Riley keeps us on our toes

We got to enjoy another fun ER all-nighter, Sunday night. Riley took a late nap Sunday afternoon, and when she woke up her temp was 101.7. By the time we talked to all the necessary doctors and got all packed up, it was 8:00 before we got on the road to Houston. We finally got into an ER room around 10:45, but didn't see a nurse until almost 11:30. They checked Riley's blood counts, and her ANC was 500...which is just barely over the cut off mark for having to be admitted. So, she was given 2 different IV antibiotics and at 3:30 am we were discharged. Fortunately, Riley's appointment for yesterday's check-up was not until 1, so we were able to get a hotel room and sleep for a couple of hours.

Yesterday Riley's blood counts had dropped even lower in less than 12 hours, which is expected with this round of medicines. The medicine she is taking now, Ara-C, is known for bottoming out blood counts and also for causing fever...two things that are not our friends right now. Riley's ANC yesterday afternoon had dropped down to 320...her platelet count is 41 and her hemoglobin is 8.9. We are taking Riley back to Houston tomorrow for platelet and possible blood transfusions...since we are continuing to give the Ara-C until Thursday, they are expecting her counts to drop even more. And we were also instructed that any more fever, means automatic admission to the hospital. So, Riley has once again been instructed to think cold thoughts...but our bags will stay packed just in case.

Other than that, things have been going great. Riley feels good, and is even more sassier than before...if that is possible. She and I have had fun playing nurse as we give her Ara-C through her port...she enjoys helping me and is quick to tell me if I am not doing it right. We also enjoyed our last Relay For Life stop this year, Friday night in Brenham. Mom and I took Riley and Hayden, and we were joined for our victory lap by my grandparents...very fitting, I believe, as they are always helping out with Riley and Hayden both. I saw lots of old friends I haven't seen in a while, and Riley was treated like the princess she is known to be. Thank you everyone for loving my kids like you do!!!!

I will continue to keep you updated on Riley's blood counts, and hopefully the next time you hear from me won't be from inside Hotel TCH. We have lots of fun festivities scheduled for the next few weekends, and we don't want to miss any of them.


Riley helping me flush her port, before giving the Ara-C.



Riley and the Tarlton Tribe at Friday nights Relay For Life...Riley was the Tribe Princess.




Our little Princess



Hayden enjoyed Riley's princess cap, and stole the Tribe's lizard...oops!!


This shows what a mother hen Riley is. Braylee is 1 and just starting to walk, so she and Riley made many a lap for her to practice.


Riley and Brayze driving the cars at Fiddler's Frolics. This is a big BBQ cook-off in Hallettsville, complete with carnival and all...oh, and the state fiddling tournament, hence the name.

Rest...who needs it?

Riley is well on her way to the down hill side of treatment, and has been feeling great in the process. She still has her grouchy moments, but I think she deserves them. Its also possible these moments are side effects from all the running we have been doing...nothing is keeping us down. Sunday afternoon Riley, Josh and I left early for Houston to attend a Texas Children's event at the Houston Zoo. Riley had a great time, she got to see most of the animals...she was most excited to see the giraffes. I think I was too...those are some odd looking creatures if you really study them. She was also super excited to stay in the hotel Sunday night. Usually if Nana or Nani go with us, we will get 2 double beds. Well, this time with daddy we splurged for the "one big bed" as Riley kept calling it. We have a king size bed at home that the 3 of us share nightly, but for some reason the "one big bed" in the hotel is even better. Whatever makes the girl happy.

Yesterday Riley's counts were all high enough for her to begin the last portion of Delayed Intensification...our last step before Maintenance. The day started off waiting for the spinal tap, which went perfectly. She still continues to crack us up while she is in the "goofy" state, she is still quite aware of what is going on...but a little slow on the uptake. For the rest of the day she continued to quiz us as to why she has a band-aid on her back. She doesn't remember the actual procedure, but she knows "something" happened. Following the spinal tap, Riley was given a 1 time dose of a new medicine, Cytoxin ( sounds like a name of a type of rat poison or something) through her port. Before giving this they had to test her urine to make sure it was diluted enough from fluids, as well as giving her 4 hours worth of fluids after she received the medicine. Riley also got her first IV dose of another new medicine Ara-C. Riley will have to keep her port accessed through Thursday, so Josh and I can give her this same medicine today through Thursday...and then we will be de-accessing her port on Thursday evening. (I knew I should have gone to nursing school!!) Then next week will be the same...go to clinic on Monday to be accessed, check counts, and receive her Monday dose of Ara-C. Then go home accessed for us to give her the remaining 3 doses, and de-access on Thursday. Riley was not excited about having to leave her "butterfly" in when we left clinic...she makes sure everywhere we go that I tell whomever we happen upon, that she did not want to leave her butterfly in but she "let them" do it anyway. Such a brave girl!!

