Thanks, HopeKids and Ellie Tucker who put together such a delightful evening for our kids.
Showing posts with label Broken Bone. Show all posts
Showing posts with label Broken Bone. Show all posts
Tuesday, August 5, 2014
The Royal Ball
HopeKids Utah presented the Royal Ball. We decided to leave the boys with Grampa and Gramma Tec so Lizzy and Emma could enjoy some special time with Mom and Dad. It was a fun evening. The girls got their nails done, their makeup done, and posed for pictures with so many famous royal personalities.
They colored with Rapunzel, a true artist.
They learned some steps to a Scottish dance with Merida. Lizzy broke her arm a week previous and didn't get her cast until the next day, so here she sports the splint and wrap style.
They chatted with Snow Whit and Prince Charming
They discussed Beauty tips with the evil queen and then met Maleficent to discuss magic.
They met Belle and her nameless Prince.
They listened to stories told by Aurora and Phillip.
Lizzy beat Gaston in an arm wrestle, and then he took on both girls at once.
Thanks, HopeKids and Ellie Tucker who put together such a delightful evening for our kids.
Thanks, HopeKids and Ellie Tucker who put together such a delightful evening for our kids.
Friday, July 18, 2014
July with Friends
Once we got Emma home from the hospital,we had some friends come play. We were supposed to camp; but with Emma's ANC so low and her antibiotics needing a fridge and her nurse, Dylan, coming three times a week to check counts and change her port dressing, we stayed home.
Cefapime is a tough antibiotic. The doctor has a term for broad-spectrum drug that will kill everything inside you; but I can't remember it. Home health delivered a bag of little balloons about the size of a tennis ball that are individual pumps with a dose in each. I got to be pretty slick at getting it hooked up or unhooked so I didn't even wake her at night or disturb her from whatever she was playing. I never did manage to do it WHILE she was jumping on the trampoline; but I still feel fairly accomplished.
Her purple cast came off July 9th, and after a few days she was walking normally again. YAY! No more broken bones for Emma!
With slowly recovering counts, Emma had good days and bad days. Repopulating blood is hard, tiring work.
August 21 her ANC reached 500. We quit the Cefapime. All this time, of course, she had no chemotherapy, since the purpose is to depress and control counts.
At her appointment on the 25th, her counts had reached 700. This isn't high enough to continue certain chemotherapy; but we did get instructions to take her dexamethasone. Steroids are hard. By day 5 of the Dex pulse, Emma resembled a dramatic teen with PMS. It has a tendency to completely erode all her personal confidence and bring on serious anxiety.
A week later, Dylan checked counts and her ANC had reached 800. We resumed chemo at the full dose August 1. Emma had very little chemo in July, though plenty of drugs.
And the last photo for July - the Potter Run this year benefited HopeKids, which organizes events for kids with life-threatening medical conditions. Emma's battle with cancer qualifies our family for HopeKids, and we might be Harry Potter nerds. Two great reasons to run a 5K at 6:00 pm on the 31st of July. Two Aunts and and Uncle joined our family and we ran as the Chudley Cannons, Ron Weasley's favorite quidditch team. It was a sell-out event.
Saturday, June 21, 2014
Active Summer Fun
Grandpa and Grandma helped us put jewels and lace on her beautiful purple cast. Emma is busy walking all over that fiberglass foot.
Lizzy got to spend an entire week at Camp Hobe - a super great summer camp for kids with cancer and for their siblings. She LOVED it. She made friends, learned campy camp songs, swam every day, did the ropes course and zip line, and had fun all week. Emma got to attend two days of Day camp the following week, and she LOVED it, too.
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While Lizzy was at camp, we went to the zoo with Grandma and Grandpa Reeder and cousins Lily and Emily.
We have year-long passes to the water park, so we met up with cousins Zoey and Paisley. Emma tromped up the stairs to the waterslides three times. I got tired, and I don't have a cast.
Busy busy busy! All this is going on in Maintenance is awesome.
