Ya know, I usually check my email at work. So, as I'm reading the notifications on caringbridge, there's always tears on my cheeks. It's kinda hard explaining to the other guys why I'm crying over a kid I never knew, but they understand now, after reading all the updates. And quite alot of them(me included) want to do something for the family, but we're not sure what. So, Adam, you know them, maybe rc.com( and families) could do something. I know there is nothing we can do to ease the hurt, but........ hell, we gotta do something for this incredible family that is going through hell. Any suggestions?

FRIDAY, JANUARY 16, 2009 01:42 PM, CST
Hoping to post what Grandpa Tim wrote for the Memorial and the Lyrics to the song My Dad wrote for Diego before he died for his Birthday in the next couple of days. This song was played by John Brown during one of the two slideshows during the Memorial:

http://www.youtube.com/watch?v=BkogKAZGm_g


We miss our little hero.

MONDAY, JANUARY 19, 2009 09:48 AM, CST
Claim Jumper tomorrow! You must have printed out the flyer and give it to your server. Go to: https://giftshop.curesearch.org/c-66-.aspx

We will be at the one in Long Beach at 11 am.







"We must accept finite disappointment, but we must never lose infinite hope."

- - Rev. Martin Luther King, Jr.




I went for a walk in the neighborhood alone yesterday. I realized how it had been over 4 years that I was able to take a walk and just be inside my head. I remember how I would go for walks with Diego sometimes twice a day just after he was born and he was in his infant seat facing me. I loved to stare at him and was happy to be his Mommy. I started to cry as I walked past the school and was tempted to through myself on the grass and let it all out but knew this would concern people. I walked on and was able to be at peace once again. I used to walk with a neighbor for motivation or as family for fun but had really missed this. It was a quiet mediation. I will be going for more walks likes this.

TUESDAY, JANUARY 20, 2009 04:34 PM, CST
This is an entry I made in the guestbook on 1/02/2009. I also read it at the memorial service. I wanted to testify to the gift that the caringbridge family and guests have been to our family.

Though I have shared this wondrous, hard and miraculous journey that is the life of Diego Fuentes with you, I have only infrequently posted in your guest book. In the three years that Diego has battled this "Kraken with a capital C" I have seen the miracles multiply in our lives and in the lives of so many who have posted in this guest book.
I have witnessed the overwhelming outpouring of God's love through His people, His church world wide. I have watched lives change in front of me and hearts turn to our Father God. I have read postings celebrating, crying out to and worshiping the God who loves each of us so dearly and passionately. I have been blessed with the expressions of God's heart of love poured out through His family to all of us in postings representing 6 continents that I can list:
North America, South America, Europe, Asia, Africa and Australia.

This amazing soul, Diego, has, through his sweetness, joy, tremendous courage, passion for wonder and love of life touched many thousands of people. He has challenged us and encouraged us. He has accomplished these things in 5 years of life.

His sweet unencumbered relationship with Jesus has been instrumental in bringing souls to Christ including some very close to him.

Frank and Michelle, your passion, determination, love and courage have inspired us no less than that of Diego.
Their have been numerous confirmations of this in the lives of many both locally and beyond as stated in this guestbook.

I could continue to write indefinitely. I am overwhelmed with the scope of the "Diego effect."
I know it is said that God takes souls to heaven at the appointed time. In this instance I believe that God welcomed Diego to heaven and said, "Well done, good and faithful servant."

I grieve the loss of Diego's physical presence here with us but I feel the presence of his soul and his influence now and for eternity.
Diego fought with courage, he never gave up. Death did not defeat Diego.

I paraphrase William Wallace in Braveheart:

"Cancer can take away Diego's life but it can never take away his freedom in Christ."

