December 29, 2010

I know it has been awhile since the last post...I apologize, the holidays have been crazy the past couple of weeks! Taylor is doing great and should hopefully be coming home next week sometime. This time around has been a lot easier on her than the last, no fevers, no getting sick and her spirits seems to be a lot higher. She's been making it a point to go to the teen meetings that have during the week and taking the younger kids to the playroom when she gets a chance to...she is great with kids, so I think that is something good for her to be doing.

It is unfortunate that she had to spend Christmas in the hospital this year, but we made a point to try to make it as enjoyable for her as possible. We set up a little Christmas tree and what decorations we could put up. Ashley and I went down Christmas Eve and brought her gifts down there to her and a lot of my family came down to see her...my brothers & sisters, nieces and brother/sister-in-laws. She got to spend Christmas day with her mom, so it was a busy weekend for her I guess. I appreciate everyone taking the time to make her day a little bit brighter! Hopefully she will be out in time for Jenna's birthday, I know Jenna would love to have her sister home to help celebrate it!

The picture is of Taylor with her cousins Savannah and Jessica. We have some more we took and will put them up as soon as we get them downloaded. Hope everyone had a Merry Christmas and enjoys their New Year this weekend!

December 9, 2010 - Round 2

Well to start off with some good news...Taylor's results from her bone marrow and spinal tap came back negative which means she is now considered in remission since there are no leukemia cells in her blood!!! She does still have to continue with her scheduled rounds of chemo though, according to the doctors the more they do, the less likely it is to come back.

Unfortunately the spinal tap didn't make her feel so hot this round. Unless she was laying down, she had pretty bad migraines and I think between that and the shot of chemo in her spine, it made her physically sick. The first time she was in the hospital and laying down all day, doped up with benadryl and pain meds, but this time she was sent home with nothing. On the plus side, her boyfriend Justin was able to spend plenty of time with her while she was home so I'm sure that helped to take her mind off somethings. And no, I didn't have to meet him at the door with the shotgun or have the one-on-one, man-to-man talk with him...this one I actually approve of haha...

Yesterday she had to go back in to start her 2nd round of chemo. She is on the same treatment plan as last time, but they are starting them at night instead of during the day. I stayed with her last night and today and so far so good. She got the one medicine that always made her sick, but for now all is good...but that could also be because she hasn't eaten anything today! She ate enough last night to make up for it though, I think she tried to get in all she could in case the medicine did make her sick today. I told her last night that I wanted her to try to get out of the room more and maybe meet with and encourage some of the other little kids that are in here...now that she knows what to expect maybe she can help someone else or talk to someone who may have it a little harder than her. She is great with kids, so I think it might be good for her. But for now, my Taybe-loo is doing good!

Can't wait to see some of you all on Saturday for her bowling benefit!! Again, can't thank you all enough for the love, prayers, support and encouragement!

December 1st

Today Taylor had to go to clinic and have another bone marrow biopsy and spinal tap done (standard procedure). I talked to her a little before lunch and she sounded great, said she had a little pain when she stood up but nothing too bad. Her Leukemia doctor, Dr. Cooper, said that he looked at her leuemia blasts and they were still at 0 so that is excellent news.

Her blood counts are up and if they continue to stay up, they will put her back in the hospital next Wednesday to start her 2nd round of chemo. I asked her how she felt about that and she said that she wasn't upset about it at all, that the sooner she goes in, the sooner she gets out and gets all this over with...so that's the way to look on the positive side of things! All in all, things are as good as they can be right now...so keep the prayers up and thank you everyone for everything!

Thanksgiving Day - Got to Come Home!

Taylor got to come home today!! I stayed with her last night and they told us there was a good possibility she would be able to come home for Thanksgiving as long as she did not get any more fevers and she wasn't feeling sick. So, this morning they let us know they were discharging her...what a very Happy Thanksgiving Day for sure! Today at about 1:30 I took her to her grandmothers house where they had dinner cooked, and I believe she might have made up for all of the eating she wasn't able to do over the last few weeks haha. She has been feeling good and looks great and that is all that matters.

She will probably only be home for 2-3 weeks and has to go to clinic once a week until then. Her mom is going to celebrate Christmas with her and Jenna while she is out, so that will be nice. I will probably wait to do mine with them on Christmas Eve or the day of just so it will still sort of feel like Christmas for her. I hate that she won't be home fto celebrate it with me, but we didn't think she would be home for today so we are thankful for at least that!

