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

Hair today, gone tomorrow...

Riley is officially a member of the beautiful bald head club, and now those big brown eyes take center stage. I think I fell in love with her all over again...she looks so adorable. I'll admit I was a little nervous when they fired up the clippers, but Riley loved it and never took her eyes off the mirror. When she was all through she said "Mommy, I am still pretty!" like she was surprised, I told her you don't need hair to be beautiful. Then it was daddy's turn in the barber's chair, and I think she liked watching all his hair fall to the floor...she was just smiling ear to ear.

Our clinic visit went well, just a lot of sitting and waiting. Riley did have another spinal tap, she will have another 3 in a row. This is just to protect the spinal fluid from any leukemia cells. After she woke up from her procedure we went back up to clinic so Riley could get her chemo, and she also had to have the shots in her leg again. Once they did the shots, we had to sit around and wait 2 hours in case she were to have an allergic reaction to the medicine. Thankfully she was able to eat during this, and devoured a hamburger and then part of daddy's lunch, too.

We did receive the official word that Riley is in remission!!! We started the next phase of treatment, Consolidation, and it's fairly similar to the the last phase. We will still go every Wednesday for Vincristine and also have weekly spinal taps. The only new thing is Riley will now have a pill to take every night at bed time. It is another chemo medicine, Mercaptopurine. Then she will have the shots of PEG in her legs every couple of weeks, there will be a total of 4 doses of this...I think.

Once again thank you everyone for the encouraging words and prayers...they are being answered!!! I will try to get some more pictures of Riley tonight with her new look...she really does look adorable.

Buttoned with love...

I am so glad that is over. Riley is finally equipped with one up and running button ( we are borrowing this term for the port from our friends the Franklins. Their daughter Olivia battled cancer and won, with help from her button). Riley is thrilled to have her button, because now she won't have to have the straw (IV) in her hand for each clinic visit. Isn't it fun using the child lingo for medical procedures. Riley did very well, even though she wasn't able to eat all morning. We arrived in Houston at 9:30, and she was taken back to the OR at 10:45. While we were waiting something odd happened...our daughter was up and playing. We were definitely treading in unchartered waters, and I loved it!!! We were finally called back to the recovery room at 12:30, and were told that everything went perfectly. Until we had to wait for an hour and a half for the doctor to read the x-ray to make sure the placement was okay. I've said it before and I'm sure I will say it a million more times...it's so much fun being on someone else's time. Especially when we are dealing with doctors. Our doctor went straight into another case, and they were waiting for him to come out to read the x-ray. When they finally got a hold of him, he said he had asked a different doctor to read it...and obviously they hadn't. Luckily, everything was in it's correct place and we were finally released at 3:00.

Now we are just being bums in the hotel room. We had considered going out on an adventure tonight, but now staying in is sounding better and better. We have to stay in Houston for Riley's clinic visit and lumbar puncture in the morning. Riley's feels good, she is still playing with all of her new toys. The only bad thing is the placement of the "button". It is placed under her left arm, so we are have quite a time trying to pick her up. Which because they placed the IV in her foot while she was in surgery...she is determined that the foot will no longer work, so we were having to lug her around everywhere. Not that this is unusual from any other time, but this time she thought she had more of a reason to be chauffered in our arms. Which we will gladly oblige...for now.

Also, the part we weren't really looking forward to is upon us....Riley's hair loss. In the last couple of days it has really been falling out. You can barely brush against her and you have hair all over you. There are only a few remaining strands on the top, the parts that don't touch the pillow, so tomorrow we are going to visit the Hospital's beauty shop and have it shaved off. It will make things so much easier. She is so tired of having it in her mouth and all over neck and shoulders. It will be hard to see it go, but I know it will be back. I will post pictures tomorrow when we get home. Wish us luck!!

I don't even have the words...

