Sorry I haven't blogged in a while. Things have been going super well and clinic is the same everytime! I hope everyone enjoyed seeing her on TV thru the link. She did a great job!! We were so proud :)
Her last day of clinic went great! Dr. Poochie got his clown cookie cake from Nonna and him and Haylee went around the clinic floor looking for it (it was in our room the whole time). The clowns were a big part of making clinic fun for Haylee. She looked forward to Tuesdays and Fridays because of them. Maggie showed me how to do the PICC line dressing change so we didn't have to drive her down for a 15 minute dressing change. Seems easy enough! Maggie gave me 2 of everything in case I messed up!
We had a good weekend! We're wanting to go up to Helen for our last weekend together for a while. The kids would have a good time up there! She went back to school today and was sooo excited that I let her ride the bus. I was a little nervous, but I have to trust her.
She will get to go to school this week only until Thursday. Friday, she has a bone marrow aspiration and then we are scheduled to go back into the hospital on Tuesday, April 3. I'm going to see if they will let her keep her PICC line for a little while longer since she's doing so well with it. We're mentally preparing ourselves for it. She's doing fine with it and I'm getting there. This will probably be a bad round. It's common for nausea, vomiting, possible mouth sores, and frequent high fevers (102-104). I'm not looking forward to it but it will have to get bad before it gets better.
~Hope for Haylee~
March 26, 2012
March 20, 2012
3/20/12 - The link to Haylee's news story
Here's the link to Haylee's interview that aired on Fox 5 in Atlanta on Monday evening. She did great!! Happy First Day of Spring!
http://www.myfoxatlanta.com/dpp/health/FOX-Medical-Team-Tech-Kids-20120319-pm-pk
Hopefully, this will take you straight to the video. Her CNN interview is tomorrow. I'll post that information as soon as I get it.
http://www.myfoxatlanta.com/dpp/health/FOX-Medical-Team-Tech-Kids-20120319-pm-pk
Hopefully, this will take you straight to the video. Her CNN interview is tomorrow. I'll post that information as soon as I get it.
3/19/12 - Haylee's TV debut!!
Clinic was just like any other normal Monday - long. EKG, counts and chemistry was good today and infusion was started just after noon. Kayson was there today so Haylee had someone to play with (even though she is 4 years younger than Haylee). She got a good bit of school work done and Maggie did a dressing change (which are getting easier and easier as they come since they have to be done 2x a week). Stacy said that Haylee looked good and we are in the homestretch of our last clinic week. I should find out today a schedule for the next 2 weeks and when she goes back inpatient.
I got a phone call today from a hospital representative letting me know that Haylee's Fox 5 interview would be during the 5:00 hour of the news tonight during Health Watch. She was AWESOME!! We recorded it and I watched it 3 times after the original airing. She wasn't too shy and did a laugh that was great! I should have a link to the interview emailed to me today and I will post it for everyone that missed it as soon as I can.
Emory eye doctor check-up appointment is tomorrow and then infusion. Another long day!
I got a phone call today from a hospital representative letting me know that Haylee's Fox 5 interview would be during the 5:00 hour of the news tonight during Health Watch. She was AWESOME!! We recorded it and I watched it 3 times after the original airing. She wasn't too shy and did a laugh that was great! I should have a link to the interview emailed to me today and I will post it for everyone that missed it as soon as I can.
Emory eye doctor check-up appointment is tomorrow and then infusion. Another long day!
March 16, 2012
3/16/12 - A good message enclosed
Clinic was super busy today! They only had 2 infusion nurses and 24 patients (no Maggie today :( )!! Haylee and I were put on the clinic side with one of the clinic nurses, Ann. She's just as fabulous as Maggie! The clowns showed up today and made us laugh! Lindsay has some repeating hippo app on her iPad and Haylee borrowed it and her and the clowns played with it for a while. After she was hooked up, she was trying to play her DS but everytime she bent her arm, the alarm went off on the machine. That happened for about 15 minutes. She got frustrated with it but finally figured it out. She went and played the Wii for a while and before we knew it, she got her flush and it was time to go home. Infusion flew right on by for once!!
