Maintenance has begun

Riley was finally able to begin the Maintenance portion of her treatment yesterday! This is a monthly plan that we will keep repeating until the end. It will consist of once a month chemo, Vincristine, in her port...as well as a nightly chemo pill called 6MP. She will have 5 days of steroids every month, and once a week will take another chemo pill called Methotrexate. Once every three months she will have a spinal tap with intrathecal Methotrexate (meaning they put it into her spinal fluid). We will only have to go back to Clinic once a month for now...every two weeks in between she will have her blood counts done, but we can do that locally and have them sent to the clinic. We won't know what to do with ourselves!! Of course, this is all dependent on Riley staying well and healthy. Throwing a fever into the mix will change all of this.

Yesterday in clinic Riley had a spinal tap, which means a lot of sitting and waiting...but thankfully she slept through most of this. She always does so well, but always asks so many questions. It's fun to try to come up with something on the spot, because you don't want to tell her what is really going on. When she is hopped up on her happy anesthesia medicines, she's out of it but still knows something is going on. You can't really tell a 3 year old that they are sticking a giant needle into your back to collect some spinal fluid, and then inject some chemotherapy. So you have to be creative...and Dr. Dreyer and the nurses won't help. They just look at you with a grin, waiting to see what you come up with. All part of the fun, I suppose!!

Riley's blood counts were all good. Her ANC was 930, still on the low side but higher than it has been. Her platelets were 256, and her hemoglobin was 12...both in the normal range for once. We will check her blood counts again locally in 2 weeks, and then go back to Houston on June 25th for a make-up spinal tap and her monthly dose of Vincristine. We will definitely be out of our element, not going to Houston every week. But, somehow, I think we will survive!!

Please continue to pray for Riley....we want her to stay healthy and fever free. She is enjoying her summer, and swimming every chance she can get. She has got quite the tan going on, already. This weekend we all went swimming at Nani and Papo's house, and then Monday night Riley got to swim with Paige at the RV park where they are staying in Houston. Riley loved that, she is in love with Paige and her family. Those two girls may not know it yet, but they have a very strong bond that will stick with them forever. It was so precious to see the 2 baldies...I may be a little partial to little bald heads, but Paige looks absolutely stunning without her hair. There are pictures below of them together. One of Paige's friends said it best on her website. She said God knew what he was doing when he created these girls, because he made them so beautiful with and without hair. Paige is set to come home this weekend, because she graduates Friday night. Please pray that she stays fever free so she can walk across the stage. Congrats Paige...we are proud of you!!!

Weekend picture post

Below is a prime example of Riley and Hayden's love/hate relationship. One second I find myself thinking - They like each other...they really, really like each other. Then, literally, in the blink of an eye...it's gone. Cracks me up!!

Another week off

Notice the fuzzy head! Riley is beyond ecstatic that her hair is starting to come back. It has really started to bother her lately, that she doesn't have hair. She keeps seeing all the little girls with pig-tails and she so wishes she could have some again. Now, it won't be long!! I can't really tell what color it will be...in some light it looks dark, but then it will look light other times.

Riley had another dry run yesterday in clinic. She was scheduled for a spinal tap and chemo, but she didn't make the cut. Her ANC needed to be 750 to begin, but it was only 720...SO CLOSE!! The doctors discussed it and decided it was best to wait, so Riley was granted another week off from medicines....we will return to clinic on Tuesday for another try. Riley's other blood counts were good, Platelets were 154 (in the normal range for once) and her hemoglobin was 9.6 (still low, but definitely on it's way back up).

To celebrate our unexpected day off, we took Riley to Build a Bear and she had a blast...she wanted to make more. Her new bunny friend's name is Tosca...this is also Aunt Shelby's dogs name whom Riley is in love with.

We have also wanted to document more of what we experience at our clinic appointments, because I know that I would be curious to know if I weren't the one going through it. Here are a couple of pictures for now, and I will add more as time goes by.

These are the dancing cows that greet you upon entering the building, where you wait for the elevators. They have silly names, but I can't remeber what they are.

14th floor, home of Riley's cancer clinic.

This the cow that greets you once you step off the elevators onto the 14th floor.

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The roadies have returned

Wow, what a weekend!! Riley had a blast at Schlitterbahn, she was even brave enough to go down some of the bigger kiddie slides. We stayed at the resort inside Schlitterbahn, you literally walked out the front door and you were inside the park. Too cool. When we got there Friday night, the pools outside our rooms stayed open late so Riley was able to play and swim without too much of a crowd. It was almost 11 o'clock before we got her inside and ready for bed, and then she informed us that she was going to hurry and go to sleep so she could dream about swimming some more the next day. What can I say, the girl LOVES water!!

Arlington was fun, too. Although we somehow got suckered into helping Shelby finish packing up her apartment and loading everything into the U-haul. This task must have been inadvertently left off the agenda beforehand...she is lucky she is so loved. We hardly even complained, okay maybe just a little. Riley had fun entertaining the dogs with stories and songs, she even read to them out of a cookbook...definitely didn't get that from her mother!! The best part of the weekend was just hanging out with the fam in the hotel room, we all squeezed into one suite...poor Josh got stuck on the floor, good thing he's a trooper. Shelby and Justin are officially UTA graduates...and we wouldn't have missed it for the world!!!

