Haylee had her weekly clinic visit yesterday. It went really well! Her counts look really good, even though her ANC went down to 940...it's a little low, but still decent. Dr. Abdella said that it may drop a little bit more but that it should be on the rise in a few days.
The finger prick for counts was better...still took 10 minutes, but it's been the best so far. She was able to pick a prize from the treasure box and is working her way up to Lindsay's Magic Closet :) Lindsay is such an asset when we go to clinic. What would we do without her?!
Haylee's set to go back inpatient on June 5. It was supposed to be May 29 but all the sedation rooms are booked solid because of the holiday next week. If they can get us in earlier, they will. With her starting the last round (yay!) into June, it could cut into her going to Camp Twin Lakes for Junior week by a few days. We can drive her down to finish it out though. Dr. Abdella said that if theres even a glimmer of hope that her counts are going to recover the week before camp, they will discharge her early so that she doesn't miss any part of camp.
She's so excited about camp! It will give her the opportunity to meet other kids going through some of the same things she's going through. I think she needs that. Her friends her don't totally understand what's going on and she needs to bond with other kids 'like her'. Her friend, Carrie (she's 16), that she met in the hospital goes to Teen Week every year and has really talked camp up for her. Stacy is one of they doctors on call that week and that makes me feel better since she's familiar with Haylee. There will also be some nurses there that she will know and that will know her. I know it's something I need to let her go but as a mom, it's scary to let my child, who was diagnosed with leukemia 6 months ago, leave me for an entire week to go to a camp hours away with no contact except letters. I know she will be fine, she will be taken care of and she'll have a good time. It's the mommy in me not wanting to let her go. It'll be the longest week of my life!!
We've got a busy weekend ahead of us this Memorial Day and we're so excited! Have a great rest of your week and a safe Memorial Day!
~Hope for Haylee~
May 23, 2012
May 15, 2012
5/15/12 - 3 questions answered...
The fundraiser is still going on!! We really would like to reach our goal to ensure that all of our financial obligations are well taken care of. Please promote through Facebook, Twitter, and through email to get the word out!!! Thanks!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Ahhh! I hate being late to clinic. We were stuck in traffic for what seemed like forever, but made it...and was only 15 minutes late. Since we were stop and go, I was able to put the EMLA cream on her so it wasn't on for a long time just in case her port had to be accessed.
We were in triage 10 minutes later and had to get the dreaded finger prick....not a favorite with Haylee. I try so hard to give her choices and do my best to make it a smooth thing for her but she doesn't let me or herself. Lindsay and I tried the technique the nurses and Nonna used last week and she did it but not after a bit of a fight. Finally, after about 10 more minutes, she got it done with a minimal amount of tears. I wish it was something she could get over but it may not be something she ever gets used to. Everyone has something I guess.
As soon as we hit the clinic room, she was out the door with Lindsay finishing up her powerpoint presentation that she made for her class. Her and Lindsay were able to get it finished for the most part. Lindsay has a few more things to add to it. She's going to email it to me and I'm going to try and find a way to get it onto the blog. It's really cute because she took the pictures and it's all in her own words. Haylee was really excited about it :)
Dr. Abdella came in looking for Haylee a few minutes later. She was waiting for all the counts to come in but wanted to go ahead and check her out so we could get out of there quickly. I had 3 questions for her so I got those out of the way while we waited for Haylee and Lindsay to return:
Q - 1. Since I promised Haylee we would take her to the beach after all her scheduled admissions were over, when would we be safe to take her more than 2 hours away from the hospital (on a vacation to the beach)?
A - Since she will be scheduled for inpatient either May 29 or June 5 (depending on counts), given that everything goes according to planned during the last admission, and counts recover like they did last time, she should be good to go on vacation the last week of July into August. Once she's released from the hospital (end of June or first few days in July) she will be scheduled for a clinic visit about a week afterwards to check counts and then have a week or 2 for counts to completely recover. Good news!!! I'm hoping we can make it to a beach!
