Riley and Tinkerbelle

Riley and Tinkerbelle
The Amazing Duo

Friday, November 5, 2010

The latest and greatest

I realize it has been awhile since our last update so here goes. As you all know, Rileys' last MRI was clear. We have been busy watching Riley grow and play like a "normal" kid. She has been growing like a weed and has put on a few more pounds. Her last weigh in she was 26.5 pounds. Her vocabulary has expanded as well. Sometimes I wonder if she has been reading the dictionary while she sits on the potty. Speaking of potty. Riley is hot and cold when it comes time to go. She likes to get completely undressed and sit for awhile Sometimes she asks for a magazine to help pass the time. We will get her over this little hurdle and should be routinely using the potty in no time.

Riley has been to a "little jumper" class where she was able to interact with children her own age. I was able to go with her to her first class where she was very timid and shy. Jen told me that her last class was Friday before Halloween and she slowly came out of her shell. Riley dressed as a turtle and was scared by a dad who dressed in a very realistic Batman costume. (As if Batman is real) Riley was afraid at first but by the end of the class she was ready to be Robin.

Halloween was a wonderful day. In the morning we went to Cardon's to deliver Halloween blankets to the kiddos on the 7th floor. Riley was dressed in her costume and went knocking on the doors. Riley really enjoys giving to others. Riley was also able to visit with some of her favorite nurses. Most of all, she gave Jen, Grandma Lee Lee and I a big smile. It was a great feeling watching her give not only the blankets but smiles. I am so proud of our little fighter. Afterwards, we went to the great grandparents for her to get some Trick or Treat practice. In the evening we loaded up the wagon and went to cousin Luckys' for dinner and a group "Trick or Treat" with some of her cousins. We made the rounds and returned home to pass out candy. Riley did great and didn't want to change out of her turtle costume.

As most are aware, we celebrated Jen's birthday on the 30th. This day also marks the 1 year anniversary of Riley's diagnosis. This was and will continue to be challenging day for years to come. We cherish each and every day with Riley and look forward to a lifetime of anniversaries.

On November 20th we are going to have the drawing for the prizes at Skippy's. We will be there in the evening where Riley will pick the lucky winners. Hope to see you there.

We know that Riley is our child but she is everyones kid. We enjoy sharing our stories and photos with each of you. Thank you all for reading and being a part of our fight.  

Wednesday, September 29, 2010

And Riley uses the potty....

Last night Riley was very interested in her potty chair. I had it packed to take to the Grandparent's house but she unpacked, put it back together and in the bathroom. By the time I figured out what she was doing she had her diaper off. She sat down and then the most wonderful sound could be heard...she was very proud of herself. I asked her if she was done and she said "No mama, I try more." It truly was a wonderful moment. It brought a tear to my eye. She is growing up so fast. The last several months have been amazing. You would never know that she had gone through what she has except for the bald head. She is making amazing strides everyday and we are truly grateful that Riley's tumor was discovered when it was. We know several families that are not having such luck and we as you to keep them in your prayers. The powers that be have a strange way of doing things but it will all work out in the end.

Tuesday, September 21, 2010

Another wonderful weekend

Riley is doing great. She had an appointment with Dr. McBride and she is happy with Riley's progress. Riley continues to act like a two year old which is pretty interesting to say the least. One minute she is happy the next she is mad  but then she goes right back to being happy. I just don't get it but oh well, it's just a stage right? This weekend we have so much to do and hopefully enough time to do it. Riley has her first tumbling class on Friday. We have the Children's Cancer Network conference to attend on Saturday and then on Sunday is the Hope Walk for Hope Kids. Whewww....I am already tired. It is well worth it to do everything that we are now doing. Who knew that having Riley's diagnosis would turn out to be a way to make new friends and doing exciting new things? This whole blog is a work in progress. I am still working on adding it to our site. It will be a link back to this site but there will be a blog for events for Gifts From Riley.

Sunday, September 19, 2010

The Last Year

  • SUNDAY, SEPTEMBER 12, 2010 6:56 PM, MST
    For those who don't already know...Riley's latest MRI showed NO EVIDENCE OF DISEASE! Needless to say we are elated and have been celebrating. Riley has a new friend....a puppy named Tinkerbelle. We are still working on the roughness that Riley is showing her but all in all it is going well. Well I am going to keep this short since Ryan is flying out in a few hours. 
    Thanks for reading,

  • THURSDAY, SEPTEMBER 9, 2010 8:23 AM, MST
    As we all have been waiting for Rileys next MRI appointment to be scheduled. Wait no longer! As I type this Jen is manuvering Riley and I through traffic at slow speed. Yep, we just got passed by an old man in a walker! Anyway, we received a call from the Dr's office informing us that someone had canceled their appointment for today. Without delay we took it and we are on our way. We will keep all apprised when we know something. Woo hoo, traffic just opened up and our pilot has now broken the sound barrier. Well, that was short lived. I think the tiles on the belly need to cool down! Back to stop and go. Rileys appotinment is at 1015 so we have enough time. If there is a gramatical error is because Riley is commanding "engage" and I am in an involuntary game of weightless! For those of you have missed my humor and or stories, I hope I put a smile on your face. 
  • WEDNESDAY, SEPTEMBER 1, 2010 12:38 PM, MST
    Today is the first day of Childhood Cancer Awareness month. 
    This poem was posted by Claire Devin's mom and I couldn't resist reposting it:
    "Children with cancer are like candles in the wind who accept the possibility that they are in danger of being extinguished by a gust of wind from nowhere, and yet, as they flicker and dance to remain alive, their brillance challenges the darkness and dazzles those of us who watch their light."

    Riley is doing amazing. It has been wonderful not having to go to the doctor's office everyday. She will see Dr. Graham on Friday to check her counts. We are still not sure when her next MRI is but it should be coming up in the next couple of weeks. Riley continues to amaze me by things that she says and remembers. She has learned most of her colors and now actually will tell you the right color when asked instead of whatever color she has picked for the week. Usually when you would ask her what color the ball was (say it was green) she would say "yellow" or "purple". Basically she would get stuck on a color and everything was that color. Now things are starting to click for her. We are still working on the potty training thing. She has gotten to the point that she will tell me she needs her diaper changed but when I ask her if she wants to stop wearing diapers and wear her "big girl panties" she says "No, diaper". At least she knows what she wants.
    I haven't reached our goal yet for our upcoming walk. Please tell anyone and everyone who might want to give or join us. Ryan and I have also been discussing having another fundraiser for Gifts From Riley. We will be holding the drawing for our raffle sometime soon and may have a benefit at the same time. We will keep you posted for those who are local. Our website is now up and running. Please visit and let us know what you think. I am still adding and changing things. 

    Thanks for reading,

  • SATURDAY, AUGUST 21, 2010 6:54 PM, MST
    Well things have been pretty normal around here. We are doing normal toddler activities. Yesterday we went shopping and played at the mall playground. I think Riley likes to watch the other kids instead of actually playing. Today we went to the AZ Natural History Museum with Riley's friend Ryler. She had a great time. It was wonderful to see Riley doing normal activities. No appointments for the next couple of weeks. Not much else to report other than a happy little girl.
    Thanks for reading.

  • SUNDAY, AUGUST 15, 2010 9:19 AM, MST
    Well Riley has been enjoying spending time with her Daddy and grandparents while I am at work. Someone has to do it. We will visit Dr. McBride and Dr. Graham in about three weeks and then Riley will have her MRI. So far so good. Riley is still maintaining her weight which is no easy feat. It is like we are starting all over again. It is much easier this time since she can tell us what she like and doesn't like. It is like we have a talking infant. Quick someone call the National Enquirer. Any ways back to reality...
    For those who haven't heard, we have started a team for the 2nd Annual HopeWalk. Please check the following link to either join our team or donate: Our team name is Super Riley. 
    Thanks everyone for reading.
  • FRIDAY, AUGUST 6, 2010 2:28 PM, MST
    Riley is finally done with radiation. Woo hoo!!!! We are so proud of her. She has done wonderful throughout the entire process. She truly loved going to see Carol in the morning. I never thought that she would like to go to the doctor but today she proved me wrong. We had an appointment to see Dr. Graham after radiation. When we pulled into the parking lot she actually let out a "whoopie" and pumped her fist. It was too funny. Well I have to cut this short since I have a list a mile long to get accomplished but I plan on putting some more pictures on Shutterfly this weekend.
    Thanks for reading,

  • SATURDAY, JULY 31, 2010 9:40 AM, MST
    Riley has 5 more treatments left. She has done amazing so far. There has been little affects on her. A little discoloration on her head but that's it. She has handled everything beautifully. Yesterday I had the opportunity to experience what Riley goes through every day with the sedation. I had to get a tooth pulled, lucky me. Sedation is not something I would want to experience every day but kids have a way of getting through hard things without even blinking an eye. Riley has been having a great time tearing the house up. For some reason dumping things out is a lot more fun than picking them up. Oh well, she'll learn that picking up goes with playing. Right now we are headed down to see Grandma LeeLee and Grandy. Got to help put a door in. I'll update with some new pictures when we get back. 

  • SUNDAY, JULY 25, 2010 2:00 PM, MST
    Yesterday was such a huge success. We made over $8000 for Gifts From Riley. I can't thank everyone enough for all of the contributions, donations and time that was given to us in order to make this event successful. Everyone that volunteered yesterday, thank you (Kathy)! We are just truly amazed that people are so willing to give. We are on the way to being able to help families going through what we are.
    Now an update on Riley...She has been handling radiation great. We have only 10 more treatments to go and I don't think that it is going to get any worse than it is which isn't bad at all. She had such a great time yesterday. She was able to play with some cousins that she hadn't met before. Everyone was very happy to see her when she made it to the restaurant yesterday. She truly lights up the room everywhere she goes.
    Thanks for reading.

  • WEDNESDAY, JULY 21, 2010 6:02 PM, MST
    Sorry for the long delay in posting...Riley has been doing great with radiation. We should be done around August 6th. She has developed quite the sense if fashion. She is in love with her cowboy boots. Her counts are also maintaining so we don't have to visit the clinic for a couple of more weeks. She has been "helping" Ryan and I sort all of the wonderful gifts/prizes that have been donated for the big event. She is really a little busy body. I don't think she stops talking for a second. At least I have someone to talk to now. Well I have so much to do before Saturday.
    Thanks for reading.

  • FRIDAY, JULY 16, 2010 3:20 PM, MST
    Hello everyone...Riley is doing great. 13 treatments of radiation down, 15 more to go. I am writing to ask a favor of all of our AT/RT families out there who might be reading this. I would like to be able to post pictures of kiddos with AT/RT on our website for Gifts From Riley. I want put a face to this horrible disease. I want to find a cure. If you are interested in letting us use a picture please email them to With your permission I could also use the pictures that my mother-in-law used for her DVD. Whatever is easier. Thank you for reading and for keeping us in mind. 


  • WEDNESDAY, JULY 14, 2010 7:53 PM, MST
    Well radiation is going great. Riley is wonderful. Her counts are staying up and she is staying active. Some times a little too active but I will take it. She is still eating like a champ but it comes and goes sometimes. I have been given a few ideas on how to sneak the good stuff into what she is currently eating and I am eager to try them out this weekend. We will visit the clinic on Friday for another count check. I am sure they will be fine. Ryan will be coming home on Sunday to help with the final preparations for the benefit on the 24th. I hope to see many of you there. We should be holding an extended raffle but I do not the have the details as of yet. I must keep this short since I have a million and one things to finish before bed. The morning comes way too soon.

    Thanks for reading.

  • SATURDAY, JULY 10, 2010 8:56 AM, MST
    Here is the link for the hotel that we have been able to get a discount for our event on the 24th...

    You can also make reservations by calling 1-888-867-4009 requesting the Gifts From Riley Group.

    Please let me know if there is any problems with making reservations. 


  • FRIDAY, JULY 9, 2010 2:12 PM, MST
    Well we had a wonderful time in Colorado. Though the drive was long it was well worth it. Riley had a great time playing with all of her cousins and being able to run around like a normal kid. Wednesday brought us an early morning and my first day back at work. Riley has been doing amazing with her radiation treatments. She is truly inspiring with how she handles the treatments. She has about 20 more treatments to go and I am pretty sure that she will be able to handle them just like she is now. 
    Update on Gifts From Riley...things are moving forward with the event. We have been given many items to use for the raffle and auction. Ryan and I are extremely excited. We are hoping for a huge turnout. We have also been blessed with a new website. It is still under construction but should be launched soon. We are still waiting for the state to approve our articles of incorporation. Typical government. We should be able to send in our application to the IRS soon too. The event on the 24th will be sponsored by the Children's Cancer Network so that we will be able to accept donations tax-free. 
    Well Riley is demanding my attention right now so I must go.

    Thanks for reading.

  • FRIDAY, JULY 2, 2010 12:50 PM, MST
    Great news...Riley's MRI showed no signs of tumor. Yippee!!! as Riley would say. It was a very long morning but well worth it. We were able to get the results before we left the RadOnc office. We are leaving for Colorado tomorrow for a much needed mini vacation. I will update when we return.

    Thanks for reading.

  • THURSDAY, JULY 1, 2010 12:04 PM, MST
    Just a quick update...Riley has a MRI scheduled for tomorrow. It will be of her brain and spine. After that is completed she will have her radiation treatment. Riley is still acting like Riley. Little miss attitude. WOW...she's really blossomed into a little ball of personality. 
    I'll updated tomorrow after I find out the results of the MRI.


  • WEDNESDAY, JUNE 30, 2010 7:11 AM, MST
    Let me try this again...Riley was not in the mood last night when I was trying to update so she decided to do her own update on top of mine. Radiation is going well. Riley wakes up and then wants to go home to eat. I really thought this was going to be a little harder on us but who knew the Riley would be so patient with it. She will even hold out her finger for the pulseox and tell Carol (radiation RN) what leg she wants the blood pressure cuff on. Amazing little girl. 
    We have also had some other excitement. On Monday when I woke Riley up to go to radiation I noticed that she wasn't walking her normal walk. I gave her a little time to work it out but by lunch time she was still walking funny. I called Dr. Graham's office and they passed the message onto Dr. Graham who called back later that day. He said that if it didn't improve that we should make an appointment. By lunch yesterday it hadn't improved so we headed to the clinic. Now I want everyone to know that during this whole time Riley has been acting totally fine. She's been eating, playing and sleeping fine. She's been Riley. Yesterday's appointment determined that she will need a MRI on her spine and legs, she was put on a steroid and she needs red blood cells. Today she is getting radiation then we will head to Cardon's for a transfussion. The MRI will be scheduled for sometime soon. Please don't worry that this is something big. I have total faith that this is just a minor speedbump.
    I will post again when I know when her MRI is.
    Thanks for reading.

  • MONDAY, JUNE 28, 2010 10:36 AM, MST
    There is so much to tell...yesterday was such an amazing day. Riley and I went to the dog wash that was being held for her. Just to remind everyone, Kelly's Kritter Clips held a dog and car wash with all donations going to Riley. I met so many amazing people. I had such a great experience meeting these strangers who came out to support us. Riley lasted until about noon then Poppy Bud took her home for a nap. It turns out that she never did go to sleep but talked all the way to her great-grandparents house and then all the way back to ours. But back to the event...truly amazing the amount of donations that were given. There are still people in this world who are willing to help a complete stranger. 
    I hope to turn this into an annual event, maybe in the fall since it did get pretty warm yesterday (108). We are moving forward with the event in July. Things are going great with the planning. I hope to see many of you that read this there.
    Now to Riley was the first day of radiation. Riley woke up ready to go. She only said "eat" one time. I was able to distract her so we were able to get in the car and on the way. Her weight is down a little but I am sure we can get it back up in a couple days. Riley entertained the nurses while the room was getting ready. I was able to take her into the room and be with her while she breathed in the gas to sedate her. We found out today that she will be able to have all of her treatments under the gas sedation rather than having to be accessed and meds put in through her port. It makes life much easier to not have tubes hanging out of her. Today's appointment took a little longer than the others will since they had to do some x-rays too. She woke up from sedation a little grumpy but as soon as she got her binky she was a happy camper. She even smiled for a picture for Ryan. Tomorrows appointment should hopefully be just as easy. 
    We stopped by the Binkies to give them their camera back and Riley enjoyed some pancakes. Right now she's playing with her doll stroller and her purse that Grandma Diane gave her and that Grandma LeeLee filled with money and lipstick. My little diva.
    I have put up a site for Gifts From Please take a look and let me know what you think. It is still a work in progress but I wanted to get something out there since we are having the event and I will be putting the web address on the next round of bracelets that we order. Wow this is really's almost like Ryan wrote it!
    Thanks for reading,

  • FRIDAY, JUNE 25, 2010 4:48 PM, MST
    Well Sunday is the start of our fundraising campaign. The dog wash is going to be a lot of fun. Riley has always loved dogs so I can't wait to see how she reacts to all of the dogs. I am going to have to get Riley to bed the night before super early. It's going to be a long day. Ryan isn't going to be able to make due to a work commitment. I will post some pictures as soon as I can. 
    We also have a date for the fundraiser...July 24, 2010. It will be at Skippy's Grill and Cantina located at 23858 S. Power Road Queen Creek, AZ 85242 starting at 3pm.
    Ryan has been working hard. We have been able to get a discount at one of the local hotels. If you are going to be coming from out of town please let me know and I can forward the link to the hotel. There will be a raffle and also a silent auction. Please spread the word.
    Riley is still doing great. We start radiation on Monday. It's going to be a lot of early mornings but we'll get through it.  
    I must go...Riley is in the pantry again so who knows what she is dragging out. 