On the same day in the guestbook Diane K, Mayborough posted the lyrics from a Mercy Me song. I quoted this chorus as a conclusion to my reading:

"In Christ there is no end
So I'll hold on to Jesus with all that I have
To see you again
To see you again"....Thank you, Diane

A very proud grampa, Tim


A link to the song and lyrics:

https://www.griefhaven.org/mercyme.html

WEDNESDAY, JANUARY 21, 2009 08:52 AM, CST
Triggers

You never know what or when a storm will take you over nor how strong it may be. We were a really dumb comedy the night before last night and in one scene the actor starts to cry in front of a girl he tried so hard to impress. She asks him if he is crying and he replies no I just have something in both my eyes. I immediately flash to the first time I cried in front of Diego. I had just finished speaking with the surgeon who performed the biopsy on Diego. He told me he was pretty sure it was some type of sarcoma and would let me know when the final pathology came in and he wanted to schedule a chest CT. He left the room and his nurse said take your time in the room. Leave when your ready. I immediately started to cry when they left. Diego said holding my hands looking up at me with his full head of beautiful, thick blonde hair, "Mommy what's wrong, are you OK?" I replied, "Yes baby my eyes are just watering." I remember his cute button up shirt and painter shorts. He truly looked like a living doll. I went into Diego's room and cried so hard I almost got sick a few times, choking. People can say at least he is not in pain anymore but really the pain was under control at the hospital. Whether he had some the hideous pain some cancer patients have or not it does not make the grief any less nor does it take the desire to have that person back away. Especially a young child. Yes Diego created a lot of positive change but his death did not further that. I cannot ever say it is a positive that I do not have my child. It is unnatural. I will grieve him as long as he is dead.

The grief has set in deeper this week. Today will mark 4 weeks since he died. 27 morning I have woke up without my son. "Knowing the Lord and His comfort does not take away the ache; instead, it supports you in the middle of the ache. Until I get home to heaven, there's going to be an ache that won't quit. The grieving process for me is not so much a matter of getting rid of the pain, but not being controlled by the pain." author unknown

So I woke up yesterday morning doing my best to hold it together. We went to Claim Jumper for lunch and then Whole Foods. I have been once before since he died but today it was harder to see Diego's must have's. Thinking he will never drink a Good Belly again or eat that organic, nitrate free turkey bologna. And yes he asked if what he was eating was organic or natural! Well last week I had recalled a time when we were on the freeway just after leaving City of Hope and a ladybug was on the inside of Diego's window. He told me we needed to go back to City of Hope so it could go to its home. I said honey we can't. He asked if we would open the window and let it fly out I said know he would die. He said, "Well lady bug it looks like your going to a new home in Long Beach!" I have thought of that story everyday since. Lilia and I got back in the car after going to Whole Foods and I was a bit distressed. Frank went back in to the store because I forgot to pay for a case of energy drinks under the cart. Lilia yells, "Mommy look their is a ladybug on the window!" Frank got back in the car and I showed him as well and he said, "Let's take it home!"


We are going to Palm Desert this weekend so I may not update until Sunday or Monday.

MONDAY, JANUARY 26, 2009 04:28 PM, CST
We had a nice trip. Beautiful weather. Grief follows everywhere you go though. It is not like other trips where I really could get away from it all. There is no getting away. I did feel closer to Diego there, Frank and Lilia too. I really do love the desert when it is just as the weather was about 74 and mostly sunny. The stars are so much closer there. We had a great view of the golf course and mountains.


I want to leave you with this reading from Diego's Memorial:


Written by Diego's best friend's Mother Karen Bingel who knew him well. We would meet up at least 3 times a week for a playdate. Diego loved her. They are family.


How do I put into words: Diego? This amazing five year old, who has forever influenced the way I view life. Despite being amongst us for such a short period of time Diego has inspired so many people around the world.
When I think of Diego, the first word that comes to mind is STRENGTH. The strength that Diego had shown throughout his life is truly awe inspiring.
There are so many wonderful memories that I will always hold dear but I want to share one special memory that shows his strength:
Within days of Diego's initial tumor in his arm being removed and major reconstructive surgery done, he attended my son and his best friend, Justice's third Birthday party. He lay in a red Radio Flyer wagon, unable to walk but still smiling, just glad to be there. When it came time for the pinata, Frank, his dad rolled the wagon under the tree... With tears in my eyes I watched this courageous boy take a bat with one arm and hit the pinata with all his strength.
That is how Diego lived his life, fighting most everything that stood in his way. Till the very end he fought, with one last roar. Diego is among the strongest people that I have ever known. I and my family love him dearly!

Diego was a Pirate and he has captured my heart as Booty!

