WEDNESDAY, AUGUST 27, 2008 05:50 PM, CDT

Well not the news I wanted to report. Actually much worse. Diego has progressive disease in his lungs. Mostly in his left but a little in his right as well. There is nothing in his shoulder though and he is doing very well after his surgery. We are doing OK. The oncologist said she is not giving up because she has seen kids survive. We are taking it one day at a time. We expect to resume chemo in about a week.

Please, leave them a quick note of encouragement in his guestbook.
http://www.caringbridge.org/visit/diegofuentes

THURSDAY, AUGUST 28, 2008 09:03 AM, PDT

For those who asked progressive disease means the cancer is in his lungs.

THURSDAY, AUGUST 28, 2008 07:47 PM, CDT

We are home. Diego is doing well. We have a big planning appointment on Tuesday and will most likely start chemo shortly after. I had a good 2nd half of day today. Frank is doing OK. Thanks to everyone for adding us to prayer chains, sending us e-mails, etc..

FRIDAY, AUGUST 29, 2008 07:48 PM, CDT

So this morning Diego begged us to go to the zoo! Poor kid has been asking since we missed going when he was hospitalized for what we believed was pneumonia. So we went. It was miserable! Hot, humid- we have been sheltered in the hospital and obviously did not watch or read the weather report. The kids did not mind one bit though. We bought a year membership as going twice cost more than that. That made it easier for us not to feel bad about not seeing the whole zoo. They did not mind either and slept the ride home. Diego knows his cancer is back and is doing fine. He does not know what it means that it is back again. I guess we don't really know either. It is in God's hands. We can't imagine life without Diego and his sparkling personality, sense of humor, big heart and compassionate soul.

But Jesus beheld them, and said unto them, With men this is impossible; but with God all things are possible.

Matthews 19:26

Thank you Andi.




SUNDAY, AUGUST 31, 2008 08:51 AM, CDT
Please pray that the powers that be can get our HMO to approve us receiving treatment at City of Hope. We received a letter yesterday stating we are not approved. At this point we believe we need to be at a sarcoma center. We also for reasons which I will not disclose online do not wish to go back to the only choice left at our hospital for inpatient treatment. As much as we love our nurses, child life, social workers and other staff at Long Beach Memorial, our oncologist no longer works there and the oncologist we are seeing is only in the hospital for rounds on Fridays. We need to be surrounded by compassionite experts at this time.




SUNDAY, AUGUST 31, 2008 08:35 PM, CDT
Please also read our previous journal entry. We had a great day today. The kids playing and just being a family. We also went to CPK or Diego's Pizza Kitchen for dinner and walked around the beautiful shopping area afterward. Tomorrow we are heading to Sea World! It is the last day of Cirque de la Mer until next summer. We usually skip the summer and make up for it in the cooler season but the weather should be nice tomorrow and the kids are so excited. We are still planning on going to Florida but are not sure if we will be able to go that same week. I sure hope so. Thank you to everyone who responded to our previous entry. We will do everything possible to be treated at City of Hope.

TUESDAY, SEPTEMBER 02, 2008 11:00 PM, CDT

Long day. Diego's bone marrow is clear- no cancer. I'll update more tomorrow on plans. To tired. We are doing well though and glad to hear some good news.




WEDNESDAY, SEPTEMBER 03, 2008 02:56 PM, PDT

Please join us and pray for Diego at 6 PM tonight. The elders at Parkcrest church and his teacher and pre-school director will be laying hands on him tonight.

Again... Please take the time to leave a brief note in his guestbook, as they need all the encouragement they can get.
http://www.caringbridge.org/visit/diegofuentes

THURSDAY, SEPTEMBER 04, 2008 05:22 PM, PDT

First I want to thank everyone who prayed with us last night. That was powerful and we were blessed to meet some incredible people. Today we signed the paperwork for a trial called D-ICE. It is dasatinib with 3 other traditional chemo drugs. The Dr hopes to start chemo next Wednesday and then we go in every 4 weeks and them take the trial drug for 17 days. We are excited about this drug as it just attacks the cancer and has shown promise in other cancers and adult sarcomas, especially rhabdomyosarcoma. The schedule means we should be able to go to Florida as planned!!!! Do we ever need that trip! After 2 rounds we will rescan and if we have stable or improved disease we will stay the course. We have 6 days to play!




