Camp Okizu-Hard To Put into Words

I wish since DJ went to Heaven that I wrote on a regular basis. I stopped writing because I wasn't sure what to share. I was going through the raw emotions of grief. I have thought about it, and it would have been very healing for me, and maybe helpful to another PARENT going through this horrible experience.  I miss my baby guy... but I realize that  it is important share what we experience.   Today many children are  being diagnosed or dying from childhood cancer. It's not anything any child or family should have to go through...

Last year we had a chance to attend this camp but I opted out. I wasn't ready to be part of the sad parents club, even though I was part of it. Last year I felt really lonely. I honestly didn't think anyone could understand. I pushed away friends and family. I kept myself as busy as I could until my health was once again swept up under my feet. This year when I received the package for camp I filled it out and sent it off immediately. I couldn't wait to get out of town, and listen  to other parents who could relate to treatments, sickness, and they too lost their sweet babies. 

We went to a bereaved family camp at the end of last month.  I can't explain what an incredible experience it was  for my family.

Camp Okizu: Okizu (oak-eye-zoo),  comes from the Sioux language and means unity, to come together, to heal from a hurt, to make whole.

The mission of Okizu is to provide peer support, respite, mentoring, and recreational programs to meet the needs of all members of families affected by childhood cancer.

For more than thirty years, Okizu has been committed to the continuing support of the Oncology, Siblings, Family, Bereavement, and Teens-N-Twenties programs. These programs are the result of a collaborative effort of Okizu and the pediatric oncology treatment centers in northern California. The specific purpose of this corporation is to operate peer support programs for children and families affected by childhood cancer, many of which are based on the community-forming nature of a residential camp experience.  — www.campokizu.org

It was a breathtaking spot...They did a wonderful job. Every aspect has been thought out. They have so many activities! We did ropes courses, zip lined, boated, shot archery, and so much more! The counselors, and staff were amazing! Lyndi blossomed:) That weekend she showed us such an independence. She blew my socks off. I am so blessed by her! She had a great time. She was able to hang out with other brothers, and sisters who had last their siblings. They all had an unspoken bond...They played and laughed all weekend long. It was awesome to see and be part of. She is excited to go back for her week long Super SIBS camp. One day she says she wants to be a counselor at Camp Okizu. I believe she will be :) 

 Lyndi walked into the bathroom and screamed! She ran out saying "monster lizard".  lol

The monster lizard. Its tail was as long as its body:)                                 ----------->

 

We had an incredible family weekend!

We had eight other families with us that weekend.  The camp can hold a few hundred people. I was pleased to find out we were in a smaller group. Each one of the families are so very special. I was blessed to be able to share in their joy,memories, and pain. I am honored to know parts of each life.  We had one couple that had lost their child not even 3 moths before camp,  another  family who had lost their child 15 years ago, and everything in between. We were able to have an adult talk time. I found it to be insightful and overwhelming. My heart just ached for each family. I hate childhood cancer...I hate cancer!  I am glad that they have established such an amazing place for kids, and families. 

Their children were so beautiful...I am blessed to know their mommies, daddies, sisters, and brothers. We can't wait to go back next year:)

One More Day

Tomorrow is my Grandma Sally's Birthday.

She went to Heaven last May.

I sure miss her...

We are going to Celebrate her day tomorrow. 

She loved sweets.

I am going to make an incredible batch of brownies.

I can't believe how fast time can go...

On another note...

I am so excited to have answers. 

Waiting isn't my favorite part.

I am praying a ton!!

I am so excited that this is going to be fixed! 

Praise Jesus! 

Now I just have to be patient. I can't wait until Wednesday!!

Thank you for stopping by:)

Enjoy your week!

Answered Prayers :)

Hello friends, family, and fellow bloggers :)

Many of you know that I have had many health issues for the past few years, or this may be new news to you. For a few years I have battled black outs, throwing up, headaches, loss of vision, loss of depth perception, and the list goes on and on.

Over time I have had many "friends", and some doctors have say that it must be the way I deal with life....

I am explaining all of this so I can share the most current event going on in our lives...

I have been having chronic non-stop headaches since The beginning of March... Actually since last April, I fight to be healthy everyday. Last April the day after Easter I had a blackout.  I had my husband, and a person I will always be thankful for, take  me to Redding Mercy Hospital. I stayed their 5 days. I did physical therapy and speech therapy. After that I was able to return home. When I went home I had to use a walker, write my words down, and did some more physical therapy. My speech came back slowly. I still stutter, and I don't always say the right words, and well who needs a memory. lol

When I came home I also had to see doctors...I couldn't remember anything other then my pituitary gland was swollen...My doctor said there was nothing to be concerned about and that I had a disease called hemiplegic migraines. I wasn't ecstatic that this would be part of my life, but I was happy for any diagnosis that made sense of these crazy health episodes I  have. 

