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.