Sunday, September 27, 2009

Eat at Chili's...........



Monday, August 31, 2009

Urgent Prayers for Lucas Nelson

This gorgeous little boy was diagnosed two months ago with ATRT. He had one tumor in his spine. He has been given high dose chemo at Primary Childrens Hospital. When they did an MRI things looked good, the tumor was responding. Then all of the sudden he seemed to be in pain. Another MRI was preformed two weeks later and the cancer had spread throughout his spine and into his brain. Lucas was sent home.

This is the latest post..

Lucas slipped into a Coma sometime in the afternoon yesterday, Sunday, as he was being held by loved ones. Our hospice nurse came out last night to confirm his unresponsive state as a Coma. We are grateful to all who have come to visit and as always to all those who have been Angels to us throughout Lucas' struggle. Our faith is strong, but our hearts are broken. We feel a calm assurance that Lucas will be fine and soon will be with his Father in Heaven and his Savior. We lovingly and respectfully ask that visits be limited to immediate family and please understand that we would love to visit with everyone, but our time with Lucas seems limited. We appreciate your continued prayers for our family as it has given us much strength and support. I wish we could give more personal responses to all of your comments and acts of kindness, please take this as our way of saying thank you from the bottom of our hearts.
Lucas is a very special boy sent to unlock the love in people's hearts and teach us lessons we might not otherwise learn. It seems his mission is drawing to a close. We love you our friends. Thank you.
Please go to this site and leave some messages....

Sunday, August 23, 2009

Angel Llimaya...................

Forever in our hearts

Posted Aug 17, 2009 4:57pm

I am sorry to inform everyone with the news of Maya's passing. Yesterday, things changed so quickly. Her sodium levels were low which caused her to have seizures. We kept trying to correct it but it seemed that it was not holding her. We decided to stop trying and shut off the monitors and enjoy our moments with her. At this point her oxygen level had began to decrease. We sat there for hours and hours as she gasped for breaths. She looked comfortable, pain free. She continued the morphine drip for pain and was given a few medications to help prevent seizures. It was at the point where we wanted her to go in peace. We were in the room staring at each other as we waited and waited for her to go. She still wanted to fight. This morning she did not lose her battle to cancer. She stuck cancer right through and held her head high! She was in the arms of many loved ones. She passed away at 8:40 in the morning. She slept right through. Services will be held on Wed. We will repost for details. Thank you so much for your support. email us suggestions as we start our celebration of her life.

Her Bio...............

It always strikes as a shock that all can change in the matter of seconds. In our case, just one moment.Llimaya was hospitalized for the first time on November 2nd, 2008 for a tumor in her brain. It is located in her right cerebellum ( the part of your brain that controls the function of your movement). The tumor affected her central nervous system causing damages to some of the abilities she used during her everyday life. They placed her on a steroid to help reduce the swelling of her brain. Thursday November 6th, 2008 there was a surgical goal for the benefit of this severe scare. The Neurosurgeons were performing a biopsy and were in attempt to remove enough of the tissue from the tumor to release pressure off of the brain. The surgical goal was met and they were able to remove enough of the tumor to keep her safe until further treatment. Although, it was not a total resection, it was enough to buy time for us to enjoy. The diagnosis was ATRT, a highly malignant tumor that appears in pediatrics. She was discharged and able to go home after the surgery. She enjoyed being home with her family and made use of her time with DORA THE EXPLORER! We returned prepared for our journey and our fight. She has multiple sites. The more sites the harder to treat. She has about 3 tumors that you could measure and other what appears to look like a spray painted coating of tumor cells that could actually form a solid mass. Cancer will be administered through her port a cath (central line), double lumen (central line), and ommaya reservoir ( catheter in the brain that lets chemo flow through your cerebro spinal fluid).


Tuesday, August 11, 2009

Angel Alexa Brown................

Thursday, August 6, 2009 5:58 AM, CDT

Family, loved ones, friends and those who have prayed so faithfully for Alexa.

Alexa is watching over all of us from Heaven this morning. She went home to be be with Jesus this morning at 4:00 a.m.

God's blessings and peace be on all of us as Alexa and all of us start a whole new journey.

I know her words, if we could hear them, would be, "Thanks for loving me. Don't worry. I'm good. I found Grammie, Pop Pop, Pa and T.C. I will watch over all of you. I love you more than you'll ever know."

We can all rest easy knowing that Alexa will forever be protected by Jesus and a host of family members that have gone on before us.