We got our grocery shopping for a few weeks out of the way so it didn't impact our weekend (I HATE grocery shopping!). Haylee went down to play with Savannah and all is well :) Still no word from Fox 5 about Haylee's interview. I watch it everyday just in case they forget to call me (and I would be MAD if they did!). I'll let everyone know as soon as I find out!
A dear friend sent me an email today with a great message and I would like to share it with you. She said she thought of my tub side conversation with Haylee and sent it to me. If ever in doubt about anything, remember this statement and it will all make sense. (Thanks, Dana, for sharing! It's a great message and really made me think.):
We got our grocery shopping for a few weeks out of the way so it didn't impact our weekend (I HATE grocery shopping!). Haylee went down to play with Savannah and all is well :) Still no word from Fox 5 about Haylee's interview. I watch it everyday just in case they forget to call me (and I would be MAD if they did!). I'll let everyone know as soon as I find out!
A dear friend sent me an email today with a great message and I would like to share it with you. She said she thought of my tub side conversation with Haylee and sent it to me. If ever in doubt about anything, remember this statement and it will all make sense. (Thanks, Dana, for sharing! It's a great message and really made me think.):
"To get something you never had, you have to do something you never did". When God takes something from your grasp, He's not punishing you, but merely opening your hands to receive something better. Concentrate on this sentence: "The will of God will never take you where the Grace of God will not protect you."
Have a great weekend!!!
March 14, 2012
3/14/12 - Local news interview
Haylee went down to clinic with Nonna today and went well. According to Haylee, it's Child Life month at the hospital (and maybe everywhere?). That explains the CNN interview. My mom called me today because Lindsay said Beth Galvin from Fox 5 in Atlanta was at the hospital and may want to interview Haylee about the Child Life Specialists. Turns out she DID interview her and she will be on the news sometime this week! I'm supposed to get a phone call from Fox 5 letting me know when the story will air and as soon as I know, I'll post the information about it in case anyone wants to check it out. I'm not sure if it will be online or not for those of you far away. I'll look into it! The CNN interview with Brittany is scheduled for next Wednesday during clinic. I'll miss that interview, too but I've got to work when I can. I'm thankful for my mom for giving me the opportunity to work a few days a week and for helping me out like she does and has been during our daily clinic appointments :)
I had the meeting with Haylee's school about the 504 plan. Basically, it makes accomodations for her for test taking (like CRCTs) and for other reasons that may come up. During CRCT week (if she's there) she will have the opportunity to be in a small group, have extended time to take the test, and frequent breaks if needed. It was a good meeting but I wanted to be more prepared about knowing if she would be able to attend that week. They are very supportive of Haylee and I couldn't ask for her to be in a better school than Auburn. From the administrators to the front office staff to her teacher and former teachers....they are wonderful all around!!
I had the meeting with Haylee's school about the 504 plan. Basically, it makes accomodations for her for test taking (like CRCTs) and for other reasons that may come up. During CRCT week (if she's there) she will have the opportunity to be in a small group, have extended time to take the test, and frequent breaks if needed. It was a good meeting but I wanted to be more prepared about knowing if she would be able to attend that week. They are very supportive of Haylee and I couldn't ask for her to be in a better school than Auburn. From the administrators to the front office staff to her teacher and former teachers....they are wonderful all around!!
March 13, 2012
3/12/11 - Cameo in an interview?