  • WEDNESDAY, JUNE 23, 2010 11:12 PM, MST
    Well I must apologize for the delay in posting...with Ryan being home I don't seem to get much time to do anything. Riley is clinging to me like a sock out of the dryer. Hopefully during these next few days I will be able to accomplish my very long list of tasks. We have the dog wash coming this Sunday and now we have a date for the 1st Annual AT/RT Benefit, Saturday, July 24th. I am getting a flyer together and will get some more information out to everyone in the next couple days. I know we will be selling tickets for a raffle and there will also be a silent auction. Please spread the word
    With Riley's MRI being completed, we will be starting radiation on Monday. I really wanted to start after the 4th of July but I guess it doesn't really matter. We will be having 28 treatments which is less than what we originally thought we would have to do. Riley should get through all of this like nothing ever happened. She is eating like a teenage boy and gaining weight. She is even willing to try some new things but it is still mainly waffles and chicken. Oh well at least it is something. 
    I just realized what time it is and I need to get to bed. Now that Riley can open doors, she seems to waking up extra early.
    Thanks for reading,

  • TUESDAY, JUNE 22, 2010 12:20 PM, MST
    No evidence of disease!! Woo hoo! Just wanted to let everyone know. I'll post another update today when we get home. 

  • MONDAY, JUNE 21, 2010 7:10 AM, MST
    Riley is getting her MRI. I will post an update once we know the results, which hopefully will be later today. 

  • THURSDAY, JUNE 17, 2010 7:54 AM, MST
    Happy Birthday my sweet girl!!! For those who know me really well know that I am not super religious but today I am thanking God and whoever else has made this wonderful day happen. Seven months ago, this day was one that I didn't think would be joyous but boy was I wrong.
    We found out that Riley's next MRI will be on Monday June 21st. Please please please pray that the chemo and stem cell transplant did their job. Riley deserves it.
    Thanks for reading,

  • MONDAY, JUNE 14, 2010 7:52 AM, MST
    Well not much to report here... Riley has been playing and eating. And eating and eating. The kid is a machine. I can't imagine what she would be like if she was on steroids. Riley has also been showing us what it is like to have a two year old. I never thought my precious little baby could act like such a monster but yes she can! It really isn't that bad but it is hard to adjust to her wanting to walk around the store instead sitting in the cart and listening to what I tell her. She is her own person now and you can't begin to tell her what she has to do. Luckily she keeps the outbursts in public to a minimum. Ryan and I have become very good at ignoring the screaming kid we have. Don't get me wrong...we only ignore her when she is being the screaming kid. She figures out pretty quickly that screaming doesn't get her what she want. 
    We have gathered all of the supplies for Riley's party that is quickly approaching. It was meant to be small but that never seems to happen when we throw a party. Hopefully today we will be able to speak with Tom at Skippy's to find out the date of Riley's benefit dinner. That will be one party that I won't mind having a few hundred guests at! 
    I am trying to go back to work but let me tell you it is really hard. I should be getting a call today to figure out what schedule will work best for the office and myself. If only I could get paid to stay at home. Not a lot, just enough to pay a few bills.
    Well thanks for reading my ramblings today.

  • THURSDAY, JUNE 10, 2010 4:26 PM, MST
    Today Riley had her last appointment in Tucson. Her platelets are starting to rise which is wonderful. She also had her catheter removed today. The "surgery" was rather fast and she recovered quickly. She had to have her port accessed due to it be almost a month. while it was accessed she was given a antibiotic. After that was completed we were able to leave the clinic. We met with Uncle Turt for lunch. Aunt Kitty made the trip with us which made it much easier with the extra pair of hands. Riley is doing wonderful. She is sitting right next to me eating some chicken nuggets and watching a movie. She loves her chicken! It is wonderful to see her eat so much and so enthusiastically. I am waiting for the phone call that will tell us when her next MRI is. We're going to spend the weekend relaxing and cleaning, hopefully more relaxing.

    Thanks for reading,

  • WEDNESDAY, JUNE 9, 2010 2:43 PM, MST
    Just a quick note:

    Yesterday we were contacted by another patron of Skippy's. Her name is Kelly and she is the owner of Kelly's Kritter Clips in Chandler and Queen Creek. She has offered to hold a dog wash with all donations going to Riley. The event info is below. We are truly grateful for all of the support that our community has given us. It just shows that the human spirit is still there.

    Dog Wash 2010 
    Bring your fury friend for a bath, brush with nail clip and bow or bandanna.
    Sunday, June 27, 2010 
    10am - 4pm 
    Kelly's Kritter Clips 
    18914 E. San Tan Blvd. Queen Creek, AZ 85242 
    Enjoy hot dogs and snow cones while you wait. 

    We are hoping for a huge turnout. If this one works out there is a possibility that this might be a annual event.

    Thanks for reading,

    PS Riley is doing great. Will update later.  

  • TUESDAY, JUNE 8, 2010 8:55 AM, MST
    Sunday afternoon we went to Cancer Survivor Day at Cardon. Riley was able to see many of the people that had taken care of her during her stays. She was even able to see Tatumn. I don't think that the two of them were ever really able to play together while we were at the hospital since Riley was always in isolation and would never wear a mask.  
    Yesterday we went back to UMC to have a check up. Riley's platelets are hanging in there and she didn't need a transfusion yesterday. We have another appointment on Thursday to check her platelets and then her catheter will be removed right after.
    Riley has been doing great. She is eating a little better and even drinking more Boost. These next few days will be spent getting ready for Riley's 2nd birthday. I can't believe she is two. These last 6 months have been a crazy but the light is at the end of the tunnel. Riley is a strong little girl who continues to amaze Ryan and I every day.

    Thanks for reading,

  • SATURDAY, JUNE 5, 2010 2:41 PM, MST
    We are home! Riley visited the clinic on Thursday and her platelet level was holding. We will go back to the clinic on Monday and then again on Thursday or Friday, which will be the day that she gets her catheter out. Riley has lost a little weight but she is still eating. She would drink pancake syrup out of the bottle if I let her. Our biggest obstacle is getting her to drink the Boost again. If we can, we'll be back in business. 
    Tomorrow Ryan comes home from his first week back at work. His current schedule allows him to work three days and have four off. He seems to be a little tired but this schedule is the best that we can ask for. 
    Gifts From Riley, Inc. is official. We filed the paperwork with the state yesterday. Our next step is to file the paperwork with the IRS to gain the 501(c)(3) (tax exempt) status. The fundraiser dinner will be at the end of July. We will be selling tickets to the event. Once we have the date and more details, I will post the information.
    Thank you to everyone for all of the support. We wouldn't have been able to make it through the last 6 weeks without it. A big thank you to Ron and Debbie for allowing us to move in with them for several weeks. We are forever in their debt.

    Thanks for reading,

  • WEDNESDAY, JUNE 2, 2010 9:58 AM, MST
    Well Riley has been doing outstanding. We were given the weekend off from the clinic. On Friday she received both platelets and red cells. Dr. Graham even cut back her TPN to every other day. She had a great weekend visiting with her dada and dogs. Also with Aunt Kitty, Uncle Turt (Curtis), Leelee and Grandy (her new name for Granddaddy Jim). Yesterday we visited the clinic and found out that Riley must be making her own platelets because her counts were much higher than expected. Dr. Graham even took her off the TPN. He even switched her antibiotics to be given by mouth instead of IV. We are free from all pumps now. It makes life so much easier. Tomorrow we head back to the clinic to see what Riley's counts are and if the are maintaining themselves we should be able to head back to Gilbert. We would come back to Tucson next week for another check and to have her cathether removed. 

    We are so close to being finished...normal life here we come!

    Thanks for reading,

  • THURSDAY, MAY 27, 2010 10:35 AM, MST
    Riley has been having a great time these last few days. She has even had a few days off from the clinic. Right now we are waiting for her platelet levels to stay up so that we can come home. She is even starting to eat a little. Dr. Graham hopes to cut back on her TPN so she will start eating more. Riley is now the proud owner of a baby carriage from cousins Kyle, Kelan and Cady. She loves it. It has gotten her to do more walking. She is now not as unsteady as she was a few days ago. She is an amazing little girl. We spent some time at Grandma Lisa and Granddaddy Jim's. Riley loved being able to see the dogs and the horses. 
    Riley will have a MRI in a few weeks. In July we will begin radiation and then there will be another MRI. We will then have MRIs about every 3 months. Ryan and I feel that Riley's tumor has responded to the treatment and that is all that we can ask for. We are very grateful that Riley is doing as well as she is. It is a miracle.

    Thanks for reading.

  • MONDAY, MAY 24, 2010 1:33 PM, MST
    Yesterday was our first day without Ryan. It was pretty lonely but we survived. Today Riley is getting platelets so tomorrow we get a free day. We will head down to Sierra Vista to visit the dogs and the grandparents. Hopefully we will be heading back to Gilbert by the end of the week or early next week. Riley is still on the IV nutrition. If she doesn't start eating by the middle of the week Dr. Graham will start her on a course of steroids to increase her appetite. She has been pretty emotional these last few days and the steroids will probably make it worse but it has to be done. She wants to eat but still hasn't taken that first bite. Not even popcorn. It will happen one of these days. We are almost 4 weeks post transplant. Our time here in Tucson has really flown by.

    Thanks for reading.

  • SATURDAY, MAY 22, 2010 10:08 AM, MST
    Good morning everyone, Riley has been out of the hospital for a few days now and she is slowly adjusting to being away. We have been staying with Uncle Ronnie and Aunt Debbie in their humble abode. Riley enjoys playing with T-Bone and Shadow as well as the cats. Her energy level continues to build as well as her confidence in walking again. Last night we went to a bbq at Cousin Christies where Riley played with Cady and Kelan. Of course we left with more toys than we brought. One in particular is a stroller that Riley would not let go of. We were forced to take it with us or leave her behind. She grabbed onto it in a half bear hug as we drove back to Casa de Townsend. More good news, Dr. Graham thinks Riley should be able to go home in about a week or so. Her blood levels continue to go up and down which necessitates blood products every couple of days. Riley will definitely be ready for her birthday party and hopefully, the last portion of her treatment. We have decide that when her treatment is over we will have another Birthday and end of treatment party for her. I must return to work on Monday but I know Jen will update as possible.

  • SUNDAY, MAY 16, 2010 8:54 PM, MST
    What can we say these past couple of days have been some of the longest yet. Not long because of anything with Riley rather we are seeing the light at the end of the tunnel. 

    Friday Riley got dressed and went on several Easter egg hunts around the halls. She has had really great days with her energy level becoming what it once was. On Saturday Grandma Lee Lee came to visit and stay with Riley for the night. To make the day extra special Riley was given a four hour pass to attend Dr. Grahams going away party which was held at Lincoln Park. The party was a fantastic send off with lots of his past and present patients in attendance. As soon as Riley breeched the doors she felt the breeze on her face and took a breath of fresh air. This smile came across her face and she let out a sinister chuckle as she knew we were on a jail break. Riley immediately began asking for the car and then home. When we got to the park she basked in the sunshine with a smile on her face and watched us watch her. It was indescribable to see her enjoy herself as a normal kid. A little reserved but yet normal. (For those of you who know me, realize that I am hardly ever, if at once at a loss for words). 

    Now for the light at the end of the tunnel. Wait for it, wait for it....Ok! I can't hold out any longer. Dr. Graham is 99.9% sure that Riley will be released tomorrow. That's right you heard it here! By bedtime tomorrow we will be out of here. However, we will be in Tucson for another couple weeks for clinic appointments. We will be on our own, well at least at Uncle Ronnie's house.  
    I hate to give great news and run but Riley is giving her babies a bath and she is calling for both Mom and I to help. As always we will keep you up to date with the latest and greatest!

    FYI...For those of you who shop at Home Goods, they have donation boxes set up at their registers for The Jimmy Fund which funds children's cancer research at Dana-Farber. A couple of dollars goes a long way!

  • THURSDAY, MAY 13, 2010 9:20 AM, MST
    I am updating the Journal to correct an omission on my part. To come clean, I must say. When I began typing last night I was interrupted when I had to go and speak with a Tucson police department officer in regards to some KIND, CARING young lads who wanted to take my truck last week. To make a long story short, when I returned to complete the update, I must have been away for to long and it was acting funny. 

    So without any further delay, I would also like to recognize Rebekah Van Nierop for her time and effort in manning a table for all the AT/RT kiddos at the Relay for Life. Unfortunately, Rebekah is no stranger to AT/RT and has started an annual walk to remember their son Jonathan. Johnathon's Walk is approaching it's fifth year. I am also proud to say that she has agreed to be a board member for the Gifts from Riley Foundation. Again thanks to all who have supported Riley and Us in this chapter in life.

  • WEDNESDAY, MAY 12, 2010 6:41 PM, MST
    Friday and Saturday was the Relay for Life in Sierra Vista. Grandma Denise and Aunt Tracy made 40 plus bags in support of some of the AT/RT kiddos including Rileys' friend Tatumn. Thanks to Cousin Courtney for participating in the walk and Aunt Nancy and Sharron Page for manning a table to bring awareness to AT/RT cancer.  

    Riley's weekend was filled with excitement. Riley spent the weekend with Grandma Lisa. While Jen and I spent the weekend about a 1/2 mile away at the Marriott Hotel. For us, it was a long awaited reprieve to sleep on a normal bed without interruption. Of course we couldn't stay away to long and we spent most of the day in Riley's room. Riley and Grandma spent quality time together playing and watching the same movie over and over. We know how infectious Riley is and we hope that Grandma Lee Lee was able to catch up with her. Riley also got a visit from Great Grandma Judy and Great Grandpa Charlie. They came to visit after Charlie completed his doctors visits (all is well with his ticker)!  

    Monday was rather quiet with the exception that when Riley woke up she immediately began asking for shoes. Her request was music to our ears because she has't said much. As Jen got Riley dressed, Great Grandma Judy arrived to help Riley put a fashionable gown and mask on. For the first time since the transfer to the Children's hospital Riley walked out of the room. Jen and G.G. Judy took Riley for a walk down the hall where they played in the play room for about an hour. As Grandma Judy went to find G.G. Charlie for the trip home the Binkies came in and took her for a cruise in the Little-Tyke Firetruck. Yes, Riley began to wonder the halls like she is in search of some hidden treasure. It was a good thing the Binkies brought their walking shoes. All in all Riley is returning to her old self and she somehow maintains her spirit. 

    Tuesday and today she continued to put smiles on the Binkies faces as she snuggled with both. I know what you are thinking. Yes, after a little coaxing Bud shared Riley with Jackie. It was extremely nice to have everyone show up to help keep an eye on Riley. Jen and I were able to get out and get a little sun :)! and do some running around. Thanks for everyones help. We have become all to accustomed to living in a hospital room.

