We were able to go into clinic today early (9am but traffic was slow EVERYWHERE so we were late) instead of 1pm which was sooo nice!! We were the only ones there for almost an hour. Maggie got Haylee going about 9:40 then she got started on some school work. Tracey came by about 10:15 and scooped her up to go into the school room to work where she could concentrate more.
Haylee went into the bathroom today and said that when she sat down, it hurt her stomach to pee. It only hurt when she was in the bathroom - no other time. She said it didn't burn or anything like a UTI so Maggie got a specimen from her to have checked out. She said she would call me if she heard anything about it. No call so far - no news is good news. I'll follow up with Maggie tomorrow.
The clowns came by today and made me laugh while Haylee was at school. She made it back in time to interact with 1 of them. He was dressed up as a dog and really got Haylee laughing. They're pretty funny. They make the kids' clinic days a little more bearable when they visit.
Hopefully Maggie will call us in the morning to fill in a cancellation. We aren't supposed to be there until 3pm.... :(
~Hope for Haylee~
January 31, 2012
January 30, 2012
1/30/12 - Happy Monday to all!
Traffic was lighter than I was expecting but still...we got there on 2 wheels! Ok, not literally but right on time. EKG was this morning and our technician is the one we have every week. He is fabulous!! He keeps me and Haylee entertained (like both of us laughing out loud) and he's so good with her. He makes the EKG experience a good one.
Clinic went by faster than it usually does. Usually, we have to wait for hours on the blood chemistry to come back because they have to send it downstairs. The counts come back super fast. Today, the chemistry came back within an hour. When the nurse went to draw her labs, she couldn't get a blood return on either line at first and finally on her yellow line. That scared me at first because she's always had good blood returns before. The doctor and Maggie both said it can happen from time to time and they would just make sure to hep lock her with 5 mL instead of 3 mL for a few days and check it more often. The doctor said her counts and chemistry were good and the EKG came back fine, too. I started asking about Consolidations 2 - 4 and how long we would be inpatient. She said that after the 2nd arsenic cycle was over, she would be inpatient the following week for Consolidation 2 and as soon as her counts recovered, she could possibly do 3 & 4 as an outpatient. That was so exciting to hear!! I thought we would be inpatient for months. Typically, counts recover in 3-4 weeks (every child is different so it'll be give or take). She will have to have another EKG and bone marrow aspiration before she starts the 2nd arsenic cycle and that'll be scheduled sometime during the 2 weeks off. At least we won't be driving down there every day - just a few days during our time off.
We were set up in the infusion room by 11:30 and started infusion by 12:00. Haylee was able to get an hour in at school, too. We were scheduled for 1pm tomorrow but they had a cancellation and now we are scheduled at 9am! So excited :)
I was going to let her go to school on Wednesday since we are due in at clinic at 3pm but the assistant principal emailed me and said Fifth's Disease is going around the school. Dr. Keller said to hold off until Monday.
WBC - 8240
Platelets - 479,000
HGB - 12.4
ANC - 2730
Clinic went by faster than it usually does. Usually, we have to wait for hours on the blood chemistry to come back because they have to send it downstairs. The counts come back super fast. Today, the chemistry came back within an hour. When the nurse went to draw her labs, she couldn't get a blood return on either line at first and finally on her yellow line. That scared me at first because she's always had good blood returns before. The doctor and Maggie both said it can happen from time to time and they would just make sure to hep lock her with 5 mL instead of 3 mL for a few days and check it more often. The doctor said her counts and chemistry were good and the EKG came back fine, too. I started asking about Consolidations 2 - 4 and how long we would be inpatient. She said that after the 2nd arsenic cycle was over, she would be inpatient the following week for Consolidation 2 and as soon as her counts recovered, she could possibly do 3 & 4 as an outpatient. That was so exciting to hear!! I thought we would be inpatient for months. Typically, counts recover in 3-4 weeks (every child is different so it'll be give or take). She will have to have another EKG and bone marrow aspiration before she starts the 2nd arsenic cycle and that'll be scheduled sometime during the 2 weeks off. At least we won't be driving down there every day - just a few days during our time off.
We were set up in the infusion room by 11:30 and started infusion by 12:00. Haylee was able to get an hour in at school, too. We were scheduled for 1pm tomorrow but they had a cancellation and now we are scheduled at 9am! So excited :)
I was going to let her go to school on Wednesday since we are due in at clinic at 3pm but the assistant principal emailed me and said Fifth's Disease is going around the school. Dr. Keller said to hold off until Monday.
WBC - 8240
Platelets - 479,000
HGB - 12.4
ANC - 2730
January 29, 2012
1/28-1/29/12 - The Weekend
Haylee and I were so glad that we were able to have 2 days off from the hospital!!! We only have 1 week left and she's off for 2 weeks (and back to work and school).
Adam's mom and a friend of hers came for a visit this weekend. They were at our house when we got home from the hospital. The kids were excited to see her! We went to the mall on Saturday and did a little clothes shopping for the kids and then went to Build A Bear so they could get a stuffy. What a crazy time! The kids loved it though. Haylee got a blue bear and dressed her up in Victorious clothes and Mason got a brown puppy and dressed him up as Spiderman - he kept saying, "I have a SpiderDog!". My parents came over and we all ate pizza for dinner and visited together. Mason and I were so tired that we passed out at 9pm. I'm not sure when Haylee went to bed!
I had to grocery shop (which is no fun) so after that we had a lazy Sunday afternoon. Gotta love those days!!
Back to our normal routine on Monday morning - EKG, PE, and clinic. A week from tomorrow we're done for 2 weeks!! So excited!!
Adam's mom and a friend of hers came for a visit this weekend. They were at our house when we got home from the hospital. The kids were excited to see her! We went to the mall on Saturday and did a little clothes shopping for the kids and then went to Build A Bear so they could get a stuffy. What a crazy time! The kids loved it though. Haylee got a blue bear and dressed her up in Victorious clothes and Mason got a brown puppy and dressed him up as Spiderman - he kept saying, "I have a SpiderDog!". My parents came over and we all ate pizza for dinner and visited together. Mason and I were so tired that we passed out at 9pm. I'm not sure when Haylee went to bed!
I had to grocery shop (which is no fun) so after that we had a lazy Sunday afternoon. Gotta love those days!!
Back to our normal routine on Monday morning - EKG, PE, and clinic. A week from tomorrow we're done for 2 weeks!! So excited!!
1/27/12 - Another good day
Haylee had another good day of infusion. Infusion days with nothing else planned go so much faster than days with other things involved. We were outta there by 1pm again! Maggie doesn't like for us to be there all day and does what she can to get us out as fast as she can. Haylee got the rest of her school work done at the hospital and finished up the rest with her homebound teacher in the afternoon.
Have a great weekend!!
Have a great weekend!!
January 26, 2012
1/26/12 - A short day...a better day :)
Infusion only today!!! We got there just before 10:30 and was hooked up by 11am. Maggie, Trish, and Shaun were giving us a hard time because we were the last ones there yesterday and were early this morning (they were saying 'didn't you just leave?' and 'glad ya'll are early today!'). They're great...we love them!! They're good with Haylee and always make her feel like she's welcome and 'normal'. They never draw attention to her illness at all. They treat her like a kid, which is what she needs.
Haylee had school during infusion and the homebound teacher came to our house today. She got a good bit of work done today. She has just a little left to do for this week and then she can relax for the weekend.
It was a much better day today and so glad for that!!
Haylee had school during infusion and the homebound teacher came to our house today. She got a good bit of work done today. She has just a little left to do for this week and then she can relax for the weekend.
It was a much better day today and so glad for that!!
January 25, 2012
1/25/12 - So what did the eye doctor say? And what were the MRI/spinal tap results??
What a day, what a day!! Today had to be the longest day Haylee and I have had thus far. Her MRI was scheduled for 8am and we signed in for the MRI at...8am on the nose. We were taken back shortly after and set up to get ready for the test. At 8:30, we were told they were already backed up and it would be a while before she had the test done. I don't understand the happenings of a hospital but what on earth could have been going on before 8am?! By 9:30, they were ready to take her back. They gave her the Propofol and she was out within seconds. I went upstairs to get her a bagel with cream cheese since she couldn't have anything to eat after 3am this morning and no fluids after 7am (she had eyed a bagel on our way down to MRI). I had a small bowl of grits while I waited (I wasn't going to eat in front of her!). By 10:15, Haylee was out of the MRI but had her spinal tap done shortly after. I was able to go back in her room with her and her nurse, Lisa, left her under the Propofol while her back recovered from the spinal tap for 30 minutes. At 10:45, she was taken off the Propofol and she was awake within 10 minutes. She was a little wobbly at first but she found her legs and off we went to the Emory Eye Clinic.
Haylee's eye appointment was at 9:10 but since the MRI and spinal tap was running behind, they worked her in. We got to walk the infamous 'tunnel' from Egleston to Emory. It was more like a hallway and not nearly as long as people said it was. We got there at 11:15ish and after we checked in, it was 12:30 before we were called back. She had about 3 different people give her different exams, 1 person take color photos of her eyes, and 1 person take an ultrasound of her eyes. After everything was all done, Dr. Hubbard finally came in and looked her over (at this point it was after 3pm....). He really couldn't give me any answers other than he wants her to see an optic nerve specialist (yes, there is such a thing) and he wants to see her back in a month. When I asked what could cause her optic nerves to swell like that, he said that it was possible the chemo she's been on could have been a culprit.