Lizzy got to spend an entire week at Camp Hobe - a super great summer camp for kids with cancer and for their siblings. She LOVED it. She made friends, learned campy camp songs, swam every day, did the ropes course and zip line, and had fun all week. Emma got to attend two days of Day camp the following week, and she LOVED it, too.
While Lizzy was at camp, we went to the zoo with Grandma and Grandpa Reeder and cousins Lily and Emily.
We have year-long passes to the water park, so we met up with cousins Zoey and Paisley. Emma tromped up the stairs to the waterslides three times. I got tired, and I don't have a cast.
Busy busy busy! All this is going on in Maintenance is awesome.
Monday, June 2, 2014
Friday - the other stuff
On Friday Emma had a big day. I'm going to tell about everything except Maintenance, since that is enough information for its very own post.
Primary Children's Hospital has a lot of wagons, wheelchairs, bikes, trikes, and toddler pedal cars. The bikes, trikes, and pedal cars mostly stay in units. Wagons are used within units for sure; but they get a lot of mileage discharging kids, and there are usually a few wagons near the entrance, as well as wheelchairs.
Since Emma has the broken leg and needs to stay off, we got into the hospital and let her choose the chariot for the day. She chose a red and green wagon. I should have taken a picture at some point; but alas! Daddy took the day off to come to Emma's appointment. He usually comes when she starts a new phase, and he really wanted to be there for the last phase - Maintenance.
BUSTED LEG
In the midst of our normal consultation, a pair of orthopedists, Chris and Zach, came in to take a look at Emma's leg. They trimmed her fiberglass brace down to allow her knee to bend and then re-wrapped. They didn't put a cast on because there is still some swelling from the original injury. She will get a cast on Wednesday; in the meantime, no weight or pressure, and keep it in the brace except when bathing.
COUNTDOWN
We know the end date. Emma will finish treatment November 27, 2015. Barring relapse, that is the day she will ring the bell, signalling the end. I could probably put some ghastly animated gif here to express the excitement of that statement; but I will spare all of us.
LUMBAR PUNCTURE
Yes, the lumbar puncture is part of maintenance. Her last LP was a bit rough. She was really nauseated when she woke up. She threw up a few times and was groggy and grumpy the rest of the day. This Friday, she was nauseated again. The nurses helped her avoid throwing up; but she didn't eat anything or drink anything after.
Because there was so much to do before her scheduled LP (orthopedists, paperwork for study, order correct chemo based on study randomization, explanation of maintenance, port access, etc.) Emma had to go back to clinic to get her chemo after our LP appointment.
She was wrapped in blankets and looking miserable in her wagon. Our superstar oncology nurses were pretty concerned. They found some life savers to help mask the taste of the chemo, saline, and heparin that she was getting through her port.
Becky suggested that we try the sedation for her next LP, so we checked out the Sedation Room. There are the 3 places you can get a LP: Same Day Surgery, Rapid Treatment Unit, and Sedation.
SAME DAY SURGERY
This is the place where all the kids come for surgery, whether to get a cataract removed, an Atrial Septal Defect repaired by the cardiologist, a compound fracture set and pinned, a port placed, dental surgery, and so on. All kinds of things happen here, and the process is set up for major surgery. When she gets an LP in surgery, we register in the waiting room, Emma changes into hospital pajamas, the anesthesiologist takes her at the good-bye door. The doctors are all in scrubs, and the parents wait in the emotional surgery waiting room. It's a bigger deal. The recovery tends to be longer, the anesthesia just a bit heavier, and the kid is groggier. This is where we go if RTU is fully booked.
RAPID TREATMENT UNIT (RTU)
Twenty years ago, the folks at Primary Children's Hospital were looking for a good solution for the large number of kids who needed fairly quick, simple procedures. These are the kinds of procedures that adults probably wouldn't be sedated for. Kids are squirmy, wiggly, and tend to get anxious or apprehensive, though.
