THURSDAY, DECEMBER 25, 2008 09:26 PM, CST

Diego died in our arms surrounded by people who love him. He started having breathing problems the night before and went from 4 liters of oxygen on the nasal cannula to 10 liters with a mask. At one point his saturation was only 72 and his heart rate was falling to 87. He had been at 97- 98 breathing saturation and heart rate of 130's. He was working so hard to breathe. His heart rate went up to 183 and 100% saturation but still was struggling to breathe and it just did not stop. I think a tumor in his lung burst and took over what was left of his breathing space. We told him about an hour before he died he could rest now, that he could stop fighting. He said I want to fight. He was so loving up until the end. Leaving him cold and alone in his bed was the hardest thing we ever did. We know he was not in there but it is hard to except. We miss him so much but the gravity of the loss has not really sunk in so I imagine that this will get harder. For now we watch videos and look at pictures. We cry uncontrollably but also still laugh. It does not seem real.

Some people in life get dealt a hand seemingly so unfair as to be overwhelming, crushing even.

Its amazing the bravery Diego has shown in the face of Cancer. Most adults dont have that resolve.

Saddly it doesnt sound like is fight is over.

Wow, that's quite a kid. I see why he's your hero, Adam. Oh, and uh, what's up with the ghost legs?

GOOD NEWS! The lymph nodes and bone marrow are clean!! Pathology still shows embryonal subtype and 70% necrotic tissue! Me and Frank actually let out a huge sigh. I have a lot to say but not much time. Will update later tonight.

The next update is about how wonderful people have been to us already. Bringing lunch and dinners. At Frank's work people are donating there vacation days. One of his colleagues donated a whole week! Another is working on setting up a fund. Diego's preschool has offered to let us use the playground when school is out and the volunteer said she would clean a classroom for Diego to come and play when he can't attend school. Not to mention all the people who have told us that they are willing to help when we need it. It means so much to us and has brought us to tears. It gives us strength and hope knowing we have so much support and prayers all around us.

Diego received the coolest gift from our Parkcrest Teacher family. A giant T-Rex puppet. It is almost as big as Lilia. He LOVES it and said it is the best T-Rex he has ever seen and napped with it today. I'll have to post of picture of him with it. Last night I went to Mom's night at Diego's school and it was so precious. He made me a necklace. When I tried to help him he said I can do it myself. Then they sang the sweetest songs to us. We then all got together as a school and sang songs. I was glad we could go. Keep praying for us. Diego told me a friend in his class can do lots of cool things he cannot do on our way to the park today. He said he can do a handstand and I can't. He then broke down and cried. I told him there would be thing that he cannot do but that there will be things he will be able to do that others cannot and that his friends like him whether he can do a handstand or not. He said thank you and sang one of the song from the previous night, You are my Mommy (You are my Sunshine tune). It was really sweet. I knew he had these feelings and was really glad that he finally shared them with me. Keep praying for us. Especially Diego.

You know it is stuff like this that restores my hope for the climbing community and makes me proud to be a part of it!

Go Diego!

Thanx Marge, Brad, Todd, & Andrea for signing his guestbook... It meens a lot to him and his family to know that so many people care.

Diego's actually looking forward to getting a "robot arm"...
He's gonna be the bionic boy.

Not gonna lie, bionic arms are pretty friggen sweet. So is he definitely having the amputation?

MONDAY, MARCH 03, 2008 02:19 PM, CST
I'll start with Sea World. We had a nice time but Diego was really tired as he was in much pain the night before and woke about 3 times. He did sleep for an hour on the way to Sea World but apparently that was not enough. Our friend Julie bought us dine with Shamu tickets and he was so tired that he really did not enjoy the show until one of the orcas splashed him in the face! Then he was excited. Lilia loved it.

We met with the oncologist today and Diego's surgery will be next Wednesday to amputate his arm. We will have a 3-5 night stay depending on his pain. The oncologist proposes we follow up surgery with 6 months of chemotherapy using 2 drugs. Adriamyacin and Ifosfamide and possibly radiation later on to his lymph nodes. We will talk to Dr. Calderwood and see what he thinks. I'm a bit tired so that's all for now. Feel free to ask questions in the guestbook and my personal e-mail is: MichelleFuentes19@hotmail.com

SATURDAY, MARCH 08, 2008 09:16 AM, CST
So our fight against cancer began just weeks before Diego's 3rd birthday. We spent 10 days in the hospital and for the first time I saw Diego shut down. I started to worry and realized that we could not do this alone. We needed to work on our relationship with God. Diego of course came home from the hospital and bounced back to his spunky self. We bought him a Doctor's outfit so we could do play therapy. That is when I realized how I has a Mother was able to get though all we had been through. Diego was always a fighter. Whether it was at therapy while they were stretching his hand or if he wanted to do something and we said no. It was exhausting at times. This spirit carries over to learning and love for his family and friends as well. When Lilia was a baby and started sitting I would take her out of her sling and sit her on a blanket to play while we at the park. If any child got close to her he would get right in front and say, "That is my sister!" I would tell him it was OK and he would say no it is not! As she got older if she started playing with other kids he was always by her side making sure the kids were nice. He would watch her with an eagle eye across the park. He never backed down.

I share all this as we have many new readers. Of course you can go back and read the journey of the last year and a half. Diego has always been the kid to make friends in a minute with kids and adults. I know that him losing his arm may not be easy but I do know he will adapt and exceed our expectations as he always does. He is a lot like his Mother. Although his life has different challenges than mine he has the same spirit. That is how I know.

So tomorrow is a big day. We meet with our oncologist in the morning while Diego is at school and talk about our next course of action. We then have to be at City of Hope at 2 for pre-op blood work and exam. We are all having a bit of a ruff time right now. Not sure if I will update before surgery on Wednesday but will try to update after surgery.
As I'm sitting here typing this I noticed the hummingbird outside the window. It always seen to come around when I need extra strength but I was so in a daze all I thought was that it was strange that it was actually coming right up to the window screen. Then I was here looking at our friends blog and the hummingbird came back and did the same thing. As soon as I realized that this again was my little messenger saying things would be OK he dashed away! Thank you God! I needed that!

Just wanted to let you all know that Diego is out of Surgery and is ok. He is in the NICU.

Karen

The surgery went well and he will be held in ICU over night for observation. Diego is awake and hasn't been in any pain. When they have a chance and internet access I'm sure they will update.

Sorry it took me long to update. We now have internet here as we moved out of ICU! Diego did have some pain last night but not to bad. Today he is doing great. His first reply when he was half awake from anesthesia was I have a little arm, now I can't pray! I told him all he needed to pray was to simply talk to God in his own mind and that there is no correct way to pray. He does not want to move much yet but his spirits are up. I will try to update more later. Keep up the prayers. I know they have lifted us as I was not afraid even when they (s)aid we would spend the night in ICU because he received 10X's the normal dose of morphine to control his pain during surgery. I knew he would be fine and he was. Woke up better than ever. Well Diego calls. Update when I can.

Love,

Michelle

In my dreams last night Diego still had his arm. It was in much pain. I wonder how long it will take for me to dream of him without it. Our oncologist said many of his teenage patients take 7 years to dream of themselves without it. I do not miss his arm. It has been a source of great pain but I do worry of course about how it will affect his self image but am quite assured that he will be just fine. He always makes new friends of all ages wherever we go. As a mother though you know that it does not change one bit how you love and perceive your child. Just knowing that this surgery will most likely save his life puts it into perspective. Today he said Mom this is my good arm and this is my bad arm. I said it is not bad and soon it will be your super arm when you have your robot arm. He had a big smile on his face.