Monday's clinic was long as usual. Stacy (one of the PAs) did come in and see Haylee and everything is still going good. We discussed briefly about her next inpatient stay. She could go in as early as the first week of April. In a way, I hope she does so we can get a weeks jump on everything but in a way I don't want her to so she gets another week of school and freedom that she won't get for a long time. She will get a bone marrow aspiration as early as the 30th but results wouldn't be back until 4/2 at the earliest. If she's still in remission, she could start Consolidation 2 that week. The only way I see that happening is if they can get everything moving that fast. Counts still looked good :)
Brittany came by and visited with Haylee for a few minutes. Apparently, CNN wants to do a story about Child Life and Brittany would be the one being interviewed for the story. She asked both Haylee and I if Haylee could be a part of the story! Brittany said she thought Haylee would be great because she's so animated and photogenic. How neat will that be for everyone, especially Haylee? People will really get to see how great Child Life is and my baby will be a part of that! It won't be a TV spot or anything...probably print article which I guess could be seen online. I don't have all the details yet but I will share them as I get them.
Maggie had to do a dressing change on Haylee's PICC line today. I tried to get Haylee to let Molly (one of the AFLAC clinic nurses) do it since we were just sitting there waiting around with nothing to do, but she refused....she wanted Maggie!! I stayed while it was being done which I haven't before. It's very similar to the CVL dressing change except there's this little piece that keeps the line in place that sticks to her skin and the line isn't stitched up. When Maggie was getting ready to start cleaning the area, she and I both noticed what looked like an ulcer on her arm just below the insertion site. Dr. Keller was called over to look at it. He seemed a little puzzled by it but since it wasn't inflammed or seem to bother her, he said just to clean it up and change the dressing at the end of the week to check on it again. Maggie used the Biopatch to cover the insertion site as well as the 'ulcer' to see if that helped. She hasn't complained about it and seems to be fine.
Brittany came by and visited with Haylee for a few minutes. Apparently, CNN wants to do a story about Child Life and Brittany would be the one being interviewed for the story. She asked both Haylee and I if Haylee could be a part of the story! Brittany said she thought Haylee would be great because she's so animated and photogenic. How neat will that be for everyone, especially Haylee? People will really get to see how great Child Life is and my baby will be a part of that! It won't be a TV spot or anything...probably print article which I guess could be seen online. I don't have all the details yet but I will share them as I get them.
Maggie had to do a dressing change on Haylee's PICC line today. I tried to get Haylee to let Molly (one of the AFLAC clinic nurses) do it since we were just sitting there waiting around with nothing to do, but she refused....she wanted Maggie!! I stayed while it was being done which I haven't before. It's very similar to the CVL dressing change except there's this little piece that keeps the line in place that sticks to her skin and the line isn't stitched up. When Maggie was getting ready to start cleaning the area, she and I both noticed what looked like an ulcer on her arm just below the insertion site. Dr. Keller was called over to look at it. He seemed a little puzzled by it but since it wasn't inflammed or seem to bother her, he said just to clean it up and change the dressing at the end of the week to check on it again. Maggie used the Biopatch to cover the insertion site as well as the 'ulcer' to see if that helped. She hasn't complained about it and seems to be fine.
March 11, 2012
3/11/12 - The daily grind starts back tomorrow
Friday was another good day in clinic. The clowns came to play! My mom can't stand the clowns but Haylee and I think they are hilarious! Dr. Pucci's the best. Clinic went off without a hitch!
The weekend was a good one...very nice and laid back. We all went to see "The Lorax". It was pretty cute. Haylee laughed alot and so did Adam and I. Mason had never been to the movies before and he did GREAT! During the previews, he kept saying he wanted to go home so we thought we were gonna have to leave early but he made it and he just sat there and stayed quiet. We were so proud!
Haylee and Mason played outside Sunday afternoon...it was sooo nice out! During Haylee's bath time on Sunday, she asked me if Mason was going to get leukemia. I told her that I didn't know but that probably not. She said she hoped he didn't get it but again wondered out loud why she had to get it. I explained to her that God works in mysterious ways and that sometimes He gives us obstacles that make us grow stronger. She wanted to know why He made a bad thing happen to her. I said again about how sometimes bad things happen to us so that we learn to be stronger and learn to deal with and overcome all bad things that come our way in our lives. She seemed to understand and be happy with that answer. We had a very nice weekend nonetheless!
Tomorrow is EKG/doctor visit/infusion day. It should be just another manic Monday ('I wish it were Sunday...cause that's my fun day'....haha!).
