New Condition

I'm not sure if we have mentioned before but last year in April, Ryla has been having these episodes where her head would drop every 2-5 seconds and it would last in a timespan of 10 minutes. We weren't sure what they were so I brought it up to her Hemonc Dr. to see if he might know anything about it. He said what it seems like is that it may be some type of seizure.

So we made an appointment to see a neurologist. I was able to record one of Ryla's episodes and showed it the neurologist. He said that from the looks of it, it does look like seizures. I for one have never seen this type of seizure before. I'm use to seeing the ones where they spasm but hers is complete opposite. But they said to be sure she'll have to do an EEG. So we had that done and they said that her brainwaves are acting like how an epileptic patient's brainwaves act. So they put her on a seizure medication to see if it will stop. Unfortunately it wasn't working.

So on April 1st we admitted her to Children's to do an inpatient EEG and they monitored her for 3 days on video. Within our stay she's had 2 episodes that they were able to record and from there they were able to determine that it is definitely seizures and the type of seizure is Myoclonic seizures. Now Ryla is on a different medication that treats Myoclonic seizures.

She's still having seizures for the fact that we're trying to find the perfect dosage for her so it's still a process. But she doesn't seem bothered by it which is a relief for us. I don't know what I would do if it will effect her immensely. She's still fighting strong and nothing seems to slow this young lady down! Go Ryla!!

Ending the Year

I know it's been a few months but we've been extremely busy. On August 19th, we moved out of military housing and into our brand new home! Ryla was so excited that she gets her own room. It's filled with girly stuff, just like she wanted it to be!

She enjoys her room very much and likes that she now has privacy away from her brothers haha!

On November 24th we celebrated Thanksgiving in our new home with her Mommy's family. Every year since 2005 it is a tradition that we have a theme of what to wear and take family portraits with Mommy's handy-dandy camera and studio lights. This year our theme was to wear fall colors. We finally have a family portrait where AJ is smiling!

Today is her last day of school and will be on vacation for a month. She is enjoying school very much and learning very well! She has definitely come a long way and just reading this entire blog, I just can't believe what she has done and gone through and to see her smile today just makes my heart melt. I know a lot has stopped following Ryla's story but I'll continue writing just in case there are still people there that is silently following =) Thank you. Have a wonderful New Year.

BIRTHDAYS! BIRTHDAYS!

So Mommy turned 31 on June 26 and the following day, Ryla turned 8!!! Baby girl is all grown up! But the night of Mommy's birthday, Ryla started having a fever and she was sick on her 8th birthday. Not to worry because she is back to cute self today but she was just feeling completely terrible on her birthday =(. We were planning on a quick party for her in her classroom the morning of her birthday and I was about to cancel it but she said that she really wanted to have her party. So we actually went to her school for about 20 minutes, sang happy birthday to her, passed out the goodies for her classmates and then we quickly went back home so she can lay down and rest. I asked her that we could've done her party another day but she said that she didn't want her friends to be sad that she wasn't there for her birthday. Baby girl is always thinking about others before herself. Such a total sweetheart! It took about a week until she got better.

On July 7th we were excited to say that Ryla's baby brother, Alan had just turned 1!! We didn't have a party for him... yet. Daddy's coming home soon so we decided to just wait until Daddy came home to celebrate. But we did shower him with presents! Of course Ryla and Alex helped their baby brother by unwrapping his gifts and of course they were the testers of the toys as well. They were soo good at testing out the toys that we actually had to tell them to stop so Alan can have a turn. Crazy kids! Gotta love em!!!

Happy Father's Day

Ryla and her two brothers wished their daddy a very Happy Father's Day even though they can't celebrate together right now. Daddy left to fight for our country back in February 2nd 2011. He is due to return back to us sometime in September.
Ryla's daddy was proud to be a part of Operation Tamagachi. As soon as the earthquake and tsunami hit Japan back in April, they were the first to arrive to assist in the relief. It was a dangerous task especially having been exposed to radiation but nonetheless, they did what they needed to do.