FRIDAY, SEPTEMBER 05, 2008 08:10 AM, PDT

September is Childhood Cancer Awareness Month.
Join the virtual walk:
http://host.curesearch.org/...012=uyioipqyr1.app8a

Tonight Stand up 2 Cancer is on:
http://su2c.standup2cancer.org/theshow

Later in the month head to Chili's:
http://www.createapepper.com/BigDay.aspx

FRIDAY, SEPTEMBER 05, 2008 09:35 PM, CDT

After watching tonight I want to thank those who have stayed so close to me. I truly feel encircled. We really could not do this alone. I know some of you read Julian Avery's carepage. His journey is heartbreaking but his mother is on a mission. Although the words spoke tonight of his death were sad it was a powerful truth to be spoken. I am so proud that the truth was spoken. As they said the technology is in place. It is all about the money. Every 60 seconds we lose someone we love to cancer. I am very proud of this show. It does so much for awareness. STAND UP 2 CANCER! STANDUP@CANCER.org

September is Childhood Cancer Awareness Month. Join the virtual walk: http://host.curesearch.org/...012=uyioipqyr1.app8a

Later in the month head to Chili's:

http://www.createapepper.com/BigDay.aspx

"Diego will live and not die, he will tell of the works of the Lord." Psalms 118:17





MONDAY, SEPTEMBER 08, 2008 02:37 PM, PDT

So tomorrow is the big day. We will be admitted at 8 am and have an echocardiagram at 10:30 and then a CT guided needle biopsy of his lung at 1:30. Then we should start chemo tomorrow evening I believe. I will keep you updated as I can. We hope to be home on Sunday.





TUESDAY, SEPTEMBER 09, 2008 09:56 PM, PDT

We are home! The trial drug has not reached the hospital yet so we will start chemo tomorrow- for sure! It was a very long day. Echo at 9am them CT needle biopsy at 3 which went the best possible. It only took 15 minutes! Diego did not wake up until 5 though. He woke a little then went back to sleep. Then we x-ray his lungs to make sure there was not a puncture. We go in tomorrow at 11am for chemo. Diego did so well today and everything went great. He was happy to come home tonight. Our nurse Ginger was great as were all the nurses at the infusion center. Dr. Sato is awesome as well. We also received a written confirmation that insurance is covering us at City of Hope! More good news to come.


"Diego will live and not die, he will tell of the works of the Lord." Psalms 118:17





THURSDAY, SEPTEMBER 11, 2008 01:17 AM, PDT

I finally surrendered. When Diego was first diagnosed friends said set up an account. When Diego relapsed friends, family and acquaintances said set up an account. This time around after seeing my husband stressed over our financial matters agreed. It was not easy but so many send us checks and I would like for you to at least get a tax write off. I will post the information in the my story section. Please do not feel obliged to send money. Your family is always first and your prayers and messages, and support are more important than money. We have received a scholarship from the Pre-school board for Diego to go to school and Diego's pre-school teacher managed to get Diego on the front page of a local newspaper today called The Sun Newspapers and the fund she helped me set up was featured. The article was already printed before we came home last night to find the letter that we are approved for treatment at City of Hope. Since we are out of network the cost will be higher but nothing close to the real cost which would anywhere from half a million and up. I can forward the article to those interested- just e-mail me at MichelleFuentes19@hotmail.com. If I can find the link to the article I will post that as well.

Romans 8:28 -
And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.





FRIDAY, SEPTEMBER 12, 2008 01:55 AM, PDT

The Bumpy Road to the Hospital
We started chemo a day later than anticipated this week. This meant leaving Lilia twice telling her we had to go to the hospital. Both days she was absolutely hysterical. Crying I need my Mommy, I need my Daddy! She now refuses to say goodbye to Diego or hug him goodbye. She told me she did not want Diego to get hurt at the hospital. Diego was fine the first day but the second day we left he was asking why me? Why is it only me? Why me Mommy? I'm not going! I told him that I thought he wanted to fight. He said no I don't. I said you know what will happen if you don't and he said I don't care. He was having his own meltdown at this point. Once he calmed down in the car he said I do want to fight Mommy but it is just so hard. We work so hard to be positive but times like those break you down a bit. The kids are resilient but as we embark on this 3rd year of fighting- most of Lilia's life and almost half of Diego's I sometimes wonder why me too.
Diego thus far is handling the chemo very well and Lilia was with us all day today. She is acting up a bit but happy to be here. This seems to set Diego off too so Mommy and Daddy had our hands full on very little sleep. Frank took her home and spent the night and will bring her tomorrow for a few hours. I will go home tonight to try and get a bit of sleep while Frank stays here and will bring Lilia on Saturday. God is holding it all together for us.