We hope everyone had a happy and safe Thanksgiving...Happy Holidays!

November 19, 2010 - Scary Day Today!

Well Taylor still can't get rid of the cough she has had since day one and it seems to be progressively getting worse, which is making her physically sick. It's not necessarily bad she is getting sick, since the only thing coming up is the congestion and phlem (yummy!)...it's just hard watching her as she gets sick and not being able to do anything to help it. They have given her a couple of breathing treatments to help, but even that only works for a hour or two. They did a chest xray and said everything looks good, but I swear if anyone heard the way she sounds they would certainly question the doctor's judgement!
Today they decided to put her on some new medication to help control her fevers, which didn't at all turn out to be a good idea. Michelle (her mom) called me a little after lunch to fill me in what happened. A few minutes after they gave her the medicine she told Michelle she couldn't breathe. Michelle thought she just had stuff caught in her throat from coughing up everything and told her to just swallow whatever it was, not knowing she really couldn't breathe! Apparently she had an allergic reaction to the medication which caused her throat and lips to swell and her body started turning purple...they immediately buzzed the nurse who ran in, saw her condition and called about 10 more nurses and doctors in. They gave her a quick shot of benadryl which reversed the side effects pretty quickly and needless to say, they will not be giving her that again! Scares me to think what would have happended if no one was there with her, or what if Michelle went to the cafeteria or bathroom for a minute?! So, when I got to the hospital this afternoon I made Taylor go through a "what if" scenario in case she is ever alone in a situation like that. They have a code blue button which I told her to pull if that ever happens again, I don't care if that button is only to be used by the dr's or for some other reason!!

Well, Ashley is staying with her tonight so hopefully Taylor has a good night. She stayed with her Weds night and since she can't sleep without a fan she brought a little desk one with her. Taylor said she is sleeping with it on from now on...I guess it drowns out some of the background noises.

I still wake up every morning thinking and hoping this is all just a dream. I hate that my baby is sick, that she can't eat when and what she wants, she can't be at home or that I just can't go get her and hang out with her when I want. I guess all I can do is just continue to pray and know that every day that passes is one day closer to her getting past this.

November 17, 2010 - A Little Lighter...

Well the day finally arrived for Taybo to have to shave her head. It had been thinning out pretty good over the last few days, but I was told that when she got up this morning it had come out pretty bad overnight. It was definitely rough on her at first but she seemed to be doing ok about it by this afternoon. I wish that I had been there when she had shaved it but she wanted to surprise me...and imagine my surprise when I walked in the door not knowing she had even shaved it in the first place!! She still looks as beautiful as ever...if not more...and how could she not when she has her daddy's tan, big brown doe eyes and long thick eyelashes!

And she must be her daddy's girl because her dinner request for the night was venison marinated in Dale's sauce with sauteed mushrooms and onions lol...

She seems to be doing decent since the last day of the first round of chemo. She has had a couple of days where she has been sick, having to have several blood transfusions and a fever off and on...but she has kept her head up through it all. Again, we want to thank all of the family and friends that have stopped by to see her, it certainly makes her day and helps to keep a smile on her face.

November 12, 2010 - GOOD Day Today!

We finally got the bone marrow results back today and she does NOT have to have a bone marrow transplant...that is the best thing we have heard in awhile! The doctors were very happy with what they saw and said that her blood cells look great. She will come home in approximately 2 1/2 to 3 weeks given that her blood counts are where they need to be and that she is feeling ok. It's not as soon as we hoped it would be, but I am almost more comfortable with her being at the hospital and knowing she is getting the best care possible here!!

When she gets home, she is going to have to take extreme care especially with her hygiene. We have to make sure her sheets are changed at least every day or every other day, no reusing towels, no leftover foods, etc. She can leave the house and go out places but has to wear a mask and avoid crowds...no movies on an opening night, no mall on black Friday, no restaurants at prime eating time, etc, etc...She will also have to be carrying a thermometer with her at all times and checking her temperature constantly. Any sign of a fever could mean an infection in the blood which spreads extremely fast in which case she would have to be rushed to an emergency room a.s.a.p.