The weekend was a good one...very nice and laid back. We all went to see "The Lorax". It was pretty cute. Haylee laughed alot and so did Adam and I. Mason had never been to the movies before and he did GREAT! During the previews, he kept saying he wanted to go home so we thought we were gonna have to leave early but he made it and he just sat there and stayed quiet. We were so proud!
Haylee and Mason played outside Sunday afternoon...it was sooo nice out! During Haylee's bath time on Sunday, she asked me if Mason was going to get leukemia. I told her that I didn't know but that probably not. She said she hoped he didn't get it but again wondered out loud why she had to get it. I explained to her that God works in mysterious ways and that sometimes He gives us obstacles that make us grow stronger. She wanted to know why He made a bad thing happen to her. I said again about how sometimes bad things happen to us so that we learn to be stronger and learn to deal with and overcome all bad things that come our way in our lives. She seemed to understand and be happy with that answer. We had a very nice weekend nonetheless!
Tomorrow is EKG/doctor visit/infusion day. It should be just another manic Monday ('I wish it were Sunday...cause that's my fun day'....haha!).
March 8, 2012
3/8/12 - Still going well :)
We're almost done with this consolidation - can you believe it!? Tomorrow, Haylee will have 2 weeks left of daily clinic visits. I'll actually miss it because they get 2-4 hours of our day, then we go home instead of being inpatient everyday. And we'll miss Maggie - she's absolutely fabulous! My mom made brownies for Maggie and we took them in today. They were gone quickly! Thanks Nonna!!
Yesterday and today's clinic went well. Haylee and I actually got out of clinic today by 12:40pm - the earliest so far!! Hopefully tomorrow will be the same! On our way out, I spoke with the appointment scheduler and she made sure Haylee would see a doctor next Monday. That really bugged me that we didn't see one this past Monday. I don't know what happened.
Haylee's been doing really well with school. For the past 2 weeks, she's been done with all of her work on Thursdays. She's been seeing the teachers in the hospital almost daily as well as 2 appointments a week with the homebound teacher from the county. All the teachers are really doing great keeping her on track and pretty much up to par with the rest of her class. If the scheduling goes the way it should for the next consolidation, she should be able to take the CRCTs at school with maybe 1 day of test taking at home (she may have a bone marrow aspiration that day).
Yesterday and today's clinic went well. Haylee and I actually got out of clinic today by 12:40pm - the earliest so far!! Hopefully tomorrow will be the same! On our way out, I spoke with the appointment scheduler and she made sure Haylee would see a doctor next Monday. That really bugged me that we didn't see one this past Monday. I don't know what happened.
Haylee's been doing really well with school. For the past 2 weeks, she's been done with all of her work on Thursdays. She's been seeing the teachers in the hospital almost daily as well as 2 appointments a week with the homebound teacher from the county. All the teachers are really doing great keeping her on track and pretty much up to par with the rest of her class. If the scheduling goes the way it should for the next consolidation, she should be able to take the CRCTs at school with maybe 1 day of test taking at home (she may have a bone marrow aspiration that day).
March 7, 2012
3/6/12 - What's been going on the past few days?
Clinic has been going well the past few days and the weekend was quiet as well. We hung out as a family this weekend, not doing anything in particular.
Monday, Haylee had her EKG (which was normal) then we went upstairs for clinic. For some reason, we weren't scheduled to see a doctor, just infusion. We went ahead back to the infusion side and let the doctors and nurses work it out. We never did see a doctor on Monday, but they discussed her in their little room, signed off on her chemo, and waved at us later in the day. I guess nothing had changed in their eyes. I will have to talk with them next Monday though...I have a meeting next Wednesday to discuss CRCT testing and a 504 plan for her. I can't even pretend I know what that means because I don't! I know its an education plan but I thought we already did this. What do I know, right!? Haha!!
