Happy Birthday Pops!!

Happy Birthday, Dad/Pops! Thank you for all you do!!! We love you!!

Keepin' on...

Riley has survived another tortuous clinic visit. We had planned on a quick trip in because we were scheduled for blood counts only. My first clue that our day wouldn't go as planned was when we checked in at the front desk.I was informed that Riley was down for a finger stick and was handed the buzzer (the same kind you receive at many restaurants when they have long waits) to let you know when it was your turn. Riley also knows what this buzzer means, and was not very happy. It makes sense now, because they don't want to access her port only for a lab draw. So, after a very traumatic finger stick we go and wait to find out her lab results. Fortunately they were all in the okay range, so we are able to finally be back up to the full dosage on all her home chemo pills. So, Riley and I accept the great news and are on our way out to grab a bite to eat...not so fast. The nurse discovered that somehow one of Riley's scheduled PEG injections had been overlooked and it would need to be done before we left. So much for our quick visit. Riley and I went down to eat and came back up for our fun afternoon ahead of us. After waiting the 30 minutes for the numbing cream to take affect, she was given the shot in both legs and we then had to sit and wait for 2 hours to make sure she wouldn't have a reaction. Luckily, Riley slept for most of that time and then she was up and playing. I am still so amazed at how brave our little princess is. She obviously knew what was coming once they put the cream on both legs, but she never complained. Once it was time for the shots she cried a little, but once it was over that was it. I think I cried more than she did...what I wouldn't give for only an ounce of her strength!!
We have another week off from clinic ahead of us...hopefully it will be as uneventful as the last one. Riley is scheduled for her physical therapy evaluation next Tuesday, the 4th...that is also the day we get to go see the proofs from last weeks photo shoot. I can't wait!! They are going to be so good. Riley was hamming it up for the camera, but Hayden was trying to be mr. shyguy...it didn't help that he wasn't feeling 100%. Either way I know they got a lot of great shots.
Please continue to pray for Riley and all the other "cancer cuties". Please also add in your prayers a wonderful lady I have met through our journey, Kerri Schaefer. Her son Malachi fought and lost a courageous battle with AML, a different form of Leukemia. Kerri has recently discovered she has thyroid cancer, and although they are still waiting for the pathology reports to see how "bad" the cancer is she has accepted her fate and is handling it like a champ. Such a strong christian lady, they are always keeping up with Riley's progress and still do so much for Texas Children's. Kerri, keep up the good work and thank you for all you do!!!

So far...so good

I hope I don't jinx myself by saying this, but so far we have survived our week off from clinic. Riley and Hayden have both been started on Tamiflu after being exposed to the flu, but we remain flu-free. Other than that, not much has been going on. Riley has been feeling terrific...she talks non-stop and has actually been waking up in a good mood. That is a treat in itself. Last week we had another 5-day round on steroids, finishing up on Saturday morning. We did get treated to some fun mood swings from our princess, but she had no crazy food cravings or never got up in the middle of the night to eat...nothing to it.

So, we will continue to enjoy our week off. Friday we are taking the kids to Sugar Land to have some professional pictures taken, can't wait to see those. We just want to have some good quality pictures of Riley with her bald head to keep forever. We found this photographer, Christine Meeker, through Texas Children's. She occasionally will go up there and treat the in-patients to a complimentary photo shoot right there at the hospital. Once the proofs from Friday are online, I will get you the information.

Monday we have an appointment at TCH only to check blood counts, and are off again until March 10th when we will begin the next phase of treatment. As I've said before, we are not looking forward to this phase because it contains so many high powered medicines...but once we are finished with this phase we can begin the maintenance portions. A light at the end of the tunnel...we hope.

Happy Valentine's Day!!

Riley continues to amaze us!!