My sister, Jen (Nenni), works for Dell Financial Services in Austin. When her co-workers found out about Riley being diagnosed with Leukemia, Jen's friends Christie and Cory started sending out emails to spread the word about Riley and all the goings on. The response to these emails were overwhelming. People got together to make signs and cards wishing Riley the best. Even the executives of Dell were doing finger paints to make a sign for Riley...unbelievable. Without even asking people started donating money, and they had collected a rather large amount of money in a very short amount of time. They then took some of that money and went on a major toy shopping spree at Target. They bought every thing imaginable. Riley has been playing with them non-stop since we got to Brenham late last night. Nenni and Riley played Hungry, Hungry, Hippo for what seemed like forever. Today, she and Aunt Shelby played Polly Pocket...she is having the time of her life!! There was a princess dress in the pile, and she even made Hayden try it on. I cannot thank Dell enough for this outpouring of support.

Also, the employees of the Hospital where I work in Yoakum took donations and went together to buy a visa gift card. I was going to use it for a special trip to the toy store with Riley, but I think I may instead use it next week when we are stuck in Houston for two days and find somewhere fun to go. Maybe the zoo if it warms up, or the Aquarium in downtown Houston. We will have to see how she feels after her port placement.

Thank you everyone for everything...you truly are making this process much easier. And I'm sure you can tell by reading or from the pictures, but I believe we may have a version of our old Riley back. She has been in a much better mood, and is even up and about playing with all her toys. It has been over a month since we have seen our princess playing, and it is a sight I don't want miss for anything. Our prayers have been answered!!! The eating is also getting to be under control. She still eats more than she used to, but we are through with the middle of the night snack attacks.

Please continue praying for Riley and the other children dealing with cancer. It was a good sight to see not too many patients while we were on the 9th floor this time...the last time we were there it was a full house.

Home Sweet Home

We were finally discharged at 5 pm today. We had our discharge instructions given to us at 2:30, and then had to sit around and wait for two and a half hours for the resident on call to come and tell us we could go...it's fun being on someone else's time. The doctor decided to consider Riley's bump an insect bite, and sent us home on some strong antibiotics. I'm not convinced it is an insect bite, but whatever. Her blood culture and nasal swab all came back negative, and because her blood counts were good we were able to come home. Riley still does have her cough, but they don't really like to medicate that unless it keeps her up at night...which it doesn't. Hopefully it will be better by Tuesday, or we may have to reschedule the port placement surgery.
Oh, and we still haven't heard any bone marrow results...but our nurse today told us we were in remission. He said if they had found something we would have had an army of doctor's in our room speaking in soft voices. Fortunately, this did not happen. So, at this point we will consider no news good news.

Back again...

So, here we sit once more at Texas Children's. But, this time it is a minor problem. Riley started running fever yesterday afternoon around 4, and rose pretty quickly to 101.6. I called the on-call doctor and they suggested we come to the ER. We had also been noticing a red area on Riley's arm that had progressively been getting bigger, so he thought this was the reason for the fever but urged us to come anyway. We got to the ER around 7:30, and by this time her fever had gone down some but the red area was still present. After blood tests and x-rays, it was determined that everything looked okay regarding the fever...but because of the "lesion" on her arm they wanted us to spend the night. One of the big fears with Leukemia patients is getting a fungal infection, and they wanted to make sure this was not fungal. She was started on some heavy antibiotics and finally at 1:30 this morning, we were escorted to our room on the 9th floor. You gotta love the ER...they never seem to be in a hurry.
This morning Riley woke up in a great mood. She is starting to get used to being pampered while she is in the hospital. The sore on her arm looks much better, but it is still a little red and swollen...and the doctor's have decided to treat it as if it were a staph infection versus a fungal infection. We are going to stay until at least tomorrow to watch the area and continue getting the antibiotics. Fortunately, the fever is gone completely and she feels great otherwise. There was talk amongst the doctors that we should just stay until Monday to have her port placed...out of convenience. I myself see nothing convenient about this, because why should you keep a healthy child in the hospital just for the sake of convenience? So, I am doing my best to persuade them otherwise...but in the end will do what is best for Riley, not myself.
Josh came up this morning after working last night. He "conveniently" left my computer and camera at home, thinking it would force me to talk to him instead of keeping my nose buried in my laptop. He then proceeded to fall asleep, so now he and Riley are both snoring away. Lucky for him the hospital has a library with the internet, so I was able to make a quick update. We are still planning on going home tomorrow, unless something major happens...but as soon as I know something more I will update. We have also still not heard any results from Wednesday's bone marrow, so I will keep hounding them for that as well.
Hope everyone had a good Thanksgiving, and we will be back in touch soon.