Love to you all,

Amanda, Abby, Ethan, Wendy, Warren and special love from Alexa

I know I am late with this post but this wonderful family could use some encouraging words. Please go to her site

Tuesday, July 28, 2009

2 New Angels................One Deadly Tumor DIPG!!!!!!!!!

Caleb Spady.....................

First Breath in Heaven

Posted Jul 22, 2009 10:23am

Tuesday morning around 11:30 am CST, while Ken was giving Caleb a bath, Caleb drew his last breath on earth and took his first breath in heaven. At that time, Kim was in surgery due to complications from her earlier surgery. She is resting now at Integris Baptist Hospital and is expected to have a full recovery. The Spady family is at peace. They are grateful that everything the tumor took from Caleb has now been restored to him.

A friend of Kim’s wrote a song that brought her comfort. Its words describe the hope t

hat has sustained Caleb and his family through these difficult days.

Though He should slay me, I'll trust in Him.
His way is never wrong.
In darkness I will praise His name.
He is my Strength and Song.

For He knows my fiery trial.
He knows the way I take.
His glory shall be seen,
And He makes no mistake.

God sees my ways and counts my steps.
He hears my silent cry.
My heart is fixed; I trust in Him.
I need not ask Him why.

My faith and hope are in the Lord,
My Refuge and High Tower.
In quietness and confidence
Shall be my strength this hour.

For He knows my fiery trial.
He knows the way I take.
His glory shall be seen,
And He makes no mistake.

Brianna Sharp........................

She Finished Strong!!

Posted Jul 25, 2009 8:47am

"I have fought the good fight, I have finished the race, I have kept the faith." ~ 2 Timothy 4:7

Brianna passed away at 6:12 this morning. She finished the race strong….living up to the meaning of her name and her cross country motto. She was surrounded by her loving sister, parents, and step-parents.

We felt from the day of diagnosis that Brianna was here to serve a bigger purpose, especially if God chose her to bear such a heavy cross. If a child cannot live out their dreams and God chooses to call them home, we must know His plan is perfect. She always put others first and even though I told her it is o.k. to be selfish for once in her life…to let go if she wants to be out of pain, she held strong for everyone else. She held strong and allowed her family and friends to come share their love with her and she shared her love and so much more. Though she could not speak, could not move, and struggled to open her eyes for even a second, she would gather the strength to let us know how much she loved us. She wanted to bless us with a few more squeezes of the hands, a few more words, and to show us her beautiful blue eyes a few more times.

Though we don’t know all the plans He has for her, we do know she accomplished more in 13 years than most people do in a lifetime. She touched the hearts and inspired so many people, including her parents!

Because of Brianna, family relationships have healed, parents and children cherish each other like never before, and people grew in faith. Brianna would want nothing more than for people to be happy, but we hope she served a greater purpose by displaying the hope, faith and love which inspires people to seek out the little miracles and many blessings in every day. She did accomplish her primary goal in life. Especially as Matt, Maria, Bob and I were able to give her what she always wanted…peace in her family. She was not going to leave until we reconciled our relationships. Only hours after she heard it from everyone, she began to let go and she was lifted up!

We decided if she cannot live out her own dreams (hairdresser, chef, artist, marriage, kids) we would make at least one dream come true, which was to have her family together with her and at peace.
Brianna is lifted up, healed in mind, body, and spirit. She is donning beautiful angel wings, and I imagine is being tugged at by two little boys who are asking her to play with them. God Bless Brianna…her Irish eyes are smiling down on us!

May the road rise to meet you.
May the wind be always at your back.
May the sun shine warm upon your face.
May the rains fall soft upon your fields.
And until we meet again,
May God hold you in the hollow of His hand.

Dance as though no one is watching you,
Love as though you have never loved before,
Sing as though no one can hear you,
Live as though heaven is on earth.


Tuesday, July 21, 2009

Update on Half of the Warriors.....

Alexa Brown continues to hang on and fight for this last few days of her life. Her family is thankful for each extra day they are blessed with. Please pay for a easy transition to Heaven for her.

Alexis Agin continues to do well!! She is diagnosed with DIPG and has already beaten the odds with how well she is doing. She is do for a MRI soon so please pray. Visit her site, her Father has a profound way with words...

Alyssa Dennewitz is doing amazing! Last MRI, in May CLEAR!!! Her mother has a really strong post on her site right now go read it..

Amber Veale is struggling with her chemo and in and out of the hospital.