    Riley has had her battles with recovery. She had the fevers which were unexplained for about a week, then a culture returned with an Adeno virus which has been the culprit of her discomfort. She has received several blood and platelet transfusions to resupply her system. Dr. Graham feels that we are approaching the breakthrough with her treatment. The Binkies returned home this evening after we dined on a delicious Italian meal. Riley was sad to see them go but she knows her visitors always return. With any luck Riley will soon be wandering the halls looking for other babies. I know it has been a couple of days since our last update but I needed to get past writers block. Thanks for reading!
    Good night from Tucson! 

  • SUNDAY, MAY 9, 2010 5:39 PM, MST
    Not much to report. Riley's count is going up slowly. She is feeling some bone pain right now so she is on morphine regularly. Riley is fighting through it though. She is an amazing little girl. Her appetite is still non existent but she is drinking water now. Any day now she will want to eat pancakes and popcorn. Ryan and I were able to spend a couple nights away thanks to my mom. It was wonderful to be able to sleep without any beeping or nurses coming in the room every 15 minutes. Not much else to say but of course I am not Ryan. I will let him give his version of the past few days so stay tuned.

    Thanks for reading.

  • THURSDAY, MAY 6, 2010 12:32 PM, MST
    The past couple of days have been pretty much the same except for the two day visit from the Binkie's which brightened up Rileys' days. She even managed to say Papa and Mamu I think I heard a Dada but it was mumbled. This time Papa brought a change of clothes which was needed. Riley has had issues with vomiting which reminds me of "Slimmer" from Ghost Busters. She has allowed us to use the suction tube to devoid her mouth and throat of this substance which coats her mouth. Riley has had a steady fever for the last couple of days which has ranged from 101.0 to 103.8. I remember when I had a fever of 104.2. I thought the end was near but not Riley she makes an occasional groan and still manages a chuckle every now and then. Since the Tylenol recall, we were forced to try adult strength in a liquid form but it was to much volume for her to keep down. Last night we finally got a concentrated dose to give her and she has kept it down. The fever is confusing because her cultures and tests have returned with negative results. Dr. Graham feels that it may be caused from the production of stem cells and her body healing itself. For the most part we have been able to keep her entertained and comfortable.  

    Yesterday morning, as I wandered the hallway looking for some towels and blankets I was introduced to Kevin (Diamonds CEO) by Kris (nurse manager) they were discussing a previous conversation in which Kris inquired our opinion of the facility and We Gave It To Her. We also informed her of Rileys foundation and she asked us be on a panel to address the issues. Because she was basically a captive audience we (Jen would say I) talked her ear off. More like held her ears hostage until we told her that Diamond hospital is way behind Cardon. Hello ladies and male nurse at Cardon! Anyway, the CEO (Kevin) noticed that I wasn't looking my best. I informed him that I really can't do much more with my hair and it was the result of minimal sleep. Throughout the night as Riley would cough or choke on the "stuff" I was up and out of bed as if it were on fire. My goal was to get to Riley before Jen woke up. He was surprised that both Jen and I were staying here. I told him that I couldn't imagine doing this alone but then again I'm not a mom. 

    This morning I received a phone call from a patron of Skippy's (our local hang out and future host of Rileys' dinner). Her name is Kim and she works for an billboard advertising company out of St. Louis. She saw the donation box that we have set up for Riley and after speaking to Tom (Skippy's owner) she wants to help advertise the dinner and bring in large donations. Who would have thought someone so far away would be touched or moved enough by Riley to help out so much. This call was a wonderful start to our day. Especially after I had typed the journal update and experienced a computer problem. I have discovered that what you type first is always better than the second time. 

    Like Kris, I have held your eyes and mind hostage enough and must tend to more pressing issues like procuring more coffee. Thanks again for you continued support!


  • MONDAY, MAY 3, 2010 1:47 PM, MST
    Afternoon to all! Riley had some special visitors yesterday! Granddaddy Jim and Grandma Lee Lee came to visit and give Jen and I a quick break. Jen and I enjoyed a nice steak lunch only after driving all over Tucson in a feeble attempt to locate a restaurant that was open. Like the time before, we let them leave without giving them the dog food to take with them. I hope Jake and Laney will forgive us. Riley has been doing her best to fight through the process. She is sleeping for the better part of the day and night except for the interruption to vomit. She is gagging on a thick slimy saliva which comes up quickly. It reminds me of the slime we played with as kids. We have been trying to use the suction tube but she doesn't like it much. Doctor Graham has been great at addressing Rileys' needs. She has been put on a regime of anti nausea medications, a low dose of morphine to help with the pain and antibiotics to combat the fever with comes and goes. With any luck her stem cells will begin to recover and she will start to feel better. We can't wait for her to begin talking and walking again! Thanks all for your thoughts and prayers!  

  • SATURDAY, MAY 1, 2010 11:13 PM, MST
    Riley is now showing the effects of the chemo. She has been vomiting since last night and keeping us busy to resupply the linens. Jen and I have been at the ready and Riley has been really strong through each bought. She slept most of the day and is currently running another fever. We are waiting for the blood results to see what is causing it. Doctor Graham is trying to stay a step ahead and adjusting the antibiotics. It is amazing to see her deal with everything so well. Just like at Cardon's Riley has captured the hearts of the staff here.It has been a long day and I'm at a loss for words. Good Night  

  • THURSDAY, APRIL 29, 2010 8:12 PM, MST
    Last night when I returned from California, I walked into the room and a rather familiar odor hit my nose. For those of you that have been in our shoes know that smell well. A small clue? It happened to be a favorite side dish of mine and is usually served in fine restaurants at ridiculous prices. Now the detective in me knew that Jen and the Binkies enjoyed lunch from Boston Market. I assumed that I smelled creamed corn from lunch. Yes, I made an Ass out you and Me! When I leaned over to kiss Riley I was nearly knocked out by the overwhelming odor. The smell is caused from the preservative in the stem cells. Jen never liked it and Riley will now revolt if I make it.

    Today was uneventful except for a visit from Rebecca. She brought Riley a princess and rainbow balloon as well as a set of angel wings with a skirt (cute). The visit was short as we had so much to talk about. Rebecca was so excited to see Riley that she wouldn't even sit down. When Rebecca tried to leave we got onto other topics and this continued for about an hour or so. Riley has been rather reserved just napping and watching lots of T.V. Fortunately, her appetite has grown a little for popcorn. She is currently on an IV food called TPN. This product will help keep her weight up while she eats less. It is estimated that she will be on it for about two weeks. 

    The move from the old side of the hospital was welcoming, for me at least. If I had to sleep another night on the bench I don't think I would be walking. It didn't take long for me to find problems with the room. The only apparatus that I lacked was a new roll of blue tape to point out problem areas. 

    Our new accommodations are pleasant. At first glance it looks like an IKEA display minus the yellow line on the floor. There is an opaque glass door that slides for the bathroom door and the classic pine furniture. Here we can sleep on a nice full size pull out couch. Bathe in a new shower that is ICE cold. Yes, ICE cold. There seems to be a glitch in the hot water. I have always said, there's nothing better in the morning than a cold shower. Maybe it's an old wives tale? Anyway, it is clean and they are actively trying to fix all of our concerns. As we have discovered in the past, obtaining a recliner is a small task but after several hours they found one. 

    That brings us to the point of the foundation. It is apparent that the focus groups are comprised of bankers and ri-tards (borrowed from The Hangover). For some reason or another the hospitals just don't quite grasp the idea of small comforts for parents and patients. Each new hospital stay brings new ideas and gives Jen something to vent about. She wishes to make it her mission to travel to hospitals and provide her little touches to make other parents stays more comfortable. I am sure I could bore you with more of my stories but, I need to ease back into it. I have been told, too much of me can be overwhelming.
    Good night from Tucson! 

  • WEDNESDAY, APRIL 28, 2010 4:36 PM, MST
    Riley has a fever. She is on antibiotics now. I will post when her cultures come back. 

  • WEDNESDAY, APRIL 28, 2010 12:59 PM, MST
    Riley has had her transplant. It only took about 40 minutes. She vomited a little during but is doing much better now. She has to be monitored for the next few hours so it's movie time. Now the waiting begins to see if it worked. Tonight Riley will start getting IV nutrition. She is really doing amazing.

    Thanks for reading and praying.

  • TUESDAY, APRIL 27, 2010 9:12 PM, MST
    Riley is still doing great. The nausea is starting to take hold. She is making it through the day only throwing up if she eats. So basically she doesn't eat. Dr. Graham isn't too concerned with that considering he plans on starting her on IV nutrition either tomorrow or Thursday. She is adjusting to the new room and floor. I know she misses the fish tank and Nemo but I think she'll get over it. The playroom that is on the unit was very chaotic but thanks to several volunteers it is now a place the Riley can go in and enjoy herself. She is being a real trooper with wearing the mask and gown each time she wants to go out. She has matured right before our eyes into a little girl. She no longer is our baby. I can't tell you how much I miss that but I know she still needs Ryan and I to love her and help her get through this. She has proved to us these last few days that she wants to get through this and will come out victorious. She is our fighter and she can't be stopped.
    Thanks for reading and praying.

  • SUNDAY, APRIL 25, 2010 9:31 PM, MST
    Today was Riley's last dose of chemo. She took it like a champ. She hasn't had any vomitting due to the chemo. She is still in great spirits and continues to amaze us all with her will to fight. The next couple of days should be uneventful. 
    For everyone who doesn't know, our friend "Grandma" Diane has organized a day of prayer & fasting for Riley tomorrow. I would like to have everyone include our friend Jake Love in your prayers. He has been having a rough time fighting a serious infection and needs some extra prayers. 
    Thank you for reading and praying.

  • SATURDAY, APRIL 24, 2010 10:09 AM, MST
    Riley is still doing great. Her appetite is disappearing but she is still in a wonderful mood. Two more days of chemo then a two day wait period before her transplant. Yesterday I was able to tour the new children's hospital here at UMC. I have to admit that I wonder what is going through the minds of whoever designs these hospitals. Not one is designed in a way that makes sense for parents or the nurses who have to work there. I want to make it my mission to fix that. I don't know how I am going to do but it will happen. 
    Riley is going to have some visitors today-Papa/Granddaddy Jim and Grandma Lisa. Riley still doesn't call my mom anything. We can't figure out why she won't give her a name. Oh well, she'll do it eventually. Tomorrow Aunt Kitty and the Binkies will be here. Riley is going to love all her visitors. 
    The unit that we are in has a combination of children and adults. Currently Riley is the youngest on the unit and also the loudest. We run up and down the halls and get super excited about seeing the fish in the tank (hence the new background on the site). There is a clown fish in the tank that Riley calls Nemo. She loves to ride around in the car that looks like a fire truck. I know people don't mind her loudness but that part of me that doesn't want to have that kid that is loud and bothering others around them. Well Riley wants to go see the fish so I must go.

    Thanks for reading.

  • THURSDAY, APRIL 22, 2010 9:31 AM, MST
    So far so good. Riley is tolerating the chemo wonderfully. No vomiting yet and hopefully none at all. She is having a great time playing with her toys and "type" on her computer that is in the room. This is probably the best round of chemo that she has had so far. I am sure it will get worse but I am hoping that it doesn't. Ryan and I have adapted to our sleeping arrangements. We switch each night between the bed and the bench by the window. I can sleep anywhere while Ryan says he needs to get some more meat on his hips so he can sleep on the bench. Big baby. 
    Thanks for reading.

  • TUESDAY, APRIL 20, 2010 9:58 AM, MST
    We made it to Tucson yesterday. We are in the Cinderella room (3715). Disney redid a couple rooms here several years ago as part of Extreme Home Makeover for a Gilbert family. Riley's chemo has just been started. She will have chemo for about a week and then she will be given her stem cells back. After about 10 days she will become very sick. Once she recovers, we will be released but will return daily for count checks and transfusions if needed. Those appointments will taper down to a couple times a week then to maybe once a week then home. Next Tuesday we will move to the new pediatric tower here at UMC. We are trying not to make ourselves too comfortable in this room. Ryan will be returning to Phoenix today for an appointment but will be back this evening. Riley is in a great mood and slept really well last night. She even wore a mask for a little while this morning so we could take a walk. So far so good here in Tucson. 

    Thanks for reading.

  • SUNDAY, APRIL 18, 2010 8:01 PM, MST
    Tomorrow is the day...We head down to Tucson to begin the transplant journey. Riley has had a wonderful last couple of days. She was able to spend some time playing with other kids which she doesn't get to do very often. On Thursday, Riley had a hearing test and everything is fine. Friday, Ryan & I met with the attorney that is going to be helping us with Riley's foundation. Things are starting to move forward for our family. We have had a few speed bumps this past year but we have overcome them and will continue to in the future. These next couple months will be difficult but we will overcome them just like we have overcome everything else that has been put in front of us. 
    Riley has been amazing...she wakes up every day with a smile on her face and is ready to face the day. She wants to learn everything that she can...she is so curious about how things work. I smile so much at her during the day that my face hurts at night. Ryan and I are so proud to be her parents. We are blessed that we have her in our lives. 
    Thanks for reading.

  • THURSDAY, APRIL 15, 2010 8:52 AM, MST
    These last few days have been wonderful. Riley has enjoyed being a kid. She is still eating great and all around doing wonderful. We will be heading down to Tucson on either Sunday or Monday. Today Riley has a hearing test to make sure her hearing hasn't been bothered by the chemo. 
    Tomorrow Ryan & I will be meeting with an attorney to get Riley's foundation started. Once we become official there will be no stopping us when it comes to making these hospital stays more comfortable for other families going through this horrible ordeal. Ryan and I have been blessed with all of the support that has been given to us and we want to give some of it back to others who might not have the loving family and friends that we have. 

    Please keep Riley's friend Tatumn in your thoughts and prayers as well. She has been having a rough couple of weeks. Stay strong Tatumn.

    Thanks for reading.

  • SATURDAY, APRIL 10, 2010 7:24 AM, MST
    Yesterday we traveled to UMC to have some test run so we can get started on Riley's transplant. She had some blood drawn, had a chest x-ray, an EKG and an Echo-cardiogram. Riley now weighs 22lbs. 9oz. What a chunk!! I am so excited that she hasn't lost any weight these last few days since she hasn't had her NG tube. She isn't drinking as much of the Boost that she was when she was on the tube but she is still maintaining her weight. The bigger she is the easier the rest of this process will be. We were told yesterday that we will be starting her transplant on the April 19. We should be in Tucson for roughly 6-7 weeks. 
    I know many of you are wondering what takes place during the transplant. It is similar to the rounds of chemo that Riley had earlier. She will be given three different chemo drugs then she will receive her stem cells back. Instead of us being able to leave the hospital after her levels come down we will stay in the hospital for about 3-3 1/2 weeks. She will be extremely sick and her counts will be extremely low. Once she has recovered enough we will we released but will still have to stay in Tucson so we can go to the clinic everyday to check her counts. That will be for 2-3 weeks. Then we will be able to come home. Once both Dr. McBride and Dr. Graham agree that she is ready, she will start radiation. We should be done with treatment by the middle of August. Then just regular MRIs to make sure the tumor hasn't returned. Well that is the rest of treatment in a nutshell. 
    Ryan should be returning home next week for good. Please keep him in your prayers as well since he is under a tremendous amount of stress right now and he needs all the strength that he can get.
    Thanks for reading.

  • TUESDAY, APRIL 6, 2010 7:57 PM, MST
    Riley spent another day with the Binkies. Last night I had to remove her feeding tube because it was clogged. I decided to give her today to see if she would eat on her own. She did good enough to keep it out for another day. If she doesn't keep it up, the tube goes back in tomorrow. Her catheter area is healing great. It seems to no longer bother her. Not much else to report. Thanks for reading.


  • MONDAY, APRIL 5, 2010 8:13 PM, MST
    Riley has had a great week. She bounced right back from the surgery and harvest. She has been running and playing non stop. We had a great Easter. Ryan was able to come home for the weekend and help Riley hunt for eggies as she calls them. Who knew that she would enjoy it so much. She even hunted for some more today at the Binkies house while I was at work. Going back to work after three weeks off is nearly impossible.
    We return to Tucson on Friday for some tests. I should find out then when Riley's transplant will be. Then it will be off to Tucson for a month or more. We are still waiting to do Riley's gong ceremony until Ryan is home for good. This past weekend was just too busy.

    I will post later this week after we find out more. Thanks for reading. Look for more pictures to come.