Day 30

It is hard to believe that we have been traveling through this journey for over a month now. At times it seems like it has been years, but then at times it seems that it has flown by. Of course most of that is dependent on the mood of our little angel. Thankfully we are finished with the steroids for now, and on average should take a couple of weeks to be completely out of her system. So we will deal with the mood swings for a little bit longer...as well as the middle of the night snacking. I think we can handle that.

Today's doctor vist went well again. We met with one of the nurse practitioners today, and she answered most of our questions. We have mainly been worried because Riley seems to have trouble walking and getting up from off the floor. I thought this was because her belly is a little larger that she is used to and may be throwing off her sense of balance. But, it is actually a side effect of the Vincristine, the chemo she has been receiving. It causes muscles to become weaker and also causes foot pain.

Riley's blood counts were all good again today. Her platelet and white blood cell counts are in the normal range...yea!! Her hemoglobin, or red blood cells, are taking the longest to normalize....they have been holding steady at 9.0. Which isn't bad, but it isn't as high as it could be. The only problem today was her blood glucose level was low, at 50. This was more than likely caused because she wasn't able to eat or drink all morning because of her procedure. So they gave her some iv fluids, and everything was fine. A plus side to today's visit was she did not have to have her normal dose of Vincristine, the chemo...so her little body is getting a much deserved break. We will start back next week, which will also be the first week of the next phase of her treatment, referred to as consolidation. This of course is also dependent upon the results of her bone marrow today, because you can't enter the consolidation phase unless you are in full remission. I hope to hear the preliminary results sometime soon.

Riley handled her procedure well today. She was scheduled for the bone marrow aspiration and lumbar puncture, or spinal tap, where they also "shoot" a small dose of chemo into ther spinal fluid as a precautionary. They were able to do the bone marrow with no problem, but when they tried to do the spinal tap they punctured a vein and were only receiving a blood tinged specimen. So, because of this she wasn't able to have the extra dose of chemo...causing us to have to make it up later down the road.

Next Tuesday Riley is scheduled to have her port placed in, and then we will stay in Houston to have her normal clinic visit on Wednesday. Wednesday will also be the first of a series of 3 lumbar punctures, but because we have one to make up she will have four in a row. They won't be doing the bone marrow aspirate again until further into treatment, so she will only be having the spinal tap with the extra dose of chemo.

Riley handled everything very well today. She is always scared going into it, because she is scared it will hurt when they put in her IV. But, once they are actually doing the IV she doesn't even flinch...can't explain that one. It's always a little hard when she can't eat or drink all morning for the procedures...I have to act like I am a bad mom and forgot to pack her snacks, when actually there is a bag full of them. She has also been having a pretty annoying cough lately, nothing too bad, so we are able to give her benedryl for this...also allowing her some much needed rest. Benedryl always seems to knock her out.

Wow! I know that was a lot of information for everyone to process, but it is actually all good things. So, even though it doesn't really seem like it sometimes we do have a lot to be thankfull for this Holiday Season. There are so many children going through what we are, but aren't as forturnate to have great results all the time...or the families that will be spending the holiday's in the hospital. Please continue praying for all the children battling these horrible diseases, especially through this season.

Happy Thanksgiving!!!

-Josh, Kari, Riley and Hayden

T minus 1

1 more day of steroids!!! Tomorrow cannot come fast enough!! I know it will not be an instant relief, but just knowing that the worst part will be over, for now, is all I need. The mood swings have actually been tolerable these last couple of days, but they are still present. She's always hungry but never knows what she wants to eat. Her latest obsession is tortillas. Not sure where that came from, but all she wants is a tortilla...easy enough. She woke me up at 4 this morning to go to the bathroom, and then wanted me to make scrambled eggs and toast...not gonna happen. So she sat in my bed eating tortillas while I went back to sleep. I'm such a sweet mom!!
So, Wednesday we go back to the doctor to have the bone marrow aspiration and spinal tap. I'm not sure when we will have the results back, hopefully they will call me that night like they did last time. But, as soon as I know I will let you all know. Thank you again for all the thoughts, prayers, comments...Everything!!! We love it!!

