Erin has been at Primary Children's for round #4 for 2 weeks now. Her ANC (immune fighter white blood cells) has been at zero for 6 days. At midnight we checked her line repair and flushed one of the lines, it worked like a charm. Her other line however wouldn't flush. The nurse did a TPA, which breaks down any clots in her line, and by 4am her second line flushed just fine.
Her blood cultures today have come back negative for infection. Yeah! I hope it continues to stay that way. She still has a clear runny nose and a cough, probably from the rhinovirus which is basically a common cold. She hasn't had a fever since last night, and even then it wasn't high enough to give her Tylenol for. Despite being woken up several times in the night, she woke up really happy. We've had a great day together. We have snuggled and played starfall.com on the computer. We have watched Barney goes to school 3 times and the Care Bears 2 times. We put up some fall window clings on the big window in our room. It is such a joy to be here with Erin, she is such a sweetie and there is a wonderful peaceful feeling in her room. Her Heavenly Father loves her.
Thursday, September 30, 2010
Wednesday, September 29, 2010
Busy Times & Line Repair
Things have been busy. I apologize that there haven't been updates on Erin's progress in the last two days. I have been having a hard time finding time to write. It seems that the three days that John and I are home together I just cram every minute with all the things I need to do for the entire week. I really appreciate all of you who have brought in meals. Seriously, just eliminating the time to cook has give me more time to accomplish other things. Thank you!
Erin is doing better. The blood work drawn today from her central line showed no sign of infection. That is good! Hooray! The sores on the top of her head are also looking much better. My mom took great care of Erin for the past 3 days. Her hospital room is nicely decorated with some window cling pumpkins and some streamers lining the cork board. I made a big crawly spider in the parent break last Friday and it's stuck on the door by the window to scare away infectious things. I also brought some window clings with me of fall leaves to put up tomorrow.
Erin is currently taking a few medications through her IV. She is taking Vancomycin (antibiotic) Fortaz (antibiotic), and Caspofungin (anti-fungal). She is still taking Septra on Mondays and Tuesdays to prevent pneumonia. She will take Septra until a few months after she is done with her 5 rounds of chemo. She is taking Claritin orally before she goes to bed to alleviate her slightly runny nose so that she can sleep better.
Tonight was a bit of a scare. My mom and the nurse found some blood on the floor and blood all over Erin's top and they realized that her central line had broken. Again. The tube was just hanging on by a little thread of tubing. This makes the 6th time her line has been repaired. The nurse clamped her line. They had to take the dressing off of her central line, the head nurse repaired the line, then our nurse put on a new dressing and now Erin is asleep. It wasn't as easy as it sounds though, because Erin was kicking and screaming through it all. The nurse had to cut the tube off where the two tubes come together. We have to wait 4 hours before we can make sure that her line is working. So, at midnight the nurse will check her line and then we can start up all her medications again since they can't run through her line during the 4 hour break while the glue on the line dries.
Oh well, things are hard sometimes. I have set myself up to expect that things will happen so it doesn't get me too down when something bad does happen. Hopefully we only have less than 2 months left of this and hopefully her line won't need to be repaired too many more times. The more they repair it, the higher they have to repair it. Eventually they sometimes have to just take the line out and surgically put in a new line.
John's dad was scheduled for open heart surgery today (his second one) in Las Vegas, Nevada, but there was a hang up that two of the suction machines weren't working so the surgeon re-scheduled the surgery for Friday. His father was in the pre-op room when he found out that they were going to postpone his surgery. Please send prayers to the Hughes family for John's dad to have a successful surgery.
Erin is doing better. The blood work drawn today from her central line showed no sign of infection. That is good! Hooray! The sores on the top of her head are also looking much better. My mom took great care of Erin for the past 3 days. Her hospital room is nicely decorated with some window cling pumpkins and some streamers lining the cork board. I made a big crawly spider in the parent break last Friday and it's stuck on the door by the window to scare away infectious things. I also brought some window clings with me of fall leaves to put up tomorrow.
