The 2012 WSB Care-A-Thon was held yesterday and today at Children's Healthcare of Atlanta at Scottish Rite and Haylee is one of the children featured this year! She was interviewed yesterday live on the air by Neal Boortz and even though she was shy, she did great!! She was in our local county paper as well about the Care-A-Thon. Hopefully, in the next few months I will have a link to the live broadcast with Haylee, Neal, and Belinda. I've put the link to the WSB radio feature as well as the link to the local paper about Haylee below. There was a camera crew at the hospital as well who filmed us walking around the clinic area. I'm not sure if it aired and I can't seem to find it online anywhere.
During Haylee's hour of the Care-A-Thon, $97K was raised for the AFLAC Center and Blood Disorders. After her interview, Neal Boortz took a picture of him and Haylee and posted it to his Twitter account and it also went on the CHOA facebook page. She's everywhere!!!
2012 WSB Care-a-thon
http://www.barrowcountynews.com/section/34/article/16983
~Hope for Haylee~
July 27, 2012
July 21, 2012
7/17/12 - Maintenance started...check!
Haylee FINALLY started maintenance on Tuesday! I had some major concerns about the medications she's going to be taking so Dr. Abdella walked me through every question that I had and answered them thoroughly. She said Haylee was doing fine, she looked good, and her counts were great. I brought all the medications with me to clinic and she started everything right there in the exam room. No reactions thus far! She started ATRA 2x a day for 14 days, MTX 1x a week (13 pills), 6-MP 1x a day at night, Tricor 3x a day, and Bactrim 2x a day only Saturday and Sunday. Whew, that's alot to keep up with.
She will finish the ATRA while we are at the beach so thats 1 pill we can take away for a while. We have to keep her heavily sunscreened since all the chemo makes her skin sensitive to the sunlight. I guess I'll have to find a swim cap to put on her! Dr. Cooper wanted me to make sure that I put tons of sunscreen on her and to make sure it was hypoallergenic (haha!).
We're so excited to go to the beach! Mason starts PreK the Monday after we come back and Haylee will start 4th grade a week later. Unfortunately, she has clinic the 2nd day of school but will be able to attend most of the day. I'm so glad she will be able to start school with the rest of her peers and so is she!
She will finish the ATRA while we are at the beach so thats 1 pill we can take away for a while. We have to keep her heavily sunscreened since all the chemo makes her skin sensitive to the sunlight. I guess I'll have to find a swim cap to put on her! Dr. Cooper wanted me to make sure that I put tons of sunscreen on her and to make sure it was hypoallergenic (haha!).
We're so excited to go to the beach! Mason starts PreK the Monday after we come back and Haylee will start 4th grade a week later. Unfortunately, she has clinic the 2nd day of school but will be able to attend most of the day. I'm so glad she will be able to start school with the rest of her peers and so is she!
July 10, 2012
7/10/12 - Count check-up
Haylee's been doing so good this week!! It's been a nice long week; feels like we've been home for a month already and we LOVE it!
Haylee had her check up with Dr. Abdella today, just for counts and a physical. Counts were good so she doesn't have to wear a mask anymore :) Unfortunately, counts were not good enough for her to start maintenance today. Her platelets have to be at or above 100k and they were only 84k today. She has to go back next Tuesday to check counts again but Dr. Abdella is confident that all counts will be where they need to be to start maintenance next week.
Maintenance consists of an 84 day cycle of ATRA for the first 14 days, Methotrexate (oral chemo) once a week during each cycle, and 6-MP (Mercaptopurine - oral chemo) every day. Each cycle will have to be repeated 9 times. She will have to visit clinic monthly to check counts and a physical and every 3 months, she will have to have a BMA and LP just to check to make sure all is still well.
I did a little bit of research on the chemo she will be taking (I know, I know - I shouldn't do that) and it can be some pretty nasty stuff. Luckily the Methotrexate, which seems to be the worst of the 2, is a low dose (but has to take 13 pills of it at one time equalling 32.5mg). The 6-MP is considered the least nasty and given in a normal pediatric dose (75mg 5x a week and 50mg 2x a week). Crazy!! I talked to another mom who's daughter has/had the same leukemia as Haylee and she takes somewhat of the same doses as Haylee will take (she's 10 years older than Haylee) and said she does fine with them and no side effects to speak of. That made me feel better. We've got the beach vaca coming and I don't want to have to come back early or have her not feeling bad while we're there. I'm sure Haylee will do fine, but I'm a mom and I'll worry until I know she's going to handle it well.