I am not going to pretend that being here is easy but I cannot say we are devastated. We still have our baby. It is not going to be fun but you have to keep your eyes on the prize. When we talked to child life before Diego had surgery they gave him a bear with its arm amputated at about the same place and wrapped in an ace bandage like his is today. He brought it with us along with his puppet T-Rex and books and some dinosaur figures. Well today a social worker gave Diego two dinosaurs. One was a maybe a little bigger than a beany baby sized T-Rex that looks very much like his puppet T-Rex. He really liked it but then said I will give this to Lilia. Then he said she can have the bear too! So sweet a he really treasured the bear and really liked the T-Rex. She was so happy and I think it is now going to help her deal with her brother's arm. All the nurses can't stop saying how cute Diego is. I have a whole gratitude piece to write but will save that for tomorrow or the next day depending. Thank you all for signing the guestbook and keeping us in your thoughts and prayers.
Love,
Michelle

FRIDAY, MARCH 14, 2008 04:47 PM, CDT
Looks like we will be going home tomorrow! Dr. Femino said Diego is doing better than any kid he has seen and healed amazingly. He said he needed to get out of bed today. We did and he has not been back in bed since! We played video games, scaled the library bookshelf- yes I'm not kidding and had a great time painting, playing with toys, and playing soccer in the playroom. He told me he likes his little arm. Amazed is just not enough to describe how I feel. I think I am just in awe of him. He has yet to get frustrated. I think I will make a slideshow if I have time tonight and post the link. Keep praying. I hope to take Diego to school next week.

What keeps me going besides faith? The kindness and generosity of so many people. Knowing so many people genuinely care about us. Some people who are our closet friends and family and others we have never met. All the prayers and encouragement. I feel like we have so many families out there surrounding us. Diego's school said when Diego has a low immune system he can go after school and they will sanitize a room for him and we can enjoy the playground! People sending card with kind words, leaving messages here and to my personal e-mail, hearing about all the churches and groups praying for us and people cooking us meals. Just last week two people who have never met us gave us incredible gifts and made us both cry. The first was a friend of Diego's teacher who wanted to makes sure we knew about Make-A-Wish foundation. I explained we did and were waiting to find out if we were approved for Give Kids the World our first choice or Disneyland our second choice as Diego had never been. Well this friend offered to send us to Disneyland. I wanted so badly to say no but all I could do was cry as I was so touched that someone who had never met us would want to do that for us. She did not know that we had planned to go to Disneyland after we caught up on bills from our previous years battle with cancer but now I knew we were headed for more of the same so we would just wait until after treatment for our Make-A-Wish as Diego will be in the hospital our have a low immune system for most of the next 6 months. Diego had been talking about going to Disneyland and I felt bad having to postpone but Disneyland is very expensive and we really are in no position to go. So now we are going to Disneyland and Mom does not ever have to regret not going or ponder it during treatment. I am just so touched that someone who has never met us would care so much as to do that. Later in the week we received $250 dollars from a woman that only knows me via the internet through a site I joined when I was pregnant with Lilia. Also Frank has had two guys at work donate a week each of there vacation time. I told Frank we could not take that much but they both had extra time banked from the previous year. Made me feel better but what person would not like to spend an extra week away from work? VERY generous. I don't think gratitude is a big enough here as it is so much more profound and moving to have people supporting us in so many ways.

I'll leave you with this: http://www.rockyou.com/...instanceid=105956746

We are home! Left the hospital at 12:30, ate lunch, played a little and we napped with Diego. Still not unpacked but that will happen. My Mom is making a St. Patrick days feast. Lilia and Diego helped make the Irish bread and decorate the table. They loved it. Very tired parents. Please pray Diego does not have pain tonight. It seems to come on at night. I will be waking every 4 hrs to give him pain meds.

Diego had no pain at all last night!!! He seems to be adjusting well to his amputation. He did have a melt down when we put his long sleeved jacket on yesterday. He wanted part of his arm to stick out but was nervous about us fixing it. Today though he was fine when we put it on for a walk. I'm glad it is warm enough for short sleeves as that is what he is comfortable in. he constantly reminds me he only has one hand. PaPa had his mandolin on Saturday and the were singing songs. I went to get him a maraca and he said just one Mommy I only have one hand. I said I know baby. He also ask for help when needed with confidence which is nice. He also told me today he only has 5 fingers and when Frank and his were playing and Diego was the villain Frank asked his which villain he was and he said the one armed bandit. He actually makes jokes about it! We have had to help him with so many things already because of the limited function he had that it has not changed our life much. We went to the aquarium today and it was really nice. We also found out from Make-A-Wish that we are going to DisneyWorld and staying at Give Kids the World. The lady said Mickey would write him a letter so he had something to look forward to after treatment. I cried after getting off the phone. I can't wait to take them and completely spoil them for a week. Here is the link: http://www.gktw.org/

We go see Dr. Femino tomorrow and will have our first chemo in about 2 weeks. Once we figure out the exact plan. Diego is going to school tomorrow.

I feel like I am running around 100 mph but can't seem to get it all done! My brain is not working so well. I have been trying to get our house in tip top order as I know that will go to the wayside the next 6 months and of course focus all my energy on the kids. Leaves little time though for the mind to wander. I am also reading a new book given to both of us by my dear friend called The Purpose Driven Life by Rick Warren. I talked to our oncologist on Tuesday and we will start chemo on Friday April 4th. We could start a week earlier but we want to go to Disneyland after Spring Break and I feel Diego really needs that one week of school before we start chemo again. We will have a five night stay. We saw Dr. Femino today and the pathology confirmed clear margins and that it is all embryonal rhabdomyosarcoma. Thank God. That is good news. Diego was really nervous about seeing him today and is scared about his prosthetic now. He will not be fitted for about a month and then we have to wait for it to be made. Not sure how long that will take but we will know more when we see the prosthesis doctor in 2 weeks. We are working on really explaining this to him better and the Dr. will show him too. Oh and the pre-school director told us that Nick Vujicic will be speaking at her church. He was was born without limbs. Check out his story here: http://www.lifewithoutlimbs.org . What timing! As Mrs. Henderson said- God timing. We are very excited to have this opportunity. Also we were unable to attend the St. Patrick's Day (patron Saint of Ireland) bash at my Grandma's house and they took up a collection along with cards for us. Thank you all so much! We are taking Diego to the Discovery Science Center tomorrow. Last but not least Diego is on the flyer/poster for this year's torch run. Check it out here: http://www.jjccc.com/ . You can find our page under Michelle Fuentes under Search for Fundraising Page on the left hand side. Click on 2008 Torch Run tab too. OK- I hope this all makes sense- I am tired.
Love you all,
Michelle
Faith is the reality of things being hoped for. The evidence of things not seen.
Hebrews 11:1

Wow! $500 dollars already raised for the torch run! Awesome! We have been very busy. On Friday we went to the Discovery Science Center in Santa Ana. They have a great Dinosaur exhibit and there was a fantastic bubble show. On Saturday Diego's cousin Javiera and her Mom (Frank's Aunt) Angie flew in. The live in Chile. They left here this morning for Florida. We had a wonderful visit and the kids loved every minute. On Easter we had dinner and our Easter Egg hunt with my parent's at our dear friend's house. It was so yummy and fun. I cannot believe in 9 short days we will check into the hospital. Yesterday we went to Mission San Juan Capistrano and it was beautiful. We ate lunch and checked out the train depot. We will have to go back there again it was very nice. Today we walked to a park and played tennis. Diego still is great, even with 1 arm and played at the park which included picking up trash, rolling down the hill and eating lunch. Diego cannot wait to go back to school next week and DISNEYLAND on Wednesday! We are all very excited to go to the happiest place on earth! So as you can see we have been living life to its fullest.

