So much sadness..........

This week has been really hard on the Brain Tumor world several children have passed away leaving a whole in those families forever. It is so sad that some families have to go through such trials. All I can think is that they must be so strong.......

This little girl has just gone home on hospice......They family is obviously heartbroken as am I. It just breaks my heart that yet another child will be leaving this earth because there is not enough funding to find cures for these cancers........We can all change that, post a link to this blog, go to these families websites, spread the word, and give, GIVE, GIVE....................

Our little angel Amanda Arianna Villalona was born on August 28, 2007 weighing in at 6lbs 12 ozs and 18 inches long. Since the blessed day that she arrived, she has filled everyone around her with endless love and happiness, especially Daddy, Mommy and her big sister Jaslyn Marie...
She tends to love attention (but what glamour girl doesn't?) and pretty much laughs with everyone that plays or talks to her. The best word to describe her is HAPPY and we could not ask her to be any more full of life than what she already is. Her courage and strength is what gives us the fuel to survive each day, not to mention the many blessings from our Heavenly Father above!
On 12/02/2007 we discovered a brain tumor that required immediate medical attention resulting in a surgery that took place on 12/04/2007. The posterior fossa tumor was 3.6 cm & was near the cerebellum - on the brain stem; 95% was resected and we were therefore thankful for a very successful surgery!
Thereafter, on 12/05/07, we were informed that the tumor was malignant. Words can not begin to express how our world tumbled upon us; and it was at the moment that we began to pray for the pathology report to come back with the most treatable tumor...
It was't until eight days later that the pathology report came in, diagnosing our little angel with AT/RT (Atypical Teratoid Rhabdoid Tumor); One, if not the most agressive, rarest & untretable cancers existing amongst infants today... Everything began to play in slow motion for us and digesting this news or better said the reality of it all just seemed impossible (and sometimes still does)!!!
January 4th 2008 thru September 2008 she was treated with "IRS III" protocol (aka the ATRT protocol from the Dana Farber Harvard Cancer Institute)...along with 30 sessions (6 weeks) of radiation-therapy at the University of FL Proton Therapy Institute that took place during February 2008.
We had no choice but to stop said protocol during the month of September as unfortunately our little princess relapsed 3 months before ending treatment. Our extraordinary NeuroSurgeon (Dr. Ian M. Heger) achieved total gross resection of the 1.7cm tumor that was located in the Sylvian Fissure area of the brain.
During the month of October 2008 we began her new chemotherapy protocol which consisted of "Irinotecan and Avastin," and we additionally began her 28 sessions of focal radiation which was completed by December. Said chemotherapy protocol was scheduled to end in October 2010, but unfortunately we received the devastating news yet again that our angel relapsed during the month of May 2009.

Due to the disease metastisising this time we have no medical options left to treat our princess. The two new tumors which are small in size are located in the upper left lobe of her brain and in her "T5" in the spine. Enhancement of the lympho-meningis show in her MRI through out most of the remainder of her brain and spine, to include her nerve roots and this is one major obstacle we can not overcome. Radiation of the spine is not an option for a child under the age of 3 yrs old (or the remainder of their life will be in a vegitative state), and where enhancements of cells show in the brain she's already received her maximum dose of radiation for life. Surgery can accomplish removing the tumors but there's no possible way to get to these microscopic cells; and chemotherapy will obviously not work by itself so we decided to not continue putting her through that.
As we are now home under Hospice care we still continue hoping for the miracle of tomorrow, for strength to accept our Heavenly Father's will, and for peace & comfort amongst all things. We will allow Him to carry us thru what awaits us knowing deep within our hearts our daughter will always live!!!
We want to thank each and everyone of you for your unconditional love & support and hope the Lord will repay all of you with triple the blessings and happiness!
With much love always!Carlos, Melissa , Jaslyn Marie -&- Amanda Arianna Villalona

You will need to create and account to visit her site but it is free and then you can follow most of these children. They need it. They need our support..

http://www.carepages.com/carepages/OURprincessAMANDA

PLEASE BECOME A FOLLOWER OF THIS BLOG AND HELP CHANGE THE LIVES OF THESE CHILDREN....