We love you Diego and you will never be forgotten!

Karen and Family

WEDNESDAY, JANUARY 28, 2009 02:51 PM, CST
This was read at the Memorial.

Preface: This was written by Adam Bingel and included pictures just after Adam left the Long Beach last February 2008. Some words were changed as they did not fit without the photos. He sent it to everyone he knew.


My hero, Diego Fuentes…



This is my hero, Diego… He’s my son Justice’s best friend, and he’s a gregarious and articulate 4 year old boy with a rare form of cancer, Localized Stage 3 Spindle Cell Embryonal Rhabdomyosarcoma.


Diego is so brave that he has endured numerous MRIs requiring him to remain motionless for extended periods of time, a round of radiation and chemo therapy lasting months and requiring him to have a feeding tube, be isolated from his friends due to a severely weakened immune system from the radiation and chemo, extensive surgery to remove the cancer and reconstruct the muscles and nerves in the affected area (his wrist) with tissue and nerves harvested from both legs, only to still find cancer in the margins, and have to do it all over again. This has lasted almost 2 years !!!


Why is he my hero ??? Because I often complain about having to endure much less, and will even quit at times because I am so impatient that I just can’t wait it out. Many times I have left items at the checkout line and walked out of the store due to my self-centered impatience. He has no choice, he just does it, he still smiles, and more importantly… He doesn’t quit !!!



In a picture of him at the annual Jonathan Jacques Children's Cancer Center Torch Run 2007, held in Long Beach:


He was initially having trouble carrying the torch, as this was after his surgery, and his wrist was notably weakened by it… His mom, Michelle, asked him to let her help him, and he said, “No Mom! I can do it myself!”, clutched the torch tighter and picked up his step so much that all of us behind him had to quicken our pace just to keep up. He doesn’t quit !!!



He was at my son’s 3rd birthday party about a year ago, just weeks after the major surgery.


Again… He just will not quit, and will try to do everything the other kids do. He just doesn’t quit !!!


He love’s that now he can go out to eat, and even go to school and play with other kids.He’s even a great big brother to his little sister, Lilia (little mama).




Unfortunately, we have just learned that my hero, Diego, may not have beaten this, and may have to endure this all over again, and will likely even lose his arm. There appears to be another tumor at the site.


Diego, his family, and all of his many friends, which I am proud to be one, will endure this with him.


And once again, he will not quit !!!



That’s why Diego is my hero.

THURSDAY, JANUARY 29, 2009 10:42 PM, CST
There are no words that encourage. Nothing will make it better. We do manage but I know unlike the death of grandparents, an uncle, close family friends, and a young adult friend this wound will never close. The pain will become more manageable but it will always be here. Losing a child is the worst thing that could ever happen. That does not mean we do not smile and have happy times but it is mostly bittersweet. Getting out with friends seems to be the best medicine.

Lilia has been potty trained night and day for over 3 weeks. Diego would of been so proud of her. He made such a big deal of her using the potty. He stopped the world for her. She also had her first haircut- really a trim. She loved every moment. Smiling the whole 5 minutes it took. It was adorable. Lilia will also start ballet next Thursday. Another thing Diego would of been happy about and I'm sure would of told everyone my sister thinks she is a professional ballerina. She wants to listen to Foo Fighters "Hero" over and over along with Diego the Pirate song (lyrics to be posted soon). She mimics the conversations they used to have. The silly things they always said to eachother.


So we press on as hard as it is. We wish there was an "easy button" for the rapture. Can't remember which commercial that is from. We still get cards and two friends brought great meals this week which is nice. Diego's ashes sit in a treasure chest on his dresser which is still filled with his clothes. Thinking of making a quilt out of all the cool button up shirts he had over the years. Thinking of going to a compassionate friends support group. It is so real yet so unbelievable. Knowing our friends are here and care has really got us through. Knowing they grieve for him too also seems to help.