We finally got over to infusion at 3:30pm (they were calling wondering where we were!). We got started about 3:45. Dr. Abdella came by and went over the findings with me. The MRI and spinal tap results came back normal but they think she is developing something called 'pseudo-tumor-celebri'. It means "fake tumor in the head". She DOES NOT have a tumor, nor will she develop one. I repeat, she DOES NOT have a tumor in her head or anywhere for that matter. Basically, what it means is that Haylee's has developed the symptoms of a tumor in her head but without the tumor. It's like when a woman's body develops pregnancy symptoms but isn't pregnant. They think the ATRA is causing it all. Dr. Abdella said she found documentation where this has happened. Since she has been off the ATRA since January 16 and will not go back on it until February 20, they think they will be able to find out for sure if it really is the ATRA. She has an appointment on February 7 and should see Dr. Hubbard again before the 20th. If the swelling goes down on its own from now until the 7th and then again at the next appointment, then the ATRA is the problem. If not, well I don't know! If it turns out it's the ATRA, a few things can happen. 1 - they could decrease the dosage of the ATRA by no more than 25%. 2 - they could do spinal taps to keep relieving pressure while she's on ATRA. 3 - they could give her a medication to reduce the pressure and give the regular dose of ATRA. The ATRA is a HUGE part of the treatment for this particular leukemia so it is a necessity; we just have to figure out what to do and the eye doctors are the ones to tell the next step for the next cycle. She is scheduled for another spinal tap next week to relive some pressure in her head. Haylee is in good spirits, handling everything SO well. She's not having headaches or pain anywhere. What can I say...she's a ROCKSTAR!!!
On a very good note: she does not have leukemia in her eyes nor does she have an infection or a fungus. Since her spinal tap came back normal, it also most likely means she does not have leukemia in her spinal cord or fluid :)
Haylee's eye appointment was at 9:10 but since the MRI and spinal tap was running behind, they worked her in. We got to walk the infamous 'tunnel' from Egleston to Emory. It was more like a hallway and not nearly as long as people said it was. We got there at 11:15ish and after we checked in, it was 12:30 before we were called back. She had about 3 different people give her different exams, 1 person take color photos of her eyes, and 1 person take an ultrasound of her eyes. After everything was all done, Dr. Hubbard finally came in and looked her over (at this point it was after 3pm....). He really couldn't give me any answers other than he wants her to see an optic nerve specialist (yes, there is such a thing) and he wants to see her back in a month. When I asked what could cause her optic nerves to swell like that, he said that it was possible the chemo she's been on could have been a culprit.
We finally got over to infusion at 3:30pm (they were calling wondering where we were!). We got started about 3:45. Dr. Abdella came by and went over the findings with me. The MRI and spinal tap results came back normal but they think she is developing something called 'pseudo-tumor-celebri'. It means "fake tumor in the head". She DOES NOT have a tumor, nor will she develop one. I repeat, she DOES NOT have a tumor in her head or anywhere for that matter. Basically, what it means is that Haylee's has developed the symptoms of a tumor in her head but without the tumor. It's like when a woman's body develops pregnancy symptoms but isn't pregnant. They think the ATRA is causing it all. Dr. Abdella said she found documentation where this has happened. Since she has been off the ATRA since January 16 and will not go back on it until February 20, they think they will be able to find out for sure if it really is the ATRA. She has an appointment on February 7 and should see Dr. Hubbard again before the 20th. If the swelling goes down on its own from now until the 7th and then again at the next appointment, then the ATRA is the problem. If not, well I don't know! If it turns out it's the ATRA, a few things can happen. 1 - they could decrease the dosage of the ATRA by no more than 25%. 2 - they could do spinal taps to keep relieving pressure while she's on ATRA. 3 - they could give her a medication to reduce the pressure and give the regular dose of ATRA. The ATRA is a HUGE part of the treatment for this particular leukemia so it is a necessity; we just have to figure out what to do and the eye doctors are the ones to tell the next step for the next cycle. She is scheduled for another spinal tap next week to relive some pressure in her head. Haylee is in good spirits, handling everything SO well. She's not having headaches or pain anywhere. What can I say...she's a ROCKSTAR!!!
On a very good note: she does not have leukemia in her eyes nor does she have an infection or a fungus. Since her spinal tap came back normal, it also most likely means she does not have leukemia in her spinal cord or fluid :)
January 24, 2012
1/24/12 - She got 'salty' with Maggie...LOL
Haylee has been waking me up in the wee hours of the morning the past few days complaining about her line dressing itching so I checked it out today and it looked a little funny to me, like yellow and crusty? Something like that.
We got to the hospital early to see if we could get started with infusion early and to have the dressing looked at. Maggie went ahead and took us early since they had 1 chair left open. I had Maggie take a look at her dressing and she suggested it be changed and she would get one of the doctors in to look at it while the dressing was off. Maggie rounded us up a dressing kit and once I got it off, she called in one of the doctors to look. The doctor said it looked normal to her but if it continued to do that or the antibiotic patch was soaked through, they would have to look into what to do to fix it. Hopefully its just from her constant itching that's irritating it and making it crusty and nothing else!!
I sent Haylee off to school after getting hooked up and the dressing change. Maggie saw her in the school room itching her dressing and told her to try not to itch the site and to just pat it instead. Maggie said that Haylee cut her eyes at her. Then when Maggie asked to look at it to make sure the rash wasn't spreading, she said that Haylee said, "NO!" and jerked her body around away from her. Maggie came in our room and told me about it and said, "She got salty with me!" and laughed about it. She came back in to flush Haylee's line later and apologized for making her mad and explained to her the importance of patting and not itching. Haylee smiled at her and they were friends again. We love Maggie :)
We practiced her multiplication tables using flash cards that Tracey and Jami (the school teachers) let us borrow for a week. She knows them pretty well, but not fluent enough. We're working on that.
After Haylee had a bath tonight, she pulled out another tooth. She just pulled a tooth out last week!! If she keeps it up then she won't have any teeth left and the Tooth Fairy will go broke!! LOL!!
MRI, spinal tap, infusion, and eye doctor tomorrow...gonna be a long day!
We got to the hospital early to see if we could get started with infusion early and to have the dressing looked at. Maggie went ahead and took us early since they had 1 chair left open. I had Maggie take a look at her dressing and she suggested it be changed and she would get one of the doctors in to look at it while the dressing was off. Maggie rounded us up a dressing kit and once I got it off, she called in one of the doctors to look. The doctor said it looked normal to her but if it continued to do that or the antibiotic patch was soaked through, they would have to look into what to do to fix it. Hopefully its just from her constant itching that's irritating it and making it crusty and nothing else!!
I sent Haylee off to school after getting hooked up and the dressing change. Maggie saw her in the school room itching her dressing and told her to try not to itch the site and to just pat it instead. Maggie said that Haylee cut her eyes at her. Then when Maggie asked to look at it to make sure the rash wasn't spreading, she said that Haylee said, "NO!" and jerked her body around away from her. Maggie came in our room and told me about it and said, "She got salty with me!" and laughed about it. She came back in to flush Haylee's line later and apologized for making her mad and explained to her the importance of patting and not itching. Haylee smiled at her and they were friends again. We love Maggie :)
We practiced her multiplication tables using flash cards that Tracey and Jami (the school teachers) let us borrow for a week. She knows them pretty well, but not fluent enough. We're working on that.
After Haylee had a bath tonight, she pulled out another tooth. She just pulled a tooth out last week!! If she keeps it up then she won't have any teeth left and the Tooth Fairy will go broke!! LOL!!
MRI, spinal tap, infusion, and eye doctor tomorrow...gonna be a long day!
January 23, 2012
1/23/12 - Yay! No more Saturday treatments...M-F from here on out!
Oh, how I despise Atlanta traffic in the rain!!! We left our house this morning at 7:45 thinking that we would arrive on time (if not before) for our 9am EKG appointment. Would you know that we were 10 minutes late?? When it rains, people forget how to drive. And if they see blue lights stopped on the side of the road...forget about it! Everyone slams on the brakes. On the bright side, we get our weekends back :)
The EKG went off without incident this morning. We arrived before our 9:45 physical appointment and Haylee was triaged in within about 15 minutes but they didn't have any Leuk/Lymph rooms available so we had to go back into the waiting room. An hour later we were put in a room. Haylee was able to go into the school room and get a head start on her schoolwork for this week since we were waiting for so long. She had her labs drawn, had her PE with Stacy (1 of the 4 doctors she sees in outpatient), and back to school she went while we waited for labs to come back.
I had a conversation with Stacy about Haylee's eye appointment with the Emory specialist at 9am on Wednesday. The MRI is scheduled for 8am with the LP immediately afterward. Since the MRI will last about 45 minutes, the LP after, and recovery from the LP and sedation, Haylee won't make it to that appointment on time. Stacy and I talked with Dr. Abdella about trying to get her squeezed in. I told them to tell me what to do, where to go, and at what time and I would do it. The Emory eye doctor is super busy apparently!