He will be missing a lot from the kids but it's a sacrifice that he's doing to make sure we're safe from any harm. The kids miss him terribly but cannot wait for the day that daddy comes home. So for now we can only celebrate Father's Day through emails with him so we are planning to celebrate EVERYTHING when he gets back. That would be Mother's Day, Father's Day, Ryla's 8th birthday, Mommy's birthday, and AJ's 1st birthday.

During daddy's deployment, he received the Senior Sailor of the Month award and we are truly proud of him!

Losing one of our Own.

9 months ago on September 30, 2010, which happened to be her Daddy's birthday, Ryla lost her grandfather to cancer. He was diagnosed on September 10, 2010 with Acute Monocytic Leukemia.

He was always there for Ryla especially the time when Ryla went through it. We remember him saying how he wished he could take her cancer away. He couldn't bear seeing Ryla go through what she went through. He was very proud of his little granddaughter. He had no doubt she would pull through.

5 months before Ryla's grandpa past, we had also lost Ryla's great grandmother (her grandpa's mom). Our family has been slowly moving on but it is difficult. Ryla knew what her grandpa was going through when he was in the hospital and she was supporting and cheering him on to beat the cancer. I know it brought back memories for her because she always kept bringing up the times when she was hospitalized. We will always remember him and will continue to miss him.

Adolfo C. de la Rosa
June 9, 1947 - Sept. 30, 2010

Cbr

As soon as we found out that we were having our third child, we signed up with Cord Blood Registry. Rady Children's Hospital explained to us the importance of doing this for the sake of Ryla. If Ryla were to grow up with other health issues that can threaten her life in any way, this blood cord that we saved will be able to save her life. So Cbr had mailed us the cord blood kit and as soon as AJ was born, the Doctors quickly saved the cord blood and a representative from Cbr came to the hospital and personally picked up the kit and drove it from California to Texas that night! If you are all curious to know more about this, visit the Cord Blood Registry website! AJ not only became another blessing, he also became an instant hero to Ryla. We can sleep a lot easier now that we've made this move to save AJ's cord blood.

2011

We are still here! Ryla is growing up to be a beautiful, bright young lady! Within this past year our family has been blessed with another addition! We would like you to meet Ryla's new baby brother, AJ! Ryla was excited to moment she found out that Mommy was going to have another baby! AJ entered our world on July 7, 2010 and Ryla has been a great help raising baby AJ. She helped with the diaper changing and keeping AJ company and making him laugh. When he would cry, she would run to get his bottle to comfort him. She's such an amazing older sister! Now, AJ will be a year old next month! Our family has been slowly but surely getting back up on our feet. We will start slowly updating you on all the events that has happened that we failed to inform you. Thank you for those who are still around to witness Ryla grow up to be an amazing little girl!

ITS BEEN FOREVER

I know it's been a almost six months since I've last updated you all on Ryla. First of all, HAPPY NEW YEAR to everyone! Ryla has been doing awesome! She's been making good progress with everything. Her learning abilities has slowed up a bit since her chemotherapy but she has a wonderful Kindergarten teacher who has been so patient with Ryla. She's a wee bit behind her other classmates but is making progress. She still has tight muscles (effects from the chemo) so she still can't write very well but she is definitely trying! She can write her name as long as we're holding her hand as she writes but you can feel her moving the pencil/crayon on her own. With her walking, she still can't run very well and would choose not to play in the playground at school but she's definitely better every day.

There are a lot of things that we've noticed about her since the ending of her chemotherapy. Her true self is starting to come out and we're getting to know more of her interest. Like for example, she LOVES to perform. She loves to sing and sing in front of an audience (as long as she's not by herself of course)! Not only that, but she loves to watch performances whether it would be singing or dancing. She's a very theatrical little girl. So I wouldn't doubt she would want to perform on Broadway someday! I do have a few pictures that I will share with you on my next blog post. There are a few more pictures that I still need to download off of my phone but I will share them with you as soon as I can. I hope you all are having a fantastic 2009 as we are! We will update you more soon!