Tuesday, I opened at work and it was picture day. I had the kids' pictures made together and I'm so excited about getting them back! They looked sooo cute! Haylee went to clinic with Nonna and the only thing negative was that the chemo wasn't signed off on for that day (or probably the rest of the week). We hung out with good friends of ours, Durena and Jerry, for dinner. I think my kids are in love with Durena!! Or she was just like a shiny new toy haha!
The past few days have been good and Haylee is doing well!!
Monday, Haylee had her EKG (which was normal) then we went upstairs for clinic. For some reason, we weren't scheduled to see a doctor, just infusion. We went ahead back to the infusion side and let the doctors and nurses work it out. We never did see a doctor on Monday, but they discussed her in their little room, signed off on her chemo, and waved at us later in the day. I guess nothing had changed in their eyes. I will have to talk with them next Monday though...I have a meeting next Wednesday to discuss CRCT testing and a 504 plan for her. I can't even pretend I know what that means because I don't! I know its an education plan but I thought we already did this. What do I know, right!? Haha!!
Tuesday, I opened at work and it was picture day. I had the kids' pictures made together and I'm so excited about getting them back! They looked sooo cute! Haylee went to clinic with Nonna and the only thing negative was that the chemo wasn't signed off on for that day (or probably the rest of the week). We hung out with good friends of ours, Durena and Jerry, for dinner. I think my kids are in love with Durena!! Or she was just like a shiny new toy haha!
The past few days have been good and Haylee is doing well!!
March 3, 2012
3/3/12 - Updating from the past few days
Sorry I haven't blogged in a few days...Haylee's been doing well and life has been moving on as it was during the first part of this phase. We hope to keep her out of the hospital until she is scheduled to go back! Fingers crossed!
My mom took Haylee to clinic Thursday so I could work and Friday so I could take care of some things for myself. Both days went well. Thursday morning around 4am, Haylee woke me up saying that her hand was itching and burning a little and I noticed a rash on her hand. I told her to get the heat pack and use it on her hand and I would have Nonna talk to Maggie about it at clinic. Turns out the doctors think its from the ATRA (go figure!) and we should just keep an eye on it for oozing and itching. She hasn't complained about the itching since that day, so that's promising. Her H/H teacher, Mrs. Deal, came by Thursday afternoon and worked with her on the last part of her schoolwork for the week. They were able to get it knocked out rather quickly and she was done for the week!
Friday's clinic was pretty much that she could do whatever she wanted since she had no work to do. Kayson was there and her mom made cupcakes for Dr. Seuss's birthday. Since I missed it, Kayson sent a cupcake home to me, too. What a little sweetie!!! Kayson and Haylee played some, and then clinic was over.
We went to dinner as a family to Red Lobster (yum!) and then came home to battle the storms. The storm moving straight for our area weakened some as it moved and then ended up passing a few miles north of us...we lucked out! Hope that everyone else was safe from the storms as well!
My mom took Haylee to clinic Thursday so I could work and Friday so I could take care of some things for myself. Both days went well. Thursday morning around 4am, Haylee woke me up saying that her hand was itching and burning a little and I noticed a rash on her hand. I told her to get the heat pack and use it on her hand and I would have Nonna talk to Maggie about it at clinic. Turns out the doctors think its from the ATRA (go figure!) and we should just keep an eye on it for oozing and itching. She hasn't complained about the itching since that day, so that's promising. Her H/H teacher, Mrs. Deal, came by Thursday afternoon and worked with her on the last part of her schoolwork for the week. They were able to get it knocked out rather quickly and she was done for the week!
Friday's clinic was pretty much that she could do whatever she wanted since she had no work to do. Kayson was there and her mom made cupcakes for Dr. Seuss's birthday. Since I missed it, Kayson sent a cupcake home to me, too. What a little sweetie!!! Kayson and Haylee played some, and then clinic was over.
We went to dinner as a family to Red Lobster (yum!) and then came home to battle the storms. The storm moving straight for our area weakened some as it moved and then ended up passing a few miles north of us...we lucked out! Hope that everyone else was safe from the storms as well!
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