The results of last week's BMA and LP came back CLEAN! There is no leukemia in her bone marrow or spinal fluid and she is still in molecular remission :) I noticed on her count paperwork today her diagnosis says 'APML - in remission, in maintenance. That was so good to see!
Prayers we can start maintenance next week! Have a great rest of the week!
WBC - 3580
HGB - 9.8 (Doc said it should come up by next week)
Platelets - 84k (These as well)
ANC - 1450
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
Haylee had her check up with Dr. Abdella today, just for counts and a physical. Counts were good so she doesn't have to wear a mask anymore :) Unfortunately, counts were not good enough for her to start maintenance today. Her platelets have to be at or above 100k and they were only 84k today. She has to go back next Tuesday to check counts again but Dr. Abdella is confident that all counts will be where they need to be to start maintenance next week.
Maintenance consists of an 84 day cycle of ATRA for the first 14 days, Methotrexate (oral chemo) once a week during each cycle, and 6-MP (Mercaptopurine - oral chemo) every day. Each cycle will have to be repeated 9 times. She will have to visit clinic monthly to check counts and a physical and every 3 months, she will have to have a BMA and LP just to check to make sure all is still well.
I did a little bit of research on the chemo she will be taking (I know, I know - I shouldn't do that) and it can be some pretty nasty stuff. Luckily the Methotrexate, which seems to be the worst of the 2, is a low dose (but has to take 13 pills of it at one time equalling 32.5mg). The 6-MP is considered the least nasty and given in a normal pediatric dose (75mg 5x a week and 50mg 2x a week). Crazy!! I talked to another mom who's daughter has/had the same leukemia as Haylee and she takes somewhat of the same doses as Haylee will take (she's 10 years older than Haylee) and said she does fine with them and no side effects to speak of. That made me feel better. We've got the beach vaca coming and I don't want to have to come back early or have her not feeling bad while we're there. I'm sure Haylee will do fine, but I'm a mom and I'll worry until I know she's going to handle it well.
The results of last week's BMA and LP came back CLEAN! There is no leukemia in her bone marrow or spinal fluid and she is still in molecular remission :) I noticed on her count paperwork today her diagnosis says 'APML - in remission, in maintenance. That was so good to see!
Prayers we can start maintenance next week! Have a great rest of the week!
WBC - 3580
HGB - 9.8 (Doc said it should come up by next week)
Platelets - 84k (These as well)
ANC - 1450
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
July 7, 2012
7/7/12 - Weekend Update
It's been great being home! Haylee was super tired on Wednesday. She wanted to go to Walmart and we needed to anyway for a few things. We walked her around the entire store then she came home and went to sleep about 6:45pm. We woke her up about 9pm to do some fireworks then she went back to sleep after that.
Haylee woke up refreshed Thursday morning. I took her around looking for a particular DS game she wants with no luck (but she got out of the house!). It's a pain for her to have to wear a mask outside of the house but she does it with no complaints. Hopefully on Tuesday her counts will be back to normal so she can keep the mask off.
I've been keeping an eye on her incision from her port removal and it's been draining, which I'm told, is normal. Yesterday, she was taking the bandage off to change it and it looked like the incision was opening! It scared me to death and even though I kept that as under control as possible, Haylee could tell I was nervous about something. I put another bandage on it and call clinic. They gave me the number to outpatient surgery and I left a message for the surgeon who performed the surgery. He finally called me back a few hours later and said they will leave the incision open a little so that it can drain, that I could put steri-strips on it (which I did prior to his phone call), she could shower as normal, and resume normal activity and the site would scab over and all would be well. He put my mind at ease and clinic will check it out on Tuesday. It has been looking better since I've been using the steri-strips.
Haylee's been feeling fine through it all too! She's been glad to be home and life is returning to normal as much as possible. We're actually looking forward to Tuesday so that we can get counts!
Have a great weekend! I'll update on Tuesday!