When she comes back for her second round of chemo they will do another bone marrow test on her to make sure everything is still clear. As long as everything still looks good, she will continue on with her treatments as planned to help make sure the leukemia doesn't come back, but she will technically be considered in remission at that point...so that is what we are going to continue to pray for!

Today was a little bit of a rough day for her, not too terribly bad though...she was just running a mild fever and feeling a little weak. They gave her a blood transfusion and within an hour she was getting some color back. I was totally disappointed when I got here though...I found out that Cindy Crawford came by the kids rooms today to pay them all a visit. Then I was made to feel really old...Cindy wanted to meet Taylor and she said she didn't know who that was and went back to sleep haha. Who doesn't know Cindy Crawford?!?!?! She did still get an autographed picture of her though and it was made out to Taylor, so that was kind of nice. So, please keep the prayers coming because they are totally working for us!!

November 11, 2010

Today is Taybee's last day of her first round of treatment! I spent the night with her last night and throughout the day with her today and am glad to know we got to this day with not too many bad days. We have to wait for her blood counts to be where the doctor's want them at (so she doesn't get any infections at home) before she can come home. Once she comes home it will probably be about 2 weeks before she goes back in for her 2nd rounds of chemo...I am not looking forward to that time to come, but at least I know with every treatment she is that much closer to beating this and getting through to the end of it. Hopefully I will get to spend Thanksgiving with both of my girls together!

She had a little bit of a fever today and they had to give her platelets and put her back on her fluids so she doesn't get dehydrated. It's a little bit of a set back but something the nurses and doctors jumped on immediately to take care of. This is by far the best place for her to be at right now and although I don't wish this on anyone, if you have a child going through something like this, I highly recommend coming here!

Thank you to everyone again for everything! I know we keep saying it, but we can never thank anyone enough for being there for us.

November 6, 2010

Today is Taylor's last day for 2 of the drugs she is being given. We think the medicine that she had to receive every other day is the one making her sick, as those are the only days she has been sick and she has felt fine on the others. So, hopefully the next few days she will be able to rest and eat without feeling nauseous.

Next week is back to the regular work schedule and I am dreading it. Although we would like to be at the hospital everyday and be at her side 24/7, it is just not possible...and it probably isn't healthy either. Michelle has been spending most nights with her and it's not exactly set up for more than one person to stay at a time. Her job is letting her work Tues and Thurs from her office and then she can work from her laptop the rest of the week. Although we know she wants to be there everyday, it's probably good for her to get away from the hospital a little bit. She has worked it out to where her dad will stay with Taylor on Tuesdays and then between Ashley and I, we will take over Weds nights and Thursdays and then one night on the weekends. Thankfully the holidays are coming up which will make it easier to be able to stay down there and see her more.

We are also having to keep an eye on Jenna, my 11 year old daughter. She is having a hard time adjusting to her sister being sick, her mom and sister not being home everyday, having to stay with her Grammy so she can get to a from school, not being with me on the weekends...and it's difficult too because she wants to spend one on one time with her sissy at the hospital but it's hard to do because she has so many visitors in and out on the weekends. So I need to make sure that she feels included and her feelings and thoughts are being heard. She is a smart girl, and although it's hard on her she knows what is going on and will adjust over time.

I just hate my baby not being home and not being able to get them whenever I want to. She was always my shadow no matter where I went or what I was doing...it is definitely an eye opening experience and makes you realize and appreciate what is important a whole lot more!

November 2, 2010

Yesterday they put Taylor's port in her chest, did her bone marrow aspiration and spinal tap. Thankfully she was put under for all of it. While she was under, they also injected chemo into her spine as a precautionary measure...the leukemia likes to hide out in places like that, so they try to prevent it from doing so. She came out of the surgery a little groggy but doing great. They hadn't let her eat or drink since midnight so as soon as she came back to the room she wanted the Zaxby's she had requested earlier. We made her eat slowly to make sure everything stayed down, which it did, so that was great! She said her shoulder was a little sore from how they had to lay her to do the bone marrow test, but beyond that there was very little pain or discomfort.

Today they started her on the first round of chemo, which consists of 3 different medicines. One she has the first 5 days, another on the 1st, 3rd and 5th day, and the last she has to have twice a day for 10 days. She got sick not to long after they started the chemo but we don't know if it's from the medicine or the bagel w/creamcheese and 2 slices of pizza she scarfed down in the matter of an hour...hopefully it was the latter. After she had got sick she felt a little better and slept pretty good throughout the night. I can deal with my Taybee having a cold, being tired and just not having energy...but being physically sick hits the heart especially hard because I know this is the only the beginning of what is in store over the next few months.