It is with a broken heart and tears that I write this update. Miss Sadie Huish passed away this morning at 7:11am. I have really grown to love this family over the last year and am just heartbroken at the news. Though she was diagnosed with a terminal brain tumor the family still held out hope for a miracle but were comforted in knowing that if she went to Heaven they "WOULD" see her again. Please, PLEASE go to her website and leave condolences for this wonderful family.

This beauty must be needed so desperately in Heaven!!!!!

PLEASE GO TO HER SITE OR THE PEDIATRIC BRAIN TUMOR AWARENESS SITE TO READ HER PARENTS JOURNAL ENTRY, IT IS VERY SPIRITUAL.............
http://www.sadiehuish.blogspot.com/
http://pbtawareness.blogspot.com

Ravyn...............

Ravyn's Mother's Last Update on her website:

June, 24, 2009

Sorry I haven't been able to update sooner. My hands have been so full with Ravyn's rapid decline. She is no longer "happy" because I can no longer allow her to drink thin liquids or eat anything with any type of texture. We are having to puree everything like baby food and Ravyn can't stand it! She fusses a lot. It's like having an infant all over again, only she is much heavier!! lol I can prop her up with pillows, but she can no longer hold her head up either. It's so hard to watch such drastic steps, but of course it's to be expected and I knew it was just a matter of time. She is starting to sleep some during the day, which according to the hospice book is to be expected as well. It's the bodies natural process to shutting down. Her breathing patterns are still fast, and she still experiences some episodes of apnea. This is usually when she starts crying...it causes her to stop breathing for a few seconds. I usually have to remind her to calm down so she can breathe easier. She also gets it when she is lying flat in the bed. I'm having to suction her nose/throat/mouth out a couple times a day. This is also due to the swallowing being almost paralyzed, so she is not handling her own secretions very well. The hospice nurse was out today and said that she had a little bit of rattling in her lungs. So, we have gone from several "stable" days to a drastic decline. I'm am still very grateful to have her in my arms every night when I sleep. This is something I will miss when she is cart-wheeling her way around Heaven. Ravyn has slept in my arms since she was born. She did sleep in her own bed with Lexi, but if she slept with me she had to have my arm under her head. Even now she has her head against my shoulder. She has to be touching me. It's comforting to her. Vanessa and Alexia have been saying "I love you, Ravyn" a lot more to her in the past two days. I know they see the rapid decline too, but I just try to keep the lines of communication open and hope that we can all make it through this with the best of intentions to use this as a learning experience and honor Ravyn's life in the future. I know there will be sadness, and an emptiness that nothing else can ever fill. I just hope during our sad moments, we can remember how much better off Ravyn is in Heaven. I keep reminding myself of that. I hardly cry because I am so busy trying to be strong for the girls, but it's becoming more of a challenge as I see my innocent baby girl slowly slipping from this Earth. There is no easy way around this. And although I feel I am a pretty positive person, it's hard to feel happy. That's why I picture God carrying her in his arms and introducing her to all his other precious children that are with him. Alexia is upset because Ravyn is going to get to hold Pepper first ( her pet hamster that died last year), and she gets to "meet all the famous people like Martin Luther King, and George Washington and all the presidents." The more Alexia thought about it, the more she wanted to go to Heaven RIGHT NOW!!! I'm glad she is yet again excited about going, but I told her it's not her time yet.


I am heading to bed now to get some sleep and count my blessings. I thank God everyday for the things that I have and the things that I don't. Only a loving Father would have such special plans for Ravyn and provide us with the strength to carry us through our journey here on Earth without her. I know that "some of God's greatest gifts are unanswered prayers", because selfishly I still want to hold onto Ravyn and watch her grow up, get married, and have babies as she has always dreamt about (she's always been in awe of pregnant women). When you have twins everyone always says "double trouble", but I see it as "double blessings". I have always known that, but now realize the blessings are that I have had the opportunity to be their mommy, and I have identical twins and will never have to wonder what Ravyn will look like growing up because of that.