A Lumbar Puncture takes less than 15 minutes. In practice, it is a lot like an epidural. The doctor pokes a needle into the spinal column, removes just a bit of cerebral spinal fluid for testing, and then injects some chemotherapy. When it goes slick, the procedure itself can take a minute or two. Five including scrubbing the poke site and putting on a band-aid afterwards.
We take her in and set her on the bed. I hold her hand while the white medicine goes into her tube, and then as she falls asleep, I kiss her on the head and go wait in the hall or maybe grab a sandwich in the cafeteria. It's pretty quick.
I've had epidurals, and I get squirmy for them. It makes sense to sedate a kid briefly; but it doesn't warrant scrubs, hospital jammies, and a sterile operating room. Sterile instruments, obviously, and a clean bright room, sure. The RTU is great for exactly this kind of thing. We love the RTU.
SEDATION
Nurse Becky showed us the sedation room. We have heard of it, and we will do it next time to see if Emma handles it well. Sedation is a slightly large exam room. Our own oncology nurse would administer the appropriate drug that would make Emma sleepy - ever so light and quick. She would be a bit loopy after. Becky says the absolute longest any kid has been out was 15 minutes - usually closer to 5 minutes. Then the doctor would do the LP. Mom and Dad sit in the room and watch the whole thing.
To be a good candidate for Sedation, though, a kid has to be a bit less anxious and a bit tougher, since it isn't complete anesthesia. Our nurses think Emma would probably do just fine, and it's definitely worth a try since anesthesia is beginning to cause nausea, grogginess, and super intense grumpiness.
It will be 3 months until her next LP. That is fine by me, and then we'll have a story about how well it works.
Primary Children's Hospital has a lot of wagons, wheelchairs, bikes, trikes, and toddler pedal cars. The bikes, trikes, and pedal cars mostly stay in units. Wagons are used within units for sure; but they get a lot of mileage discharging kids, and there are usually a few wagons near the entrance, as well as wheelchairs.
Since Emma has the broken leg and needs to stay off, we got into the hospital and let her choose the chariot for the day. She chose a red and green wagon. I should have taken a picture at some point; but alas! Daddy took the day off to come to Emma's appointment. He usually comes when she starts a new phase, and he really wanted to be there for the last phase - Maintenance.
BUSTED LEG
In the midst of our normal consultation, a pair of orthopedists, Chris and Zach, came in to take a look at Emma's leg. They trimmed her fiberglass brace down to allow her knee to bend and then re-wrapped. They didn't put a cast on because there is still some swelling from the original injury. She will get a cast on Wednesday; in the meantime, no weight or pressure, and keep it in the brace except when bathing.
COUNTDOWN
We know the end date. Emma will finish treatment November 27, 2015. Barring relapse, that is the day she will ring the bell, signalling the end. I could probably put some ghastly animated gif here to express the excitement of that statement; but I will spare all of us.
LUMBAR PUNCTURE
Yes, the lumbar puncture is part of maintenance. Her last LP was a bit rough. She was really nauseated when she woke up. She threw up a few times and was groggy and grumpy the rest of the day. This Friday, she was nauseated again. The nurses helped her avoid throwing up; but she didn't eat anything or drink anything after.
Because there was so much to do before her scheduled LP (orthopedists, paperwork for study, order correct chemo based on study randomization, explanation of maintenance, port access, etc.) Emma had to go back to clinic to get her chemo after our LP appointment.
She was wrapped in blankets and looking miserable in her wagon. Our superstar oncology nurses were pretty concerned. They found some life savers to help mask the taste of the chemo, saline, and heparin that she was getting through her port.
Becky suggested that we try the sedation for her next LP, so we checked out the Sedation Room. There are the 3 places you can get a LP: Same Day Surgery, Rapid Treatment Unit, and Sedation.
SAME DAY SURGERY
This is the place where all the kids come for surgery, whether to get a cataract removed, an Atrial Septal Defect repaired by the cardiologist, a compound fracture set and pinned, a port placed, dental surgery, and so on. All kinds of things happen here, and the process is set up for major surgery. When she gets an LP in surgery, we register in the waiting room, Emma changes into hospital pajamas, the anesthesiologist takes her at the good-bye door. The doctors are all in scrubs, and the parents wait in the emotional surgery waiting room. It's a bigger deal. The recovery tends to be longer, the anesthesia just a bit heavier, and the kid is groggier. This is where we go if RTU is fully booked.
