The Big Day

The "Big Day" was not so big.....everything went really well last Tuesday. She was in a great mood! I think because she has been feeling fairly normal lately they finally got to get a dose of the real Ryan. In the past she has been very quiet, and not very friendly. This time she was talking and laughing when they would try to play with her...it was great! She had her procedure and that went well. She got her IV meds and that all went well. They have ordered her daily IV Meds to be given at home, so home health will be out to give that the rest of this week, then next week Tues., Wed, Thurs, and Friday. The medications that she is getting through her IV and the ones she will take orally are going to cause her counts to drop....a lot. So, again we will have to be on the look out for fevers, and she will continue to be a shut-in. I am so glad it is Hot-cocoa, warm fuzzy blanket, and reading books weather!! That makes it a little easier. Because her counts will be low for a while.....we don't have to go back down to UCLA until December 16th....YEAH!


We also got news they are going to eliminate one of the phases. The next phase would have been Intermaintenance #2 then Maintenance. Now she will just be starting Maintenance. She has just responded so well! I truly feel blessed. So all is well, and we just have to pray for no fevers, and for her little body to continue to fight like a Champ!!! Love to all!!

Tough Day Ahead

Ryan holding her Angel bear...Rosabella??!!

Hanging out at the hospital!

Hello all! We had another couple of days in the hospital last weekend. Last Friday she started running a fever and again we landed at the hospital for two days. This time thankfully we were able to go her Pediatricians office and bypass the ER!! Much better than sitting in the ER having her exposed to all of the yucky stuff that goes through there. We have now realized anytime she runs a fever and her counts are low, we are unfortunately just going to have to plan on a little trip to the Peds floor for at least a couple of days. More times than not she is just going to catch little viral bugs, but they have to treat her immediately with antibiotics in case it is bacterial. A bacterial infection would run ramped in her little body due to the fact she has ZERO immune system when her counts are low. We have also realized that it is better if we limit her exposure to anything. Needless to say she has become a bit of a shut-in.

Logan and Julie before the Carrie Underwood concert

Julie and I....I love her and miss her so much!!

Despite the fact that she has not gone anywhere she has been busy. We had a visitor come into town...her Aunt Julie. She was just here last month but came back into town to go to the Carrie Underwood concert. She surprised Logan with her second ticket, so Logan got to go to her first concert. She had a blast!! The amazing part about all of it is that Ryan did not say a single word about not being able to go. The whole time they were getting ready she was just excited for Logan. She got to hang out with Aunt Julie quite a bit so I know that was good for her. She does a pretty good job at understanding why she can't go and do. Amazing Girl!!

Ryan checking out the golfers on the golf course with the new binoculars

I LOVE THIS PICTURE!!!!!

Amazingly Beautiful!!

Ryan NOW is doing great...full of energy, and playing as if there is no battle to be fought right now! That is the way we like to see her!!! Her beautiful bald head is the only constant reminder!

Ryan Paige

Well this coming week will be heading down to UCLA. This is a week when she is "count dependent", but I am sure her counts will be high enough to receive the chemo since her counts were up to 1000 this past Monday and she has not had anything now to knock them down. She will be getting three new types of chemo this visit. It is hard for us when we know she is getting something new because we never know what side effects she will have from them. She is expected to get more mouth sores, no appetite, lose weight, and her counts will drop low and likely stay low for a while. So, Tuesday she will have a lumbar puncture treatment (procedure), which we have not had to do for a while. Also...two IV and one oral medication that she will take for 14 days. One of the IV medications she will have to get for four days this week and four days next week. Thankfully we have home health available to come to our house to take care of that for us so we don't have to travel down to UCLA everyday!

Thank you for ALL of the continued love and support. We can not express our gratitude enough! Continued prayers would be much appreciated this coming week...that she will have limited side effects and continue to be victorious.

The Head Shaving Event

The Before

Here we go!

Not sure about this??!!

The After....BEAUTIFUL!!!!

Ryan looking in the mirror the first time.

Ryan and Mommy (I could not have been more proud)

Mr. Ad Man hopped right up there saying "my turn"

Kyle's turn....he looked handsome as ever (of course!!!)
Time to shave Daddy's head!

Dave's Turn!!!
Charlie Bear!!

All the Baldies!!!

All The Guys!!!