Erin is currently taking a few medications through her IV. She is taking Vancomycin (antibiotic) Fortaz (antibiotic), and Caspofungin (anti-fungal). She is still taking Septra on Mondays and Tuesdays to prevent pneumonia. She will take Septra until a few months after she is done with her 5 rounds of chemo. She is taking Claritin orally before she goes to bed to alleviate her slightly runny nose so that she can sleep better.
Tonight was a bit of a scare. My mom and the nurse found some blood on the floor and blood all over Erin's top and they realized that her central line had broken. Again. The tube was just hanging on by a little thread of tubing. This makes the 6th time her line has been repaired. The nurse clamped her line. They had to take the dressing off of her central line, the head nurse repaired the line, then our nurse put on a new dressing and now Erin is asleep. It wasn't as easy as it sounds though, because Erin was kicking and screaming through it all. The nurse had to cut the tube off where the two tubes come together. We have to wait 4 hours before we can make sure that her line is working. So, at midnight the nurse will check her line and then we can start up all her medications again since they can't run through her line during the 4 hour break while the glue on the line dries.
Oh well, things are hard sometimes. I have set myself up to expect that things will happen so it doesn't get me too down when something bad does happen. Hopefully we only have less than 2 months left of this and hopefully her line won't need to be repaired too many more times. The more they repair it, the higher they have to repair it. Eventually they sometimes have to just take the line out and surgically put in a new line.
John's dad was scheduled for open heart surgery today (his second one) in Las Vegas, Nevada, but there was a hang up that two of the suction machines weren't working so the surgeon re-scheduled the surgery for Friday. His father was in the pre-op room when he found out that they were going to postpone his surgery. Please send prayers to the Hughes family for John's dad to have a successful surgery.
Monday, September 27, 2010
Halloween Decorating
Erin has an infection somewhere in her body. The blood drawn from both of her lines yesterday came back as showing infection. She had a little fever yesterday, but it didn't get higher than 101 degrees F. She had a little fever in the night, but from what I know she hasn't had anymore. We aren't sure where the infection is, it could even be the little sores on the top of her bald head. She is on the Vancomycin (antibiotic) and hopefully that will help her get better soon. She's still in really good spirits, she's not as sick as she has been in the past. Her ANC is still zero and we expect it to stay at zero for 2 weeks or more.
Tonight we decorated our house with our Halloween decorations. Halloween in my favorite holiday, I know that may sound strange, but I just love dressing up and I love the spooky decorations and things. Cecily & Caleb are really excited about Halloween and they could hardly contain themselves while we put the decorations up.
It always seems to be the hardest having Erin gone when John and I are together in our house without her. All day I've been expecting to hear her little sweet voice come around the corner. There is an empty place in my heart when she is not here. It's so lonely without her, even when there's commotion going on. I really really really want her to be home for Halloween so that she can go trick-or-treating. I just really want that. I want her to be able to have a normal childhood experience, especially one that I love so much.
Tonight we decorated our house with our Halloween decorations. Halloween in my favorite holiday, I know that may sound strange, but I just love dressing up and I love the spooky decorations and things. Cecily & Caleb are really excited about Halloween and they could hardly contain themselves while we put the decorations up.
It always seems to be the hardest having Erin gone when John and I are together in our house without her. All day I've been expecting to hear her little sweet voice come around the corner. There is an empty place in my heart when she is not here. It's so lonely without her, even when there's commotion going on. I really really really want her to be home for Halloween so that she can go trick-or-treating. I just really want that. I want her to be able to have a normal childhood experience, especially one that I love so much.
Sunday, September 26, 2010
What is ANC?
Absolute neutrophil count (ANC): The real number of white blood cells (WBCs) that are neutrophils. The absolute neutrophil count is commonly called the ANC.
The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).
Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.
In practical clinical terms, a normal ANC is 1500 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500.
(Information was borrowed from medterms.com)
The ANC is not measured directly. It is derived by multiplying the WBC count times the percent of neutrophils in the differential WBC count. The percent of neutrophils consists of the segmented (fully mature) neutrophils) + the bands (almost mature neutrophils). The normal range for the ANC = 1.5 to 8.0 (1,500 to 8,000/mm3).