Q - 2. How is it determined that she is 'cured'? (Basically, when does the countdown begin and for how many years?)
A - Haylee has the rest of this consolidation, Consolidation 4 (4 weeks, give or take), and then nine 84-day cycles for Maintenance. Adding all that up, her remaining therapy is the next 2 years and 2 months (give or take a few weeks). The countdown to being officially cured begins at the end of all therapy (she will be 11). She will have to continue to show no signs of relapse or leukemia cells in her bone marrow for 5 years to be considered officially cured - she will be 16. We've got a long road ahead. With that being said, we go to the next question...
Q - 3. What were the results of the BMA taken 2 weeks ago?
A - The BMA done 2 weeks ago was being checked for a specific gene - the PML/RARĪ± fusion gene - which is what doctors look for in the diagnosis of APML. They use a method called PCR - Polymerase Chain Reaction - to check for the gene. Back in December, Haylee went into cellular remission meaning that no leukemia cells were present in her bone marrow on the cellular level. Up until this point, her BMAs haven't been tested for the specific gene mentioned above...until now. Checking for that specific gene is done on the molecular level, which is pretty much as far in depth as you can get without using the words 'complete remission' or 'cured'. Dr. Abdella went to find out if the PCR done on her BMA found anything and the answer is....NO!!! Haylee is now considered to be in molecular remission!!! Those were the sweetest words I've ever heard :) They will continue to check for the fusion gene with every BMA done during the remaining therapy and every year after that. As long as the fusion gene doesn't come back, ever, she will be considered cured after the above said time (see answer to question 2).
I know all this is a lot to process!! I explained it more in depth than what we discussed today to help you understand how some of this stuff works. I hope you are able to understand it to some degree :)
Haylee's counts look GREAT! She can finish the school year out at school, where she should be. She's also going to take the reading portion of the CRCT on Thursday even though the AP of her school said they would promote her to the 4th grade regardless if she takes it or not.
Her next clinic appointment is next Tuesday to check counts again. Hopefully her counts stay up, especially her hemoglobin and platelet counts so she doesn't have to be accessed (she's only accessed for chemo and to receive blood products, if needed). Dr. Abdella was impressed how well she's handled this round of chemo since the Idarubicin can tend to make kids feel yucky. She's not been feeling yucky so far!!
Have a great rest of the week! I'll update in a few days :)
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Ahhh! I hate being late to clinic. We were stuck in traffic for what seemed like forever, but made it...and was only 15 minutes late. Since we were stop and go, I was able to put the EMLA cream on her so it wasn't on for a long time just in case her port had to be accessed.
We were in triage 10 minutes later and had to get the dreaded finger prick....not a favorite with Haylee. I try so hard to give her choices and do my best to make it a smooth thing for her but she doesn't let me or herself. Lindsay and I tried the technique the nurses and Nonna used last week and she did it but not after a bit of a fight. Finally, after about 10 more minutes, she got it done with a minimal amount of tears. I wish it was something she could get over but it may not be something she ever gets used to. Everyone has something I guess.
As soon as we hit the clinic room, she was out the door with Lindsay finishing up her powerpoint presentation that she made for her class. Her and Lindsay were able to get it finished for the most part. Lindsay has a few more things to add to it. She's going to email it to me and I'm going to try and find a way to get it onto the blog. It's really cute because she took the pictures and it's all in her own words. Haylee was really excited about it :)
Dr. Abdella came in looking for Haylee a few minutes later. She was waiting for all the counts to come in but wanted to go ahead and check her out so we could get out of there quickly. I had 3 questions for her so I got those out of the way while we waited for Haylee and Lindsay to return:
Q - 1. Since I promised Haylee we would take her to the beach after all her scheduled admissions were over, when would we be safe to take her more than 2 hours away from the hospital (on a vacation to the beach)?