I have had so many things continue to get worse, or have new symptoms pop up....Which blows me away because I try so hard be a healthy person. I juice, eat overall a raw food diet, and exercise when my body allows me to. I think positive, and I believe Papa God's promises! 

Sorry I am bouncing around...

We had a blast at Disneyland last month. However, it was more then my head could handle. The rides, the flashing, headaches, throwing up, all the while keeping up with my baby girl and my little brother A. I try super hard not to burden either of them with this sickness. I just want to live life to it's fullest and want to teach my baby girl just that...so I pushed myself. When I got home I was exhausted. I started throwing up daily, and basically I have to wear sunglasses everywhere I was go, even inside my home. I just thought I over did it and was having a dumb migraine again.

Then came a day where I couldn't take it any more, so I went to Fairchild Medical group to the  doctor who diagnosed me with the migraines. However he was no longer practicing medicine  there..So we went to the best place in town Linda Jo at, Deegan Family Practice.  I was all laid up in the car. She said we need to get this under control and sent me to the ER. It was the quickest and by far the best visit I have ever had here locally. LJ called them and told them what was going on. I was in and out in two hours. I had two bags of fluid, nausea, and pain medicine... I felt like I could make it through yet another day! At discharge my ER doctor tells me my platelet count is in a high range, and that I need to make an appointment with my doctor within a couple of days...A couple days after I was seen in the ER we made on appointment at Deegan Family Practice..She again blows me away...She handles her patience with such love, and attention. She is real. So I went and got more blood work done. ..Tuesday my headache was crazy out of control....Went in again. Thank you Holley and LJ for fitting me in! You both are amazing:)  After she performed an exam, and asked for a detailed background. I mentioned that last April about my swollen pituitary gland. She got  super busy and got my medical records. My blood work came back the same, so she sent it to a hematologist. The hematologist checked my CRP levels and they were extremely elevated. So Linda Jo digs....Last April when I was admitted they performed two tests the first night.… An EEG and MRI.

My EEG was clear but my MRI had shown a pituitary adenoma, which is benign. With my chronic headaches, elevated CrP levels, and many other symptoms that it is effecting my brain....Then Linda Jo was on the phone with UC Davis and referred me down. I can't express how thankful I am to her for being so diligent, and amazing at what she does. Thank you from the bottom of our hearts...

Received a call today from UCDavis and I will see the Endocrinologist next Wednesday! So thankful for so MANY answered prayers!!

I have since gotten ahold of family members, and friends before I shared this blog(If I forgot someone I am sorry)...

  I am so excited that this is fixable, just have to get this taken care of.

Thank you Father God for working ALL things out for good!

A special thanks to my husband who edited, and help me write! I love you babe!

Precious Time

This is short and sweet......

I really enjoy spending time with my husband, and daughter:) It doesn't matter what we do.. most of the time we have fun, and tons of laughter:) Time is a precious gift. Thankful for the daily growth:) Our chart, and calendar defintly keep this mama on track!

Lyndi is super crafty:) Doing projects with her is always fun:)

Enjoy your day! Hugs!

We Did It :)

Today was a very productive day...

I have to start by saying I do NOT sew. I did when I was a kid, and tried again when I was in my early 20's,. Either time I didn't have a passion to continue.lol However, I really wanted to make something special to send to kids battling cancer . The idea went into " The Cancer League of Superheros." Easy enough, right? Well as I found out there is alot behind sewing...This slowed the process for sure....

Before I went straight to making capes a practiced some basic things...Didn't even bother to take pictures of the first things I made.lol After successfully finishing a few projects, I took Mama Frick up on her offer to help me make the capes! She is very patient, always encourages, and is a great teacher:) Thank you again for all of your help!!We love you! After looking at different ideas we just went for it......

We will be getting the packages finished up, and mail them out by the end of this week:) Thank you for all for your continued support!!!

Relay for Life 2013:)

So excited for Relay for Life this year:) As many of you know I was planning on doing this last year....I didn't. I went, and left. I was still in a healing process and I wasn't ready.... This year is different!!!!

The theme for Relay for life is....drum roll please..... SUPERHEROS:) I love it! Tomorrow my wonderful mother-in-law, and I will be finishing up two capes, for two precious children. Earlier this year I started a facebook page called "The Cancer League of Superheros". We want to be able to send care packages, and custom designed superhero capes to each child that is sent to us: via facebook, email, or twitter. We have had many donations, and I want to thank you all for the support:) We will be sending off the first packages in the next week:)

So that brings me back to this amazing organzation, Relay For Life. The walk will be this year on July 20th, and it will start at 9am. It goes for a full 24 hours! Josh, and I are going to walk for the Entire time, with the exception of using the bathroom.lol Team Dylan is going to make an impact on cancer!!! Please join us spread Hope , and make some memories that we can cherish forever!!! You won't want to miss it;) If you are interested please let me know. I will get you the information that you will need as soon as possible .

We really appreciate all of your support, and love!

