John and Erin got home safely after a long day in Salt Lake City. The night before they left, John and I made a huge list of all of the things we wanted to discuss with the Doctors and Pharmacists. I had spent much of the afternoon researching medical articles about AML patients with Cellulitis.
First they visited with Dr. Michelle Bennett, a Pediatric Gynecologist from the UofU Medical Center. She prescribed Erin a steroid cream Clobetasol Lipoba to be used on her Cellulitis. I believe the cream is to act as a barrier to protect the skin where the Cellulitis is. Erin is also supposed to take a little bath and soak her bottom 3 times daily and keep her diaper area dry. We tried putting her in panties yesterday evening so that she could sort of air out. She ended up peeing on a chair and was so scared when all that pee came out of her. We cheered and clapped for her so she wouldn't be scared if it happened again. We also picked up a little potty from IKEA - $4! We're not really potty training her yet though because we like her in diapers when we're living at the hospital - it makes a lot of things easier.
After Dr. Bennett's visit they saw Dr. Fluchell, one of our Oncologists at Primary Children's Medical Center. The CRP (inflammation blood test) showed that the swelling in her Cellulitis is dropped to 1.6. It was 2.6 just two days previous. That is a good sign! Her ANC (fighter white blood cells) flucuates so much and it is down to 1700. It was 2400 just two days previous.
We think that maybe her Immune System is out of whack because of what the Chemotherapy is doing to it. Because, now that her ANC is up in a good range for fighting infection her body somehow isn't recognizing that it has an infection. I wish there was some way to jump start her Immune System into overdrive on that Cellulitis.
John talked to Dr. Fluchell about one of the medical articles we had found the previous day. In the article, the girl (who also had Cellulitis on her labia), had an Antibiotic Susceptibility Test done and it was determined that the bacteria in her Cellulitis was resisitent to more than 6 of the medications they were giving her. We decided that we wanted to have an Antibiotic Susceptibility Test done too, but that requires a biopsy of the Celulitis. We would really like to find out if these strong antibiotics we are giving her are even doing anything. The biopsy is a big process though, and it can come with even more complications. Come Monday, if her Cellulitis hasn't diminished, then we will most likely end up doing a biopsy and the Antibiotic Susceptibility Test. We're running out of time on the Cellulitis. The longer it just sits there the more complications that can happen.
In the meantime, Erin had blood drawn for a Virus Test (haven't gotten the results from that yet) in the event that the Cellulitis is stemming from a viral infection. She was also put on Clindamycin (antibiotic) which she takes orally and it smells like gasoline. We had the Pharmacist mix it with watermelon flavoring - but it still smells like gasoline. Erin gives herself all of her oral medications and she is so brave when she takes that one. She told us that it tastes yucky.
John and Erin visited a Compound Pharmacist to have him mix the steroid cream. They mixed the cream with Crisco! He also visited the Primary Children's Pharmacist and got the Clindamycin there. Then he went to our Home Health Company and picked up several boxes of IV medications (Vancomycin and Meropenem) that will last us a week. They are taking over our fridge. All of her supplies seriously need a room of their own. I can't wait for this to be over so that I can get rid of every last syringe, tubing, saline, heparin, caps, alcohol wipes, etc.
Monday morning we will have our Home Health Nurse draw labs for a CRP to see if the inflammation has gone down in the Cellulitis. If is has gone down and the Cellulitis is almost gone then we will admit her on Wednesday (November 10th) for her last round of chemotherapy. If things aren't improving, then we will have a biopsy of the Cellulitis done which will help us determine what type of bacteria is lingering and which drugs will be able to fight against it.
Thursday, November 4, 2010
Getting Some IV Stuff
A little bit of medication.
Erin playing with one of the boxes
The set up for the IV meds.
2 pumps, Vancomycin, Meropenem,
4 saline flushes, 4 alcohol wipes and 2 caps.
Cleaning her line with an alcohol wipe.
Flushing her line with Saline.
2.5 hours later - All done.
Dancing around!
.Ta Da!
