We should begin next week, then. In the meantime, here is a today photo of Emma playing with her newest dolls.
Friday, March 28, 2014
Missed counts
Today we thought we would begin interim maintenance II. But Emma missed counts. She is supposed to have an ANC of 750; but she had only 600.
Tuesday, March 18, 2014
Speaking of Hair
I meant to post this several days ago. Thursday afternoon, Grandpa and Gramma Tec (Linda) came over to bring Emma's birthday present. Gramma was wearing a hat, so it took me half a minute to realize...
Emma took Gramma's new 'do in stride, but I still haven't gotten over how loving and supportive this was. Gramma simply said, "I had a choice, Emma didn't."
I find so many examples of greatness and generosity through this experience.
Saturday, March 15, 2014
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.
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.
Thursday, March 13, 2014
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 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.
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.
Monday, March 10, 2014
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.
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.
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.
Monday, March 3, 2014
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.
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.
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