Happy Birthday, Hayden!!

Our little man is 1 today...and this has to have been the fastest year in history. We celebrated by having dinner at Nani and Papo's house (Josh's parents, Mary & Jerry). Hayden had a fantastic birthday!!

Riley had another great doctor's visit. Her blood counts were all okay. Not all as high as they would like them, but high enough to not need any transfusions. Our regular oncology doctor, Dr. Dreyer was back in town (she has been in India for a medical conference for the last couple of weeks) so we spent the visit talking about what she believes the future will hold for us. They think that we will be able to move down from standard risk to low risk, and be labeled as a Rapid early responder. This is all dependent on how her bone marrow looks next week, but because her last bone marrow was clear...she feels confident in this. She went through our future treatment plans, and as soon as I have a grasp on it...I will pass it on. The best news out of this all is there will be no more steroids for a couple of months, and when we do go back on them it will only be for 5 day stretches. Right now, the steroids are the root of all our evils. The girl is obsessed with eating, and has ballooned out a little. This is all normal, especially when eating so much salty foods. Right now Riley has fallen in love with toast and gravy. Even at 2 in the morning, she wants to get up and eat toast and gravy. Dr. Dreyer said this is also why she is so tired and grouchy all the time...6 days left and counting down.

So, right now everyting is being based upon how her bone marrow looks next week. So, please keep praying for a full remission...meaning no more Leukemia cells.

Happy Birthday, Daddy!!!

Today is Josh's birthday!! Riley is spending a few days at Nana's house getting pampered...so that left Hayden to help Daddy open his presents. He had a great time.

I went to Brenham yesterday to drop off Riley and pick up Hayden. Riley is doing about the same, she has her ups and downs. She had a good day today, though. I talked to my mom earlier, and they had gone to the park and went fishing. All kinds fo fun things. I am anxious to find out what the next phase of treatment will be. Hopefully the treatments will be spaced out more, so Riley will feel up to doing more of the things she loves to do...without being tired.

We also want to say Happy Veteran's Day, and thank you to all the veterans out there.

Have a great week!!

Our little man

I was going through pictures, and couldn't resist sharing these pictures of Hayden. How can you not fall in love with that smile, those big blue eyes...that red hair!! He has just grown up so much in the last month or so, and I feel like we have missed most of it because we are so focused on Riley all of the time. This can't be easy on Hayden, either. Always getting juggled from place to place while we are in Houston. But, I know he is enjoying himself anywhere he goes...and getting so rotten in the mean time. He is such a sweet boy, too. I can tell he misses the old Riley, they used to always play together. When she is laying in my lap, he will climb up there with us and just hug and love on her...melts my heart.

I think we all miss the old Riley. She was such a free spirited lively little girl, always on the go...and talking non stop. Every now and then we will see that side of Riley again, but just for a few minutes. And I know I can't blame her for just wanting to lay around and sleep, but I am just ready to have my spunky princess back. This is all just starting to wear on her. This morning she woke up crying and mad. Mad at the world, mad because she feels so bad...and mostly mad because she couldn't figure out what she was hungry for. I'm ashamed to tell you what she had for breakfast, macaroni and cheese. I know we are supposed to be working on a low salt diet, but sometimes you will do whatever it takes to help your baby stop crying. But it's only a matter of time until the old Riley is back for good.

Sorry for the sappy post...I think everything is just starting to sink in and take it's toll. But, I promise I am moving past it...and will only have happy positive thoughts from now on.

Oh, and I also want to take this time to say Thank you to everyone. Thanks for the thoughts, the prayers, the gifts. It is still so overwhelming to Josh and I the amount of support from everyone. People we don't even know are sending prayer grams and donations...from the bottom of my heart thank you. No one ever wants to be put in this situation, but it is because of all of you that we are going to be able to pull through this. Please keep the prayers and thoughts coming.

This picture was taken in September, before this all started, and it will always be one of my favorites.

Easy cheesy...