Blessings, and lots of LOVE, Jenn

Just wanted to share the keychains that we got each other at Christmas:) Dylan loved superheros! When he was little he had multiple pairs of superman jammies, cape and all:) Such an amazing smile....His eyes just so full of love and life:) Blessed to be his mommy! Such sweet memories:)

5 For 55

So on Janurary 5th I committed to 5 habits I would like to incorporate in my life....

1. Spend time in Papa's Presence

2. Read 30 minutes daily

3. Continue making smart food choices

4. Journal

5. Spend time inside V6

I made a daily checklist at home, and am looking forward to the daily growth...Why 55 days? It's said a habit takes 21 days to be created:) I hope you are having a great New Year so far!

Hope For A Cure

Something has been on my heart to share with everyone..We needed time. Grieving isn't a process I have ever truly allowed myself to have. So I am embracing the cheese grater on the inside moments. I sometimes cry until I can't cry anymore. I know my Angel is with me. I know he is playing with Legos and Heaven and he isn't in PAIN anymore. However I have a permanent crater in my heart... I realized Dylan would want mom out sharing Jesus's Love and being true to who I am called to be. I am not here to win Kudos from Man.or to do what they think is right...I am here to Glorify the Lord and Spread his love...

About a week before we went to Lego Land, we knew we didn't have long with our little guy. Our Dr.Partap(the most incredible Peds Doctor) told my husband two days before our trip about a doctor who specifically studies DIPG tumors. Would we consider when Dylan passed if we would donate his tumor. Josh talked to me that day..He said "babe, this is the only way we may be able to help another child, another family not have to experience what we are going though."

God had already been working on me though..a couple days earlier. I was researching like a mad woman. I was going to find the answer, the cure for my son. I ran into a news clip on youtube. Seriously social networking rocks. Her name is Danah Jewett. I am honored now to be in contact with her. Looking forward to meeting her very soon. Her son Dylan Jewett battled the same monster my Dylan did just a couple of years ago. I am posting the video clip I watched. http://youtu.be/pdFfWhQ9964 You can find Danah on facebook. She also started a facebook awareness page.. Fighting to Cure DIPG.

I wasn't ready to make a decision for that before our make a wish. I knew when we got back we had our final appointment with Doctor Partap. I showed my husband the same video clip when we were in San Diego at our resort. He said he knew what he wanted to do, and so did I.

We got home from the most incredible family trip ever! Made our final stop at LPCH. We meet with all of the Doctors and told them that we would like to donate our Dylan's tumor. I am so thankful that we had an opportunity to do this. It's not a decision any parent should have to make. That's why we decided to. It's horrible to lose your child. Then to think this beast is winning...NO..we will find a cure together.

Their have been a few families who have donated their angels tumor. I Want to thank you. Praying that we have breakthroughs and and new doors open for these incredible Doctors!

Thank you for your continued prayers, love, and support. It's been such an incredible outpouring of love. Make it an incredible day.

Broken/Spreading Awareness

Today marks 20 days since my sweet boy went to Heaven...I wish I could write you some uplifting message...I am completely broken. I have good moments Praise GOd! It's such a roller coaster.. Plus I think whoever is running this roller coaster took a break. lol We have moved..Good thing for the family. Everything I know is the four of us...Now there is three of us.. Man I can't even explain all that has been going on. I will start writing regularly next week. My husband should be heading back to work in the next week or two..  UGGHH.. I know Dylan is better...I am so thankful for that. I mean the last couple of days of DJ's life I was praying for Papa to take him home quickly... He did...our answered prayers aren't always what our will wants... I trust his Gods  plan completely but I don't have to like them every moment.  I have't been blogging because I know my mind is a whirlwind...  I just know it's bouncing around. Just like this;) So when I am able, I will share the last month with you...

This month is CHILDHOOD CANCER AWARENESS month...Please join us. If we can all come together we can make a difference. So please join us...Help these beautiful babies!! TURN FACEBOOK YELLOW THIS MONTH =) Thank you!!

Diffuse Intrinsic Pontine Glioma (DIPG)

A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.
Source: The American Brain Tumor Association

The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones.

The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.
Source: St Jude Childrens Research Hospital

In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects which would be unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. The cure starts now...
Source: The Cure Starts Now

We currently DO NOT know what causes brain tumors. The major causes seem to be chromosomal and genetic abnormalities. Research so far has statistically proved very few instances of possible environmental causes for childhood cancer. The Children's Oncology Group (COG) continues to conduct epidemiology, cytogenetic, and microbiology studies in their quest for answers.

Funding for pediatric brain tumor research is critical since treatments discovered for adult brain tumors may not be appropriate for children. Pediatric cancer research has been important in understanding the basic biology of cancer, treating adults with cancer and providing principles of therapy and advances for other diseases of children and adults. For example, chemotherapy was first shown to be effective in curing children with cancer.