Repeat every 5.5 hours.
This is how we feel after 3 weeks of this.
Wednesday, November 3, 2010
Thanks For Family
Today I found an interesting picture in Cecily's backpack.
Left to Right
Erin, Cecily, Dad, Mom, Caleb
Cecily's depiction of Erin in a pink hat says it all!
Tuesday, November 2, 2010
New Strategy
Okay. I had a good long chat with Dr. Fluchell today. He told me about his meeting with the Infectious Disease doctors and other Oncologists. Frankly, I think they're all a bit puzzled. We're going to keep Little Air Bear on the Vancomycin and the Meropenem, but she's going to start taking Clindamycin orally. They debated about giving it to her through the IV, but they don't want to kill us off by having to do all these IV medications. Seriously, we haven't slept in WEEKS (well, really months)! So, the Clindamycin is pretty awful tasting, but we're going to get the Pharmacy at Primary Children's to mix it up with some yummy tasting syrup, probably Root Beer flavoring since that's Erin's favorite.
Now, the latest news is that she has an appointment tomorrow with a Pediatric Gynecologist through the Uof U. It is very hard to find a Gynecologist who specializes in Pediatrics, but we've got one and they fit her in during their lunch hour. So, to tell you more about her Cellulitis since I'm sure you're wondering now more about the details on it. It's a tough subject for us since it's in such a private part of her body. The Cellulitis is located on her right Labia and is about the size of a pea pod. It's got to be really uncomfortable, but Erin seems to barely notice it now. We wish it was GONE! GONE GONE GONE! So, hopefully the Gyno will have some magic powers!
They team of doctors also metioned that it could (BUT VERY UNLIKELY) be a Chloroma. A Chloroma is a collection of Leukemia cells outside of the bone marrow. It's very unlikely that she has a Chloroma because she developed the sore shortly after being given some super duper strong chemotherapy drugs. As you can see, we're looking at all avenues.
As long as I'm talking about things that we are trying to figure out. . . today I noticed that Erin's line is making a wheezing sound when I push anything through it. The noise is coming from the area where her line was repaired. Niiiiiice. Probably going to have to fix it tomorrow when she's up there. Just one more thing to add to the list.
John is going to make the trek to Primary Children's tomorrow morning. Wish him luck! I hope that he comes home with a happy girl who has some answers on her Cellulitis sore.
Now, the latest news is that she has an appointment tomorrow with a Pediatric Gynecologist through the Uof U. It is very hard to find a Gynecologist who specializes in Pediatrics, but we've got one and they fit her in during their lunch hour. So, to tell you more about her Cellulitis since I'm sure you're wondering now more about the details on it. It's a tough subject for us since it's in such a private part of her body. The Cellulitis is located on her right Labia and is about the size of a pea pod. It's got to be really uncomfortable, but Erin seems to barely notice it now. We wish it was GONE! GONE GONE GONE! So, hopefully the Gyno will have some magic powers!
They team of doctors also metioned that it could (BUT VERY UNLIKELY) be a Chloroma. A Chloroma is a collection of Leukemia cells outside of the bone marrow. It's very unlikely that she has a Chloroma because she developed the sore shortly after being given some super duper strong chemotherapy drugs. As you can see, we're looking at all avenues.
As long as I'm talking about things that we are trying to figure out. . . today I noticed that Erin's line is making a wheezing sound when I push anything through it. The noise is coming from the area where her line was repaired. Niiiiiice. Probably going to have to fix it tomorrow when she's up there. Just one more thing to add to the list.
John is going to make the trek to Primary Children's tomorrow morning. Wish him luck! I hope that he comes home with a happy girl who has some answers on her Cellulitis sore.
Shannon Tavarez
We were saddened today to find out that Shannon Tavarez, who played Nala in the Broadway Production of The Lion King, died yesterday from Acute Myeloid Leukemia.
You can read more about the details HERE.
Monday, November 1, 2010
Bone Marrow Results
We got Erin's Bone Marrow Aspirate results today. She has no sign of Leukemia cells in her bone marrow. This means that she is still in remission.