MONDAY, FEBRUARY 02, 2009 01:34 AM, PST
Trying to get the lyrics to Diego the Pirate up but the caringbridge won't let me save it. Will try to reformat it tomorrow or so. A few things I have not mentioned before. There is one thing you actually can do to help us. If you have a memory of Diego please write it down and mail it or email it to me: MichelleFuentes19[at]hotmail.com These seem to help. Also two more things. When Diego died or anyone dies you have to make decisions quickly. One was that we could donate Diego's eyes and up to four people would be able to see again. We did and had to answer 40 minute phone interview the morning following his death. The other was do you want an autopsy. No we did not. Some of you also may not know that Frank got a tattoo on his right forearm. I will post a picture of it soon. He did that the day before Diego's wake. My friend Karen also got a butterfly on her wrist. The wings are two d's for what her son called Diego, dee dee and the body a gold ribbon for childhood cancer. This was before the butterfly necklace. Maybe she will email me a picture of it to post.


Finally my Aunt Julie whose grandson is Lucas :
http://www.caringbridge.org/visit/lucasasselin

she also has a caringbridge for my uncle Earl her husband:
http://www.caringbridge.org/visit/earlbertrand
please keep them in your prayers.

MONDAY, FEBRUARY 09, 2009 04:49 PM, CST
We are still here. Seems like the shock is completely gone and we are left with unimaginable grief.

TUESDAY, FEBRUARY 10, 2009 09:01 PM, PST
Today was better. Maybe my post sent up a couple hundred more prayers. I got out of bed- the hardest part of the day as waking up is like starting over again. Lilia and I went to the park with a friend and that really helped. Then we went for a walk after her "nap". I think she may be done with those but the transition is not too fun as it lends to an irrational 3 and a half year old at about 6 PM which is usually dinner time. Oh well we will manage. Living without Diego is so hard. He filled our day with such wonder, joy, humor, love and demand. Moving on without him is just plain horrible. We still love and laugh but some days are really difficult.

FRIDAY, FEBRUARY 13, 2009 09:12 AM, PST
Things are a bit better. Still sad but no depression. I see him everywhere we go. Remember so many times at the parks, in our car with his favorite songs, reading books, being silly and his intellectual talks. It does make me cry as there is so much to miss and long for. I don't change the radio station if one of his favorite songs come on , I cry and smile through it. I don't go to a new park as I would have to drive outside the city limits and maybe then some as we often went to a different park everyday four times a week. If I did it would not help anyway. Especially if it is one I find he would have loved. So instead I relish in the memories. Remember dragging Daddy back to the park on the weekend or after work to show him the new thing his boy could do weather it was laughing on the swing, digging in the sand or climbing the apparatus. Lilia misses him too. She too brings up her memories and mimics his voice. The medical memories are hard along with his death. As sweet as it was to have him stroke my hair and hold me close as he died it is hard to remember the labored breathing and him being scared at times. He asked for juice and talked to us. Then the breathing slowed the heart that was racing was faint. How did that happen? Does he see us at the park and miss us? Does he long to cuddle with us again? I wish I knew what he was doing and why he had to leave.

FRIDAY, FEBRUARY 20, 2009 09:46 AM, CST

My friend Heather is doing this. The money will be earmarked for Sarcoma. They need $250 before the t-shirts can be made with Diego's name.

Please Help us make a difference.....
Check out What we are Doing!!!
http://main.acsevents.org/goto/diegofuentes

Thank You.... Heather & the Boys

MONDAY, MARCH 02, 2009 11:17 PM, CST
I fall in love with Lilia more each day. She is truly amazing, but it does not fill the hole. Nothing can. I wish I could move on for her but that is an impossibility. I love her so much and would do anything for her but this cannot be done. As the days go on we go places we all used to go and I cry on the way. Sometimes while we are there. I remember when we were all there. A complete family. Yet I still cherish the new memories being made although bittersweet. So wrong in a so many ways without him. They say time heals but that is not always true. Time makes it more official. Stamps it in your soul like the ink on the death certificate. Sometimes time does not heal. It stands still.

When life derails you but leaves with choices be thankful. Don't sweat the small stuff. Families and there babies fighting cancer have no choices. A few children and their families in need of prayer:

http://www.caringbridge.org/visit/taylorjones

Taylor has AML a very deadly form of leukemia and just had a bone marrow transplant. She is adorable.



http://www.caringbridge.org/visit/jake

Jake has the same disease as Diego and it seems to be following the same course. The need all the prayers they can get. He is one amazing 7 year old. I hold this family very close to my heart.