  • THURSDAY, APRIL 1, 2010 9:35 AM, MST
    Riley did amazing yesterday. We arrived at UMC and went straight to the clinic so they could access Riley's port and get a blood sample. Then off to surgery. The surgeon had a difficult time finding a vein that would work for the catheter but was finally successful. They also did a lumbar puncture to make sure there were no cancer cells present. So far her spine looks clear. After surgery it was back to the clinic for her harvest. Thankfully she slept during the whole procedure which took over two hours. She woke up refreshed and was ready to go home. She was a little sore yesterday but seems to be much better today. Today she will have her dressing changed by a nurse here at the house. The rest of the day will be spent relaxing. Tomorrow Ryan is coming home for the weekend. We are both super excited that he will be here for Easter. Riley loves to hunt eggs. Hopefully Ryan will be home for good by the end of next week. 

    Thank you for reading and for always being there for us.


  • TUESDAY, MARCH 30, 2010 11:13 AM, MST
    Yesterday went great. Riley's counts were super high. The one test that they run to see if she's ready for harvest showed that her levels are 7 times higher than they were three months ago! Dr. Graham thinks that we shouldn't have any problem getting a great harvest tomorrow. After her harvest we should be able to spend the weekend at home without any visits to the hospital. Riley is still on her feeding tube. She is up to 22+ pounds. What a chunk...just kidding. It is so good to see her filled out. She has so much energy right now. I love watching her run around like a normal almost 2 year old. Ahhh...normal life. This is what it must feel like. 

    I'll post tomorrow after Riley's harvest.
    Thanks for reading.

  • SUNDAY, MARCH 28, 2010 9:53 AM, MST
    We are home. Woo hoo!!! As of yesterday at 11am Riley hadn't had a fever in over 36 hours and her ANC was up to 260. We left the hospital yesterday around 2pm. There have been some changes to our plans...Riley will have her transplant first then radiation. Dr. Graham was concerned that the radiation would intensify itself when she was given one of the chemo drugs during transplant. This process is extremely sensitive so I am glad that we have the best doctors taking care of Riley. We will head down to Tucson to do harvest this next week. We will then find out when her transplant will take place. Riley still has her feeding tube and it is going great. She is steadily gaining weight which is great to finally see. 
    At Cardon's they have a gong ceremony when a child finishes in-patient treatment. We are going to wait until Ryan comes home so that he can be here to see Riley hit the gong. I will post when we are going to celebrate. Until tomorrow...
    Thanks for reading.

  • THURSDAY, MARCH 25, 2010 1:30 PM, MST
    We are still at the hospital. Riley still has a fever but it isn't as high as it was when we first got here. Her feeding tube is working out great. She is putting on weight. Hopefully it will be enough to get a great harvest next week. We will check her counts tomorrow to see if they are on the way up. That is where they need to be headed in order to get a good harvest. Right now it is just hurry up and wait. Not much else to report right now.
    Thanks for reading.

  • WEDNESDAY, MARCH 24, 2010 11:12 AM, MST
    Yesterday was an exciting day. We had a clinic appointment at 11 am. Everything went fine there. Riley needed to get platelets so we headed over to the hospital. After getting checked in and settled in to the room they checked her temp and that's when we discovered she had a fever. What are the odds that we would make it so long without a fever that she would get one. So here we are at the hospital again. Riley is still running a fever but is going down. We also started her feeding tube again. She needs to bulk up for her harvest next week. It also helps when she isn't feeling good and won't eat. Hopefully we will be able to go home by the weekend. We don't want to miss the chance of getting harvested when her counts are on the rise. 

    Thanks for reading.

  • TUESDAY, MARCH 23, 2010 8:44 AM, MST
    Riley's MRI went great. She also had her mask made for radiation. The mask helps place her head in the same position every time she has a treatment done. She wanted to eat after we were done so we stopped for french fries but she was just too tired to eat. She has been doing pretty good eating but it is still a challenge that we face. Today we will go to the clinic to see what her counts are. Next week we will head down to Tucson for harvest then radiation will start the following week. I am glad that chemo is done since that had so many negative side affects. Radiation will have its side affects as well but it shouldn't be as bad as chemo. Hopefully Riley will be able to have a normal life again. No more staying in the hospital for weeks on end. Finally. 

    Thanks for reading.

  • SUNDAY, MARCH 21, 2010 9:38 PM, MST
    Riley has been well all weekend. No fevers!! Tomorrow we go to St. Joe's for a MRI and to meet with Dr. McBride for her radiation simulation. It is going to be a long day but it will give us some answers so I'll take it. Riley continues to make each day a blessing. It seems like every day she is saying a new word. We watched Aunt Kathryn play softball tonight and it was quit enjoyable to watch Riley scream "Ball" and clap for which ever team was making the most noise. We've had an amazing weekend. I'm keeping my fingers crossed that we will not have to go back to the hospital any time soon. I will update tomorrow when I have information on Riley's MRI. Until then... 

  • THURSDAY, MARCH 18, 2010 9:20 PM, MST
    We made it home. Of course there was a huge stack of mail & notices for packages but it's great to be here. Had to give Riley her shot to boost her whiteblood cells. I've never done it by myself but Riley was great and didn't make it hard for me. We will have a relaxing weekend at home, maybe go to the zoo. Until tomorrow. 

  • THURSDAY, MARCH 18, 2010 6:14 PM, MST
    Well we are almost free. Riley's levels were still too high this morning so they drew them again at 2pm and we are currently waiting to see if they are low enough. Riley has had a decent day. There has been a little attitude and yelling but also some love and hugging. I'll let everyone know when we are released. 

  • WEDNESDAY, MARCH 17, 2010 2:47 PM, MST
    I wanted to put a link to another page that we have...I just uploaded some new pictures of Riley.

    Thanks everyone.

  • WEDNESDAY, MARCH 17, 2010 12:02 PM, MST
    Riley's fifth round is over. We are waiting for her methotrexate level to come down so we can go home but no more chemo for now. She is doing amazing. She is a completely different child now that she isn't suffering from headaches. I think that is what made the first couple rounds so hard on her. She plowed through this last round like it was nothing. She is truly a super girl.
    We should be going home later today or some time tomorrow then after she fights off the fever that goes with this we will be heading down to Tucson for her harvest. Ryan is praying that he will be able to be there with us but right now we are not sure. Don't worry...things are going great. Riley and I make an awesome team and things are running smoothly. Aunt Kitty (Kathryn) has been an awesome help and so have the Binkies. Great Grandma Judy came to visit yesterday. Riley hadn't seen her in a few days so it was wonderful to visit with her.
    Ryan and I have decided to start a foundation to help other families that are going through the same thing that we are. We are still in the beginning phases...paperwork, paperwork, paperwork. We will be also holding benefit dinner in Riley's honor sometime at the end of April or early May. We will keep everyone posted on the status of the foundation and the dinner. Thanks for reading and keeping us in your thoughts.


  • MONDAY, MARCH 15, 2010 1:37 PM, MST
    Day three down, two more to go. Riley is still doing great but has had a little attitude with the nurses. She has been yelling at them every time they come into the room. Today she seems to be in a better mood. Her appetite comes and goes. She is eating popcorn for every meal. I have never seen anyone love popcorn as much as Riley does. I wish it had more nutritional value but as long as she is willing to still eat and drink her calorie drinks that is all we can ask for. Kathryn is here with us this week since she is also on spring break. Riley has been sleeping great this round so that has been a small miracle. The Binkies (great-grandparents) will be here later today to visit. We should be here for a few more days and then hopefully we can stay at home even longer this time. 

  • FRIDAY, MARCH 12, 2010 11:15 AM, MST
    Bring on round 5. Riley had her appointment this morning and is cleared to start. She is in great spirits and is eating like a champ. I have to say thank you to my dad for being such a huge help this past couple of weeks. I don't know what we would have done with out him. He has been so involved with getting Riley to eat that she's gained weight thanks to him. We love you dad!
    We are waiting for her fluids to come up so we can start her chemo. If all goes well we should be going home Wednesday or Thursday. I have all next week of due to spring break. I am looking forward to all the time I will be able to spend with Riley. She is amazing and inspires me everyday. When I think I can't go on I look at her and it keeps me going. Kids are truly amazing. Well I'll try to keep up on the entries but without Ryan here it may not be as frequent. 
    Thanks for reading.

  • WEDNESDAY, MARCH 10, 2010 8:43 AM, MST
    Just a quick update...Riley had a doctor appointment yesterday to check her counts so we could start her final round. They were a little lower than they wanted them to be at so she got a pass to stay home for a few more days. We will go back on Friday to check again and should start chemo that day. 
    On a side note...Ryan is in California starting his trial. Please keep your fingers crossed that it goes smoothly and he will be able to come home soon. 

  • SUNDAY, MARCH 7, 2010 8:40 AM, MST
    We are still at home!!! Riley is doing amazing. We have been having lots of fun playing and trying on all of her shoes. Riley has an appointment on Tuesday to see if her counts are ready to start her fifth and final round of chemo. For everyone who hasn't heard the plan here it is...after this final round of chemo we will head back to Tucson for the stem cell harvest. After that we will come home to start radiation. Radiation will be five days a week for six weeks. I know it sounds like a lot but it really isn't a huge dose of radiation all at once. The radiation only takes about 15 minutes but since Riley will have to be sedated it will take about an hour for the whole procedure. There should be little side affects with the radiation unlike her chemo. That means a whole lot more time at home! After radiation is complete we will head back to Tucson for her stem cell transplant. During the next couple months Riley will have several MRIs to make sure all of this hard work is actually working. If anything changes we will update. We are just enjoying all of the time we have been given with Riley here at home. 

  • TUESDAY, MARCH 2, 2010 10:26 AM, MST
    Well our luck ran out...we came back to the hospital on Sunday evening. Riley had a high fever and was slightly dehydrated. Her fever broke on Sunday night though and she hasn't had a fever since. She is still in great spirits. We are just waiting for her blood counts to go up and for the culture to come back negative before we can go home. 
    Dr. Shah told us today that Dr. Graham (transplant doc) would like to have Riley bulk up a bit before we try to do another harvest. So that means another NG tube at night. She is also getting an oral multi-vitamin which she seems to be doing okay with. Hopefully today we will find out when we will start radiation. 
    Other than all of that things have been great. Riley looks great and is happy as can be. I'll update later today after we find out more. 

  • SATURDAY, FEBRUARY 27, 2010 5:12 PM, MST
    I don't want to jinx our luck right now by saying where we are so I won't but I am sure you can guess where we are. Riley is doing awesome and continues to be in great spirits. Things seem to be on the up and up. Only one more round of chemo to go and then transplant. Radiation will be squeezed in here sometime but not sure when. Everything else is great with Ryan & I. We are just keeping our fingers crossed that we stay where we are. 

  • THURSDAY, FEBRUARY 25, 2010 6:52 PM, MST
    Today was a long day. We met with Dr. McBride who is the radiation oncologist. We discussed our options for radiation and now we are just waiting to see when the best time to start radiation. Radiation increases Riley's chance of survival significantly so to us it is the best option for Riley. After meeting with Dr. McBride we had an appointment with Dr. Bristol to check Riley's incision. Everything looks great so we shouldn't have to see Dr. Bristol again unless Riley starts to have any problems. We have been so lucky to have Dr. Bristol taking care of us. She and her assistant Liana have been absolutely wonderful and have treated us like we were family. We are truly greatful for everything that they have done for us and we will be forever in their debt. Well I must sign off, Riley is having a very emotional night. Until tomorrow... 

  • THURSDAY, FEBRUARY 25, 2010 9:30 AM, MST
    So sorry for not posting. Riley was released on Tuesday. Today we are meeting with the radiation oncoligist to discuss our options. We will post later what was decided. Riley has been great so not to worry. 

  • SUNDAY, FEBRUARY 21, 2010 7:23 PM, MST
    Today Ryan had to leave for California. Riley has been doing great today. She has been happy and alert. Her appetite has come back but we are still working on keeping it down. Right now we are waiting for her levels to come down so that we can go home. Dr. Goyal is wanting to give her a byproduct that will boost her antibodies as soon as her chemo clears. Hopefully this will keep us home longer.
    We are seeing a significant change in Riley. She is more like her old self. The shunt seems to be working. It is a slow process but at least there is improvement. Some time this week we will meet with Dr. McBride who is the radiation oncologist to see how or when we will proceed with radiation. Going to keep this one short but will update as soon as Riley's levels go down. 

  • SATURDAY, FEBRUARY 20, 2010 10:20 AM, MST
    This morning as we gaze out our window onto the wet parking lot, Riley is full of excitement and cheer as she prepares for a fun filled day of indoor activities. We will begin with the Cardon 12+ laps on the floor in her  blue racer. At 1pm we will attend the world premier of the Goats Gruff on the third floor. It will be presented by the children's theater. Riley got very excited by the thought of goats and began to bahhh excitedly. Last night both Big and Little Binkies provided Riley's entertainment while Jen and I ran our errands. Oddly enough ,when we returned we had six new binkies for Riley's chewing pleasure.

    As each day passes with this round we see a different response from Riley. The previous rounds were somewhat predictable but this round (and we imagine the next) has been somewhat unpredictable. This will keep us on our toes in anticipation as to what's to come. As long as Riley continues to be happy and she finds new ways to cope with it all, we should be able to keep pace. 


  • THURSDAY, FEBRUARY 18, 2010 9:49 AM, MST
    Good morning,

    Today is a thousand times better than yesterday. When Riley woke up or should I say when she finally went to bed, she became nauseous from the first chemo drug. That nausea lasted all night and well into the evening. Riley fought the dry heaves until about 7:00 am when she ate some food which didn't stay down long. Eventually though I was able to get her to keep some food down. 

    I was Riley's backstop for every body function and or fluid that she could throw my way. I suppose the up side is that we have yet to have any dirty clothes.  The down side is that  we have taken over the washer and dryer so everyone else is wearing dirty clothes. All kidding aside, thanks mom for teaching me to do laundry.

    We were given relief by both Binkies in the early afternoon which allowed (forced) me to take a nap. When I woke up about an hour later all four of us had puddles of drool to clean.

    The evening was spent trying to get Riley to eat as Jen and I enjoyed sandwiches from a New York style deli. I have been craving a hot pastrami sandwich with mustard, extra pickles, hot chili peppers and a side of fried zucchini for months. The trouble is, in the five years we have been here, I can not find a good ol' fashion mom&pop burger joint. Any suggestions? Anyways, the food was good but expensive and we will be having left overs for dinner tonight.

    Today Riley woke up after yet again another long night. She woke up hungry though. We sat down and she ate a good breakfast of blueberry muffin and strawberry yogurt. She even polished off a can of PediaSure with Carnation Instant Breakfast. The cocktails of nausea meds has kept her in great spirits and like her mother, chatty cathy!

    We hope the rest of the week goes as well as this morning has gone.


  • TUESDAY, FEBRUARY 16, 2010 7:18 PM, MST
    As we begin round four of chemo a day earlier than planed we look forward to the end. In baseball we are just leaving 2nd base to steal 3rd. In fact we are half way to third and caught in a pickle. Our pickle is whether or not we use radiation on any remaining tumor. That answer should become crystal clear in the next couple of weeks. 

    I must say this has been one heck of a long game and our seventh inning stretch was only a couple days at home. However, those days were filled with smiles and laughter from Riley. Granddaddy Jim took her on several walks and she played from sun up to sundown. All in all, she has been in extremely high spirits and has remained throughout today. With the assistance of  Big and Little Binkies we got Riley in the hospital and situated with our "Luggage" (actually an assortment of bags that seem to grow as the week ensues)

    Now we are patiently awaiting for chemo to start or zero hour. Unfortunately, waiting is what we have become used to. As always we will keep everyone abreast of the day to day events as they unfold. Thanks again for all the support that each and everyone of you have so graciously given. This obstacle would be much more difficult without it.


  • SUNDAY, FEBRUARY 14, 2010 12:31 PM, MST
    We are ecstatic to say that we are writing this update from home. That's right we made it out of St. Joe's yesterday afternoon. As you can imagine we are more than thrilled to home after our month plus long stay in the hospitals.