Staying Put
We are staying put . . . no chemotherapy tomorrow!
Erin's Cellulitis sore in her diaper area is looking worse and her CRP (blood test that shows inflammation) has gone from 1.4 last week to 2.6 today. A normal CRP is 0.8. We are very thankful that we didn't start chemo last week because her sore would have been awful and she wouldn't have any immune system to fight it. So . . . here we sit.
Dr. Fluchell called this evening and told us the news. He said that our team of Oncologists and Infectious Disease doctors are going to have a "pow wow" (his words) tomorrow morning on Erin and decide on a new path. She has been on two "bazooka medications" (his words again) Vancomycin and Meropenem for over a month and so they are going to see if there is something even stronger that will work for her.
We were pretty astonished today to find that her ANC has shot up to 2400!!! It was 1000 last Thursday so that was some bright happy news. Her other blood work is all up there in a pretty normal range.
I took Cecily and Caleb to their pediatrician, Dr. Bell, today for their 4 and 5 year well checks. It was fun to see Dr. Bell and let him see our little Erin. Dr. Bell was the doctor who first diagnosed Erin with Leukemia. He was the one who gave us the unfortunate phone call that changed our entire world. We are so thankful for Dr. Bell and his staff at Treehouse Pediatrics and all that they have done to help us.
I have spoken personally with three doctors today and it is such a wonderful feeling knowing that we have such amazing professionals taking care of us. I am grateful for those (and their families) who sacrifice their time to help save lives. We are thankful to have a happy and relatively healthy little angel brightening up our home. Erin is such a delight. We like to think of her as a little adult in a tiny body - she is so grown up sounding. It probably comes from living in a hospital being surrounded by so many adults.
She has also started demanding that SHE answer the telephone. So, if you happen to call our house and she answers the phone I hope you enjoy your little conversation with her!
Erin has a clinic appointment Wednesday afternoon to have her doctors look at her and fill us in on their plan of action. John is taking her to that appointment. So . . . we'll see what happens. In the meantime, we are going to enjoy our time here at home!
Erin's Cellulitis sore in her diaper area is looking worse and her CRP (blood test that shows inflammation) has gone from 1.4 last week to 2.6 today. A normal CRP is 0.8. We are very thankful that we didn't start chemo last week because her sore would have been awful and she wouldn't have any immune system to fight it. So . . . here we sit.
Dr. Fluchell called this evening and told us the news. He said that our team of Oncologists and Infectious Disease doctors are going to have a "pow wow" (his words) tomorrow morning on Erin and decide on a new path. She has been on two "bazooka medications" (his words again) Vancomycin and Meropenem for over a month and so they are going to see if there is something even stronger that will work for her.
We were pretty astonished today to find that her ANC has shot up to 2400!!! It was 1000 last Thursday so that was some bright happy news. Her other blood work is all up there in a pretty normal range.
I took Cecily and Caleb to their pediatrician, Dr. Bell, today for their 4 and 5 year well checks. It was fun to see Dr. Bell and let him see our little Erin. Dr. Bell was the doctor who first diagnosed Erin with Leukemia. He was the one who gave us the unfortunate phone call that changed our entire world. We are so thankful for Dr. Bell and his staff at Treehouse Pediatrics and all that they have done to help us.
I have spoken personally with three doctors today and it is such a wonderful feeling knowing that we have such amazing professionals taking care of us. I am grateful for those (and their families) who sacrifice their time to help save lives. We are thankful to have a happy and relatively healthy little angel brightening up our home. Erin is such a delight. We like to think of her as a little adult in a tiny body - she is so grown up sounding. It probably comes from living in a hospital being surrounded by so many adults.
She has also started demanding that SHE answer the telephone. So, if you happen to call our house and she answers the phone I hope you enjoy your little conversation with her!
Erin has a clinic appointment Wednesday afternoon to have her doctors look at her and fill us in on their plan of action. John is taking her to that appointment. So . . . we'll see what happens. In the meantime, we are going to enjoy our time here at home!
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