Infusion went good :) She did all of her Social Studies work so I let her go and play the Wii. Lindsay, the outpatient Child Life Specialist, played with her before she had to go to a meeting and tried to throw in how important doing school work was before playing (Thanks Lindsay!).
We saw 3 of the 4 doctors that sees Haylee in outpatient today trying to get this eye appointment stuff figured out, having LP consent forms signed, and just getting up to speed on her overall situation and condition. I really like the doctors she sees in the outpatient clinic. I feel like she's in the best hands she can be in. They take time to answer my questions and address my concerns. I would never, ever wish a situation like this on anyone's child but should it happen, the Hem/Oc doctors at Egleston are fantastic.
WBC - 11440 (a little high, but they didn't seem concerned. Dr. Keller said her counts and chemistry was great!)
HGB - 12.7 (blood volume is going up on its own)
Platelets - 517,000 (still high but the ATRA is still in her system. down from last week.)
ANC - 3890
EKG was normal. Everything is looking good! Just need to get this eye thing figured out. Hopefully I'll have an answer by Wednesday.
The EKG went off without incident this morning. We arrived before our 9:45 physical appointment and Haylee was triaged in within about 15 minutes but they didn't have any Leuk/Lymph rooms available so we had to go back into the waiting room. An hour later we were put in a room. Haylee was able to go into the school room and get a head start on her schoolwork for this week since we were waiting for so long. She had her labs drawn, had her PE with Stacy (1 of the 4 doctors she sees in outpatient), and back to school she went while we waited for labs to come back.
I had a conversation with Stacy about Haylee's eye appointment with the Emory specialist at 9am on Wednesday. The MRI is scheduled for 8am with the LP immediately afterward. Since the MRI will last about 45 minutes, the LP after, and recovery from the LP and sedation, Haylee won't make it to that appointment on time. Stacy and I talked with Dr. Abdella about trying to get her squeezed in. I told them to tell me what to do, where to go, and at what time and I would do it. The Emory eye doctor is super busy apparently!
Infusion went good :) She did all of her Social Studies work so I let her go and play the Wii. Lindsay, the outpatient Child Life Specialist, played with her before she had to go to a meeting and tried to throw in how important doing school work was before playing (Thanks Lindsay!).
We saw 3 of the 4 doctors that sees Haylee in outpatient today trying to get this eye appointment stuff figured out, having LP consent forms signed, and just getting up to speed on her overall situation and condition. I really like the doctors she sees in the outpatient clinic. I feel like she's in the best hands she can be in. They take time to answer my questions and address my concerns. I would never, ever wish a situation like this on anyone's child but should it happen, the Hem/Oc doctors at Egleston are fantastic.
WBC - 11440 (a little high, but they didn't seem concerned. Dr. Keller said her counts and chemistry was great!)
HGB - 12.7 (blood volume is going up on its own)
Platelets - 517,000 (still high but the ATRA is still in her system. down from last week.)
ANC - 3890
EKG was normal. Everything is looking good! Just need to get this eye thing figured out. Hopefully I'll have an answer by Wednesday.
1/21-1/22/12 - An uneventful weekend :)
We had clinic on Saturday and hopefully this will be our last Saturday!! We left our house about 9:45am and was set up in a room by 11am. After the nurse asked us all the questions and a doctor came in and visited, we were FINALLY hooked up at 1:15pm. We were flushed and unhooked by 4pm but didn't get our discharge papers and leave until just after 5pm. Needless to say, I was pretty mad! Haylee got the rest of her schoolwork done and we played in the playroom for a while.
Sunday was a very lazy day. We all stayed in our PJ's until the afternoon. We went to Target for a few things then to dinner at my parents house for Sunday dinner.
Have a great start to your week!
Sunday was a very lazy day. We all stayed in our PJ's until the afternoon. We went to Target for a few things then to dinner at my parents house for Sunday dinner.
Have a great start to your week!
January 20, 2012
1/20/12 - She can see!!
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| Soooo cute with her glasses! (MJ, she has your jammies on and loves those too!) |
Dr. Abdella came by and let me know that the Emory eye doctor that they often use is fitting her in on Wednesday to check out her eyes after her MRI and LP. The Emory doctor will be more familiar with what we could be dealing with in her eyes whether it be leukemia, fungus, or whatever other possibilities it could be. We should have a definite answer Wednesday or Thursday of next week. Dr. Abdella had a good saying that her and the Hem/Oc docs use...'We hope for the best, but are prepared for the worst'.
Haylee and I had to swing by the center to get Mason early so Adam could take him to the doctor. He has croup...again! The doctor is concerned because he gets croup too much and may refer him to an ENT if he gets it again. He was given a steroid and sent home.
Haylee's homebound teacher came by for about an hour and she got a good bit of work done. Since she got behind on her work this week, she has until Sunday morning to finish this week's work or I told her I would ground her until she got caught up. I'm pretty sure she will get it done :)
The vision center called to let me know Haylee's glasses were ready for pick up so we went this afternoon to get them. She looks soooo cute in them! She was excited about getting them too. She wanted me to put in the blog they are redish/pinkish Victorious glasses (LOL). Almost like a dark magenta, I guess?? She made me pinky swear that I would tell everyone and you know what they say...you can't break a pinky promise! After she put them on and started looking around she said, "Mommy, I can see and it's not blurry!" We passed a sign and she said, "The paint on that sign is peeling." I had to look hard to see what she was talking about! She really likes her glasses and I'm glad. She takes things so well these days (needing glasses, having to get another MRI, the LP, all the treatments, eye doctors, etc.). Like my dad says, she's aged beyond her years and knows way too much than she should know at her age (or any other 8 year old for that matter). She handles things better than most adults!!
1/19/12 - A less exciting day compared to yesterday
Our day today was less exciting than yesterday and I like it that way! Our appointment was at 11:30am and it felt like we were there FOREVER. We didn't get started with infusion until almost 12:30pm and left about 2:30pm. Haylee met another little girl there and her name is Haley. They were in the school room together and then did a puzzle together after that. Haylee was able to get a little over an hour in school today and then another hour at home. She's a little behind on completing the school work but she will get caught up. I guess I need to establish more of a schedule for school. It's just hard due to her clinic schedule and me still wanting her to be a kid. I'll figure something out!
I had to change her dressing and line caps today. It went well, but I'm still on the lookout anyway! I had to give her some Benadryl afterwards because it was itching and it probably will itch for another day or so. Hopefully it gets better soon.
I meant to tell something funny Haylee said on Tuesday. One of the doctors came over during infusion to check on her because one of the nurses said she looked like she might be getting a rash on her face. The doctor was telling me that she thought Haylee looked and that it didn't look that way to her, just rosy and then said that sometimes the drugs they are on can just make their cheeks flush every now and then. Haylee heard the doctor say 'drugs' and Haylee said, "I don't do drugs. Drugs are bad." We started laughing and explained to her that there are bad and good drugs and that sometimes the doctors call medicines 'drugs'. We also told her she was right that she didn't do BAD drugs. It was cute :)
I had to change her dressing and line caps today. It went well, but I'm still on the lookout anyway! I had to give her some Benadryl afterwards because it was itching and it probably will itch for another day or so. Hopefully it gets better soon.
I meant to tell something funny Haylee said on Tuesday. One of the doctors came over during infusion to check on her because one of the nurses said she looked like she might be getting a rash on her face. The doctor was telling me that she thought Haylee looked and that it didn't look that way to her, just rosy and then said that sometimes the drugs they are on can just make their cheeks flush every now and then. Haylee heard the doctor say 'drugs' and Haylee said, "I don't do drugs. Drugs are bad." We started laughing and explained to her that there are bad and good drugs and that sometimes the doctors call medicines 'drugs'. We also told her she was right that she didn't do BAD drugs. It was cute :)
January 19, 2012
1/18/12 - A bright sunshiny day
Haylee had her opthalmologist appointment this morning at 8:45am. She's never had her eyes checked like this before so I tried to tell her what to expect (but I've never had my eyes checked before so I didn't even know what to expect!). We went in and the doctor checked her eyes on the chart and then dilated her eyes. I told her the lights would be bright and everything may look fuzzy for a while. Once her eyes were fully dilated, he looked inside them at her retinas and optic nerves. He was concerned about her left optic nerve because it was "3+ swollen". I have no idea what that means but he sounded concerned about it. Knowing her diagnosis, he called up Dr. Cooper at Egleston to speak with them further about what he saw. He kept saying "radiation emergency" and "cause for concern" and "urgent"...you know, frightening stuff!! He told me to go about my day and he would call me after he talked with Dr. Cooper further to let me know what to do. He called me about an hour later and said that they were going to try and schedule an MRI this week or the first part of next to see what they see. I decided not to get anymore concerned than I was at that point until I spoke with Dr. Cooper further.