We have received plenty of calls, texts and emails from friends and family checking in on her. When things settle down a bit, we would love to be able to thank each and every one of you personally for everything. It is times like these when you realize just how great of friends you have, how family can be brought together and just how loved your child really is. Thank you to everyone for your love and support, it is certainly helping to get us through each day!

Here is Taylor supporting the Dawgs for the game...such a good sport :)

October 29, 2010

The results came in today around noon as to what type of leukemia Taylor has. She has AML, the more aggressive form. Knowing that she has leukemia is bad enough, but now knowing she has aggressive leukemia and will have a rough few months coming up is even worse. Even though the doctors describe to you all of the side effects of treatment, I don't think any parent can prepare themselves for what is to come. You always expect to be able to help your child with any problem they may have...but this problem leaves me completely helpless. Althought I accept she has leukemia and it has sunk it, just the words "my daughter has leukemia" or "my daughter has cancer" is a hard pill to swallow.

Taylor's first question was if she were going to lose her hair or not. With ALL there was a high probability that she wouldn't...but with AML it is almost guaranteed that she will, and will start to within only a couple weeks of starting the first round of chemo. The doctors have said she will not be able to go back to school the remainder of this year, she will be at too high of a risk of getting sick. She will be able to go through a Home Bound program that will keep her on track with all of her credits and it is only 3 hrs worth of work a week...she seemed terribly disappointed about that part of it ;-)

On Monday she is supposed to have a bone marrow aspiration, spinal tap and have her lines (catheder) put in her chest, which is what they will administer her chemo treatments through. They will also be able to draw blood through the lines which means NO MORE I.V.!! She is excited about that part, she is so paranoid about her I.V. coming out and doesn't want to get stuck everytime they need to draw blood. So, for right now they are giving her plenty of antibiotics, fluids and blood transfusions. She seems to be in high spirits for the most part, especially when she has her family and friends come in to see her. You can tell it's a little harder on her at night when everyone goes home and it gets quiet...but we continue to send our prayers up and hope the good Lord takes care of her.

October 28, 2010 - The Worst Day Ever

Most people wonder how leukemia is found and for us we had an angel on our side...Taylor's grandmother "Grammy".

My daughter, Taylor, had been sick for about 2 weeks, with what we all thought was just a cold. She is constantly getting strep throat and the flu, so there was not much alarm or surprise that she was sick. First she was taken to a clinic that said she had an upper respiratory infection, and that if she was not better within a couple of days she would need to be taken to her regular doctor. So, a couple of days later her Grammy took her to see her regular doctor and they said she had an ear infection and upper respiratory infection. Well, Grammy decided to be persistant and made the doctor do blood work on her. When the results came back the doctor had said she was anemic and wanted her to go to a lab to see what form of anemia she had. At this point Taylor was not to thrilled with Grammy for making her get poked and prodded for blood work...but she has since been forgiven and then some! The lab drew their blood and said they would be contacting myself or her mom by 5 p.m. that afternoon with the results. Taylor's regular doctor called her mom, Michelle, and gave the devastating news...it was leukemia...and they wanted her to be rushed to Scottish Rite in Atlanta for further testing. Michelle called me and gave me the news, I was completely crushed and at a loss of words just trying to wrap my head around everything...considering this was also my birthday, this was no way I wanted to celebrate it.

Taylor was taken to Scottish Rite but was only told she was to have further testing done. Nobody wanted to tell her the news until we were 100% sure as to what was going on, so as not to alarm her and have her asking 100 questions we wouldn't be able to answer for her. About 10:30 p.m. the doctors came in to confirm that it was in fact leukemia and naturally, Taylor broke down and lost it. It is amazing how resiliant kids are though, because by 1 a.m. she was asking questions and wanting to know if she could visit the other kids the next day.

We were originally told she could have one of two types of leukemia...ALL which is an acute form that would require monthly treatments that spanned over 2 1/2 -3 yrs or AML, the more aggressive form that meant chemo would need to be started immediately and would be week long monthly treatments that would need to be done for 5-7 months. The results on which type she had would not be in until the next morning, and the saying "the waiting is the worst part" is an understatement.