RAPID TREATMENT UNIT (RTU)
Twenty years ago, the folks at Primary Children's Hospital were looking for a good solution for the large number of kids who needed fairly quick, simple procedures. These are the kinds of procedures that adults probably wouldn't be sedated for. Kids are squirmy, wiggly, and tend to get anxious or apprehensive, though.
A Lumbar Puncture takes less than 15 minutes. In practice, it is a lot like an epidural. The doctor pokes a needle into the spinal column, removes just a bit of cerebral spinal fluid for testing, and then injects some chemotherapy. When it goes slick, the procedure itself can take a minute or two. Five including scrubbing the poke site and putting on a band-aid afterwards.
We take her in and set her on the bed. I hold her hand while the white medicine goes into her tube, and then as she falls asleep, I kiss her on the head and go wait in the hall or maybe grab a sandwich in the cafeteria. It's pretty quick.
I've had epidurals, and I get squirmy for them. It makes sense to sedate a kid briefly; but it doesn't warrant scrubs, hospital jammies, and a sterile operating room. Sterile instruments, obviously, and a clean bright room, sure. The RTU is great for exactly this kind of thing. We love the RTU.
SEDATION
Nurse Becky showed us the sedation room. We have heard of it, and we will do it next time to see if Emma handles it well. Sedation is a slightly large exam room. Our own oncology nurse would administer the appropriate drug that would make Emma sleepy - ever so light and quick. She would be a bit loopy after. Becky says the absolute longest any kid has been out was 15 minutes - usually closer to 5 minutes. Then the doctor would do the LP. Mom and Dad sit in the room and watch the whole thing.
To be a good candidate for Sedation, though, a kid has to be a bit less anxious and a bit tougher, since it isn't complete anesthesia. Our nurses think Emma would probably do just fine, and it's definitely worth a try since anesthesia is beginning to cause nausea, grogginess, and super intense grumpiness.
It will be 3 months until her next LP. That is fine by me, and then we'll have a story about how well it works.
Thursday, May 29, 2014
Busted -- Again
Seriously?
Seriously.
The month has been fairly uneventful for Emma as far as cancer is concerned. She finished the second round of interim maintenance like a super star. Her hair is coming in like soft baby fluff.
Earlier today she got a blood draw and her counts are good enough to start maintenance tomorrow. It will be a pretty big day... we'll learn which track of the study she will be on. That determines the dosing and timing of her chemo over the next couple years.
This afternoon, though, Emma broke her leg.
She was playing, put her right foot into the recliner between the footrest and seat, then stepped on the footrest and put it down on her own leg, fell over onto it adding pressure, and, well...
Screaming ensued. Emma hasn't really reacted to pain much since cancer; she just gets along with stuff that she can handle in a way that is atypical for a 5-year old. The screaming didn't go away and sounded hurt, rather than offended. I was pretty quick to decide on a visit to the after hours kid care where they are beginning to recognize us. The x-ray shows a busted tibia.
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She came home with a splint. Tomorrow while we are already at Primary Children's for clinic and a lumbar puncture, we'll see the orthopedist as well.
And here is another great picture of Emma's photo shoot in February because she's so stinkin' cute.
Seriously.
The month has been fairly uneventful for Emma as far as cancer is concerned. She finished the second round of interim maintenance like a super star. Her hair is coming in like soft baby fluff.
Earlier today she got a blood draw and her counts are good enough to start maintenance tomorrow. It will be a pretty big day... we'll learn which track of the study she will be on. That determines the dosing and timing of her chemo over the next couple years.
This afternoon, though, Emma broke her leg.
She was playing, put her right foot into the recliner between the footrest and seat, then stepped on the footrest and put it down on her own leg, fell over onto it adding pressure, and, well...