We went to Barnes and Noble to get a few books for me and then went to Chik-Fil-A for lunch to kill some time. She kept saying how bright everything was and the light hurt her eyes. She just kept her hands over her eyes to shield them from the light. She was a good sport about it :) When we had nothing else to do, we went ahead and headed down to the hospital early. We got there at 12pm (an hour early for our appointment) but they went ahead and took us back since they had an open chair! Haylee immediately went into the school room and Maggie hooked her up shortly after (about 12:30pm).
Dr. Cooper came by and talked with me more about Haylee's eye. He's going to try and schedule her to have another MRI as well as a lumbar puncture to make sure her swollen optic nerve isn't caused by leukemia cells taking refuge on her nerve and that there is no leukemia in her spinal cord. Usually they automatically do an LP on every leukemia patient except APL patients because of the bleeding problem. If the MRI shows no leukemia on her nerves, they will send us to the Emory eye doctor they use to see what's going on further. She could have a fungus behind her eye or it could be eye related. If it shows leukemia, they will treat it accordingly. Basically, I have to wait for the MRI be done and results to come back before I can move forward.
Haylee did test positive for nearsightedness so I ordered her some glasses. She picked some cute redish-pink frames. She's gonna be so cute! I'll post pictures when she gets them in.
We went to Barnes and Noble to get a few books for me and then went to Chik-Fil-A for lunch to kill some time. She kept saying how bright everything was and the light hurt her eyes. She just kept her hands over her eyes to shield them from the light. She was a good sport about it :) When we had nothing else to do, we went ahead and headed down to the hospital early. We got there at 12pm (an hour early for our appointment) but they went ahead and took us back since they had an open chair! Haylee immediately went into the school room and Maggie hooked her up shortly after (about 12:30pm).
Dr. Cooper came by and talked with me more about Haylee's eye. He's going to try and schedule her to have another MRI as well as a lumbar puncture to make sure her swollen optic nerve isn't caused by leukemia cells taking refuge on her nerve and that there is no leukemia in her spinal cord. Usually they automatically do an LP on every leukemia patient except APL patients because of the bleeding problem. If the MRI shows no leukemia on her nerves, they will send us to the Emory eye doctor they use to see what's going on further. She could have a fungus behind her eye or it could be eye related. If it shows leukemia, they will treat it accordingly. Basically, I have to wait for the MRI be done and results to come back before I can move forward.
Haylee did test positive for nearsightedness so I ordered her some glasses. She picked some cute redish-pink frames. She's gonna be so cute! I'll post pictures when she gets them in.
January 17, 2012
1/17/12 - What a loooong day!
Haylee's EKG/PE/Inf appointments began at 9am today but because of traffic and a few sprinkles on our way down, we were 30 minutes late beginning everything. We got to the cardiac floor at 9:40am, had the EKG, and was up in the clinic by 10:05am (only 5 mins late). They don't mess around on the cardiac floor! We were put in a room around 10:30am and seen by the doctor at 11am. We had labs drawn but didn't get results from them until 1:15pm! It takes so long for metabolic/electrolyte panel to come back because they have to send it downstairs instead of their lab in the clinic The doctor said everything came back normal, including her EKG, except her liver function is a little high. The doctor didn't seem concerned by it because she said the ATRA medication can do that. They will continue to watch it and treat it if necessary. Haylee's last day of ATRA for this round was yesterday so we should see a needed but normal decrease in her liver function soon. She's been off the blood pressure medication for a week now and her BP today was normal :)
We were set up with the arsenic infusion by 2pm and done by 4pm. Maggie, our infusion nurse, is AWESOME! She gets us in and out as quick as possible! Haylee wasn't able to see the school teachers today since the school room closed at 1pm so she worked on some worksheets that her teacher sent for her. There's so much hustle and bustle on the infusion side that she has a hard time concentrating but she got 4 worksheets done, front and back.
We got home by 5pm and just relaxed. Driving and riding and hurrying and waiting makes us tired! On a positive note, I found a new route to the hospital from 85 and it really makes it faster!
WBC - 7170
HGB - 11.7
Platelets - 536,000 (a little high but the ATRA can cause the bone marrow to flush out extra platelets. Should see a decrease next week).
ANC - 3350
We were set up with the arsenic infusion by 2pm and done by 4pm. Maggie, our infusion nurse, is AWESOME! She gets us in and out as quick as possible! Haylee wasn't able to see the school teachers today since the school room closed at 1pm so she worked on some worksheets that her teacher sent for her. There's so much hustle and bustle on the infusion side that she has a hard time concentrating but she got 4 worksheets done, front and back.
We got home by 5pm and just relaxed. Driving and riding and hurrying and waiting makes us tired! On a positive note, I found a new route to the hospital from 85 and it really makes it faster!
WBC - 7170
HGB - 11.7
Platelets - 536,000 (a little high but the ATRA can cause the bone marrow to flush out extra platelets. Should see a decrease next week).
ANC - 3350
January 16, 2012
1/16/12 - MLK Day-"I have a dream..."
Haylee went to see 'Beauty and the Beast' in 3D with my mom today and had a great time! They said Belle was beautiful! She was bouncing off the walls when I got her back...Skittles and 2 cherry icees!! She was full of sugar. That's what Nonnas are for! My mom made cupcakes for the staff at my center as a way to say 'Thanks' for supporting us during everything. The girls said they were yummy!! Adam went to work and Mason went to school. I had a nice day and some much needed ME time :)
Haylee is STILL doing great and we have clinic Tuesday - Saturday this week. Tomorrow is our long day filled with EKGs, physical exams, and infusion. I'll report her counts tomorrow.
Have a great night!
Haylee is STILL doing great and we have clinic Tuesday - Saturday this week. Tomorrow is our long day filled with EKGs, physical exams, and infusion. I'll report her counts tomorrow.
Have a great night!
January 15, 2012
1/15/12 - Already the middle of January
Can you believe it's already the middle of January!? We all had another lazy day to round out our weekend. We had dinner at my parents house and that's pretty much it! No clinic tomorrow in honor of MLK's Birthday. Adam has to work, Mason will go to school, and Haylee is going to the movies with my mom. I have nothing scheduled to do except clean house :(
Have a great rest of your Sunday night!
Have a great rest of your Sunday night!
1/14/12 - Ah, no clinic today (for 3 days!)
Ah, Haylee and I didn't have to drive down to Atlanta today - and don't Saturday-Monday since Monday is MLK Birthday. The down side to that is we will be Tuesday - Saturday this week and will have to be admitted Saturday morning for treatment.
Haylee's been getting a rash that looks like hives on her neck and chin...from what? I don't know. I can control it with Benadryl (I found out last night that liquid works better than the pill!). I'm still going to get the Claritin or Zyrtec to give her during the day. It's just crazy how it comes and goes like that but I haven't changed anything for her to be having a reaction to anything.
We took the kids to my parents house last night and Adam and I went to get me another tattoo. It's a tribal sun with the Aries symbol in the middle (it's Mason's tattoo). I'm going to have "Believe" added to Haylee's tattoo in the next few weeks.
Haylee's been getting a rash that looks like hives on her neck and chin...from what? I don't know. I can control it with Benadryl (I found out last night that liquid works better than the pill!). I'm still going to get the Claritin or Zyrtec to give her during the day. It's just crazy how it comes and goes like that but I haven't changed anything for her to be having a reaction to anything.
We took the kids to my parents house last night and Adam and I went to get me another tattoo. It's a tribal sun with the Aries symbol in the middle (it's Mason's tattoo). I'm going to have "Believe" added to Haylee's tattoo in the next few weeks.
January 14, 2012
1/13/12 - Friday!
Another good day at clinic! Super fast again today...Maggie and the pharmacy were on their games again! Started at 10:50am and out by 1pm! They don't offer school on Fridays in the clinic but she was able to get The rest of her school work done while we were there and still have time to play the Wii.
The clowns were there when we arrived at clinic. Dr. Pucci was there again and he was making the entire waiting room laugh. Although some kids and adults are scared of clowns, they really are a good way to make everyone forget their troubles for a while.
Her line dressing is still itchy. I was told to try Zyrtec, Claritin, or Zantac to help with the itching during the day so she's not sleepy so I need to get some of that! It's really bad at night and the Benadryl and hydrocortizone just doesn't help enough. It makes for somewhat rough nights.
The clowns were there when we arrived at clinic. Dr. Pucci was there again and he was making the entire waiting room laugh. Although some kids and adults are scared of clowns, they really are a good way to make everyone forget their troubles for a while.
Her line dressing is still itchy. I was told to try Zyrtec, Claritin, or Zantac to help with the itching during the day so she's not sleepy so I need to get some of that! It's really bad at night and the Benadryl and hydrocortizone just doesn't help enough. It makes for somewhat rough nights.
January 12, 2012
1/12/12 - It all fell into place
What a better day! We only circled for about 5 minutes looking for a spot today! We were 5 minutes early, waited about 5 minutes for reception to call us back for infusion, the pharmacy was on their game making all the medications, and Maggie hooked us up at 10:50am on the nose. Haylee got an hours worth of school work in today and I got some work done for Cyndi and Tammi :). We were outta there at 1pm! The quickest EVER!! The only thing bad I can say for the day is that we sat in traffic this morning from Plesant Hill to 285 then it started backing up again just before Clairmont so we jumped off there and rode it in. Somehow we made it on time!
