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!!

Light the Night

Light the Night took place all over the country and we had people walking in Ryan's honor all over the country. Such an awesome way to show support! I am truly thankful. With Ryan beginning this new phase of treatment she needed an Echo cardiogram (ultrasound of the heart). She needed this because one of the medications she will be on could cause damage to her heart. Through talking to her doctors they say the risk is now much lower now because they have discovered giving the medication over a 45-60 min period verses giving it as a "push" (1-2 minutes) has had less of an effect on the heart. This type of information is made possible due to studies being done. Studies made possible by The Leukemia and Lymphoma Society.

The Illuminators
Tacoma, WA September 28th

This is where Sarah and her crew the Illuminators walked.
She said they could not have asked for a more perfect evening!!

The Valle family...our friends from Redlands
Riverside, CA October 3rd

Team Ryan
Royal Oak, MI October 3rd

They said it was freezing, but they had a blast!!!

My beautiful cousins!

Dad, Kim and Aunt Diane

Mark----GO Team Ryan!!

Thank you again to all those who walked and to those who donated!! We appreciate it, Ryan appreciates it, and children/people all over the world appreciate it!

Long time no blog!!!

Hello everyone! We are doing well and have officially moved into our new house!! I love it!!! We love it!!! It is the perfect amount of space for us and all of our stuff. It has been one heck of a move but it is all over now, and just in time for Ryan to begin Delayed Intensification, the next phase of treatment.

Ryan wearing her Halloween hat she got from the folks at UCLA.

We went down to UCLA this past Tuesday....the 14th. She was delayed a week from starting (she was supposed to start on the 7th) due to her counts not being high enough. Everything went well. She had an IV push medication and her lumbar puncture treatment. She did start a new IV medication that is supposed to really wipe her out and drop her counts. We are also expecting her to lose all of her hair within a week or two. So, we will be having the "head shaving party" sooner than later. She also is taking the steroids again. Only for seven days, but she may get back the hunger cravings again. They also gave her a Flu shot. Thankfully they were able to do that while she was out for her procedure. She had an Echo Cardiogram (ultrasound of the heart) because one of the new medications she is taking could have an effect on her heart. That is a little scary to think about. Other than that, everything went fine and we will be going back down next Tuesday!!

Aunt Julie and the Kiddos

We also had a quick visit from Grams and Aunt Julie. They got to be here for Light the Night and also my mom got to come down to UCLA with us. She now has a visual of what goes on down there. It was nice to have them here! It was the coldest it has been this year so they left with colds and we all got colds....yuck!

Everything is going okay and I will try to blog more now that we will be going down there every week and there will be more to report. Thank you so much for being patient with me. Also thank you again for the continued love and support!! Love to ALL!!!

Reality check

Hello all! Well, Monday they came to draw Ryan's blood. By the afternoon I received a phone call informing me that her "counts" are low. No contact with anyone sick....watch for fevers....no crowded places....good hand washing. I don't know why but, it all hit me like a ton of bricks. I have my days, but they usually are very few. Mostly because life has been so "normal" around here. So, now I am trying to keep it together, while packing and dealing with all the other day-to-day stuff. The tricky part is......Ryan is doing fine. She looks fine, she feels fine (which is great!!!) so, that makes it hard to tell her she can't go to Logan's gymnastics or other activities. It is all for her own good though and that's what I keep telling her and myself=)!

Everything else has been going well around here. We are getting excited about moving. We will have a lot more space and a huge back yard for the kids to play in. We will not have a pool like we do now, but I am excited....trampoline here we come (with a net around it of course).

Kyle has been doing great in football. They have not been as successful as they were their first game, but they are certainly putting it all out there!!! He also got the lead roll in the school play "Scrooge". We are so proud! Rehearsals start soon for that, and we can't wait to see his performance.

Logan is doing well in school. Her soccer team is full of team spirit, but unfortunately I think they are all more into cheering for their team than they are into playing for their team. Last game they were doing cartwheels out on the field while the ball was in play...lol. Play hard...Have fun...right??!!

Ryan is doing well with her preschool work. WOW is it ever hard to teach your own kid stuff. It is one thing to go through a book, or teach them how to write letters, but when you have to teach them based on actual things they have to do...it is harder. I am not sure if that made any sense??

Adam is just ADAM! The little man I call him. He is doing a lot better at playing with his sisters, not just destroying all their games and activities. That is neat to see them playing so good together. All he talks about is playing football just like Kyle. He does have a lot of pride in his Daddy's line of work. He frequently tells people "My daddy drives a Fire truck" strangers, friends, anyone!! It is really cute!

