Happy Birthday Riley!!!

Today our Riley-bee turns 4 years old!! That is so hard to believe...but so exciting. We celebrated at Nana and Pop's house yesterday afternoon...even crafted a birthday cake out of some leftover wedding cake. Riley thinks we baked it while she was sleeping...she'll never know. We will also celebrate Tuesday with Nani and Papo...a whole week of birthday celebrations!! We are now getting ready to leave for Houston for her doctor's appointment. She is scheduled to get Vincristine, and also start another 5 day round of steroids. I'm not sure if these are count dependent drugs, so depending on how her counts are today we may or may not do this.

The wedding was beautiful and fun . Naturally I did not get any pics on my camera, it was a very busy day. I'm sure someone got some and will send them my way, and I will post them. Hope everyone has a great week!!

We're home!!

We got sprung from the big house around 3:30 this afternoon, and then got to sit in traffic for 2 hours. It was a special treat. We are now in Brenham at Nana and Pops' house getting ready for the big wedding this weekend...there's lots to be done. We are so thankful for all of your prayers and good wishes for Riley to be able to be the most beautiful flower girl you ever did see. I will post pictures next week. Until then...everyone have a wonderful weekend.

Riley-1, Fever-0

So, Riley has finally been fever free for over 24 hours...yahoo! Her fever at 4am...a cool 96.6. Did you guys hold a prayer vigil and not invite me?! It worked whatever you guys did. Her ANC this morning was down a bit at 100. So, we will wait and see what the doctors says...to go, or not to go. That remains the question. I'll keep you posted...in the meantime keep the prayers coming!!!

Some pics from our week so far

We may be getting closer...

Riley did have another temp early this morning of 101.1...but the cut off for what they consider fever is 101. So, I think we may be getting closer. Her ANC this morning is 120, up from 40 on Monday. Her white count is 2,100, hemoglobin is 9.6 (pretty low), and platelets are 186. We haven't seen the doctor yet, so I don't know what, if anything, will change. I will post again when we know more. Later, gators.

Fever, Fever go away...

Riley had another 4am temp spike of 101.8. Not sure why she only seems to spike at 4am, and the rest of the day she stays nice and cool. They weren't going to check her blood counts today, they saw no need since she is still running fever and we are obviously not going anywhere any time soon. The fellow (aka-doctor in training) that comes in bright and early in the morning had nothing new to offer us. We just have to let this viral whatever run its course. Today is the last day that Riley can receive the antibiotic Vancomycin, so they may throw in another one to spice things up a bit. We'll see what happens. In the meantime, everyone set your alarm clocks for 3:30am and start saying some prayers for Riley to not have another 4am fever. We are quickly running out of time to be able to be out of here by Saturday!!
Today also marks the 9 month anniversary of Riley being diagnosed with Leukemia. It truly does seem like the time has flown by...which is always a good thing. We are very lucky that she has mostly done so well with everything. I just hope the remainder of her treatments go so well, and continue to fly by. We are all so ready to be on the other side, looking back and reminiscing on this journey...knowing that everything will have gone how we want it.

Nothing new to report

Same ol' - Same ol' going on here at Hotel TCH. Riley continues to feel great, but spiked another fever early this morning of 102.9. Her ANC has gone up to 40, not so high but at least it is going up...although it can't really go any lower than 0. So, we will be here until no more fevers and her counts continue to go up. She is still on 2 antibiotics, just to protect her from anything else taking advantage of her low counts. The good news is nothing has grown from her blood culture they took Saturday in the ER...they took another one this morning when she spiked again, so we'll see how that one does.
That's all our news for now. We are spending most of our days riding laps around the 9th floor on a princess tricycle, and painting crafts...just having fun passing the time. Until tomorrow...

Our luck ran out...

Well...I am writing to you from the confines of Texas Children's, room 925. Yesterday Riley was running a fever pretty much all day, but it never got over 100.6. I called the doctor around 4, just to make sure it was okay to continue to monitor the situation...she suggested we bring her into the ER because it would probably be the middle of the night when her little body would decide to spike higher. Riley and I got to the ER around 6:30, where things moved at a super slow snail's pace. We finally got to room 925 at 1:30 this morning. Fun times!
Riley looks and acts like she feels great. They are thinking it is something viral, but are giving her 2 antibiotics because she spiked another fever this morning of 101.2. When they checked her counts in the ER her white count was 2.4, which isn't high but it isn't low...the kicker was her ANC was 0. We would have been okay to go home...but she has nothing in her to fight away infections. So, here we sit. We know we have to wait 48 hours from the last temp spike...so that puts us here until at least Tuesday. We HAVE to be out of here by the weekend for Shelby's wedding...even if I have to sneak her out in my bag. Please, please say some prayers for our Riley-bee, and I will update again when I know something more.

Riley's still on chemo vacation

It was confirmed that we will continue to hold off on Riley's nightly chemo pills and recheck her labs again in 1 week. Riley gets so excited each night when she asks if she has to take her pills and I tell her no...it just makes her day. Mainly because for her nightly pill, 6mp, she has to have an empty stomach. We have to wait 2 hours after eating to take it, and then wait another hour before she can eat again...and it never fails an hour and a half into the 2 hours she is starving and begging me for food. So, needless to say, Riley is enjoying her chemo-free vacation - and will continue to for as long as she can.