I had to change Haylee's dressing and line caps today. I was nervous because 1) it's just nerve-wracking to do since you have to stay as sterile as possible and I second guess everything I do all the time and 2) she was just getting to the point where it wasn't itching or irritating her and here I go and mess with it. She was doing so good with the rash that she didn't even need Benadryl last night for the first time in a week. By the time I got most of the dressing off is when she complained that it hurt a little. I was waiting for the screaming and complaining when I started cleaning the site with the Chloraprep solution but she just laid there and watched TV without a peep! I was so proud of her...she did AWESOME!!! The best yet! Line cap changes went off without a hitch, although that still makes me nervous...everytime. I mean, it's a direct line to her heart and the smallest bit of bacteria can send us back to the hospital. I keep a very close eye on her for about 24 hours after I change her dressings and caps. It bugs her because I'm constantly asking her if she's feeling alright or if she feels any different and checking her for fever. I'm a nervous mommy, what can I say!? Since she has an immune system now, she can fight that stuff off better and that helps ease my mind some.
I had to change Haylee's dressing and line caps today. I was nervous because 1) it's just nerve-wracking to do since you have to stay as sterile as possible and I second guess everything I do all the time and 2) she was just getting to the point where it wasn't itching or irritating her and here I go and mess with it. She was doing so good with the rash that she didn't even need Benadryl last night for the first time in a week. By the time I got most of the dressing off is when she complained that it hurt a little. I was waiting for the screaming and complaining when I started cleaning the site with the Chloraprep solution but she just laid there and watched TV without a peep! I was so proud of her...she did AWESOME!!! The best yet! Line cap changes went off without a hitch, although that still makes me nervous...everytime. I mean, it's a direct line to her heart and the smallest bit of bacteria can send us back to the hospital. I keep a very close eye on her for about 24 hours after I change her dressings and caps. It bugs her because I'm constantly asking her if she's feeling alright or if she feels any different and checking her for fever. I'm a nervous mommy, what can I say!? Since she has an immune system now, she can fight that stuff off better and that helps ease my mind some.
January 11, 2012
1/11/12 - Same ol, same ol...
Aside from the fact that we had to circle 4 levels of the parking deck for 20 minutes before we found a parking spot...Haylee had a great treatment day! The constant circling set my mood for the day, however. We were 25 minutes late for our appointment, which was at 10:30am. Every minute counts! According to our nurse, Maggie, the pharmacy was backed up making chemo medications so Haylee didn't officially get started with her treatment until 11:45am (and that made Maggie MAD! She says she's not a patient person and thought Haylee and I were great for being so patient).
She went to school for about 30 minutes today. I'm not sure how all this works with the hospital and homebound services. They are required between the both of them to make sure she has a minimum of 3 hours a week with a teacher. I just feel like she isn't getting enough time with a teacher during the week. I mean, 3 hours a week just doesn't seem adequate enough when she was getting 6 hours a day before! I'm not expecting her to get 6 hours a day but more than 3 hours a week, for sure. She's behind on her multiplication tables. I do what I can with her but it doesn't count towards her attendance and, let's face it, I'm no teacher!!
Mrs. Deal, her homebound teacher, came today to help her with her Math lessons and brought her assignments for next week. She's got plenty to keep her busy. I just hope she continues to understand everything even though she's not in the classroom.
She went to school for about 30 minutes today. I'm not sure how all this works with the hospital and homebound services. They are required between the both of them to make sure she has a minimum of 3 hours a week with a teacher. I just feel like she isn't getting enough time with a teacher during the week. I mean, 3 hours a week just doesn't seem adequate enough when she was getting 6 hours a day before! I'm not expecting her to get 6 hours a day but more than 3 hours a week, for sure. She's behind on her multiplication tables. I do what I can with her but it doesn't count towards her attendance and, let's face it, I'm no teacher!!
Mrs. Deal, her homebound teacher, came today to help her with her Math lessons and brought her assignments for next week. She's got plenty to keep her busy. I just hope she continues to understand everything even though she's not in the classroom.
January 10, 2012
1/10/12 - Getting into the swing of things
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| Laughing at the clowns |
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| He was trying to read upside down and not doing a good job! |
After she got hooked up to her arsenic, she spent some time with the clinic school teachers and got all of her Language Arts work done. Now all she has left for this week is Math and Social Studies. While she was at school, I got some phone calls out of the way and watched re-runs of Storage Wars. We're getting into a routine and most of the nurses know us by now.
We saw Savannah, the other girl that has APL, today. She has began the Maintenance phase. Her mom told us that she is in complete molecular remission!!! How exciting!!! Savannah looked great and we are so happy for her and her family! :)
Haylee met Mrs. Deal, her H/H teacher, today after clinic. Haylee is so friendly to everyone all the time so naturally she was a chatterbox! She was able to go over her Math verbally and learn how to make a timeline for Social Studies so that she will be caught up for this week. She will have another visit from Mrs. Deal tomorrow and hopefully she will finish all of her work a day early! She's a whiz at Math, which she got from her Daddy, but the Social Studies will be a little tricky because she has to make a timeline for 3 different people all on the same line. Sounds easy to us, but she was a little confused by it. Mrs. Deal was able to teach her a way that she understood. She finished up some last minute work and called it a night!
My mom got a tattoo of the leukemia ribbon and it looks great! When I get a picture, I'll post it.
"HOPE FOR HAYLEE", always :)
January 9, 2012
1/9/12 - Monday Funday!
We were at clinic allllll day. At least we're not inpatient for the time being but clinic days are sooooo long! Haylee had her EKG this morning which looked great! All of her counts and chemistry blood work came back looking good as well. Dr. Keller came in and said she was looking great and gave her the OK to return to school the 2 weeks she's in between arsenic treatment sessions. She was excited to hear that! I'll be a nervous wreck when that happens. Dr. Keller also said because her blood pressure has been good for a while, she could quit taking the blood pressure pill! Yay, 1 less pill to take!!
I made her do schoolwork when she was doing her 2 hours of infusion and she was mad at me. She acted like she hadn't got to do anything she wanted to do today. I let her play her DS and watch TV while she waited to get her EKG and the entire time before infusion time (4 1/2 hours!) and she wanted to give me a hard time about 2 hours worth of school work. I told her she could just be mad and do the work or repeat 3rd grade...she did the work :)
Haylee is supposed to meet with the H/H teacher tomorrow afternoon. Maybe she will do better with her! I'm sure she will cause she will make sure she works and doesn't mess around. I'm the Mom, so she figures she can 'play' me but it doesn't work and she doesn't like it! Haha!
WBC - 7220
HGB - 11.5
Platelets - 372,000
ANC - 4120
I made her do schoolwork when she was doing her 2 hours of infusion and she was mad at me. She acted like she hadn't got to do anything she wanted to do today. I let her play her DS and watch TV while she waited to get her EKG and the entire time before infusion time (4 1/2 hours!) and she wanted to give me a hard time about 2 hours worth of school work. I told her she could just be mad and do the work or repeat 3rd grade...she did the work :)
Haylee is supposed to meet with the H/H teacher tomorrow afternoon. Maybe she will do better with her! I'm sure she will cause she will make sure she works and doesn't mess around. I'm the Mom, so she figures she can 'play' me but it doesn't work and she doesn't like it! Haha!
WBC - 7220
HGB - 11.5
Platelets - 372,000
ANC - 4120
January 8, 2012
1/8/12 - That's what I love about Sundays...
What a dreary day!! The good news is that there is nothing new to report :) Haylee is still doing awesome, feeling great, and back to herself!!
I met up with some good friends (Stephanie B, Desiree, and Ivy!!) at Dos Copas last night to have a few drinks and listen to some music from my favorite local band, Full Frontal. Love them! Next time Stephanie is in town, we're gonna get the kids together so they can play.
We grocery shopped and pretty much lounged around all day after that. Our PJ's were on by 4:30pm! We saw one of Haylee's friends, Gabby, and her family at the grocery store. Haylee was so happy to see her! She could actually hug her this time since last time they saw each other Haylee's counts were still down and I was nervous about them getting too close.
Have a great rest of your Sunday! Back to clinic tomorrow for EKG and infusion.
I met up with some good friends (Stephanie B, Desiree, and Ivy!!) at Dos Copas last night to have a few drinks and listen to some music from my favorite local band, Full Frontal. Love them! Next time Stephanie is in town, we're gonna get the kids together so they can play.
We grocery shopped and pretty much lounged around all day after that. Our PJ's were on by 4:30pm! We saw one of Haylee's friends, Gabby, and her family at the grocery store. Haylee was so happy to see her! She could actually hug her this time since last time they saw each other Haylee's counts were still down and I was nervous about them getting too close.
Have a great rest of your Sunday! Back to clinic tomorrow for EKG and infusion.
