Our princess...

(Riley got a trunk of Princess dress up clothes for Christmas from one of her little cousins, and informed me it was what she had always wanted...funny I've never heard that. We even had some arrows on hand to use as a magic wand...whatever works!!)

We just dont' have good luck with holidays...only this time it was Hayden. He was one sick little man! He started running fever Sunday and by Monday morning it had gone up to 102.8, took him in and found out he had strep. So, we decided it would be best to seperate him from Riley so she wouldn't get it. Hayden came back home Christmas night, only after we gave Riley strict instructions to not hug or kiss him until he was better. This killed her...she kept asking every ten minutes if Hayden was better so she could give him a kiss. He is doing much better now, thankfully.

We had a very trying clinic visit yesterday. Our appointment was at 1, we were still sitting in the first waiting room at 2:30. I checked at the desk at one point, and she just said it was a little busy in the back. Then someone else saw us still sitting in there, and informed us we were supposed to have checked in with the back waiting room to have her blood drawn. Would have been nice if someone told us this. Apparently when you don't have to be rushed down to have a procedure, things go differently in the clinic. Good to know. So, after seeing how annoyed I was they got things rolling fairly quickly. Riley was scheduled to start the next phase of treatment yesterday, and all of this was dependent on her blood count levels. Her white blood count was a little low, as well as her red blood count...but not too low to really worry. Her platelets had dropped a little, and the big # they worry about is her ANC which was 780...and it had to be 750 to start the treatment. So we just barely slid through. I never really have grasped what the ANC count really is, I just know that is the count that tells us if she has enough of the infection fighting cells hanging around. This # should be in the thousands, so when it's not we have to really be careful of what we are exposing Riley to. The phase of treatment we started is called Standard Interim Maintenance, and lasts for 8 weeks I believe. Yesterday Riley was scheduled to get her Vincristine through her port, and also received a flu shot. We still take the Mercaptopurine pill every night, and now started another chemo pill, Methotrexate, that we will take every Wednesday night. Riley also started a 5 day round of steroids...sounds scary but 5 days shouldn't effect her too much. We hope!! The good news is we don't have to go to clinic next week...yea!!!! We will continue to take the chemo pills at home, and then in two weeks will go back for Vincristine and also her make up spinal tap, as well as the PEG shots in her legs. Then I believe we get another week or two off from clinic trips.

Riley did so well with everything yesterday...the waiting and the poking. We are so proud of how well she is handling everything. I wanted to buy her something for being such a big girl, but there wasn't much we don't have...especially after Christmas. So, as I was treating myself to a new pair of shoes we found some sparkly jewel like thingys for her to put in the holes of her crocs. She loves them!! Go me!!

We hope everyone had a wonderful Christmas. We did, even if we did have to be seperated from our little man for a day.

Oops...

I did a very bad thing...but not on purpose. Riley had her clinic visit, and did so well. She hardly even cried when they were accessing her port, or putting the butterfly in her button as she calls it. Of course she cried prior to, due to the anticipation...but once they inserted the needle she didn't even flinch. She is so brave. The doctor finally decided we needed to have a chest x-ray to try to find out why Riley is still having a nasty cough for over a month now, along with a runny nose. We were sitting in the room, waiting for the x-ray results before we headed down to the PACU for her final spinal tap. Well, I innocently gave Riley a piece of gum...not such a good idea. Apparently the anesthesiologists treat gum like it is food, and obviously she isn't supposed to eat before her procedures. I really had no idea...but I do now. It did end up to be a good thing, because the doctors were going back and forth on if Riley would be able to be put to sleep with this cough and runny nose...so she now gets to have a little break to get well. Her x-rays showed she has a lower respiratory infection, and is on a 5 day course of meds that should help to knock it out. Thankfully missing this final spinal tap doesn't interfere with Riley's treatment plan, we can continue as planned. We will have to make it up, but it won't be for another couple of weeks due to the holidays.

Riley's blood counts were good. Her platelet count was a little lower than last week, but still in an okay range. She did receive the shots of PEG (Aspariginase, another chemo medicine) in her legs, and we had to wait around for 2 hours after to make sure she didn't have a reaction...which thankfully she didn't. So, because of my boo-boo what was going to be a long day...was not. It all worked out.

While we were waiting for Riley to receive her shots, she got to pick out a present out of this humongous pile. One of the clinic patients and her brownie troop provided presents for all the patients. (The same girl, I might add, got to spend Tuesday in clinic with Craig Biggio. That's right...I missed seeing him by 1 day. Heartbreaking!!) Riley decided she wanted the princess make-up set...it was special. Especially the pretty blue lip gloss and oh so gorgeous earrings. Beautiful!!! She insisted on wearing them the rest of the day.