Haylee woke up refreshed Thursday morning. I took her around looking for a particular DS game she wants with no luck (but she got out of the house!). It's a pain for her to have to wear a mask outside of the house but she does it with no complaints. Hopefully on Tuesday her counts will be back to normal so she can keep the mask off.
I've been keeping an eye on her incision from her port removal and it's been draining, which I'm told, is normal. Yesterday, she was taking the bandage off to change it and it looked like the incision was opening! It scared me to death and even though I kept that as under control as possible, Haylee could tell I was nervous about something. I put another bandage on it and call clinic. They gave me the number to outpatient surgery and I left a message for the surgeon who performed the surgery. He finally called me back a few hours later and said they will leave the incision open a little so that it can drain, that I could put steri-strips on it (which I did prior to his phone call), she could shower as normal, and resume normal activity and the site would scab over and all would be well. He put my mind at ease and clinic will check it out on Tuesday. It has been looking better since I've been using the steri-strips.
Haylee's been feeling fine through it all too! She's been glad to be home and life is returning to normal as much as possible. We're actually looking forward to Tuesday so that we can get counts!
Have a great weekend! I'll update on Tuesday!
July 4, 2012
Happy 4th of July!
Haylee had a successful platelet transfusion around 11:30pm Monday night. Jill and I were nervous about if the vein would blow out so just in case, she ran the platelets through the IV machine so she could control the flow and it was successful! Haylee slept right through it.
We played the waiting game for surgery until about 1:15pm on Tuesday. Haylee couldn't have any food or liquids before surgery and she was ANGRY! She was very snippy and on edge all day, naturally. Surgery came to get her and she was in good spirits. She even went down with no Versed, no silly medicine at all; just all natural Haylee (and she was even giggly!). Even though I was nervous for her, she kept saying she wasn't nervous at all and that made me relax a bit. Nonna was there to keep me company and help keep my mind off the waiting while she was in surgery which was a HUGE help. The surgeon came to see us at about 2:45 and let us know everything went well! He said she had some scar tissue but not too bad, there was a little fluid and blood there which he sent off to be cultured for bacteria just in case (since she's been on an antibiotic for 23 days, it should cover any bacteria in there if there is any) and he gave us his opinion on the Power Ports (he hates them!). We went back to her room to wait for her to get out of recovery and be wheeled back upstairs.
Earlier Tuesday morning, Colleen peeked in and let us know that....HAYLEE WOULD BE GOING HOME AFTER SURGERY!!!!! The 'tomorrow' we had been waiting on for 1 1/2 weeks FINALLY arrived! While we were waiting for Haylee to get back upstairs, we packed up everything and loaded the car.
Haylee got back to the room about 4pm. She was awake and again, she was angry. She didn't want anyone messing with her. She had a reaction on her face to the tape they used to secure the breathing tube down her throat. It literally ripped some skin off her face almost like a burn. I was told to just put Aquaphor or Neosporin on her face to keep it moist. She drank 3 or 4 juice boxes and ate some crackers, Amanda gave her a dose of Morphine for the ride home, and Colleen gave me a prescription for Hydrocodone for any pain Haylee may have.
We got home around 7pm and Haylee was feeling good, but tired. She went to bed around 9pm and I crawled in bed with her just to keep my eye on her since I don't have a Pulse/Ox machine at home! Haylee woke up this morning feeling good! She still seems a little tired but in good spirits!
She has a clinic appointment next Tuesday for a physical, labs, and results on her BMA. Until then, she has to wear a mask any time she leaves the house and if she's in close quarters with anyone other than immediate family. The following week, she will go back to clinic for a physical, labs, and to start maintenance!
The road was long, long, long but the intensive part of it is over. Some days were bad, some days were really bad, but all in all most days were pretty good. She came out of all of this on top and on the road to a complete recovery. The huge amount of love and ongoing support that was shown to us during these past 7 1/2 months was so great and so positive that without it, things would've been harder to get through. We appreciate everything and everyone that helped us out financially, physically, and emotionally. Haylee still has 2 years of maintenance therapy to complete and then the 5 year countdown to cured begins after that. I will continue to blog 1-2 times a week to update on her progress.