    When we arrived home yesterday the cleaning crew (Grandma Lisa and Great Grandma Judy) was hard at work. It is truly amazing how cluttered and dusty the house can become when you are never home or only for a day or two. Grandaddy Jim was busy cooking 40 pounds of chicken wings. The wings were for Jen's birthday party which was the day Riley was diagnosed. Now we have food to take to the hospital. Thanks for all the hard work. You were able to make the house feel like a home and not a pit stop!

    Last night we had some visitors for dinner. Aunt Katherine prepared a small mexican feast. While cooking Riley was surprised by Big and Little Binkies and Aunt Tina and Uncle Steve along with Cousin Lauren and Cara. Everyone brought Riley Valentines gifts which she opened with curiosity and enthusiasm.

    Riley was a bit groggy for most of the day and perked up in the evening. She also had a spot where she continued to bleed from. This morning she got a bath and it suddenly quit bleeding. Today she has continued to gather steam and play more and more. We are happy to say the operation was successful and during the MRI Jen say a noticeable difference in the amount of Hydrocephalus (Fluid) on the outside of her brain. She has not vomited or patted her head since. Riley's appetite is also growing again.

    I rode in the MRI tube with Riley During the MRI. She kept it toghther and toughed it out. She wasn't sedated for it and it only lasted about 5 minutes. When it was all over I told her we were almost done. Riley started to say, "All done, All done" she even tried to clap. To say she stole the hearts of the Nurses and Technicians is an understatement. 

    We plan to enjoy the next few days at home playing and napping. We should be back in the hospital for round 4 of chemo on Wednesday. Until then, Thanks for reading.


  • FRIDAY, FEBRUARY 12, 2010 3:52 PM, MST
    Today was the day from hell. We were told to arrive at the hospital at 6:30 am. After checking in we went to pre op where we were told that since we were early that we would have to wait for all of the other kids that were scheduled for surgery earlier to be taken care of. We tried to explain that Riley needed to have labs done to make sure we could go ahead with surgery. Well needless to say we had to wait. After the labs were done we found out that Riley's clotting factor was too low so she needed plasma. A couple hours later she had her labs done again and them again because the first ones clotted. Her surgery didn't start until 2 pm. We just spoke with Dr. Bristol and everything is great. We should only have to stay overnight too. Woo hoo! We are waiting to see Riley right now. The poor thing hasn't had anything to eat or drink since 8:30 pm yesterday. Hopefully She'll wake up wanting to eat a cow. 

  • FRIDAY, FEBRUARY 12, 2010 6:31 AM, MST
    Well we were released from the hospital on Wednesday. Riley's counts rose enough to free her for a couple days. Right now we are sitting at St. Joseph's waiting to be checked in for surgery. Her shunt surgery is scheduled to begin at 9 am. We will have to stay here at least over night. We will update as the changes come. 

  • TUESDAY, FEBRUARY 9, 2010 4:10 PM, MST
    Groundhog day continues. Only one exception, Riley's counts are beginning to creep up. Yesterday they were at 50 then today she is at 60. If Riley's counts continue to climb then the shunt surgery should be on schedule. Today her friend Tatumn was discharged from her chemo but Riley was unable to go out and play. When Tatumn and her parents left they stopped by and said bye from the doorway. Unfortunately, both kids were in a bit of a mood and it was short lived. Hopefully next time they will be able to play together. 

    These past couple of weeks have been full of visits from her grandparents and the usual rotation of nurses tripping over themselves to help her (Thank You). Last week Riley received a package from her Aunt Nancy. Riley was excited to see Ming Ming, Turtle Tuck and Lenny starring up at her. That brings me to today. Riley and I have played catch up on the Wonder Pet DVDs. She wants to hold all of them while she sits on my lap. It's like having an extreme football fan in the room minus the war paint and beer. Whatever make her happy! 

    This morning both Big and Little Binkies came for a visit and relieved me so I could go home and check on the house. So far, all is well. It is a strange feeling to go home but one that we look forward to.

    Until tomorrow,

  • SUNDAY, FEBRUARY 7, 2010 8:25 AM, MST
    Well we're still in the hospital. It seems that Riley is starting to like it here. Everything is still the fevers and no counts. We are waiting for today's but I would be extremely shocked if they go up. The doctor finally decided to double her dose of Neupogen so I am keeping my fingers crossed that it works. Riley is looking awesome and is finding more of an appetite every day. We are hoping that her counts go up enough to have surgery on Friday. Nothing else exciting to report so I will say good bye for now. 

  • FRIDAY, FEBRUARY 5, 2010 2:55 PM, MST
    Well we're still in the hospital. Her counts are still at zero. The doctors have taken her off two of the three antibiotics. She looks wonderful and is in great spirits. She is eating better as well and still drinking her PediSure. 
    Her shunt surgery has been moved to February 12th and her fourth round of chemo will start after she has recovered. Ryan is right about each day being the same but I do love getting to spend so much cuddle time with her. Hopefully tomorrow will bring some counts so that we can get back home. Until then...

  • TUESDAY, FEBRUARY 2, 2010 10:16 PM, MST
    Hey all,

    We are still in the hospital. Riley appears to be getting better day by day. Her color has returned and her eyes don't look so sunken in. It turns out that a staph infection is what brought us back. Her fevers have subsided and the nausea is somewhat controlled. The last test showed no sign of residual infection but her white counts are still non existent. With any luck her counts will rise tonight so she can have the pressure in her head relieved on Friday. 

    Everyday of this trip has been like "Groundhog Day". It seems like each new day is a carbon copy of the previous. Riley wakes up groggy and wants to sip on her PediaSure. She sits in our laps for a few hours and catches up on cartoons. Eventually, she will fall asleep and wake up hours later. We attempt to get food into her but she only drinks the PediaSure. By evening she has a bit more energy and wants to play with her dolls or Wonder Pets. By night time she dreads the Neupogen shot and is quickly back to sleep. 

    I can only hope that when tomorrow comes, we have broken the cycle and her counts are up, even a little.

    Until the alarm in the morning, Good night


  • MONDAY, FEBRUARY 1, 2010 12:05 PM, MST
    We are still in the hospital. Riley is in pretty good spirits considering. She is on three different antibiotics but her fever seems to be gone. We are hoping that we will be able to go home soon. Her counts are still at zero but when they go up they go up fast. Keep your fingers crossed. 
    Thursday we meet with the radiation oncologist to discuss treatment options. Ryan and I just want to rid this monster from Riley. We are still scheduled for her surgery on Friday as long as her counts are good. 

    Thank you for all of your continued support and prayers.

  • SATURDAY, JANUARY 30, 2010 9:29 AM, MST
    Like clockwork we are back in the hospital. Riley's temperature spiked so we packed our bags and we're off. Good news though...her temperature has come down from 103.3 to 100.7. We are keeping our fingers crossed that they do not find any bacteria in her blood. With that being said we are doing our best to keep her comfortable and happy this week. Riley will be having several visitors today...Grandma Lisa and Granddaddy Jim, Papa Richard and Uncle Ron are on the way to spend the weekend with Riley. 

    Riley's blood test just came in and showed an infection in the blood stream. Fortunately, her fever is down and she is returning to herself. We will be here for the next several days until they kill the infection. 

    Enjoy your weekend

  • THURSDAY, JANUARY 28, 2010 12:28 PM, MST
    The good news is that we are still at home. The bad news is that Riley is still vomiting. Despite the vomiting she continues to fight through it and eat when she can. We are doing the best we can to keep her hydrated. I was able to find some Pedialyte Popsicles but she has no interest in them yet. She looks good and is playful in spurts. She had Big and Little Binkies over yesterday. They were able to catch up and play. Today Riley's other Great Grandma Judy (working on a nick name for her) came over to lend a hand. Judy and Riley played with all sorts of toys and read books. As I type, Riley is taking a nap on her chest. Judy will see what a heater Riley is. We will continue the medications in an attempt to keep the vomiting down and take it day by day until the 5th. 

    Sorry it is short but time is of the essence to catch up on the house.


  • TUESDAY, JANUARY 26, 2010 9:19 PM, MST
    We're home!! Riley has had a long day. She has been battling some nausea and vomiting but all in all she is getting through each day. We just have to keep her comfortable until next week. We are praying that the shunt will solve all of the vomiting. It is hard to keep Riley happy when she doesn't understand why this happening to her but I know that she knows that we are giving her the best care that we can. Until tomorrow... 

  • TUESDAY, JANUARY 26, 2010 9:05 AM, MST
    Good morning all,

    We thought that yesterday would have been our last day at the hospital so we made an appointment with Dr. Bristol. While preparing for our outing we were informed that we needed to return to Cardon's to continue fluids because Riley's methotreaxte level was .16 and not .10. 

    With our trip slip signed we were off. Our fresh air lasted about two hours as we took a trip to downtown Phoenix for the appointment.The appointment was refreshing. We were finally able to see Riley's last MRI scans. The scans showed only a little remaining tumor in the ventricle. The tumor appears to be responding to the chemo and by all appearances the blood flow may have been cut off from the surgery. The best part is that there is a clear difference in size from the post scan to the most recent. Unfortunately, there is still a lot of fluid between the brain and the skull. It is believed the fluid against her brain is making her vomit. The only clear option is to place a shunt along the side of her head to regulate the pressure. If the shunt works then they will leave it in. If not then we are back to the drawing board. We are scheduled for the quick surgery on Friday the 5th of February if Riley's counts look good. With that in mind it will be a long couple of weeks trying to ward off the nausea.

    When we returned from our field trip Riley was hooked back up to the IV pump and they pushed fluids as quickly as possible. Unfortunately, it was not enough and we are still here.

    Perhaps today will be the day of freedom!


  • MONDAY, JANUARY 25, 2010 9:45 AM, MST
    Well today is the day...FREEDOM!! Just a quick update. Riley is still vomiting so we have an appointment with Dr. Bristol this afternoon to try to figure out what is causing all of this. Riley is still fighting the good fight though. Hopefully we will be able to curb this vomiting issue and get through these next two rounds with minimal sickness. It is still up in the air as to when we will return to may be between these next rounds or at the very end of round 5. 
    Ryan & I want to thank everyone for your continued support through all of this. We look forward to all of the emails, guestbook entries and all of the other wonderful ways that your support is being offered. We know that we couldn't have done it without everyone. Thank you, thank you, thank you.
    We will post later today about our appointment.

  • SUNDAY, JANUARY 24, 2010 9:05 PM, MST
    Today was like the rest of the week except, when Riley woke up it was to Grandma Lisa. This was a pleasant surprise for her and a chance for Jen and I to sleep in our own bed. All the nurses asked how our night went. I just told them, "our night was spent like any married couple as soon as we got home we went to bed. We were both asleep in minutes". Thanks for the break mom!

    Her day was filled with naps, visitors, car rides and tantrums. All in all a good day. The color has returned to her face and she has fought off the nausea for the most part of the day. Like her mother Riley has acquired a love for the automobile. As we watched the Barret Jackson Auction on T.V. we both pointed and said, "That".

    This evening we wind down Riley's third round of chemo. Her labs were drawn at 6:00pm and we awaited the results....We have to stay the night but we will be going home in the morning.

    This round was her hardest round yet. Like a champ Riley fought through it. I would have been wrapped around the bowl crying and asking for Mama! I really don't know what make this kid tick but nothing seems to get her down. We do know that without the support from all of you and the hospital staff we would be in rough shape. Tomorrow we start another busy week of doctors appointmets and trying to keep Riley healthy. With any luck we can keep Riley home for the next couple of weeks.

    Tomorrow we plan on writing this from the comfort of our own home, Riley playing with her toys, Jen on Facebook and myself typing away as the dogs lick my toes.


  • SATURDAY, JANUARY 23, 2010 1:33 PM, MST
    This morning Riley woke ready to go!  Jen quickly took her for a couple of laps around the floor while I straightened up a bit. For some reason Riley lost interest and wanted to return to the room.

    While Jen got ready to face the day Grandma Lisa came in the room. Lisa brought her the movie Cloudy With A Chance Of Meatballs which also came with an umbrella. We opened the box and Riley got to play with her first umbrella. She was really fascinated with spinning it  and watching the characters  go round and round. 

    Yesterday, Riley slept pretty much all day. As oon as she saw the chair she would say down or point to the chair. Almost immediately upon sitting her eyes would close and she would be asleep. Fortunately, she has been able to fight off the vomiting these past few days. If all goes well we should be back home by Monday afternoon. 

    Grandma Lisa is going to stay the night and allow Jen and I some time away from here. Maybe, I will have her update tomorrows entry.

    So long for now.

  • FRIDAY, JANUARY 22, 2010 11:30 AM, MST
    Good morning,

    We are still experiencing difficulty accessing the Internet from our computer. 

    Yesterday, Riley woke up a little green but with was able to keep it down. After her morning medication, Riley and I went out for a stroll. Riley in her car and I still in my slippers.
    As we rounded the corner and neared the playroom we were met by volunteers from the Children's Cancer Network. They were setting up for a fashion show for all the children who wanted to participate. At first, Riley was a little shy (like her mother). So it was off to the races. While we made our laps around the floor Riley began to warm up to the idea of going into the playroom to make something for the show. As we entered the room Riley was the center of attention as she donned a light blue hat and played coy. She saw a little girl whom she had met in the halls named Tatumn. Tatumn was also decorating items for the show. Riley and Tatumn played together for awhile.

    Big Binky braved the elements and nut-so drivers to play dress up with Riley. I promised I wouldn't put the picture on the net (he was dressed in a lavender boa while holding Riley). I always knew he was a ladies man.

    Around 2:00pm we gathered her decorated hat, boa and lace gloves to walk the runway. When we got down there they had the stage set and a photographer ready. The audience filled up quickly but Riley was getting tired again so we left early. Even though she didn't walk the runway she stole the show. Leaving was kind of difficult to do. They had a microphone ready and I had a captive audience. No really, I tried my best not to be a stage dad...She has a long time before college!

    The rest of her day was spent with Big and Little Binkies. Riley napped on Little Binky until she couldn't feel her lower half. Jen and I were persuaded to go for a free massage at the hospital. Sleeping on the blow up mattress is better than not but they didn't design the bed area for those of my stature (I know what you are thinking...Tall).

    Riley was asleep when her neighbor and hall buddy was released from the hospital. I showed her mom the caringbridge web site and she created one too (tatumncarr). I know that they will see each other again soon.

    Today Riley slept in until about 9:30 or so. We got her into a new pair of pajamas and went to wish a fellow cancer kid good luck as he ended his hospitalized treatment. Because America runs on Dunkin and especially Ryan and Jen we enjoyed a cup while Riley nibbled on a doughnut.

    We will see what crazy adventures today will bring. Her mood is excelent and she is as happy as ever! 

    Until next time,

  • WEDNESDAY, JANUARY 20, 2010 9:12 PM, MST

    The past couple of days have been much of the same as last week. We spent most of the time  trying to fight the nausea. On Tuesday while on the way to the doctors office she threw up her breakfast. While there we had blood drawn for a genetic test t be performed. This is actually part of  study that looks specifically at AT/RT patients.

    We were admitted and Riley began round three of chemo. As usual she had to make her rounds on the floor to say hello and let everyne know she was back.

    This morning started off great because she was up and down all night. I get my best sleep between 5am and whenever I wake up. I got up at 8:30 feeling like a champ. I was able to shower and get my war paint on before she woke up at about 9:30.

    The great morning ended rather quickly with Riley vomiting early. Amanda (nurse) helped to clean the mess up and with teamwork we gave her a sponge bath.

    When I returned from the laundry room Riley threw up again and again. Not that I wasn't good at laundry but I have become somewhat an expert on the matter.

    Around 11:00am Big Binky came to visit. Riley lit up like a Christmas tree when she saw Big Binky. She was so excited to see him that she almost missed the big ballon and rotating fish tank that he brought. Riley and Big Binky spent the rest of the day together catching up while I was able to get some errands completed. 

    When I returned to the room, Big Binky's side kick Little Binky was here to lend a hand. Those two have "Teamwork" down to a science.             

    Riley retired around 8:00pm. Hopefully tomorrow will be a better day!

    I almost forgot...the benefit dinner that was going to be on Super Bowl Sunday has been postponed. I will inform all when we get a new date.

  • WEDNESDAY, JANUARY 20, 2010 11:57 AM, MST
    We are experiencing internet trouble and are currently unable to provide a complete update. We will update when possible. Thanks for checking... 