In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining. (we can change this!!!) We can make a difference. It breaks my heart that funding is very minimal for a monster that gives these kids a death sentence.

 We as TEAM DYLAN FRICK will spread awareness and raise money for research. I can't express how thankful we are for each and everyone of you. Thank you again for you continued prayer, support, love, and financial support. It has blessed us with time that was priceless =) Thank you for being part of our journey.

Dylan's Celebration Info

I haven't been able to write...I can't even explain how broken I feel. I know time will heal..time is just going really slow. I just wanted to share Dylan's Celebration info. Thank you for following his journey. His legacy will live on. We have many things in the work. We are excited to share as things start happening. We love you all and can't thank everyone enough for all of your support and Love. It has made this storm in our lives much more bearable.

Greenview, Ca-Last Saturday, Aug. 13, 2011, Dylan James Frick succumbed to the Brainstem Glioma he was diagnosed with on June 6 of this year. His loving parents were by his side.

Josh and Jenn Frick welcomed their son Dylan into the world on Nov. 11, 2000 in Medford, Ore. As a toddler, Dylan enjoyed playing with Bob the Builder toys, watching “Shrek” and putting his favorite Thomas the Trains on the track watching to see who went the fastest. A few short years later, Dylan graduated to PlayStation games and building LEGOS. He started with fairly simple LEGO sets, like cars and small space ships, then progressed to a large castle with working parts and an old sailing vessel.
Dylan’s faith in the Lord grew strong in the last few years. He enjoyed attending Awana and looked forward to church on Sundays. Soon after Dylan’s brain tumor (DIPG) was diagnosed, Dylan and his family went to stay at the Ronald McDonald house in Palo Alto. Dylan knew he had a life-threatening condition, but instead of feeling sorry for himself, his kind heart and strong faith led him in another direction. One day, Dylan looked up at his dad and asked, “Do you think the other children here know Jesus?” Josh replied, “I don’t know, Buddy. Why do you want to know?” Dylan answered earnestly, “Because I want to pray with them.” And they did pray with several families that day, all because a selfless 10-year-old boy wanted to bring peace to other sick children.
During his stay at the Ronald McDonald House, Dylan compiled a “Bucket List” of things he would really like to do. Among them was going to an Oakland A’s game, getting baptized at Jones Beach, and experiencing LEGOLAND. Not only did he cross everything off of his list, he also received a beautiful gift from his favorite singer, Kim Walker. She came to visit Dylan and sing for his family. Dylan never lost his wonderful sense of humor, either. Jenn was outside one night trying to collect her thoughts when she was charged by a territorial raccoon. She quickly aimed a rock and hit him in the head. Instead of frightening him away, he chased her back to the building! A few weeks later, after the family returned from their trip to LEGOLAND, Dylan was ready. As they got out of the car, Dylan started smiling and called out, “Raccoon … my mom is here,” then he turned to Jenn and asked, “Are you scared, mom?”
A few weeks ago, Dylan hosted a community party at Greenhorn Park to thank all of the wonderful people who worked so tirelessly, donated generously and prayed for his recovery. He had a great time that day and was able to make some wonderful memories.
Dylan is survived by his parents Josh and Jenn Frick; his sister Lyndi; his paternal grandparents Scott and Tammy Frick; his maternal grandparents, Rosalinda Sendejo, Sonia Cantrell, Paul Yingst and Dwight Fugler; and his aunts and uncles, Luis and Jessie Valladares, Will Fugler, Julie, Jessica, Selena and Bianca Sendejo.
In lieu of flowers, please make monetary donations for LEGO sets or donate actual LEGO sets to Mountain Heating & Air, 211 E. Oberlin Rd., Yreka, CA 96097, or to the Frick Family, P.O. Box 121, Greenview, CA 96037. Each year, the Frick family will be traveling to the Lucille Packard Hospital on Dylan’s birthday to handout the donated LEGO sets and pray with the families living in the LPH house awaiting their treatment.
There will be a celebration of life party in Dylan’s honor at Lower Greenhorn Park this Saturday, Aug. 20, 2011 at 1 p.m. Per the family’s request, please wear bright-colored clothing, bring a folding chair and a main or side dish to share, and come celebrate what a remarkable young man he was.

This was Dylan's Favorite bible verse:
“If we live in the Spirit, let us also walk in the Spirit.” – Galatians 5:25
Girdner Funeral Chapel is handling the services for Dylan.