TUESDAY, APRIL 01, 2008 01:19 PM, CDT
Disneyland was incredible! At first Diego was a bit overwhelmed and we made the mistake of going on Snow White as our first ride. He left crying. Pinocchio was a bit better but still scary. Then we went on Mr. Toads Wild Ride and Peter Pan and he loved them. Especially Peter Pan. By 10:30 a.m. we had been on all of those plus, Dumbo, The Circus Train, Storybook Boat, and Alice and Wonderland! Next we headed to Pirate's of the Caribbean which was both of their favorites. I was sure Diego would be scared but not at all. Then we headed to the Jungle Cruise which they both loved. After lunch we headed to Toontown. That was great fun to just run around and play. We also saw Minnie, Pluto, and Goofy. Pluto hugged and patted Diego on the head but we could not get a good picture as everyone was swarming him. Lilia wanted to have no part of getting close to the but waved. We also found out that Diego does not like rollercoaster's but Lilia loves them. Also Lilia wanted to freeze more often than not so she could show off her Minnie Mouse shirt. We then headed to the Buzz Light Year ride which Daddy and Diego loved and then Nemo. After that it was parade time and the waiting for that was pretty painful as Lilia's lack of nap had her a bit delirious. As soon as it started though they we blown away. Next off to dinner, more Lilia breakdowns and I was certain we would have to leave soon. We had to tell to eat or no steamboat ride which we could see and hear from our table. Once we went on the Steamboat Lilia really calmed down and Diego absolutely loved it. Then we were off to Pirate's again and ended the night with the Disneyland Train. Mickey, Pluto and Goofy were on the next car! Mickey kissed us trough the glass! They were being really silly. The kids loved the train ride, especially the dinosaur exhibit which was really impressive. We walked out of the park at 10:30 p.m. Both kids asleep in the stroller. Diego woke up this morning, put on his Buzz Light Year hat from Disneyland and grabbed his Buzz laser shooter and said, "Hi Mommy can we go to Disneyland again?"

THURSDAY, APRIL 03, 2008 09:27 PM, CDT
Chemo tomorrow! We went for our pre-treatment labs and check up today. Diego did really well. He left and said that was easy. Thank God. I was about to cry as I swiped our yearly parking pass at the entrance. Please pray that Diego does well these next 6 day/5 nights.

We had Diego's sutures removed on Tuesday. We gave him Ativan before the appointment and he did really well! We then saw the prosthesis Dr. He will order a special sock called a shrinker that Diego will wear for 2-3 weeks and then he will be mold casted for his prosthesis. So it will be a couple of months. We see Dr. Femino and his eye Dr in 3 weeks. I will update from the hospital.

Psalm 34:4
I sought the LORD, and he answered me; he delivered me from all my fears.

FRIDAY, APRIL 04, 2008 09:14 PM, CDT
Diego has had a fantastic day! He was nervous when we arrived but shadow the dog was here playing her piano and performing other special tricks. Talk about timing! Next Diego painted a wind chime and played with some animals in his room. Then at 2 back in the playroom to make a heart shaped box. He covered it in sand with glue and then decorated it with shells. He has not got sick once and has been eating like a champ!

. . .

FRIDAY, APRIL 04, 2008 11:40 PM, CDT
Still doing great. Diego is sleeping. Here is our Disneyland slideshow:
http://www.rockyou.com/...instanceid=108567285

Pastor Bill asked Diego what his favorite place was and he said, "DISNEYLAND!"

. . .

SATURDAY, APRIL 05, 2008 08:50 PM, CDT
Day 2 is done. 3 to go. Tomorrow he will finish a 48 hour infusion of Doxyrubicin. He still is doing well physically but had a couple of I want to go home crying fits. His appetite was OK today but he also slept more.

SUNDAY, APRIL 06, 2008 09:32 PM, CDT
Diego is still good health wise. Homesick but left the room for over an hour and had fun in the playroom with Lilia. We were really concerned about Diego getting sick as he would throw up so much with is one night stays. 15 plus times and at the end there would be some blood. This would have been devastating since he already is on the slim side. He is on a constant zofran drip, along with periodic doses of benydrl, reglan, prevacid, and decadron. We are so thankful that he doing so well but he is sad to be here.

. . .

MONDAY, APRIL 07, 2008 07:09 PM, CDT
Diego did much better today! He was being a goofball most of the day. I think being off the other chemo really helped. We all cannot wait to go home. Lilia had a great time visiting this morning.

. . .

TUESDAY, APRIL 08, 2008 08:27 PM, CDT
Another great day! Diego has been really silly. He was scratching his hair today and I said are you itchy and he said I'm tying to look like a Pachycephalosaurus (yes I looked up that spelling). Later I moved him on up on the pillows on the bed and put his DVD player between his legs. He said that I am not comfortable, I look like a snow angel! So as you can see spirits are high. Only concern is a dry cough. Please pray it turns out to be nothing and he stays well. His WBC will be going down which are what give you the ability to fight infection. Hopefully we will be going home tomorrow early afternoon. We can't wait.

WEDNESDAY, APRIL 09, 2008 09:34 PM, CDT
Little Miracles! Diego did so well. Not throwing up and actually asking for food! He did not need a feeding tube! Amazing. Nothing seemed to work to control his nausea before. Thank God! He has truly protected Diego.

Thank you all for thinking about and praying for us. I am exhausted and far behind with my thank you cards. I cannot wait to get to them. Hopefully tomorrow. Just know I am so thankful for all the support here and through e-mails. Just that means the world to us. Keep praying that we stay fever free and out of the hospital. We go in for blood counts and exam next Thursday.

. . .

THURSDAY, APRIL 10, 2008 03:55 PM, PDT
Diego is still doing great. A few things I left out of our hospital stay. We reached the 3rd floor on Friday. Waiting for the secretary to get off the phone I just started bawling. Nurses hugged me others gave me compassionate looks and the child life and nurtitionalist quickly walked us to our room. putting there arms around me as we walked. It just reminded me that we came back to right place. They truly care for our family. We had a great conversation with our social worker and our favorite nurse told us he was really sorry and cannot imagine what we are going through but to please let him know if he can do anything or if we just want to be left alone. Whatever, he understands. I could go on forever about what a great person this nurse is and how excellent he is at his job. The child life specialist showered Diego with gifts and found all the toys he loves to play with. Then before we left the nurse coordinator who is a cancer survivor herself heard that Dr. Calderwood wanted to send us home with a little catheter in his leg so we did not have to poke him every night for his GCSF and she remembered she had a sample and brought it up for us to use! They really are like a family there. This is why we love our unit and so much more.

WEDNESDAY, APRIL 16, 2008 10:13 PM, CDT

Sorry it has been so long since we updated. I think we officially avoided a neutropenic fever! His white blood cells are going up. Diego did have a fever these past 3 nights but they were just below 100.5 and went away. We may still need a platelet transfusion. Diego has mouth sores and has to eat soft and cool foods. We are all struggling with being back in the fight but are grateful that we are blessed so far. We plan on going to school tomorrow. Diego wants to go but insists I stay with him. Frank is home on stress leave so that makes that easier. We see the oncologist and Diego will get fitted for his prosthesis tomorrow and then we see his oncologist at 4. On Friday we are going to California Adventure thanks to free tickets from a neighbor. We are so excited!Then the following Friday we are in for round 2. Thanks for continued prayers. We will have scan again after his 3rd round of chemotherapy.