  • MONDAY, JANUARY 18, 2010 7:31 PM, MST
    As we update the world, not much was accomplished over the extended weekend. However, I did get some new material for the stories.

    On Friday we meet Grandaddy Jim who was hard at work. Jim took Riley on the grand tour of the fire station. While playing on the various trucks, they got an emergent call. The call was for a plane that had lost an engine and was flying on one. As the guys readied their gear and jumped onto the engines, Riley sat on my knee waiving as the Calvary raced to the scene. 

    Once the crew approached the runway (about 1/8 mile form the station) they made a left turn and  headed East out of sight. About three minutes later we could hear the rumble of an engine hard at work. Seconds later a airplane tug came racing into view (3-5 mph). Riley's ears picked up the sound and as it came into view she began to anxiously wave and say Bye Bye.

    Moments later the plane touched down and the calvary was on the move. As they made it to the other end of the runway we again heard the rumble of the tug going full speed (3-5mph) as it chased the plane. Riley jumped down and again waived and said Bye Bye as it passed.

    We wish you all could have been this moment Jen and I both looked at each other as the Wonder Pets song came into our minds. It would be best if you sung this part...The plane, the plane is landing, I'm the tug and I'll to save the day! I guess you would have to have been there to fully appreciate it.

    Anyway, the weekend was one of patience and flexibility. It seemed that each time we hatched out a plan it would change by the hour. Yes, it is an exact science but most of it depended upon Riley's body to cooperate. 

    After numerous trips to and fro, of course all hours of the day and night we came to the conclusion that Riley's body was not going to cooperate. Dr. Graham tried numerous times to bring her levels up so that they could harvest enough stem cells.

    After the first harvest attempt Riley was given a new medicine at 8pm. We returned the following morning to begin the harvest. As we walked back to the clinic Riley threw up all over me. I held it together as we made it to the clinic. 

    Needless to say, I was covered with Riley's breakfast and in need of a new shirt and Jill came to the rescue. As Jill scoured the hospital for a scrub top for me we focused on getting Riley feeling better. More blood samples were taken and nausea medication was given. Slowly the color returned back to her and Jill walked into the room with what I would call my new favorite color. As I put on the scrub top and bagged up my shirt Jill began to remind us of how difficult hospitals can be. 

    Long story short, as Jill was given the run around she just took them and returned to the clinic. During her story, the nursing director called and wanted to arrange the delivery of a top for me. Jill expressed her disappointment to her and quickly hung up the phone. If it weren't for Dr. Graham and his staff I imagine that our stay at UMC could have very uncomfortable. Not to say that we have been spoiled during the Children's Hospital Tour 09-10 but UMC is very busy and mostly for adults.

    Due to the fact that Tucson became the soccer capital of the state for the weekend we were in need of a room for the rest of our stay. It turned out that Uncle Ronnie and Debbie lived a short distance from the hospital and had extra room for us. This was a huge blessing. Since we were delayed in our prompt return home, their washer and dryer came in handy. 

    Riley got to meet her cousins and their children. As Riley and the kids played I tried to catch up with the Ronnie and the girls (Damn time flies)! Their beautiful home was like a wildlife zoo. Riley spent hours looking out the windows trying to find deer, javelina and birds. It was also nice to see her play with children her age. Her enthusiasm is equal to that of other kids. 

    This morning was the last attempt of harvest. As we backed out the driveway Riley got sick. We quickly cleaned it up and started over. When we arrived at the hospital Riley had more blood tests taken. While we waited Riley received a unit of blood. When her results returned her Stem cell count was about 10% higher than Saturdays but not near enough.

    As the doctor prepared for the catheter removal we focused on feeding Riley. She ate really well and kept it down. It soon became time to remove the catheter. Dr. Graham started slowly with the sedation drugs but quickly learned of Riley's stubborness (just like her mother). Eventually, the doc got the combination just right and they removed the tube in no time. As usual, Riley came to asking for her dogs (Jake and Laney). 

    We stayed for another half hour and met Uncle Curtis for lunch. Curtis took us to one of his local hang outs across from the hospital where Riley ate a generous slice of pizza. 

    That's it in a nutshell, I wish that I had more for all of you but the weekend was so hectic that updating became tough and it was a lot of waiting around. We have to return to the hospital in the morning for round Three of chemo which means we will be there for about a week or so. We will update as we can. 

    Good night,


  • SUNDAY, JANUARY 17, 2010 2:27 PM, MST
    Hello outside world. We are still in Tucson with Riley. She has had two stem cell harvests but they have not been able to collect enough. We will give it one more try tomorrow. Other than that Riley has been doing ok. We are staying with Ryan's Uncle Ronnie & his wife Debbie. They have been absolutely wonderful. Well I have to keep this short since I'm typing on my cell phone. My fingers are already cramping. Until tomorrow. 

  • THURSDAY, JANUARY 14, 2010 6:16 PM, MST
    Here Ye! Here Ye! Read all about it...

    We made our way to the hospital this morning and into the surgery prep area, before Riley really woke up. Her vitals were taken without a struggle and we were introduced to the surgery team. We signed the usual permission slips and Riley was taken into surgery.

    Jen and I returned to the waiting room where we met Grandma Lisa and Granddady Jim. Meanwhile, her usual support team (everyone) waited for the good word. About forty minutes passed and the double doors opened, Dr. Stafford exited and informed us that everything was completed and we could see here shortly. 

    We waited for about ten more minutes and Riley was in Jen's arm when she finished waking up. We waited for a couple more sets of vitals and awaited the arrival of Jill (Dr. Graham's bone marrow transplant coordinator).

    Jill expediently transferred us up to the Red Cross office on the second floor. Jen and Riley got comfortable on the bed while the nurses triple checked all the paperwork for the procedure. 

    Shortly after, Jill returned to check on us and I went on a hunt for chicken fingers. Unfortunately, the cafeteria was prepping for lunch and I was unsuccessful in my mission. When I returned  empty handed Jill jumped into action. She promptly picked up the phone and was given the run around. Like a New Yorker, she was into someones ass in seconds flat. The next thing we knew Jill returned with a tray containing chicken fingers and fries for the princess (we later learned Jill is from Boston, so I was close).

    As Riley stuffed hand-fulls of food into her cute little face, Grandaddy Jim helped coax some fluid in between bites. Thanks Jim, you would make a great ringside water man for the UFC! Keep our prized fighter hydrated!

    Riley and Jen drifted off to a peaceful slumber while the rest of us went to lunch. When we returned, I fed Jen lunch in bed. By the way, Jen can eat fast, of course I kept a speedy tempo. Yes, I allowed her to swallow but not too long. I just printed up her entry form for competitive eating.

    The harvest took several hours and we ended up back in Dr. Graham's clinic where we anxiously awaited the collection count. Unfortunately, they weren't able to get enough and we are scheduled for another try on Saturday.

    We got Riley back to the room and we all took a nap.

    We will spend the next few days in Tucson. Perhaps, we'll end up at the Children's museum or the zoo. There is a slight possibility we can met Granddady Jim at work and Riley can play on the firetruck. 

    Good night  

  • WEDNESDAY, JANUARY 13, 2010 6:34 PM, MST
    This morning was a little hectic getting our bags unpacked and then repacked for our trip to Tucson. One would imagine that as much as I travel I would be able to unpack then repack in a matter of minutes but it becomes laborious when you have to pack a little one and not forget the wife.

    Our trip down south was uneventful and we met with Dr Graham where the staff ran some tests to check Riley's levels. Riley finally got to meet her Great Uncle Ronnie while we were there. 

    Once the test results came back we verified the plan for tomorrows events and quickly left the hospital. One thing is for sure, UMC is like a sidewalk in China. There was a line for the elevator almost to the door and there is no such thing as personal space while navigating through the lobby.

    We milled around Tucson while our hotel room was prepared. As we made our way through the desert landscape we both noticed that the traffic here compares to California gridlock. 

    We took a glimpse into our distant future... like a couple in the golden years we had a early dinner (4:00 pm) and made our way back to the hotel. Riley began to run circles in the room so we took her for a walk down the river-walk where she nibbled on powdered doughnuts.

    Our evening will wind down with Riley playing with the toys we brought with us. Yes, as I write this, the floor is beginning to look like a sprinkles on ice cream. Which reminds me of my friends website ( if you want to protest the less than ample use of sprinkles in ice cream stores.

    Until tomorrow...

  • TUESDAY, JANUARY 12, 2010 7:36 PM, MST
    This morning began with Riley getting in touch with her grumpy side. At first, I thought she may have awoken on the wrong side of the bed but come to think of it, she may just have been turned around. Her attitude lasted for the better part of the morning and tapered off around noon when she fell asleep. 

    Now to get to the info you are all waiting for. After several phone calls and a couple changes we finally came up with a plan. 

    We were discharged from Cardon's this evening around 4:30 where once again, Riley left in true fashion. When the doors opened a look of relief came over her face. We got her strapped into her seat and it was off to the races of rush hour traffic going east. 

    We got home and had dinner. Jen took Riley up for a bath where she played in the tub until she looked like a wrinkly little old man. After her bath they came downstairs where she played with her toys and tried on her new hats.

    Tomorrow we need to be in Tucson by noon so Riley can have a test run to insure she is ready for the harvest. We then get to stay in Tucson for the night. If all is well with the test, we return to UMC at 8:30 am Thursday. Riley will have a quick surgery where they will place a catheter in her leg for the harvest. She gets to rest for awhile then the harvest begins. We anticipate it will take several hours but as things usually go, we won't count on it. This entire procedure should be out-patient. Depending on the time and of course how she is doing we may get to go back home on Thursday.

    On Monday, we meet with Dr. Bristol to discuss the opinions of the Tumor Board. Then on Tuesday Riley should be readmitted for round three of chemo. All of the above rests entirely on Riley's counts and if her body is ready for the procedures.

    One thing is for sure...we all are looking forward to sleeping in our own beds tonight. Good night.

  • MONDAY, JANUARY 11, 2010 6:20 PM, MST
    Well we have finally heard the results of the new masses were found. The extra fluid isn't causing the doctors too much concern and no drain placement is scheduled. The doctors are going to continue to measure her head every day to make sure that the extra fluid doesn't cause any swelling. We will visit Dr. Bristol next week after we return from Tucson. We are still scheduled to head down that way on Wednesday. We will probably be there until Friday as long as the doctors are able to harvest enough stem cells.
    Riley has been pretty active today. She is more like herself. She started to eat a little and is drinking more. Her Uncle Curtis was able to spend a few hours with us today which was a wonderful gift. We don't get to see him very often and we treasure any time that we get with him. 
    I know this entry isn't as "colorful" as Ryan's but my imagination is pretty shot right now. Well I hope everyone has a wonderful evening.

  • SUNDAY, JANUARY 10, 2010 9:51 PM, MST
    This evening we received preliminary results of the MRI. First of all, the radiologist did not find any obvious masses. With that in mind he did not have the original or subsequent one to compare to. The most important thing to remember is, this is only the unofficial result and will need further review by the doctors at Barrow. They will try to present her case at the tumor board in the morning. 

    The doctor said they noticed a large amount of fluid in her head. They feel it may be necessary to place a drain or a shunt to help her drain the excess fluid. However, keep in mind that the size of the tumor was large and took up a lot of space. Dr. Bristol told us that as her brain decompresses the fluid should dissipate. We will await her ruling on the scan before we make any decisions.

    All in all this was a good day for us. Riley continues to fight the fever which continues to spike up to 103 degrees. She has alot of support which helps us help her.

    When we left our room, Jen and Riley were wheeled to the MRI offices by what appeared to be a crazed race walker. No offense, her legs were shorter than mine and I almost broke into a trot just to keep up. I think she must have thought we were late for dinner because she broke the land speed record for mother and child in a wheelchair category. 

    All kidding aside, the staff here at Cardon's has been exceptional and compassionate. I just wish we could take them home.

    We will update all when we get more information.

    Good night,

  • SUNDAY, JANUARY 10, 2010 11:54 AM, MST
    Riley has been in MRI now for the last hour and a half. We will give an update when we have more information. Please keep your fingers crossed. 

  • SATURDAY, JANUARY 9, 2010 8:53 PM, MST
    Tonight as I write this small novel, I share some good news. Riley is doing much better today and is on schedule for the long awaited MRI. Also as of this afternoon we should still be in Tucson on Thursday.

    The MRI will be conducted here at Cardon's at 9:00am. She will be sedated so they can capture images of both her head and spine. 

    Like many of our loyal readers, we too anticipate the "all clear". The likely hood of knowing the outcome tomorrow is probably slim to none. We heard they will have to send the results to St. Joesph's for the final results. I trust that if there is anything obvious, we would be informed right away. In any event, we will post some result as soon as possible.

    With all of that out of the way, Riley has been fighting the fever all day. Although it has been a low grade fever, it has kept her lethargic all day. 

    She snapped out of it in the evening time when we had a video chat with Grandma Lisa and Grandma and Grandpa Townsend. Just as we wrapped up the call with my parents, Riley's Great Grandparents came in and she really perked up. Riley shot up off of Jen's leg and nearly leaped across the table for a hug from BIG BINKY. 

    Jen and I were relieved by BIG BINKY and his side kick, little binky (we are testing this name out), for a couple of hours. While we enjoyed a delicious dinner, Riley played and enjoyed some child appropriate television.

    That was our day in a nut shell. I tell you, it's a wonderful feeling to have her sleep on your chest (sweaty but wonderful).

    Good night from the 7th floor.

  • FRIDAY, JANUARY 8, 2010 10:05 PM, MST
    For those of you who are doing a little late night light reading here is the latest.

    After Riley napped the day away, we find ourselves packing our bags for a trip to the hospital. She was admitted with a 101 fever. 

    We were able to enjoy most of the day. Jen and Aunt Kathryn took Riley to the mailbox where she picked me an orange. Then Riley and I watched a few hunting and fishing shows. 

    I can't wait to teach here all I know about hunting and fishing (which isn't a lot). I just know that one day she will correct me out in the field. I try to ensure she gets a variety of outdoor shows (I get plenty of hers. I even find myself humming some of the tunes). I find her in my North American Hunter magazines. Oddly enough, when she is done with my magazines, so am I.

    Anyway, as I made ourselves at home, Jen took Riley into the treatment room to be accessed and for labs. 

    For now, we hurry up and wait. We believe her MRI will still be done but here at Cardons. We will keep you posted.

    Good night from the hospital.

  • FRIDAY, JANUARY 8, 2010 2:27 PM, MST
    Good morning, yesterday was a good day. Riley laughed and played till she wore herself out. It started off with "the shot". I was able to distract her while I pretended to check her diaper. I laid her on the couch and took a look. Yes, I got more than I was looking for but I was also able to pinch a bit of thigh and sneak the needle in. Riley got mad for a quick second but quickly forgot all about it. The rest of the day was spent running some errands and playing. Jen came home from work and took Riley and the dogs for a walk. 

    Today Riley woke up a little under the weather (which is gorgeous by the way). Unfortunately, not feeling well or not she still needs her Neupogen shot. 

    Jen is home today which made giving "the shot" easier. Jen distracted Riley while I snuck in for the poke. Riley cried for a minute but with mom's touch she was back at play. 

    After breakfast Jen and Riley got on the computer for a face to face visit with her Granddaddy Jim and then Grandma and Grandpa Townsend. Riley quickly wore herself out and took a long nap while Jen and I took down the Christmas lights. 

    I hope the rest of the day will be spent watching her play and enjoying a hunting show or two. Later, I would like to go for a bicycle ride or maybe take her for a ride in the toy. Who knows what we will do. As long as she is in a good mood and up to it, we will try to enjoy the weather.

    Most of you know that the caringbridge site will be down for maintenance over the weekend but we will update all with Sundays MRI. 

    Enjoy your weekend!

  • WEDNESDAY, JANUARY 6, 2010 3:42 PM, MST
    Well, this morning was much of the same. Today I started off with the Adavant and gave it time to work. After about half an hour, I tried to place the Emla cream on her port and wrap it up. That stayed on for about 5 minutes. I just decided that it wasn't worth wrestling with her on the counter because I still needed to give her the Neupogen shot. 

    I gave her a few minutes and tried to distract her with the new wristbands. If only Jen was home to help....Eventually, we got it done and she shook it off. 

    As we drove to the hospital, I stoped at Sonic for some french toast sticks and tatter tots (her favorite). However, she turned her nose to them.