January 7, 2012
1/7/12 - Clinic on a Saturday
Because of Monday being a holiday for the clinic staff and they weren't open, we had to do clinic today on the inpatient floor of the hospital and had to be admitted for our time there. We were there at 8am but didn't start infusion until 10am. They aren't as fast as the clinic (and they said they wouldn't be). It was the longest morning but I did doze in and out on their "couch" they have in the rooms. I don't miss sleeping there! Haylee watched TV, played her DS, and played in the playroom. We went down to the cafeteria around 12pm for lunch while her infusion finished. By the time we were done with lunch, she was done with her infusion and we were discharged and ready to go home. We were home by 1:30pm. We start Monday - Friday clinic next week but will have to do Tuesday - Saturday again the week of the MLK holiday since clinic closes for that day as well.
I changed her dressing to a different one that Maggie (one of the clinic nurses) gave us that helps with sensitive skin and it seems to be working! She's not scratching hardly at all and if she does, she doesn't cry about it and giving Benadryl helps, where it was barely helping before. I'm so glad too cause I felt so bad that there was nothing I could do to help her except tell her to stop scratching and to her, that wasn't helping! But it seems to be working and we're so glad!!
I changed her dressing to a different one that Maggie (one of the clinic nurses) gave us that helps with sensitive skin and it seems to be working! She's not scratching hardly at all and if she does, she doesn't cry about it and giving Benadryl helps, where it was barely helping before. I'm so glad too cause I felt so bad that there was nothing I could do to help her except tell her to stop scratching and to her, that wasn't helping! But it seems to be working and we're so glad!!
January 6, 2012
1/6/12 - Happy First Friday of 2012!
Haylee and I had a bit of a rough night. Her rash under the CVL dressing was really bothering her. She tries as hard as she can to not to scratch it but I'm sure its hard. So we slept on the couches so not to bother Adam and Mason :(
The nurse today gave us a few dressings to try that may help but we won't know for a few days. I hope these work!! Our new home health company is going to send us dressing for sensitive skin (thank you!!). I changed the dressing to the a new one from the nurse so keep your fingers crossed! I'll just continue to give her Benadryl and heat and icepacks until it's tolerable. It's really all I can do at this point.
I made Haylee do some school work during infusion. She's such a good student and is super smart but trying to get her to focus and do the work is the hard part. I can't wait for next week when the teachers at the hospital as well as the homebound teacher can work with her and not me!!
Infusion went well again! Haylee's responding so well to the Arsenic. I hope it continues!
The nurse today gave us a few dressings to try that may help but we won't know for a few days. I hope these work!! Our new home health company is going to send us dressing for sensitive skin (thank you!!). I changed the dressing to the a new one from the nurse so keep your fingers crossed! I'll just continue to give her Benadryl and heat and icepacks until it's tolerable. It's really all I can do at this point.
I made Haylee do some school work during infusion. She's such a good student and is super smart but trying to get her to focus and do the work is the hard part. I can't wait for next week when the teachers at the hospital as well as the homebound teacher can work with her and not me!!
Infusion went well again! Haylee's responding so well to the Arsenic. I hope it continues!
January 5, 2012
1/5/12 - Rest of the school year...taken care of!
Arsenic infusion went off without any issues! We were there at 8:30am and out by 11:45am. Pretty good day if you ask me!
I had a meeting at Haylee's school along with the H/H teacher today. She's set for the rest of the year. Her assignments will come in 1-2 weeks at a time. The H/H teacher will come to our house and work with her and she will get instruction time during clinic as well. I was worried about the CRCT test this year but since she's ahead in her academics, she has 1 of 4 options and they will all depend on her treatment schedule: 1) the H/H teacher will administer the test at our house, 2) she will have the option to make up the reading and math portions in May, 3) she could attend school when the test is being administered should her counts be fine and she's not inpatient at the time, 4) she just doesn't take it and according to her teacher and the assistant principal that would be fine. She would still go to 4th grade without taking the test. I also let them know that she will have 2 weeks where she won't be in clinic and she could return to school at that time as long as her restrictions are followed (no PE, unlimited breaks, close watch during recess, ability to wear hats, carry around hand sanitizer and a water bottle, etc.).
I gave her teacher the Monkey In My Chair monkey that 'replaces' her at her desk when she can't attend school. It gives the kids a way to 'include' Haylee in their everyday activities and allows them to journal about their day with the monkey, take pictures with the monkey, and even name it. Haylee will get to see and read about the things they have done with the monkey when she is able to return to school. She was excited that she may be able to go to school for a few weeks. Regardless of what she may say, she misses school. Haylee is one of those kids who actually likes school! She must of gotten that from her Nonna, because she didn't get it from me or Adam!!
She's been complaining that the skin itches under the dressing covering her line so I thought maybe it was from the actual dressing itself. I changed her dressing 2 days early in hopes that putting a different dressing on her may help...I think I made it worse. Since it has to be cleaned with Chloraprep and her skin underneath is sensitive, it's like putting rubbing alcohol on scraped skin. Poor baby, it's been burning! The skin underneath has a raised rash on it. I called the Hem/Oc doctor on call at Egleston and he didn't seem too concerned unless she was running a fever (which she's not). I gave her some Benadryl and had her rub and icepack on it but it only helps some. She will be fine for a minute and crying the next. I don't know what to do for her and she won't leave it alone enough for it to 'calm down'. I can imagine that it's uncomfortable but I'm just at a loss on this one. I don't know what to do.
I had a meeting at Haylee's school along with the H/H teacher today. She's set for the rest of the year. Her assignments will come in 1-2 weeks at a time. The H/H teacher will come to our house and work with her and she will get instruction time during clinic as well. I was worried about the CRCT test this year but since she's ahead in her academics, she has 1 of 4 options and they will all depend on her treatment schedule: 1) the H/H teacher will administer the test at our house, 2) she will have the option to make up the reading and math portions in May, 3) she could attend school when the test is being administered should her counts be fine and she's not inpatient at the time, 4) she just doesn't take it and according to her teacher and the assistant principal that would be fine. She would still go to 4th grade without taking the test. I also let them know that she will have 2 weeks where she won't be in clinic and she could return to school at that time as long as her restrictions are followed (no PE, unlimited breaks, close watch during recess, ability to wear hats, carry around hand sanitizer and a water bottle, etc.).
I gave her teacher the Monkey In My Chair monkey that 'replaces' her at her desk when she can't attend school. It gives the kids a way to 'include' Haylee in their everyday activities and allows them to journal about their day with the monkey, take pictures with the monkey, and even name it. Haylee will get to see and read about the things they have done with the monkey when she is able to return to school. She was excited that she may be able to go to school for a few weeks. Regardless of what she may say, she misses school. Haylee is one of those kids who actually likes school! She must of gotten that from her Nonna, because she didn't get it from me or Adam!!
She's been complaining that the skin itches under the dressing covering her line so I thought maybe it was from the actual dressing itself. I changed her dressing 2 days early in hopes that putting a different dressing on her may help...I think I made it worse. Since it has to be cleaned with Chloraprep and her skin underneath is sensitive, it's like putting rubbing alcohol on scraped skin. Poor baby, it's been burning! The skin underneath has a raised rash on it. I called the Hem/Oc doctor on call at Egleston and he didn't seem too concerned unless she was running a fever (which she's not). I gave her some Benadryl and had her rub and icepack on it but it only helps some. She will be fine for a minute and crying the next. I don't know what to do for her and she won't leave it alone enough for it to 'calm down'. I can imagine that it's uncomfortable but I'm just at a loss on this one. I don't know what to do.
January 4, 2012
1/4/12 - Insurance...friend or foe??
Haylee's clinic visit was a good one! I hope it keeps going this smooth for the entire Consolidation 1!! This has been the easiest part aside from driving back and forth everyday. To answer a question that was asked by Michelle if she will be able to return to school part-time, to be honest I'm not sure of that answer. Consolidation 1 consists of 66 days of Arsenic treatments (Monday-Friday for 10 weeks with a 2 week break between each 5 week session). Because the treatments are daily, she may only be able to return to school for 'social visits' only. And since she's in remission and her immune system is normal, I won't feel like I'm putting her in harms way (except her having her CVL line dangling from her chest which will have me worrying all the time).
Adam went to the pharmacy today to pick up a prescription for her anti-nausea medication. The pharmacist said she was terminated from her Wellcare insurance. Can you imagine the terror that I went through at that moment?? In a nutshell and after calling Peachcare (twice), Georgia Healthy Families, and Wellcare, she was terminated from Wellcare and enrolled in SSI Medicaid as of January 1, 2012 because of her SSI disability benefits kicking in at the beginning of December. Because I paid for both the kids Peachcare coverage before January 1, she still qualifies for Peachcare through January. Do you think anybody thought this was something I needed to know?? Apparently not, because I wasn't informed at all. No letter, no email, no phone call, no certified letter, no singing telegram...nothing. Medicaid requires pre-authorizations on certain medications and doesn't at all cover the cost of Haylee's line supplies (line caps, dressing changes, flushes, etc.) or skilled nursing visits like Wellcare did. We will have to pay out-of-pocket for the cost of monthly delivery of supplies. UGH! If it's not one thing, it's another!!! At least I didn't find out when she was in need of medications or supplies or that she isn't covered at all! I did breathe a sigh of relief that she's still covered and that's whats most important!!!!