SUNDAY, APRIL 20, 2008 12:30 PM, CDT

I had to stay with Diego at pre-school. I guess I will for a while. He did have fun though and that is what is important. Diego did OK with the casting on Thursday. He will try on a mold next Thursday when we see Dr Femino and then we should get his prosthesis in a couple of weeks. We then headed toward Long Beach for our oncology appointment having to take an alternate route due to a bomb scare on the 605/5 interchange. We went to California Adventure on Friday and that was really nice. The Aladdin Musical and Electrical Light Parade were great! Diego's hair started falling out today. He said he likes being bald. It is just another reminder. We are headed to friends for dinner and playdate this afternoon and will go to the oncologist for counts and a visit tomorrow. If all is well we go in for round #2 on Friday. We also take Diego for an eye exam and I think a new lens prescription on Wednesday. Good to get these appointments done while counts are good.

WEDNESDAY, APRIL 23, 2008 11:14 AM, CDT
We had a great time at our friends Sunday evening and a wonderful week! We went to the park on Monday. I went with Diego to school on Tuesday and he really had a good day. I was sad that he wants me to go with him now but it does put my mind at ease to be there in case anything comes up health wise. We then went to the park and home for naps and baths. Then it was off to family night and book fair at Diego's school. The kids had a great time. We finished of the night with a trip to Island's and of course reading our new books! This morning Diego had an eye appointment and his vision has improved in just 3 months! He will keep the same prescription and go back in 6 months. We saw a different Dr today and he was great. We will see him again next time. In the scheme of things this seems small but it really makes us happy to know that his vision will be corrected! Thanks for the kind comments and verses in our guestbook. This experience is a rollercoaster and the support and encouragement really helps. We go in Friday morning for chemo.

SUNDAY, APRIL 27, 2008 12:08 PM, CDT

Well Diego is doing well. No vomiting and his spirits are as good as can be for a 4, excuse me 4 and 1/2 year old in the hospital. He has been doing homework or funwork as his teacher calls it. Reading to us with his Bob books. Loving his very cool new dinosaur books from Mrs. Moons and looking at a sea shell his little sunbeam friend Julia found and gave to him at school on Thursday. He should feel better tomorrow when he is done with is 48 hr doxyrubicin infusion. He will most likely get red blood cells today or tomorrow which will give him an added boost. Don't worry we have our running shoes on! I bought Diego four new animals for this trip. A chipmunk, beaver, hedgehog and a wholly mammoth. Now he is asking for a Koi Fish and Liger! Cannot find those so if anyone does send me a link or message as to where you saw them. Then a lipluerodon, deinosuchus (both dinos), a tadpole that changes into a frog and a porpoise! I'll be busy online finding the best deals on those. Goodness! I need to set up a toys for Diego fund! LOL! If all goes well just four more chemo stay to go. Thanks for checking on us and I'm happy to be in an air conditioned room while it is 90 degrees out there.

THURSDAY, MAY 01, 2008 11:14 AM, CDT
We came home yesterday at 2ish. Diego is doing great but gets depressed in the hospital. I'm not sure about children other than family visiting. I did see a child's nephew there. I know he would love to have his friends visit so I will ask. We said goodbye to Diego's best buddy since he was about 8 months old last night. He was glad to see him but sad that we can't meet up at the park anymore. Please pray we stay fever free and out of the hospital this next week. Also that he remains cancer free.

It's a sad time for my family and Diego's...

We have sold our houses in Long Beach, and the family has left California today... Last night, Karen and the kids visited Diego in the hospital, as Diego and Justice have been best friends since before he was 1 year old.

Diego and Justice will miss each other.


Please take the time to leave Diego and his family a note in his guestbook... Michelle reads all of them to Diego, and it makes him feel special to know that so many people all over the world care about him.

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

WEDNESDAY, MAY 07, 2008 01:56 PM, CDT

Diego is doing great. No fever so we get to stay out of the hospital! We plan to go to school tomorrow after his 8:30 Dr appointment. Many of you remember Miles. I wanted to pass on this article which includes his speech for the Leadership in Courage Award from the Sarcoma Foundation. It is such a powerful speech. http://www.freep.com/...505/NEWS03/805050342

SUNDAY, MAY 11, 2008 04:29 PM, CDT

Happy Mother's Day! Mine has been really nice! We had a wonderful breakfast with my Mom and our friends at their house. My Dad sang a beautiful song he wrote for us.

Diego is doing really well. He went to school on Thursday and a birthday party. We went to the park with his buddy from school on Friday, had dinner at CPK with my parents and then came home and watched a movie Friday night. We flew kites at the beach yesterday and are going to Sea World tomorrow. Diego goes in for chemo number 3 on Friday. He will have scans sometime after that. If he continues to be disease free we will be half way done! Thanks for your continued support. Also don't forget our Torch Run to benefit the cancer center at the hospital. I posted the link in the about me section. Every dollar counts. *

Miles speech for the Leadership in Courage Award from the Sarcoma Foundation. It is such a powerful speech. http://www.freep.com/...505/NEWS03/805050342

THURSDAY, MAY 15, 2008 08:23 PM, CDT

We go back into the hospital tomorrow. We will also get an MRI of his arm while we are there. Most likely Monday or Tuesday so pray extra hard. We also may get other scans done so we don't have to do them outpatient. I was praying with Diego tonight and at the end of the prayed he added and that we can trust you! Wow, just what Mom needed to hear right now.

Don't forget our Torch Run to benefit the cancer center at the hospital. Less than a month to go! I posted the link in the about me section. Every dollar counts.

SUNDAY, MAY 18, 2008 02:22 PM, HST

Diego is taking his nap right now. So far all in uneventful here. I did find out that his little buddies can visit as long as they are well. Diego's new thing is going in the wagon. This require one to pull the wagon and one to push the IV pole. It is tiring and he would do it all day if we let him. It really lifts his spirits and got him out walking when it was just me here. We have also visited the playroom everyday and that has been nice. Lilia loves it in there. We should have his MRI tomorrow or Tuesday. Please pray that Diego is disease free still. Also pray for our friend Ariel who also has her MRI on Thursday http://www.caringbridge.org/visit/ariel_gariano. Thank you to those who have donated to the torch run. We are more than half way to our goal!

Don't forget our Torch Run to benefit the cancer center at the hospital. Less than a month to go! I posted the link in the My Story section. Every dollar counts.

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

HERE is the link to donate on Diego's behalf in the Children's Cancer Torch Run.


And a BIG thanx to all those who have donated!!!!!! You guys really rule!!!!!!!!

WEDNESDAY, MAY 21, 2008 02:40 PM, CDT

Were home! Not sure when we will get MRI results but will post when we do. Diego had a blood transfusion last night from our direct donor from Frank's work. If you would like to donate blood the link is in the link section. Diego has O but all types are needed. You can direct donate for Diego and if you are a match they hold the blood for him. Keep praying for good results. Diego is so happy to be finally home again. Also please pray for our friend Ariel who also has her MRI on Thursday http://www.caringbridge.org/visit/ariel_gariano.

Thank you to those who have donated to the torch run. We are more than half way to our goal!
Don't forget our Torch Run to benefit the cancer center at the hospital. Less than a month to go! I posted the link in the My Story section. Every dollar counts.