THIS MOTHER AMAZING ME, PLEASE GO TO RAVYN'S WEBSITE AND LEAVE THEM SOME ENCOURAGING WORDS..........................

Liam is now an Angel...............

At 4:24 this morning, our beautiful Liam passed from the loving arms of his parents into the loving arms of his Saviour.

"You know the thing about angels Mommy? 'What?', I replied. Well,God makes you then he puts little girls and boys on earth. Angels without their wings. He watches you grow,how much you love God and how nice you are and your wings grow just a little. When you become everything He wanted you to be, you die and go to Heaven and then he gives you your full angel wings...and you get to keep them forever. " ~LiamYou did it, son.

We love you!With love and thanks to each of you as you have walked this journey with us. As always, we give every glory to our Creator, the one who promises we will hold our sweet boy again one day.

With love,Maria,Ryan,Maeve, Angel Liam, Owen and Aidan

PLEASE GO TO HIS SITE AND LEAVE SOME LOVING WORDS FOR HIS FAMILY........

Liam needs prayers......

June 19, 2009

Hello Everyone,Just wanted to ask for some extra prayers today. Liam has been vomiting since early morning. Unfortunately it is not typical vomiting and we are trying to figure out just what the cause is. So far the meds we have given are not helping. We would like to ask for some prayers that whatever is causing all of this will resolve soon, that we can find something that will help manage this and Liam can have a restful afternoon.

Thank youWith loveMaria

To find out more about him and his condition please visit his site and give his family some comforting news.

Zac Attack........................

On June 9th 2008 my youngest of 4 children, Zachary, was diagnosed with a brain tumor - DIPG. We did our first round of chemo (Motexafin Gadolinium) and radiation. We got through the holidays fairly well. We are now doing the Avastin/Irontecan. We are still praying for our miracle and believe that it will happen.

Zachary will be starting radiation and chemotherapy the week of the 23rd. We will be traveling every day to and from St Louis as his treatments will be done as an out patient. He is very thankful for this as he can sleep in his own bed and see his brothers, sister, family and friends every day.

They told us the side affects should not stop him from swimming and playing ball. He was very excited to know that he will be able to continue playing sports. As anyone that knows Zac, knows that sports are very important to him.

We would like to thank everyone for their support and help through this hard time in our life. With your thoughts and prayers and Zac's awesome positive attitude we will get through this! We know the odds, but that doesn't matter to us. We know in our hearts that Zac will win. He is too special not to. Even as bad as he knows he has it - he continues to be the same giving and caring little boy he has always been. Keep us in your prayers.

When we know more details I will post more information.

We found out we are headed to St Louis on Thursday the 19th at 8:00 a.m. We will be getting ready for his treatments. We should be home Thursday afternoon. The treatments will begin either Monday or Tuesday.

ZAC IS LOOSING HIS BATTLE WITH THIS AWFUL BRIAN TUMOR. HE LIKELY HAS DAYS LEFT ON THIS EARTH PLEASE READ THE LATEST UPDATES:

• Thursday, June 18, 2009 7:50 AM, CDT

  Zac is still hanging in there. He is sleeping more, he only woke up a couple times yesterday and for not any length of time. He has been so strong, he's an amazing little guy.
  
  The storms last night were scary. Meagan, Tyler and Brandon were right in the heart of them coming back from Tyler's game. Thankfully they were with Jenny, Jill and John and they were able to get to a safe spot!! Here at home Jason and I had a plan if needed to get to a basement. We were told not to move Zac unless it was absolutely necessary, so we had my purse on his bed with the medicine pumps, extra bag of IV fluids and had the oxygen tank in the van ready to go. Luckily our house escaped the danger of tornados!!!
  
  Tyler is suppose to have another game tonight at New Bloomfield. Not sure how there fields look after last night.
  
  Keep praying for our miracle. It can still happen! Please don't forget all the other sick children. Not just the DIPG kids, but all the kids with cancer and illiness. No matter how big or small, you never know.............