Counts are still low

So, Riley had her blood rechecked today and while the numbers are up from last week...they are still not where they need to be. Her white count is up to 1,500 from last weeks 900. Her platelets are at 200, and her hemoglobin is 11.9. I found an ANC calculator online, and I have calculated it to be 200...we'll see how close I was when they call me back. I have a call in to the Leukemia nurses to see what the plan of action will be...although I'm fairly certain she won't be able to start back up on the chemo quite yet.
Riley continues to feel great...I think the break from chemo is helping in that aspect. Please continue the prayers for Riley-bee to stay well...we want to stay far away from TCH until we are scheduled to return on the 28th for her clinic appointment. Next weekend is the big wedding, and Riley is so looking forward to prancing around in her pretty dress...it is all she talks about. Also, send up some prayers for Paige...she is at MD receiving her 3rd round of chemo. She had a bone marrow aspirate done yesterday and she is still cancer free!!! While we are all sending up prayers, there is another little boy that was diagnosed last week with T-cell ALL. He is family to one of Josh's family friends, and is also being treated at Texas Children's. His name is Tanner Jorden and he is 2 1/2...and cute as can be. His website is www.caringbridge.org/visit/tannerj . So, go show them some love if you get a chance.
I will let everyone know if anything has changed once I hear back from the nurses/doctors...whether you really want to know or not. ;-)

2 steps back...

Just when you think everything is going great...you get a slap in face to be brought back to reality. Riley had her blood work done locally today, and her counts are all very low. Her white count is 900, normal is around 5,000 (I think)...and her ANC is 144 (they like to see this # around 750)...so she is considered very neutropenic. Meaning she has nothing to fight away infections, so we have to keep her away from large crowds and, obviously, sick people. She feels great, though, you wouldn't think anything is wrong just by looking at her. Due to her low numbers, we also have to stop all chemo meds that we are taking at home until we re-check labs next week. Being neutropenic also means any sign of a fever, and Riley is automatically admitted to the hospital. So, please please pray for Riley to stay well and bounce back quickly from this setback. It's kinda scary to me for Riley to not be taking any chemo at all right now...we just have to hope and pray that those mean ol' Leukemia cells don't take advantage of our chemo break.
Hayden is doing better. He was still running a slight fever this morning, and still has ulcers on his tongue and throat. So, we are going to keep him away from Riley for at least one more day...just to be sure.

Fun times

We had a fun, but busy holiday weekend...we were only home long enough to either change clothes or sleep. Friday we got to hang out at Nani and Papo's with Uncle Jairus, and his friends Natalie, Meeghan and her fiance Josh. We played, we ate, we swam...we even went to church. Riley loved having all that extra attention, and put on quite the show for everyone. Saturday Josh and I took the kids to the parade in Shiner...were sitting kind of by ourselves, so I was worried that nobody would throw candy out for Riley and Hayden. Boy was I wrong...we had so much candy the kids got tired of going to pick it up. Hayden was in hog heaven, he just kept picking it up and sticking it in his mouth...wrapper and all. After the parade the kiddos went to spend the night with the gang at Nani's house, and Josh and I went to spend the night at his fishing camp. Sunday when we got home we helped work in his grandmother's yard...she is getting ready for a new fence so there was a lot of hard work involved to get it ready. It was a group effort, everyone pitched in and it looks great now. The kids enjoyed riding 4-wheelers and racing around the pasture. I had my first close encounter with a snake...it tried to attack me. Not really, but it scared the poo out of me. Apparently it was only a measly little grass snake (garner/garter whatever you call it) but it came really close to my foot. A snake's a snake, people.

Waiting for the parade to start

Hayden with his hands full of candy

Now we are spending our days trying to recuperate from the weekend. Hayden started running a pretty high fever late Sunday night...they think it's strep, so he has gone to stay with Nana for a couple of days. We are keeping our fingers crossed that Riley doesn't get it...that's all we need. She has been having the best summer...there's no slowing her down. It's scary to think that next month my baby girl will be starting school...how is that already possible?!?!

Say a few prayers that all these nasty bugs going around stay away from Riley. We want to stay away from Houston for as long as possible. She gets her labs checked locally this week, and then goes back for chemo on the 28th.

**just talked to my mom (Nana) - Hayden has stomatits, not strep. She took him to see Dr. Draehn this morning because he wasn't getting any better, and his eyes and mouth were getting swollen...and he said it was definitely not strep. He has a bunch of ulcers on his tongue and going down his throat, which is what stomatitis is. It is very contagious so I am glad we separated him and Riley when we did. Although, it is tough to not be there for my little man...he needs his mommy, but so does Riley. I need two of me!! I hate cancer...

Summer Fun

The Hallettsville KC's donated money to Riley, so we attended their meeting last night. Our angels are not ones to sit still and quiet for long periods of time, so thankfully the meeting wasn't too long and then we got to enjoy a good bbq dinner. Thank you KC's!!!