THURSDAY, MAY 22, 2008 08:28 PM, CDT

MRI results are inconclusive.We have a tiny little mass, 8mm.We knew this. We still do not know what it is. I think the Dr wanted to be sure that it was not growing behind where we feel it. He wants to watch it via ultrasound every 2 weeks. So just pray that what ever it may be that his body heals itself of it and it disappears! I am feeling good knowing that it is very small. Diego does not mind ultrasounds either. Diego also told us that he does not cancer anymore. Also while we were in the hospital his 7 year old buddy who had rhabdo also in the right forearm and was diagnosed just about 6 weeks after Diego visited with his Mom and twin brother and sister who are 4. Diego had so much fun! The nurses were so surprised at how silly he is.




FRIDAY, MAY 23, 2008 02:35 PM, CDT

Wanted to clarify that this tiny mass or scar tissue as I would rather call it has been there since they biopsied Diego's lymph nodes and it is just under the scar line. His lymph nodes were negative for cancer.





SUNDAY, MAY 25, 2008 11:06 AM, CDT

It is wonderful to be home! Diego is doing well. If all goes well we only have 3 more inpatient treatments to go! We go back in Friday the 6th for our 4th treatment and July 18th if counts stay up would be our last chemo. We are looking forward to the torch run and everyone is invited who wishes to attend. It takes place right behind The Aquarium of the Pacific on June the 14th. You may want to bring a beach chair. We will set up next to Diego's starting point. Email me if you would like more information. MichelleFuentes1(at)hotmail(dot)com

Diego is asking to go to the Zoo so we plan to go when his counts go up.





MONDAY, MAY 26, 2008 07:29 PM, CDT

I used to have a social life! People invited me to parties and BBQ's. I guess once you can't go so many times because the parties land on the wrong weekends they stop asking. I was thinking of life before cancer today and since I missed it I decided to make buffalo chicken breast strips with homemade blue cheese dressing and Frank is making blue cheese burgers and I'm adding sweet potato fries. Another weekend of low counts. We actually only have one good weekend every 3 weeks. Normally if we were not invited anywhere I invite people over but entertaining and my new life don't work as well. I used to love doing parties at my house. Today we are thrilled to not be in the hospital and that Diego is alive. We are blessed by friends and family who have stuck by us and been our crutch when we are weak. Life changes and I cannot wait for the day when I am hosting and a bit more carefree. For now I'll take good food and our family under one roof.

Thank you to everyone who has donated to our torch run! We are almost at goal! We posted posters and flyers at Frank's work last Thursday too. Remember those who donated it is tax deductible!


Hope you all had a relaxing weekend.

WEDNESDAY, MAY 28, 2008 08:06 PM, CDT

So the pirate obsession continues! No FEVER!! Counts should be up by now. We check them tomorrow and go to school. We are officially half way done! This was sent to me by a fellow Rhabo Mom: "For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all." 1 Corinthians

That about sums it up!

FRIDAY, MAY 30, 2008 09:04 PM, CDT
First of all I think Diego thinks he is Jack Sparrow! His WBC was up to 7800 yesterday! The highest yet! We are getting ready for the warm weather by cleaning up the back yard and setting up pools for the weekend. The oncologist said he sees no reason for scans besides the ultrasounds until the end of treatment. He thinks it is a lymph node that was irritated by the biopsy. We go back in for chemo 4 of 6 next Friday. Until then it's all about fun! Diego kept saying my counts are up. I even heard him singing it while running around the backyard today.

TUESDAY, JUNE 03, 2008 06:44 PM, CDT

We had a great weekend! Made up for last one for sure. Pools were up and BBQ in full swing! Makes you forget about the reality of our life for a week! Thank God his cousin made it as he does horrible with disappointment and it really breaks my heart to see him disappointed as he already deals with so much. Diego had a great day at the school and park today and tomorrow we are off to the zoo. Diego's last day of school until September will be Thursday. We go back in the hospital Friday and I hate it! I know how much he will want to be with his friends. I guess the best I can do is bring them to him. It was amazing to see how much a visit from his friends brightened him up the last stay. He went from not wanting to get out of bed to being so silly that he managed to become unhooked from his IV line! We have one visit lined up and I'm working on two more.




WEDNESDAY, JUNE 04, 2008 02:42 PM, CDT

So we did not make it to the zoo today and I guess yesterday's post was premature. Diego had a 102 fever last night at 3 am. Because his counts are good, we were able to give him a fever reducer. So now we are watching and waiting. I called our Dr and he believes it is a virus. We hope the fever does not return so he can attend his last day of school. We see our Dr tomorrow afternoon. Diego got over missing the zoo better than I thought he would.





WEDNESDAY, JUNE 04, 2008 11:16 PM, CDT

Diego has a 103.5 fever and is headed to the hospital. Will update tomorrow.

And hurray!!! We are over the top in our donation goal for Diego's upcoming Torch Run to benifit children with cancer:

THURSDAY, JUNE 05, 2008 04:30 PM, CDT

Well last night was fun! NOT! We arrived at the emergency room and with the bald head and surgical mask and were rushed right in. We then spent 11-5:40 in the emergency room. The Tylenol kicked in and he was dancing and clowning around with all the nurses and staff. We finally fell asleep around 4:30 and were woke up 5:30. We arrived at our room and were left alone at 6. Diego slept until 10 and spiked another 102.5 fever at 11am. We did a chest x-ray and consulted with infectious disease. She said she did not expect anything. His ANC is 10,000 so we are trying to figure out what is going on. Hopefully not a central line infection or anything serious. He is on 3 antibiotics, an antifungal, and antiviral. Hopefully the antibiotics will kick in and the fever will be gone. I hope we know more tomorrow. It takes 3 days to rule out most central line infections. Thank's for all the prayers and words of encouragement. I did have a small breakdown this morning thinking of how Diego would miss his last day of school and all the things Cancer has taken. I was really tired mind you but I think I needed a good cry. I am filled with much more peace now.





FRIDAY, JUNE 06, 2008 12:03 PM, CDT

Not exactly sure what Diego has yet but the Dr's believe we will know soon and that he will be fine in a week! The Chest CT and X-ray show that he does have a small amount of fluid in his left lower lobe. We will go down there with a tube and put in some saline and draw it out so we can treat it with the appropriate medication. We caught it quickly so he should be fine in 5-7 days. It could be bacterial or viral pneumonia or a fungus. Since it is in the early stages and Diego's immune system is acting like that of a normal child right now this will just be a minor set back and the Dr believes we will be at the torch run on Saturday! Then we will come back and do our 5 day chemo. Diego's ANC was actually 22,000 yesterday! So his body is fighting. Today it is 12,000 so possibly the antibiotics are killing a bacteria. Will update when I know more. Thanks for the thoughts, prayers and kind words.

SUNDAY, JUNE 08, 2008 07:37 PM, CDT

Sorry guys. Meant to update yesterday but Diego is keeping us on our toes! They decided to do a chest x-ray Monday before doing the bronchoscopy So pray that it has all cleared up and we will not need one! He would have to be sedated and I'm not sure what it could be if all of the antibiotics, breathing treatments and antifungal are not doing the job. He sounds clear but he sounded clear when we arrived. His fever spikes are gone, only one low grade fever today which could of been a result of a medicine he is on. He really has kept his spirits up but wants a constant playmate and stays up really late as he is not being knocked out with benydrl like when he is on chemo. I will update tomorrow after his chest x-ray results.




MONDAY, JUNE 09, 2008 08:00 PM, CDT

Good News, bad news...