Thank you again The Frick Family

An Unreal Friday

I have let my sweet princess down...my son my needs me by his side. He has made it clear he doesn't want me to leave his side. Not that I want to. You may read this going what is she talking about. Well as some of you know our Princess turned 9 on Monday. Well tomorrow she is having her all girls tea party. She wanted me to go with her. The place the tea is being held is over an hour from our house...I promised him I wouldn't leave his side. I told her I would go to this party. So I have to let down one of my children. So my heart breaks because I hurt hers. We have been trying to keep her busy with art, bike rides, friends, and family. She is so broken. Her big brother is passing away before her eyes. I feel so helpless...I am... I can not leave him. I don't feel there is much time left and neither does his Doctor. I am by his side 24/7. I just feel dazed...I sit here and go this is really happening...It is. I don't know if I can really do this..I know Christ will continue to give me strength, that's what I am praying for. We just want him to be comfortable...ugggghhhh....He woke up today with his eyes popped wide opened with his arm and hand reached out for me. I grabbed that hand and he closed his eyes and went right back to sleep. This isn't fair... Thank you Papa God for the strength that you continue to give us. I know great things will come from this. Thanks for loving and supporting Dylan and our whole family. It's one of the things that makes this storm way more bearable. GO TEAM DYLAN FRICK

So Very Broken

Afraid things have taken a things for the worst. The last three days have been very trying for us all. We as a family still try as hard as can be to laugh, share stories, and keep it as joyful as we can. We do not want either of our children to suffer anymore then they both already are. We are thankful the Lord gives us strength to love, and support them in the manner we have been able to. Do not get me wrong. I cry just in the night, and when I go outside. I pray and surrender again to Papa God. I feel a strength and way to find the joy throughout our days in these moments coming to Him.

Dylan has only been able to have popsicles and only a couple of times in the last three days. No food anymore.. His oxygen levels have dropped about 40%. His heart is working overtime, and his organs are shutting down. His coloring isn't looking very good, and he sleeps 95% of the time. When he is awake he can't really talk a whole lot. It's all happening so fast. It feels so unreal. I know it is real. It's just like has it really turned this bad this quickly? He only received his diagnosis a little of two months ago. I WANT MORE TIME!!! Want parent wouldn't. This cancer has robbed my child of his precious life.

So as I sit by his bed I rest in the fact that With Christ All Things are Possible...Even losing our precious angel Dylan <3 Praying for His Will...If he heals him Praise Him..If He heals, restores, and makes him complete in Heaven we will Praise Him. Either way we pray His will is soon. I don't want him to suffer anymore.

"And we know that all things work together for good to those who love God, to those who are the called according to His purpose." Roman 8:39

Still Counting It All Joy

I want to start off by saying that Children who are fighting cancer are such an inspiration. So many sweet angels. I just want to bring an awareness and raise money for research!! We need to beat this monster called cancer. It has no place in anyone! Feeling helpless..So as he sleeps I type.

I want to count all the joy we had today. Then I will fill you in more on what is currently going on with my little guy. So we have a new doggy. Dylan is in love with him. His name now is Buddy. Buddy is a great new edition to the family. Dylan had an oreo chill;) His nurse Nelly( such a blessing) helped us every step of the way!! Thank you Father for her. We really love her so already. The nurse Larry got his Catheter in first try(PRAISE YOU JESUS!!) Had an incredible family come eat lunch, and pray behind the hospital for Dylan and our family. Had so many wonderful people praying for my angel. I am just so thankful for the good stuff. I am also thankful for the bad stuff...sounds weird I am sure. I know that God will be strong enough for the both of us. His plans are bigger then anything I could fathom. I rest in his goodness. He is molding us all through this!!

Now on to the stuff that isn't so much fun. I am thankful we can continue to stand strong as a family through this time. Part of having a DIPG is losing your many of your body functions. So he has problems swallowing, breathing, walking, and using the restroom. Well over the weeks his urinary retention has gotten worse and worse. It stopped completely yesterday=( After I told him what his Doctor said about getting a catheter he tinkled the littlest amount, but that wasn't even worth measuring. His wonderful Nurse came over and attempted one and he had an obstruction. We went to the hospital immediately. All of his pain medicines have been increased. His nurse got it in on the first try. However, we just hung out while he slept for a couple of hours. The pain he experienced and continues to experience breaks my heart. I just look at him completely amazed at the strength he has. I thank God for the strength and peace he gives my baby.

We can't thank each and everyone one of you enough for you support. It is such an encouragement to my family. Thank you so much for all of your love, support, prayers, and encouragement! It's priceless. Much love from the Frick Family

"Count it all joy my brothers when you meet trials of various kinds" James 1:2-7

Spreading Awareness

I research, copy, paste, cry, pray, and pray some more. So many sweet innocent children suffering with sickness. Please pray for so many hurting families. Our heart breaks for them as well as for ourselves. I had no idea how many children suffered from cancer. Cancer really sucks.

The only thing I can do is spread awareness, and Let people know about childhood cancer. It can effect any child at anytime for no reason at all. Scary stuff we know.

I feel so helpless. The helpless feeling seems to get worse every day. Daily Dylan gets worse. Today was his last trip over the Forrest Mountain. The bumps, light, and getting in and out of the car is just to much.. He is eating less and less. He is on oxygen more and more. His pain is getting unbearable. So we take the best care of him and pray. Watching our sweet precious child slip away day by day is something I can't even explain with words. Continue to give us strength Lord God.