My apologies for the late posting. We decided to be lazy when we got home yesterday, and I didn't feel like picking up the computer. Riley and I actually argued for 5 minutes over who was going to get up and get the remote that was on the coffee table. She really was closer, but being the good mom that I am...I decided we would just let Cinderella replay for the 3rd time so neither of us would have to get up. Sweet aren't I?!

The doctor's visit went very well. Her blood counts were good, everything is starting to level out. Her platelet count was up from 7 last week, to 45. It's not as high as it could be, but it shows that she is starting to make her own again. The doctor said everything looks good, but took one look at Riley and said we need to lay off the salt. As you can tell from the picture above, she is getting a little puffy. The "moon"cheeks are a side effect of the steroids, but it doesn't help that all the girl wants to eat is carbs and junk food. What can I say, the girl loves her cheetos!!

So, after we saw the doctor the nurses gave her her chemo treatment, and we were out the door. We were back at home by 1:00, after stopping to eat at Luby's, of course. Our appointment next week will be the same as today...blood work and chemo treatment. Then the next week they will do another bone marrow aspiration and spinal tap. Just to make sure that the cells her bone marrow is making are the safe and happy cells, not those mean ol' Leukemia cells. This will also give the doctors more of an idea on how to start the next phase of treatment. So pray for the best with that.

Hayden has gone to spend a couple of days with Nana and Pops in Brenham...allowing us some much needed rest. That little man is always on the go, hard to believe he will be 1 next week.

Oh, and notice Riley's new sassy haircut. Sort of a proactive approach to the whole hair falling out issue. It hasn't really started to "fall" out, more of a thinning out or heavy shedding. It may not even fall all the way out, everyone is different. Either way, it will grow back.

Hanging out on the back porch...

This weekend the kids and I came to spend some time at my parent's house in Brenham. Josh went to go deer hunting for opening weekend, and we didn't want to be home alone. The weather has been so beautiful, we have spent most of the time enjoying it on the back porch.

It has been sort of an up and down weekend for Riley. These medicines are really tearing up her stomach, and she is just not feeling that grand. She had perked up a little this morning, but has been in and out since. She has taken a couple of naps, but nothing is helping. We have discovered that if you don't make eye contact, she is fine. The doctors say to still keep your limits with her acting up, but sometimes that just doesn't work. She only has about a week and a half left on her steroids, and things should start to settle down...we hope.

We are also discovering what a chore it is to find an exact temperature. We have been through 3 thermometers, all of which claim to be the best, and all 3 give different temperatures. Makes things a little difficult, when one of your major fears is fever. We took the average of all 3, and decided she was ok.

On an ending note, I want to give a "shout out" to my little sister Shelby. She got engaged last night!!!! Holla!!! What a cute little flower girl our princess will be!!!!

Happy Halloween!!

Our little ballerina had quite a full day today. We had our first doctor's visit, and despite a few set-backs it went rather well. Riley's platelet count was low again, so she needed to have a transfusion. The type she needed was not in house, so it was going to take some time to receive it. This wouldn't normally be a big deal, but Riley was not able to have anything to eat or drink because she was also scheduled to have her bone marrow aspiration and spinal tap. Thankfully she slept most of the day, but when she wasn't all she would talk about were the cookies she knew were waiting for her in my purse. Did I mention it is also Halloween, and EVERYBODY was handing out candy. What torture, having chocolate shoved in your face and not being able to eat it because your daughter isn't able to eat it. I did survive, however, in case you were worried.

Anyway, back to Riley. She did great with her procedure, and she was finally able to have her cookies. We stopped at Luby's on our way home, because by this time it was 4:00 and none of us had eaten. I think Riley ate more in this one meal, than she has eaten her whole life. We get to the table, and she starts screaming because the lady wouldn't give her the plate fast enough. She ate spaghetti, macaroni and cheese, fried okra, and some fish. Whatever the girl could get her hands on, she was shoveling it in her mouth. We had starved our poor baby.