Riley is such a trooper. She did so great yesterday. She was scheduled for another spinal tap, which was done in the clinic. They stick you in this room when you get there at 8am, and then at noon they finally start the procedure...makes for a long morning. Riley slept for some of the morning, and then she was up doing crafts and playing with play-dough. She only complained once that she was hungry, I think she is getting used to the routine. She did fantastic during the procedure, everyone was bragging on how good she does with everything. Once she was finished they brought her some crackers and juice and naturally she insisted upon feeding herself. The only problem was that she was still a little loopy from the medicines they gave her, so she was having trouble getting the cracker anywhere near her mouth...it was very humerous. Riley was then given her chemo treatment of Vincristine in her port, and we were on our way home. I actually think they may have slipped a little something extra in as well, the girl was wired the rest of they day.

Because Riley's blood counts were all in the perfect range, Dr. Dreyer upped the dosage on all her home meds. We are still working our way up from her "chemo break" when her counts continued to stay too low. Riley also started a 5-day round of steroids, that is always fun...but I will take 5 days over 21 day anytime. We do get next week off from clinic, so our bags are packed and in the car...since we always seem to make an ER trip during our week off. We go back on the 25th for blood counts, and then we have another week off before starting the dreaded next phase of treatment. We are just so ready for this part to be over with!!!!

Yesterday was also the Brenham drive-thru benefit for Riley, and we were blown away (literally and figuratively). There were so many people that volunteered their time to help make things go smoothly, we are forever gratefull to everyone. It was a huge success...and quite awesome to see so many people wait in line to get their dinner which in turn supports our little princess. It was also great to get to see so many people that I haven't seen in a very long time, even if it was a quick visit so we wouldn't hold up the line. Riley had a blast, she couldn't decide which task she liked more...selling cookies in the drive-thru line or putting pickles on the bbq sandwiches. I have some great pictures to share very soon. I am working on an online photo album which I should have up and running this week, so be looking for that link. Thank you everyone for yesterday. It was a little hard at first accepting that all of this was done for your daughter because she has cancer...but then you look at all the love and support that goes into putting one of these together and you forget about everything else. THANK YOU!!!!!!

The no clinic curse...

Saturday night we got to visit the ER for fever, once again. Riley spiked a fever of 101 around 10 o'clock Saturday night, so off we went to Houston. By the time we got everything together and figured out a plan, it was 1:30 in the morning before we got to the ER. It took another 45 minutes to actually get into a room, so naturally by this time Riley's fever had gone down. They took blood to check on her counts, and per protocol started Riley on an IV antibiotic. Her blood counts came back good, and after the ER doctor talked with the on-call Hematology/Oncology doctor it was decided to give Riley another stronger IV antibiotic and send us on our way. The first antibiotic finished around 3:45 and in the mean time they discovered that Riley's blood sugar had dropped to 44...so we had to wake her up to drink some apple juice and then do a finger stick, it was back up to 99. So, we're thinking they are going to come start up the second antibiotic, let it run for 30 minutes and off we go to get some sleep. Well, they failed to inform us that they can't start the second one until 6 hours after the first one completed. That would have been good to know an hour ago...so finally around 6am we settled in to get what little sleep you can get in this tiny ER room with this tiny ER stretcher and 2 very tiny uncomfortable chairs. God bless Nana, she lucked out with the 2 tiny chairs. She claims she got some sleep, but I'm not believing it. Finally around 10 they came to start the 2nd antibiotic and we were out the door by 11.

One of our discharge instructions was to schedule a follow-up with our regular oncology doctor for Monday morning, and I had rescheduled Riley's Echo appointment for Monday as well...so we decided it would be best for Riley and I to stay in Houston. Riley had a blast, she loves staying in the hotel. So, it was a nice ending to a crazy weekend.

Riley's echo went okay. She wasn't sure what to think of the whole thing, so she would cry and then she was fine. Then she would cry some more, and then she was fine again. They tech tried to bribe her with lollipops and stickers, it worked for a little while until she remebered what was going on. I haven't heard any results, so once again I am going with the theory that no news is good news.

Other than our crazy weekend, things have been going okay. Riley started back up on her nightly chemo pills, and you can tell the difference. She doesn't really eat, and complains about her stomach hurting. The same story as before...nobody knows why. This is what our life will be like for the next couple of years...but we're not complaining!!