Screaming ensued. Emma hasn't really reacted to pain much since cancer; she just gets along with stuff that she can handle in a way that is atypical for a 5-year old. The screaming didn't go away and sounded hurt, rather than offended. I was pretty quick to decide on a visit to the after hours kid care where they are beginning to recognize us. The x-ray shows a busted tibia.
She came home with a splint. Tomorrow while we are already at Primary Children's for clinic and a lumbar puncture, we'll see the orthopedist as well.
And here is another great picture of Emma's photo shoot in February because she's so stinkin' cute.
Wednesday, April 30, 2014
Tales of a Broken Arm
Emma started out with a bright pink cast after she broke her arm in April. It was cute and she had people sign it. After a few days, it started to annoy her.
It was the night of the hockey game when we were getting ready to go that Emma slipped her cast off. The next day we got a replacement cast - this time a purple cast that went up over Emma's elbow so that she could not get it off.
Also, a picture of Emma's Bricks of Hope. So many cancer families start nonprofits in honor of their children. Bricks of Hope collects Lego and Mega Block and other building brick toys each year, and they donate them to the cancer patients. Emma got a box big enough to share with her sister and brothers. In this photo, the castle is a hospital and all the little lego people are constructed without their hair... because obviously they have cancer. The girls' idea, not mine.
Hey look, a great photo of three of my kids. After church on Easter. Emma in cast and with Kitty Cat ears. Yes that's how she went to church. This was just about her first showing after a winter of not attending much. It sure is nice to go all together again. By nice, of course, I don't mean relaxing.
Emma's picture for a slideshow supporting a hike for cancer.
And just after the cast came off her arm. Hey-Presto! All the best of the broken arm photo coverage.
It was the night of the hockey game when we were getting ready to go that Emma slipped her cast off. The next day we got a replacement cast - this time a purple cast that went up over Emma's elbow so that she could not get it off.
Also, a picture of Emma's Bricks of Hope. So many cancer families start nonprofits in honor of their children. Bricks of Hope collects Lego and Mega Block and other building brick toys each year, and they donate them to the cancer patients. Emma got a box big enough to share with her sister and brothers. In this photo, the castle is a hospital and all the little lego people are constructed without their hair... because obviously they have cancer. The girls' idea, not mine.
Hey look, a great photo of three of my kids. After church on Easter. Emma in cast and with Kitty Cat ears. Yes that's how she went to church. This was just about her first showing after a winter of not attending much. It sure is nice to go all together again. By nice, of course, I don't mean relaxing.
Emma's picture for a slideshow supporting a hike for cancer.
And just after the cast came off her arm. Hey-Presto! All the best of the broken arm photo coverage.
Monday, April 7, 2014
Busted
Emma broke her arm this weekend. Hairline fracture on both forearm bones of her left hand near the wrist. It isn't a growth plate or a compound fracture. It would heal fine without a cast if she would avoid straining and pressuring it while it is healing; but she is 5. It gets a cast.
Also, here's a great picture of Emma. A friend suggested we get some professional photos done when she lost her hair, and I may start dropping those in from time to time.
Emma started Interim Maintenance part 2 on Tuesday. She had a lumbar puncture with some intrathecal methotrexate, and she had some I.V. Vincristine. We go back Friday for an increased dose. Interim Maintenance 2 is similar to IM1 in that they accelerate the dose until we reach her highest tolerance level or until we hit day 57.
Each dose will be count dependent, therefore, to determine if she is reaching her tolerance levels for the drugs.
Also, here's a great picture of Emma. A friend suggested we get some professional photos done when she lost her hair, and I may start dropping those in from time to time.
Emma started Interim Maintenance part 2 on Tuesday. She had a lumbar puncture with some intrathecal methotrexate, and she had some I.V. Vincristine. We go back Friday for an increased dose. Interim Maintenance 2 is similar to IM1 in that they accelerate the dose until we reach her highest tolerance level or until we hit day 57.
Each dose will be count dependent, therefore, to determine if she is reaching her tolerance levels for the drugs.
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