I also research like crazy. Not researching for the "miracle cure" but researching what is being done to find cures , and what kind of funding do they have for curing childhood cancer. He was able to complete 4 radiation treatments but the outcome wasn't good. So we went with quality of quantity. When we left LPCH she gave him very little time. Praying that someday parents won't have to make those kind of choices. This is information about the brain cancer that Dylan has.

Diffuse Intrinsic Pontine Glioma (DIPG)

A Diffuse Intrinsic Pontine Glioma (DIPG) is a tumor located in the pons (middle) of the brain stem. The brain stem is the bottom most portion of the brain, connecting the cerebrum with the spinal cord. The majority of brain stem tumors occur in the pons (middle brain stem) and are diffusely infiltrating, (they grow amidst the nerves), and therefore are not able to be surgically removed. Glioma is a general name for any tumor that arises from the supportive tissue called glia, which help keep the neurons, ("thinking cells") in place and functioning well. The brain stem contains all of the "wires" converging from the brain to the spinal cord as well as important structures involved in eye movements, face and throat muscle control and sensation.
Source: The American Brain Tumor Association

The median overall survival of children diagnosed with DIPG is approximately 9 months. The 1 and 2 year survival rates are approximately 30% and less than 10%, respectively. These statistics make it one of the most devastating pediatric malignancies.
Source: Treatment of newly diagnosed diffuse brain stem gliomas in children - David N. Korones.

The standard treatment for DIPG is 6 weeks of radiation which often dramatically improves symptoms. Unfortunately, problems usually recur after 6 to 9 months, and progress rapidly.
Source: St Jude Childrens Research Hospital

In their quest for a cure, DIPG children must move from one experimental protocol to another enduring treatments with many side-effects which would be unacceptable with any other diagnosis. The cruelty of this disease cannot be denied. Sparing their cognitive abilities, DIPG slowly robs children of their motor functions resulting in partial paralysis, loss of voice and sight and finally ending with an inability to eat and breathe. It is both heart wrenching and painful as they are fully aware of their decline often until their last day. The cure starts now...
Source: The Cure Starts Now

We currently DO NOT know what causes brain tumors. The major causes seem to be chromosomal and genetic abnormalities. Research so far has statistically proved very few instances of possible environmental causes for childhood cancer. The Children's Oncology Group (COG) continues to conduct epidemiology, cytogenetic, and microbiology studies in their quest for answers.

Funding for pediatric brain tumor research is critical since treatments discovered for adult brain tumors may not be appropriate for children. Pediatric cancer research has been important in understanding the basic biology of cancer, treating adults with cancer and providing principles of therapy and advances for other diseases of children and adults. For example, chemotherapy was first shown to be effective in curing children with cancer.

In recent years, the amount of funding for childhood cancer clinical research from the federal government has been declining. (we can change this!!!) We can make a difference. It breaks my heart that funding is very minimal for a monster that gives these kids a death sentence.

This is just the beginning. We as TEAM DYLAN FRICK will spread awareness and raise money for research. I can't express how thankful we are for each and everyone of you. Thank you again for you continued prayer, support, love, and financial support. It has blessed us with time that is priceless =) Thank you for being part of our journey.

Day After Day

Day after day of Dylan being sick breaks my heart. Not that it wasn't already broken. We are trying to just have fun everyday and be in the moment. I am going to share a couple of heart breaking moments and a couple of very joyful things. I appreciate all of your love, support, and continued prayers. I just can't thank you all enough.

Lyndi our princess has been struggling. The last couple of times she went to spend the night somewhere she has called to come home. This time when she got picked up she shared with us what was going on...Me "Babe why didn't want to stay the whole night?" Lyndi in tears " Dylan may die in the middle of the night. I am afraid I will never see him again." Break our hearts. I had no idea. We pray!!

Dylan has had many times he just breaks into tears. I had no idea that he would have the hardest time being home. Please do not get me wrong. He is VERY happy to be home. However, he is the only sick child that goes around with a wheelchair and oxygen. As we strolled through Raley's the other day he starts to cry. "mommy there are no other sick kids here. Everyone else in wheelchairs are old." On my knees in Raley's, we pray. People are curious and constantly looking at him. He wants to get out and about. It will be less though. He doesn't have the same kind of energy.

So for the good news...

Dylan has had his guy party!!! He had an absolute blast. They played legos(surprise.lol) ate food, camped outside, and just had a good guy kind of time =) He has been able to see so many of the people he loves and cares about. We went and watched smurfs. It was a cute kid movie. Dylan really liked the Kitty in the movie.lol He cracks me up all of the time. His laughter is contagious. I can hear him laughing as I type...LOL seriously awesome.

As I sit here about to wrap this up tears streaming down my face( the laughter is soo good) I just want to say enjoy each day. Wrap your arms around your loved ones and cherish as many moments as you can. Even if your kids are grown...please hug them. We are never to old.