Taylor is our beautiful 3 year old princess, born 3/3/2005, who had always been healthy until Sept 26th, 2008. Her baby brother, Tegan, had gone to the doctor that day for his one year shots. She had wanted to go but had slept thru the appointment and had missed it. When I got home from work that night she told me she didn't feel well - sympathy sickness? But I played along and felt her head and she really did have a fever. That night it got into the 104 range and I thought something was up but it was controlled with Tylenol and Motrin so I decided we would wait until Saturday morning to take her in. Saturday I tested the waters to see how bad she was feeling by offering up a trip to the park. She happily obliged but just 5 minutes after swinging she asked me if she could go to the doctor and I knew something was really wrong.

I took her to Urgent Care early Saturday afternoon where they ran a strep test that came back negative. He told us that her lymph nodes were really swollen though and he thought maybe the test was just not showing the strep yet and sent us on our way with as prescription for strep.

Saturday night her fever was 105 and she was vomitting and by early Sunday morning I was rushing her into Memorial Hospital's Emergicare. That doctor didn't think it was strep but a viral infection. He said to give her small amounts of liquid to keep her hydrated and to make an appointment to get her weighed on Monday at her pediatrician's office. He also gave her half of a Zofran telling me that they give that to cancer patients for nausea so it should definitely help.

Sunday night her fever spiked again to 105 and as I was giving her Motrin she started crying and then laid down, or so I thought, on the floor. When I went to roll her over to give her the rest of the motrin, her body was limp and her eyes rolled into the back of her head. I scooped her up, told Shane to call 911 and I laid her on her back in the middle of the kitchen. It felt like an eternity as I watched her lifeless body trying to figure out what to do. As I bent down to check her breathing, her eyes opened. Shane had froze as well and 911 was never actually called. I called the on-call doctor immediately after that and they said it sounded like something 3 year olds do - holding their breath so they don't have to take medicine. Looking back I'm sure it was from how swollen her lymph nodes were with cancer.

Monday morning I decided to make her an appt as well as get her weighed. Dr. Reich, her Pediatrician, didn't check her for strep since she had already been tested but told us if she was worse by Tuesday to bring her back and we would get her admitted for some IV fluids and blood tests.

Tuesday came and although she wasn't worse I decided to take her in anyway because she sure wasn't better. Dr. Reich took one look at her, stating how pale she was, and said she had debated on it yesterday but that we should definitely get her into Memorial Hospital for some fluids today. So off to the hospital we went.

I will never forget the first time she got an IV and the nurse who did it still tells me how amazed she was by Taylor's strength. Tay laid there and never moved an inch. The only way you even knew she was awake was the tears that rolled down her face. She was so strong, so brave. That afternoon they drew blood and then came back and did it again.

Tuesday evening around 7pm, Dr. Reich came in the room and told us, "You will be seeing a specialist tonight, we think Taylor has Leukemia."

Just like that and her world was changed, ours was rocked. We were told over the next two days about ALL and the high success rates. Then we were told that she had indicators of AML and then it was confirmed that it was AML. The success rate 60% instead of 90%. We were rocked even deeper. That same day we were told that she had, what appeared to be, chromosomal defects in her leukemic cells. That was confirmed a day after that - monosomy 7 and 5Q- were in half of her leukemic cells meaning she would need a bone marrow transplant to have a chance at fighting this monster.

She has endured 3 rounds of chemo. After the first round she was declared to be in a complete remission and has stayed that way until now. On February 5th, 2009 she received her bone marrow transplant - cord blood from a New York site. The donor's birthday is 10/6/2005 based on the cord blood gathering date and I can't wait until the day Taylor and this family can meet.

She will heal - this is our mantra. She's a fighter and she's going to win.

Thank you for coming along on our journey.

Jake underwent a left radical orchiectomy on November 11, 2005 at which time a 'cancerous' tumor was removed. On November 18th, after a long day of CT scans, bone scans and chest x-rays, it was determined that the 'cancer' had spread to his lungs. On this day we were told of Jake's diagnosis. He has stage 4 rhabdomyosarcoma embryonal. The cancer has been found in his bone marrow as well.