Tuesday's Counts
WBC - 1370
HGB - 10.8
Platelets - 100k
ANC - 80
SEGs - 6
Monos - 21
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
We played the waiting game for surgery until about 1:15pm on Tuesday. Haylee couldn't have any food or liquids before surgery and she was ANGRY! She was very snippy and on edge all day, naturally. Surgery came to get her and she was in good spirits. She even went down with no Versed, no silly medicine at all; just all natural Haylee (and she was even giggly!). Even though I was nervous for her, she kept saying she wasn't nervous at all and that made me relax a bit. Nonna was there to keep me company and help keep my mind off the waiting while she was in surgery which was a HUGE help. The surgeon came to see us at about 2:45 and let us know everything went well! He said she had some scar tissue but not too bad, there was a little fluid and blood there which he sent off to be cultured for bacteria just in case (since she's been on an antibiotic for 23 days, it should cover any bacteria in there if there is any) and he gave us his opinion on the Power Ports (he hates them!). We went back to her room to wait for her to get out of recovery and be wheeled back upstairs.
Earlier Tuesday morning, Colleen peeked in and let us know that....HAYLEE WOULD BE GOING HOME AFTER SURGERY!!!!! The 'tomorrow' we had been waiting on for 1 1/2 weeks FINALLY arrived! While we were waiting for Haylee to get back upstairs, we packed up everything and loaded the car.
Haylee got back to the room about 4pm. She was awake and again, she was angry. She didn't want anyone messing with her. She had a reaction on her face to the tape they used to secure the breathing tube down her throat. It literally ripped some skin off her face almost like a burn. I was told to just put Aquaphor or Neosporin on her face to keep it moist. She drank 3 or 4 juice boxes and ate some crackers, Amanda gave her a dose of Morphine for the ride home, and Colleen gave me a prescription for Hydrocodone for any pain Haylee may have.
We got home around 7pm and Haylee was feeling good, but tired. She went to bed around 9pm and I crawled in bed with her just to keep my eye on her since I don't have a Pulse/Ox machine at home! Haylee woke up this morning feeling good! She still seems a little tired but in good spirits!
She has a clinic appointment next Tuesday for a physical, labs, and results on her BMA. Until then, she has to wear a mask any time she leaves the house and if she's in close quarters with anyone other than immediate family. The following week, she will go back to clinic for a physical, labs, and to start maintenance!
The road was long, long, long but the intensive part of it is over. Some days were bad, some days were really bad, but all in all most days were pretty good. She came out of all of this on top and on the road to a complete recovery. The huge amount of love and ongoing support that was shown to us during these past 7 1/2 months was so great and so positive that without it, things would've been harder to get through. We appreciate everything and everyone that helped us out financially, physically, and emotionally. Haylee still has 2 years of maintenance therapy to complete and then the 5 year countdown to cured begins after that. I will continue to blog 1-2 times a week to update on her progress.
Tuesday's Counts
WBC - 1370
HGB - 10.8
Platelets - 100k
ANC - 80
SEGs - 6
Monos - 21
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
July 2, 2012
7/2/12 - Quite a day
Today was just as the title says....quite a day. Haylee went through so much and it was physically and emotionally exhausting for her, me, and PawPaw (who was here for his weekly visit with Haylee and much needed support). She was stuck with a needle in her hand for an IV 3 times, an attempted port access (which we thought was successful), a port readjustment, and finally a successful IV on her inner forearm. That was 5 needle pokes, not counting the finger prick she got this morning. (I gave the short and condensed version because I just didn't want to live through it all over again. It was hard enough the first time.) She is going to be getting platelets tonight because they were 19k and her gums started bleeding some.
After all was said and done, tomorrow is going to be a long and busy day:
- Haylee is getting her port removed, BMA done, and LP with chemo done
- Surgery probably won't be until the afternoon sometime since she's considered an 'add-on' to the current schedule (which is why the need for the platelets as well because they won't perform surgery without platelets being above 50k)
- Nothing by mouth after 12am (no food, no liquids)
- Waiting, waiting, and more waiting
Counts were better today, but not good enough to go home.
WBC - 2560
HGB - 11.3
Platelets - 19k
ANC - 30 :)
SEGs - 1 :)
Lymphs - 84 :)
Monos - 14 :)
Shouldn't be long now!