Yesterday was Riley's clinic appointment to check her blood counts. Everything looked okay, except her hemoglobin, or red blood cell count, was way low. They did another lab test called a retic count, to break it down and see if she was producing new little baby red blood cells...and she was, so she was able to escape without a transfusion. Meaning, we caught it on it's way back up after bottoming out. Again, just another expected side-effect from the Ara-C. Things should be starting to level out now, hopefully. I never did get her ANC from yesterday. It wasn't back with her other blood counts, and we didn't feel like sticking around to find it out. We were able to make a quick trip to MD Anderson to check on Paige and her family. Riley wasn't able to go back into the Leukemia "ward", so we visited in the hallway. Paige was doing well, but starting to feel some of the affects from the chemo. She is such a brave girl, and handling everything like a champ. They estimate her treatments will last for the next 6 to 8 months, meaning they are going to hit her pretty hard in the meantime. She will be admitted once a month for continuous chemo lasting 4 to 6 days...it's going to be a tough road, but at least it's a short one. Please continue to keep her in your prayers...along with our Riley-bee, of course.

This will be Riley's last week without medicine. Next Monday begins Maintenance...Riley will return to clinic for a spinal tap and Vincristine in her port, as well as begin the 5-day punch of steroids. Oh, joy!!

Here are some pics from the weekend - minus Schlitterbahn, Josh and I made a deal for no bathing suit pics so I didn't even break out the camera.

Riley, Nana, Pops, Shelby & Justin with the U-haul

The U-haul seesters - Nenni, yours truly, & the Shelbster

The graduates, Shelby & Justin

Our future graduate!!

Riley and Paige, the Leukemia gals

Riley and Hayden watering the garden - aren't they so cute!!

Gearing up for a busy weekend

We are going to have a marathon road trip this weekend, and we wouldn't trade it for anything. We are leaving tonight for New Braunfels, Sunshine Kids is sponsoring a weekend full of fun at Schlitterbahn. Riley is so excited, the girl LOVES water...so this will be right up her alley. Then Sunday we will head to Arlington to watch Shelby graduate from college, hard to believe my baby sister is all grown up...it actually makes me feel kind of old. Shelby's fiance, Justin, will graduate Saturday. Way to go Shelb and Justin...we are so proud of you!! Sunday night we will then head to Houston for Riley's clinic appointment Monday. Hayden is going to stay in Hallettsville with Nani and Papo for the weekend, there is no way I am running after that wild man all weekend...he is full throttle non-stop. Josh and I will have a lot of make-up trips to take Hayden on when he gets a little older, poor guy gets left out of everything.

We also wanted to wish all of you a Happy Mother's Day. We definitely would not be where we are without my Mom and Mary. They have been our life savers, and our rocks. We love you both, and there is no way we will ever be able to say thank you enough.

Have a great weekend, everyone!! Take a few naps for us!!

Paige's website

For all of you interested in keeping up with Paige, here is her website info - www.caringbridge.org/visit/paigehaas . Please drop them a line to let them know you are thinking of them. Encouraging words always help brighten spirits, as well as pass the time inside the hospital walls.

What do you think of the new blog page?!

Thank you Nenni for helping with the new design...we love it!!!
Riley had an appointment to check her blood counts today, and turned out that she needed some platelets. Her ANC was a whopping 60, her hemoglobin was 10.1, and her platelets were 32. Very low counts, but it is an expected delayed reaction from the last two weeks of Ara-C. The good news is Riley will get 2 weeks off from medicines, before we start Maintenance. Maintenance will consist of 2 visits to clinic per month. One to give a once monthly dose of Vincristine, her main chemo through her port, and the other is to check lab counts. She will take a pill, 6MP, nightly...as well as have a spinal tap every three months. This will go one for the remainder of treatment time, roughly a year and a half or so. Hopefully that will fly by.

Our friend Paige found out today that she has Acute Myelocytic Leukemia. They don't know what strain of AML she has, and this is what will determine the type of treatment she will get and how long it will last. Please keep them in your prayers as they continue to find out the path that lay ahead of them. Josh and I have talked with them a couple of times in the last few days, and they seem to all be doing as well as expected.

New footage of Princess Riley

Click on the arrow above to see the new video.

Prayers needed

All of your prayers have worked so great for Riley, we want to ask that you please add our friend Paige Haas to your prayer lists. Paige is a beautiful 18 year old young lady, who found out yesterday that she has Leukemia. She does not yet know what type, she will have a bone marrow aspiration Monday morning at MD Anderson to help find out more of the specifics. Paige's parents, Robbie and Holly, have been such great friends to us and helped out with Riley in every way possible. Josh and I know all too well the initial shock they are feeling, after having to let the fact that your baby girl has cancer sink in. They are very strong people, so we know they will all overcome this. Your prayers will help this happen.

All juiced up

Riley did receive blood and platelets yesterday, even though she truly didn't need them. Her blood counts yesterday did not drop as much as expected, but because of our not-always-so-good luck we decided to proceed with the transfusion...otherwise we would probably be back over the weekend needing blood. Her platelet count yesterday was 46, and her hemoglobin was 8.6, right around where she was Monday. It was a long day of infusions, but Riley did great. She has all those nurses wrapped around her finger, as well as Dr. Dreyer her oncologist. There was a group of ladies that Dr. Dreyer was showing around the infusion room of the clinic (this is basically just one big play room) and she made a point to show off "her Riley". That is one loved princess!! So, Riley will continue to think cold thoughts throughout the weekend, and we will return to clinic Monday to check on her blood counts. Tonight is her last dose of the Ara-C, and then she gets a two week break before starting Maintenance...yahoo!!!