A - Since she will be scheduled for inpatient either May 29 or June 5 (depending on counts), given that everything goes according to planned during the last admission, and counts recover like they did last time, she should be good to go on vacation the last week of July into August. Once she's released from the hospital (end of June or first few days in July) she will be scheduled for a clinic visit about a week afterwards to check counts and then have a week or 2 for counts to completely recover. Good news!!! I'm hoping we can make it to a beach!
Q - 2. How is it determined that she is 'cured'? (Basically, when does the countdown begin and for how many years?)
A - Haylee has the rest of this consolidation, Consolidation 4 (4 weeks, give or take), and then nine 84-day cycles for Maintenance. Adding all that up, her remaining therapy is the next 2 years and 2 months (give or take a few weeks). The countdown to being officially cured begins at the end of all therapy (she will be 11). She will have to continue to show no signs of relapse or leukemia cells in her bone marrow for 5 years to be considered officially cured - she will be 16. We've got a long road ahead. With that being said, we go to the next question...
Q - 3. What were the results of the BMA taken 2 weeks ago?
A - The BMA done 2 weeks ago was being checked for a specific gene - the PML/RARĪ± fusion gene - which is what doctors look for in the diagnosis of APML. They use a method called PCR - Polymerase Chain Reaction - to check for the gene. Back in December, Haylee went into cellular remission meaning that no leukemia cells were present in her bone marrow on the cellular level. Up until this point, her BMAs haven't been tested for the specific gene mentioned above...until now. Checking for that specific gene is done on the molecular level, which is pretty much as far in depth as you can get without using the words 'complete remission' or 'cured'. Dr. Abdella went to find out if the PCR done on her BMA found anything and the answer is....NO!!! Haylee is now considered to be in molecular remission!!! Those were the sweetest words I've ever heard :) They will continue to check for the fusion gene with every BMA done during the remaining therapy and every year after that. As long as the fusion gene doesn't come back, ever, she will be considered cured after the above said time (see answer to question 2).
I know all this is a lot to process!! I explained it more in depth than what we discussed today to help you understand how some of this stuff works. I hope you are able to understand it to some degree :)
Haylee's counts look GREAT! She can finish the school year out at school, where she should be. She's also going to take the reading portion of the CRCT on Thursday even though the AP of her school said they would promote her to the 4th grade regardless if she takes it or not.
Her next clinic appointment is next Tuesday to check counts again. Hopefully her counts stay up, especially her hemoglobin and platelet counts so she doesn't have to be accessed (she's only accessed for chemo and to receive blood products, if needed). Dr. Abdella was impressed how well she's handled this round of chemo since the Idarubicin can tend to make kids feel yucky. She's not been feeling yucky so far!!
Have a great rest of the week! I'll update in a few days :)
May 14, 2012
Happy Mother's Day weekend
The fundraiser is still going on!! We really would like to reach our goal to ensure that all of our financial obligations are well taken care of. Please promote through Facebook, Twitter, and through email to get the word out!!! Thanks!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
What a busy week! Friday was the best day of chemo because Haylee was de-accessed and the chemo was ready for her almost right after she was checked in. Needless to say, we didn't have to wait too long. Lindsay took Haylee on an 'adventure' to get something together for me for Mother's Day. It was a stuffed dog and a coffee cup. It was too cute and she was excited to give it to me.
Haylee spent the night at Nonna and Papa's Saturday night. She enjoys spending the night over there. Adam and I had a much needed date night with the Zac Brown Band (thanks to Tammi and Albert for hanging out with us and to Amy for keeping Mason for us!!!).
Sunday, we hung out at home....it was a dreary day and we just lounged around. We met Nonna and Papa for dinner for Adam's b-day, Mother's day, and Father's day. It was a nice dinner and we all ate good :)
Haylee has a clinic appointmet tomorrow to check counts. I should also find out what the results of her last BMA are...cellular or molecular remission??? I'll let everyone know after tomorrow!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
What a busy week! Friday was the best day of chemo because Haylee was de-accessed and the chemo was ready for her almost right after she was checked in. Needless to say, we didn't have to wait too long. Lindsay took Haylee on an 'adventure' to get something together for me for Mother's Day. It was a stuffed dog and a coffee cup. It was too cute and she was excited to give it to me.