1 Corinthians 13:13
And now these three remain: faith, hope and love. But the greatest of these is love.






SATURDAY, SEPTEMBER 13, 2008 07:55 PM, CDT

Reposted Fron People Against Childhood Cancer


Today is Childhood Cancer Awareness Day. September is Childhood Cancer Awareness Month. Each day, 46 children are diagnosed with cancer. Each day, 7 children die as a result of childhood cancer. It is the number one killer disease of our children, more than more than from asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined. Did you know that 1 in 300 children will be diagnosed with cancer before age 20 and that 35-40,000 are in treatment every day? Yet only 3% of all cancer research money goes to childhood cancer. Our war against childhood cancer is vastly under-publicized and under-funded. It is another Inconvenient Truth America needs to be aware of.




I don’t know if your readers have ever been on a pediatric oncology floor. If they have ever walked the halls and seen the smiles or tears on the faces of these little fighters as they play on the little trikes and big wheels. How the moms and dads race behind them with the ever present IV pole. How they have little child-sized masks on because they are at high risk of infection. How the teens hang together and still try to be cool, even though they’re bald and ready to throw up at any time. How the teens have added words like methotrexate and acronyms like ANC to their vocabulary, instead of LOL and "sweet". How the poor little baby's cry because they can't even relate what hurts. Or if you've ever seen a mom or dad alone in the break room at 3 am, with their head in their hands, feeling alone, helpless, scared and mad. I don't know if you've ever visited a Care Page or a Caring Bridge site, blogs where we tell our kid's stories. I've seen it all and more. In December 2007 I had AJ, my 14 year old son ask me, "Dad, what's hospice". I have seen enough.



So, please support this cause. CureSearch is the largest childhood cancer organization and its members treat 90% of the cases nationwide. Donate at CureSearch.org. Join the People Against Childhood Cancer group at http://curechildhoodcancer.ning.com. Sign the Petition to Raise Awareness at www.thepetitionsite.com/1/CureChildhoodCancer.


Do something…….the life you help save may be your child’s.

AJs Dad
Wake Forest, NC

MONDAY, SEPTEMBER 15, 2008 09:38 PM, PDT

Diego is home and well. We arrived home just before 5. Diego needed a blood transfusion before we left. I'm exhausted and overwhelmed. Will try to fill in the blanks tomorrow.




TUESDAY, SEPTEMBER 16, 2008 10:07 PM, CDT

Sorry that I did not update sooner. I'm trying to grasp some reality here but yet would rather not grasp that reality and stay suspended in each smile and laugh and incredible cadence of Diego's voice. Last week was rough but not so much for Diego. Lilia is obviously suffering now. She at 3 for really the first time in her life has separation anxiety. Lilia has been acting like a baby and has also been acting out. We sent my Mom and Aunt Jenny who home after one day as Lilia obviously needs to be with us. This really does complicate things but for now we must just do it. I feel like a rubber band pulled between two children who need me. Coming home was hard. The hardest part of this process can be the nightly shots known as GCSF. Poor Diego is so traumatized by these. The shot burns. He get is for at least 8 nights in a row. Diego called me into his room last night. He just wanted to make sure I knew how amazing gorillas are. He asked me if they needed water. I said yes an he said no they get all there water from eating fruit. They are so smart. He then told Frank that he was going to be a teenager, then a scientist and then a Daddy with a goatee! Daddy has one! He melts our hearts- always has. We now are waiting to see how low his counts go with this regimen and for how long. Please pray that Diego continues to be the rubber band as well and snaps back quickly with no fever stay. Not sure if Lilia's heart can take it. Pray for Lilia as well.

He just wanted to make sure I knew how amazing gorillas are. He asked me if they needed water. I said yes an he said no they get all there water from eating fruit. They are so smart. He then told Frank that he was going to be a teenager, then a scientist and then a Daddy with a goatee!

I usually just lurk in this thread, reading the posts as they come, but I had to comment on this- this kid is awesome.

THURSDAY, SEPTEMBER 18, 2008 02:09 PM, CDT

One night leaving the hospital with Frank Lilia was shrieking I want my Mommy. Diego began to cry. He is such a good brother. So far Diego seem to be doing well with our trial drug Dasatinib. We are having a nice day at home. Diego can't wait to go back to school. I'm hoping next Wednesday. Please sign this petition in an effort to get people to think gold for childhood cancer like the think pink breast cancer campaign. http://www.thepetitionsite.com/...on-consumer-products