We were stunned and in shock, to say the least. How could our healthy 4 year old boy have cancer?

Jake's little body will now have to endure 12 months of chemotherapy and possible radiation. He received his first chemo treatment the day before Thanksgiving and will receive it weekly for approximately the next 48-52 weeks.

Jake has a Hickman catheter implanted under his skin. Through this 'port', as Jake calls it, he will receive his chemo and have blood drawn. This eliminates the majority of the needle 'pokes', but not all of them.

We are very, very optimistic regarding his treatment. Jake is receiving the V.A.C. treatment, which has been the standard treatment for rhabdomyosarcoma for many years. The curable rate is 60-75%.

We will be at Children's hospital every Friday for Jake to receive his chemo on an outpatient basis. Every 3rd Friday will be inpatient.

So far, after two treatments, he is tolerating it well. Especially with the help of anti-nausea medications.

Children's hospital is the place to be. The staff are wonderful, especially those in the HOT unit and the 8E clinic. His oncologist, Dr. Michael Kelly, is one of the best. I know we will make many friends over the course of the next year.

We want to thank everyone for your wonderful thoughts, prayers, emails, cards, meals, desserts and house-hold assistance. We are emotionally overwhelmed with everyone's generosity and support. We have the BEST family and friends!!

In January 2007 we were devastated once again! Jake's cancer has returned in his lungs. He will under go 50 weeks of chemotherapy, a combination of six different drugs this time around. He will probably have lung radiation as well. We are not focusing on numbers or survival rates....only on the fact that he is receiving the best treatment available right now and we have faith that he will recover and go into remission.

In September 2008, after 6 wonderful months of remission, Jake relapsed again. The cancer has returned in his lungs. Statistics say his chances of surviving this are less than 20%.

THURSDAY, MARCH 12, 2009 06:46 PM, CDT
Another prayer request:

http://www.carepages.com/...s/2027673?client_cod

Zachary's Father Kevin has been such a great support to me. He also has Rhabdomyosarcoma. I could probably fill a few pages with all the kids I know. Will this ever stop?

TUESDAY, MARCH 17, 2009 09:44 PM, PDT

My thoughts while walking today:

At about 16 months of age I believe Diego started to roar like lion. I often was apologizing to parents at the park after he let out a huge roar in another child's face and made them cry. He eventually found another child who loved to roar as much as him and they would run around having a roaring ball. At about 2 and a half Diego still roared but now added two claws. He was a T-REX. This being much more powerful than a Lion, more ferocious as he would say. He never lost his love for all dinosaurs. It was hard for me to part with the Lion. After Diego lost his arm to relapse he loved being Jack Sparrow. When I told him I thought I liked Will Turner better he said that he liked Jack Sparrow because he never died! WOW! What insight. The pattern is obvious. So different then wanting to be a superhero. He believed he could overcome. When we chose Diego's name before he was born, the name I had known of from the artist Diego Rivera I looked up the meaning. I saw supplanter. Valiant warrior. I was not sure I liked the meaning but loved the name. When he was diagnosed his name took on that meaning.

Please do not forget our warriors. I wanted to share an incredible story as well:
http://www.carepages.com/carepages/AmberLamLam

Please read the March 14th entry on her page.


In need of prayer:

http://www.caringbridge.org/visit/jake

http://www.carepages.com/...s/2027673?client_cod

http://www.caringbridge.org/visit/katieferden

Sunday, March 29, 2009 12:38 PM, CDT

Katie age 12 and Jake 7 are now in heaven with Diego (links to there page on previous post). Jake 3 months to the date after Diego's death. I know they are fine but there families are not, will never be. We miss Diego dearly and although we have "good" days it is sort of like being a functioning alcoholic except the pain is not numbed. Most days you can work through it but others you fall. I thank God for giving us such an incredible child but the depth of the pain is as deep as that love. We are "OK". Lilia is doing great. Please go to Jake's sight and read the poem she posted.

