 100.9; but never to the momentous 101 mark. If she holds above 100.4 for an hour, then she goes in to the clinic.

Today is a holiday, though, so clinic is closed. We are in the Emergency room since Emma has been a hot little kid this morning. 

At triage she was high 98, so not a big worrisome fuss. Fever gone. She will get rocephin. It is a fabulous broad-spectrum antibiotic.

Busy few days

Thursday Emma had a fever and we visited the Emergency Department. All the regular stuff... blood cultures, cbc with diff (complete blood count with differential) rocephin, Tylenol. 

Her ANC was 6700 - really pretty high. We went home. The rocephin is a broad spectrum antibiotic that is good for 24 hours.

Next day she went to the farm with Grandma and Grandpa. They brought lunch home to the rest of us. Emma didn't feel like eating.  She was tired,  and her cheeks were red, and her eyes had that look.  She was hot. 101.7 degrees.

The rocephin was still active; but I called to ask about timing for Tylenol.  Dr Engle and Doug were in, since it was Friday.  They wanted to see her, so Grandma took the others home while I took Emma to see the Doctors.

They did blood cultures,  a urine test, and rocephin again.  Dr. Engle figures the high ANC indicates that the neutrophils are all mobilized to fight whatever is causing the fever. Then we headed home.

This morning we got a call from the hospital. Her Thursday blood culture grew a something.  I can't remember what,  but she needed to come in. Daddy brought her to be admitted.  Vancomycin is the antibiotic of choice for this kind of bacteria.

She reacted to the Vancomycin with puffy lips and a red face, so they folloeed up with benadryl. They don't categorize the reaction as allergic; but they premedicated her evening Vancomycin with benadryl and they are running the Vancomycin over a much longer time frame.

They are running additional blood cultures. We need to have additional samples to rule out cross-contamination of the first sample.  Also, with Vancomycin running in, we need to see that it's working and that her blood is clean again.

Update: no more vancomycin. She did it again. The nurse called it Red man syndrome.  She got all hot, her hed turned red, and her lips puffed up again. They stopped her infusion and will let her sleep a bit. In the morning,  she will get rocephin. It isn't as targeted as vancomycin; but it also won't trigger red man syndrome.

Sunday morning update: she has red bumps on the palms of her hands. 

Survey says: hand, foot, and mouth

This is separate from the blood cultures. (Sigh)

And home again

The morning ANC Thursday was 100. Thursday night she reached 104.9 degrees and the doctor approved a one-time dose of Advil. Emma has not had ibuprofen since diagnosis. They decided her platelets were high enough that she could probably take the ibuprofen without too much risk, particularly considering her temperature.

Friday morning her ANC climbed to 200, with temperatures continuing to be high between Tylenol doses.

Her last Tylenol was about 1:30 am Saturday morning, and the ANC when the sun came up had reached 1100.

"Why did it jump so much?" you might ask. "Is that normal?"

I don't know.

I do know that she came home Saturday a little after noon. She is on an oral antibiotic just to be cautious, but it is likely she fought a virus and it has finished its course.

Her energy levels are approaching normal, and she seems to be her normal usual cheerful self once again.

Our sincere gratitude to Jen and her family, and to Grandma and Grandpa Reeder for watching the boys so Momma could be at the hospital and Daddy could work. Thanks to Grampa and Gamma Tech for coming to the hospital twice, and for Grampa sitting with Emma for 6 hours Friday night, giving Mom and Dad a chance to keep their Friday plans and also switch. Thanks Traci and Syd for visiting Emma.

Also, though they probably don't read my blog, thanks to the donors and volunteers that support the Ronald McDonald family room. Two nights I was there, people came and made dinner - so nice to be able to just pick up a plate, fill it, eat, and get back to my baby without the cost of the cafeteria. I also grabbed lunch from the fridge and freezer in there twice this visit. I am so grateful for that. I may not get a Big Mac very often, but boy I am grateful for the McDonalds' charity. It makes a difference to me.

Toasty with low counts

Emma got the thermometer to say 102.4 and I had the bag in the car by the time we got through to the nurse.

Her ANC was 100, so we are here. The threshold for hospital admittance is 500. At low levels like this, Emma can't fight off germs.

So far she has been negative for the common respiratory viruses on the panel that they ran. Her blood culture has not grown anything.

That is all pretty good. 

Her temperature won't go down on its own. She can have Tylenol every 6 hours, but by hour 5 or 5 1/2, she is pushing 104. Last night she got to 104.5. 

She is also acting pretty tired and grumpy, but she is in good hands.

Hot August Nights

On Tuesday the 19th, Emma was warm. All of Emma's team realizes that she gets hotter later - her fevers are usually after hours. At about 2:00 I called clinic and asked whether her slowly-rising-just-barely-reaching-100.4 temperature was good enough to come to clinic, or should I wait an hour?

They trust the momma instinct and experience and said to come in. Gramma Linda was in the area and came to sit with the other kids til Daddy could get home.

Emma got a dose of rocephin, which is a tough antibiotic that covers most any bug for 24 hours. Her blood counts were really high. I think her ANC was in the neighborhood of 3500. Way high for this kid. Good enough to head for home and no worries.

The next afternoon she continued to be warm, and it was only at about 7:30 p.m. that she hit 101 degrees. Daddy took her to the Emergency department for another dose of rocephin.

Her blood cultures and urine cultures didn't turn up anything. No infection. Probably just a virus; but not one that was identified specifically in the lab results.

Family Camping Trip

Every Summer we go camping with Emma's Techmeyer cousins. Most years, Emma's great Aunt and Mom's cousins come, too. This year gathered 3 of the grandparent generation, 17 of the parent generation, and 24 of Emma's generation. We met the week of July 4th about an hour from Jackson, Wyoming.