    Upon our arrival at Cardons, she began to bounce in her seat like a ping pong ball. A brief struggle unbuckling her, then a bribe to ride my on shoulders, and we were in. Sometimes that walk from the parking lot inside the hospital can be a little frustrating. Almost like a kid throwing a fit in the cereal isle of the store. Just without the excitement. 

    The transfussion went well. Myself and the nursing staff distracted her enough to accomplish the task. You should see how Riley captures everyones heart. Nancy (nurse) took Riley on a parade to the toy box filled with Beanie Babies and then off to the Closet for another bribe.

    With a little help of freezy spray she was accessed and the transfusion began. Riley ate her french toast sticks and tatter tots then fell asleep on my chest. About two hours later we were all done. After a few hugs and kisses we were out of there.

     We walked outside to a gorgeous 75 degrees and a slight breeze. Riley took a deep breath and smiled (freedom never smelt so good).

    We drove to BIG BINKYS for a quick walk and to drop off new wristbands. He will resupply the donation box at DR. Kuhns' Chiropractic office. (THANK YOU!!!)

    The rest of the day will be spent at home trying to enjoy some peace and quiet.

    Thanks again everyone, for reading and encouraging us!

    Jen wants me to sign my name when I write these. Apparently, she dosen't want others to think she has my sense of humor.


  • TUESDAY, JANUARY 5, 2010 8:18 PM, MST
    This morning we got off to a rocky start. I had to get her ready for her Doctor visit. I had to put the Emla cream on her port and then wrap her up so she wouldn't wipe it off. This sounds like an easy task but, it was like wrestling with a slimy fish. Then the next part was to administer the first dose of Neupogen. I tried to distract her but she was well aware of what was going on. After a short struggle, I was successful in giving her a sore leg and a sore throat. In turn, Riley gave me a headache. I tried to give her Tylenol for her teeth and Adavant for nausea but most went onto her shirt. 

    I tell you all of this to say, I don't know how moms do it. My hat is off to all the moms out there who have dealt with a fussy child and a child battling cancer. I think tomorrow I will start with the Tylenol and Adavant (trial and error)

    Enough of the mornings struggles. We arrived at the hospital and Riley knew exactly where we were. She was walking towards the door and she stopped dead in her tracks. 

    The visit was rather quick but, we found out her hemoglobin counts were low. We finished there at the doctors office only to go next door for the type and count for a transfusion tomorrow at about 10:00am. 

    The rest of the day was spent at Grandma and Poppies house where BIG BINKY took her for a walk and tired her out. We are now resting at home and waiting for the day to end. Good night to everyone.

  • MONDAY, JANUARY 4, 2010 9:08 PM, MST
    Well today Riley completed her second round of chemo. Her levels came down faster this time and after receiving her last dose of the rescue drug Dr. Shah signed her parole papers. (kidding of course) Riley was so excited to leave the floor as we walked out she began to shout Bye to everyone at the top of her little lungs. With any luck we won't be back to see her favorite nurses for a couple of weeks.

    We have to go back to the clinic tomorrow to receive another shot of vincristine. If she can stay healthy on the 10th Riley goes to St. Joes for a MRI and we all go on our first field trip to Tucson for her stem cell harvest. 

    We will be very busy these next couple of weeks but we are another step closer to the end. Riley has had her moments but has been really strong which makes it a little easier. We appreciate all of your support and words of encouragement through this difficult time. 

  • SUNDAY, JANUARY 3, 2010 4:04 PM, MST
    Today has been a pretty good day. Her levels are still pretty high but they just drew some blood so we should know around 7pm if they are low enough for us to go home. She has been full of energy today so we are expecting her to sleep good tonight. She has again pulled out her access line so we are still trying to figure out how to keep her from it. If anyone has any ideas we would love to hear them. 
    We have got our webcam up and running. If anyone wants to join in on the fun we are using Skype. Just give us a heads up if you want to take a peek. Please keep your fingers crossed that Riley's levels have dropped enough to get us home.

  • FRIDAY, JANUARY 1, 2010 12:23 PM, MST
    The last few days have been pretty uneventful. Riley has been handling her chemo well with just a few bouts of vomiting. Grandma Lisa stayed with Riley last night so we could have a night to our selves but considering that it was New Year's Eve we were asleep by 9:30pm. Today is the last day of chemo drugs with tomorrow being a rescue drug. Hopefully she will pass the drug that she gets today quickly so that we can get home soon. Nothing really exciting to report...until tomorrow. 

  • WEDNESDAY, DECEMBER 30, 2009 9:25 AM, MST
    Yesterday, Riley was admitted for her second round of chemo. Her counts were outstanding. Her day was uneventful. She actually slept in the crib instead of on me! She woke up at 4am with a leaky diaper. After the nurses got her cleaned up she decided that we needed some more excitement so she pulled out her access line. At 4:30am we got to make a trip to the treatment room to get re-accessed. She was able to fall back asleep and she hasn't woke up since. Today should be some more chemo and nothing else. We are trying to stay on top of the nausea since Riley was eating like a champ yesterday but we won't know until it happens. Hopefully she'll at least keep drinking her Pedisure.
    Ryan and I have set up a webcam for Riley. I am still trying to work out a time schedule when I will have it up so please check back for it. I have set up an account on Skype using our email address at the right of this screen. 
    Ryan and I have been trying to give recognition to everyone who has made donations but I am sure we have forgotten someone along the way. To those people...thank you from the bottom of our hearts for all of your support. 
    Well Riley just woke up so I must go...

  • MONDAY, DECEMBER 28, 2009 9:14 PM, MST
    Well, we get one more night of peaceful sleep. Tomorrow we go to the hospital for round two of the chemo treatment. Riley had a fun Christmas with her cousin Madison not to mention the rest of the family who braved the holiday travel. We thank each and every one of you for making this Christmas fun and memorable.

    We would also like to thank San Tan Natural Medicine for allowing us to display a donation box in the office. Also, Skippys grill for setting up a benefit dinner for Riley on SUPER BOWL Sunday. We will be sure to keep you all posted and hope that most can attend.

    We will post new information tomorrow once we get settled in. 

    Again sorry for the delay in our post. As you could imagine, we have had our hands full the past few days enjoying every moment of Riley's excitement.  

  • FRIDAY, DECEMBER 25, 2009 1:33 PM, MST
    Merry Christmas!!! Hope everyone has a wonderful day full of love and happiness. 

  • WEDNESDAY, DECEMBER 23, 2009 10:36 PM, MST
    Today Riley spent the day at her great grand parents. BIG BINKY said Riley slept for about two hours. He believes that they must be boring but, I think he just wears her out. Each and everytime she comes over BIG BINKY lays out a blanket and litters it artfully with books and toys. By the end of the day Riley is so exhausted that she falls asleep as soon as she gets into her car seat. Thank you Bud and Jackie! We know that Riley is as excited to visit as you are to have her over.

    Tonight Riley got to open some presents from Bud and Jackie. As all grand parents do, she was showered with gifts which she actually opened with great enthusiasm. Well, she would open it slowly and peek into the package then tear a little more. It was very cute. 

    Her appetite continues to get bigger day by day and, she continues to be as happy and playful as can be. We look forward to tomorrow one day closer to Christmas and a visit from the Townsend clan. 

    AS always, thanks for reading about Rileys day. Enjoy the Christmas holidays with your families. 

  • TUESDAY, DECEMBER 22, 2009 6:50 PM, MST
    Today was another great day...nothing too exciting. Riley stayed at home with Ryan and I went to work. Grandma Lisa and Granddaddy Jim came to visit. Riley is still feeling great. She is still eating good so we haven't had to use the feeding tube. Right now we are watching Polar Express and loving every minute of it. On Thursday, Grandma and Grandpa Townsend, Aunt Dee and Jason are coming in from Las Vegas and on Friday The Wade's are coming from California. We are going to have a house full but it will be wonderful to be at home for Christmas and to see Riley play with her cousins... I can't wait. 
    Ryan & I want to send a big thank you to the girls and guys of Sierra Vista Public have all been very generous these last few weeks. It is greatly appreciated and will not be forgotten. Until tomorrow...

  • MONDAY, DECEMBER 21, 2009 5:26 PM, MST
    Is it really sorry for not writing. Riley is doing great. We've been very busy getting ready for Christmas. Riley has been helping with the wrapping and decorating. She is still eating and sleeping well. Riley had an appointment at the clinic today. Her counts are a little low but not too bad. Still have to be cautious with the germs...
    Ryan has been working hard on getting the bracelets out there. As long as he is busy and not bothering me...just kidding...not really...okay I am kidding. We wanted to say thank you to Skippy's and Toy Junkies for allowing us to have donation boxes at their businesses, to the Davis-Monthan Fire Department & the Palm's Hotel and Casino security team 
    for all of their support, and to all the family and friends who have given us so much support, generous donations, love and what Ryan likes to call "virtual hugs". Thank you, thank you, thank you!!!! 

  • FRIDAY, DECEMBER 18, 2009 11:03 AM, MST
    We're home!!!! Riley was let go yesterday around 11:30am. Ryan had the joy of taking her outside for the first time in a week (I was at work). She was very excited to be free. She must have been feeling good because when I got home the house looked like a toy store had blown up but the little angel was asleep on the couch so what can you do. She ate a little for dinner but not enough. We hooked her up to the feeding machine but that only lasted for about two hours. When we were putting her to bed she pulled the tube out. Oh long as she is drinking at least 2 cans of pedisure during the day we won't have to use the tube.
    So far today Riley has been doing wonderful. She got a bath and her antibiotic. Ryan and I are now trained to place a feeding tube and to administer her anitbiotic through her port. It is a weird feeling to push drugs into your child. 
    We just had a visit from Rebekah & Scott VanNierop. Their son Jonathan was also diagnosed with AT/RT. They are from Sierra Vista. We have been communicating by email and Facebook. It is so great to have someone else to talk to face to face that knows what we are going through. Please check out their site at for more information on their angel and how you can help. Thank you so much to everyone out there who is reading this and sending us their prayers. I look forward to reading the guestbook everyday. It makes me smile and sometimes cry but it still is one of my favorite things to do everyday.
    I will be adding more pictures soon so keep a look out. 

  • WEDNESDAY, DECEMBER 16, 2009 8:30 PM, MST
    Today was a great day...Riley was in good spirits. She woke up this morning after spending sometime in the crib which means that I was able to sleep in the "bed" last night. Oh what a difference laying on your back makes. She want to play and explore the floor again. Her counts were at 2070 so no more having to worry about who is around her or keeping her isolated.
    The feeding tube went okay. She kept it in until about 11:30 am. She only needs to have it during the night but it is much easier to keep it in then have to keep putting a new one down her nose to her belly every night. The nurse has showed Ryan and I how to place the tube and how to run the feeding pump. She will continue to need the tube feedings until she gains a little weight. We will keep them up at home starting tomorrow and hopefully we will be able to get her to drink Pedisure on her own so she won't need the tube. Ryan & I know that she will starting eating again on her own when we get home so we just keep holding on to that.
    Hopefully tomorrow goes smoothly and we will be home by noon. We still don't know if we will be back here on Monday but we are pretty sure that we will. Oh well, we'll just have to bring Christmas to Riley.

  • TUESDAY, DECEMBER 15, 2009 7:51 PM, MST
    So far so good with the feeding tube...she cried and cried for about 30 minutes and tried to pull it out but she finally calmed down. I know this is the best thing for her but she doesn't understand. She's sitting with her daddy watching cartoons so life isn't that bad right now. 

  • TUESDAY, DECEMBER 15, 2009 1:34 PM, MST
    Daddy stayed with Riley last night...I don't think he knew what he was in for. She had a pretty good day yesterday. She finally ate a little bit but not enough to really qualify as eating. She received her dose of chemo as well so we are just waiting for the nausea to kick in. Her ANC count is up...660!! (ANC is the count that needs to be up so she isn't neutropenic and she can fight off infection on her own.) If her counts stay up we may get to go home on Thursday. Today she is supposed to get a feeding tube in her nose. The last time she had one of those it wasn't pretty but that is the only way she'll get nutrition. I know it sounds bad but she is really doing great. She laughs, plays, talks and looks amazing.Thanks for reading.

  • SUNDAY, DECEMBER 13, 2009 7:59 PM, MST
    Last night went pretty good. They were able to find us a recliner so Riley and I were both able to get some sleep since she will only sleep on our chests. The doctor said that the bacteria in Riley's blood is E.coli. It probably came from her bowels. It is not uncommon for kids getting Riley's treatment to get infections since their immune system is nonexistent. We will probably be here at the hospital for another week or so.
    Riley is doing extremely well considering. She can't leave her room without wearing a mask and since she won't wear a mask we don't leave the room. That recliner has really become our best friend. 
    Riley has started to loose her hair. It will probably be all gone in the next couple days. Ryan and I have been considering shaving our heads so we can all look the same but I just don't think Ryan can pull off the bald look:) (Sorry, I have to keep my sense of humor going or I may loose my mind and we all know that wouldn't be a good thing).
    Riley has developed a liking for playing tea party with daddy. Our friends Shawn & Melissa came for a visit from CA. They brought Riley a tea set and she loves it. She feeds Ryan the little cakes and gives him tea. If her only knew that I was telling everyone this...oh well, that is what happens when you become a parent. All of our little secrets come out. 
    Until tomorrow everyone...

  • SATURDAY, DECEMBER 12, 2009 4:55 PM, MST
    Riley is doing great today. She had a rough night...she slept most of the day so she was up most of the night. The chair that is in our room is not that comfortable so I didn't have a peaceful night. Her blood counts are really low so she is getting a transfusion of platelets. Her temp has gone down for now but her temp still will go up once in awhile. Hopefully if her fever breaks and her counts are good we can go home in the next few days. We will probably be spending most of our time in the hospital but whatever is best for Riley will be what we do. 

  • FRIDAY, DECEMBER 11, 2009 6:43 PM, MST
    Well Riley is in the hospital. She slept peacefully last night but woke up not feeling good. She fell back asleep with me while Ryan made us breakfast. When we went downstairs I put her on the counter and gave her a drink. She was shaking pretty bad. We took her temp and it was 102.6 degrees. After a call to the doctor, we were sent to the ER and then admitted to the 7th floor, the Oncology floor. We have been told it could be anywhere between 48 hours and 14 days before we can go home. If it is the later we would start her second round. This is normal for kids going through her type of treatment. Most kids end up back in the hospital after their round of chemo and stay 7-14 days. In the end we will be calling Cardon Children's home for a long time. Our poor baby!! I can't imagine what she is feeling and we can't do anything to make it better. All we can do is stay strong and keep praying and loving her. Thank you to everyone for all of your prayers and well wishes. It helps us more than anyone might imagine. 

  • THURSDAY, DECEMBER 10, 2009 10:28 PM, MST
    Wednesday was an ok day. Riley fought off nausea for the entire day. During breakfast she drank some instant breakfast and pedialite. I cooked her up some pancakes but her tummy wasn't up to them. After breakfast, she got that about to vomit look, so I gave her a dose of medication. For the rest of the day she either played with her toys or slept on my chest. 

    Each time I would get up to attempt to take care of the house she would get mad. So I toughed it out, and became her bed for the day. I really don't mind though, I will remember these days forever.

    Today Riley woke up in a mood. We took her to the doctors for the weekly blood count. While there, we were informed that she was neutropenic (extremely susceptible to infection. Her counts should be around 1000 but were 90) 

    After our visit, we took Riley next door for a blood transfusion. The first part was the type and count. We were told it could take awhile for the blood to arrive so we took her home for a nap. Throughout the day Riley was very tired. 

    About thirty minutes into her nap we got the call. We grabbed Riley from her slumber, and drove her back to the hospital. Once there, I sat in a comfortable recliner and Riley had her port accessed. Like her Dad she didn't flinch. I sent Jen off to the store for some supplies and Riley fell asleep on my chest again. (I never thought I could be that comfortable). The transfusion took about 2.5 hours. When it was complete, Riley instantly perked up. Since she didn't really eat we took her for fries and chicken nuggets. I'm only guessing but, she ate faster than our dogs could.

    We got her home and she enjoyed the Wonder Pets while Jen and I cleaned house and made dinner. Riley wasn't that hungry but, her thirst has increased. That is good because she needs to flush her kidneys. We hope that she continues to stay healthy and only has these minor speed bumps before her next round of chemo.