• Tuesday, June 16, 2009 8:45 PM, CDT

  Zac is still holding his own. He keeps amazing us. He was awake today for over an hour today. Tomorrow will be a big day, when the nurse gets here we have to change everything out, so please no phone calls or visitors between 12:00 and 1:30 if possible.
  
  We want to thank our church members and friends for the meals that they have been bringing over.

• Tuesday, June 16, 2009 10:02 AM, CDT

  Zac is still holding his own. The good Lord is holding him and keeping him safe. All we can do is be here for him, hold him, and pray for the best thing for Zac, healing.

PLEASE GO TO HIS WEBSITE AND LEAVE SOME ENCOURAGING WORDS FOR HIS FAMILY!!!!!!!! HIS LINK IS TO THE RIGHT!!

Miss Sadie...............

I know I have featured her in the month of May but this family continues to impact my life with their strength and faith. Though Sadie is likely in the last days of her life here on Earth they remain upbeat and strong!
This is the last entry on their blog:
Tuesday, June 16, 2009

The faith and testimony of Miss Sadie...
Sadie is holding her own. She enjoyed a pretty good weekend, yet has been a bit more mellow the last couple of days. The last couple of nights she has had a hard time getting to sleep, but sleeps good and long once she is there. She also seems to be getting more agitated and frustrated with her little body, in the most tender-hearted of ways... just a bit emotional. In regards to pain or discomfort, it's occasional and from the spasms in her arms, but the medicine we give her is able to relax her pretty quick. Her breathing issues seem sporadic, and with her checkup yesterday the nurse couldn't hear any fluid on her lungs. So we're thankful she seems more comfortable in that regard. She discovered Rocky Road ice cream over the weekend, and that has become a staple food. She woke up from a late nap around dinner time, and not long afterwards, though she looked alert and rested, she said she wanted to take a nap. We got her ready for bed and here we are. She's just fell asleep after a long period of trying to get there. I hope she is finding much happiness and peace when she is sleeping... seems she was excited to get back to the shut-eye. We went on a walk yesterday, colored today (we shared hands), read a lot of books... she knows what she wants and we do it.We continue to have many visitors and help and so appreciate it. We have been graced with the love of our siblings frequently and other extended family have come by. Zac and I have a huge and wonderful blended family between us, so there is a lot of love around! It has been humbling to have some of our grandparents (Sadie's great-grandparents) make the trek out to our home... we aren't exactly around the corner from them all, and I know how much they enjoy driving, so it means a lot. Also, my most sincere thanks for your prayers for Grandpa Morley; he passed away peacefully on Sunday afternoon... lived a long and great 94 years.
So I'll post some pictures from throughout this week later on. I felt like I should share some of Sadie's drawings with you... not sure why... they are sure special. I have saved tons of Sadie's drawings since she was diagnosed, as she became a drawing queen during this timeframe. As you know, we strive to rely much on our faith and beliefs, particularly in this time... these give an added measure to holding fast to that faith. These particular pictures amazed me and softened my heart when she first drew them; we never knew what she was drawing, and she wouldn't show us until she was finished. So to say these soften me to mush at this time is an understatement. She has a giant love for the gospel and particularly our Savior. She has strengthened my testimony through her own... and makes me strive to have the faith she does. These may depict to you the spiritual giant in that little body... wise beyond her years. In a time so extremely hard, these bring a boost of sorts. With Sadie's permission to post these, here you go. Thank you for your continued prayers for Sadie and her comfort.

Please go to her blog and look at all the cute drawings by Sadie about Heaven and walking hand and hand with Jesus.
Her blog address is in the side bar! Go leave them a message!

Dedicated

This Blog is dedicated to all the children who are battling or have lost their battle with a brain tumor! The goal of this blog is to raise awareness and help raise money to find cures. Each child that is featured on here needs our help. From a donation to just encouraging words to the family. Please help!
After what I have learned from my own experience with my son I hope that I can help other families!