Haylee spent the night at Nonna and Papa's Saturday night. She enjoys spending the night over there. Adam and I had a much needed date night with the Zac Brown Band (thanks to Tammi and Albert for hanging out with us and to Amy for keeping Mason for us!!!).
Sunday, we hung out at home....it was a dreary day and we just lounged around. We met Nonna and Papa for dinner for Adam's b-day, Mother's day, and Father's day. It was a nice dinner and we all ate good :)
Haylee has a clinic appointmet tomorrow to check counts. I should also find out what the results of her last BMA are...cellular or molecular remission??? I'll let everyone know after tomorrow!
May 10, 2012
5/10/12 - A busy week of chemo
The fundraiser is still going on!! Please promote through Facebook, Twitter, and through email to get the word out!!! Thanks!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Haylee started chemo on Monday - only 3 doses this time around. She has already had the Idarubin during our very first admission so we kind of know what to expect. The difference between then and now is that she was very sick back then and now she's not. So far, she has had 2 doses and is doing very well tolerating it up to this point. It's orange and Haylee was told that her urine and tears could turn orange - she thinks that's so funny! So far, they haven't but she keeps a lookout!
Clinic on Monday went well, just long. She had an ECHO and EKG, which were both fine. Her counts were good - in the normal range. Triglycerides were a bit high (200) but way down from the week before. ATRA was started as normal so her triglycerides will vary for a while but as long as they are under 500, it's all good. Dr. Kellar and Stacy said that she looks great and we'll just keep pressing on! The port access went well...kind of. The access itself was GREAT...the best yet. She didn't cry, she wasn't restrained, and she didn't flinch when the needle went it. The problem was that the nurse wasn't getting blood return and kept having to push and try and move the needle around. Because of the pushing and pressure, she started crying because it was uncomfortable and painful. It seemed like it took forever but it was finally manuvered in the right position and she got blood return! Chemo was started and finished in no time.
Tuesday, both kids had dentist appointments for regular cleanings. They both did great and the cleanings went well. Haylee had a few spots that they were watching but she ended up pulling those teeth out herself.
Chemo again on Wednesday. The chemo itself is only 15 minutes long but we waited to have chemo hooked up for 2 hours (We got there at 10am and was back in a room by 10:25...long day...). One doctor has sign off for the chemo and a 2nd doctor has to release the orders. I'm sure I have no idea what I'm talking about when I say this but....I don't know why it takes so long for chemo to be released. I mean, how hard is it to sit down for 5 seconds and click 'release' or actually sign something? Again, I'm sure I have no idea what I'm saying. Haylee kept herself busy on the infusion side with Lindsay and a few other kids playing Monopoly while she waited. Our chemo takes place on the clinic side instead of infusion side because the chemo itself is so short and they want to be able to keep that chair open. They don't count wait time, I guess.
Haylee went to school this morning and I hope the day goes good. She said her stomach hurt but also said she thought it was because she was hungry. I had her eat something light and told her to call me if she needed me for anything. Hopefully she has a great day!!
Have a great rest of the week!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Haylee started chemo on Monday - only 3 doses this time around. She has already had the Idarubin during our very first admission so we kind of know what to expect. The difference between then and now is that she was very sick back then and now she's not. So far, she has had 2 doses and is doing very well tolerating it up to this point. It's orange and Haylee was told that her urine and tears could turn orange - she thinks that's so funny! So far, they haven't but she keeps a lookout!
Clinic on Monday went well, just long. She had an ECHO and EKG, which were both fine. Her counts were good - in the normal range. Triglycerides were a bit high (200) but way down from the week before. ATRA was started as normal so her triglycerides will vary for a while but as long as they are under 500, it's all good. Dr. Kellar and Stacy said that she looks great and we'll just keep pressing on! The port access went well...kind of. The access itself was GREAT...the best yet. She didn't cry, she wasn't restrained, and she didn't flinch when the needle went it. The problem was that the nurse wasn't getting blood return and kept having to push and try and move the needle around. Because of the pushing and pressure, she started crying because it was uncomfortable and painful. It seemed like it took forever but it was finally manuvered in the right position and she got blood return! Chemo was started and finished in no time.