So the good news is the chest x-ray shows over 50% improvement. The bad news is he has spiked two 103 fevers in the past 12 hrs since I took him off the tylenol and motrin. So we will do a bronchoscopy tomorrow. He will be sedated. We will not have immediate results from that. Hopefully by Friday we will know exactly what is going on or his fevers will cease. Not sure now if we will be at the torch run. Diego seems fine otherwise. He is getting a blood transfusion tonight. I hope I can get some sleep. Please pray it goes well tomorrow and that his fevers go away.

TUESDAY, JUNE 10, 2008 01:53 PM, CDT

Diego is back in his room. The procedure went well and he woke up great. He also has not had a fever since a low grade one at 10pm last night. They said there was not much in his lung and we may know it is bacteria, virus or fungal tomorrow. While Diego was in the operating room I went to the gift store and they usually have pretty basic stuffed animals but this time they had one muircat! So exciting. He loves it. I actually did get some sleep last night and Frank will sleep here tonight so I can get some rest. So keep up those prayers for no fever and that we can attend the torch run on Saturday. This verse from a fellow cancer Mom really got me through:

Philippians 4:6-7 (New International Version

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. 7And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
Thank you Shannah.



WEDNESDAY, JUNE 11, 2008 09:58 AM, CDT

NO fever since Sunday ! Thank God! The preliminary results are it is most likely a virus. Looks like we will be at the TORCH RUN!!! Not sure when we will be released. Thanks for all the support and prayers. I will update when I know more.



WEDNESDAY, JUNE 11, 2008 06:16 PM, CDT

Diego is now unhooked from the IV poll and all medication will be oral! Looks like we are going home tomorrow! What a turn around! As if the news could not get any better we called Make-A-Wish about our DisneyWorld vacation and they said if we can go October 3-10th we will be on a private flight with 25 other Make-A-Wish families non-stop from Los Angeles to Florida. There will be a big party thrown by them when we arrive. Crying tears of joy as I type this. God Speed. Only one family from our chapter will attend! Amazing, magical and we are so excited!

THURSDAY, JUNE 12, 2008 02:47 PM, CDT
We are home! We will be at the torch run! It starts at 10:00 am for those interested. Still excited about our Make-A-Wish trip. Tired but happy. We go back in Tuesday for our 5 night chemo stay. Pray Diego stays strong and healthy through these last 3 rounds of chemo.

MONDAY, JUNE 16, 2008 08:51 PM, CDT

Thank you to everyone who supported us in this years torch run. The torch run was great. Diego was a bit overwhelmed as more people noticed him this year. His picture from last year is quite popular and was on the poster for the event and in many slide shows and in the Grunion Gazette last Friday. He had fun hanging out with everyone. On Sunday we had Father's day dinner here. My sister is here from New York and Frank's Mom from Chile. It was nice. Sorry I did not update sooner but we had a lot to do for the torch run and Father's Day. Not to mention just getting over the 8 day hospital stay. We have been home 4 days but go back in tomorrow! I will try to put up a slide show soon. I still need to unpack from last week and pack for this week!

FRIDAY, JUNE 20, 2008 08:53 PM, CDT

Sorry I did not update earlier. Diego is doing well. Misses home but doing good. Looks like the Torch Run slide show may take a few more days. Too hard to work on it here. Diego still has a little bit of congestion in his chest so we will go home with albuterol. Pray he stays healthy through these last rounds of chemo and continued healing. On a really exciting note that little bump we were worried about has disappeared! Maybe the antibiotics? Very exciting.




MONDAY, JUNE 23, 2008 08:32 PM, HST

We arrived home yesterday at 10:30 am! We had a nice day. Unfortunately Lilia spiked a 102 fever today after vomiting. She was laying on the ground covering herself up with her blankie saying I don't want to be a princess anymore and I don't understand. Funny but scary. After that no more vomiting and she ate fine but still feverish when the fever reducer wears off. I am taking her into the pediatrician tomorrow and praying Diego does not catch whatever it is. I don't think we can stand any more time at the hospital. It has been a challenging couple of weeks and now I'm worried about Lilia and hoping it is an ear infection as that would not be contagious. I did enjoy cuddling with her extra today as she usually is not as cuddly. We really want to attend the Long Beach Pirate invasion this weekend at the pier mate. Being in the hospital with all of the adorable children and families who are also struggling through made me even more grateful for the support for the torch run. The service they provide to families in all stages of this horror is really a bright light. They took a group of teens to Disneyland last week. I know it was such a lift for our buddy Jeffrey when he attended last year. I also wanted to share the youtube videos for those of you not reading Julian's carepage. Diego is in the 2nd video. Please do not turn a blind eye to the reality of childhood cancer. As disturbing as it is to you it is 100 times worse to be in the battle. People need to be aware and support funds specific for childhood cancer as much of the funding goes elsewhere. The videos are called Cancer's Hell:
ANGELS
STILL FIGHTING (BOYS)
STILL FIGHTING GIRLS & BOYS
STILL FIGHTING & ANGELS

TUESDAY, JUNE 24, 2008 01:27 PM, CDT

Lilia is fever free but may have hand, foot and mouth! There are two sores on the back of her throat but no where else. She will no longer be contagious tomorrow night. Not sure where she picked it up other than the hospital. Really hoping Diego does not get this. He had it about a year ago.




TUESDAY, JUNE 24, 2008 11:19 PM, CDT

Well no fevers but Diego had some green mucus. Sorry to gross you out. I called the oncologist and he called in an antibiotic. So Diego took 7 different meds today! Bactrim he takes every M-W as an anti pneumonia and diflucan everyday to quell fungus, plus his wonderful GCSF shot which is very painful to bring white blood counts up, solutab for heartburn caused by one of the chemos, acyclovar to prevent a mirage of mouth sores caused by herpes symplex 1, augmentin for green stuff and cold and cough medicine. Nurse Mommy can say his chest sounds clear and energy level is up. Eating very well too. Weighed 16.3 kg in the hospital if you can do the math! Our goal is to get to the Pirate Invasion Mates! Pray for health. Slide show of the torch run is coming. Hoping to get actual picture of him running from the photographer.

MONDAY, JUNE 30, 2008 12:58 PM, CDT

Sorry for the delay in updates but I have been busy here. It seems to never end. Lilia vomited everyday once or twice a day until Friday. Diego has clear mucus now but his cough sounds pretty bad. He will see the Dr on Wednesday and gets blood work today. Hoping it will go away soon. It is not inerupting his sleep so that is good. I am really behind on emails but should catch up soon. Busy working on projects around here. We made it to the Pirate invasion but at 1:30 they still had not invaded the pier! Diego was very disappointed as were many other kids. He quickly got over it though when he got to go play in the sand. Frank is going to try and get the torch run pics from the photographer today at the hospital so I can make the slideshow.

SUNDAY, JULY 06, 2008 09:57 PM, PDT

Hope everyone had a great 4th of July weekend. The kids actually saw fireworks for the first time! We did try to see them at Disney but they cancelled the show due to wind. They both were just amazed! It was so cool to watch them. The rest of the week was nice as well. Frank's Mom is still in town from Chile. We played tennis at the park. The kids love watching Wimbledon too. Diego is getting better all the time. We then played at the park. Daddy and Diego saw Kung Fu Panda on Thursday and loved it and went to lunch at Island's just the boys! We met Diego's buddy from school at the park on Thursday afternoon and at the fireworks show at the park on Friday night. Diego's teacher also made Diego the most precious picture book ever. My parents want to buy a copy and are taking it to Bible Study to share. Also my niece Michelle stayed with us this weekend. The kids love her. We went to the park again today and are gearing up for our 5th of 6 chemos tomorrow. Hopefully we will have a few visitors while there and Diego's spirits will be high. Diego will also get another chest x-ray to check on his pneumonia. I hope we will finally get the torch pictures. They do not have them at the cancer center yet but the photographer works in Miller's West so we will visit him this week. Oh and FINALLY....parts from Germany arrived and Diego's robot arm is ready! We will try it on Monday the 14th! I hope he likes it. He is doing so well without it. We also then should start physical therapy to help him use it.