Monday, April 6, 2009 10:42 AM, PDT


[Diego, Lilia, and Frank]


Just Beneath the Surface

We are able to walk this walk

We do enjoy ourselves at times

We still function in "the real world"

We smile throughout the day and when people ask we say we are good or OKAY

But just below the surface lies the the worst pain

Like a balloon blow by mouth, not so easy to inflate yet popped or deflated at the slightest mishap

Like an egg that appears to be so strong with such a thin hard surface, yet easily cracked

We manage but often crack and deflate

Saturday, April 18, 2009 10:17 PM, CDT




DISCLAIMER: Very tired MaMa writing here after an overnight trip to Arizona for Relay for Life with very little sleep!

So much going on. Thank you for visiting when I don't even update. First off I want to ask for prayers for Bella. Her Mom Shannah often calls me to check up on me and chat. She has been a great support to me. Her healing and remission was a miracle. Bella was off treatment for 8 months when a scan revealed a golf ball size tumor in her brain. The cancer was removed and she is once again cancer free but really needs a miracle to beat the odds. Please visit her site and keep them in your prayers.
http://www.caringbridge.org/visit/bellart

Some of you heard about the tragic shooting at Long Beach Memorial Medical Center. Miller Children's Hospital is part of this hospital.We remember the workers well and are shocked by the incident. We used the pharmacy many times. We sat many nervous hours in the lobby with many other anxious families waiting for there loved ones while they underwent surgery or procedures. The incident happened in this main lobby and many witnessed the incident. Please pray for everyone that was affected, especially the 3 who lost their Fathers, Husbands, and adult child.

We went to Relay Friday in Arizona where my friend started relaying for Diego last year. It was nice but painful. I will post pictures of our posters tomorrow. We remembered all our friends lost to childhood cancer with the Luminaries. Lilia and my Niece Michelle had a ball!

We are hoping to go to Washington DC for Curesearch Reach the Day. This charity is solely for childhood cancer and most of the money goes right to research. Awesome charity. The event teaches you how to be an advocate. We are going to use some of the Diego Fund money to go as we know this trip will be the beginning of us really doing something to effect the cure. Here is more information: http://www.curesearch.org/...s/index.aspx?id=4450

Stats on this Charity:
http://www.charitynavigator.org/...mmary&orgid=4167

We seem to miss Diego more everyday. One day a couple of weeks ago Lilia and I went with my friend and her son who was one of Diego's best friends to IKEA. Lilia was doing something and I said LILIA FUENTES and he looked at me and said, Diego Fuentes! Made me smile. That same day a Mother from my playgroup told me her son whom we hung out with mainly at Wardlow Park when Diego was sick said that he left a big impression on her son and he often talks about him. They went to Wardlow and he said Mommy this park makes me sad it reminds me of Diego. His little buddies remember him. Then a Mother in a playgroup I recently joined who used do do fund raising for St. Jude's ended up at Miller Children's hospital next to the oncology ward and met one of the childlife staff I had told her about when I had unknowingly shared our cancer journey with her. She said you are right childlife is great there. We gave Diego's awesome Christmas presents to the hospital and childlife told my friend that a three year boy comes in for treatment and always asks for the Diegosaurs!!! Sarah than you for your guestbook entry as well. We hold these things close to our heart.

Sunday, May 3, 2009 12:26 AM, CDT

Taken from another rhabdo kids site:

The Swine Flu: A Crisis It's all over the news. The Swine Flu has entered the U.S., and everyone is responding quickly. Here is what has happened already:

•Over 100 schools have closed.
•President Obama called on all schools with possible swine flu cases to "strongly consider temporarily closing."
•Congress approved $1.5 billion in emergency funds.
•Education Secretary Arne Duncan said that everyone involved in schools needs to "pitch in and do our part to prevent the spread of this flu virus."
•The Department of Education and the CDC have held conferences to give updates and advice for handling the crisis.
•WHO Director-General Margaret Chan has raised the alert level to phase 4.
•Shipments of the drug Tamiflu from the federal stockpile, enough to treat 11 million patients, have been distributed to several states.
•Dr. Jesse Goodman, of the Food and Drug Administration's swine flu work said,"We're working together at 100 miles an hour."
•Congress has asked Homeland Security to consider closing the Mexican border.