Our Family

Bald and Beautiful

Hello all! Hope everyone had a wonderful week. We did not go to UCLA this past Tuesday. I realized that I forgot to mention we do not have to go back down to UCLA until Nov 18th. We would have only had a two week break, but they will be closed for Veterans Day and they don't expect her counts to be high enough anyway.

She had been really hanging in there and making me feel as though this was not going to be that bad.....until the weekend after Halloween. She since has become very tired and just not herself. Very quite. When Diana came she was wondering if her blood levels were low. She even noticed a difference. I figured that all the chemo was just catching up with her, and now I am pretty sure I am right.

She began losing her hair Monday...... so Wednesday we went to Matthew's fire station and had our head shaving party. I am amazed that when it started coming out it just came out. We were going to try to wait until Matthew came home Friday, but she was not going to make it. She was miserable! It was tickling her arms and face, and everytime she would lay down on a blanket a whole bunch of it would be all over the place when she got up. I could tell it was really getting to her. She wanted to go to the station and do it, so we went! We all did except for Logan. She has had a hard time with this. Adam even climbed up in the chair and got his shaved. A couple of the guys from the station sported the bald do in support of Ryan, and that was awesome for her to be able to help shave their heads. We are all baldies and we are all starting to get used to it. Even Logan!!

I will post pictures as soon as I can we are having some serious issues with our computer and internet. Hang in there and I will have a lot to post!!!!

A little hospital visit

Well, we went to UCLA on the 21st and everything went GREAT! No problems at all!! Her "counts" were up to 4300. WOW! We were not expecting that. Because her counts were so high on Monday, we allowed her attend Kyle's last football game on Saturday. They had put together a special thing for Ryan to come out on the field and be named a Team Captain. The boys also all signed a football for her to take home! It was an awesome experience for her and although she was a little nervous at first she warmed after she got out there. So neat to see all those boys that have to be so tough on the field be so sweet to a little girl. Thanks Guys!!

She also got be a flower girl and walk down the aisle Sunday. She was supposed to be a flower girl for her Uncle David and Aunt Holly's wedding, and we had originally respectfully declined due to the doctors orders. When her counts were as high as they were we figured it would be okay. She had a dress, and Matthew, Logan, Kyle, and Adam were all in the wedding. Then she was having such a great time we decided to allow her to stay for the reception. She had a blast....we all did! It was a beautiful wedding and a beautiful reception! Congrats to David and Holly!!!

Monday Miss Diana (our home health nurse) came to draw Ryan's labs and by 1pm was letting us know that her counts were now down to 500!! WOW again!! We were not expecting that either. We did not realize that they could drop that quickly and we were therefore riddled with guilt for letting her even go to the wedding!!! Tuesday when we went down to UCLA I started bawling when I saw the docs. I confessed to allowing my daughter to participate and enjoy herself and they reassured me that it was all okay. Family events like this are sometimes worth it. They just told us to hope and pray for no fevers!!?? All was good, we came home, and then....she spiked quite the fever. She had slept on the way down to UCLA then slept all the way home, which is not normal for her. After being home for a while I noticed she was burning up. I took her temp and it was 102.3. We went into major panic mode. We called UCLA immediately and were advised to get her into the ER A.S.A.P. Thankfully they had given us pediatric face masks when we in the clinic that day. We headed to the ER and ended up being admitted for 2 days...YUCK!! The real Yucky part is that by the time she got up to the Peds floor her fever was almost gone. Unfortunately with her situation, she has to be admitted and receive IV antibiotics regardless because they have no way of knowing whether it is viral or bacterial. So, we spent a couple of days bonding and bored!!!

The great thing from all this is that her counts came up to 1400 allowing her to go Trick or Treating!!! Originally on Tuesday they had told us she would not be allowed to go Trick or Treating because her counts were so low. But, by us being in the hospital we had an updated number. We made it around the block and that was about good for her. The only bummer is we usually host Trick or Treating at our house....Family, Hot Cider, Hot Chocolate, and snacks. This year we were not able to do it. That's okay because next year we will be back at it!!!!

We now have a couple week break from clinic, but I will be posting some more entries. I still have to put up our Light the Night entry and want to put up some pictures from the wedding.

Thank you again to everyone for being so supportive. EVERYONE is truly a part of her success in this journey. Love to all!!!

P.S. I am trying to upload pictures from Kyle's game and Halloween on here and for some reason it won't let me so I will post those later!!