WEDNESDAY, JULY 09, 2008 04:38 PM, HST

Diego has been doing well so far. He has had fun playing games in the playroom and watching movies. There was a dwarf horse, the smallest in the world named Thumbelina that visited yesterday and today was Pandie-monium over the resident therapy dog. Diego's buddy from school also came with french fries! Yummy! 2 nights down- 3 to go.

THURSDAY, JULY 10, 2008 10:16 PM, CDT
Diego still has a partial lung collapse. The pulmonary Dr wants to do another bronchoscope. I asked him to hold off until we come back in three weeks. Diego will be on breathing treatments at home. Please pray it clears up and we do not have to do another procedure. Diego is still doing great and Lilia loves being at the hospital with us. Today she chose a ballerina princess costume to wear and take home and had a ball with glue. She needed a bath after that! Diego loves playing board games and this mini air hockey game they have. There are so many new kids here lately and it is sad seeing little girls hair fall out and hearing the scared screams. Please pray for all the kids.

FRIDAY, JULY 11, 2008 12:45 PM, PDT

So I must admit I have been a little worried and depressed. I keep telling myself in my heart I know he will be fine but it is hard not to worry. God has told me Diego will be fine but Satan is still trying to hit us with doubt. I talked to the pulmonary Dr and the oncologist. They both reassured me that it will be resolved and it is not urgent. I was thinking of how much better I feel and a hummingbird came right up to the window! God is good and we will be home tomorrow!

MONDAY, JULY 14, 2008 09:38 PM, CDT

Diego did not get his robot arm today. His arm has grown so it will need to be adjusted. Diego asked if the arm could be camouflage instead of skin color! The Dr said yes. He was very comfortable with it and now is excited to have it. We will be seeing Diego's surgeon tomorrow as this past month his bone seems to be growing quickly which may require a minor surgery. I hope not but it was something we were told could happen. Also Diego has not been very well tummy wise. He got sick before we left the hospital, twice yesterday and once today.

TUESDAY, JULY 15, 2008 07:04 PM, CDT

Diego seems to be on the mend. Long Day today with the x-ray and seeing Dr. Femino. He will need a minor 1 hr surgery to remove part of his bone. He has stump overgrowth. This will happen on August 27th and may or may not be outpatient. We are planning for an overnight at least. Diego will not get his robot arm until after that date! He will most likely need to be recasted and then just the top part will be redone. We hopefully will get our last drop of chemo ever in 16 days! Unbelievable. Seems like just yesterday we were at City of Hope removing his arm.




FRIDAY, JULY 18, 2008 09:32 AM, CDT

This has been a rough week. Diego was sick so I put him back on zofran around the clock. Last night his mouth sore woke him every hour in pain. Then he slept from 5-8 a.m. Poor guy. I really hope this sore goes away quick. His white blood cells should be on their way up. We did go for a walk yesterday morning and Diego wanted lemonade in our fancy plastic glasses(wine glasses) with a wedge of lemon on the rim. I added little umbrellas I had bought for him about a year ago. It was cute. Trying to keep my eyes on August and the end of this part of our journey.




SUNDAY, JULY 20, 2008 10:10 PM, PDT

Diego's mouth sores are not waking him up but are making eating uncomfortable. he threw up again this morning. His platelets are also obviously low and with him taking naps again I think his red blood cells may also be low. Hopefully on the way up. We go in for blood work and to see Dr. Calderwood on Wednesday and plan to check in on Sunday for our last chemo. Frank and I celebrated our 10 year wedding anniversary last night. It was really nice to get out. We are very blessed to have each other. He really is my best friend and so much more. Today Frank, Diego and my niece Michelle saw Wall-E. Lilia and I enjoyed frozen yogurt and a walked around a small local shopping area that has fountains and bridges over the man made pond. It was nice to spend time together. Especially on the grass as it took Lilia about 40 minutes to eat her yogurt in my lap while basking in the sun with the cool ocean breeze talking about whatever came to her mind. Tomorrow we plan to go to the park. I hope his belly issues clear up soon.




MONDAY, JULY 21, 2008 02:58 PM, PDT
Forget to tell you about our dinner after the movie! We went to The Crab Pot on the marina where we ALL had calamari, shrimp, fish and crab! Oh and the dessert is this yummy yellow cake filled with rhubarb and strawberries baked fresh and served hot with French vanilla ice cream! It was so yummy. We watched the sunset seaside from our table and then walked along the marina until it was dark. It was a much deserved wonderful day! Diego begged us for a seafood dinner. Today we headed to the park and tomorrow we are going to see the Pirates Who Don't do Anything (a veggie tales movie) at the free family film festival! Also the photographer at the torch run said he again got a great shot of Diego. Hopefully next week we can get a copy and I will post it along with others in a slide show. One more thing. Diego's prayer quilt of love is on it's way and I am so excited! I will post a pictures as soon as we get it! Can't wait to see the look on Diego's eyes. Diego still is not 100% but his energy level is much better.

TUESDAY, JULY 22, 2008 10:07 PM, HST

Diego's prayer quilt is here! Here is what was on the enclosed note: Patchwork Prayers is a simple idea with powerful results. The warmth of the quilts comes from prayers tied into each knot on the quilt. As Bridget made Diego's quilt for him, she tied each knot and said a prayer. When Diego has visitors, they can tie a knot and say a prayer, he will be wrapped in love and prayers. We hope Diego's quilt will bring him love, hope, warmth and comfort. Diego opened it and loved it! It is covered with bright colors and dinosaurs! Great quilting too. Tonight we talked about Diego's last chemo and praying that his cancer would never return. He said yes but we need my quilt and we need to tie a knot. Thank you Bridget and Marta and everyone at Patchwork Prayers.
We had another great day today watching the Veggie Tales movie and going out to lunch thanks to Grandma and just being kids playing throughout the house. Tomorrow we are off to the park and then to clinic.
PS
I took a photo of Diego praying with his blanket but the setting I used made the photo too big for the site so I will attempt again tomorrow.

THURSDAY, JULY 24, 2008 10:08 AM, CDT

Diego's counts are great but he did lose 2 lbs. The Dr did a couple of blood tests to make sure he is not malnourished. With the green and red powders and supplements he gets I don't think he is but I'm glad we are checking. He also prescribed an appetite stimulant to see if that helps. We also have to bring in a poop sample as he has had on and off loose stools. As soon as he goes today we have to drop it off. Diego said yuck! I hope they use gloves! So if all is well we will go in on Sunday for chemo and get our chest x-ray and maybe a couple of our other end of treatment scans.

We are tying our knots every night. Diego loves sleeping under his quilt!




SUNDAY, JULY 27, 2008 10:03 AM, CDT

Diego is eating a lot now and even though we are broke we took him to two restaurants as he had big cravings! We had a great week at the park at home. It is amazing the difference a week makes. We are supposed to be in the hospital today but there was a mix up so we will go in tomorrow instead. So today we will again go to Liberty Park enjoy there awesome playground, cool sprinkler water park and have a picnic lunch. Tomorrow we will be off to the hospital.