We maybe offline for a few while all is being switched over, so I will try to squeeze another entry in before then. In the meantime I hope all is well with everyone, and Thank again for the continued support!!! Love to All!!!

Pictures from Tuesday

Ry and her Daddy!!
He fell asleep on the gurney when we were waiting for her to go back (he was up all night on duty). I tried to ask them if they could wheel him back there then wake him up but they would not go for it. I thought that would have been hilarious!!!

Ry being a little goofy

Well she was back to her old self....asking for food the second she woke up.

Mommy and Ryan!!!

Another Break...Yeah!!!

Ryan Paige the BEAUTIFUL princess!!!

My girlies playing peekaboo!!

Well, Hello everyone. Again, we are here and everything is going very well. We went down to UCLA yesterday for a lumbar chemo treatment and an IV chemo treatment and everything went well. Her counts look great and she is doing very good/normal for this phase of treatment. Everything that they are seeing in her lab results is exactly what they expect. We did get news that we again have a couple week break. YEAH!!!! We do not have to go back until Oct. 7th. Again that will be the start of the next phase.....Yuck! I am having a hard time thinking about that especially since it has been sooo normal around here. But I know when the time comes we will just face it, and deal with it as best as we can.

We are also in the process of moving. It is a much bigger house and it is right around the corner. So that will be nice. We wanted to be able to move in and get settled before Ryan began this next phase and it looks like we are going to be able to do that. Not gonna lie, I was stressin' just a little about our housing situation.....so, thank you Lord!!!

Kyle after his first game Sat.
They were victorious 14-0!
GO FALCONS!

All my boys!! (I love this picture)Logan before her first soccer game!!!
GO LIGHTNING STRIKERS!!!!

We have had football games, soccer games, practices, gymnastics, and all kinds of other activities to keep us busy. I apologize for the delay in blog entries and I know that there will be a lot more to report come October. I know we have a lot of folks out there that check often for updates!!!
Again Thank you for all the love, support, thoughts, and prayers. Love to all!!!

More Supporters

Hello Everyone! All is well here. We were able to take Ryan to preschool orientation. We had a little hesitation from the doctor because her counts were not great. I just reassured him that we would get out of there as soon as we were done and use lots of hand sanitizer. I really wanted her to have the experience of going in and meeting her teachers, seeing where her cubby is and seeing her spot. She loved it, and sat right down and started coloring her papers. It turned out that Logan was out of school that day, so she got to come too. She had gotten a paper cut on her eyeball, and the doctor ordered her to stay out of school. Ryan's teachers were Logan's teachers when she went there so it was nice for her to get to see them.

Afterward we did make a quick stop at the gym. We were regulars at our local gym here before Ryan started getting sick. When we started not showing up the ladies at the Kids Club called to see what was going on, and the whole staff has continued to be so supportive. They asked that we bring Ryan in cause they had something for her, and I had no idea!!!

Ryan with one of the Managers- Frank

A majority of the staff had on their Team Ryan T-shirts
Thank you all for being a part of Team Ryan!!

They not only had on the T-shirts, they had a box full of gifts for Ryan!

Thank you all so much!!!

T-Shirts

This is the Gonsman Family. The wonderful family behind the T-shirts. They have made the idea that Lindsay had come to life and we appreciate them for it. Terry has worked very hard and for many hours, and the shirts are AWESOME! I want to Thank them for all they have done for our family. They truly are a huge part of Team Ryan!

This is Ryan's Great Aunt Wendie who is obviously a beautiful Team Ryan supporter!!!

This is Noah, Ryan's cousin. Noah just had a birthday party where the colors were Green and Orange and his party favors were Team Ryan T-shirts. They brought up Ryan's page at the party so all could see what/who they were wearing them for. Such a great idea! We hear they had a great time I just wish we could have been there with them to celebrate his birthday.
Happy Birthday Noah!

Here are the party favors from Noah's party!!!


Noah and his Mom, my cousin Angie ;)
Thank you Angie!!

All of the kiddos from Noah's party sportin' their new Team Ryan T-shirts.
So cute!! Thank you all for being a part of Team Ryan!

Any one who purchases or has purchased a T-shirt please E-mail me a picture so that I can post it. It is so touching to see pictures of people out there supporting our Ryan. I have Ryan come to the computer and look and she absolutely loves it!! If you are interested in getting a T-shirt, just go to the join Ryan's race page http://joinryansrace.blogspot.com/ (or click the link to the right) and you can order from there.

P.S. I apologize...for some reason I can not get the two pictures at the top any larger. I have tried everything I know how to do for now, but I am still working on it. I might need the "Blogging for Dummies" manual.