NO MORE CHEMO!!!

It's been the longest wait ever and it has finally arrived. Yesterday, Ryla was officially OFF CHEMO!! You can imagine so much has just been lifted off our backs. I also wanted to tell you all that we are going to hold a No More Chemo party for her. It's not going to be a huge one like we planned at first but we will still have plenty of goodies for her ;)

Please come by her page and sign the guestbook so that she has something to look back on and see all the wonderful messages you sent her! ;)
www.freewebs.com/rylalove

5 MORE DAYS!!

I am so proud and happy to say that Ryla has only 5 more days left until NO MORE CHEMO!!!! It has been a bumpy ride for the past 2 years but now I'm glad that it's finally over.

As for her No More Chemo Party, we might postpone it but I will let everyone know the details about that. I hope you all had a wonderful 4th of July!

Pneumonia

I haven't been able to keep everyone updated on her condition because we haven't had any internet for the past few weeks.

Our goal was to never be admitted in the hospital until the day of removing her portacath. But it didn't happen. On February 7th, Ryla was rushed to the hospital with a fever of 101.7. Daddy was away on Military training in Nevada at the time and Mommy, Ryla and Alex were all fighting a cold. Ryla of course had gotten worse out of all of us. She had a small case of pneumonia and doctors were able to treat it with two antibiotics.

Ryla is doing great now. She's over the pneumonia and is her happy little self again. She's actually gained her appetite back and is now 45 lbs!

I am happy to say that in less than 5 months, Ryla will be Chemotherapy-free and in September our little Ryla will start Kindergarten! No more shopping for toys this year. It's all about school supplies now!

I will also keep everyone updated on her No More Chemo party that we will be throwing along with her 5th Birthday.

COUNTS ARE UP!

Perfect for the Holidays! Ryla's counts are awesome! Her immune system count is a whopping 2,900! Just image the week before she was at 760 and a week before that she was at 160! Beautiful jump! We know her Bone Marrow is clean from cancer! She will be able to enjoy the holidays. She's scheduled for another labs on January 3rd and then she'll receive a spinal tap, Vincristine (chemo) and decadron the week after. I'm only counting on the Vincristines now until her Chemotherapy is offically over. Put it this way, she has 6 more doses of Vincristine after this one coming up until her Chemotherapy is over!

Like I've mentioned before, I will be throwing her a HUGE NO MORE CHEMO/5th BIRTHDAY PARTY next year and I'm inviting everyone who has followed Ryla's story and who has been here for us and the family. It would be great to see all of you there. As soon as the even gets closer, I will start sending information about it.

HAPPY HOLIDAYS to everyone!!!

Bone Marrow Procedure

Some of you already knew that today Ryla was scheduled for a Bone Marrow Procedure because her immune system has been low for the past two weeks. Her counts last week was 160 and today her counts jumped up to 783! Even though her counts are now back up, they still wanted to go ahead and do the Bone Marrow procedure anyway, so she did. When they wheeled her in the procedure room, I was carrying the laptop and she was watching her video of her cracking up when she was on the Decadron (That video is posted on her website on the Updates Section). It was funny because she was laughing the moment they put her to sleep and then her laugh got cut off and she dozed off. She did extremely well. She did wake up saying "Owee" and woke up a bit on the cranky side but now, she's playing and being Ryla. I just want to thank everyone who has kept Ryla in their prayers and because of you guys, Ryla's been doing extremely well! THANK YOU!

Procedure

I'm not sure how many of you had already heard but this coming Thursday, they're scheduling Ryla for a Bone Marrow procedure because for the past two weeks, her counts have been low. They want to make sure that it's the Chemo that has caused her counts to be low and not Cancer. It makes me and her daddy nervous for this because the last time she ever had a Bone Marrow Procedure was in the beginning of her treatment. Her original schedule for a Bone Marrow was not supposed to be until the end of her treatment. Please pray that they will find no Cancer and that she can continue to live her life as normal as possible, just like a 4 year old should.