"Count it all joy, my brothers when you meet trials of various kinds." James 1:2

Home Sweet Home

It's been a little while since I have blogged, or even been online for anything other then legos.lol So this morning I am taking the time to catch you all up.

We are home =) We arrived here Sunday. I can't express enough thanks to Mama Frick and my sister in law =) They had balloons hanging and posters. Outside was a wheel chair ramp that was made special by a couple of our awesome friends. We were overwhelmed with love and compassion. SO THANK YOU!!

Everyday Dylan has wanted to go to Yreka to do something. Most of the time it involves a oreo chill from Golden Rush.lol He is so happy to be home. These are his stomping grounds ;) Wednesday he got Baptized at Jones Beach. It was beautiful. We had close friends and some family with us that day. It just happened to be the first SONny day since we have been home =) Thank you Jesus! This was also the day Dylan started oxygen. They didn't really want him to go get baptized because he was having problems that day. However, he said he had to be baptized. On the way there he mentioned he didn't want to lay back flat. He gets HORRIBLE headaches when he does. I said maybe the could pour water over him...he replied..no mom I need to be be completely dunked...BLESS HIS HEART...we found a way to make that happen=) Continue to learn from my babe everyday..

I just really want to thank EVERYONE in our community... The outpouring of love, and prayers have been incredible. We can't thank you all enough. We all want to thank you for the financial support. It has been an incredible blessing for us. There are no amount of words that could express our gratitude. We will be doing whatever makes Dylan, and our family comfortable during these times, and because of all of your support that is possible!! Thank you, Thank you, Thank you!

"Let us love one another, for love comes from God." 1 John 4:7

Thank you for loving us! Much love from the Frick Family!

So Much To Share

I have so much to share.. I don't know where to start..lol So I decided I would time line the days and share the highlights =)

July 8- We were picked up in a limo at the Ronald House. We flew out from San Francisco. We were all so excited. Dylan didn't say anything until he got off the plane, but the flight made him have the worst headache yet. We took him to the Resort so he could rest for the evening.

July 9- LEGO LAND... He was up and ready to go earlier then we expected. We went on a morning walk and then to Ihop. It was so exciting to take him inside and watch him be excited about so much!! He wanted to go on rides, and play games. It was exciting. We met with my dear friend Cara. It was an amazing day!!

July 10- We went to the San Diego Zoo. It was incredible. So many beautiful animals.. We were amazed at everything our creator has thought of.. I type and smile to think of how he love us. The zoo was exhausting for him. After a couple of hours we went to the theater and watched Zookeeper. It was cute. He laughed a lot. It was a nice relaxing evening.

July 11- Sea world was awesome. We watched Shamu, and saw so many amazing sea creatures. We even went on fun rides that the whole family could enjoy. Moments we will cherish forever. Dylan and I went to sleep early this day. So daddy and Lyndi went and built a Sand castle on the beach =)

July 12- We went back to Lego land. We went on so many fun rides he enjoyed!!! We watched clutch powers in 4D...Super cool. He Pushed himself all day so he could do everything his heart desired. He is such a warrior.

July 13- Get up as a family to do a Sonrise walk. It was just wonderful to spend time together enjoying God's beauty all around us. We packed up and started to head to the airport. Throughout the week we checked with Dylan to see if he wanted to drive home..He didn't. The drive would be to long he said. Two hours before the flight. He bursts out in tears.."mommy I can't fly it hurts to bad." I let him know we will drive home. No big thing. It took us 12 hours with all of the stops. We would do it again in a heart beat. The time in the car was precious.

July 14- Have to go to the Doctor, pack up at the Ronald House, return our rental, pick up my dad from the airport, and go to Sacramento. We end up having an incredible dinner with our amazing family. It was such a great night. We really enjoyed being with everyone. Dylan was so happy to be with his cousins.

July 15- The kids, Josh, and my dad(Paul) go have breakfast at Josh's Aunty's house. . Then we went to lunch at the Spaghetti Factory..Dylan really wanted this for lunch.lol Then off to Redding. It was so nice to get here. We are so close to home. It's exciting!!!!

July 16- What can I say about this morning at Bethel....God is always working. His word is alive and active...It was exactly what we all needed. We got to meet up with some of our favorite peeps and got to meet a new incredible family. They were so on fire and in love with God. It was so wonderful to be part of. There doesn't seem to be words that really justify the experiences the Lord continues to bless us with. HOPE!!