"Diego asked if the arm could be camouflage instead of skin color!"




Thats awesome! When I was a kid I broke the hell out of my left arm and they gave me the option of several different colors for the cast, including camouflage. I got camo for the full arm cast and when they switched to the one that just covered the forarm, I changed to glow in the dark. Having those cool ass casts made me almost happy I broke my arm (that lasted untill I found out I couldnt get in the pool). I hope Diego is just as excited about his new arm.

TUESDAY, JULY 29, 2008 10:28 PM, HST

Rocking and a rolling here at the hospital! Hope you all enjoyed the earthquake. Lilia and Diego were watching a movie and did not even realize there was an earthquake! The earthquake just added to an already anxious week. We come in on Monday and Diego has a 101 fever! His blood work reveals he needs a transfusion. He has been fine since. Our oncologist informs us his last day is Friday! Our CT reveals no change in his lungs and pulmonary wants to go back in! We are not going to do that and the oncologist agrees. Then we have an earthquake- pretty nice size one that seems to roll forever. Tomorrow we have a bone scan hope that comes back good so I can exhale. It is a really stressful time coming to the end of treatment but losing our wonderful oncologist is really hard. I remember the first day I met Dr. Calderwood. He asked me how Diego was doing and then he asked me how I was doing. None of the other doctors asked me that and I cryed a bit and said well I had not thought about that until you asked. He said just know this is the hardest thing you will ever go through. He never sugar coated anything but made me feel comfortable with the truth, even when he told me Diego would most likely loose his arm I could deal with it. He just always knew what was going on with Diego without looking at any notes. He always was so compassionate and would always answer my questions with such knowledge. He has to move on but we will never forget all he has done for us.

THURSDAY, JULY 31, 2008 11:42 AM, CDT
Yesterday we did not have the bone scan. We will have it today at 2. We did get some concering news though. There is an area in his bone near his shoulder where he has something going on. The oncologist says it looks like a cyst rather than a tumor but we cannot rule that out without a biopsy. We are having a hard time right now, especially me. I'm hoping we will see Dr. Femino the surgeon in Tuesday but we most likely will not be able to biopsy it until the following week when his counts come up. Hopefully we will have his other surgery done that day as well. I'm thinking I may need to start an anti-anxiety med finally. I had a rough night. Please pray for our family. Some good news. Diego's weight has went back up to 16.1 kg! That is about 35 and a half pounds. He looks great and is doing well.

THURSDAY, JULY 31, 2008 04:10 PM, CDT

Well some hopeful news. It did not light up on the bone scan. The radiologist who used to be an oncologist compared it to the last one and said there is no change. Prayers are working! Thanks for all your kind words. I'll post more tomorrow.




FRIDAY, AUGUST 01, 2008 05:03 PM, CDT

The bone scan came back completely clean which actually is a first for us! It is pretty sensitive so random things pop up on it. Also we found out the CT reports the spot on the shoulder is only 8mm. So that is much more promising. We will meet with Dr. Femino on Thursday morning and see if he want to biopsy it or watch it. The oncologist was very optimistic. It was still very hard to say goodbye.




SUNDAY, AUGUST 03, 2008 09:46 PM, CDT

Child Life had a great last chemo party for Diego complete with an awesome pirate sign, ipod, microscope (his favorite), and many other awesome gifts. He really loved it all and cannot wait to go back but just as a visit. The thought and love they put into it is amazing. We have had a wonderful 2 days home. Diego wanted another crab feast so I went to a wonderful market that carries Chinese food in the Artesia. I bought live Dungeness Crabs at $6.99 a lb and live clams at $2.99 a lb. We also had Trader Joes's Calamari and fresh baked sourdough loaf with whole grain rice pilaf and my cesar salad. My niece was here too and we all loved it! Tonight we had more of the rice, bread, salad and yellowtail that I bought on sale at the market for $2.99 a lb! Diego is eating very well and feeling great! He has had a great time playing and talking up a storm. He is so adorable and loves having dinner conversation. He explained that Lilia has been crying more and not listening because she really loves him and it is hard for her when he is at the hospital. We said but it is not your fault and he said oh no it is cancer's fault. Another conversation was about how he should talk to Lilia about potty training and school and how he has a pooping book that he would like to share with her! How old is my son? I could go on. He makes us smile on the inside too. Frank and I are doing really well but are feeling overwhelmed about our oncologist leaving but know in the end we will make the right decisions. We really feel in our hearts that Diego has been healed.
"Don't be afraid, I am with you. Do not be dismayed, for I am your God. I will strengthen you. I will help. I will uphold with my victorious right hand." Isaiah 41:10
(thanks Heather)

THURSDAY, AUGUST 07, 2008 03:49 PM, CDT

We had our appointment today with both the surgeon and the sarcoma specialist at City of Hope. Dr. Femino agrees that it looks like a bone cyst but said that since he is already doing surgery on August 20th he would do a core needle biopsy at that time. The surgery will be in 20 days. So we are staying positive and plan to have tons of fun these next 20 days! We also had another scare this week. For 24hrs we thought my Dad had melanoma! The dermatologist from Kaiser read the result on the computer but the pathologist called the next day and it is actually just a-typical cells! PHEW! That is pre-cancer and he will have more tissue removed but thank God it is not melanoma!





FRIDAY, AUGUST 08, 2008 02:37 PM, CDT
OOPS!

Actually surgery is the 27th. Also left out that they will be taking a piece of his bone after cutting it and fusing it to the end. He will have metal pins in it for 3-4 weeks. This will hopefully prevent a future overgrowth and surgery.

I had a barbie arm for a while. It was a dark period in my life.

Every time I see this thread hop to the top, I get excited to read about any updates. It's hope; it's inspiration; and my well-wishes are for Diego and his family.

SUNDAY, AUGUST 17, 2008 08:48 PM, HST
Hi everyone! Sorry I have not updated lately. We have been having fun doing normal kid stuff. We have been going to the park, playing in the pools, eating frozen yogurt, going to free family movies days and having play dates. We also went to the Cerritos Library which is beautiful and has a great kids library with a real 40 ft T-Rex skeleton and huge tropical fish tank! Lilia will be 3 tomorrow. I can hardly believe it. We have a full week and two days until Diego's surgery and although it weighs on our minds we are doing well. We have 2 full days of pre-op stuff at City of Hope on Thursday and next Tuesday. Thank for your continued support and prayers.



MONDAY, AUGUST 18, 2008 10:34 PM, CDT
FINALLY! The Torch Run Slideshow! http:////www.rockyou.com/show_my_gallery.php?source=ppsl&instanceid=120624918



SUNDAY, AUGUST 24, 2008 06:59 PM, PDT
We are only a few days away from Diego's surgery and biopsy. I would be lying if I said we are not worried. It is very scary to think that we could get such horrible news. Please keep us in your thoughts and prayers. Right now it feels like we are on a roller coaster that has stopped with us at the top of the hill suspended.

MONDAY, AUGUST 25, 2008 06:19 PM, PDT
We are doing much better today. The power of prayer and the Bible! So keep up the prayers and the messages. They have really helped us as well. Sometimes it takes times like these to really feel the power of God. I know I do not have an off and on switch and it and I feel him here.



TUESDAY, AUGUST 26, 2008 08:16 PM, CDT
We had a rough day today. Very exhausting. Not sure when I will have computer access tomorrow to write an update but I will as soon as I can. We need to be there at 6:30 am to do the CT that should of been done today thanks to our insurance company. Thanks again everyone our surgery should be about 10 am. God is good.

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