Here are the numbers: There have been 84 documented cases in the U.S. There has been one death, a two year old boy with underlying health issues. Updates on the Swine Flu epidemic are all over the papers, T.V., Internet, and radio. You can't avoid it. This is a crisis and deserves a fast response. Sick children, and the death of even one child, is a great loss. So please understand what I am about to say. I in no way wish to belittle those who have suffered from the swine flu. I would just like to point out some comparisons.

1) Since the outbreak in the U.S., there have been 84 cases of swine flu, and one death. Compare that to the fact that 12,600 families are told their child has cancer each year. That is 35 families every single day of the year.
2) The media tells us that the 84 cases and one death from the swine flu is a "crisis" and "epidemic". But do a google search on childhood cancer, and you will find the media consistently refers to the 40,000 children currently with cancer, and the 2,500 annual deaths, as "very rare".
3) To protect yourself against the swine flu, you should wash hands, not touch your nose, and cover your mouth. You can even wear gloves and a mask. But there is no protection against childhood cancers. In fact, the cause of most childhood cancers is still unknown.
4) The swine flu produces severe flu symptoms. The effects of cancer are beyond description. So just consider this: Cancer is part of the body, so the treatment is a process of poisoning the child to the brink of death, then pulling back hoping they stabilize, then hitting them again. And again and again and again. Maybe a year, maybe 7 years. The resulting organ failures often cause more complications and deaths than the cancer itself. And then you wait and pray that it all worked. "Remission" only means they think they got. "Relapse" means they were wrong.
5) The government has opened up it's stockpile of flu drugs to fight the crisis. But there is no stockpile of cancer drugs. In fact, it has been 30 years since a new pediatric cancer drug has been developed. A 5 year study by the National Institute of Health concluded that new drugs for pediatric and adolescent cancers are not being developed because the profit margins are too slim. Therefore mega-doses of adult chemotherapy are administered to children, using a medical assembly line system called protocols. The great need for individualized care is ignored because it is not economically sustainable.

6) Congress has approved $1.5 billion in ADDITIONAL funding to fight the swine flu. With 84 infected people, that is $18 million per person. Childhood cancer receives a TOTAL of $30 million. That works out to $750 for each child currently fighting cancer. So does any of this scare you more than the swine flu? It should. The emergency response to the swine flu had be great. But where is the emergency plan for childhood cancer? And where is the media attention? There is none. Some might say these are not a fair comparisons. Well, in one way they would be correct. The $1.5 million for the flu has been paid. The $30 million for childhood cancer was approved, but has never funded. Other issues of greater importance keep taking priority, such as $120 million to distribute free condoms in 3rd world countries (Yes, really. It's in the stimulus package). I am not criticizing the response to the Swine Flu. It fact, I believe it is an appropriate response. I just do not understand why our children with cancer deserve less. Please remember:

•1 in 300 children will be diagnosed with cancer before the age of 20.
•12,600 children are diagnosed each year. •3,000 will die of cancer each year.
•Cancer is the #1 disease killer of children ages 1-19.
•The cause of most childhood cancers is still unknown.
•Only 3% of cancer research money goes toward childhood cancers.
•There are currently 30,000-40,000 children fighting cancer in the U.S.
•The number of children diagnosed with cancer has increased every year for the past 25 years.
•Teenagers and young adults (ages 15-22) are the only age group that have flat or declining survival rates from cancer.
•In the past 35 years ONLY ONE new cancer drug has been approved for pediatric use.
•Since children can handle much more chemo than adults, most treatments are little more than mega doses of adult cancer chemotherapy treatments. The result of these high doses of chemo on children is a higher rate of secondary cancers.
•For reasons not fully known, teenagers experience the highest rate of secondary cancers as a result of the high dose chemotherapy treatments.
•Teenagers have the highest cancer fatality rate of any age group under 80. Their cancers tend to be much more rare, therefore lacking established treatments. Their cancers also tend to be far more advanced when diagnosed.
•A 5-year study at Children's Hospital Pittsburgh of UPMC recently concluded that teenage cancer survivorship is lower due in part to a lack of access to clinical trials. They concluded: "Patients who are enrolled in clinical trials offering the most advanced cancer treatments do better than patients who receive conventional treatment. Adolescents and young adults with cancer are less likely than younger children to be enrolled in clinical trials."