Tuesday, both kids had dentist appointments for regular cleanings. They both did great and the cleanings went well. Haylee had a few spots that they were watching but she ended up pulling those teeth out herself.
Chemo again on Wednesday. The chemo itself is only 15 minutes long but we waited to have chemo hooked up for 2 hours (We got there at 10am and was back in a room by 10:25...long day...). One doctor has sign off for the chemo and a 2nd doctor has to release the orders. I'm sure I have no idea what I'm talking about when I say this but....I don't know why it takes so long for chemo to be released. I mean, how hard is it to sit down for 5 seconds and click 'release' or actually sign something? Again, I'm sure I have no idea what I'm saying. Haylee kept herself busy on the infusion side with Lindsay and a few other kids playing Monopoly while she waited. Our chemo takes place on the clinic side instead of infusion side because the chemo itself is so short and they want to be able to keep that chair open. They don't count wait time, I guess.
Haylee went to school this morning and I hope the day goes good. She said her stomach hurt but also said she thought it was because she was hungry. I had her eat something light and told her to call me if she needed me for anything. Hopefully she has a great day!!
Have a great rest of the week!
May 6, 2012
5/6/12 - Weekly Update
PLEASE CONTINUE TO PASS ALONG AND PROMOTE THROUGH FACEBOOK, TWITTER, AND TO ANYONE ELSE WHO MIGHT BE INTERESTED IN LENDING A HELPING HAND THROUGH HAYLEE'S YOUCARING WEBSITE. THANKS!!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
What a great week at home!!! Haylee has been in school since Wednesday and I went back to work, part time, as well. All 4 of us have had 'normal' lives since Wednesday (aside from Haylee not having any hair and her constant pill taking).
Haylee officially starts Consolidation 3 tomorrow morning. She has to have a few tests in the morning then shuffle upstairs to clinic to be accessed, have counts checked, and start chemo. Luckily, since she has chemo Wednesday and Friday too they will leave her port accessed for the week. She will have to switch from showers to baths, but it's all worth it!! It'll probably be a long day but not as long as when she was in the Arsenic phase. Wednesday and Friday shouldn't be as long since she's just having counts checked and chemo.
Haylee has been really enjoying being back at school!! It bums her out that she will miss 3 days next week, but we gotta do what we gotta do! At least she's going for the last couple of weeks. I ask her everyday how school is, if anyone gives her a hard time, etc. She said on Friday that sometimes kids stare at her - not the kids in her class but the little kids (I'm guessing K-1st graders?). She said it bothers her a little but that they just don't understand what she's going through. She's so smart and just takes everything that comes her way. Again, she's my hero...I'm not sure I could do and feel the way she does about it all if the roles were reversed.
I'll update tomorrow after she finishes chemo to let you know how she does. Happy Sunday!!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
What a great week at home!!! Haylee has been in school since Wednesday and I went back to work, part time, as well. All 4 of us have had 'normal' lives since Wednesday (aside from Haylee not having any hair and her constant pill taking).
Haylee officially starts Consolidation 3 tomorrow morning. She has to have a few tests in the morning then shuffle upstairs to clinic to be accessed, have counts checked, and start chemo. Luckily, since she has chemo Wednesday and Friday too they will leave her port accessed for the week. She will have to switch from showers to baths, but it's all worth it!! It'll probably be a long day but not as long as when she was in the Arsenic phase. Wednesday and Friday shouldn't be as long since she's just having counts checked and chemo.