Angelica Hurley had a stable MRI in May and now only has to scan every 6 months...

Annette Maxey is struggling to build back up her body and chemo has been delayed.

Ava Beth has done extremely well with her bone marrow rescues..

Avalanna Routh has RELAPSED WITH FEW OPTIONS LEFT.. Her family is obviously heartbroken and she is their only child.

Avery Gallagher is enjoying life at home.

Bishop Mikaelian just got back from her Make A Wish trip and is due for an MRI this week, prayers needed.

Brianna Moore has been having very strong seizures and though the recent MRI was Clear they are still worry some. She has been doing pool therapy and loves it.

Brook Johnson is well a miracle. She has survived relapsed ATRT and is home enjoying life and living cancer FREE...

Caden Safer is doing well and has started on Homeopathic medicine to try and rid is body of his cancer.

Caitie Army is struggling with her chemo, prayers please.

Caleb Gulizia had his MRI/MRA on July 7 no results yet.

Carson Leslie has been accepted at St. Jude for a trial medicine after his family was told there was nothing left for him.

Clay Dixon has an MRI coming up and has been experiencing some right sided numbness of his face please pray.

Cole Carpenter is considered cancer free. He just had a surgery to remove what was scar tissue!!!

Darcy Cassidy is still in the middle of intense treatments but seems to be handling them well.

Dasia Atkinson is a MIRACLE and has completely beaten the odds with DIPG. Her tumor continues to be STABLE.

Delaney Starcher is scheduled for her MRI on the 23rd. All the prayers would be helpful as she fights this terminal tumor.

Emerson Crane his last MRI showed a decrease in size of tumor!!! YEA!!!

Evan Pertile has MRI's today. Please pray for clear scans so he can go home..

Gianna Gillian has been taken off of intravenous feeds and has started eating on her own.

Grant Tatro just had clear SCANS!!!

Grayson Anderson just had surgery and has had to go 7 days with no food.. Awful.

Hailey Ann Trainer is in Florida receiving Proton Beam Radiation. She is doing extremely well and her whole family is there with her.

Isaac Chatfield is in the middle of his chemo.

Jake Dambrauskas the miracle boy is struggling with his liver functions. He has become jaundice and doctors are scrambling to try and fix it.

Joe Slater is doing so well they just took his central line out!!

Jonathan Mullis is in the middle of his chemo.

Julia Pinotti just got a STABLE SCAN......

Justin Hutchins is in a hospice type hospital and sadly declining.

Sunday, July 19, 2009

Meet Maryn..............

Maryn Nicole Cella, born on October 20th 2005 was diagnosed with an inoperable brain tumor in June, 2009. The name of this tumor is "Diffuse Pontine Glioma". Maryn's parents were told that she would have 9-12 months of life even with radiation therapy.

Maryn and her parents are moving mountains to find a miracle and save their sweet angel. They are blessed with a community of generous neighbors, family members and friends willing to pitch in and help in this time of need - and they are thankful to everyone!

Maryn is an incredibly brave child. Each day she goes to radiation therapy, she has a smile on her face and enters the radiation room to be sedated with little or no fear. We are amazed at her perseverance and willingness to think of others even when at the hospital.

Maryn epitomizes what we should all try to be with the way she is caring for others and putting others concerns first.

Maryn loves little stuffed animal toys and to play with her four sisters. Maryn also likes to watch her favorite cartoon called, "Calliou". Maryn loves the color pink and is always wanting to color in her coloring books.

Maryn and her Mother have gone "RAW" in hopes of not feeding this terrible tumor. Please go to this site and donate. There is also a link to her mother's blog which gives up to date information on how Maryn is doing.

Friday, July 17, 2009

Zac is now an Angel.......

Wednesday, July 8, 2009 9:33 AM, CDT

Zac earned his wings this morning.

I'm not sure how or what to say. Right now I'm completely numb. Sorry we missed many of you either via phone or visit. Jason and I hadn't slept in quite a while and we crashed this afternoon. I know my little man is up and running, playing baseball, riding Blackie and Babe and playing with Jake right now. It is my own selfishness that misses him so terribly bad. It still does not feel real, it's not happening........Not my little Zac.We were so blessed to have him in our lives. He taught everyone so much. I can not wait until the day I get to see him again. It will seem like forever for me, but only a blink of an eye for him. We are planning on having the services at the Baptist Church in Fulton next to the Library. We are thinking Sunday afternoon/evening for the visitation and Monday morning for the service. As soon as we have more information we will let you know.Please keep all the other families in your thoughts and prayers tonight. I know there are a lot of hurting families as our DIPG group has lost so many children the past 11 days. I'm so thankful for the great friends and family. We want to thank my mom, Jenny, Jill, and Jim for being here with us this morning. Zac was surrounded by his Moms, Grandma and Daddy Jason when he went, God took care of him and he went quick and peacefully.

