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.

Finishing Delayed Intensification

Friday Emma had her second ARA-C dose in clinic. She is doing well, responding to treatment, and skipping most of the common side effects. She also got to see another of her friends that was in the hospital for a few days. To watch little bald girls playing together is a rare and beautiful thing.

Saturday she got chemo at her Auntie's house while Mom and Dad were helping unload a moving truck for Grampa.

Sunday her nurse came to infuse some chemo, and then Emma got to go to church. She was so happy to be in primary, though she wore a mask. We are delighted that winter cold and flu season is ending and that Emma is healthy enough to carefully go out again.

We had dinner at Grammy's house Sunday. Emma's Uncle David brought his hair clippers for Emma  to shave his head. Uncle James had shaved his hair the day before.

Starting out with a reverse mullet: party up front and business in the back.

David was a good sport with the inexperienced beautician. She nicked him a couple times.

James tidied up the uneven patches.

Emma and her team of shaved supporters

Today, Monday, Emma will have her last I.V. chemo of delayed intensification, though oral chemo will continue to the end of the week. Then she gets two weeks off of chemo completely.

After her body has time to recover, we will start the Interim Maintenaince II at the end of March.

Home Health Nurse

Friday went well. We finished up with chemotherapy around lunch time and dropped in to see one of Emma's friends that is inpatient with higher doses of chemo. Kind of nice for both Clinton and I to get to chat with both mom and dad of another cancer kiddo while the bald girls giggle and watch cartoons. It makes us feel a little normal for a minute.

Friday night we took delivery of a huge box of medical supplies: sharps container, chemo container, chemo gowns, chemo gloves, a chemo spill kit, a port access kit, a case of saline syringes, a pack of heparin syringes, chucks, alcohol caps, alcohol pads, hospital hand sanitizer, and three syringes of I.V. chemo.

Saturday morning we met Carly, the weekend nurse. She taught and explained a lot, then administered the chemo. I learned a new acronym: SASH
S- Saline
A- Administer the drug
S- Saline
H- Heparin

If there are multiple medicines, then saline in between each different drug.

Carly taught me to flush Emma's port, which I have seen before, obviously, but not done. When it stays accessed, the port needs to be flushed twice daily, so Clinton or I can do that before bed.

Sunday Carly came again, and then this morning Dillon came. Dillon is our officially assigned home health nurse. He has a reputation for being able to access a kid's port nearly as well as the Hematology/Oncology clinic. He's been doing home health for something near 15 years. Currently about shoulder length, his hair is reportedly grown for the express purpose of donating it.

Dillon de-accessed Emma's port, and she is free from that until Friday when we go onto another 4-day I.V. run.

She has an oral chemo as well, that shouldn't touch anybody's bare skin if at all possible.

The poisons we have in our home to fight cancer... it's a little crazy, and yet I am so grateful for the advances in cancer drugs.

Ready to go

Emma's counts are great and we are waiting for the anesthesiologist. There are 2 medicines and a check of the cerebral spinal fluid in today's lumbar puncture. We get today's LP in the RTU... yay!

We are finally getting set up with Home Health. For the next 3 days, a nurse will come to our house to give chemotherapy to Emma through her port. This will be the first time that she will go home with her port still accessed.

Did not make counts

Emma was scheduled for a Lumbar Puncture today, and to start the second half of Delayed Intensification. The first half was rough, leaving her tired, flushed, lethargic, and a bit grumpy.

 She did get through this month without a transfusion. I'm delighted with that. That's several hours she didn't have to sit in clinic getting blood or platelets. Also, that's a huge win since our insurance doesn't cover blood products. {I know, right? Blood is clearly cosmetic, rather than necessary.} The paranoid part of me wonders if the chemo is doing its job if she didn't get a transfusion; but I try to keep that worry under control.

After a week of recovery, she is sporting a new look and back to the happy giggly Emma.

 

Today's treatment is count dependent. Yesterday we went to the lab to get a blood test. This morning we got the results: her ANC is 300. That is low. Today's treatments are put off to next Friday instead.


Delayed intensification is, well, intense. Dr. Engle tells us that the object is to crash her counts and to make her sick enough to root out any lingering hidden pockets of leukemic cells. One remaining bad cell in her entire circulatory system or in any marrow in any bone could trigger a relapse. Once we begin a segment of delayed intensification, we don't stop unless there is a serious threat.

In order to start, she needs to have high enough levels. It reminds me of a bit from the movie The Princess Bride. The hero lies in the pit of despair being healed of his wounds, and the Albino tells him, "The prince and the count always insist on everyone being healthy before they're broken."

Still loving the Raspberry Fingers. Thanks Grammy.

Fun to compare, this is an old Raspberry Fingers with evidence of the month-long steroids on her face.

This next segment, the one Emma isn't starting today, will include many drugs she had during the consolidation phase. It will add one more, as well. A common side effect of this new drug is fever. Therefore, while crashing her counts, she will be prone to fevers.

When she gets fevers, we go to the Emergency Room. When she gets fevers with ANC below 500, she gets admitted for hospital stays. This will make March a slightly stressful month for our network of helpful family, friends, and neighbors who can watch Caleb, Tommy, and Lizzy.

They say that this is going to be a rough month. On the other end is maintenance. It will take some time to balance her maintenance doses; but reportedly, life will start to get a little bit normal then.

For now, we're praying that another week of recovery will have her ready to take on the next segment.

Peg Delays

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.

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.