FRIDAY, SEPTEMBER 19, 2008 09:25 PM, CDT

Diego's Pre-school teacher and I opened Diego's account yesterday! I opened the envelopes sent and was overwhelmed with emotion. We have received about $1800 dollars so far. When someone sends you $23 in cash it makes you realize that they sent all they could and sent it from their heart. Every donation from $5 dollars to $500 really means so much to us and the letters where all so heartfelt. All the prayers and words of encouragement. Seeing Diego on the front page of the newspaper on September 11th was surreal. How can that be our child? I wept. How can this be? I don't have those answers but I know many have been blessed by our journey. I know that we have felt the presence of God in a spiritual way that I could of never imagined. All of my doubts erased. One reader has a child whose daughter is a cancer survivor and his son is an very young golf phenomenon added Diego to his website : http://jadencantafio.com/THANK YOU EVERYONE!!!
.
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We are going to have a family photo shoot tomorrow morning at 9 am at Miller Children's! It is sponsored by http://www.holdenshopetrain.org/ I am very excited! Then we are off to City of Hope for blood work. Hoping we do not need a transfusion. Diego did have a 100 degree fever after his nap today but it went away. Praying it stays away. At 101.5 we are admitted. Chanting Go Cells Start Fighting! GCSF! The name of the shots but with a new acronym. I will update tomorrow. Thanks for reading and leaving us messages.





SATURDAY, SEPTEMBER 20, 2008 10:23 PM, CDT

First of all no fever! Diego has no white blood cells though or .4. He also needed potassium and platelets today. We arrived home at 7:30 tonight! Frank was at work so it was me and the kids from 12 until 5:30! Long Day. The photo shoot was a bit hard. Diego did not want to participate but he eventually warmed up after another person went before us. Try to get 4 people, well two adults who are wrangling two kids to pose all together! Still there are some good shots of us all and just Diego. As soon as I get the CD I will post a few pics. I did not want to post yesterday but City of Hope is not getting paid by our HMO for previous services. Basically they just want there money and don't care from where. I called the HMO and told them I have no time or energy to keep being the middle man and just want to know if I need a lawyer. Suddenly they were willing to call and talk to City of Hope. I think that is a good sign. Really I have more to worry about than that right now and I refuse to waste my energy. If they do not resolve it I will have to contact a lawyer. Can't worry today about what may happen tomorrow!
*
Matthew 6:27 (New International Version)
Who of you by worrying can add a single hour to his life?





TUESDAY, SEPTEMBER 23, 2008 07:14 PM, CDT
Diego is going to school tomorrow! His first day in his new class. He has been having headaches since Monday. It is a likely side effect of the drug he is taking everyday but they make him really sad. Tylenol gets rid of them though. He is also experiencing an itchy bottom. He has had this before but it seems a bit worse this time. He says poor me! The day before our trip to Florida he does not have any oral chemo from then for a few weeks. 10 days until our trip!!! Amazing!

THURSDAY, SEPTEMBER 25, 2008 08:55 PM, PDT

Well Diego will have to miss school tomorrow. He needs a blood transfusion. We received a platelet transfusion on Wednesday and found his ANC is still very low! We have only had platelets once before this! This chemo is kicking his butt! Speaking of it has been really painful for his to have a bowel movement although they are really soft. His headaches are being controlled by tylenol but now I can't tell if he gets a fever! He is acting much more energetic this afternoon and evening though. Hopefully after our transfusion tomorrow the headaches will get better. Monday Make-A-Wish is throwing a Bon Voyage Party for Diego at Chuck E Cheese. I don't really like the place but Diego has been wanting to go back for months and this is his party! LOL! I'm sure we will have a great time! Diego is also going to Walking With Dinosaurs this Sunday.

SUNDAY, SEPTEMBER 28, 2008 09:21 PM, CDT

Diego and Daddy went to Walking With Dinosaurs at the Staples Center and it was AWESOME! We hesitated in buying tickets and only bought the two but are so glad we did! Diego and Daddy loved it! Diego has given me a play by play and has been acting it out since he got home!

Don't forget to go to Chili's tomorrow!

Also Diego's allergies seem to be acting up. Please pray he will be well for our trip on FRIDAY!!! So excited- already packing!




MONDAY, SEPTEMBER 29, 2008 10:06 PM, CDT

We had such a great time at Diego's Bon Voyage party! Diego said the pizza was delicious and cake was too! The woman Marie from Make-A-Wish really made it special with Buzz Light Year Decorations and cake. The kids had a blast. We also received our Wish Flight T-Shirts. Our Trip is titled, The Enchanted Journey Continues. Pirates and Princesses. We cannot wait!