Ravyn a new Angel....

Ravyn Finch.........

Saturday, July 11, 2009 3:51 PM, CDT
Today Ravyn Finch earned her angel wings, now she flies around with Jesus and freinds .She was so sweet and fought this battle as long as she could. This sweet child touched everyone she met . My faimly and freinds are going to miss her and love her very much Big sister VanessaWe are going too miss Ravyn verry much,but i can see her now doing kartwheels and flying with jesus and our other loved ones.she touched each and every one of our hearts.I LOVE YOU RAVYN!!

Big sister Vanessa
We are going too miss Ravyn verry much,but i can see her now doing kartwheels and flying with jesus and our other loved ones.she touched each and every one of our hearts.I LOVE YOU RAVYN!!
Cousin Kambrie

Tuesday, July 14, 2009

Fact of the Matter.............

Everyone always asks me, "Aren't there any children that live? That do okay?" Yes there are but it is really difficult. If they are lucky enough to survive and be considered NED or No Evidence of Desease, the relapse rates are very, VERY HIGH.
There are some children who just touch your heart. I have found this to be the case with several of these children. I talk via email to their parents we pray constantly for all of them and when they get bad news I feel it also. When Sadie died I was heartbroken, in fact I still am. I could care less about the FREAK Michael Jackson, but a beautiful girl with such a pure soul went to Heaven that day and to me, that is more important.
There have been a lot of new children diagnosed in the last week, I can count 6 children. I will feature each child on here for everyone to help support. One day at a time though.

One little girl that has captured my heart is little Avalanna Routh. She has the awful cancer ATRT but was doing so well. I was so happy! She was cancer free and away from all hospitals and treatments. Though sadly she just had a MRI that showed after 2 months of NED, new tumors in her brain :(
I featured her in May but here she is again:

Saturday, July 11, 2009 6:32 PM, CDT

We truly thought that the worst of Avalannas illness was behind us. We had an MRI yesterday and we are heartbroken. We woke up yesterday morning, hoping and praying for a clear MRI. We felt that if everything looked good yesterday, we would be fine forever. The MRI was bad - Avalannas cancer is back - in the brain. We are devastated. The doctors are surprised and so saddened as Avalanna looks and acts fabulous.

There are not too many options left - the doctors are not optimistic that we can treat this. We have meetings on Tuesday to discuss options but we need a miracle now.

This is hell on earth - I thought this nightmare was over - it has only begun.

Monday, July 13, 2009 8:16 PM, CDT

We had many discussions / meetings in Boston today - each one more difficult than the one previous to it. We are now waiting until Wednesday to do the further tests and by Friday, we should have some plan in place.

The tests on Wednesday are very important. At this point, confidence is very low that Avalanna can be cured. But good results from tests this week, may give us some handle on what we are dealing with.

Simply, we need a miracle. We need prayers to all the angels and saints. Another dear friend, whose daughter, Brigid, has also relapsed told me that Mother Tereasa needs two more miracles to become a Saint. Lets pray that Mother Teresa use her powers to cure Avalanna and Brigid.

I dreaded the possibility of a relapse. I thought about it but I really felt that we had beaten the odds. This is devastating. No words can describe how we feel. Nothing in life matters - without Avalanna...........nothing makes sense.

Please pray for this Miracle,
Love Aileen, Cameron & Avalanna.


Monday, July 6, 2009

Kate McRae..........

Kate's Story............

Monday June 29th began like every other day, and ended like one we could have never imagined. Our daughter Kate was taken to the dr. for tremors in her right hand. We proceeded to Phoenix Childrens Hospital for a stat CT of her head. At 5:30 I, Holly, Kate's mom, was taken into a room alone and told Kate had a massive tumor on the basil ganglia portion of her brain. I called her dad and our journey has begun. One we never would have chose to be a part of, but was chosen for us, and our sweet Kate. She is now in the Phoneix Childrens ICU awaiting tests to determine what it is and how far progressed. Please, our dear daughter needs your prayers, as do we, Aaron, Holly, Olivia and Will.