We followed up our clinic visit by going to Minute Maid Park to watch the Astros play. Nana and Pops met us up there with Hayden, and everyone had a great time. Sunshine Kids (this is a children's cancer group that we signed Riley up with, they are always planning fun activities for the kids but we have never been able to make any of them) provided us with the tickets. Nana and I didn't get to watch much of the game because the kiddos did not feel like sitting still for very long...but we still had a great time.

This Friday night Riley will be attending Brenham's Relay For Life, the last stop on our Relay tour this year...I'm hoping. So, any of you Brenhamites that will be there...look for our Purple-shirt Princess. Tarlton Supply (the place I worked for in Brenham since I was 14 years old, before getting married and moving) (this also happens to be the place where my wonderful husband and I met and fell in love) has a team and we will be joining on with them. Thanks guys!!

Riley and Daddy on the carousel at the Zoo

Playing Lite-Brite while she waited for her spinal tap

My lively crew, while waiting for Riley's hydration fluids to finish

Riley and Nana, cheering on the Astros

Pair of Uncomfortable Shoes

I found this poem on another person's caring bridge website, and wanted to share. A recap of our busy weekend will be coming shortly...work is keeping me busy ( I know, how rude of them).

'I am wearing a pair of shoes. They are ugly shoes. Uncomfortable shoes. I hate my shoes. Each day I wear them, and each day I wish I had another pair. Some days my shoes hurt so bad that I do not think I can take another step. Yet, I continue to wear them.

'I get funny looks wearing these shoes. I can tell in others eyes that they are glad they are my shoes and not theirs. They never talk about my shoes.

'To learn how awful my shoes are might make them uncomfortable. To truly understand these shoes you must walk in them. But, once you put them on, you can never take them off.

'I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt.

'No woman deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am.

'I am a woman who has a child with cancer. I will forever walk in these shoes.'

- Author unknown

Hollywood goes grocery shopping

Here is a slideshow from Sunday's drive-thru

We had a fun-filled weekend!!

Riley-bee has been feeling better and better, and it's a good thing because we had an action packed weekend. We started out Friday night at Yoakum's Relay For Life, and Riley definitely had more fun at this one. Naturally I forgot my camera, but she enjoyed doing the Survivor's Lap in the wagon...it was too cute. Our team's theme was based around Pirates of the Caribbean, and they handed out skull bandannas for everyone to wear. Riley wore mine as a do-rag, and looked adorable. After the relay we went to a cousins 1st birthday party, where Riley enjoyed showing off her walking skills. She is getting around much better, but still needs to hold on while walking. Although, yesterday she got brave and walked a few steps on her own. It's kind of like having a new baby, all over again. This morning we were so proud that she slept all night (that hasn't happened since we came home from the hospital a few weeks ago), and then imagine our joy when she let go to walk all by herself for the first time in a month...a whole new batch of milestones for our princess.

Sunday was Riley's Hallettsville drive-thru benefit, and we are still in awe at the amount of support we received. There were so many people that showed up to volunteer, not to mention the men that stayed up all night cooking the chickens. We could not have survived this without each and every one of you. Everything went so smooth, and the food was delicious. Riley had a blast, although I'm not sure she understood that all of that was for her. We have some great pictures if I ever get around to finishing the on-line photo album...I still owe pictures from the Brenham drive-thru as well.

Yesterday Riley was scheduled for a spinal tap to begin the next new phase of treatment...turns out her counts were too low to be able to do the procedure. So, she gets another week off. Her counts weren't too low to worry, just too low to be able to do anything she was scheduled for. Her ANC was 337, but needed to be at least 750. Her platelets are holding strong at 65, but needed to be over 75. So, we will hold our breath that next week will begin the last phase before starting maintenance...things don't need to be drug out anymore than they already are!!! In the meantime we will continue to work on Riley's walking, and enjoying this beautiful weather.

Thank you again, everyone, for the outpouring of love and support for Riley. We would not be where we are without you. Your prayers and encouraging words help to make things bearable. We love you all!!!

We knew Popo was watching over everything (Josh's grandpa passed away July 4th from cancer), when we found this potato with a perfect cross inside. He is definitely watching over our princess!!! Riley informed me that when Popo is feeling better he will come home from heaven, because everyone misses him so much. If only that were true!!

We have a new member in our family

Riley has a new pet bunny, Piglet...don't ask. I tried to get her to name him/her Cinderella or Tinkerbell, but she insisted we should call it pig, cow, or even horsie...so we settled with piglet.