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!!!!