Thank you everyone for the continued encouraging words and prayers. Oh, and the radiothon last week raised over 1 million dollars...wow!! Thank you to everyone who had something to do with this. We can only hope that they find a cure for cancer very soon.

We hope everyone has a very Merry Christmas!!!

-Josh, Kari, Riley and Hayden

Happy Holidays!!

Riley had a so-so day, yesterday. She just didn't feel good...she has been complaining about her stomach hurting for the last couple of days. I thought for sure the doctor's would be able to tell me why, no such luck. All they did was ask about her bowel movements, but she's not eating so why would she be pooping? Her blood counts were all good, so they weren't really all that worried about it. I made them test her urine, thinking she could have a UTI but that came back okay. But then Riley never ceases to amaze me...this morning for breakfast she wanted Funyuns. So, her stomach must not hurt too bad!! I told her she couldn't have that for breakfast, but she informed me they are just like onions but with the fun. Ok, that's makes it better to have them for breakfast? I gave in...who am I to argue when my favorite thing for breakfast is cold pizza!!

Riley did have her 3rd of 4 spinal taps yesterday. She is such a trooper. She slept most of the morning while we were waiting for them to take her back, she woke up right as they were calling her name. Which was good because everything seemed to take forever yesterday...I did not have my patience on board like I usually do.

When we were finished with everything we went to Target to try to get some Christmas shopping done. That didn't happen because the whole time Riley was complaining that she wanted to go home. Then, as we were coming into Hallettsville she decides that now she wants to go shopping...there is no where to shop in Hallettsville. We did end up going to one store on the square downtown, just to say we did.

Also, this week begins the Cure Kids Cancer Radiothon at Texas Childrens Hospital with 93Q! So if you are in the Houston area set your radio dial to these radio stations– The New 93Q (92.9 FM), Country Legends 97.1 (FM), 106.9 The Point (FM) and the New 107.5 K-HITS (FM) from Thursday, December 13 to Saturday, December 15. They are raising money to benefit Texas Children's Cancer Center, and research to cure children's cancer. If you want to donate you can call, although I don't have the phone #, or you can go online to http://www.snowdropfoundation.org/. They broadcast live from the clinic, and will be interviewing some of the kids and their parents. I have heard it is quite inspiring.

Please continue to pray for Riley and all the kid's battling this horrible disease. They are my heroes!!!

Easy come, easy go...

Thankfully I am beginning to sound redundant with the following statement...we had another great doctor visit today. Things are much easier without having to deal with the IV sticks...thank goodness for buttons! There is a wonderful group of people at Texas Children's called Child Life Specialists, they are there to distract and inform the children about what is being done to them. We had a wonderful lady, Quinn, with us that very first long day in the ER. She was there with Riley the whole day and made everything much more tolerable...she even helped with Hayden. There is also another wonderful lady, Dana, that works in the Cancer Clinic. Today, Dana sat with us in the room and explained to Riley how they would access her "button", and she even had a doll with a button to go through what Riley would go through. I know it helped to ease Riley's mind, and it was very informational for me as well...being that we are all new to this.
Riley's blood work looked good, but her white blood count was a little elevated at 9.63. This is still in the normal range, but is higher than it has been previously. She has had a cough and starting to get a runny nose, so they are thinking it was elevated due to her body trying to fight this from becoming an infection. Because she hasn't been running fever, they weren't too worried about the higher number, but we will have to be super carefull that she doesn't get exposed to something right now.
Riley is getting a break from her regular chemo medicine, Vincristine...but is still taking the chemo pill every night. She has been doing surprisingly well taking the pill, although sometimes she can't get it down so she chews it...either way works. I believe she is handling this new medicine well, sometimes while she is sleeping she is restless and moans like her tummy hurts but she never wakes up to complain...so it can't be too bad.
Thank you everyone for the continued thoughts and prayers...they are being answered. Riley is getting stronger everyday. Last night she and Hayden were actually arguing over toys. It has been a while since that has happened, and I loved every minute of it!!

Riley Elizabeth

Riley had such a great weekend. She is feeling so much better, and is up playing more and more everyday...and talking non stop. This is the Riley we are used to!!
Some of our friends in Brenham set up a blood drive for Riley this past Saturday, and it was such a huge success they have scheduled a make-up one for all the people that weren't able to wait in line. Thank you everyone who donated, and those who attempted to donate. Just the fact that you took time out of your day to come and sit in line to donate means the world to us. Riley had such a blast running around and playing...she was still talking about it yesterday. I believe I have heard a rumor that they are attempting to set one up for all the Hallettsville people, so I will let you know when I have a date for that one.
Riley informed me last night that she didn't need to go see the doctor anymore because she wasn't sick. I hated to break her heart and tell her we will still need to go see the doctor even when she feels good. I know that's a hard concept for children, but we want her to stay well...especially throughout the holidays.
Thank you again everyone...it was great to see all of you!!!

Princess Riley