  • TUESDAY, DECEMBER 8, 2009 8:25 PM, MST
    Riley slept in her own bed for the first time in what felt like an eternity. She woke up several times but fell back asleep quickly. 
    We sat down to breakfast where she ate a couple of cheerios. Shortly after, the home health nurse arrived and administered Rileys' dose of Nupogeun, which is a drug that helps boost Riley's white blood cell count. After her shot I gave her a bath to rid her of that hospital feeling. We played with her toys and Jake and Laney for most of the day and got ready for lunch. Lunch was only a couple bites of Kraft Mac & Cheese and nothing to drink.
    Grandma Jackie and Poppy Bud (Big Binky) came to play at about 1:30pm. Riley jumped into her car and Big Binky took her for a walk. They made several passes up and down the street. 
    Dinner was provided by the grandparents. While dinner was cooking Big Binky fed Riley dinner. She ate well, peaches and mac & cheese. 
    Unfortunately, while we finished up with dinner Riley threw up her dinner. Jen cleaned her up and I cleaned the carpets. (yes, I cleaned up the mess) 
    Hopefully, she will have a good nights rest and we can play all day tomorrow. 
    Please let us know if you have any questions regarding the donation site. I have heard it can be a little confusing. If you go to Wells Fargo just tell them Riley's name and her birth date (6/17/08) and they will make sure it goes to the right account. Thank you so much to all who have purchased bracelets, cooked us dinner and bought diapers. It is appreciated more than we can express.

  • MONDAY, DECEMBER 7, 2009 3:59 PM, MST
    For those who have been asking, we have set up a site for donations for Riley. The site is There you can donate by credit card or you can stop by any Wells Fargo branch to make a donation.

    We are finally home!!!! She's is happy to be here and has gotten right back into her routine. She's even eating and drinking on her own. What a relief home is.

  • MONDAY, DECEMBER 7, 2009 9:26 AM, MST
    We're still waiting to go home. Her methotrexate level is down!!! I guess I need to clarify what this all means (thanks dad)....when she is given the methotrexate it can do damage to her kidneys if it stays at too high. On Friday when they checked it was at 1.65. That is pretty low after 24 could have been up to 100. In order for us to be released the Dr. said it had to be below .18. This morning it came back at .04. My dad told me I kind of confused him when he read the first post...he was comparing it to blood alcohol level...this is different. I hope it all makes sense now. We will want this level to be low each time so we can be released. 
    For all of those on Facebook...Children's Brain Tumor Research Foundation is in need of our help. This foundation was started by a family of a beautiful little boy, Jonathan, who was diagnosed with AT/RT and sadly lost his fight. Chase Bank is giving away $$$ for the charities who receive the most votes. Please become a fan of Chase Community Giving and vote for Children's Brain Tumor Research Foundation. You get 20 votes so please use them all.
    We are waiting for the doctor to stop by to order her chemo for today then we get to go home. We'll update as soon as they let us go. 
    Thank you again to everyone for all of your prayers and support.

  • SUNDAY, DECEMBER 6, 2009 2:58 PM, MST
    Well we'll be spending one more night here...her methotrexate level is still not low enough to go home. Oh well. They'll check it in the morning and then she'll also get her next dose of chemo. That saves us a trip to the doctor's office. Today's been a better day though. She started eating again and has had a few sips of milk. She's being very sweet more hitting and screaming. 

  • SATURDAY, DECEMBER 5, 2009 7:19 AM, MST
    Yesterday was not a good day. Riley was in good spirits but didn't eat a thing. She wouldn't drink or even really take her binky. We tried some numbing mouthwash to see if that would help and it seemed to but she still wouldn't eat. 
    Ryan & I were able to have some alone time thanks to Great-Grandma Jackie & Big Binky. Needless to say all we needed was a nap.
    Last night was pretty good. They tested Riley's level of methotrexate (chemo drug from Thursday) to see were it was at and it was low at 1.65!!! She has to be at below .02 in order for us to go home. They will test her again in a few hours. Please keep your fingers crossed that they have dropped. 
    Monday brings a couple doctor appointments. Please also keep your fingers crossed that Riley stays well during our time at home.

  • FRIDAY, DECEMBER 4, 2009 11:00 AM, MST
    Yesterday was pretty good day. We were able to fight off the nausea and she was able to enjoy her day. Breakfast was not something she was interested in but lunch was another story...she ate a lot! We played in the playroom and made more laps around the floor. 
    Great-Grandma Judy came for a visit and rocked Riley so Ryan and I could have some lunch. She was very cuddly yesterday. We also had a visit from Great-Grandma Jackie and Big Binky (aka Poppy Bud). 
    We met with Dr. Graham from UMC who will be doing Riley's stem cell transplant in a few months. It all makes sense a few months we will go to Tucson were they will harvest some stem cells from Riley. After her last round of chemo here at Cardon Children's we will go back to Tucson. She will receive an extremely high dose of chemo and then her stem cells will be given back to her to help her recover from the chemo. We should only have to be in Tucson for 4 1/2 to 6 weeks instead of 2-3 months like we were told. 
    Tonight is the last dose of chemo and tomorrow she will be tested to make sure the drug is out of her system so we can go home. Keep your fingers crossed so we can be home by tomorrow night.
    Ryan & I are setting up an account for Riley to cover any medical expenses that she will have. Any money that is left over will be donated for research to cure AT/RT. Hopefully the account will be ready to go today. 

  • THURSDAY, DECEMBER 3, 2009 10:44 AM, MST
    Hello everyone, tonight will be her fourth session of chemo. Yesterday was a small challenge. When she woke up at about 6:00am she was ready to travel the halls. I tucked her into her wagon and we headed out. About a quarter of the way around our third pass she threw up. I have never seen so many nurses team up and help me help her. (I can not do vomit but, like a good dad I kept it down) While Riley was cuddling with mom she got sick again. Like the trooper she is, breakfast came shortly after and she ate all her pancakes. 

    The rest of the day was filled with more cuddling and a bit of grumpiness (can't blame her). In the afternoon Riley's great grandparents (Big Binky) came to visit. Riley quickly perked up and wanted to roam the halls. While she played with her Big Binky Jen and I ran home to gather more clothes and play with Jake and Laney. When we returned Riley was passed out in Big Binky's lap.

    Shortly after her great grandparents left, Riley decided she no longer wanted to tethered to the IV tree, and pulled her IV line out of her port. We stopped her fluids and took her to the sterile treatment room to reaccess her port. This time the nurse used a freeze spray and Riley didn't feel a thing. 

    Nighttime came around and she fell asleep around 7:00 pm. Aside from the frequent diaper changes and a leaky diaper she slept well. Thanks to a new full size air mattress so did we. 

    This morning brought a touch of nausea but we were able to head it off before it became an issue. She nibbled on her breakfast and fell asleep in moms lap. 

    Today at 5:00 pm Riley will get a visit from the stem cell transplant dr. (Dr. Graham from UofA) Until tomorrow, thanks for reading.  

  • TUESDAY, DECEMBER 1, 2009 8:01 PM, MST
    Day Two...not too bad today. Riley had a really loooonnnnngggggg night. Didn't really sleep due to the diaper changes every two hours. She just couldn't calm down. After the diaper change at 6am she finally could calm down enough to sleep. When she was woken for the 8am change she was her old self. Riley had a great breakfast and a decent lunch. We have walked the halls here more times than we can count. She loves to be pulled in the wagon or just to walk down the hall pushing her pump, which is about four feet taller than she is. Tonight brings two different chemo drugs. She will be on the same drugs tomorrow night. The staff here at the hospital are extremely helpful. They want to make sure that we don't have any doubts or concerns with her treatment. They are concerned that Ryan and I understand everything that is being done. It is a wonderful feeling to know that I can ask a question and they want to get me an answer.
    Tomorrow I plan on putting some new pictures on the site. Riley is still a ham even during chemo!

  • MONDAY, NOVEMBER 30, 2009 4:20 PM, MST
    Well today is the day...we're at Cardon Children's Hospital. They are about to start Riley's first round of chemo. Riley got to meet Matt Leinart today. She had some pictures taken with him. Oh what a day...we had some delays due to the holiday. They didn't have all of her test results here before we got here this morning so we have pretty much been waiting all day for those but we have them and we are ready to get started. Those test results showed that Riley doesn't have any cancer cells in her bone marrow or her spinal fluid. Oh what a relief!!!! 
    We know Riley is going to do great with this first round and we should be home before we know it. Thank you again for all of the continued support that we are getting. It means so much to us that we have so many people out there for us.

  • SATURDAY, NOVEMBER 28, 2009 10:54 AM, MST
    Well two more days of freedom...Riley is really enjoying her time at home. She's sitting in her chair, having a drink and watching TV with her dad. What a life! Today we are going to do some cleaning and probably go for a bike ride as long as the weather is nice. Not much else going on, thankfully. 

  • THURSDAY, NOVEMBER 26, 2009 6:47 PM, MST
    What a wonderful day! Riley slept great last night. We woke up, got dressed and got some Dunkin Donuts on the way over to the great-grandparents. She loves her Munchkins. Riley didn't really like turkey. She tried it this year but wouldn't eat it. Had to give her chicken fingers instead. How she would know the difference beats me but she did. After that visit, we went over to the other great-grandparents. Riley loves visiting them because they have cool old cars for her to "drive". 
    It was just the perfect day being with the family. We will be trying to have as much fun as we can during the next couple days. Until tomorrow...

  • WEDNESDAY, NOVEMBER 25, 2009 11:01 AM, MST
    Yesterday was a very busy day for us. Riley woke up on Monday with a runny nose. After watching her on Monday Ryan and I decided to take her to her pediatrician just to make sure it wasn't something serious. So now Riley has a minor cold. What else can we add to this little girl? Oh well, it hasn't slowed her down so I shouldn't worry. She also had a hearing test done yesterday. It was done to establish a baseline. Certain Chemo drugs can cause some hearing loss at high frequencies. 
    We visited my work and went shopping for some new comfy clothes for while we are in the hospital. Riley spent some time with her Daddy while I got my hair done. She had lots of fun yesterday. She was eating great too.
    Today will be a lazy day. Uncle Curtis is coming up from Tucson today for Thanksgiving. We are also going to go to Zoo Lights tonight. We are trying to have as much fun in the next few days before we have to go to the hospital. 
    We have such an amazing little girl. Such a fighter. Keep going Riley!!!

  • MONDAY, NOVEMBER 23, 2009 3:27 PM, MST
    We got some great news this morning...all of the scans and tests that Riley had done on Friday came back clear. As far as the tests showed today she doesn't have any cancerous cells anywhere else in her body. THANK GOD!!!! The doctor feels that since Riley is going into treatment starting at 100% she should respond to chemo well. 
    Today she had her port accessed for the first time. For everyone that doesn't know about the port here is a little background...the port is a small round metal disc with a catheter that goes into a major artery. The port has a hard rubber access point where the needle is inserted to administer the chemo drugs, draw blood or given any other medicine that is needed. When they access the port, a numbing cream is applied to the area so it doesn't hurt (yeah right). They then push a needle (which is pretty big) into the port. Riley cried a little but was able to get over it quickly. Luckily after the nurse was done drawing blood Riley was able to pick out a toy. Bribery is always a good way to get kids to do things.:) 
    Riley will start chemo on Monday. We have to call the hospital by 7am to make sure they have a bed for us. She will be in the hospital for at least a week for her treatment. If all goes well and she handles her first round we can be at home for a couple weeks before she starts her second round. If she doesn't handle it well, we'll just stay until she gets better. She will be getting treatment at Cardon Children's Medial Center, which is much closer to our home.
    We are going to finish out the day with some playtime and dinner with the great-grandparents. 

  • SATURDAY, NOVEMBER 21, 2009 9:14 PM, MST
    Today was a wonderful day.  Riley slept until 6am. She got a snack, watched a little TV then back to bed until almost 9am. We are still working on her eating but right now she loves any food that I can find in a pouch. Plum Organics, Ella's Kitchen and Happy Baby all make fruits and veggies in pouches (what a concept!). Right now we are willing to do whatever it takes to get calories into her.We want to keep it up so when she starts chemo hopefully she won't loose too much weight right away. 
    Riley is doing great after her surgery. She hasn't bothered the port at all. Hopefully it won't give us any problems and she won't even know that it is there. Her incision in her head looks great and it doesn't bother her at all. 
    It is absolutely amazing how well Riley is doing. It is almost like nothing has happened. She is still the rambunctious little girl that she was three weeks ago.
    Until tomorrow...

  • FRIDAY, NOVEMBER 20, 2009 11:09 PM, MST
    Boy oh boy....what a day. Our day started at 4:30 am. Riley was woken up so she could get something to eat before her surgery. Of course she wouldn't drink her Pedisure but she did eat pretty good. She was able to drink clear liquids until 10am but she decided that she didn't need to. We got to the hospital at 11am. Her surgery was supposed to begin at 1pm but the surgeon was delayed. She was finally taken back to surgery at 2:15pm. Riley had her port placed in her chest on the left side, a lumbar puncture and a bone marrow sample was taken as well. She was then taken to a different floor for her abdomen CT and the spinal MRI. We were unable to see her until 8pm. Thankfully she recovered quickly and we were able to take her home. She is sleeping right now very peacefully. 
    On Monday we meet with the oncologists to discuss the treatment options for Riley. Ryan has been reading up on the different options and I feel he understands the differences pretty good. Thankfully while we were waiting for the surgery to begin today we were able to speak in depth with one of the oncologists about the different treatment options. We feel very comfortable now about what our choices are. Ryan & I are hoping that we will be able to stay home for all of the treatment. We will have to wait until Monday for the decision to be made.
    Thank you to everyone for your thoughts and prayers. It has kept us going through each day. 

  • THURSDAY, NOVEMBER 19, 2009 8:24 PM, MST
    Today Riley had a follow up with the neurosurgeon. Dr. Bristol said everything looks great and that she will be checking the scans tomorrow after everything is done. She had an uneventful night and has been eating a little better. Hopefully that will continue. Tomorrow is the big day. Ryan & I have our fingers crossed that all the tests are negative. Please keep your fingers crossed and say an extra prayer for Riley tomorrow. 

  • WEDNESDAY, NOVEMBER 18, 2009 5:03 PM, MST
    Riley has made huge leaps the last few days. She is walking so much better. She has also picked up a few more words as well. Riley is sleeping great too. Riley has an appointment with the neurosurgeon tomorrow for a follow up. Friday is the big day though. She will be getting her port put in, a spinal MRI, abdomen CT, a lumbar puncture, and a sample of bone marrow will be taken. This is all to make sure that there isn't any more cancer in the rest of her body. The port is a device that the doctors use to administer chemo instead of doing it by IV. 

  • MONDAY, NOVEMBER 16, 2009 6:50 PM, MST
    Another wonderful day...Riley has been walking on her own today. She has talked more and been a little more independent. We are almost back to the way things were before the surgery. She is sleeping better as well, only waking up one time. Riley's appetite has returned as well, thankfully. Each day is a blessing & we are thankful that our baby is doing so well. 

  • SUNDAY, NOVEMBER 15, 2009 12:59 PM, MST
    Today, Riley has been showing her true colors. She is coming back to us a little at a time. She loves to sit in her stroller in the living room. I think she feels safe there. She is eating better and sleeping better too! Hopefully this week will bring her some comfort and happiness. 

  • SATURDAY, NOVEMBER 14, 2009 5:45 PM, MST
    Ok....we're home!!!! I have never been so happy. Riley is doing great. She had a bath this morning, her first real bath in two weeks. Now that she has the freedom to be held without any restrictions she doesn't want us to put her down. We are trying to keep her pain at bay but that sometimes can be a challenge. We don't want to overdose her but I hate to see her cry and be upset. Such a balancing act but we need to get used to it since this is only the beginning of a very long and painful road. Thank you so much to everyone who came to see Riley in the hospital and for all the gifts. Everything is greatly appreciated. 

  • THURSDAY, NOVEMBER 12, 2009 3:34 PM, MST
    Well Riley is having a great day. Today may be the last day that we are here. Her drain may come out tomorrow and then we get to go home for a week. We would have to come back to do a few more tests and have her port put in for chemo. Going home would be great.