Sunday, July 5, 2009 9:44 PM, MST

Do you know those days where your kids are endlessly calling "mommy"? I have had many of those in the past. My kids are 6 (she will be 7 in 2 weeks), 5 and 4. There were many times I would say "okay no one can call me mommy for 10 minutes, I just need quiet!". How many times did I complain about how it seemed like they were always pooping and I was always wiping. How I loved those days where I could lazily stay in my pjs and not wear any makeup. One word can change all of that. Cancer. Now I beg for my daughter to say mommy, just once, just for something for me to hang onto. I don't care if she screams it, slurs it, anything, just say mommy. Kate finally pooped today, in the bed (of which I was sharing with her). I was so excited to clean her up. She pooped! I kept telling her how proud I was of her. Now I rejoice that she poops, the surgery didn't effect that. As far as pajamas go, people here in the PICU might believe that it's possible I don't own any clothes. I would love to get out of pajamas. Just don't feel the need most days. Things change quickly and forever. We can never go back. We can never again be pre-cancer days. Our lives are forever altered. Just pray we can have post cancer days. Lives after God's healing. I want it so badly for my baby. So badly for me. So badly for Aaron. So badly for Olivia and Will.Not sure what tomorrow holds. Possibly another MRI, I hope not. They are going to do another one to make sure the bleeding has stopped and see if the swelling has gone down.. (at least that is what I understood, but I don't hear a lot these days). If she has the MRI again that means more sedation and more intubation. AHHH! Please pray for Tuesday, I am absolutely dreading getting the pathology report back. I know most would think at least then you can move forward, come up with a plan. But the word, the diagnosis, one more layer of innocence torn away. Then it will be studying and hearing facts and statistics and prognoses. I don't want to.Kate is crying. I need to help her. She is trying to say a word, but can't pronounce it. Help us God. Help my daughter! Heal her body, every single cell. Preserve her spirit. Help her fight. Give her rest.



Saturday, July 4, 2009

I dare you not to CRY.....................

"Angel on Earth, Angel in Heaven" from Tiffany Huish on Vimeo.

Sadie has changed so many peoples lives in her short five years. I just think there is no was to understand why things like this happen but someday we will all have perfect knowledge. In the meantime we will cling to faith and our promise that "FAMILIES ARE FOREVER!!!"

Thursday, July 2, 2009

3 New Angels......................

It breaks my heart to tell you that three children have passed away this week. On June 22 we lost a beautiful 7 year old named Morgan and on June 30 we lost a beautiful baby girl Amanda and this morning July 2 little blondie Kira...........
Morgan's Post..............
Monday, June 22, 2009 12:53 PM, CDT
Morgan Dawn "Pookie Pookie" Kolling passed away this morning at 10:05 am.14 months from the date we found out she had cancer. She was free of pain and with her mom, dad and brother Andrew. We ask for NO phone calls yet we know you care but we need time. I will post more when we know about the service. We are thinking it will be Friday Thanks for everybody that followed her story and remember LIVE LAUGH LOVE Angela.

Amanda's Post is as follows:
Angel Wings
Posted Jun 30, 2009 7:41am
This is Adel, Princess Amanda Arianna's cousin. I wish to inform you that our Princess Amanda earned her angel wings early this morning, 6/30 at 1:47am. Viewing Services will be later today at Bernardo Garcia Funeral Services - 865 West 49 Street - Hialeah, FL 33012Please no visits prior to funeral services, the family is trying to rest at the moment.
Viewing Services at Bernardo Garcia Funeral - 865 West 49 Street - Hialeah, FL 33012From 5:00 - Midnight

Kira's Post.............

Thursday, July 2, 2009 10:58 AM, CDT

It is with great sadness that I tell you that Kira earned her wings this morning at 10:55 am EST. We know that she is in Heaven playing with a body that works, wonderful food to eat and lots of animals to play with. There are no more needles and hospitals etc. and we will all join her in a blink of an eye (Heaven time). We will miss her terribly but find comfort in the fact she is with Jesus. Thank you all for your prays and support. Please pray for the family as they grieve. Thank you so much! ReCe


Monday, June 29, 2009

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..

Thursday, June 25, 2009

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!!!!!


Wednesday, June 24, 2009


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 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.


Monday, June 22, 2009

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


Friday, June 19, 2009

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.

Thursday, June 18, 2009

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.


  • 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.


Wednesday, June 17, 2009

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!

Monday, June 15, 2009


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!