Adam went to the pharmacy today to pick up a prescription for her anti-nausea medication. The pharmacist said she was terminated from her Wellcare insurance. Can you imagine the terror that I went through at that moment?? In a nutshell and after calling Peachcare (twice), Georgia Healthy Families, and Wellcare, she was terminated from Wellcare and enrolled in SSI Medicaid as of January 1, 2012 because of her SSI disability benefits kicking in at the beginning of December. Because I paid for both the kids Peachcare coverage before January 1, she still qualifies for Peachcare through January. Do you think anybody thought this was something I needed to know?? Apparently not, because I wasn't informed at all. No letter, no email, no phone call, no certified letter, no singing telegram...nothing. Medicaid requires pre-authorizations on certain medications and doesn't at all cover the cost of Haylee's line supplies (line caps, dressing changes, flushes, etc.) or skilled nursing visits like Wellcare did. We will have to pay out-of-pocket for the cost of monthly delivery of supplies. UGH! If it's not one thing, it's another!!! At least I didn't find out when she was in need of medications or supplies or that she isn't covered at all! I did breathe a sigh of relief that she's still covered and that's whats most important!!!!
January 3, 2012
1/3/12 - Bone Marrow results are in...
We had our first official clinic visit today - Consolidation 1 begins! Haylee had to have an EKG and a repeat Echo cardiogram done. I was a little irritated with that because she just had one on Wednesday. A cardio RN came in and explained that the doctors ordered another one and that it happened often. Both tests went fine.
We went up to the outpatient clinic and had a physical exam and labs drawn. Haylee having a CVL line really helps so she's not having to be poked every time they need something from her or to give her meds. She was pretty grateful for that! The doctor came in a talked with me for a while about what to expect during the arsenic treatments - warning signs to look for and possible side effects (aside from the normal nausea, vomiting, diarrhea, constipation that are possible with every other medication). She also explained to me about the repeat Echo. Haylee had a decrease in heart function, about 6%, although her heart function was still normal. They said that it was probably because she had been fasting and had little to drink so she could've been a little dehydrated. Because of the decrease was why it was repeated. I felt a twinge of guilt since I got irritated about it but if they would've told me why then, I would've understood. The arsenic can cause a disruption in electrolyte levels as well as heart function so at the beginning of every week, she will get an EKG, blood levels checked, and a BMP panel (potassium, magnesium, calcium, cholesterol, and triglycerides) checked. Currently, her cholesterol and triglycerides are high but the doctor said the ATRA can cause that. They will continue to watch it and if they have to treat her for it, they will if the time comes.
Now, her bone marrow results.....she is currently in remission!!!!!!!!!!!!!!!!!!!!!!!!!!! She has no leukemia cells in her bone marrow. Her treatment plan will continue as normal but it shows that what they have already done is working and working very well!! I started crying when they told me and Haylee said, "Mommy, don't cry!" I had to explain they were happy tears and those were OK (LOL). Her immune system is NORMAL. It's the first time it's been normal since....sometime before she was diagnosed. She doesn't have to wear her mask anymore!!! She's doing great, her blood and bone marrow are great, she's responding well to treatment...we couldn't be happier!!!
We are still in need of all the prayers, thoughts, and support! Haylee still has a long road, she still has a lot of treatment left, and it's possible she may have a few setbacks from time to time. Every little thought, every small prayer...they all count and they count BIG in our eyes.
WBC - 6480
Platelets - 364,000
HGB - 11.2
ANC (infection fighting cells) - 3270
We went up to the outpatient clinic and had a physical exam and labs drawn. Haylee having a CVL line really helps so she's not having to be poked every time they need something from her or to give her meds. She was pretty grateful for that! The doctor came in a talked with me for a while about what to expect during the arsenic treatments - warning signs to look for and possible side effects (aside from the normal nausea, vomiting, diarrhea, constipation that are possible with every other medication). She also explained to me about the repeat Echo. Haylee had a decrease in heart function, about 6%, although her heart function was still normal. They said that it was probably because she had been fasting and had little to drink so she could've been a little dehydrated. Because of the decrease was why it was repeated. I felt a twinge of guilt since I got irritated about it but if they would've told me why then, I would've understood. The arsenic can cause a disruption in electrolyte levels as well as heart function so at the beginning of every week, she will get an EKG, blood levels checked, and a BMP panel (potassium, magnesium, calcium, cholesterol, and triglycerides) checked. Currently, her cholesterol and triglycerides are high but the doctor said the ATRA can cause that. They will continue to watch it and if they have to treat her for it, they will if the time comes.
Now, her bone marrow results.....she is currently in remission!!!!!!!!!!!!!!!!!!!!!!!!!!! She has no leukemia cells in her bone marrow. Her treatment plan will continue as normal but it shows that what they have already done is working and working very well!! I started crying when they told me and Haylee said, "Mommy, don't cry!" I had to explain they were happy tears and those were OK (LOL). Her immune system is NORMAL. It's the first time it's been normal since....sometime before she was diagnosed. She doesn't have to wear her mask anymore!!! She's doing great, her blood and bone marrow are great, she's responding well to treatment...we couldn't be happier!!!
We are still in need of all the prayers, thoughts, and support! Haylee still has a long road, she still has a lot of treatment left, and it's possible she may have a few setbacks from time to time. Every little thought, every small prayer...they all count and they count BIG in our eyes.
WBC - 6480
Platelets - 364,000
HGB - 11.2
ANC (infection fighting cells) - 3270
January 2, 2012
Please read! About the Arsenic treatments.
Taken from ScienceDaily to better understand the why Haylee will be receiving the Arsenic treatment for her leukemia. It's a very interesting read although it can be a bit scientific at times. It even helped me understand it more.
Wake Forest University Baptist Medical Center. "Arsenic early in treatment improves survival for leukemia patients, study finds." ScienceDaily, 11 Nov. 2010. Web. 2 Jan. 2012.
Researchers with the Cancer and Leukemia Group B, a group of cancer and leukemia researchers funded by the National Cancer Institute, led a study to determine if, by administering arsenic trioxide earlier -- after a patient has finished standard initial treatment and reached first remission -- they could improve survival rates. The results were dramatic.
"Patients with APL can achieve remission with standard treatment (chemotherapy plus ATRA, an oral vitamin A-based compound), but it often comes back," said Bayard L. Powell, M.D., a professor of hematology and oncology at Wake Forest Baptist, principal investigator and lead author on the study. "Arsenic trioxide is then used to get them back into remission, often followed by a bone marrow transplant to try to cure the patient. For this study, we used arsenic as an early "consolidation therapy" after the initial standard treatment to essentially, as one of our first patients described, 'seal the deal' the first time around. Not only did the leukemia rarely return in the patients who received the arsenic, those patients also lived longer."
The findings appear in the November 11 issue of Blood.
APL accounts for about 10 to 15 percent of acute myeloid leukemia cases and presents most frequently in young adults. It is associated with a very high risk of severe bleeding complications, including early death from bleeding into the brain.
Current treatment of APL involves a combination of all-trans retinoic acid (ATRA) plus chemotherapy to induce remission, followed by additional "consolidation" chemotherapy to strengthen the remission, followed by further ATRA with or without oral chemotherapy to maintain remission. This approach yields complete remission rates of about 90 percent and improved event-free survival, with an "event" defined as failure to achieve complete remission, relapse after achieving complete remission, or death.
Those with high white blood cell counts at diagnosis have a worse prognosis, however, with higher risk of early death during initial standard treatment. If they survive initial treatment and enter remission, they are also more prone to relapse, at which point arsenic is introduced to push them back into remission.
While arsenic can be toxic and is used in potent pesticides and poisons, it also exists naturally in the environment and, when manufactured under carefully-controlled conditions and used appropriately by doctors and nurses experienced in the treatment of cancer, can provide a significant health benefit.
Arsenic has been proven effective in pushing those unresponsive to initial treatment, and those who relapse after initial response, into remission. But researchers wanted to know what would happen if they used the arsenic trioxide after initial standard treatment, rather than wait until a patient relapses.
For the study, North American Leukemia Intergroup trial C9710, investigators randomized 481 patients with untreated APL, age 15 and older, into two groups. Both groups would receive standard treatment of ATRA plus chemotherapy, followed by standard consolidation therapy. One of the groups received an additional two 25-day courses of intravenous arsenic trioxide before administration of the standard consolidation therapy.
The patients in the investigational group received arsenic trioxide intravenously for one hour, five days a week, for five weeks, with a two-week break between courses.
After initial standard treatment, both groups experienced similar rates of remission, at about 90 percent, and there were no treatment-related deaths reported from either group during consolidation therapy, indicating that the addition of arsenic treatment earlier introduces no additional safety concerns.
Analysis of the overall results revealed that event-free survival, defined as the time from study entry to first event (defined above), was significantly better for patients randomized to receive the arsenic trioxide consolidation therapy, For example, after three years, event-free survival was 80 percent in the arsenic group versus 63 percent in the non-arsenic group. Arsenic trioxide consolidation provided significant benefit to patients in the investigational group regardless of their initial prognosis based on white blood cell count and other risk factors.