Latest on Ryla

It's been a while since an update so here I am updating you all on some news about Ryla. She's grown 4cm since her last check up so they've decided to up her dosage of Chemo. Her blood count looks awesome! Her ANC count has been up in the thousands (which is a big difference from the times that she was only in the hundreds). We have 8 more months left until her Chemotherapy is over! Then in August of next year, she will go under surgery to remove her port. YAY! Then we're going to throw a huge party for her :)

Next Saturday we'll be heading up to Anaheim to go to Disneyland before the year ends! We're finally going to use the tickets that a very good friend of ours has given Ryla earlier this year. I know Ryla is extremely excited!

She's able to read a few letters now! I have flash cards and she's able to tell me what A,B,C,M,O,R, and Q is. The rest is still a challenge but she's slowly getting there. Her writing though might take a while. Since being on Chemotherapy she's developed this shake with her hands so it sort of stopped her from being able to write properly. She only scribbles for now. She's a few steps back from her age group because of the cancer but I know she'll pull through just fine. It will be hard for the first year of school since she doesn't know how to write any letters or even knows how to draw yet but she'll get there. Anybody have any suggestions on how I can get to her start writing, please let me know. Her attention span is only about less than 5 minutes which is also a challenge. I have to somehow keep her focused on learning and I've tried almost anything I could think of but still after a few minutes, her attention is towards something else and I'm no longer in existence. I've tried emptying out the room so that there's nothing there to distract her but somehow she manages on finding something to do other than learning. It's very frustrating at times because I don't want her to fall behind. But she's a wiz with the computer though! She surprised me that she knows how to go through some of my files without messing anything up! :)

Anyway, I updated her website in her Ryla's Progress page. I added the latest picture of Ryla. So come by and check it out!

TERRIFIC!

Hey everyone! Ryla has been doing great! This month being on steroids was totally opposite from the usual! She was mostly happy! You can view a video tape of her today running back and forth and cracking up: http://www.youtube.com/watch?v=26FoL0ajyNc

We've also updated her Progress page and every month is now covered with a picture! Come check out how fast her hair is growing! So far so good!

GO RYLA!

Ryla has been doing good! I know I haven't been updating you all on her condition. Just put it this way... No news is good news! Last Thursday we had labs. Her ANC (Immune System level) was down to only 190. That is low. So we put the chemo on hold. Today she had labs again and this time it shot up to 600! Her body is working really fast!! I LOVE IT! :) She's doing soo good I'm so happy... We're all happy!

FINALLY A BLOG!

Yes, I know it has been a while since I've posted a blog up. Sorry for that. Recently my laptop's internet connection messed up somehow and so now I can't get on the internet with it. So I am currently on my desktop computer upstairs. It's hard for me to get on the internet without having the kids screaming for me to come downstairs so I've been pretty much busy with them everyday, downstairs. When the laptop had internet, I was able to just sit on the table downstairs and keep an eye on the kids at the same time.

Right now Ryla is at her grandparents house. Alex is here along with Daddy so now I have time to come up here. Ryla has been doing really good lately considering her counts are in the borderline (caused by the chemo). She's up for labs again this coming Thursday. This past week of Steriods was horrible! She was so emotional, moody and so clingy! But it drained out quickly and we had our old Ryla back! I know I haven't posted a picture up of Ryla for the month of May on her website. I wanted to give you guys a two month difference with her hair growth and I'll post up pictures of her on her birthday which is coming up very soon!

MUCH BETTER COUNTS

Last Wednesday on her lab appt, her counts went down. So they postponed the chemotherapy. So all she's taking at home is the antibiotics. Still I was not convinced about the results because of the nurse who drew her labs. But later on today we went again for labs and this time it was one of the usual nurses we've had and the results came out that her ANC is now 860. So it was low but now it has gone up. So we're restarting the chemo again but in half dose.