We did however get to end our day with some good news. The doctor called me back as we were getting ready to go trick-or-treat (even though Riley could barely keep her eyes open she insisted on going), and said Riley had no Leukemia cells present in her bone marrow. We couldn't be happier!! We will still go every week to receive the chemo, and then in 3 weeks they will do another bone marrow aspiration and spinal tap. Hopefully nothing will have changed.

Hope everyone had a Happy Halloween!!!

The Bubster is home!!!

Our little Bub came home today, and we were all so excited to see him. I think he has grown 5 inches since the last time we saw him. Riley hasn't stopped hugging and kissing him since he walked in the door...and Hayden keeps following her everywhere she goes. Pretty darn cute.

Riley is doing well. She keeps complaining that her stomach hurts...not sure what that is from. Maybe from all the food she is eating, or it could be from the medicine. We will have to investigate that one. Tomorrow Riley and Hayden will both go back to the babysitter, try to get things back to as normal as possible. We go back to Houston on Wednesday for her next chemo treatment, and they will also do another bone marrow aspiration and spinal tap. It will be an all day affair, but hope to make home in time to go trick-or-treat...even though I'm a horrible mom and neither of my kids have a costume as of right now. Thank goodness for Wal-Mart!!!

Home Sweet Home

We were finally released from the hospital at 9:30 last night. We were scheduled to leave earlier, but had to have an unexpected dose of medicine. Her Uric Acid levels had gone up since her last blood test. This is caused from the Leukemia cells "busting" in her blood, and it can cause crystalization in her kidneys. We definitely don't want that. So, she had to have a pretty powerful medicine injected into her IV. The nurses kept a close eye on her during this, because it is so powerful she could have some major reactions. But, she handled it like a champ. So, they monitored her after this for a while. Then she had her next chemo shot, one in each leg, and again handled that like a pro. She continues to amaze me how tolerable she is being of all the shots and lab draws they are having to do. So, finally her last blood test showed her Uric Acid level had dropped from 8 to 0.6. We were finally free to go home. You couldn't get us out the door fast enough.
It felt fantastic to sleep in our own beds. We are still missing Hayden big time. He isn't home because he has been sick himself, and obviously can't be around Riley with her lowered immune system. We are thinking he should come home tonight or definitely tomorrow.
Riley and Daddy have gone off to fill the deer feeders. I think Riley had a major case of cabin fever. So, I am home alone and not quite sure what to do with myself. I'm sure I will find something to get into...

Friday, October 26th - Sitting and Waiting

Riley finally got unhooked from Oscar late yesterday afternoon. She celebrated by making a few rounds in the Flinstone's car. Good times!! We are still waiting on the latest lab results, but the doctor's are fairly certain she will need one more transfusion of platelets before we go. They say it will be late afternoon before we get discharged...just as long as it is today, I don't care what time. So, we sit and we wait. Right now Riley and daddy are taking a little snooze in the bed, and I think I am not far behind them.

Thursday, October 25th - She Eats!!

Who knew this is what it would take to get Riley to eat. We have been fighting with her for the past 2 years to make her eat. Now that she has been started on the steroids, that is all she wants to do.
There is nothing really going on today. We are just hanging out in the room, making many a lap through the halls. The plan is for us to go home tomorrow, after she gets another medicine. We are so ready to get home and back to almost normal. We are all missing Hayden big time, and are ready to play with our own toys at home.

Wednesday, October 24th - The day of walking

Today was not one of our good days. I think the nights of being awoken to be poked and prodded started to catch up with her. She slept until 11:30, and didn't feel like doing much of anything. She loves to walk the halls and go to the play room...but today she just wanted to be held and ride in the wagon. We made many a lap pulling Oscar and the wagon. A fairly uneventfull day. The steroids are also working their magic. She is craving something...but not sure how to tell us what it is. She just wants to stand in the family room, which includes the community kitchen, and hope that something will jump out at her. We are now off to hope that we can discover whatever it is that she is wanting.

Tuesday October 23rd - Day One they call it....