The group who received arsenic also faired better in relapse rates and overall survival, researchers found. Out of 196 study participants who received at least one dose of arsenic after initial standard treatment, only seven individuals -- four percent -- relapsed within three years of follow-up.
"We think people who received the arsenic trioxide after initial standard treatment are likely cured," Powell said. "There have been no relapses in that group after 36 months. The use of arsenic earlier in treatment improves the cure rate and survival, and it does so with little or no additional toxicity."
The results are exciting, Powell said. "It gives us hope that, with the addition of arsenic trioxide earlier in treatment, we may be able to eliminate some of the chemotherapy and reduce toxicities and costs."
However, 19 patients (eight percent) in each group died during the initial standard treatment, Powell pointed out, and those who were randomized to receive the arsenic never got a chance to benefit from it, since they didn't live through the initial treatment.
"One of our next objectives is to reduce or eliminate these early deaths -- most common in patients with high white blood cell counts -- possibly by introducing arsenic even earlier than we did this time, as part of initial induction therapy, to help them achieve remission," Powell said. "Some of these patients are at such high risk that they may need the arsenic just to get them into remission, so they have a chance."
Wake Forest University Baptist Medical Center. "Arsenic early in treatment improves survival for leukemia patients, study finds." ScienceDaily, 11 Nov. 2010. Web. 2 Jan. 2012.
ScienceDaily (Nov. 11, 2010) — Arsenic, a toxic compound with a reputation as a good tool for committing homicide, has a significant positive effect on the survival of patients with acute promyelocytic leukemia (APL), when administered after standard initial treatment, according to a new, multi-center study led by a researcher at Wake Forest University Baptist Medical Center.
While arsenic trioxide (As2O3) is known by clinicians to be a highly effective treatment for patients with relapsed APL, its benefit earlier in treatment, after first remission, has remained unknown…until now.Researchers with the Cancer and Leukemia Group B, a group of cancer and leukemia researchers funded by the National Cancer Institute, led a study to determine if, by administering arsenic trioxide earlier -- after a patient has finished standard initial treatment and reached first remission -- they could improve survival rates. The results were dramatic.
"Patients with APL can achieve remission with standard treatment (chemotherapy plus ATRA, an oral vitamin A-based compound), but it often comes back," said Bayard L. Powell, M.D., a professor of hematology and oncology at Wake Forest Baptist, principal investigator and lead author on the study. "Arsenic trioxide is then used to get them back into remission, often followed by a bone marrow transplant to try to cure the patient. For this study, we used arsenic as an early "consolidation therapy" after the initial standard treatment to essentially, as one of our first patients described, 'seal the deal' the first time around. Not only did the leukemia rarely return in the patients who received the arsenic, those patients also lived longer."
The findings appear in the November 11 issue of Blood.
APL accounts for about 10 to 15 percent of acute myeloid leukemia cases and presents most frequently in young adults. It is associated with a very high risk of severe bleeding complications, including early death from bleeding into the brain.
Current treatment of APL involves a combination of all-trans retinoic acid (ATRA) plus chemotherapy to induce remission, followed by additional "consolidation" chemotherapy to strengthen the remission, followed by further ATRA with or without oral chemotherapy to maintain remission. This approach yields complete remission rates of about 90 percent and improved event-free survival, with an "event" defined as failure to achieve complete remission, relapse after achieving complete remission, or death.
Those with high white blood cell counts at diagnosis have a worse prognosis, however, with higher risk of early death during initial standard treatment. If they survive initial treatment and enter remission, they are also more prone to relapse, at which point arsenic is introduced to push them back into remission.
While arsenic can be toxic and is used in potent pesticides and poisons, it also exists naturally in the environment and, when manufactured under carefully-controlled conditions and used appropriately by doctors and nurses experienced in the treatment of cancer, can provide a significant health benefit.
Arsenic has been proven effective in pushing those unresponsive to initial treatment, and those who relapse after initial response, into remission. But researchers wanted to know what would happen if they used the arsenic trioxide after initial standard treatment, rather than wait until a patient relapses.
For the study, North American Leukemia Intergroup trial C9710, investigators randomized 481 patients with untreated APL, age 15 and older, into two groups. Both groups would receive standard treatment of ATRA plus chemotherapy, followed by standard consolidation therapy. One of the groups received an additional two 25-day courses of intravenous arsenic trioxide before administration of the standard consolidation therapy.
The patients in the investigational group received arsenic trioxide intravenously for one hour, five days a week, for five weeks, with a two-week break between courses.
After initial standard treatment, both groups experienced similar rates of remission, at about 90 percent, and there were no treatment-related deaths reported from either group during consolidation therapy, indicating that the addition of arsenic treatment earlier introduces no additional safety concerns.
Analysis of the overall results revealed that event-free survival, defined as the time from study entry to first event (defined above), was significantly better for patients randomized to receive the arsenic trioxide consolidation therapy, For example, after three years, event-free survival was 80 percent in the arsenic group versus 63 percent in the non-arsenic group. Arsenic trioxide consolidation provided significant benefit to patients in the investigational group regardless of their initial prognosis based on white blood cell count and other risk factors.
The group who received arsenic also faired better in relapse rates and overall survival, researchers found. Out of 196 study participants who received at least one dose of arsenic after initial standard treatment, only seven individuals -- four percent -- relapsed within three years of follow-up.
"We think people who received the arsenic trioxide after initial standard treatment are likely cured," Powell said. "There have been no relapses in that group after 36 months. The use of arsenic earlier in treatment improves the cure rate and survival, and it does so with little or no additional toxicity."
The results are exciting, Powell said. "It gives us hope that, with the addition of arsenic trioxide earlier in treatment, we may be able to eliminate some of the chemotherapy and reduce toxicities and costs."
However, 19 patients (eight percent) in each group died during the initial standard treatment, Powell pointed out, and those who were randomized to receive the arsenic never got a chance to benefit from it, since they didn't live through the initial treatment.
"One of our next objectives is to reduce or eliminate these early deaths -- most common in patients with high white blood cell counts -- possibly by introducing arsenic even earlier than we did this time, as part of initial induction therapy, to help them achieve remission," Powell said. "Some of these patients are at such high risk that they may need the arsenic just to get them into remission, so they have a chance."
1/2/12 - Post New Year Day
My dear friend, Meth, and her beautiful girls, Abby and Jasmine, came by for a visit today. All 3 girls played so well together and it's always great catching up with Meth. Mason put on quite the show for them (as always!).
After they left, Haylee played with Savannah for a little while. She enjoys it so much and with clinic starting full time tomorrow, I'm not sure how much they will get to play. I'm sure it will all depend on how well she handles the treatment and what time the appointments are. I really have no idea what to expect from these treatments...only what the side effect paper tells me could happen. I'm afraid to Google it, ya know?
Well, nothing much to tell today! That's always good, right??
After they left, Haylee played with Savannah for a little while. She enjoys it so much and with clinic starting full time tomorrow, I'm not sure how much they will get to play. I'm sure it will all depend on how well she handles the treatment and what time the appointments are. I really have no idea what to expect from these treatments...only what the side effect paper tells me could happen. I'm afraid to Google it, ya know?
Well, nothing much to tell today! That's always good, right??
January 1, 2012
HAPPY NEW YEAR!
I ended up getting a tattoo in honor of Haylee...a blue and purple butterfly with an orange leukemia ribbon for its body. Kim and Durena went with me (ya'll are the absolute BEST!). They were good helping me keep my mind off of the pain! Haha!
We went to Cracker Barrel for dinner (yum, biscuits and gravy) then shopped a bit afterwards. We came home, the kids went to bed around 9:30pm and we stayed up and watched the New Year's Eve shows (which were awful this year) and watched the ball drop. Very uneventful and I like it that way :)
New Year's Day, again, was just another Sunday to us. We went book shopping and had dinner at Nonna and PawPaw's house. We made sure we ate our greens!
Haylee has been doing AWESOME! She's pretty much been back to normal (attitude, being mean to Mason, playing with her friends). She had her line caps changed on Thursday and her line dressing changed on Saturday with no problems! We're getting used to the lifestyle change we have had to make.
The end of 2011 was a very trying and emotional time for our family due to Haylee's diagnosis. We have found a way to deal with everything that has been handed to us lately, whether we wanted them or not. We pay more attention to the little things in life, we love a little stronger, and we stay as routine as possible to give Haylee and Mason the most normal lives we can give them at this point. Both of their lives, along with ours, have been completely turned upside down. We have learned to take everything one step at a time. Adam and I take time to be with just each other and we spend lots of time as a family. I've said this before...the road ahead is a very long one. We have many more treatments and hospitalizations coming. The love and support we have received and are still receiving from everyone is so amazing to us. Thank you to everyone, near and far, for everything. We are truly blessed to have someone like you in our lives.
Another fresh new year is here . . .
Another year to live!
To banish worry, doubt, and fear,
To love and laugh and give!
This bright new year is given me
To live each day with zest . . .
To daily grow and try to be
My highest and my best!
I have the opportunity
Once more to right some wrongs,
To pray for peace, to plant a tree,
And sing more joyful songs!
- William Arthur Ward
Learn from yesterday, live for today, hope for tomorrow.
- Einstein
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