So I know that is a rough breakdown of the last 10 days or so. I have wanted to share so many things on so many different occasions. My day just gets away from me, and before I know it I am going to bed. I think and pray for so many of you often. We can't wait to be home!! I also wanted to talk to the incredible people in our home town, and county. We will be home at the end of this weekend. We are excited to see so many of you. However, we do not want to overwhelm Dylan. So we hope to set up times that will work with his schedule and health. If you have cold, coughs, flus, rashes..etc within the last 72 hours we can't have you visit us. As soon as you are healthy of course you can. Dylan doesn't show a lot of expression, and is disabled at this point. He however has full mental capabilities. So please ask him questions and interact with him. He likes to feel as normal as he can. When we were on our vacation so MANY people stared at him. I understand kids...They are just so curious..The adults were the worst though. Please if you see him do not stare. It hurts him. I know we can't shelter him from everything. However, I can do my best to make this as easy as possible.

As I type this many incredible people in our community are attending, have put together, donated, shared, cooked, set up, I can't even name everything you all have done for us... THANK YOU, THANK YOU, THANK YOU! We can't express our gratitude. Your support has helped us everyday!!!! We just love you all!

LOVE

I know words could never truly express how much every one's love, support, and prayers have meant to my family. We feel an outpouring of love. It helps us daily!!

"The Lord is good to all: and his tender mercies are over all his works." Psalm 145: 9

I don't even know where to start....

The A's game was incredible!! I have to say we are forever A's fans. They gave my baby guy the best experience. He went on the field met some of the players, had great seats, and a care package. Detra was the incredible lady who set everything up. Thank you again Detra, you ROCK!! The players were incredible with Dylan. Josh Willingham gave D his batting gloves, and bat. Josh W. actually said he would give him his shoes but he had to play in them. Heart of Gold. Made this mommy cry. Dylan was ecstatic. I wish I could share the laughter and smiles he had. It blessed my soul.

We are counting down the days until Lego land. It's only a couple of days away!!!! Then we go Sac, BETHEL, then home=) Dylan is so ready to be home! He has a list of things he already wants to do when we get there. One of them is to be baptized at Jones beach=") What a glorious day!! His health continues to decline...but his high spirits and trust in the Lord continues to teach us so much. Dylan continues to make jokes at my expense.lol I love it. He is so funny. Laughter is so good...We laugh a lot!!!

I don't know if I will blog when I am at Lego land with the family, but I will for sure when we get back. I will keep my facebook current with pictures and what's currently going on. Thank you again for all your support! Much love and Big hugs. Enjoy your beautiful summer!!

Feeling Broken

God is my strength and my refuge....So glad. How do you deal with this without Jesus Christ? I say this because I feel like a complete wreck today. I know what they have told us.. I just don't want to believe that...My day to day faces us with the reality of him getting worse. Then night, after night of not sleeping, or sleeping very little... It starts to wear you down. So today, and yesterday all I have wanted to do is cry. I do have my moments.. I just do NOT have those moments in front of Dylan. He has enough going on. The last thing we want to do is have him worried about how we are feeling. So now I have to cry through my words today...I just want this to be a horrible dream I wake up from. FATHER GOD I CRY TO YOU...I do not know your Will, but I lift my precious boy up to you over, and over, trusting you completely!!

"The eternal God is our refuge, and underneath are the everlasting arms." Deuteronomy 33:27

Precious Time

Our incredible son truly teaches us so much everyday. I hope that you all remember that kids are pretty incredible and have a lot of insight. Cherish every moment. On our way to cash his piggy bank change for Legoland he asks me in a very serious voice..."mommy do all the kids at the hospital no Jesus?" I said "some do my love and some do not. He then says " we should bring our bible and teach them about Him." I LOVE HIS LOVE FOR JESUS CHRIST our LORD and SAVIOR!! We just soak up what the Lord is teaching us through our baby guy.

So we want to share what is going on with our precious angel with you all. Radiation is a no go. His tumor is just growing so fast=( Dylan wasn't wanting to do his treatments. We prayed, prayed, read our Bible, prayed, and read more.....We then spoke to his Doctor today. She completely agrees with us. She said things are going really quick , and that this is the best decision for the quality of his life...We thought last week was the hardest choice of our life. We were wrong...However, We continue to contend with our Papa God for a miracle..but we know whatever happens our God has us completely covered. WE GIVE YOU THE HIGHEST PRAISE!!

Yesterday he we had his Grandma Tammy come to visit with him. Then we went to California Great America=D We looked around and had an awesome lunch. Dylan had a blast with his Daddy on the race track. They got 1st place =) Dylan was wondering where their trophy was.lol We also are going to see the A's on Monday. Legoland very soon:) Bethel in the next couple of weeks, and then home sweet home. Dylan just want to drive over the mountain and see our gorgeous Healing Valley!

We will continue to keep everyone updated. I just want to thank everyone for all the care packages, notes of encouragement, prayers, financial support, positive thoughts, and just being here for us. We feel so HONORED and BLESSED to have each and EVERYONE of you in our life. Much love to you and yours. Big hugs.

"You will keep in perfect peace those whose mind are steadfast, because they trust in you. Trust in the Lord forever, for in the Lord. JEHOVAH is everlating strength." Isahiah 26:3-4