Haylee has been really enjoying being back at school!! It bums her out that she will miss 3 days next week, but we gotta do what we gotta do! At least she's going for the last couple of weeks. I ask her everyday how school is, if anyone gives her a hard time, etc. She said on Friday that sometimes kids stare at her - not the kids in her class but the little kids (I'm guessing K-1st graders?). She said it bothers her a little but that they just don't understand what she's going through. She's so smart and just takes everything that comes her way. Again, she's my hero...I'm not sure I could do and feel the way she does about it all if the roles were reversed.
I'll update tomorrow after she finishes chemo to let you know how she does. Happy Sunday!!
May 2, 2012
5/1/12 - Unexpected news....
Back to the hospital we went today...only to be told that she could complete this consolidation OUTPATIENT!! We were sooo excited to hear that news! Ironically enough, I was going to ask if we could try doing this phase outpatient anyway.
Haylee started the day by not wanting to get her finger pricked for labs. We weren't prepared for it so it was a change she didn't like. Afterwards, we were sent to a procedure room so that she could be prepped for her bone marrow aspiration and lumbar puncture. Her port access went....better. She didn't have to be restrained, she kept her hands away, she didn't look and she didn't even flinch!! She's getting used to it.
Dr. Abdella came in to talk to us about her being outpatient and answered my questions. Haylee will start the Idarubicin chemo on Monday and have 2 more treatments on Wednesday and Friday. After that, she will have no more chemo for the rest of this consolidation. It will make her counts drop, may give her bad mouth sores, and make her nauseous and cause her to throw up. All that is managable from home. She has had this chemo before so we know what to expect.
Haylee is able to return to school for the rest of the school year with the exception of clinic appointments and if she's not feeling well. If she's feeling fine and her counts are low, she may still go to school but would have to wear a mask. Both Dr. Abdella and I said that would be up to her.
Haylee's triglycerides were high again so they put her on a pill to bring them down along with a lower fat diet. It'll be hard but manageable. The only time she will have to go down to the hospital is if she gets a fever or something else strange happens (fingers crossed on both that they won't happen).
Counts looked great!! I'll keep in touch over the next few days!
PLEASE CONTINUE TO PASS ALONG AND PROMOTE THROUGH FACEBOOK, TWITTER, AND TO ANYONE ELSE WHO MIGHT BE INTERESTED IN LENDING A HELPING HAND THROUGH HAYLEE'S YOUCARING WEBSITE. THANKS!!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
Haylee started the day by not wanting to get her finger pricked for labs. We weren't prepared for it so it was a change she didn't like. Afterwards, we were sent to a procedure room so that she could be prepped for her bone marrow aspiration and lumbar puncture. Her port access went....better. She didn't have to be restrained, she kept her hands away, she didn't look and she didn't even flinch!! She's getting used to it.
Dr. Abdella came in to talk to us about her being outpatient and answered my questions. Haylee will start the Idarubicin chemo on Monday and have 2 more treatments on Wednesday and Friday. After that, she will have no more chemo for the rest of this consolidation. It will make her counts drop, may give her bad mouth sores, and make her nauseous and cause her to throw up. All that is managable from home. She has had this chemo before so we know what to expect.
Haylee is able to return to school for the rest of the school year with the exception of clinic appointments and if she's not feeling well. If she's feeling fine and her counts are low, she may still go to school but would have to wear a mask. Both Dr. Abdella and I said that would be up to her.
Haylee's triglycerides were high again so they put her on a pill to bring them down along with a lower fat diet. It'll be hard but manageable. The only time she will have to go down to the hospital is if she gets a fever or something else strange happens (fingers crossed on both that they won't happen).
Counts looked great!! I'll keep in touch over the next few days!
PLEASE CONTINUE TO PASS ALONG AND PROMOTE THROUGH FACEBOOK, TWITTER, AND TO ANYONE ELSE WHO MIGHT BE INTERESTED IN LENDING A HELPING HAND THROUGH HAYLEE'S YOUCARING WEBSITE. THANKS!!
http://www.youcaring.com/fundraiser_details?fundraiser_id=1892&url=hopeforhaylee
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