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
After all was said and done, tomorrow is going to be a long and busy day:
- Haylee is getting her port removed, BMA done, and LP with chemo done
- Surgery probably won't be until the afternoon sometime since she's considered an 'add-on' to the current schedule (which is why the need for the platelets as well because they won't perform surgery without platelets being above 50k)
- Nothing by mouth after 12am (no food, no liquids)
- Waiting, waiting, and more waiting
Counts were better today, but not good enough to go home.
WBC - 2560
HGB - 11.3
Platelets - 19k
ANC - 30 :)
SEGs - 1 :)
Lymphs - 84 :)
Monos - 14 :)
Shouldn't be long now!
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
July 1, 2012
6/29-7/1/12 - A long weekend for Haylee and Nonna
Nonna was on vacation this past week and came early Friday to spend the weekend with Haylee. There wasn't anything going on for them to do so they pretty much had to entertain themselves and each other which was a feat, I'm sure!
They tried to re-access Haylee on Sunday afternoon with no luck. Leah tried the best she could as well as the day nurse, Amanda, and neither had any luck. Leah's opinion was that the port needed to come out because there was no use having it in if it couldn't be accessed. Haylee has a clinic appointment along with a BMA and LP with chemo injection so I plan to talk to the doctors about them taking it out permanently. Nonna and Leah said that despite how difficult it was for Haylee, she did AMAZING! Nonna had to stand in my place and I've been there, done that so I know how difficult it is to watch and have to deal with my child in pain and crying for them to stop. As hard as it is for me to deal with it, it had to be harder for my mom since she's the Nonna. I get my strength from my parents - I know that my mom was just as strong as I have to be during that tough time even though it's brutal to deal with (Thanks Mom, you were there for her and stayed strong. I know it hurt to watch and go through that today but you were wonderful!).
Counts didn't get any better over the weekend until Sunday's counts. They look promising but neither Haylee nor I are getting our hopes up until we're told she's being discharged.
Friday's Counts
WBC - 1670
HBG - 11.6
Platelets - 40k
ANC & SEGs - 0
Lymphs - 97
Monos - 2
Saturday's Counts
WBC - 1880
HBG - 12.4
Platelets - 29k
ANC & SEGs - 0
Lymphs - 98
Monos - 1
Sunday's Counts
WBC - 1790
HGB - 12.2
Platelets - 21k (only went down 8k which is good)
ANC - 20 :) :)
SEGs - 0
Lymphs - 90 (the lowest it's been yet)
Atypical - 5
Monos - 4 :)
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
They tried to re-access Haylee on Sunday afternoon with no luck. Leah tried the best she could as well as the day nurse, Amanda, and neither had any luck. Leah's opinion was that the port needed to come out because there was no use having it in if it couldn't be accessed. Haylee has a clinic appointment along with a BMA and LP with chemo injection so I plan to talk to the doctors about them taking it out permanently. Nonna and Leah said that despite how difficult it was for Haylee, she did AMAZING! Nonna had to stand in my place and I've been there, done that so I know how difficult it is to watch and have to deal with my child in pain and crying for them to stop. As hard as it is for me to deal with it, it had to be harder for my mom since she's the Nonna. I get my strength from my parents - I know that my mom was just as strong as I have to be during that tough time even though it's brutal to deal with (Thanks Mom, you were there for her and stayed strong. I know it hurt to watch and go through that today but you were wonderful!).
Counts didn't get any better over the weekend until Sunday's counts. They look promising but neither Haylee nor I are getting our hopes up until we're told she's being discharged.
Friday's Counts
WBC - 1670
HBG - 11.6
Platelets - 40k
ANC & SEGs - 0
Lymphs - 97
Monos - 2
Saturday's Counts
WBC - 1880
HBG - 12.4
Platelets - 29k
ANC & SEGs - 0
Lymphs - 98
Monos - 1
Sunday's Counts
WBC - 1790
HGB - 12.2
Platelets - 21k (only went down 8k which is good)
ANC - 20 :) :)
SEGs - 0
Lymphs - 90 (the lowest it's been yet)
Atypical - 5
Monos - 4 :)
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
Please pass this along to any and everyone who can help! If you are aware of any other way to get the fundraiser out in the community, please let me know!
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