LOW COUNTS

Her lab results from yesterday's appointment showed low counts. I'm not sure if I should rely on it considering the fact that the nurse who drew her labs had absolutely NO CLUE on how to prick a finger! I was getting irritated but she was such a sweet girl that I just bit my tongue a bit. When you prick the finger, you have to prick it from the side. ALL nurses as well as those who are diabetic should know this. Well this nurse pricked her finger from the middle of her finger and all she had to fill was of the same size as a fingernail but the blood was barely coming out that by the time she was done, the blood in the tube clotted! The nurse besides her finished a boy's lab that came in 2 minutes AFTER the nurse had already pricked Ryla's finger! So she told me that she had to prick her finger again so I spoke up and told her, "You're going to have to prick her from the side of the finger because that's where the blood flows faster". My goodness it was the messiest finger prick I've ever seen! She had blood all over her gloves and on Ryla's finger! How in the world can you mess up on a finger prick?! She was slow on getting the blood too because she kept wiping her finger and when she was done, she didn't even close the tube right away! Luckily it didn't clot this time! But next week when we do the finger prick again, and she happens to be there, I'm going to ask her if I can do it for her hahah!

UPCOMING EVENTS

The next event that we will be attending in Ryla's honor is on the 29th. Ryla is the Honorary Embassador for the Blossom Valley Elementary School! They will be throwing her a party as well as raise money in her honor! What a way to go, huh? Make-A-Wish Foundation is making this happen for us! Rachel from Make-A-Wish is such a sweetheart!! Friends of Scott Foundation is another foundation that supports our family as well. We are very good friends of Scott's mother. She's been the one helping us with gas cards. She is truly such an amazing person!

In June, we will be celebrating Ryla's birthday and in July, there will be an event at the Del Mar Fair Ground. Can't wait for that! It's the horse race and I know Ryla would love it! Seeing all the horses and all!

Celebration of Champions®!

The most AMAZING weekend I ever had...


Just wanted to share with you a video that I made with the pictures that I took over the weekend (with the help of my sisters, Cindy and Joanne). It has been the most emotional yet happiest weekend ever! Tears were falling as I was taking pictures of the event. Seeing the little kids running the marathon and having the sponsors as well as the celebrities run with them. It was such an amazing event! Steve Fiorina from San Diego's Channel 10 News was the celebrity that ran with Ryla. I was so happy that Ryla actually ran the whole way! I thought either she wouldn't walk at all or just halfway... but not only did she do it herself, she actually tried running it! My goodness, the feeling of it was undescribable! Then seeing other people who don't even know Ryla, just screaming, clapping and cheering her on, was so breath-taking! It was definitely my best Mother's Day gift ever!!

BIRTHDAY PLANS

Ryla's birthday is coming up and we've made a decision on throwing her like a pony ride/petting zoo theme. You can actually have them come to you so we have to scout for a location as well as manage the expenses. If it doesn't turn out the way we hoped for, we'll just probably go to the Ranch that we went to on Ryla's Send-Off Party from the Make-A-Wish Foundation. She really enjoyed that day! She didn't want to go home!!! She loved every minute of it! She wasn't scared to ride the horses either!!! I'm so amazed on how brave she was that day!!!

HECTIC WEEKEND

This coming weekend is going to be hectic for all of us but in a fun way. The hectic for me will start tomorrow because I have to run a lot of errands and get everything situated before the Saturday. Saturday will be a fun-filled day for Ryla. We will be having the Celebration of Champions as well as going to the Padres game for the first time! On Sunday we will be heading out to Sea World in the morning for the American Cancer Society's Courageous Kids Day and that will be an all day event! I know it doesn't sound much but we will be pretty much out of the house this whole weekend!

ITS BEEN ONE YEAR....

It's Been One Year...