Tuesday was the best day so far. Riley woke up with the spunk that we all knew she had, but hadn't seen in a while. She still wouldn't use her left hand, they had put in another IV line while she was under anesthesia to use for the chemo treatments. She made friends, she danced in the halls...anything to get out of the room for a while. She also discovered her new favorite hobby...painting. We ended up with paint everywhere, but the girl was happy...so we were happy. She also received her first chemo treatment Tuesday afternoon. We had all expected this big long drawn out affair, but the whole thing took less than 2 minutes. Awesome. She handled it like a pro. I think it turned out to be more traumatic for us, than for her. One down, many more to go. One of the other medicines she will receive for treatments is a steroid and she will get this twice a day. Everyone had warned us about the mood swings she would have, and how it would make her very hungry. I had no idea how quickly this would all start to happen. I think she ended up eating 3 dinners this night. She had her hospital tray which was a sandwich and chicken noodle soup. Josh, Jen, and I decided to have Italian food for dinner, and Riley decided she would help us eat our dinner...making meal #2. After we ate we went to the play room to join in the festivities, and they were serving pizza...meal #3.

Monday October 22nd

Monday, October 22nd Happy Birthday Papo!! (Josh's dad, Jerry) Monday we were scheduled to have the bone marrow and lumbar puncture. We were told repeatedly that they would take us down around 9 am. 9 came and went, 10 came and went...we were still waiting. Riley did receive another unit of blood this morning, and fortunately for us that this unit contained angel blood...unlike the previous unit. Coincidentally this is also the time Riley decided that she was finally hungry, but we couldn't give her anything to eat before her procedure. It was interesting to come up with new ways to keep her mind off of food. Finally around noon we were escorted down for the procedure. They did put her to sleep for this procedure, and it was over in a flash. We came back to our room to sit and wait to get the results from the procedure. We had lots of visitors to help pass this time. So, we found out that Riley has Acute Lymphoid Leukemia...also referred to as A.L.L. Lucky for us this is the most treatable form of Leukemia, so the doctors gave us a great prognosis for the future. Dr. Dreyer explained that we would be treating this for the next 3 or so years, and we would take everything one month at a time. I can handle that. She also got another transfusion of platelets. After that her blood counts continued to stay at the levels the doctors liked seeing.

The back story...

So, as I sit trying to decide what all I want to say...I decided it would be best to start from the beginning.


Friday, October 19th

The kiddos headed to Brenham to spend the weekend with my parents, Nana & Pops. I had known going into this that something with Riley was just "not right". So, Nana (a lab technician) decided to take her in to see what was going on. At this point we were just thinking she was anemic. How I wish that were the answer.



Saturday, October 20th

We went back to the Brenham Clinic to have the labs redrawn, and compare them with the results from the day before. Most of her blood levls had become worse, so we were urged to bring her to Texas Children's to have the professionals take a look at everything. We spent most of this day in the ER, having lots more tests run. Our fantastic ER nurse Carrie was able to start Riley's IV in one stick, which is a feat in itself. For some reason this made Riley believe that she has lost all use of her hand, we had to keep it covered with a washcloth...out of site out of mind. They did begin her antibiotics and first dose of platelets at the same time, which turned out to be somewhat dramatic. The combination of everything made her blood pressure fall, her fever rise, and stomach start hurting. Everything all at once. It was determined later in the day that it was a very strong possibility that Riley had Leukemia. We would have to wait until Monday to have a bone marrow test and lumbar puncture to be 100% sure, and also find out what type she has. So, finally at midnight we were admitted to our new home-away-from-home, room 914 at Texas Children's Hospital.

Sunday, October 21st

Sunday, we began to see what an awesome family the 9th floor at Texas Children's would be for us. Most of the families recognized us as the new people, and were all welcoming and quick to offer words of encouragement. It is so cute to see all of the bald heads running around, and I think this may also be what "outed" us as the newbies...Riley still has a full head of hair. I decided that today was the day we should find a name for our IV pole friend, being that he would be part of our family while staying in room 914. We came up with several options, but it was soon apparent that our new friend would be named Oscar...for obvious reasons I will get into later. She received her first blood transfusion, because her hemoglobin was much lower than they wanted to see. We soon started referring to this unit of blood as "the devil blood". As soon as the transfusion was finished, you could tell that she was feeling much better...she was all over the place. This is also when we decided Oscar was the perfect name for the IV pole...it made our little angel just a tad bit grouchy.