Neutrophils are key components in the system of defense against infection. An absence or scarcity of neutrophils (a condition called neutropenia) makes a person vulnerable to infection. After chemotherapy, radiation, or a blood or marrow transplant, the ANC is usually depressed and then slowly rises, reflecting the fact that the bone marrow is recovering and new blood cells are beginning to grow and mature.
In practical clinical terms, a normal ANC is 1500 or higher; a "safe" ANC is 500-1500; a low ANC is less than 500.
(Information was borrowed from medterms.com)
Saturday, September 25, 2010
Adding it all up
For some reason I like numbers. I'm not really good at adding things up in my head, but I like orderly things and I like to line things up. I like to chart things and keep track of things. Maybe that's why I have been keeping a little list of our stats. I thought I'd share some of them with you. It's sobering thinking about how much effort everyone has given to help us get to where we are.
As of September 25th
117 days since diagnosis
86 days at Primary Children's
29 days of IV Chemotherapy
Her ANC has been zero for 37 days
5 Central line repairs
3 EKGs
5 CT Scans
4 Bone Marrow Aspirations
4 Spinal Taps
9 Blood transfusions
8 Platelet transfusions
Highest Fever: 104.3 F (40.3 C)
22 different medications
22 different medications
Biggest insurance claim: $102,312.39
Smallest insurance claim: $0.30
Insurance statements I have filed away: 134
Weekend Pictures
Lately it's been hard to get a picture of Erin holding still. When she sees me with the camera in hand she comes running, "let me see, let me see." She is so into seeing herself on the screen after I take a picture, but lately I barely can get in a picture before she's too close.
Wearing her new Tinkerbell sunglasses. Thanks Steele Family!
She has started hauling these drawers around so she can climb up to things. Like I've said before, the hospital beds need to come with monkey bars and a slide. I would also add, a ladder.
Perched in her cuteness.
Playing www.starfall.com on the laptop. She really enjoys picking an alphabet letter to play around with. She also loves her new starry cape and stunning silver dress complete with snaps on the shoulders so that it is easier to dress and undress when her tubes are hooked up. A special thanks to Lynette Olson for making her this beautiful new dress-up. I love her cheesy grin in this picture.
"I can get to the camera before you can take my picture!"
A beautiful bald head. Really, she has a beautifully shaped head.
This one is my favorite.
Taking pictures together!
Friday, September 24, 2010
Stats
Erin's ANC dropped from 1500 on Wednesday to 100 today. Crazy!
Her red blood is down to 22 so she is going to get a transfusion today.
Despite her way low counts she is wiggling and giggling and all over the place. Right now she's dancing to the "red man" song on Peter Pan. This movie would have parents banning it if it was made today (those mermaids are pretty risque too). Erin would do even better today if her hospital bed had monkey bars and a slide.
She just came over to me and this is what she said, "it's my computer. Hey mommy, no no no. Come on, come on. 1, 2, 3. My computer. 1, 2, 3. 1 oreo, 2 oreo, eat eat eat. Eat eat eat a cookie (sing songy voice)." Then she went to her phone, picked it up and listed off "cheese, oreos, sandwich. Goodbye." Maybe she's ready for lunch. I'll have to let her order her own lunch today since she seems pretty capable to list food off into the phone receiver. Now she's rolling on my foam mat and saying, "look at me. Ahhhhh, I'm falling." She is such a ham.
Her red blood is down to 22 so she is going to get a transfusion today.
Despite her way low counts she is wiggling and giggling and all over the place. Right now she's dancing to the "red man" song on Peter Pan. This movie would have parents banning it if it was made today (those mermaids are pretty risque too). Erin would do even better today if her hospital bed had monkey bars and a slide.
She just came over to me and this is what she said, "it's my computer. Hey mommy, no no no. Come on, come on. 1, 2, 3. My computer. 1, 2, 3. 1 oreo, 2 oreo, eat eat eat. Eat eat eat a cookie (sing songy voice)." Then she went to her phone, picked it up and listed off "cheese, oreos, sandwich. Goodbye." Maybe she's ready for lunch. I'll have to let her order her own lunch today since she seems pretty capable to list food off into the phone receiver. Now she's rolling on my foam mat and saying, "look at me. Ahhhhh, I'm falling." She is such a ham.
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