WEDNESDAY, OCTOBER 01, 2008 02:42 PM, CDT

The Diego Fund has accumulated about $7,000 dollars! We are so grateful to everyone who has donated. We are so touched that complete strangers would reach out to us and our friends and family who continue to support us. So many encouraging letters and prayers. My sister's 24 year old friend sent us a check for $1,000 dollars! I emailed her saying I hope this is not just from you. She explained that she had saved to visit my sister in New York but with the circumstances changed my sister came here and she decided we needed the money more than her. She said she loves us and we are part of her family of God. I'm crying again thinking about it. Children have sent some of their savings too. This is putting a big dent into our bills and expenses so far and is relieving a lot of stress! Thank you everyone!
We go in tomorrow for more blood work. Diego's white blood cells were 1200 on Tuesday! Finally going up. We need them to be really high tomorrow though so we do not have to take the shots to Florida with us. He also needed more platelets as they were on 9! I hope those are showing they are making there way up on there own as well so we do not need any blood work to be done on our vacation. We are so excited! I am 90% packed. Diego has also had two great days at school this week without me staying with him. We get back from our trip next Thursday and check in for 5 day chemo on Friday.

FRIDAY, OCTOBER 10, 2008 07:47 AM, CDT

Hi everyone! We made it home safe and sound. Florida was great but Diego was having migraines and was pretty tired much of the trip. This kid has always been a big napper. He also ran a low grade fever the last night there and last night at home. We did have many good times and I will fill you all in later as we are exhausted and due at the hospital for his 5 night chemo at 9:30 am this morning! Diego still has a cough. We called the Dr yesterday and she will most likely put him on antibiotics in the hospital. Pictures and details to come!





SATURDAY, OCTOBER 11, 2008 08:09 AM, CDT

I wish I was updating to tell you about our trip but there is no time right now. We did a CT of Diego's head and it shows two tumors in the cerebral fluid around his brain. We will follow up with and MRI and surgery. Hopefully there are no other tumors as the neurosurgeon said he can easily remove these tumors without complication. The team here has been awesome. We are not giving up but this is not good. He will no longer be on the chemo he just had. Frank is considering going to Canada. The oncologist is willing to discuss all of our thoughts about traditional and non traditional treatments. She is calling her friend at NCI about some options as well. We truly are surrounded by the best professionals possible here who truly care. Diego is on a steroid and has had no further headaches. All I can do is hold on to Diego with everything I have.

SATURDAY, OCTOBER 11, 2008 06:27 PM, PDT

I wanted to clarify. Looking back we believe these brain tumors are not new. Diego was having problems for a few days that I was really worried about back in late July I believe. He was not able to walk and his foot would move involuntarily. This was not the first time but the first time it was very noticeable. He would be unstable on his feet for an hour at a time and then be fine. His head has never been scanned as this is not a typical place for relapse. We almost asked for a scan but this happened before we knew about his lungs and was quickly dismissed as neuropathy by us. It cleared up before we started any chemo. We did a chest x-ray last night and see if the disease has improved there. The two tumors we see know are small. One is less than 1 cm and the other about 2 and a half centimeters. Since we cannot compare we only have the new symptom of the headache. I will talk more to the neurosurgeon and oncologist on Monday.

SATURDAY, OCTOBER 11, 2008 08:09 AM, CDT

I wish I was updating to tell you about our trip but there is no time right now. We did a CT of Diego's head and it shows two tumors in the cerebral fluid around his brain. We will follow up with and MRI and surgery. Hopefully there are no other tumors as the neurosurgeon said he can easily remove these tumors without complication. The team here has been awesome. We are not giving up but this is not good. He will no longer be on the chemo he just had. Frank is considering going to Canada. The oncologist is willing to discuss all of our thoughts about traditional and non traditional treatments. She is calling her friend at NCI about some options as well. We truly are surrounded by the best professionals possible here who truly care. Diego is on a steroid and has had no further headaches. All I can do is hold on to Diego with everything I have.

MONDAY, OCTOBER 13, 2008 10:46 AM, CDT

Diego will be having his MRI at 12 noon and surgery this afternoon which will be about 4 hours. We will be in the ICU tonight and I don't have computer access from there but will try to get someone else to update.





MONDAY, OCTOBER 13, 2008 11:52 AM, CDT
Sorry guys my messages have been a bit unclear. Diego will have surgery using the latest technology to remove at least one of the tumors in his brain. We pray the MRI shows only these two tumors and that they are as accessible as the surgeon believes. We also pray for a painless and speedy recovery.





MONDAY, OCTOBER 13, 2008 04:12 PM, CDT
Diego's surgery will be first thing tomorrow morning. There are three areas. Two will be easy to remove but the third is so small that it might not be feasible. Keeping praying. We are staying strong. Diego's surgery will be about three and a half hours and recovery 2-3 days or when he has no need for pain medicine.