I can't believe it's been one year since we rushed Ryla to the hospital. This year has gone by so fast but the feeling and the pain is still fresh as if it just happened yesterday. In two days, it will be the one year mark of her diagnosis. To let everyone know, Ryla has fought bravely as she continues to progress everyday! I'm still holding my breath for we're only half-way there. Yes, she is still doing chemotherapy for another year and 2 months. After July 13, 2008 I can finally breathe and my baby girl will finally get to live a normal life again. Everyone is invited to her "No More Chemo and her 5th Birthday Party"! Thank you for those who has stood by us throughout this whole ordeal. We cannot thank you all enough for the love you've given to our Little Super Girl.

BIG EVENTS

There will be a couple of big events for Ryla this month. On May 12th, Rady Children's will be holding a "Celebration of Champions" at the park here in San Diego. It's sort of like a little fair/olympics. All of the cancer patients will run holding a torch and pass it on to the next Champion. Those who are younger like Ryla of course will be carried by either mommy or daddy. After that event, they will be taking us to the Padres game! It will be the first time we EVER went to ANY GAME! They will hold a pre-ceremony at the Stadium to honor our little champions! Yes, we actually get to walk out in the field! Then the next day we'll be heading over to Sea World, for the American Cancer Society's Courageous Kids day. They will have lots of games and food for the kids to enjoy and the mothers as well since it will be Mother's Day. My best Mother's Day gift would be seeing Ryla and Alex having a blast!!

Alex has finally gotten one tooth growing in the back! Yes, he's got a big boy tooth in the back now! At first when he opened his mouth when he laughed, I thought it was like a piece of food that was stuck to his gums but when I took a closer look at it, it was the big teeth in the back! No wonder he's been moody lately.

Ryla's 1 year anniversary is coming up really soon. I can't believe it's been a year since she was diagnosed. Just another year left.. Then everyone is invited to Ryla's 5th birthday and No More Chemo Party!! I think I'll be combining the two events under one party since it'll be rather close to each other. It'll be held more than likely at the end of July! I can't wait!!

BEING SICK

Its so difficult when both kids are sick. Yes they've definitely caught something. Some type of cold or maybe it has to deal with the weather. But they've got the sniffles. They're on Dimetapp right now and it's been helping a lot. So far no fevers! They're still active and everything it's just they got runny noses when the Dimetapp starts to flush out of their system so I have to give it to them exactly every 4-6 hours. So nothing really to worry about. They still got their appetite. Ryla's attitude this week of Steroids is actually one the best ones so far. She's not attached nor bossy like last month! ;)

DR. APPT

Well her Spinal Tap went well today. She actually didn't cry this time when they put her to sleep. The trick is to have her watch her Disney movies on the lap top as they wheel her bed in the procedure room. She's busy watching the movie that she just falls right to sleep! It's getting a lot easier for me to deal with it. The only thing she's still not use to getting poked through her port. I honestly don't think she'll ever get use to it. Her counts look great by the way! All her counts are in the normal range except for her white blood cells. They're slightly low but she's still okay. She's developing the sniffles though. Her and Alex and I just hope it doesn't get worse than it is now. She also started on Steroids again. Yikes.. I hate it when she's on that.

SUNDAYS

Every Sunday (and Thursdays) we always go to church. Never have we ever missed going to church except when she was hospitalized of course. Ryla wore her white and blue flowery dress today. I just can't believe on how TALL she is! She looks like a giant compared to all the kids in her age group! She definitely would fit with the 5-6 year olds, perfectly! Yes Ryla is so tall! I'm 5'4 and she's up to my ribs, no joke! Those you have met Ryla in person knows what I'm talking about. People are surprised when I would tell them that she was only 3 years old. There was this little girl who was going to be 10 years old this year and she happens to be maybe about half an inch taller than Ryla! Hard to belive huh? Yeah I would find it hard to believe too but it's true! ;)

NEXT WEEK

Next week, Ryla will have to be fasting in the morning because she will be getting a spinal tap, then Vincristine, then she will start her 5 days of steroids too. My poor baby girl is going to go through a lot next week. They're gonna access her through her port. I really hate it when they have to poke her like that. I wish there were an easier way. We're almost on the halfway mark! I can't till this year is over!!! I can't wait for Ryla to live a normal, happy life! ;)