The Grey boat of Aunties and Uncles and Zach. Daddy, Lizzy, and Momma took this picture from the Red Party Boat. Emma and the boys were at camp.

We rafted on the Snake River and we hiked around Jenny Lake. It was so fun for us to be normal for a bit. Sure Emma had a broken leg, but what is more normal than 1 kid in 24 wearing a cast? The kids used magnifying glasses to burn designs into wood. They made necklaces from beads and neckaces of cereal. We cooked around the campfire and we stayed up late laughing and playing games.

Our little family surrounded by The Family eating our lunch at the falls that feed Jenny Lake

The morning of Independance Day, though, Emma crawled out of her sleeping bag and onto our cot, toasty warm. The thermometer said 101.2 degrees, which is a one-way ticket to the emergency room.

Those who were awake at 6:30 pitched in, rolled sleeping bags, folded the tent, collapsed the cots, hitched the trailer to the van, and loaded it up. They packed us a breakfast of muffins and juice and fruit and we hit the road. The Primary Children's oncologist wanted blood draws much sooner than a drive to Salt Lake, so we drove to Idaho Falls and reached the Emergency Room at about 8:00.

Idaho Falls Emergency Room with a bear, crayons, a coloring book, and a personal TV.

I was really nervous to go anyplace that isn't Primary Children's. Some would just see coincidence; but I think there are logistics angels who watch out for us and influence things like the holiday schedule of the emergency department. Our ER nurse volunteers at a cancer camp in Idaho, and our ER doctor had a child with cancer while he was in medical school. While he isn't an oncologist, he is a cancer dad and so he gets it. He took Emma seriously, as his own daughter went septic three times and nearly died once. They were so great with Emma. They were so great with me. They did everything that I could hope for Emma.

Emma's ANC measured at 150. We needed to be admitted. After consulting with the team at Primary Children's, they agreed that Emma needed to be with her own oncology team. For a minute it looked like they might want to handle transporting her; but they agreed to let her ride there with her family.
The ER nurse got us 6 boxed lunches and we drove straight to Salt Lake City without stopping.

(While Emma and I were in the ER, Clinton and the other kids got gas and went to a park.)

Grandpa Tec and Gramma Linda met us at Primary Children's. Once I got Emma settled, they sat with her while I took my campfire odor back to the van. Clinton and I went home, showered, settled the kids, and then traded nights for the next 48 hours.

Emma colored her placemat to send a thank you to the nutrition team

Emma probably had a virus; though all her tests came back negative for this stay. Her red blood and platelets were on the border for transfusion, and the doctors decided to watch and see if her ANC would rise on its own.

Until they know she isn't infectious, everybody that comes in the room covers up to prevent the spread of germs. This fabulous nurse scoured the place to find Emma a Barbie.

She went home on seriously heavy IV antibiotics. They would continue until her ANC reached above 500 nearly 3 weeks later. It took all that time; but her counts did ultimately recover without a transfusion.

Summer colds

Caleb's cold advanced to croup this week and we thought it was probably a matter of time. Sure enough, Emma is in the emergency room getting treatment for a fever. 

She met shock protocol when we arrived. Combination of temperature, respiration rate and something else. We arrived about an hour and a half ago. There was a line at the reception desk, they saw us come in, asked if this was Emma, and whisked us into triage and thence promptly to a room.

She isn't perking up right now, so it might be a longer night than I was hoping. Oxygen levels are not awesome, so her nurse just started some of that. 

Emma doesn't like the O2 line in her nose; but our nurse has mad persuasion skills and is pretty good at easing it on gently and waiting for Emma. 

I am so grateful to have this hospital close enough for nights like this.

The day after

When they first admitted her, Emma's hematocrit was at a level that didn't NEED a transfusion but was close. They typed and cross matched during the night, and the doctor said to wait and see. They ran a blood culture and virus scans. They took her temperature a lot.

The Emergency department was completely out of Emma's size of port access needle. She has a power port and takes a 22 gauge 3/4" needle. They used a 22 gauge 1" needle that necessarily poked out of her chest a little more. This morning they were having trouble with the improvised needle and replaced it with the correct one. So there, a bit of trivial medical hardware distinction that almost nobody on the planet will ever need to consider.

During her birthday, Emma's temperature was going up and down quite a bit from the 98s to a high of 100.2 Fahrenheit. Never a fever; but flirting with it. She tested positive for two different viruses. They have her on an antibiotic, not for the virus; but because they don't KNOW that she DOESN'T have an infection. [Yes I used a double negative. On Purpose.]

Infection and central line should never mix. This is the point of the hospitalization with a fever and low ANC.

This morning, Emma's counts show her ANC rising, but her hematocrit dropping. Rather than waiting for Monday, they will transfuse today. When they send her home, she will have her port still accessed for 8-hour I.V. antibiotics. We'll have some regular blood tests happening to indicate when to stop with the antibiotic.

We expect that Emma will come home this afternoon.

We are loving all the spring and the lovely weather and the end of flu season, coupled with Emma finishing the heavy parts of chemo. This hospitalization reminds me that we aren't out of the woods yet.

Incidentally, for those who read these posts by email rather than on the blog, I added more of Emma's birthday story to the previous post, with lots of pictures. Blogger doesn't send out updates, just new posts. Anybody who is reading this on the blog and thinking, "hey wait, I want updates emailed!" just let me know. I'll hook you up.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

ER Frequent Visitor Card

I wonder if they have a punch card or maybe patient-of-the-month parking at the Emergency Room. Emma had a fever yesterday late afternoon and her Daddy took her in to the ER. Emma's ANC is rising, and all her blood counts were good. With cancer, though, you have to take fevers seriously. If she got fevers early in the day, we could go to the clinic for this; but evenings they send us to the ER.

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.

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.

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.